January 1

Welcome to another year of living!

Another year of reading my Bible and trusting in God.

Another year to embrace friends and help others.

Another year of loving my husband and...

More time to breathe.

Brian and I were out last night at a friends house cheering in the New Year early. We came home by 9PM to avoid the drunks on the road. I got into bed and read some. Before midnight, Brian came into the bedroom and hugged me and said "I want to be hugging you when the new year comes in". So we cuddled. What a tender heart he has. Brian knows I am soon fixing to go back to Duke for a tune up and it weighs heavily on his mind. I have tried so hard to stay out of Duke for both Christmas and the new year, but my CF is telling me it's time for the triple cocktail of IV antibiotics I need now. We'll see.

So what a blessing it is for me to have come through another year of living. My friend Donna reminded me last night that I swore I would be DEAD before my 45th birthday, and here it is-- coming up in 2 weeks time. When I signed on the dotted line for the lung transplant list, we certainly did not count on me being alive 5 years later without new lungs. But God (and Duke) have worked miracles and so I am here, soon to enjoy my 45th birthday, as a an adult living and surviving with Cystic Fibrosis. For that blessing, I am rich!

I'll let you know when it's time for Duke, and yet again, I'll probably be spending my birthday there in the hospital. But not to be upset, because it will buy me more time to live in the long run. Have a blessed New Year...Love Lori

January 13...Where Have I Been???

Oh Goodness! Where have I been?? So busy (or sleeping) that I neglected to jump into my web diary and tell you about my boring life. In fact, I even slipped on my sisters birthday. Yikes! My sister Vicki just had her birthday on January 11th, and all day on the 9th, I was aware it was just 2 days away and I'd call her and sing her Happy Birthday on the phone. Then on the 10th, I wanted to jump on the phone and call her a day early, just to call and say "I Love You" and "Happy Birthday". Come the 11th, I plum forgot. Drats. Then on the 12th, it hit me hard! I forgot to call my sister. Oh no. Now I'm in the dog (or cat) house. What a lousy sister I was. I was so hyped leading up to her actual birthday that I wanted to call, and then on the actual day, dumb Lori here forgot all about it. So with my tail between my legs, I called on the 12th and hoped she'd take my call. I apologized about forgetting and gave some lame excuse as the answering machine went BEEP and cut me off for being too verbose. Sorry Vicki. But at least your gift got there way early, so I did something right. I've just been running under the radar, feeling sub par, and not ready to ask Duke for help. I also said goodbye to a friend who died at Duke. Kathy did not have CF, she had AML, a form of adult Leukemia, but it was her father who came to know me. Her dad would visit me when I was in every few days, since he knew I do not have family in North Carolina. I enjoyed these visits from Philip, her father. But sadly, her body could not longer fight the invaders and God called Kathy home. She was His child. She is home now. So my head wasn't quiet right for a few days as I lamented the loss of another dear friend. Plus I've enjoyed my freedom to do whatever, and a few days of breathing better made it worth it, but alas, it's time to pay the piper, and the palm reader Lady Viola says Duke is clearly in my future.

The New Year came and went easily. I felt well but underneath it all, I've been coughing up a lung non-stop. So much so that it bothers Brian at times. Even he has asked me to clear out my trach and stop all that bubbling noise that comes from inside. Last Sunday as we drove to church, I took out my inner cannula from my trach so I could put in a clean, not clogged one. When Brian got a whiff of the stench of the smell, he could have vomited. He gagged, rolfed, and spit up into a soft drink cup. The smell of my CF bugs coming from my trach (and deep from my lungs) was that nauseating to him. Now imagine how much MORE I experience it when I smell it constantly.

I am certain the smell is the odor of pyocyanin, which is a product of the breakdown of pseudomonas. 5-methyl-p-zone being the chemical name for pyocyanin. My CF friend Eire who is a PhD genius in disguise, wrote her first Masters Degree in organic chemistry (this was before she decided she wanted to be a poet instead), and her entire M. Sc. research project centered around the (paradoxically) anti microbial properties of pyocyanin in pseudomonas aeruginosa.  Her thesis was titled, "Synthesis, spectrophotometric, and electrochemical analyses of 5-methylphenazinone" (5-methyl-p-zone being the chemical name for pyocyanin). Who said we cystics aren't geniuses in our spare time?

Einstein friend Ray Caldwell would be the one to know. He is a PhD researcher in the CF department at UNC. Now HE'S a smart cookie. Plus he's married to my friend Jennifer, and their DNA produced the cutest little organism ever, named Chloe. She's a real butterbean and I love little Chloe. OK...back to sputum. All sputum is NOT the same. CF sputum too, varies greatly. It's lung goo, lung junk, crap. And being CF, its job is to kill you. You are the host and the infection from these lung bugs, have as their number one job, the task of killing its host. Me. So this lung goo smells horrid, tastes even worse, and tells the story about the microbial colonies playing havoc in my lungs. Everyone starts off with the easy stuff, but as we get older and hang around other CFers, we sometimes trade organisms unknowingly. In my case, I have some real trouble makers. But I also have a few treatment options that sometimes works against these bugs. So I am fortunate to have a cocktail of IV antibiotics that we can use to hit these bugs up hard. Sometimes I get a get bang for my thousands of bucks, sometimes nothing.

Anyhow, this all brings me to why I have neglected to jump in sooner and write. Busyness. I just got busy living. That's all.

I just got off the phone chatting with my friend in Durham, NC. She is my Duke friend, named Jennifer. She called to check in on me as she too, hadn't heard from me. That can mean something scary. But fooled ya! I was just busy with life and living and breathing. And trying to fight off these bugs has made me tired a bit more. So last week I donated an awesome sputum glob to the lab. It's been cooking for 7 days and so far I have not heard anything. Not unusual. My CF bugs often take 10 days to tease them out so they can be identified. So I emailed the wonderful Dr. Randy Garnett and asked him to jump on the computer and pull up the results. I'm waiting to hear back from him via email. But in my wisdom, I also touched base with Duke and Dr. Kussin is trying to get a bed for me in the CF "Cootie Corner" ASAP. It doesn't look promising for this week, but perhaps this weekend someone will be discharged or die, then it opens up the bed schedule and I'll be rotated into the game. That's how it happens. Some people wait forever to get a bed. At Duke, my longest wait has been 3 days, so I am NOT complaining. Anyhow, my job is to keep breathing and then get some IV goodies into my body to help with these bugs.

So where will I be spending my birthday on Friday?? AT HOME!! Not at Duke. Yeah....My big 45 will be at home. It's remarkable to be alive to celebrate another birthday because with CF, your parents are told you will die young. I never imagined me being alive at 45. It's a wonderful gift. So Friday is my celebration and I'll be quiet here at home napping, using the internet, and ready for Duke to call and tell me to come one down and play Wheel of Mis-Fortune. But seriously, to my sisters, family, parents and husband Brian, and I can't forget a few likeable nurses and docs along the way, Thank You for helping me live to make it to age 45. To God be the Glory! Happy Birthday to ME.

January 16...

Today is my birthday.

It was one of the nicest birthdays to add with the others I can recall. Why was this one notable?? For the people who love me and showed it. My neighbors Ruby & Rudy made Brian and I a bountiful dinner and we were blessed by their hospitality. Ruby made us an ice cream cake out of Heath bars and ooooooooooo.....it was so good!! She also made me a goodie bag to go, so if I were called to Duke, I'd have a bag of birthday goodies to open up. Let me also tell you about the flowers that came from Bristol, England. Brian has an admirer of his Big Band radio station who lives there in Bristol and he has taken a liking to us both. He is elderly, and his wife is frail, yet they get joy when they listen to his Big Band era nostalgia, and so Roy and Marjie had fresh flowers sent to my home for my birthday. Such a beautiful arrangement with orange, gold and pumpkin colors that the basket really is a treasured gift. Thanks to our listeners from Across the Pond, in England. At about 9:05 AM today, my sister Nancy called and I made her sing me Happy Birthday over the phone. Shy as she is, she belted it out and gave it her best. The phone kept ringing. Even my housekeeper brought in a gift and a cake. We lit the cake and ate it. I could not function with out my housekeeper Carolyn. At 10 PM our time (7 in Pacific time) my sister Vicki called and we chatted for a whole hour! Just girly talk about sister stuff, but an hour was great. My day was great.

The day was so grand, until I opened the front door. It was 23 degrees out!! I gasped when the cold air hit my trach!! Ouch. It really stings! Can you believe it was just 70 a week ago, and today it's in the low 20s?? Very unusual for here. At least we don't have a flake of snow. So then Ruby my neighbor called and we went on a day trip and ended up at the Virginia Beach Oceanfront. It was very cold and there were no people on the beach. None. Even King Neptune was cold. Well, let me just close by saying I had a wonderful blessing of a birthday today and NOT being in club Duke made me very happy. I am waiting for a bed at Duke, so I could be down there in a few days, but for now, for today, I am home. Home Sweet Home.

January 20...

I thought Duke would not call me.

I waited until today to email them to ask if they had forgotten about me?

It has taken 7 days to get a bed and I was gloomy I had not heard back from them.

Then at 3:30PM, Duke called and said they had a bed. Could I come?

I said we could be there tomorrow, as Brian is still at work and it's an 8 hour drive return from him to do.

I asked to allow him to come home and sleep, and then we'll get there to Duke in the morning.

If Dr. K did not like it, to call me back and we'd have to do it tonight..

So far, no call back. Amen.

So early tomorrow, we'll drive the 4 hours to Duke to get me started on IV antibiotics for my CF birthday bugs.

Amen for Duke. They came through for me.

I was thinking they had forgotten about me and I knew I did not want to drag this on much longer.

The thought of going to my local hospital is not pleasant, and since my doc in the box there is not on call for a few days, I did not want to be left in the care of just anyone.

So when I was on my knees praying, the phone rang.

Answered prayers. Off to Duke we'll go in the morning.

Here is the email link you can click on, to send me email.

It will get delivered to my room by a Duke volunteer.

When they ask my room number, put "7811".

The journey to live longer begins again tomorrow at Duke.

Click to send Lori a Duke eCard

January 22...

So here it is a day later at Club Duke and I am feeling like logging in. I was not feeling well yesterday to jump on  the internet, but Brian could not get a wireless signal when he tried, so it's just as well. This morning I went to the Vascular OR Suite to have a triple lumen catheter snaked into my femoral vein and amen for the surgeon, named Tony Smith, who did it so easily. Instead of taking usually 45 minutes, he was done quickly in 20 minutes and I was pleased with my new line. But when the pain hit, it hit HARD. I wept the whole way back to my room and then for half an hour after that. Why? With no IV site, I could not be given any pain meds before the procedure, so we do it cold turkey and it kills me! Sometimes they have pity and give me a dose of Fentanyl for pain, but not this time. I felt wounded. I was very sore, and no amount of baby aspirin will take away the pain. So I cried, talked to the Lord, and fell asleep.

At 6PM, there was a knock at my door. A nurse came in to tell me there is a man outside my room who wants to come in and pray with me. I ask her if he knows me, and the nurse says his Aunt is a patient next door. I told her to let him come visit me. His name is Clay and he is really on fire for the Lord! Clay felt drawn to come in and pray with me and tell me that being at Duke is part of my miracle. "Ain't no place better", Clay says. We chat about his Aunt and he describes her miracle from certain death due to COPD. Clay is familiar with CF, having had a girlfriend who has it, so he knows why I am here. He holds my hand and prays. Of course he is gowned, gloved and masked the whole time. So that's how my supper time went. Isn't that cool?? The Lord sent this young lad to come minister to me. Wow.

Last night, at shift change, one of the floor nurses came to my room and told me she secretly cyber stalks me. Well, not really, but she loves my blog and reads this web site always, to see what I'm doing and how my life with CF is untangling. She is very excited and thrilled to see me, to be in my presence, she says. I tell her I am nothing but what she sees in front of herself, no superhero, no enigma. She loves my job as a Death Investigator and wants to know more. She is tickled pink to see me. And I am thrilled to have an admirer. She soon leaves to catch the bus home and then I head to bed. I was up coughing a lot last night, so I did not sleep right through. Thank you Clay.

Dr. Kussin rounded with the Pulmonary Team this morning and he was in a great mood. He cracked a few jokes and made the group fall into ease as he did my physical exam and asked me when I was leaving for Disney. I told him Sister #4 and I have reservations on Saturday February 7th, and he said I'd be running from Duke to the airport, it is that close. Well the full bed situation did not help me at all, as we tried 8 days ago to get here, but with an open bed being so scarce in the CF Cootie Corner, you take it when you can get it. So my goals are to allow this triple antibiotic cocktail to effectively do its job of knocking out the bad CF bugs while not zapping my strength or giving me massive diarrhea. To make my nasty sputum less horrid tasting and to make me cough less, because my stomach hurts terribly from all that coughing.

I'll end here. It's shift change now and time to get ready for more chest physical therapy and neb treatments. I hope the promise of a good nights sleep comes to visit me tonight. I am glad to be here. Duke has saved my sorry butt yet again. Amen.

January 23...

Yesterday there was excitement on the floor as a new double lung transplant patient was discharged to a local hotel. She is just 17, and like me, while Cystic Fibrosis has been her constant foe, she was blessed to have received a second chance at life with a double lung transplant. This floor is full of such miracles, yet most times I feel sad I am not part of the happy crowd here. That group is made up of those who have faced death and have been blessed by God, to receive a second chance at life. So why am I NOT going to be cured of my CF? Why not me??

Well, because God is not our twenty-four hour vending machine.  When it says in Matthew 6:33 to “seek ye first the Kingdom of God”, it means just that; we are to seek Him above all else. Sure, He wants to bless and prosper us, but you know with what?  His presence.  That alone should be the desire of our souls.  

The Christian life is by no means supposed to be about us and what we can get out of God.  We live for Christ and Christ alone.  His glory should be the desire of our hearts, no matter how He so chooses to manifest Himself. Christ bled and died for the Redemption of the world, creation included. Sadly, many facets of the Church expect Him to cater to their every whim without even a hint of devotion and sacrifice on their part. As Jesus said, “Blessed is he who does not take offense at Me.” (John 11:6).

The favor of God is more than just financial or physical well-being.  Not to say that Jesus does not desire to bless us or does not do miraculous things, hardly the case! I think we need to check our definition of ‘blessing’, though, and make sure it lines up with Scripture.  True freedom comes from truly knowing Him, of wanting more of Jesus Christ and nothing else.

I know very well He could have healed me on the spot, if He would have so chosen. I also know I would have been with Him in Heaven right now if He had not chosen to deliver me from previous circumstances, times when I should have died but God chose to spare me, raising me up for such a time as this. Either way, the glory’s not my own but His. I can say with the utmost confidence that I’d rather be sick and on my death bed but completely in love with Jesus Christ, than well and oblivious to Who He is and what He wants to do in our own hearts and in the lives of the ones around us.

I’ve been to the valley of the shadow of death and back, and I will never forget what He showed me during that time.  I feel so blessed to know where I am today and to be able to bless others through my story. I’ve given up much in order to have the richness of truly knowing Jesus Christ as not only my Lord and Savior but Best Friend, First Love, my Beginning and my End (Romans 12 & Philippians 3:8-13).”

January 24...

I want to tell you of something fantastic that happened yesterday afternoon.

My issue of being on strict isolation and room lock down is difficult to comply with as I feel walking the halls is a good thing for me to do. I found that not having this option left me worse off from a de-conditioning stand point because although Duke does manage to get my CF under better control, I am left very weak and my legs are very wobbly when I am discharged home. Often it would take a week at home for me to be able to get my leg strength back and this was done by getting out of bed and using my legs.

It was a sore point for me and, Brian offered many times over to buy me a treadmill and bring it with us each time I was admitted to Duke, but I protested, saying I did not want to move on in with big equipment in my room making it look as though I was enjoying my stay comfortably. But this time, I pushed and asked again for Duke to OK a treadmill in my room to walk on. So yesterday about 1 PM, a knock on the door brings the PT (Physical Therapist) and her helper who brought me a treadmill!!  Awesome. They said a patient had donated a treadmill years ago to the program on the 3rd floor of the hospital but that they were able to relocate it to my room for the time being as I had the greatest need. What a wonderful gesture to do for me. So in came a large, big treadmill and so far, I am using it frequently. It came in about 1pm, and I have racked up 60 minutes of time on it already. I will do almost anything to keep from being weak and wobbly upon my discharge home, because don't forget, my sister Dolly and I have a date with a special mouse at Disney World!

My team of caregivers are skeptically upbeat that I WILL be able to make this trip. It will be tight....very tight, from being discharged one day and off to Disney the next. However, I did not plan it this way. I had been trying to get a bed at Duke for 8 days, but the inn was full, and beds were in serious short supply. When one did become available, we grabbed it right away, but I lost 8 days waiting. So that means when I am discharged home, I have to jump the gate running! I am motivated, and excited. This will be precious time spent with sister #4, and we have planned this for 7 months, so now it's our time to go and I am very hopeful it WILL happen...I will be at Disney in 2 weeks time, having a good vacation with my sister. So bring the healing on and let my lungs get a good hit from the triple IV antibiotic cocktail I am infusing. There is a mouse waiting to meet me 2 weeks TODAY. Lord willing.

January 26...

I had a good day today. Nothing spectacular, but nothing too horrible while I sit here, slowly healing. Any day above ground is better than being 6 feet below, right??

I have had many email letters of support through the Duke email page and for all who have written, Thank You. Today on my lunch tray, the volunteer department printed off 5 pages of 'Get Well Wishes' for me that they received from my link to email me while at Duke. Pretty neat to be able to do that.

I made a new friend during my last tune up whose name is Phil. He is 84 years old and his daughter died here at Duke and went home to be with Jesus 2 weeks ago right here. Long story about how he came to befriend me, but Phil is on the ball and always going non-stop. He visits sick and shut in people in hospitals and nursing homes, and gets his reward from God for doing this outreach. It was Phil who met Brian and I at admitting last Wednesday when we arrived. He helped get us to the floor with all my gear and chatted with Brian during the admission wait. Yesterday after church, he came to visit me. His wife of 58 years is used to him gallivanting with other ladies.

The awesome treadmill that I mentioned in my post above, is gone. The Physical Therapist came to tell me it had to be removed and returned to the 3rd floor as it was donated by a patient for use only for patients on the 3rd floor, so I had to give it back. What a sad thing to do...to take away my legs. I was walking on it for up to 90 minutes a day and really working it out, but now it's gone from my room and they brought me these stretchy Thera Band instead. Yeah right...as if THEY are going to take the place of the treadmill. I quickly offered to buy a treadmill for the floor here, on 7800, but they said they did not have any room for it! No place to store it when not in use. Here I offered a freebie, and they declined. It's called looking a gift horse in the mouth. Too bad for me, the needy patient, who was benefiting from having the use of this treadmill in my room as I am on lock down and can't leave my room. Sigh.....so that made me sulk for the rest of the day.

In other news, my CF bugs are still cooking in the microbiology lab, so nothing to report as yet. On rounds today, Dr. Kussin was surprised at how awful my lungs sounded. He was hoping he would have heard an improvement after the weekend, but not today. Reaffirms I am where I should be. I'm in the right place. Also, there is a red Name Alert tag on my door as there is another patient here on this floor, also a patient with CF, whose name is LORI HUGHES. Isn't that remarkable to have 2 patients on the floor, both with CF, and both have very similar names??  One is Lori Hughes, and me, Lori Morris-Hughes. There was a time when all my get well cards were being marked as "Return to Sender" because Lori Hughes had been discharged home, but the cards were for ME, Lori Morris-Hughes, not Lori Hughes. So when I asked for her phone number, I called her and told her how it was strange that she was getting my Duke Mail and would she please forward it to me?? She was very nice and said she would do so. So now, we are both here again, back on 7800, our paths having crossed again due to CF. Small world, isn't it??

Time for bed for me. I've got to turn the ventilator on and get some sleep. I covet your prayers and thank those who have already prayed for Brian and I. Praise be for healing and for the knowledge to treat CF here at Duke. Don't forget that in 13 days, Lord willing, I'll be at Walt Disney World! Amen!!!  Good Night!  Love Lori

January 27...

Today is a dreary, rainy day in Durham. But inside my room, it's hopping! I was happy to see Rayner was assigned to be my nurse today. Yeah! She is really neat and always likes to have me as her patient. Dr. Kussin surprised me by rounding way too early, like around 08 dark 15 this morning, but he said he liked what he heard when he listened to my lungs. An improvement over yesterday. I was less "wet" this morning and had a good night coughing. Another factor here at work is the Thairapy Vest which I am using and also the addition of the Sport Bed. This bed has a module in it that allows you to program the bed to deliver percussion and vibration while in the bed. It does my chest physiotherapy for me! Now how cool is that??  Plus last night, I gave up fighting with the ventilator and came off it at about 4AM. I went back on the trach collar and turned the vent off. When it alarms, then it pages the RT and it alarms at the nurses station too. So then everyone comes in to check on me, wondering if I have disconnected myself and am dead. Nope....it's just that my constant spasmodic coughing triggers the vent to an annoying level. I know these built in safeguards are needed, but without a paralytic on board, I cough.

Dr. Kussin asked me to show him the photos of our Sugar Gliders as he heard from some one that they like licking my trach cannula. It's true. When I take the inner cannula out at night to swap it for a clean one, the Sugar Gliders fight to get it. Usually Joey wins and he takes the cannula in his little paws and bites the end of it, all the while getting contaminated with my gram negative nasty CF bugs. yeah....I know how oooeeyyy this sounds, but they love the trach cannula. Here is a picture to show you what I mean: they just love the taste of Pseudomonas.

                              

Lunch today was a bowl of red jello and a serving of grapes. I don't have much of an appetite, but I do dream of food I should not be eating. Like a medium well, New York strip steak, and a real good hamburger from a store in Toronto called "Licks". My nurse Rayner, did do a cafeteria run for me and brought me back some Sun Chips. Yeah!! I am feeling better than a week ago, and I do believe this IV antibiotic cocktail is working. Amen. I read for about an hour this afternoon about my upcoming Disney trip and have prepared well in advance for this time with my sister Dolly.

I also got a nice surprise when the mail was delivered to my door today. My nurse knocked and said I had mail and brought me a small package from Vickie & Holly Beasley who live in NC. They sent me a get well card and a few Heath bars too. Wahoo!! They snuck in a few bars and it was nice to get them. Cool, eh? Thanks to Vickie & Holly, who are looking after me from afar.

At about 3PM, a knock at my door introduces me to Dr. Goodman. He is a staff radiologist here at Duke I have never met, and he asks if I would allow three first year Duke medical students to talk with me. I am delighted, and he ushers them in. They are 3 females who are being introduced to the fine art of taking a patient history. All those questions to ask and what info you gleam from it, has to be sorted for relevance. Each student is given 10 minutes to ask me questions and to learn about CF. I think this is the first time ever they have heard the words "Cystic Fibrosis" and it scares them. But....they shine beautifully and ask great questions. Dr. Goodman, the paternal type, prods them to ask specific questions related to my pulmonary symptoms and they focus in on chronic coughing verses shortness of breath. I explain how I came to be trached (long story that started in Florida....) and how I am a walking miracle. I also tell them that God has blessed me to have allowed me to live this long and that without God and prayer, I can't function. Soon the time has gone by and it's time for them to re-group with their instructor and other class mates to discuss their findings. They have to do a write up of this experience. It's a good learning task when you can have hands on time with the patient. Introducing them this early in their careers to actual patients is a wonderful thing. As they left, I thank their teacher, Dr. Goodman for choosing me today, and send them off with my web site address, asking them to log on and read more about me and my daily struggles with CF. They said they would log in and peep from behind the curtain. Lastly, I encouraged them to pray for their patients. I often pray for my caregivers, and when I hear of one who prays for ME, I am humbled. So I encouraged them in this way.

It's now 5PM and still the rain downpours. It's been a quiet day here and I've done nothing much all day. Slept, rested, exercised with stretchy bands, but not much else. I must keep my strength up so I can take on Disney in 2 weeks time and not be a basket case. The treadmill is gone. My loss. Well, let me close here and begin to read again. I had a good day today. I am slowly getting better. I am grateful to be here at Duke. Let the healing begin!  Love from Lori, inmate in 7811.

January 28...Good News

Rain rain go away, Lori wants to go out and play.....I did not have a good nights sleep. No REM sleep last night. I was up coughing, which triggers the vent to alarm constantly, but my chest was clearer this morning after having got a lot of lung crap come up and out from coughing. Another lazy morning with low lying fog enveloping the ground in an eerie sort of way. On morning rounds, I asked Dr. Kussin if he would make an exception to allow me to walk the hallways after mignight....and he said YES! We agreed that if I were gowned, gloved and masked, and had NO patient contact at all, that I could go for a walk down the hallway and around the elevator shaft. This is a major change in restrictions and will allow me to stretch my fat legs and get some of the fluid moving. Victory! Midnight will come and I'll slip in to my crocs, and with my UNC pajamas on, will walk as much as I can. It could not hurt me any, so bring it on.

I had  a steady stream of visitors today. At lunch time, Jennifer Caldwell come for a visit. She bought me a Chick-Fil-A sandwich. Oh it was so delicious! Thank you Jennifer for bringing me this very special treat. Jennifer works here at Duke so I am fortunate she can just drop in almost any time. Her little 2 year old  is so precious. Her name is Chloe and I call her "Butterbean". Jennifer's husband is a CF researcher at UNC in Chapel Hill.

Then another local friend came next. Philip Browning is the unofficial patient greeter and his job since retirement as a government scientist, is to visit shut ins, sick people, and those in nursing homes from his church. He befriended me through his connection to Jennifer's family. So Phil comes to visit me and he calls to check in on me. Today, he brings me a 6 pack of orange pop, batteries for my digital camera and some Heath bars. I love him already. He is round about my fathers age and is still married to the love of his life for 58 years, Virginia.

After Phil left to visit another patient, a knock on the door brought David. He is a wandering musician. He played his Accord ian for me and took requests. Duke has a therapeutic music program where musicians are paid to play their instruments on the various floors for patients who desire this. Previously, I have written about being entertained by a Violinist named Alan, and I feel like I won the lottery to be chosen from amongst all the patients on the floor, to be given a show of their musical talents. David played some melodies I was not familiar with, and took requests for favorites, including Amazing Grace and America the Beautiful.

Last week when I was being admitted, in the lobby they had another musician playing her Harp. She played for at least half an hour and her music was very calming and refreshing in the frantic rush to get admitted and find a bed. This was the first time I had heard a Harpist in the lobby, but there she was, strumming away and producing a calm melody. Co-incidentally, while waiting after the Harpist had left, the Violin player Alan, showed up for his scheduled gig. I called out to him, having remembered his name, and he came over to where I was sitting. I reminded him and that he had played for me on 7800 and then he took out his neatly packed violin and began to play in the lobby, just for me. As others gathered, he included them in his act and had audience participation. It was a soothing break from the hectic pace of the lobby and a very welcomed break. I really appreciated these musicians for allowing me to unwind for a bit. It was their gift to me. So to whomever at Duke runs this gifted and talented program, L'Chaim! You have a good thing going and my wish is that the funds will be there to continue to bring this blessing to the patients. I appreciated being played too and in the Bible, we are told to ..."Make a Joyful noise!...". Thank You!

                                       

So after Jennifer, Philip, and then David left, the nurses were at the nursing station desk, right outside my door, and they decided to come play tease the inmate in 7811. I got the evidence that I was taunted by Jill and Rayner, and here it is. I call it "Peeping Jill" because Jill always instigates mischief on the floor. She is a delight to have as your nurse and is serious when she has to be, but prefers to be funny most of the time. So here are the Peeping Jills, looking into my room and making me laugh.

After they had their charting done, a knock at my door brought the Recreation Therapist. This gal, whose name is Vallory, was here to provide me with arts & crafts projects to amuse me... and make time pass quickly. I had never had them ever to come  see me before, and I didn't even know they existed. Come to find out it was Philip (the guy above) who arranged it. He knows the department head and told them I was stuck on lock down and could use some diversion, so along they came to see me. The Rec Tek said they have projects such as bird houses, scrap booking, stained glass, paint by numbers, puzzles, etc. All kinds of things to do. What did I want to start off doing? I choose the Kitty Cat Doorstop to slide under the door to keep it open. So that is the current woodworking project I am working on. If I don't finish it, I have to stay here until it's done. NOT. Just foolin'. It's not a masterpiece, but just something to take your worries away for a bit while you do something else other than worry.

Just 10 minutes after she  left, a knock at my door (I gotta install a doorbell) brought Bill Taub, the CF Social Worker for our afternoon chat. Bill wanders up to the floor and looks at the master board of the inpatients, searching for familiar names. When he finds one of his adult clients from CF clinic, he then makes contact with them and tries to arrange visits. Sometimes he knows who is coming in because he goes to Adult CF clinic and is "in the know" about how certain patients are doing. He knew I was coming in because Dr. Kussin mentioned he was looking for a bed for me for the week I waited, so Bill had a heads up. So anyhow, Bill came in all gowned and gloved, and we chatted about everything BUT sickness and CF. Like about the rainy weather, about local theatre shows he enjoys, and other niceties. It will be a sad time when Bill retires and leaves his position here at Duke. He is the glue that holds the CF social work department together and he is very much needed and appreciated.

And lastly, the Duke email Get Well messages were delivered on my dinner tray from my email buddies. Everyday there is a word of encouragement from Donna Price,and then Phil has his prayer group praying for me and so I have heard from some of those prayer warriors too. My friend Ruby sends notes of encouragement and reminds me how much FUN I'm going to have at Disney with my sister. Thank You all, for taking your time from your busy day to email me. I'll close here and thank y'all for adding happiness to my day today. For your prayers and thoughts of Brian and I, I count it all joy when you think of me. Goodnight. Love Lori

January 29...Bad CF Bugs

Early this morning while the birds were still sleeping, I went for a walk. It was agreed that I could go walk the halls when it was quiet and empty. I came back to my room an hour and a half later. It was zero 2 Dark 30 AM when I crawled into me bed and went to sleep. Oh boy did my legs feel heavy. They are retaining fluid from constant bed rest and I hate when this happens. Anyhow, the solution is to walk, lots. It's no

Change in plans: My CF bugs are pulling tricks from their bag of games. Since I felt much the same as my last tune up, we went with the same IV cocktail and hit me hard with it from day 1 so we would not waste time waiting for the micro lab to tell us what was growing in my lungs. When you're sick, you can't afford to gamble by waiting, right? Well this time, my CF bugs played a 360 degree turn around on us. I am now growing

What does this mean? It confirms I have the typical bugs that inhabit CF lungs and they are resistant to much of the drugs I've been getting. So today we stopped the Fortaz and Tobramycin, kept the Vancomycin, and began Amikacin and Zosyn. Whew! The 7 days of IV antibiotics were not effective, so we start all over again and believe by the lab results, I am now on the magic elixir that will be good for what ails me. Bottom line is my bugs mutated in response to external pressures and developed a new biofilm that was resistant to the first generation antibiotics made especially for them. Amen we have other choices on the list to try out, but this is what can be expected with CF...that you develop "smart" bugs which change in response to external pressures and then they have to find new ways to cope, or die. So I am still in the fight of my life and I have not struck out yet.

It's now evening time when I am writing this, and I'll go walk again after midnight tonight.

At about 10 AM today, a knock at my door brought a smiling face I recognized....it was Diane Detmer. She is the wife to Bill who was here for an appointment in the Lung Transplant clinic. Bill had a very difficult double lung transplant for CF and is now enjoying life to the fullest with this new gift of lungs. Here is Bill's web page:  http://www.dukelungs.org/Stories_BDetmer.html

Now it's my time to walk and get these legs mobile and pumping. Looking forward to my time out in the hallway, as each step gets me closer to going home. Love Lori

January 30...

The sun came out today. It had been hiding for the last few days behind the rain clouds. I walked around last night from 12AM until 1:45AM and all was quiet. I put my jeans on, shirt, crocs, took an oxygen tank, and set out. The huge glass windows by the freight elevators show the Duke campus at night and the view is serene. The helicopter did not land or take off during my walk. The heli-pad is right at the 9th floor elevator and from my room, I know when it leaves and lands. Quiet hallways waited for me. I walked around the elevator pod about 18 times, and I was pleased later this morning at home much less it appeared to me, that I had fluid in my legs. So "Bully" for me. That is a phrase which goes back to Teddy Roosevelt...and incidentally, he was a chronic asthmatic who suffered greatly with bouts of frequent attacks. Did you know that? His father said that while little Teddies body was weak (from asthma) that his mind was not, and so he was smothered with books to engage his mind on the many days he was sick. It paid off.

My friend Jennifer came to visit over lunch time today. She brought me some nice cookies from the Mad Hatter bake shop, Thanks Jenn! In other news about the dumbing down of Americans, I had a piece of tape on my door that read: Crime Scene Investigation. Stay Back   I hung it up as a joke and indeed, many times I get puzzled medical students wondering if there really is a dead body behind the door. So far, no to that. But today, one person was upset enough that they complained and I was asked to remove it. What a piece of ......... So one person was "offended" and I lose my freedom to put up a banner meant as a joke to passerby's? I wonder if these same people freak and panic over Halloween??

I have now been on the correct IV cocktail for my lung bugs from 24 hours. No noticeable difference yet, but it is certain I'll have diarrhea as a result. The antibiotics clean out the good and the bad bugs, and so I know what happens next. Today is Friday, and in 8 days from now, I am going to be at Walt Disney World in Orlando with sister #4, Dolly. We planned to do this and 7 months ago and now it's time. Tickets bought, hotel ready, oxygen arranged, Jazzy scooter rented, and now we just need to get there. Dolly flies in from Toronto and I from Norfolk, VA. We'll rendezvous at the airport and get the Magical Express to the Grand Floridian, where I always stay when at the house of the Mouse. I am pretty confident I'll be well enough to go. I am counting on afternoon naps, some lazy time around the pool, and I have a Jazzy scooter so I don't have to walk everywhere and lug 2 liquid oxygen tanks with me on my back. It will be FUN. Any time spent with any of my sisters, is ALWAYS FUN!

OK......Brian will be coming here tomorrow for the weekend. We have arranged for a friend to come and give our Diabetic cat her 2 shots so that Brian can come visit. I miss my sweet heart Brian. He needs to be handled with care, and it will be wonderful to have him come see me. We have a hotel room close by and they have an amazing Salmon dinner on a wooden plank, with pan seared mushrooms and demi glazed sweet potatoes. He falls in love with it every time. Me? Whatever the tray brings from the cafeteria. I'm not going to be able to join Brian at Bel Gusto's (or Laird & Wynne either this time) but it is worth driving here to have dinner there. It's more of the same thing for me.....keep the antibiotics infusing so I feel better. Amen I am now on the best cocktail for my CF bugs. And better yet, Dr., Kussin is also on call all next week, so I'll have him for the whole week ahead! Awesome! I really appreciate it when I get admitted and it happens to be on Dr. Kussin's schedule, because then we get right down to the nitty gritty and skip the fluff. He knows what my stay is like and how to best take care of me. So when he is on call, it's always a good thing. As for his partners who cover for him when he is off call, they are a good bunch of clinicians too. So with that, I'll close now and lay back in bed to read some magazines. I'll write more again tomorrow, Lord willing. Take care of yourself and take a moment from your hectic day to talk to God. He's been waiting for you to chat with Him. Love Lori

January 31

I did not have a good night sleep. I guess the lack of sleep has caught up with me and I was grouchy. Then my night nurse and I did not see eye to eye as she tried to MAKE me do things I refused to do, so last night sucked.  Today was a new day. Brian was supposed to come down for the weekend but we had an emergent problem with a pump at the bottom of a well that was not working. That means none of the taps worked when you turned them on to get water and also none of the toilets flushed. This was something I decided could not wait until Monday when we might be able to get a repair company to come out so I asked Brian to call our landscaping company, Eddie Gosman, and ask for their advice since they subcontracted the well to the Heads Up Sprinkler company. In quick time, Eddie Jr. stepped up to the plate and arranged to be at our house at 0730 AM with the team to do the repairs. The job was done, THANKS to Eddie Gosman Jr. for coming out on a cold Saturday morning to please a demanding customer.

Today I was greeted by Lexi, RN. See here, she really is a RN and works at Duke (she wanted proof for her parents). This was the third day I was happy to have her taking over my care. I'll say it again, I love consistency of care, which means if you are assigned to work 3 shifts here, I want you for all 3 shifts (as long as I like you). That way we form a trusting relationship and you learn some added skills when committing to my care. I did nothing all day today. Basically surfed the internet and made some phone calls. My sister Dolly called to make sure I am healing well enough for our Disney trip next Saturday. I tried to assure her I am on track for healing to keep happening and I am not having any bad vibes to make me think I won't be going next Saturday. Let these IV antibiotics do their job and then I get to relax around the Grand Floridian pool with sister #4, Dolly.

February 1

It's Sunday and another day to spend time with God. Hospitals are quieter on Sundays. Even though today is a big day for football fans, I don't care one iota about watching it or about who loses. It's wasted time as far as I am concerned. I got to leave my room this morning at 1AM for a walk around the floor and it was a good leave. I had to get my legs flexing and stretching. I returned about 2 AM then got the vent set up, connected it, and fell asleep. It could not have been but a few hours when I was woke at 6AM for vital signs. I hardly had any REM sleep.

In quick order, I was seen and examined by the on call pulmonary doc and we decided I will get another hit of Lasix to help me pee off more fluid in my legs. Being confined to bed rest makes me hold on to fluid from lack of exercise and makes my muscles weak from not working them. It's something that bothers me and the easy fix is to get up and walk. Which brings me to next Saturday when  I will be at Disney with my sister having a good time.

I had a special visit this after noon. My neighbors have a son and daughter in law who live about 2 hours south of Duke in Goldsboro, NC and Ren Stancill called this morning asking if I'd like a visit? "YES" I said happily......"I'd appreciate a visit from you and your wife Kerrie". At home, when they come to visit his parents (our neighbors), Ren and Kerry and I have done some pistol shooting in their back yard. They have a target practice area set up and Ren has loaned me his gun to shoot. Recently I bought my own guns, so when I'm home and back in the saddle of life, Ren and I will shoot my new guns and break them in. I can't wait as I bought new laser sights for each gun and I want to break it in and line up the laser beam correctly. I can't do that here in the hospital, so when I get home and have returned from Disney, I'll get to the backyard to shoot. Tomorrow is back to full speed ahead here at the hospital. Now I just have to concentrate on getting very well and discharged to home. Love Lori.

February 3...

Another day....another Bug. I had a lazy sleep late day today because I was tired. I had not spent near enough time on the vent last night as I was fighting it (the vent) and coughing most of the time, and then it alarms and I don't sleep. So I had a 2 hour plus afternoon nap and I felt better. At about 4:30 PM, Bill Taub, the CF Social Worker came for a visit. Bill always leaves my visit to the end of the day before he goes home. Bill is sitting in a chair in my room and I am in the bed, when we both see a cockroach running on the floor of my room. It came from under the bathroom door, I think. Bill thinks it came from the sink drain pipes. We can't agree, but it is running fast, trying to get away into darkness. This is NOT the first time I have had bugs in my hospital room here at Duke. Then I write a sophomoric commentary about what went on. Here now, I present it to you, the reader......

I had a huge cockroach come out of my sink tonight and join me for dinner!   
The social worker stomped it to death, so then I was called to the homicide scene.
It was ruled first degree homicide because it was an intentional kill.
No other mourners were at the scene, preferring the cover of darkness before they come out to meet the same fate.

My nurse picked up the corpus delicti in a paper towel and threw it into the toilet, thus flushing away the evidence.

The crime scene tape was left on the door to mark the room where the homicide occurred.

Duke pest control denied it was their local hospital border roach and insisted it must be an illegal cousin from Mexico.

They declined to investigate further, citing the humans are happy with the final result and no foul play was suspected.

Regrets may be paid at the Terminex Funeral Home in Durham, North Carolina during the midnight hours of 2AM until 4AM.

When the obit hit the Durham newspaper, a concerned community member named Ruby Stancill, offered this commentary on the unfortunate event:


I am so sorry to hear that your companion inmate has gone on to the great bug house in the sky beyond.

This must be a very difficult time for you, losing your companion inmate (Mexican or Not).

At least the demise of your roommate gave you some excitement, too bad Duke did not seem to be concerned about the loss of one of their own.

When you take your walk tonight, 10,000 may show up to pay their respects.

You may end up with a toilet full of his relatives.

Just be careful that they don't decide to move to Chesapeake with you in your luggage.

They would just love to hitch a ride home with you and Brian.

Do your little fur balls like little critters to chase around?

Oh well, if they become a pest we will get some "Bug B-Gone" and you can issue one death certificate for the entire lot of them.

I am sure Rudy (her husband) will be helpful in preparing their final resting place.

Case closed.

February 5...

Tomorrow I'll be discharged home just after I have my morning infusion of IV Vancomycin. Brian will be en route to Duke to come get me and once again, I am grateful to the nursing and medical staff for treating me as a respected patient and for allowing me to go all the way with new innovations with my care. By this I mean allowing me to have use of a treadmill, and then allowing me  time to walk the halls in the early AM when the halls were bare and quiet. They just don't cookie stamp you here with protocols you must follow, but rather they help tailor a methodology that best works for you as an individual.

I can't believe I am going from couch potato to a week at Disney so quickly! This was NOT in the plan, but that's how it played out and so I am going. I am certainly not going to try every ride they have, but rather to enjoy a relaxed, set back time with one of my sisters (I have 5) and to not push too hard. I am frail right now from this admission, and it's going to take every ounce of fiber and being I am, to make it happen. Bon Voyage!

Saturday February 7...

It's 3:30AM and I am waiting for the airport limo to come and get me. Time to let Brian sleep in for longer as he needs his beauty rest. I can't believe I held up last night. After the 4 hour long ride home, I had to run some errands which exhausted me. Got them done, came home, did a load of laundry. packed for this trip, paid the bills and hope I left things in good shape for Brian and the kitties. I spent some loving time with them last night in my bed and they purred around me. Live is good. I'm about to spend a week with my dear sister Dolly and lay down some new memories and dreams. I am not getting better, so time to spend with her is precious, as it is will at 5 of my sisters! Please pray for our health and safety. I'll write more when I return. I'm off to see Mickey!

Hugs from Lori

My Morning Prayer as I Travel today....

Thank You  Lord for this new day,

so much like yesterday, and yet so very special.

Something wonderful can happen today.

I can find a new friend, reach out and help someone,

or fill the hours with productive work and have

a feeling of contentment and satisfaction.

Thank You Lord, for breathing purpose into my day

and make me aware

of its importance.

Let today bring glory to You.

We arrived at the hotel at about 10:30 AM.

Here she is.....Disney's Grand Floridian Resort & Spa.

    

Sunday February 8...

I'm at Disney!!

I could not have made it without the Lord flying as the Pilot the whole way.

Before I left at 4 AM from home, Brian and I prayed together, for my safety and my lungs.

I got out of the hospital by 12 noon on Friday, drove home 4 hours, went to the bank, did a load of laundry, packed a suitcase, paid bills, told Brian I loved him, hugged the kitties, and caught a 6AM non-stop flight from Norfolk to Orlando yesterday morning. I was exhausted, Spent. Dead. Plus so SOB (Short of Breath), I looked sick.

Everywhere I went, I was blessed (not just LUCKY, but blessed that God planned it this way for me) to be pushed in a wheelchair by an airport skycap, and I am stubborn to have never done this before. I have always walked, but I was so SOB I could not do it. When I checked in, I was gasping and dripping in sweat, as just going the 100 yards from the curb to check in alone, pulling my suitcase and oxygen, nearly killed me! I had no flight issues. I cracked that oxygen tank to the highest flow possible and prayed.

When I disembarked the plane in Orlando, there was a skycap waiting for me with a wheelchair. Amen and Thank You Jesus. After finding my sister Dolly, we met up and hugged. She flew in non-stop from Toronto, where the snow is overwhelming and the temps hanging around minus 22 to 30 F every day. She sure wanted to see some sunlight and have a few days of glorious Florida heat. It was 72 F when we got here.

The VIP Concierge Staff at the Grand Floridian were waiting for our arrival and smoothly whisked us away in a wheelchair, to the 3rd floor Royal Palm Welcome desk. We met with George who signed us in, got us ready with room card keys, meal card key, and our agenda and tickets that we had pre-arranged. They then brought me my rented Jazzy scooter and I transferred to that. It is way cool to scoot around in a scooter and have the independence to go. I strapped on my 2 liquid oxygen portable tanks to the back of the scooter and went.

We had a wonderful lunch in the Grand Cafe, looked around, booked some horseback trail riding for Dolly, then when our room was ready, we both went straight to bed! We slept for 4 hours straight through, waking about 7PM and heading down for dinner in the hotel. Again, a wonderful meal, then a scoot around then back to my room, treatments, pills, oxygen, then lights out at 11PM.

I did have one trach emergency in my room. I felt I was not getting enough air so I went to the bathroom sink to clean out my trach, but the clog was not in my trach, but lower, in a more distal area of the bronchus. I tried so hard to cough it out. Sensing I was going into panic mode from impending unconsciousness, I laid on the day bed, took a straw from McDonalds; cut it into half, and filled it with tap water and stuck it into my trach. This worked as a "lavage" and allowed the water to lubricate the HUGE snot ball up and out where I forcefully expelled it onto the carpet by coughing! It was a HUGE, bloody, gross snot ball that was trying to occlude my airway. Amen for a simple straw (we picked it up at the airport) that worked. My color turned from ashen cyanotic to dusky pink, and as I cranked the oxygen to 15 LPM, I pinked right up~! Another blessing today. My day was FULL of little "micro" miracles, and they were not just random things that happened by chance, but it was the hand of God that allowed me to keep my head on and breathe. I am so blessed.

So now it is the Lord's Day. Dolly got up at 6 AM to go to the gym. Me? Ha!!  Rolled over, coughed, and stayed in bed. But then I got up, did some CF stuff I do every day,, meds, pills, treatments, and then logged on to my waiting audience who emailed me to ask...."Where are You?"

Our lunch will be at EPCOT in the China Pavilion, then we'll scoot around the place for a bit, maybe come back for a nap and a refill of my LOX (Liquid Oxygen) tanks, and then it's to the British Pavilion for an authentic British meal tonight at 8PM. I will do better today, and besides, when you are in DIsney, who can complain?? This is the happiest place on Earth, right, so quit this belly aching and get out there and enjoy life, enjoy this special time with sister #4, Dolly, and lay down some good memories of Sisterhood. OK..time to close now. Check in with me later, OK?? And please pray for my health and safety, and for Dolly too. She left her 4 kids in Toronto to be here with me, and they miss her. SO we ask that you commit our time here to the Lord, asking for Him to cover us with His arms to provide us health and safety. And now that, my friends, is my que to get off this laptop and go out and play!! I'm having a Disney Day!!  Love Lori XOoOXx

Sunday Evening Wrap up...

It's now Sunday evening, nearly midnight, and since we got into our room, I have had many emails asking what we did today. So here goes:

Dolly woke up at 6AM and went to the gym. She biked, walked the treademill, and worked out for 2.5 hours, then came back to the room where I was still sleeping in lazily. We hopped on the monorail and went to EPCOT, as we had a lunch reservation in China. The meal was typical American take on what we call Chinese food. I had spicy Kung Po Chicken with white rice and Dolly had a very healthy Asian fusion salad with walnuts, raisins, bok choy, things I didn't know what they are called, and lettuces as such. Dessert was a failure. I ordered the Rice Pudding but it was nothing like mom and dads home recipe. I thought it would be white, but it was the color of red kidney beans and was not at all like what we call Rice pudding. 2 gulps and I was done. No more for me, or for Dolly too, after she tasted it. Then we walked around the world showcase and saw movies from the other countries, We were bad and had fresh pastries in France, which were so delicious! We hung around Morocco for a bit, just enough to be glad we don't live there, and then hit Italy, Germany, Britian and Canada. Canada was our favorite, hands down, but in the UK Showcase, they had Twining Teas which are very good tea bags, and good English bands playing music. I bought some English Toffee called "Quality Street" and Dolly had an Earle Gray Tea.

 

This photo was taken in Morocco with a real Moroccan native wearing a fez and Dolly wearing the ladies head dressing.

We then headed to the area where they have an attraction called Soarin', which is like a huge IMAX 3D movie where you appear to be on a ski lift as you fly across the California coast line. It was not at all scary for Dolly. She thought she might not like the motion rocking, but she did great and survived it wonderfully! Then back to the United Kingdom to Britain, where we later went to the authentic Rose & Crown Pub for dinner at 8PM. They had potato and Leek soup, stilton cheese and other things I had never tasted or heard of. Like Liver Paste. Dolly had a Field Green salad and I went right to the main dish of Beer battered fish and chips, served in a newpaper, with malt vinegar and salted too. It was PERFECT! They also had Bangers and mash, Salmon and Shrimp, Braised Corned Beef and Yorkshire and other things I have never heard of so I passed. Dessert for me was English Toffee Sticky cake. The meal was wonderful but hurried as the evening fireworks were gong to be lit in 20 minutes, PLUS, my oxygen was running on empty so we have to pack up and head right for the monorail to get home. Jumped onto the monorail to Grand Floridian, then up to the 4th floor for evening snacks which were set  out so temptingly, I took a few and headed to my room. Whew! I was on my last breath of oxygen when I got home. But what a grand day it was and with so much LESS drama than yesterday. Those prayers y'all offered up were answered and no harm befell us, other than a little bit of anxiety if I ran empty. But God stretched it until I put the card key into the door. What an awesome God.  This photo was taken in Morocco with a real guy wearing a fez and Dolly wearing the head dressing ladies wear.

Dolly is in bed now, sleeping, and it's my turn now. Please keep us in your prayers for my health. Tune in tomorrow folks, when you'll find out what we did on a hot, 75 degree sunny day in Florida!  Love Lori 

Monday February 9th...

What a wonderful day we had today! Amen for NO medical drama. Dolly got up at 6AM and went to the gym for her 2 hour workout. I didn't even move an eyelid until later, I started my day calling my oxygen provider to discuss a problem I was having with my equipment and it turns out that I blew the circuit breaker in my room by plugging in 2 things that required way too many amps into one outlet. How was I to know?? The portable concentrator plus my SeQuel Eclipse portable oxygen concentrator for the airplane, both tipped the socket to crash, and in doing so, it froze my machine out. Well I panicked because without it, I can't fly home on Saturday. Anyhow,,,,all was fixed except I have not alerted the mousekeeper of my room that the socket is blown.

Evidence of how healthy Dolly eats.

This is a serving of grapes, carrots and celery.

Dolly came back from the gym and napped, since I was on the phone going nowhere, she slept. We then headed to the Disney Hollywood Studio and spent all day there. We saw the Block Party parade, went on the Great Movie ride, ate in the Sci Fi Drive Inn movie theater in little mini cars, so they bring your food and put in on the dashboard for you to eat, and then we walked more and caught the Fantasmic light show. What a long day. My liquid oxygen tanks served me well and conked out the second I walked in the door. Whew. Then I threw on the spare I had in the room and I was pink again. But a real surprise was waiting in the room. It was a Disney cookie bouquet sent from BRIAN! Here is a picture of it. OK...Time for bed as I am exhausted. What a beautiful, hot day here today and medically, I did great today! I'm still pink. OK friends, more tomorrow.  Love Lori..

 

                                                                                                                                         Sci Fi Drive In Disney Cookie Bouquet

send from Brian

 

 

 

Yesterday I was so tired, when we got home to our room, we went to bed and I did not upload a commentary. So today when my nephew Lucas calls, he asks where was the stuff and the photos?? So tonight, I'll try to catch up. Here goes.

Tuesday February 10...

Our morning began while it was still dark outside. Dolly has booked a horseback trail ride and we have to get clear across to the Fort Wilderness Lodge. We hop a monorail to the Magic Kingdom, then get a bus. After a few errors, we get there with time to spare and Dolly is paired up with Reilly, her horse. He is a fine looking horse and off she goes with her class of 6 other riders and a guide for a 45 minutes tour of the back trails. She loves it! Dolly has a blast and enjoyed the event. I even captured some photos to prove she had fun!

When we finished, we took a bus to the boat dock, then hopped a boat to the Magic Kingdom, then rode the monorail to the Grand Floridian, where Dolly had to hustle to her spa therapy session. She had booked a day of pleasure and I pushed and forced her to do things to make herself feel really good. I told her she needs to treat herself like the Princess she is and coaxed (or coerced) her into a whole afternoon of pampering spa sessions and a massage too. Ohhhhh she came back refreshed and just had a glow in her from the relaxing treatments. Thanks Brian for making this happen with a gift certificate waiting for her Dolly upon her arrival.

Then we had a nap until it was time to walk over to the Polynesian for a Luau. It is a traditional show of Hawaiian and Polynesian cultural dances, songs and history told by hula dancing. They bring out the fire breathers who fiery throw sticks in the air and twirl them around without burning themselves, and they sing and tell a story about Hawaiian culture. It's a nice dinner event to do every so often. I have done it every time I come, but this time I was pleased to see they have changed the routine of the show. The second part of it is new material and it was better than the old routine, so now it's nouveaux and worth it. You'll have to email me or ask either Dolly or me what the queerest thing was about the show was. I can just say don't ask, don't tell. Get my drift? Weird happens even here at Disney. So then we walked home along the lake and went to bed, exhausted from a wonderful day and a great day at the Spa for Dolly.

Here we are at the Polynesian Luau with Leis around our necks

 

Wednesday February 11

This morning at 6 AM, Dolly is up and out the door on her way to the Gym. She does her workout for 2 hours then comes back and naps while I'm doing stuff. I had errands to do and one of them was to meet with the planning rep to plan and book my return visit to Disney in December with Vicki, sister #5. We make progress and get a reservation. Vicki......pack your bags!

Then we take a bus to the Animal Kingdom. We have a fun time there and Dolly really liked the African Safari where we saw real animals on the plains eating, sleeping and sunning. It was another nice day here with the high reaching 82 F...and NO SNOW! We walked around and did stuff, then had a buffet lunch at Tuskers House, which was African themed food and it was very good! The couscous was something new to try and delightful. Dolly put together a healthy salad and it was a neat place to try a new type of food experience. Eventually we sat down to watch the afternoon parade, where we saw this little lion boy and I asked his mom if I could snap his picture just because I liked his temporary lion make up. Here is the little tyke having a fun day and wearing the evidence to prove his fondness for the Lion King.

After the parade, we did a train expedition, walked around, shopped, dropped, ate at the Rainforest Cafe, and then came home exhausted. Dolly was on her cell phone to the kids at home when the fireworks went off outside our balcony. It was awesome! Dolly talked to Lucas who wanted my web update posted so he could check in on mom, so here it is after 11 PM and I am working on it so I can upload it real soon. I hear ya, Lucas. OK....another wonderful time with my sister, who deeply loves her children and is too busy and happy now to miss them. Home on Saturday night them back to the snow and cold for her. But today, tonight, we are here. She is dreaming now, and tomorrow, new surprises await! We have breakfast with Disney characters in the Magic Kingdom, so I better get this done so I can head to bed too! Even I need to sleep while here, despite the opportunity and pleasure to stay up and out all night long. Hey--it's Disney...you CAN do that!  More tomorrow, Lord willing,  Love Lori.

enjoyed the whielpool, sauna, and quiet rest

Thursday February 12

Another awesome day in the Kingdom of Disney. We woke up early and headed on the monorail to the Magic Kingdom for their 8AM park opening. We had our pictures taken with Mickey & Minnie and then got on the Mad Hat ter Tea Cups and took a spin. Then we hopped onto the train and took a whirl around the park and then had brunch in the Crystal Palace, where Dolly was hugged by 2 furry friends. See for yourself. Here is the evidence. She was mugged, or hugged,  whichever it was, by these raga muffin things. She said their names were Pooh and Tigger. Then I parted ways with her and went all over the park exploring while Dolly went to the Grand Floridian Spa for the afternoon. After her 2 hour gym workout, she enjoyed the whirlpool, sauna, and quiet rest in the health club before coming back to the room to meet me in time for our dinner date. We had just a short walk to Narcossee, which is a restaurant right here on the property.

We had an wonderful dinner at Narcossee, and we asked for and were given a great seat to view the Wishes fireworks show, which was spectactular.

Then we strolled back quickly to our room as Grey's Anatomy was just beginning and Dolly has to watch that show every week. So that was our today, but in a very short, brief version. There were other notable things, like our excellent server at Narcossee named Janet. Plus the Grand Floridian conciergo hostess named MeJay, who has bent over backwards to help me with my wants, desires, and complaints. Everything has come together to make this a wonderful vacation for Dolly and for time to celebrate as sisters.

Now, since we leave Saturday, and tomorrow is very busy for us, I will log off here now and NOT post anymore until I return home. So you will next hear from me when I am home. That way, I can log off this account and close it out, pay the bill and pack my lap top for the flight home. What is the take home thing from this?? Tell your special sister, brother, parent, cousin or whoever is that special person in your life, how much you love them today. Don't wait until some other time down the road. That time in NOW. Tell them how special they are to you and you Love them. Then move on. But tell them. OK.....to Lucas who reads his Auntie Lori's web page to check in on his mom, she is coming home in just 2 days, Lukie....so hold on, and hug her really hard when you see her on Saturday, OK? Your mommy missed you all so much,, but she also needed this time to have some fun for herself too. Being an adult is hard. She just needed some fun. So to my sister Dolly, THANK YOU for the precious memories and the laughs we shared and tears we cried. Time for my bed. I have another big, exciting day tomorrow! Hugs from Lori

Wednesday February 18

It's now many days later, but I am not yet settled and made time to do an update before now. I got home perfectly and without problems. Dolly too. But then the snow came and the weather was not 82 degrees in Toronto. Since getting home, I have done laundry, unpacked, gone through tons of mail, paid bills, mailed mail, tried to sleep, and done everything except rest! It's be a calm hectic time here for me getting my feet back on the ground after a world wind past month. From Duke to Disney in less than 24 hours was incredible. So many of the staff at the Grand Floridian welcomed me home, even our Mousekeeper remembered me from my October visit with Donna. Same room, same Mousekeeper. Awesome. My plans include a return visit with sister #5 in December, but this time for 2 weeks. This is all up to the Lord's timing, as it can be skipped if either parties are sick and not able to travel. So Lord willing, Vicki and I will be back in December.

When I got home, I was kinda feeling let down. Now I have to make the meals and it is not being handed to me anymore. Sure was nice to be a VIP on the Concierge floor of the Royal Palm Club at the Grand Floridian. Sure was nice. Now back to life.

Today I received a gigantic-enormous flower display from Dolly, as a Thank You to Brian and I for our hospitality during her trip. This basket is HUGE and full of vibrant, Spring flowers! Thanks Dolly!! OK friends....Time to go nap now as I am tired. Hugs to everyone for checking in with me, Lucus Hayes included. Love Lori

Sunday February 22

It's a tad bit chilly here today but no where at all snowy like my sisters are experiencing in Toronto. It was raining on and off today, and it's only about 52 degrees out, but don't take that as a complaint, OK??

I spent most of all last week tired. I was exhausted and all I wanted to do was sleep. Sleep. More sleep. All I can think of is that my whirl wind travels around Disney having the time of my life with my sister, really tuckered me out! At least it was nothing medically wrong with me. Just rat bone tired. I never left the house in 7 days. Tomorrow, I'm fixin' to go out and run some errands, and get back into the swing of life. Plus I have as my goal, the task of returning to work to take on some shifts. March is too nice a month to blow it away sleeping. I've got all of eternity to sleep in the ground and rot. (actually, I'm being cremated...) So wake up Lori and get moving!

While I was gone for 3 weeks, Brian neglected to feed the birds. I have a large feeding station in my yard with lots of feeders and when they ran out empty, they remained so. Well then the birds began to look elsewhere. When I saw I had no bird activity, I was miffed. I work hard to keep my songbirds happy and singing to me, and I feed them the right seed to entice them to stay. And they do stay. OK...so 3 weeks without food meant they took their loyalty elsewere.....but they are back!

I have hung oranges and put out grape jam for the Baltimore Orioles, put Nijer in a sock for the Goldfinches, and made sure the birdbath was full and clean. I also replenished our supply of live mealworms, which they love, and put up shell-less kernels in the feeder. So now the birding community is attracted back again and they are happy, hungry, and clean.

I had about 150 Grackles dominate my feeders yesterday and that's not nice. They are the "bad seed" of birds and are trouble makers. They take over the whole feeder and scare off others from eating, and they are meanies. To get rid of them, I put out servings of Safflower, which they hate, but the others all love. So within 30 minutes, the Grackles were gone. Now my songbirds are having a nice afternoon feeding and bathing in my bird sanctuary.

You didn't know I am a "birder"? Oh Yes! I can identify a few and enjoy watching them from my bedroom window as I sit on the ottoman. The cats too, enjoy watching their antics from this side of the window. Our 5 cats are all in-door furries, so no killing of songbirds by them. Plus the birds eat 1000 times their weight in insects, and Purple Martins love mosquitoes and their larvae. Anyhow.....that's my little corner of the world where I find happiness....watching the various songbirds at the feeders. Now if I could train Brian to refill the feeders when they are empty...hmmm.......Love Lori

Monday March 2

We had a light dusting of SNOW!! Enough to throw the morning commute into work into chaos! People here CAN'T drive when this happens. They are so very not prepared for this interruption and getting downtown to Naw-fick (Norfolk) takes nearly 2 hours, as it did today. Such a little thing causes an upheaval here. This happens one day every 7-10 years and today was that day. A friend called us and he lives tot he west, about 3 hours away and he reported 10 inches of snow! If we received more than a light dusting, I'd feel right at home.

No less bird activity with this colder weather. I had at least 25 gold finches chowing down on Nijer and sun flower seed and today, at about 5PM, I saw my first red cardinal of 2009! Oh she was so beautiful! She even got aggressive when the other Mourning Doves and Sparrows tried to home in on her ground cover and take the seed. Today I went out and bought 20 pounds of cardinal food mix, so the timing was perfect! God's little feathered creatures are so interesting! I lifted Tucker cat on my lap and let him look at the feeding frenzy and he was amused by all the flight and fight going on. Our cats like to look out the bedroom window at the birding activity. As they are in door cats, they are not killing our songbirds and doing this is natural behavior to them. Anyhow, slowly, migrating species are returning home this way.

I am hanging in but I'll need a tune up soon. However, not until I finish some work related training out of town I am going to later this week. I am looking forward to going with my friend Donna and co-worker David to a forensic medical investigation training course. Just to get you interested, the agenda is this:

So those topics will be discussed. I am still thinking back to the happy memories with my sister Dolly just a few weeks ago at Disney! The times she was so happy and relaxed made it worth it. When Dolly was at the Grand Floridian Resort & Spa, she whooped it up getting pampered. Something Brian treated her too because he knows how precious my sisters are to me and when they are happy, I am happy. Memories....Thanks Dolly! Lord willing, my sister Vicki and I will be at Disney in December for 2 weeks. Plus my same friend Donna from above, will join me for 5 days before Vicki arrives, to keep me company and so I have a dinner mate each night. Donna loves the Grand Floridian and she comes and goes and likes to take Disney tours. We meet up later for dinner. She is a great room mate and travel partner. Thanks Donna! OK....this is just to catch up a bit so y'all know I am alive and not dead...yet.

Keep me in your prayers please.

Love Lori

Tuesday March 10

I had a wonderful time at the Medical Examiners conference alluded to above. Thank you Donna and David for going with me, for driving, and for the company. And "NO" Donna, you did not snore.

The weather here is beautiful. I spent all of yesterday outside doing work around the house. Changing 8 light bulbs, sweeping, taking care of the bird feeders, and many other tasks in the open sunny outdoors made for a complaint free day, Amen!

My sister Dolly called in the afternoon and it was wonderful to chat with her. She still has a happy glow from her week at Disney. I was the right thing to do with her.

I am feeling OK. Not my best, but not struggling either. My CF bugs are doing their covert thing in my lungs as my sputum is turning nasty, but today, for now, I am home.

In other news....

Obama OKs embryonic stem cell research; actions are immoral and ineffective

President Obama has given the ok to destroy human life in the name of scientific research.  

Embryonic stem cell research is immoral and ineffective.

It is immoral because it destroys human life at its earliest stage of development by harvesting the stem cells for body parts.

It is ineffective because it has yet to be used a single time in any therapeutic application.  

Researchers must get their funding from taxpayers for embryonic stem cell research  because they can't convince private sources to invest.

Private investors know there are no proven uses for embryonic stem cells.

It's all hype, hope and theory.  

But adult stem cell research, on the other hand, is ethically benign and is already being used to treat over 70 diseases and conditions.

If taxpayer dollars are going to be spent on stem cell research, that's where it ought to go.  

By reversing funding restrictions on embryonic stem cell research, President Obama is making every American taxpayer complicit in immoral, life destroying research.

This is a terrible example of political ideology trumping sound science.

Even though I have Cystic Fibrosis and some welcome this change with open arms, I do not.

It will not lead to a cure for CF, but it will kill human life trying.

This in unacceptable.

I'm not going to beg you to go protest or write a letter, but to pray.

Pray that "They will be done..." and that God will see how foolish man is to destroy the very life HE gives us.

Hugs from Lori

March 28

I've been naughty. Very naughty.

I haven't updated this page in 2 weeks. No excuses. I wasn't dead. Not on vacation. Just that life got busy for me and I took it for a ride. It's something we all do, right? With Spring springing, there is much clean up and work to be done, and I've been doing it. Just stuff around the house. We have 5.54 acres of land, and it takes time to groom it, keep it tidy, and wait for the rain to stop. We had back to back to back days of non stop rain, such that our fields were flooded out...but that is good! We need the rain so badly, and so we welcome it. The algae is blooming too! Lot's of green algae climbing the exterior walls. So I've got to deal with that too. These are not complaints, but rather things that have kept me busy....

In more news, a man I know locally received a heart transplant 2 days ago. Amen! My ladies prayer group prayed for him on Wednesday, and 36 hours later, he was in the OR getting a gift you can't put a price tag on. As deep as that thought is, some grieving family did something wonderful. They donated the organs of their loved one in their darkest hours. In doing so, perhaps the darkness lifted some. Perhaps there was some small measure of joy in doing something so very altruistic that accomplished greater good for mankind. Amen for that family. Thank you Lord, for the donor.

I am waiting on a bed at Duke. Time for a tune up again. Revolving door. They asked if I'd be able to come on Sunday, and I said Yes. So I'm packed and waiting for a phone call to say "Come". Then it's happy happy joy joy as I am in a small room for the duration of treatment on strict isolation and lock down. No leaving my room, no going to the cafe for food, no going to the gift shop for magazines. Do not pass go. Do not collect $200. This is my life at Duke. But I can have visitors! My Duke friends Jennifer & Phil do come by to cheer me up. Sometimes I bribe them to bring me some things. I wish the floor there at Duke had a treadmill. I have offered to BUY them one for patients to use, but no. They say they don't have an inch of space to store it. But when I am on lock down, I NEED TO EXERCISE. The treadmill is perfect. It folds up for smaller storage and let's me get off my butt and walk a bit. I'm going to push them on it again this admission.

SO time for a CF tune up because my nasty lung bugs are nasty. In asking for a tune up, I have to be ready to commit to having a surgical procedure to insert and sew in, a venous catheter in my right femoral vein. OUCH! Sometimes I am not up for the beating, and so I delay. Even when I know I've got to have it done, I am not pleased and resolved about it. The dam surgical intervention HURTS! I cry on the table while they are doing it. Yet....this is my last life line, so even then, I have to remind myself I am grateful Duke can offer this to me. So quit your belly aching Lori and buck up! Time for another femoral line....

My songbirds are enjoying full feeders and clean water for their baths. The raccoons come out in pairs every night to raid the bird seed, and then the possum comes to get the left overs. Brian says they are fed better than he is.....

OK.....I'll take my laptop with me and get email there. Please keep Brian and I in your prayers while I am away at Duke. Pray that these CF bugs are treated as best they can be, and that Brian is blessed while we are away from each other too. Chat again soon, Love Lori

March 30

I'm back at Duke. The admitting process went very smoothly. No waiting for a room for hours in the lobby this time. They said to show up anytime from 6-7PM and so I did. No worries. Nothing happened last night with regards to starting IV therapy. That's because I'm waiting to go to have a femoral line surgically inserted into my groin sometime today, and THEN the meds will begin. The team decided to go with the same triple IV cocktail that I had on my last admission because it worked. So that is the game plan, plus they sent off sputum to the micro lab to see which wee beasties are giving me trouble again this time. They can change from admission to admission, so you are cultured each time to see what's going on in them thar cystic lungs.

A knock at my door brought Vallory. She is the Rec Tech who I first met during my last visit. Check January 28th of this diary to read about her. Well she read my web diary and saw that I was coming in and so today, she came for a professional visit. Did I want any puzzles? Any card games to play?

How about a paint by numbers activity to keep me busy?? Plus also just a good old fashioned "Hello", I prayed for you! Cool, eh?

Another knock soon after was from the CF Social Worker named Bill Taub. He checks for his CF clients when they are admitted and comes to chat. We hardly ever talk about social work things. Nope. We talk about theatre, broadway plays, and his wonderful daughter.

Here is my Duke web mail so you can send me a greeting and some news about you.

Click to send Lori a Duke eCard Room 7811

I will close now and ask for prayers for both myself and for Brian. It's always hard on him when I am away for 3 weeks and he is at home alone.

Our neighbor Ruby send him a food bundle of goodies to keep him happy for a few days. I know he's eaten half of it already, it was that good! Thanks R&R for being wonderful Christian friends. Now it's up to the meds and the Lord, to heal me. Trust Him, Praise Him, and claim the victory of healing!

Chat again later, Love Lori  xxooOx

March 31

It's just past midnight on Tuesday morning and my ceiling is leaking....badly! I kept hearing..."drip,drip,drip" and finally got out of bed to adjust the tv when I sloshed into a puddle of water! The ceiling tile above the TV, in the corner, is saturated with "rain" and it is dripping down. I just called for the nurse and told her my ceiling is leaking, and she said she'd call the environmental people (housekeeping) to come ASAP. The ceiling tile is 18x18 square and I know there is not a bathroom directly above it, so I'm guessing it might be the air handler for the air conditioning unit. I have a bathtub full of water on the floor! Wow...what excitement!

12:55 AM and the mechanical guy just came. He was wowed too with the water on the floor. He left to go get something elsewhere and will come back soon. He jokingly asked if I was watching a movie about Niagara Falls or something.....nope.

While surfing the internet, I came across a web site that is loaded with over 5,000 documentaries of all kinds! It's true....I LOVE documentaries!

I don't do well in fantasy land or roll playing games and so my niche has always been reading or watching documentaries because most of what you read, see or heard, os said to be truthful. So imagine my delight to find  Journeyman TV @  http://journeyman.booserver.com/

I have thus far watched a few, maybe 3, shows already, I signed up for a whole year of view pleasure and it cost $153 US. An expense I can afford when you can browse over 5,000 titles to watch. It's even cheaper than 4 years of subscriptions to the National Geographic. OK,,,when I'm done here, I'll jump on over to Journeyman TV and watch a flick or 2....maybe even 3. We'll see.

Oh yeah! Praise be to God for allowing the femoral catheter to get in it's pace and do it's job. I went down at 2PM yesterday and after much, much displeasure and awfulness, I had a line. This was my 14th femoral line for IV access, and the scar tissue and adhesions at the site made it difficult to get the IV line into my groin. Each attempt is more painful than the one before, again, due to scar tissue. When I am on the OR table whimpering under the sterile sheets, I have regrets about coming in for a tune up.Why? Because it ALWAYS ends up like this. And I feel sad that I got the ball rolling by asking the CF team to admit me. Maybe they think I have no qualms with it because they don't hear me complain...but I am screaming inside while I am lying on the table and they are hurting me. So I cry. And I pray. And I sing to the Lord. I know there are Angels with me there while this is going on, co I do feel some measure of comfort, but I really wish my tune ups did not depend on a femoral line for IV therapy EVERY TIME. Such is life. My life.

In all that I do, I should seek Gods comfort and rest assured in His love.

The engineer is done for now. Someone will come back in the  morning to finish off the job. For now, it's lights out for Lori.What excitement!

Hugs until later today, Lori.

April 1

I hardly slept last night. Just a cat nap here and there, because I was coughing too much, which set the vent alarm off non stop, The nurses kept peeking in the window of my door to check on me, and I was OK, just awake and coughing. So I finally just unhooked the vent from my trach and put on the humidified oxygen instead and dozed off.....

I woke up to another day and a new sunrise here at Duke.

My Arrow Triple Lumen femoral line is wonderful. Holding its own and doing its job nicely.

I told you last time how dreadful it was going in, right? Oh Lord....it is never easy to get it into a vein that has been stabbed 13 times before and is full of scar tissue. But it works and I paid the painful price again.

Duke is having the CF walk on Sat April 18th but in talking with them about it, they of course interjected that I can't go to it. It's a big friggin field out there and they are worried about me and my germs. Rah Rah, come raise bucks for CF, but NOT if you have cepacia. It always sucks how the sickest of us can't do much of a dam for CF since we are told not to come, show up or participate. Sucks.

Surprise surprise, Dr. Kussin came to see me today. He said he just finished a hellish month in the ICU and he is drained. but since he knew I was "in house" he came by to see me. Awesome! I asked him about the offer of a new treadmill but it comes down to the floor not having any space to store it, Then he came up with another suggestion....why not buy a Wii Fit? I told him I didn't know much about it. He said he's ask someone to come tell me about it and to show me some web sites about it. Perhaps that would be better if I got the floor one of those Wii Fit units? It's an interactive fitness module for a tv, I'm told. Sounds promising. I know my friend Donna has one, so I'll ask her about it and get her take and opinion about it.

Today the teams changed coverage, meaning end of the month, new doctors. Dr. Hargett is now covering for 2 weeks. Nice guy. He even inquired how our Sugar Gliders are doing. Plus he knew I hauled my butt outta here last admission to fly down to Disney and he asked about that too. I told him I had a wonderful time and it was worth all the effort it took to get there. Priceless.

So I am getting Amikacin by intravenous every 4 hours, Vancomycin every 12 hours IV, and Fortaz every 8 hours IV, plus a few oral antibiotics too. No diarrhea yet....give it a few days then wham! it hits me hard.....I had a small increase in temperature last evening, but today, it was gone. Thank You Jesus! Don't need fever and chills right now.

Brian is coming down this weekend to visit. He is doing the PBS fundraiser at work and that has committed him to be in the TV studios from 11 to 9PM most days, but on Saturday he'll leave to drive 4 hours to see me. The hospital booked him a room at the local hotel he likes and they get us the super cheap medical rate of just $35 a night. The rate is really $139 per night, so paying this reduced rate sure is a real blessing. Thanks Lindsy for booking it. She is the PRM (Patient Resource Manager) on this floor whose job includes doing this for patients. If you are really nice to her, she'll even give you a parking pass to get your car out of the parking garage.

OK...nap time for Lori. Know that I covet and appreciate your prayers. That I get lonely in here, and cards, emails and phone calls are always so cheery events for me. I'm at 919-681-7811 while at Duke.

Also, a special THANK YOU goes to my seamstress neighbor named Ruby. She undertook the task of sewing me real cool pajama bottoms while I'm in the hospital and now I have the funniest pjs around. No lame "hospital property...do not steal" pjs for me. Nope. now I have crime scene---do not cross, dancing skeletons, meow puddy cats, and black cats for Halloween,,,all made into pjs for me. The staff have commented on what neat and new pjs I have on, and I tell them my neighbor Ruby made them for me. Go RUBY!! Thanks so much......Love Lori  OXXxo

April 2..  Late Night Edition......

I go a Wii unit and a Wii Fitness module for ME!!!

You'll never guess how I came to get one as a gift, so I'll tell you.

My friend Donna has one and LOVES it. So when she saw them on sale this weekend past, she went and bougt another Wii Fitness module just in case she knew someone who wanted one. Kinda like having a spare in the closet just in case. Then today she reads my eamil about me thinking about buying the whole kit n' kaboodle and she gets her husband Jim ti gi back to the same store to buy ME the Wii unit so that I can now have the very gift I was looking to gift to Duke!

Donna called me this afternoon but I was kinda groggy and she did not let on what she did (that she was going to give them to me) and when she asked if I wanted her to come visit this weekend, I fluffed her off saying a 4 hour drive to get here is too much for just me, but that Brian was coming this weekend so I'd have company. I did not know her motive was to bring me a Wii unit and a Wii Fitness module.

Donna emailed me later with a photo of the new boxes she has just bought for me (see below) as proof she went out and got them. She said the Lord has been telling her heart to do this and WHAM! I was the one to be getting it! Here is Donna's email to me this evening....

Lori!
All day, I have been feeling that the Lord wanted to get my attention. I came up with the idea of a Wii and Wii Fit for you several hours ago. I was so thrilled to have a Wii Fit (one that I bought on Sunday - an extra one). So tonight, after I talked to you, and you sounded sorta down, Jim and I zipped out to Best Buy to buy a Wii to go with the Wii Fit for you.

THEN, we came home and got Mike Moore to take our photo with it.

THEN, I emailed YOU.

and

THEN, I read your website. While I support entirely Duke getting a Wii Fit if you want.  This unit is for you and for Brian to enjoy - please take it home with you at the end of this stay. I have loved mine so much and just know that you will also. You can exercise slow and at your own pace. It's fun. This set is for my Lori and Brian. (I know I'm not being as generous as I should be. I just think the Lord gave me this thought for you and apparently gave it to Dr. Kussin for you too but in a different way).

Love, your selfish friend,
Donna

 

See...there it is.....I am being blessed! Thank You to the whole Price family for your generous gift to us. We love you too!

Now I'll get back into bed, and sleep with a smile on my face. Amen for wonderful Christian friends!

April 4, just past midnight...

It's just past midnight on Saturday morning and I am up coughing. Too sore to sleep. My chest wall muscles and ribs are too tired from coughing and my throat is sore....all of me is sore. I had a very lazy Friday doing nothing much. I spent hours on my laptop doing things to keep me busy and spoke with my family. Apparently my family has been told I am NOT a patient at Duke. When they called to find my room number, the operator said there is no patient here named Lori Morris-Hughes. My family asked her to search again because they knew I went in on Sunday. Oh dear....If she died, maybe they removed her name........So then they ring my cell phone and are delighted !!!! to hear me answer it. Curious too, when I hang up the phone, I too, call the Duke switchboard asking them to tell me if I am a patient there now. "Nope". Get outta here......true. The say I am not an admitted patient. I tell the nice lady I AM in room 7811 and have been since Sunday. She tries variations on Morris-Hughes, Hughes-Morris, Lori Hughes.....etc but nothing. So now I am not here and I am not occupying room 7811. Blue Cross is going to have a field day to get a bill that I claim I wasn't a patient for. Fiscal accountability.  Whose minding the money?? Probably Dumbo-craps who are leading this nation to its knees in financial debt and misery.

I had a good Friday and Brian went to pick up the Wii and Wii Fit that was gifted to us. He will bring it today when he comes to visit me, that is, IF he can find my room here with me in it at Duke. If I really like the Wii system, then we might donate a new one to Duke. We'll see. OK....I'll write more later today when Brian has arrived and I have stuff to talk about. Love Ya, Lori

April 6

Yesterday was Sunday and I had a lovely stay here at Duke with my husband Brian. He treated himself to his usual dinner meal of Sockeye Salmon on a hickory plank, with sweet potatoes and grilled veggies, while I had a serving of sugar free Jello. He was happy to get a room at the local hotel we like and that is where he called ahead to have his dinner meal ready for pick up after he left here about 9PM. He spent all of Sunday here with me in isolation and he was scheming a way to get me out without the staff missing me. We didn't act on these compulsions to slip away....

In breaking news, the new Wii components arrived and my nurse Angela set it all up perfectly for me! She has one at home, so took charge of getting it up and running and it was wonderful to skip reading through the manual. Thanks Angela! So I tried the Wii sports module and did pretty well at the Baseball and Tennis games, terribly at Golf, got murdered in Boxing, and then switched to the Wii Fit module after that. What a comprehensive game! A real 'motivator" to get up and do the fitness stuff every day. When the board weighed me, my little "character"  plumped right up in proportion to my BMI, and it was a little fat character. Reflected me well. OK...so I likes the mogul skiing and tried some ball balance games, then sat down to rest. Brian tried it too, and played along on the sports games. I will take this moment to THANK the friends who donated this brand new Wii unit to me and the Fit module too, so to Donna, Jim, Carl & Dale Price, Thank You and God Bless you for this perfect gift to Brian and I. It's a whole lot smaller than the treadmill I was looking to buy Duke and far more interesting and FUN! So now my plans include deciding if I'm going to buy the same Wii package and gift it to the CF & Pulmonary floor here at Duke. With the understanding that when I am a patient on the floor, I get first dibs on it!  More news later.....

April 7

It's just passed midnight on Tuesday AM and I'm awake watching THE game every tv set on this floor is tuned to...The UNC vs. Michigan Final Four Basketball Championship. Now I really don't care for most sports and don't watch or cheer for any, but here at Duke, there is an intense rivalry with the other school just 8 miles down the road, UNC. Many of the nurses wore Carolina Blue today to show support for UNC. So just after midnight, the game wrapped up with UNC winning the title. Wahoo!! My nurse Kristen, is wearing her Carolina blue shirt tonight and she just came in to hang my IV med and we chatted about her winning team. Go Carolina. The reason I put in any effort whatsoever to cheer for Carolina is because I sit here in the house that Coach K built. Duke wants to be the best at everything and being a private university, it takes $$ to go here, whereas UNC is a public school and they'll take the poor black high school drop out as long as he can shoot hoops. So just to be adversarial, I cheer Carolina Blue. Another reason I won't cheer for Duke is because their mascot is a devil, a symbol I don't like and so I won't wear clothing with the Duke Blue devil icon plastered all over it. Nope. My father, if he were alive, would burn any clothing I brought home with a devil on it. Flat out burn it. So to be obstinate to Duke, I cheer for UNC. And tonight, they won!

Yesterday was a dreary, rainy, overcast day and so I was not motivated to do anything except breathe. I have not yet turned the corner for the better. This is unusual for me. Usually by day 5 to 7, I can state I am doing better and begin to grumble about sending me home soon. I begin to feel better, less SOB, sputum is not as horrible, I can get in short naps, and my cough is less bothersome. All benchmarks to indicate progress for me. But nothing yet. I might be discouraged by now, but I know any day I can tip the scale in my favor and feel I'm on the upswing and benefiting from these thousands of dollars of IV antibiotics. Hmmmmmm.....Nothing. Nada. Stupido! I'll write more in about 10 hours, after some needed sleep. Good Night. Love Lori.

April 8 @ 9PM
What a difference a day makes. This morning, Dr. Kussin came to see me. I knew then it was not for a social visit. He was the bearer of news we needed to discuss. Here is the email I sent off to many of my email contacts, knowing I can ask them for prayer support and they will do it. Here goes:

Dear Friends,

 

I'm still at Duke on day 10 for a CF flare-up in my lungs and so far, I have not had the turn around we usually see by now. The combination of heavy duty antibiotics I have been receiving, has hit my kidneys hard.

Today the big cheese himself, Dr. Kussin, came in to see me.

He said my kidneys are doing strange things... and this is not good.

They have stopped all the IV antibiotics, are super hydrating me now, and will draw more labs today and tomorrow to see if my kidneys are showing signs of bouncing back.

My prayer is that my kidneys will return to normal, as expected.

 

Dr. Kussin also told me I have a new CF bug growing this time around, but he wanted confirmation it was there so they sent off more lung snot to re-test it again.

My prayer is that this was a lab error and that I am NOT growing out this new bug.

He said adults with CF who get to my age, always will grow this bug eventually, and it's not a surprise to him.

But how to treat it is the issue since my kidneys are rebelling at the intensive antibiotic treatment for this bug. Hmmm...

 

So this is where YOU come in.

I am asking you to pray for me, right now, wherever you are.

Just talk with the Lord and ask that His will be done.

Selfish me is asking for these problems to go away forever, but perhaps that's not His will for me.

So I have to change my attitude and be humble when I ask for the Lords will to be done.

Whatever He has as the plan for my life, has always been decided by Him all the way along this journey called Life.

And I am at Duke....a wonderful teaching hospital who will know what to do when they have all the evidence.

 

I called Brian right after the team of doctors left my room and I told him what was up.

He then led us both into prayer, right there at his work, asking for the Lords will to be done.

God gave me a precious gift when He sent Brian to be my husband.

April 18th will be 11 years married to the sweetest soul-mate matched just for me.

April 19th will be his birthday.

 

So now it's mega fluids, lots of IV fluids, water, anything to flush out my kidneys........and then we wait and see.

Please share this with any person you so desire.

MORE prayers never hurt any person, ever.

So bring on the prayers.

I remain your Servant in Christ,

Love Lori

One email reply I received from V.V., had this in the letter to encourage me:

“What things so ever ye desire, when ye pray, believe that ye receive them, and ye shall have them.”

The word says that it will work out, so say only what the word says. Jesus says you can have what you say. Continue to say it in faith from your heart and you will release the ability of God within you! Please continue to be strong and pray the answer, the desired results, and not the problem. I will pray, pray, pray for you and Brian, and speak God’s word.

Click to send Lori a Duke eCard Room 7811

Now it's beddy bye time for me and I wanted to update y'all. I've listened to them and have done as they asked...to gulp down more fluids to flush my kidneys, The IV cocktail I was on rotated between Amikacin, Vancomycin, Tobramycin and Fortaz. It was a learning experience to understand how dangerous (nephrotoxic) these drugs can be when they are combined, on your kidney function. We found out this cocktail does not work for me, so it has been stopped to allow reovery of my kidney function, and they will tweak the drugs so my CF lung bugs will get their needs met too. Ohh....the joys of CF!

For the many internet friends who prayed, shared the email with others, and called or wrote, Thank You. My sisters called and cried along with me, and prayed with me too. It's a legacy of being brought up in a Christian home where everything was brought to the Lord in prayer. I love all my sisters so dearly and treasure each for their unique personalities. Thanks for being my sisters (Not like you could help it,,,,but still, Thanks!). For my email buddies, I appreciate your support to offer to pray for me and to pass my needs on to other prayer lists. God is the God of love and compassion. He knows and understands everything before He calls it into action. He wants us to TRUST HIM for the outcome and He loves it when we bring our worries, wants, desires and praises to Him.

I've had more blood drawn and tomorrow morning when the team rounds again, I'll have a better understanding of how the healing has begun. Look for an update tomorrow, here.  With much love and Thanks for YOUR life too, Lori.

 

April 9-Cautious Optimism

The pulmonary team just rounded on me and this is what we know:

My kidneys took a hit from all the antibiotics I was on for my CF lung bugs

Today's lab work shows I am holding steady and not any worse

My Creatinine today was 1.3 milligrams (mg) per deciliter (dl)

Yesterday, my Creatinine was 1.4 milligrams (mg) per deciliter (dl)

The goal is to get mine down to less than 1.0 milligrams (mg) per deciliter (dl)

My doctor said I am "not out of the woods yet", but if your level keeps dropping, we'll be very happy....

So that is the latest update. We are also going to continue to hold some of the antibiotics that pushed my kidneys to the max for a day at a time and see how I respond. The game is to find the balance between not squishing my kidneys to the max, yet getting some therapeutic benefit from the antibiotics for the CF bugs in my lungs.

The micro lab is still growing out my second sputum to see if I come up with the new bugs they found in the first sputum specimen.

Then it becomes a 'hit and miss' attempt to determine if we go after the bug and treat it, or leave it alone until it causes me distress.

The treatment for this new bug is very hard on your kidneys and liver, so perhaps we hold on and watch how I feel, before we jump full in.

Where is God in this whole picture?? Right where He said He'd be....right next to me.

He's calling the shots and I believe I will come away from this tune up healthier than when I came in and with normal kidney function.

The power of prayer and the positive belief that God is THE Great Physician, always brings me back to His loving arms in times of distress.

I was emotionally lifted up when I received all your email replies to me telling me how God would be walking through this right along with me.

That my faith and trust have brought me this far in life, and to count on it (faith) to continue pointing the way to me.

You have wrapped your arms around Brian and I in Love and we feel it.

Thank You for your words of encouragement and praise!

Brian and I have come so far as a married couple in terms of trusting on God for His blessings and giving our worries over to God when we are overwhelmed. Brian has come through a few close calls when I should have died, and he's always there at the bedside when I need him. He signed on for this when he said "I do", and he has not bolted for the door or run away from that commitment, Praise the Lord! Living with CF has not been an easy part of life for Brian. He took it all on when we married, and "through sickness and health..." Brian has remained faithful to our wedding vows. Amen! Next week on the 18th of April, we will have been married 11 years. Looking back 11 years, I NEVER thought I'd have lived this long!! Brian KNEW he was marrying a sick wife, but he wanted the good days to be my best, and the bad days to be few. I think he got screwed....cuz the bad days have been very bad sometimes, and 3 times, I was at deaths door, knocking.....yet God saw fit in His wisdom to allow me to recover so I could be returned to Brian. Some day, for all of us, my time will come. And what a glorious day for the Christian believer, that day will be. For now, I am firmly grounded and planted here on planet Earth, with the hope of today to get thorough. If tomorrow comes, it will be a Bonus for me, but not a guarantee....and that's not just applicable to me, but to EVERYONE living.

Be thankful for what you do have today, not what tomorrow will take away and for what you won't have.

Live for today, cuz tomorrow you could be dead.

Tell that certain someone how much you really love them.

Tomorrow might be too late.

Please continue to bring Brian and I to the Lord in prayer.

I'll update more as I have stuff to share.

Love from Lori

April 10-Cautious Optimism, continued...

Another fine day here at Duke. It's Good Friday! The team rounded early this morning and they said my kidney labs are the same as yesterday. My creatinine is holding at 1.3 milligrams (mg) per deciliter (dl), which is good because it hasn't climbed higher, but it also hasn't dropped. So we continue to give my kidneys a break from the hard hitting antibiotics yet don't stop them all together. We stop one, add another, run it over a longer time at a reduced dose, force drinking lots of fluids, and pray that tomorrow, the level drops just a bit in the right direction.

It is up for discussion whether to treat the new CF bug in my lungs. The treatment is pretty harsh on the liver and kidney, and mine are already revolting. Perhaps a CT scan ought to be done to show if there are pockets of this new infection throughout my lungs. The bug being there in the lungs does NOT automatically mean I am colonized. One can have a bug but it does them no harm. It's only when signs and symptoms of invasion appear that it needs to be looked at. Things like fever, swelling, redness, a rash, increased cough, etc.

I had a nice later afternoon visit by the CF Social Worker, a guy named Bill, He comes to the floor and looks at the name board for familiar names of the CF patients he sees in clinic. I enjoy his visits since I don't leave my room and rarely have visitors. After Bill left, the Recreation Tech came by for a social visit. Her name is Vallory. She is a young college kid who works on the oncology wing where everyone has cancer. She comes to see me because I am locked down in isolation and can't get out to roam around, so my sanity is at risk. Well Vallory brought me the sweetest, hand made Easter card and a cup full of goodies. It was an Awwwww moment to get a few Easter treats while on lock down. That is her in this picture, delivering some goodies to me.

This is Easter. What a wonderful time to bring families together to celebrate not a fluffy bunny, but the sacrifice one man made just for me. So then my thoughts turn to His pain, and agony while Jesus was beaten, bruised and spat at, just for me. I don't deserve His love. I am a sinner. Yet He knew He was to die, just for me. One day, when I die, I'll face God in Heaven. He'll find my name written in the lamb's book of life, a statement that I did not reject his gift, but accepted it. And He'll welcome me home. All because of a gift He offered just for me, and YOU too! All humankind are offered this gift, and those who reject Him, will forever be cast into a place of eternal fire and darkness. Amen I answered the call and acknowledged I am a sinner and nothing but the blood of Jesus could save me. No mohammad, no buddha, no new age false prophets, none but Jesus. Easter renews the depth of loneliness one man went through to give me the gift of life. It's a gift free for the asking. Enjoy Easter and Passover, and give a moment to ponder WHY we celebrate. It's got nothing to do with a bunny rabbit. More tomorrow, Lord willing, Love Lori OxXo

April 11-Progress!

Good Morning! Today I have good news that my Creatinine has dropped one more point, to 1.2 milligrams (mg) per deciliter (dl). This is indeed what we and YOU have been praying for. Everyone here will breathe better when it returns to 0.9 milligrams (mg) per deciliter (dl), which is an acceptable normal value for me and that is the number I came in with. So my go home number is when I get to 0.9 milligrams (mg) per deciliter (dl), as long as my lungs are doing OK too. There were plans last week for me to be discharged tomorrow, but that was before my kidneys were squeezed too hard. So now it's one day at time. No worries mate, as I don't want to be turfed home before I am the best I can be. Since IV access is a nightmare for me, going home and hoping the local lab can get blood from me is not an option. Sure, with a little baby butterfly needle you can get half a tube of blood from me, but they need much more than that to run my labs, so best get me tuned up here at Duke and send me home ready. Once before when I was sick at home, Brian took me to the ER at Norfolk General and I had a note in my wallet that said don't even bother torturing Lori for blood work, go right for her femoral vein and it will be a sure thing. Amen I had that note from Dr. Randy Garnett as I've used it as my trump card twice now.

Which brings me to another thought: The lung bug they saw growing is treatable with some hard hitting medicines that require weekly blood labs to check your liver and kidney function. Since getting blood from me is so very difficult (due to having 18 Medi-Ports, 16 PICC lines and so many central lines I've lost count, my chest and arms are a battlefield of scars). So no veins means we go for a femoral approach each time. Well if I were to go on these meds at home, I'd need weekly labs. Like getting blood from a turnip.....ain't happening. This factor played in Dr. Kussin's thoughts when he was considering whether to treat me for this bug or not. I asked them to send another sputum to confirm their finding of a new bug, as one report alone is not reliable and suspect at best, and so I wanted confirmation. We sent another sputum (or as I call it "lung snot") off to the lab on Tuesday but as is typical with CF patients, it takes FOREVER to grow out the bugs in the lab dish. We are still waiting. Until it is confirmed a third time, I will resist any treatment for it. Some times the treatment is worse than the cure. Make sure after 3 micro tests I do (or do NOT) have this bug, and then go from there. Since treating it can hurt my kidneys, it's not taken lightly in my case. This is practicing good medicine. Dr. Kussin agrees. Let's see if the bug really, really is there in my lungs before I risk kidney damage treating something that might be a lab mistake.

It's Easter weekend. I wish I were a kid back home in Toronto now. I'd have gone to a Good Friday church service yesterday, and dad would have bought mother an Easter Lily, as always. Mom would make us kids an Easter basket with all kinds of goodies in it, and hot cross buns would be eaten for breakfast. Then back to church on Sunday in our Easter finest. We usually got new shoes and dresses for Easter. Family came for a wonderful, after church dinner which mom made every week, and was awesome and mouth watering. She always but the rump roast on before we left for church, and when we came home, the house was suffused with the smell of an amazing roast in the oven and of all the veggies, potatoes and fixings broiling. Oh I can smell it now.....the wonderful smells of a Sunday dinner, cooking in the oven, the way only mother could make it. Amen!

Brian will come Monday and stay with me until Wednesday. He has a room at the local hotel and actually, we have a nice event planned. Our friends from Idaho, Laird and his wife Wynne, are coming to Duke for his annual lung transplant check up. This will be Laird's 9th year with his set of donated lungs. He was very sick and needed new lungs as desperately as all those who wait do. Amen for a courageous donor family who gave the greatest gift in their darkest hours. Laird is 58, he skis downhill, chops wood and is a real outdoorsy mountain man in rural Idaho. We met about 6+ years ago through a mutual transplant friend and have stayed in touch ever since. So when Laird and Wynne fly in on Tuesday, they will be staying at the same hotel as Brian. Brian then will meet and treat them to dinner. Brian asked if I could go to dinner too, and like, "no way" will I be given a pass to go. So Brian suggested that if we put a pumpkin head in the bed and some tree branches as limbs, we might be able to escape for a few hours during shift change. So that's my life and an update in the last 24 hours. Please keep your prayers coming. More later, Love Lori oXxO

April 12---Happy Resurrection Day!

The docs rounded just now after 1PM as it's Easter Sunday and they allow themselves time to start later on Sunday mornings. My kidney function is still holding steady at 1.2 for my Creatinine. This is the same result as yesterday, and as long as it does not go UP, we are happy. My wbc (white blood cells) which indicate infection, are up. They are at 12, when I came in at 7, so 12 is a signal that *something* is going on. Now we wait and watch....

When asked today if I feel better, I said I've missed the corner that signals I'm making a turn around. I don;t feel as good as I should be for having been here 2 weeks already, so clearly, we have to tweak some meds to get me feeling better. The doc said my chest was full of wheezing, which was funny to me as I did not detect any wheezing. I am so used to it that my lungs sounds to me are normal, but to the docs, they are disturbing. Lung sounds tell you much of what is going on, so they learn to listen carefully and how to interpret them too.

The nurses had an Easter Buffet today and they made me a take out plate full of such wonderful goodies! There was: green beans, fried rice, ham, matzo ball soup, fried chicken, shells and peas, and other nice things to gobble down on my Easter plate. Thank You to the day nurses who let me be a part of their Easter here on the floor. One of my favorite nurses is a man named Will. He made the Matzo ball soup and it was good for what ails you! Will keeps his eye on me even when he is not assigned to me for his shift.

OK......it's nap time for me. I am tired. I've been sitting in the bed side chair for over 5 hours now, so time to crawl into bed for nap time. Brian comes tomorrow! Amen for today, Easter, and what it means to me and the faithful believers. Shalom. Love Lori

April 13---One Step Back....The medical team came in about 9:30 this morning and they were not all smiles. Dr. Hargett has been covering for all the CF patients for the last 2 weeks while Dr. Kussin was working elsewhere. They talk back and forth about me so Dr. Kussin is kept in the "Lori loop".  So today my kidneys are happy again, as the creatinine has dropped one more point to 1.1, which is what I asked for with your prayers. At least is it slowly falling and NOT rising. This means we are moving in the right direction. My wbc however, rose to 15.5 today, meaning somewhere, my body is fighting an infection. It could be almost anywhere, but I'm not feeling as sick as when I came in and I can't point to my lungs as the problem. My femoral line (in my groin) is leaking, so they want to investigate that. They offered a treatment plan that I am not sure about. In its entirety, they  would like to start hard hitting drugs for the once seen fungus in my lungs. It also means weekly blood tests. I would prefer NOT to treat it now until such time as I have THREE positive lung cultures demonstrating it is in fact, there. So far we have one possibly positive, and another one cooking in the lab. But since the treatment is very harsh, I'm going to hold off and gather evidence. They would like to perhaps remove my femoral IV line and try to replace it. This is something I will agree too. They want to look at my upper chest and arms to see if I have grown back new veins for a PICC line. Indeed, I have had 22 PICC lines in my arms and chest and after using them all up and damaging the surrounding tissue, we could no longer get any blood back so we stopped torturing me to try for more PICC lines. Ultrasound 3 years ago showed no veins were usable.. While I have grown new collateral veins in my upper chest, I am doubtful they can be used for a PICC line, yet I have to let them come and look. Oh I can feel the pain now. It is so sore and hurtful trying to thread the long PICC line into my arm vessels. They read a narrow area and then block off completely. so I know from whenst I speak. Yet, I have to let them  look, right?

Brian will come here this afternoon and tell me everything is all right. He'll listen to them and give me his 2 cents worth of opinion. The charge nurse rounded with the team and when they had all left, she asked ..."Is there anything you want?" I said "Nothing". She said "Prayer, right?" I nodded yes. So even she knows this is a time for prayer. The doc said I do NOT have much reserve to fight the good fight if I do develop full blown sepsis. Been there, done it, almost died in Florida, I told him I've always been told since I am fat for a CFer, I DO have reserve. He said I do have fat left for extra calories, but generally my body is in end stage and a major episode of sepsis will kill me, and they like me too much to see me die now.

That was my Monday morning. I'll let them do what needs to happen to get me better. They will culture every opening and hole. Gotta find why my white blood cell (wbc) count is creeping up. Not good. However, I am not panicked. I am here right where the Lord wants me to be. Now I wait. Please continue to lift Brian and I, plus the medical and nursing team treating me, in your prayers. They want me to walk out of here too! More later....nap time. Love Lori  x00Xx

Late Monday Night Entry....After supper time, the PICC line specialist came in to see me. His job is to place long catheter lines in your arm or other place to get IV fluids and meds flowing. Using ultrasound, it was his opinion that I had one good vein in both arms, from my elbow to my shoulder. It was going to be his job to put one of these PICC (Peripherally Inserted Central Catheter) into my arm. I was not all that gung ho to have it done. It HURTS and I've had them done many times before, and the outcome is that I have used all the veins up, which is why we don't go there anymore. But this guy says he can get it. If I don't let him try, I'm being a weenie and the team looking after me will be upset that I didn't do as they wanted. They will label me as a "difficult" patient and "not compliant" with medical advice. It's a lose lose situation with me. I don't have any veins good enough to support a PICC line. I know my body. Believe me. Trust me. But Noooooooo, they know best and are gong to make me have it sone. Period. So after some talking, I basically have to agree to have the PICC inserted. But now it's too close to 6PM, and his shift is changing, so he hands me off to another PICC specialist who comes at 6:30 PM to see if she can do it. Meanwhile, Brian arrives from home. It was a 4 hour drive and he is here. Amen! I quickly give him the details and he is here for my moral support. The technician uses ultrasound too, but in her opinion, there is just one tiny, small, torturous vein in the left elbow worth going after. She says it is too small to draw blood for labs. I am upset at this, as I have frequent blood draws for labs and I get these off my line, meaning no poking me. Hmmmmm. She then decides to call the doc and tell them she can't do what they'd like. I am happy with this since I did not want to be beaten and bruised tonight for a PICC line. Nope. It hurts and I am not happy. However I also know the team will be upset with me in the morning when they round. I hug Brian tightly as he leaves for the hotel and tell him I love him. He calls me later about 10PM to say he loves me too, and goodnight.

April 14---Not a Happy Camper

They were not happy on rounds. today. The team was sure I had sabotaged the PICC line and had not been told what had happened the night before. I ask them to go read the notes in my chart and NOT to be upset with me. No go. They wanted a line in...NOW. So PICC line specialist #3 comes to see me. She too, ultrasounds my arms, and finds 1 tiny, itsy bitsy vein in the elbow crook and she has to have a go at it. The pressure is on. She must get the line in. Brian holds my right hand under the sterile, surgical drapes and she tries the get the line in. It takes 40 minutes (should take 16) but the problem of scar tissue makes it difficult. After much crying and whimpering from me, she is satisfied. BINGO. It's in. The PICC line is happy. I am whimpering still. I can't bring my self to Thank her, not after the pain it took to torture me. She leaves. Later today, someone will come to remove the femoral line.

About 3 PM, they come to take an x-ray to make sure the PICC line is in the right place. They have to do this before they start the IV meds infusing because infusing it when it's in the wrong place can have bad consequences. The doc comes to see me in 15 minutes to tell me the x-ray does not show the PICC line. They shoot another chest x-ray.. In 30 minutes, she returns again. This time, we have a problem. This second x-ray also, does NOT show the IV catheter in my arm. They are puzzled. The Resident doc calls the attending doc, who looks at the x-ray and then calls the Radiologist. Nothing. None of them can "see" the 8 inch long catheter in my arm. Right patient? Yes. Right x-ray? Yes. Catheter? No catheter. O dear....what to do? They decide to pull the line out. The very line I cried and whimpered over earlier today? The one that hurt so badly as they tried to bull doze through mounds of scar tissue? Yes, Lori.  I am flabbergasted. I want, a second opinion. I get a second opinion. Sorry we had to beat you up today, but darn it all, we can't find the end of the catheter on the x-ray, so it's not safe to begin the IV antibiotics. I am quizzical. But mostly, I want it out ASAP. Now, get it out! So out it comes. Whew....I TOLD YOU it would not work, not NO...ya'll made me go through PAIN to show me YOU were calling the shots. It Sucks to be me today.

At supper time, the line was pulled from my left arm. Gone. No more. Amen. It was decided that we can deal with my leaking femoral line and as long as the site does not get red, angry and infected, we would keep using it. I was also told something new.....my latest chest x-ray showed a new finding. It's either a pneumonia or infection in my right lower lung. I did not have it on my admission x-ray, but on day 11 when I was not getting better, another x-ray showed this new surprise. Why not tell me then?? Well they did not know if it was significant. Now that I have an increased white blood count (wbc), they are looking for a source of infection, and this might be it. Keep me in your prayers please. My creatinine, which is a snapshot of your kidney function, is slowly going down, just as y'all prayed for it to do so. Amen! It is now 1.1 today, and they are happy it is dropping and NOT going up. My wbc count is a snapshot of infection, and mine dropped from yesterday's number, so again, an answer to prayer, YOUR Prayers!

Late Tuesday Night Entry....

I received this email from my friend and I wanted to share it with you.

So, the PICC line was an ick line for you this week, eh? I'm so sorry that what was already

known had to be proven and at your discomfort. NOW the doctors can see that you are

compliant--you agreed to something you felt was pointless. but you agreed! No sabotage.

No refusal. Just well-reasoned "I don't want to but I'll give it to you" insistent.

Love you and hope you're enjoying your special Brian time. Love............

 

April 15---Hot Dogs!

Dr. Hargett really is a nice, socialble caregiver with a pleasant bedside manner. I'd recommend him if you had a lung disease and need a good listener and team player for your care here in Durham, NC. Today is his last day beating me...oops...I meant treating me, and now he moves on. Dr. Kussin steps in tomorrow for the next 2 weeks. Oh goody...Dr. Peter is back. In more, positive news, we discussed my treatment plan and it is desired for me to stay for one more week. It was discussed that although I've been on IV antibiotics for 11 days, they were not the right combination to work against my CF bugs. So as smart as my CF bugs are, we have to be smarter and hit them longer and harder. I told them on rounds that not only have I not had a hit from these meds, but the light at the end of the tunnel... What tunnel?? Can't even see that. Another week to get the miximum hit I can get from these antibiotics. That is wonderful news.

Brian left this morning after 8 AM for the 4 hour drive back to Virginia. He'll come back this weekend, where we will celebrate our 11th Wedding Anniversary on Saturday, plus Brian's 45th Birthday on Sunday. Then home for me on next week, Lord willing. What a game plan! My nurse today is Ely, (pronounced Elle E) and she will bake a cake for Brian's birthday with the buttercream icing he likes! Amen for Ely and her baking skills!

I hope to have some visitors today: Laird & Wynne, from Idaho. 

Thanks also to YOU, my loyal readers who log on to read my updates.

YOU are the special prayer partners I rely on, and when I miss a few days or a week, YOU also are the ones who fret, fearing the worse,

It's all in God's hands!

Knock, Knock....At 4:15PM, there is a knock at my door. My nurse is Ely, who tells me, "You have visitors", and in walk my friend Laird & Wynne from Idaho. They are here at Duke for Laird's 9th Anniversary since his double lung transplant and that means clinic today and a bronchoscopy tomorrow. They fly in once a year for this, and more frequently as need arises. Last night, Brian joined the 2 of them and they went out to dinner. They all had a wonderful time. This was the second year they have met up for this Duke appointment. Last year, I went with them to dinner. Not this time. Tomorrow, it's back to transplant clinic for Laird, with Wynne right there with him. Here is a photo of them.

Last minute posting...today here at Duke is a fundraiser for CF.

One of my nurses, Will, coordinates a hot dog lunch here and just now, Ely my nurse brought me a hot dog lunch from the fund raiser. I'll let you know how much they raise from this event later today. This Saturday, the 18th, is the Duke walk for CF. It's here on the campus, and although they want my $$ to go to CF research, I am not allowed to go and walk with the crowd and have been asked not to attend. Why? My CF lung bugs makes everybody very antzy.

Here are the hot dog photos for CF. Enjoy! Thanks to Will, RN and the team that volunteers to make this fundraiser possible! One day, they will cure this disease, and CF will then stand for..."Cure Found!"

   

$1,720 in

Hot Dog sales

      raised for the

Cystic Fibrosis

Foundation

 

 

Thank you to all the VOLUNTEERS who gave their time to make this happen, to Will Millard, RN for pulling for CF everyday, and for all the staff who planned and stood behind the tables serving and selling.

This adult with CF, Thanks You! Love Lori

April 16---One Week to Go

Isaiah 54:10
"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the LORD, who has compassion on you.

Contributed by Michelle Trevino to Lori via email. Thanks Michelle for your encouragement and PRAYERS!

Early this morning, the troops came in. Dr. Kussin led the team and he was delighted and wide awake when he rounded on me. He picked up on my hearing loss and rightly attributed it to aminoglycoside ototoxicity, meaning long term use of these antibiotics that work against my CF bugs, are notoriously known to cause both hearing loss and kidney damage. Many of my friends with CF have hearing loss. It's either get the meds needed to breathe, or not, and you retain your hearing. It's a Catch 22 situation, as you need the meds to live, but the cost is that you pay for it with your hearing, or kidneys.

So he lectured the troops about this and said it is a known side effect. Did I want to be worked up by ENT for hearing aides? "No thank you", I replied, Brian knows I am hard of hearing, and it's not a biggie with him. Me neither. My femoral line is still doing its job, despite leaking at the site. I had to "drop my Jockeys" today to show them the site where the IV line is sutured into my groin. It looks good, with no sign of compromise. Yeah!! So perhaps my focal site is after all, the pneumonia in my right lower lobe. Whatever...I am getting better, so keep this up and I'll be home next week. Another answer to prayer. Many of you reached out to Brian and I and prayed for us. Most of you pray for me everyday, and I am thankful you do this. Even when I am in the hospital for long stretches of time, I need my faith to sustain me. Reaching out to others to help me shoulder the burden gets the word out that I am asking for help. Thank You, Friends!

It was alluded to being discharged next Thursday morning, after my 9 AM bag of Vancomycin infuses. It takes 90 minutes to go in, then they will pull my line out and in half an hour, I'll be able to walk out of Duke and head home. It's always a happy day to walk out of here, and not go out in a body bag.

Click to send Lori a Duke eCard Room 7811

I enjoy receiving your emails and cards. My friend Ruby always sends me cards in the mail and email every day. Donna Price loves to use the Duke patient email program and sends me email that is printed out and delivered to my room by a volunteer. Just click on the link above and fill in the blanks. The email will be hand delivered to my room by a happy volunteer and I get something to read and laugh over, since the emails I get always are things to lift my spirit. Keep them coming, and being FREE, its a cheap thing to send my way.

It's still early in my day here. I'll write more if something interesting happens today.

Go about your day and have a chat with God.

He's got all day to listen to you, and He is available every second of every day, just for YOU! (and me too). 

Love Lori  X0x0

April 17--Answered Prayer

I'm feeling better! Amen for those who have lifted me up in Prayer. The team rounded on me early this morning and I was glad I just got into clean pjs and a polo shirt, when they knocked. They too, were pleased I am making progress. My wbc was up yesterday to 12.5, but I am now on aggressive IV and oral antibiotics so I am getting the best treatment available. My Creatinine, which measures kidney function, is also NOT climbing, and holding steady at 1.1 Another answer to prayer. We discussed the possibility of going home next Thursday, April 23rd. I'll be gung ho and ready as long as I continue to progress. My only possible issue could be my femoral line. It is way past it's life but it is still working. Being where it is, is it so wide open to infection, and my issue is leakage. My line leaks every time we infuse or flush the IV line. The solution runs down my leg. Why? Perhaps the insertion site (the hole) is larger, from movement, so that fluid leaks out. We did worry but the site of the line is clean, not at all inflamed, and I have no fever at all. So the wisdom that prevails is to keep the femoral line infusing and watch for infection. Then on Thursday, hang my last bag of Vancomycin, run it over 90 minutes, then pull my femoral line out. In 30 minutes, I'm out the door, going home to my cats, Sugar Gliders, and my husband. It works for me. Then 2 days later, Hi Ho! Hi Ho! It's off to work I go. I am excited about returning to work and know if I get home, I'll be ready and able to take call for medical examiner cases.

Brian comes tomorrow for the weekend. It's our 11 Anniversary. Amen for 11 years with my soul mate.

I'll close here and maybe log on layer with more news. Time for breakfast. Love Lori 00Xx

April 18--11 Years Ago Today....

....Brian and I were married. At the University of Toronto, in Knox College. It was a sunny Saturday and both are parents were there and excited. Where has the time flown bye? How could we have got to 11 years already?? Wasn't it just last year we were married?? It has been such a good marriage that it is not marked by violence, bad memories or sadness. Which is why I am surprised it's been 11 of the best years of my life! Amen. And all because of the internet, which is how we met. Brian cyber dated me for months before we finally met, and I was taken off my feet by this Southern gentleman. I swore I'd never marry, never wanting to share CF with someone I would soon die on. My parents even sat him down and told him to not go forward in marriage if he was going to break my heart and leave due to the burdens of a sick wife. Undaunted, Brian insisted he was there forever. God has really blessed our marriage and has taught us timely lessons about committing to God in our lives and letting Him worry over the little things.

Brian will be here today and spend the weekend with me in my hospital room. We have arranged a pull up sleeping chair for his sleeping quarters tonight rather than going to a local hotel. I think we'll order some Chinese food for dinner, and just enjoy each others company tonight as my IV drips and the ventilator hums. He knew he was signing on for this life when he said "I Do!", and I am the happiest person alive to have married my soul mate.

The weekend doctors rounded at 8:30 AM and we mostly talked about how Dr. Yu loves to pay with the Wii his kids have. He likes the soccer game a lot and is good at tennis. It's the same old same old stuff with me here. Getting the IV meds and waiting to feel much better. He said my sputum is still growing and he noted I am still coughing up chunks of yellow lung snot. This might be my new baseline. It might not get much better than this. They did tell me my reserve is now much lower than at other times, meaning they have little room to work with options on me as the slightest provocation can throw me into the drain and I might not be able to climb out of it. But this time, right now, I am feeling better, Amen!

My motivating stimulus is work. I am signed up to work next Sat-Sun &Mon and I want to go to do my part and step up to the plate and work. I wish I had a longer time from being discharged and going to work, like at least 2 weeks, but that is not my situation now. Home Thursday, work begins Saturday @ 0800h. So now my focus is being ready to be ready. Perhaps I won't have a case to go to. That's happened before when I've taken call, and that would be ideal now, but not what I want. I'll be ready to work and will respond to calls to go work any cases that call for the Medical Examiner to be on scene and present. In fact, I'll probably thrive under the tight turn around just to prove I'm OK and can do it! It's like being caught as a fish and going from the lake to the frying pan in no time. Bring it on!

I asked my nurse a few days ago to bake me a cake for Brian's birthday tomorrow and Ely has done it. It is heart shaped, vanilla cake, butter cream icing, and she will bring it here tomorrow. Ely also made matching cupcakes too, for the staff to enjoy. Thank You Ely! Tomorrow I'll post photos for y'all to see. Brian turns 45 tomorrow and is celebrating it here in my hospital room. What a real trooper to still be so in love with me. OK...more later, or maybe tomorrow. Depends on what happens in my isolation room at Duke. Love from Lori.  OxXXo

April 19--Happy Birthday...

Good Sabbath. Brian spent the night in my room, curled up in the big, uncomfortable chair. Yet he did sleep. I dislike that big chair as it does not open flat enough to allow a good stretch out to sleep. But then, he was so tired, he slept well. When I got out of my bed at 7 AM for vital signs, I swapped with him and let him take over my big hospital bed. Today is his birthday and he spent it in the hospital here, with me by his side. My nurse, Ely, took my order to bake a heart shaped cake with real butter cream, for us to share and for cupcakes for the nurses to enjoy. Thanks ELY for doing this. I insisted she let me pay her, but no....she would not take a penny. I tried. I had many comments from staff thanking me for the cake, but I deferred all to Ely, giving her the praise for a cake and cupcakes, done well!

We did nothing all day. Can't leave my room to wander, so we talked and cuddled until time to head home. Our neighbor at home, Ruby & Rudy, sent along a goodie bag of gifts! While I was not able to have a gift for Brian, I did get him a card          (Thanks Ely!) and so our friends sent along some goodies. Brian opened his many birthday cards and he was charmed to get a remote controlled model car which I then ran around the halls last night. I opened my door and with my mask on, let the car run the hallway. It was cute, with its headlights on, revving up the halls. The newly waxed floor caused major spin outs, but I was able to get the car moving again. It did provide me fun time, so I did not allow Brian to take it home with him, preferring instead to let me play with it longer, here in my room. Thanks for the perfect gift, Ruby & Rudy.

All too short, the time came when Brian had to pack up and head home. It was a magical weekend with him just because it was so simple. No big plans to do anything, but just special time to be together, doing nothing. It brought home just another reason why I love him. He could have chosen to celebrate elsewhere, yet he gave his weekend to me. I pray for another 11 years of marriage to the guy I love, Brian.

April 20---Home on Thursday...

Dr. Kussin and his team of students just rounded on me and the good news is that this Thursday, I'm going home! Amen for small blessings! While the Resident was alarmed at the amount of wheezing she heard on my chest exam, this is actually good news as it means I am in the home stretch. More wheezing in me means more air moving, which is wonderful compared to how silent it is when I come in. So when I can make these wheezes, I am heading home. Thursday I'll get my 7AM bag of Vancomycin, then chase it with some Fortaz, then the wonderful Kim Osbourne, RN, will come and pull my femoral line. Then home.

First thing Dr. Kussin asked when he came in this morning was...."Did you do your "Wii-hab" this weekend? Get it? Such a great pun and good use of words. Yes, I did "Wii-hab" with the donated Wii from the Price family. I told the group in my room that Brian and I intended to donate a Wii to this unit and Dr. Kussin was thankful of this offer. He also asked me to bring my own Wii each time I come in. Since I can not share my Wii with others with CF on this floor, I'll have to bring my own set up each time I come in. OK...this can be done. I'll buy a Pelican carrying case for the Wii unit and the Wii Fit Board, plus the extra cords and stuff. He said what comes in to my room for my use, has to be scrubbed down and disinfected before another patient can use it, so his solution is for me to bring my own Wii each time. This is how other CF units handle sharing so they minimize cross infection. Again, huge Thanks to Donna & Jim Price for gifting Brian & I with this Wii package!! When I get home, I'll keep my eye on Wii games and accessories, now that I have my own unit, I'll want to try other games on it too. Awesome gift!

So more of the same of sitting here to get the IV meds I need. Amen I have turned the corner and can see the light at the end of the tunnel. I will be discharged and will go home. I should not have any residual kidney trouble once I stop the IV meds. Just next time, we'll have to watch closely my kidney function and adjust the dosing as necessary. This was a good tune up, as I was slammed with new issues and now we are more aware that my CF management is a bit trickier. I still believe I am in the best place to be treated. Even when my fuse was short and I was not being a nice patient, I am grateful Duke will treat me. Plus Nurse Ely makes such good cakes and cupcakes, I'll have to come back!!  Hugs from Lori  XoOx

Mid afternoon on Monday

A knock at the door brings a volunteer who delivers me a stack of printed emails. The weekend printer was very busy in the volunteer office, printing your emails to me, which I just received. THANK YOU to everyone who took time to email me. Many of you emailed me multiple times, some even mailed many times a day as, they felt led. Amen for your witness to me. As I asked for your prayers, I must be open wide and willing to receive them. The sheer volume of paper showed me you cared. You stepped up to the plate and prayed. A few times, I wondered why the response was not as rich as I'd hoped for. I knew y'all promised you'd pray, but I didn't "feel" it. Well today, you knocked me over. Seems many of you went to the Duke email link and typed out a message to encourage me. All those messages accumulated until today, when they were handed to me. It seems a few of you were woke at 3AM to pray. Amen for that. You see, God isn't necessarily a 9 to 5 guy, and aren't you glad for that? What about when your accident or crisis comes at 8PM? Who is on guard for you then? Well God is. 24 hours a day, He wants to spend some time listening to you talk. So talk.

I heard from friends I met at Duke Pulmonary Rehab with years ago. I heard from people at my church who know about me and read my web page. I heard from local friends offering to bring meals to the house, and I heard from buddies who have always been there at my side. Let me tell you how grateful I am to have y'all as friends. With no family here in the US, I have come to treasure my sisters even more, since I see them just occasionally. It's the "everyday" people , like you, who I have welcomed as friends. Perhaps you are my travel agent, my seamstress or my hair stylist, and we have social relationships that don't run deep, but when I asked for prayer, you came through for us. Thank you for asking how I am doing. Thank you for Praying. Thank you for listening. Thank you for touching my heart.

I used to have a deep sorrow that when I died, nobody would be at my funeral.

Oh sure, my family will show up, but I felt I had not left a mark of friendship so that friends would come, if they could.

How that has changed.

I worried that Brian would stand alone at my casket, not knowing how to go on.

How that has changed.

I used to think I would not be missed.

How that has changed.

The Lord has enriched my life by faith, and I have tried to share my faith with y'all.

At times I even ask for a second heaping of faith, when I am at my weakest.

That's when my friends rally about me and show me how loved I am.

Thank You

April 21---In the Home Stretch

The early morning knock on the door was the CF team rounding on me. Dr. Kussin looked handsome in his khaki docker pants and polo top, covered up by the necessary yellow isolation gown. Everyone had their own listen to my chest, commented on the sounds they heard and asked again, if I am on queue to leave Thursday. "You Betcha!", I replied. My Vanco med will infuse at 3AM for 90 minutes, the chase that down with Fortaz over 30 minutes, then it's wait for my femoral line to be pulled out, make sure I clot off, then get my stuff together and head home. Amen for this blessing of wellness. Some people come in and leave dead. This time, it was not my turn.

Dr. Kussin inquired as to how my weekend went with Brian here. I told him it was a wonderful weekend spent with my husband doing nothing. The meaning in it was that we were together. Our marriage has brought a lot of fun into our lives, and CF has always been a player. We are constant companions, CF and us, and I am thankful I have a Godly husband who is equipped to see through the CF and be there for me.

I asked the team today if I am going to be treated for the 2 positive Aspergillis cultures they teased from my lungs and the reply was not now, unless it becomes a pathogenic bug doing damage down the road. This was what I'd hoped to hear since I am reticent to begin treatment for this bug until I am majorly sick from it. First off, I was bummed when they said they found it in my first sputum culture, and I asked for another to be sent. That went off too. Then on day 11, we send off sputum culture #3. It is still growing in the lab, so we do not have a final report on it. Treating a CF person for this bugs is tricky. Often the meds used make you sick. Your liver takes a hard hit, and weekly blood tests are needed to monitor the drug levels. That means having veins available for these tests. Do you see my problem?? Absent veins, At best, very difficult ones to get for lab work. You can't draw off a central line for weekly lab draws while at home. You rely on a vein in your arms or hand for blood tests, but mine are scarred up and used up. Well in my case only, I agree NOT to do anything for this bug now. No treatment until such time as I feel this bug is making me sick. There may be a point down the road where we will start treatment, but we are not there today. Another answer to prayer. I was hesitant to jump on anti-fungal meds for this new bug since sometimes the cure is worse than the disease. So in the end, I am happy to "first do no harm". Wait and watch.

One month from today, Brian and I have a cruise scheduled. It's a while away, but I am prayerful I'll still be chipper from this tune up to go and have a wonderful time. More precious time spent with my husband. ...I'll close here and thank you for your prayers and emails. Drop in on me and check my progress, and try to do something nice to a another person today. Big Hugs, Love Lori. OxxXo

Knock Knock @ 6:45PM

Who's there??  

Tricia, Nathan and Gwyneth!!!  

Tricia was admitted today because of pneumonia in her transplanted lungs.

She looked really good!!

She was in her pajamas walking with a big blanket around her for warmth.

Nathan was playing with Gwyneth in the stroller.

They asked if I was feeling better and I said "YES, and I'll go home in 2 days".

Did I want anything from the cafeteria?? "No thanks".

We chatted from about 20 feet between us and it was so nice to see Tricia looking good.

So that's my news. Wahoo!!!

Here is their web site

http://www.65roses4pattysue.com

April 22...Packing Up

The team came to see me early and it was a full house. Seems there are a few more CF folks here on the floor now. As I mentioned above, Tricia is now next door. She came in yesterday evening and she looks good, despite pneumonia on x-rays. Nathan was hugging Gwyneth and and she looked so good too! A walking miracle, this family is. Read all about their faith and the blessings on their web page: http://www.65roses4pattysue.com/

I also saw another CFer walking laps. His name is Jimmy. We always seem to be admitted around the same time. My last 3 admissions we were in synch and both here. When I was able to walk the halls and leave my room, we would see each other then in passing and chat outside the kitchen. Now he walks and I'm on lock down. But tomorrow, I WALK OUT OF HERE. Amen for ny recovery and for the team I had in place to make that happen. The nursing staff figures more prominently with me as they do all the scut work but get little praise. It's the physicians who take the bows, while the nurses are behind then in the wings. But in my little bubble, it's the nurses who should be heaped with praise. Just so you understand I am not blinded to who really pulls the load here...Nurses Rule!

I am up in the chair most always from early morning rounds until about 3PM, when I scoot back into bed for nap time. I was on the vent last night but came off it early, preferring to use the trach collar instead. I also fessed up to Dr. Kussin that I am not using the vent 7 nights per week as originally prescribed. Originally, I was gung ho to use it every night, thinking it would buy me time. I did that for a year, then began to give myself a "holiday" every 7th night. So today I fessed up and he said it was OK. It is not meant to be a torture tool, and having time off the ventilator is important too. He said it is more for keeping my airways from collapsing and less for end stage lung disease. When I was trached, my airways took a hit and have been very fragile and collapse easily without a trach tube to stent, or brace my trachea open. Whew! He didn't have a hissy fit or scold me. I can miss a day or so here and there, as long as I find I can function on those days when I have not slept on the vent.

I hope I have a good sleep tonight. My excitement might keep me from sleeping. You know, like when it's a vacation and you are ready to go the night before. Well I am so ready to go home and pick up the pieces. To snuggle with my cats will be fun. I'll close here now and take the rest of the day easy, praying tomorrow dawns a new day and I'll be home. Amen!  Love Lori OxOxxo

April 26...Home

Home. I am glad to be home. Alas, I have tons of things waiting for me to take care of. I did not update the last few days as I was exhausted and basically, I laid low. Did as little as possible to regain some strength. Discharge was so easy. Dr. Kussin and the team rounded, we said Shalom to each other, then I did paperwork to get officially discharged, had my triple lumen femoral line pulled from my crotch, and in half an hour, was on my way home. 4 hours later, the cats greeted me at the front door. All 5 of them. They wondered where I went. It just took a few sentences of talking to tham and they knew "Mommy" was home. It must confuse the heck out of them when I just up and go for a few weeks every other month. The 3 Sugar Gliders lost no time finding me in the bed late at night. All you need to do is turn off all the lights, crawl onto the bed, and plop! 1 or 2 if then attach to you like a magnet. They PLOP onto you and stick, like velcro, and then work their bodies all over yours. They LOVE my trach speaking valve, which I wear around my neck on a string, and it's always the first thing they go after. They try to bite the string off and will spend 10 minutes trying to chomp on the string to get it loose. When they are successful, I wake up without a speaking valve. Gone. On the floor or into their cage. Lost. Darn it! There goes another Passey Muir valve.....

Here is photo of the very line they took out of my groin. The part that goes into me is 8.25 inches long. It is sewn into my groin so I can have IV access of fluids and antibiotics. I rescued this one before it was trashed. The 3 ports or hubs, allow for blood draws on the white one, and IV meds in the other 2. When one port clots off, as it frequently does, the other 2 are there are useful back ups. This very specimen you see here, was the 14th that Duke put in me. Awesome eh? Fourteen times, they have been successful getting this into my right femoral vein. Recall that when we first began this, we were doubtful how long the vein would last and I cried when I was told that when the time comes when we can no longer get it, then my options suck! But isn't God awesome??!! For 14 of those times, I cringed when they tried to poke me, thinking about the "what ifs...." But each time, the vascular radiologist HAS been able to find the scarred and beaten up vein and get it in so it will work. It's part skill on their part, but it's a God thing that we are 14 for 14! What a triumph this has been in allowing me to live longer. Because when you can't get the meds in, you can't get well.

So here I am at home....not feeling 100% yet. Why? Nausea and diarrhea. I never had it in the hospital, but now I do. Hmm...Take more Immodium and let it work. So I am basically being vegetative as I recover. In a few days, this too, shall pass and I'll be feeling pretty much back to being me.

Hugs and Thanks to everyone who emailed, wrote, mailed, phoned and PRAYED to encourage me. I heard from people long ago silent, and even new people too! I heard from people who were in my lung transplant  rehab class at the Duke Center for Living! Many of you who knew me, reached out to say Hi and to update me. It was wonderful to hear YOUR stories too! How the miracle of transplant has blessed you too. And all of you said it was not an easy recovery either...You don't wake up the next day after lung transplant and feel as good as ever. No way... Y'all told me horror stories of the long road back during the first year, and how you had seizures, illness and anaphylaxis to new drugs. It was a hard first year...but AMEN, the Lord gave you this second chance to reach out to others. You also told me it was all worth it. And you all told me how FAITH and GOD played a huge role in the person you are today. What a joy that y'all emailed me and we chatted. New friends have come around again. Keep me in the loop, OK???

Brian is so happy I am home. His mother is too. She calls everyday to check in on me. My neighbor Ruby sent over fresh baked chocolate chip cookies to welcome me home. Our landscaper, Eddie Gosman Sr. & Jr, sent over a crock pot with a huge pot roast in it, as well as his Aunt Jo Ann's Chicken dinner with mashed potatoes and deli meats. Oh what wonderful Christian friends we have. Thank you all for caring about Brian and I. I'll update here again in a few days as I get back into life and get strength back. I'm on my way to wellness. Duke did their part. Now my body needs to catch up. With Love, Lori xOx

18th of May and Doing Nicely

"Where O where have you been?", you ask?

I've been very busy, enjoying life!

Yup....my fault entirely for scaring some of you into thinking I was dead.

I know who you are because I got your email(s).

Nope...not this time.

I have simply been doing what "normal" people do and have been so dogged tired at the end of the day that I slide into bed and fall into dreamy sleep time without having logged in to say "I'm alive!".

I've been enjoying being back at work taking cases and while I have sometimes had quiet weekends on call, my office has been slammed with cases in other jurisdictions. Chesapeake is the quiet city out of the bunch here in what is called Hampton Roads, or Tidewater. Why "Tidewater?"

We are a tidal zone and if you dig but 6 feet, you are at sea level and at the "tide water" zone.

This is my third long weekend taking call for the Medical Examiner and I love it!

I work 72 hours on call from Saturday 8AM until Tuesday 8AM, rest up the week days, then return to take call again from Sat-Tues.

It's my dream job and it's awesome because I am doing what I love and being paid too!

Sure, I just have to wait for someone to die, but hey, that's not my call when they die.

It is appointed unto every man to die.........

It has rained for about a week non-stop here.

Yes, our grass is luscious green and beautiful, but every other thing is soaked right through, like my pool lounge furniture and my muddy yard.

That's not a complaint, as there are those places where they need water so badly, so I AM thankful for the rain, but to see the sun would be nice too.

Brian and I are off on vacation mid week. We're going on a Caribbean cruise, again. Back to the islands and cruising. Best news is that I feel well enough to go. My long tune up at Duke is paying dividends....I am able to go Bon Voyage! Thanks Duke for tuning my CF up so I can travel. Thanks also to you, the readers, who have prayed for my health issues and kept your eye on what's going on with me.

I am also blessed by how the Lord has been directing me. I've needed some wisdom and guidance lately about some important decisions and I feel I have been given the answers I needed by praying about it and committing it to the Lord. Sometimes I can make a snap judgment based on morals and what is right, when there are other things to consider as well to get the whole picture. Brian has been helpful too in this regard, but adding his 2 cents worth, and that has helped steer me correctly. So wait on the Lord, I say, and let Him direct my path.

When I was last at Duke, the Rec Tech who came to visit me and keep me occupied was Vallory. Since coming home, Vallory has just graduated with her special training in Recreation Technology and will be going on a mission trip to Kenya in June. What wonderful adventures lie ahead for this young lady on fire for the Lord! I sense she is wise beyond her 18 years and this is in part, no doubt, by her intensive home schooled education. She has been able to discover so many areas of interest by not being confined to the public school curriculum and this had made Vallory an interesting character. Go Val!

In a few weeks, my sister and some of my family wil be coming here to visit. YEAH!! Sister #1 and her husband, plus their daughter (my neice), her husband and their 2 year old, are coming to terrorize us!! I've warned Brian that Kaeden is in his terrible twos now and pushing authority. Get ready for this tiny terror.......It will be wonderful to have them here for as long as possible. Up to 2 weeks for some, 1 week for others. Bring it on! My sister will be in the pool all the time. She is like a pollywog, always swimming around in water. Plus it's good exercise on her poor back. We love it when my brother in law Gordon is here. He adds life to the party and is a blessing in my life. I was just a wee lass in his wedding. I missed Hallowe'en that night because of their wedding and I have teased them forever about it.

Well as the sun comes up to begin a new day, I'll close here and move on to other tasks. Thanks for hanging in with me and sending me emails asking what's up. Life is up! I'm up! I'm living!  Love Lori  xOXo

May 20...One More Day....

Tomorrow, it's Bon Voyage for us!

We planned for this cruise 9 months ago, and Amen Jesus, I am well enough to go.

Here is what my sister Vicki, emailed me in response to my last post about friends who think I am dead when I do not publish an update here.....

Hi Lori, I, myself, am glad to see that you have not posted on your web site!  

That means that you are out and about, enjoying life!

I am glad though, when you do keep us up to date.  

Have a great relaxing cruise.  You two deserve it! 

I look forward to hearing all about it.  

Bon Voyage!   Vicki  

So while Brian and I are out cruising the Caribbean, let me also ask my faithful prayer warriors out there to please pray for a friend named Teresa, who had emergent open heart surgery yesterday for major blocked arteries to her heart. There was little warning, but we are thankful she had a warning, because heart attacks kill. Sometimes it's poof! You're dead. Other times, it's a nagging pain and a gnawing feeling something just ain't right. Those who are fortunate to get this feeling, just might be saving their own life! So in not feeling just right, Teresa was rapidly triaged in the ER and correctly treated so that a "drop dead" heart attack was avoided. Small blessings. Now for her recovery.

Lord, we thank you for the blessing of the life of Teresa and for bringing her into our lives as your precious child. We are ever so thankful that she had a "warning" and she did not have a fatal, life ending heart attack. We pray for the nurses, surgeon and medical team surrounding her, that you have provided them with the wisdom and guidance they need to do their job. They have re-plumbed her heart with new veins that are clear of blockages and we ask your ever present hand be there to show this family that many people love them and are praying for Teresa. We ask for these blessings in Your name, thanking You as the Great Physician. Amen.

Now it's back to packing. Blessings to you all! Love Lori

 

June 5th, Home...

WOW! What an awesome cruise. We've been home for a week, but I've been too busy to sit down and write. SO much to do. Unpack, answer 2 weeks of email, read mail, pay bills, take care of 5 kitties who were upset we "abandoned" them, play with 3 Sugar Gliders who hated us for leaving them locked in their cage, and having a small issue of no water at the home. Oy vay!!  But AMEN, nothing was broken permanently and all is fixed.

Our 5 furry felines, let us know, very vocally, how happy they were we were home. They purred, rolled around, hugged and crawled all over us to say "Welcome Home". Even cats know when you are not around. They should be use to my absences, as I go to the hospital a lot, but then take Brian out of the hose too, and it's a missing piece of their puzzle. YES, we did have our housekeeper live in, and they love her too, but they missed us. Then into the bed room to find the Sugar Gliders in their cage, upset we left them locked up. Our housekeeper doesn't mind them, but doesn't want to pay with them and doesn't like when they jump on her, so we caged them up. They were not happy. But that's done now and they have snuggled with us in bed every night and are well adjusted again.

We cruised on Royal Caribbean's Grandeur of the Seas from Norfolk, VA for 2 weeks throughout the Caribbean. Our next door neighbors, Ruby & Rudy, were in the cabin next to ours. It was planned this way so we would have fun together. They had a wonderful time and got out at ports to shop and explore. Brian brought his radio equipment and enjoyed hours on the balcony listening to short wave transmissions. He often slept on the balcony in his pajamas and wrote down call signs when he could of various stations. A great time was had by all!!

Best news is that medically, I was perfect!!  No issues that brought me to the doctor. Now I did get a wicked sun burn, but I had stuff for that. One guy did DIE on this cruise, but we off loaded him and his family in Puerto Rico and he died there a few days later. Too bad as the family was a long way from their home in Kentucky!!

Here is the evidence that fun was had by all....

           

        No Pirates on these seas!                                   Cruise ships in St. Thomas, USVI                       Shopping in the market in Haiti                          Wicked Sun burn for Lobster Lori

 

 

       

   Jaxson tried to Stow-Away and join us!             Ruby & Rudy walking around the ship                   Brian is so happy with his radio!                Captain Rob & Brian discuss their maritime

                                                                                                                                                                                                                               watches since they both have the same one!

June 11...

I wish I were out cruising now, back on the high seas, enjoying a good book and the buffets too. After a wonderful cruise where I ate way (or weigh??) too much, I was at the docs and the scale tells no lies. I lost 7 pounds. No way! Not after the scavenging I did at the buffets! Must have been all the laps I did walking around the decks and going off the ship at the ports of call to explore.

Today I reconnected with a friend......Randy "the Rat" Garnett, MD. Yup, it was my 6 month check in with Dr. Randy to amaze him with tales of how well Duke is treating me (You reading this, Duke??) I felt really rather well today, and had no real issues or complaints. Status quo is holding well. That's good for me. We talked about old times, and one thread of conversation was when I was in the ICU locally and with Dr. Randy at the bedside, I did not breathe for 3 and a half minutes! He rubbed my sternum to elicit a response but nothing. He was going to stick a needle in my eye next, but about minute 4, I took a breath. This is good. He remember sit because it knocked his socks off and he thought I was playing around with him, but you can't hold your breath that long and lay there like you are unconscious. He has never forgotten that, and the time I darn near coded in the Lung clinic and a code was called. It was Dr. Randy who was there and kept me from going ballistic with anxiety as I turned PURPLE from cyanosis. Darn trach tube!! But I learned how to deal with that hole in my neck and at Duke, EBT took steps to work with the stoma in my neck so it would not close as rapidly as it did that scary day in Randy's lung clinic.

So I am a beacon of health, with one foot in the grave and the other on a banana peel.

My family is arriving, more like trickling in, from Toronto area. My niece and her husband with baby arrive tomorrow, Friday for 8 days, then sister #1 and her husband arrive on Sunday for 10 days. I am ready, as is the house. THe landscapers should be finished up tomorrow as they have been here planting, pruning and trimming all week and will be done. The pool is warm, clean and a blast! Now it's family fun time, and best of all, I feel good! I am not feeling like it's time for a tune up right yet. I will say the very humid temps hit me hard with heat prostration. With CF, you lose so much more salt and chloride when you sweat than normal people that often I feel "limp", and drenched out. So get out of the sun, gobble down some salty pretzels, swallow 2 salt tablets, wipe the salt crystals off your forehead and hair line, and play harder! On these hot days, I can wipe my brow and show you the salt in my hand. Cool. So far, the neighborhood dogs love me and my cats use me as a salt lick.It's a perk of having CF! Life is Good.

June 14...

Family....I'm exhausted from all the FUN! Unusual for our area, but it has rained EVERY day for some of the afternoon. You'd think we were in Orlando with the daily rain here. But NOPE! Tidewater Virginia it is. Let me say my flowers, plants and bushes are grateful for the abundance of water!! As soon as we hear thunder, it's OUT of the POOL! My sister should arrive today with her husband. We attended a lovely graduation BBQ yesterday and the buffet was first class! Of course, it poured rain all afternoon, but round about 4 o'clock, the rain stopped and the party partied on. It was great!

We hung around here most of the time so far and played Wii games or watched movies. Tomorrow, I'm staying back at home while all else go out on an adventure discovering Tidewater, VA.

.....Fast Forward to June 25th!

WOW! What a wonderful time I had with my family here.

I was busy doing things and so active, I did not make time to write in this diary. That's a good thing. It means I was too busy living to think about dying.

Family has left for Canada and it's just the cats, Brian and I.

I had such a good time, I asked everyone to come back again next summer!!

Tomorrow, I am leaving on another adventure for a week, so it's Bon Voyage for me again as I live live at a busy pace.

I am not so busy that I have forgotten about y'all and those especially who are not well and need prayer.

I made a quick visit to my friend Cheri last week. I have talked about Cheri here before, and she is at the end stages of living with CF and waiting to die. But she has too much to do to want to die just yet. She amazes me with her strength to be able to have held on this long, when all else thought she'd be dead by now. Not Cheri!!  On her time, when she's ready.

My friend Anthony is also fighting his CF demons now and it's very hard on him. He was a non stop, go go go business tech who never stopped, not even to breathe. His CF suffered and finally, finally, he took steps to apply for disability so he could retire from working like a dog and devote precious time to breathing. Amen for Anthony who is looking after himself now....if not too late in the game. We who are blessed with CF have to live for every day, but it comes at a price. In a moment is can all be gone. Poof! Dead. So we live on the edge, fighting for each breath, trying to live for just another day.

So tomorrow I'll be off on an adventure and will return July 5th.

Look for me then.

God Bless you for checking in on me and for your prayers!

Hugs from Lori

                                                                                                                                                                                                                                                                                                

Home Again...July 5

I'm back in Virginia after an AMAZING Cruise...AGAIN. The only thing that would have made it perfect would have been if Brian were with me, but I went with a large group and he stayed home. So off I went and had another adventure to new places. Grand Cayman was OK, but Jamaica was very poverty stricken. Yes, they have nice tourist spots to see, but most everything is wrecked, beaten up or without a roof or walls. It's quite dangerous in Jamaica and we were not to go out exploring without a tour guide. Creepy. But with the bus load of us, we climbed Dunn's River Falls in Ocho Rios and went to Turtle Cove and then to Dolphin Cove. What a nice event to do. Then to the Tortuga Rum Factory for samples of rum cake as whiffs of marijuana in the air permeated the country side. Some of it was even growing wild, next to houses. It's a legal drug in Jamaica, but still has some stigma attached to it. Visitors better not get caught carrying it, or it's JAIL time.

The meals were grand and every night, we all ate in the best restaurants they had. They were good with varied choices, like chilled melon soup for a new choice. I like soup HOT, but their soups were a unique variation on cold fruit. So I have another cruise experience under my belt and again, nothing spoiled the fun we all had. Just another adventure in Paradise.

July 7....For Shannon

Always remember the compliments that you received. Forget about the rude remarks.

The only reason that anyone would ever hate you, is because they want to be just like you.

A smile from you can bring happiness to anyone, even if they do not like you.

Good friends are like stars, you don’t always see them – but you know they are there.

I would rather have one rose and a kind word from a Friend while I am here – than a whole truckload when I am dead.

Happiness keeps you sweet, Trials keep you strong. Sorrows keep you Human, Life keeps you humble.

"And forgive us our trespasses, as we forgive them that trespass against us" ...From the Lord's Prayer

July 8...

"Why the somber post of July 7th??" readers emailed me.

A dear friend needs your prayers.

I need your prayers.

Let me just say feelings were hurt and horrible words were exchanged.

After 10 years of having a loving, Christian friendship with this person, they turned on me.

Satan was having a ball, laughing as the Demons of Hate spewed from this persons mouth.

It is so unlike my friend to behave like this. So out of character. I was SHOCKED.

My way to deal with it was to pray about it and to have another Christian friend I trust, spend time on their knees too, asking God to touch the heart of this awful person and bring her to her senses.

I may never know if it worked, but it's in God's hands now.

I have had to block their phone calls, texts, emails...you name it. ZERO contact.

May God heal her Soul and bring her to forgiveness.

I have turned the other cheek.

I forgive You.

Love Lori.

 

July 19...

My, have I been busy.....Just doing stuff and enjoying the hot weather. 2 days ago, we have a torrential rain storm that cracked out lightening so hard you thought it was right next to you that lightening struck. The cats all ran and hid under the sofa and cowered for some time. I was out running errands when it started and marveled at how dark the sky got and how the rain POURED down. It was wonderful. Soaked I was as I drove home and into a freezing house as the AC had been on cold all day. Shocked my skin. Warmed up and watched the rain. The pool gained a few inches of water and the flowers and grass asked for more. Not a bird or animal were around the backyard. Soon, it was all over. the sky calmed down and the sun came out. Then yesterday, Saturday, was pool party day here. We hosted a birthday party that included a BBQ and a movie. So before the kids got all wet in the pool, they watched a movie then jumped in the pool. They finished their day with snow cones and had a good day. We often are asked to host birthday parties here as our house is on the large size and people like the WOW factor coming here. We also enjoyed a huge watermelon and it was soooo juicy!! Summer in the South is so predictable. Gotta have Watermelon!

A few nights ago, our Sugar Gliders got out. Randy, Mousey Mouse and Joey escaped the room they are supposed to be locked in, and got out. It was MY fault as I left the bedroom door open. So as I was heading to bed about 11PM, I noticed the door open, and that was not good. Sure enough, NO Sugar Gliders. All 3 of those rascals had escaped!  I called for Brian and we searched for them. In quick order, I found Randy first. I walked onto my walk in closet and saw my stuffed pair of lungs, on the floor. (Some people have stuffed bears, I have stuffed LUNGS). "Now why would they ( the stuffed lungs) be on the floor?", I asked. So then I knew a Sugar Glider had been in my closet. I looked around and there was Randy....dangling from my hanging clothes. This one is called "Randy the Rat" and he was playing with me. So I called for Brian and he brought in a bowl of worms, and sure enough, Randy was coaxed into safety by a bowl of worms. So that was one rat (Glider, really) down, 2 more out there.

Brian went into my office and sat at my desk. He looked above at the curtain rods to see if any Sugar Gliders were there. Nope. But Mousey Mouse was at the keyboard of my computer and Brian called to her and she jumped right onto his shoulder and hitched a ride to the bedroom. Now, where was Joey??  We looked high and low, and then I found him....way up on the curtain rod in the den. I asked Brian to come get Joey but he would not budge. So out came the bowl of worms and like a magnet, Joey came down to the worm bowl. Then Brian got him in his hands and took him back to his cage. Done. Rounded up 3 Rascals! Good thing none of the cats were in the rooms they were loose in. Whew.....got all 3 rats (really they are Sugar Gliders) but we call them RATS when they get into trouble, and had them all back into their safe surroundings. Lesson learned again about keeping the door shut. These 3 Sugar Gliders know us by sight and smell, and come jump on us when we come to bed. Cool.

Here is one of the captured Sugar Gliders.

This one is Mousey Mouse and she feeds right from Brian's hand.

They love MealWorms to the exclusion of all else, but their

diet needs variety, so they get fruit, carrots, ham, cheese,

eggs, raisins, celery, roast beef and cupcakes too!

They used to eat healthy foods, but now they are so

carnivorous, it's MEAT all the time. Go Meat!

PETA would try to rescue these friends from our home,

because they like meat, but it's their choice.

Go MealWorms!

Isn't she real cute??

 

 

July 22...

Yesterday, our Landscaper, Eddie Gosman & Associates, delivered an unexpected surprise to our garden.

Here it is:

Scripture Rocks engraved with two of my favorite verses in the Bible.

A week ago, Eddie Gosman Jr. emailed me and asked me what my favorite scripture verse was. I sent him two.

Then a week later, he showed up with these two GEMS!

Look at the close up photos. Very accurate and painstaking handiwork to do this.

Eddie knows the family that creates these, a crew named William & Wendy who live about 20 miles away.

They are new to this business and are branching out, hoping the message of Christ will reach out with their stones.

They will custom etch mostly anything that can be etched.

Here is a link to their web site.

http://www.etchitnow.net/

THANKS to Eddie Gosman & Associates, our Landscaper, for giving us these gifts!

Our garden now "speaks" for us.

Here is Eddie Jr., showing me the 2 new stones he just laid, followed by more photos of them. Isn't it wonderful what they can do??

 

July 23...

Today I did something I have NEVER done before.....

I picked up a hitch hiker (2 of them, actually).

WHY???

They needed a ride, I felt no sense of alarm, and because my father would have done it.

Plus I thought for a moment what if I were the one out there needing a ride??

My father ALWAYS picked up decent looking hitch hikers when he had a seat in the station wagon for them.

Some of these people where not nice looking either, and I always thought they were going to harm him.

He was NEVER harmed.

My father also ALWAYS witnessed to these people about God.

He had Bible tracts in the glove box and he always started out by asking a loaded question....."Do you have a relationship with God?"

That always opened the conversation wide open.

So today, I was driving on the highway and saw 2 people.

I stopped for them. (Brian will KILL me when he finds this out).

I drove them 30 miles to where they were getting a westbound route and before I let them out at McDonalds, I prayed with Jessica and Jason.

They were on the road for 10 months now, having hitch hiked from Boise, Idaho to Florida for a job that didn't pan out, then having his wallet stolen meant no ID.

With no ID and no money, they pan handled for months to get enough money to eat. They slept out under the stars on broken down cardboard boxes and said the adventure was a good thing for them. Now they were heading West...home.

I gave them my gas money of $60, prayed with them and drove to McDonald's where they were very grateful to have a good, hot, cheap meal!!  They wanted to be close to the freeway so they could hop on the highway for another ride going West.

Only the Lord knows what their travels and adventures have been like, and how truthful and honest they were with me.

But for this moment, for this time, they were safe with me and I felt the Lord was covering me with His hand.

We parted ways. Happy Trails, Jessica & Jason, and Godspeed on your journey home.

August 11, 2009...

I spent most of yesterday afternoon upset....

My week did not start off on the right foot.

I was not recovering well from feeling CF sick and I spent all of Monday in bed, sleeping. Until the phone rang.

It was Chase. Our Visa credit card company.

Did we authorize 2 "suspicious" VISA transactions in Wisconsin (or maybe it was Wyoming) and Texas in the past 2 weeks???

I racked my brain and very confidently said "NO! Check with Brian....Sounds like something he would do".

So they call Brian at work. "Nope. Not my charges".

So Visa then hangs up and makes a 3 way conference call with me, Brian and them (Visa).

Turns out they noted some suspicious VISA activity about a week ago and watched it. Then they called us.

You think I'd be glad they found this, but NOOOOOOOOOOOO......

I am at terrible loss.

You see, ALL my monthly charges are automatically charged to my VISA card, and when they are all denied at the end of the month, oh no!!

I begged Chase NOT to shut down my credit card, but no go. ANY COMPROMISE means the card is cut. Closed out. Denied. Dead.

So that means I am now spending HOURS calling every vendor I can think of to inform them that the account has been compromised and the VISA card transaction will be denied.

That they have to send it through to Visa, generate a denial report, and then mail me a threatening letter asking for immediate payment before the account is closed.

Think of those venders who you use every month to pay bills: you might pay the phone, cable, internet, health insurance premium, propane, book of the month club, etc.,

Brian said he'd take time off to deal with it by calling all the vendors, but it's something I alone feel I have to do.

When I'm dead, THEN he'll be the one to deal with it, to cancel the non essential billings in my name.

Until then, I am in lock down mode and will begin tomorrow to reach out to these monthly vendors and get it taken care of.

You might think......"Isn't that what LIFELOCK is for??"

Well, we DO have LIFELOCK (www.LIFELOCK.com) but that's only good AFTER the vendor is threatening YOU for payment. For us, VISA caught it BEFORE it got to that level).

So as I mutter around, I now know there is a price to pay when we allow technology to seamlessly enter our lives and agree to have all our bills paid online out of our credit card account. Sometimes, that mole hill comes crashing down, and when it does, WOE to the little ant in that huge mole hill.

I have learned a lesson from this. Brian suggested perhaps we ought to go back to paying monthly paper bills, but the cost of postage is ridiculous, checks sometimes don't make it to their destination, and it is all so much easier when technology offers better options, like automatic bill pay.

So be like me.....learn from this and compile a list that is easy to find, has all the companies that auto bill you each month, along with your account number, their phone number, and your credit card number, all in a secure, easy place for you to find. So that when your credit card IS compromised (not if...but WHEN), you'll have an easier time of notifying everyone why your payment was rejected.

Makes me love, and hate, credit cards.

Be Well,

Love Lori

September 1

Oh where O where has our lost Lori gone?

Oh where O where can she be??

She's living life to the max right now

And is living life happ-il-ly

I'm not dead....I had a wonderful past few weeks and was too busy (or tired) to write.

Thank you to those email buddies who asked me "Why no updates?"

I was tired from my very busy days.

We had some major pool parties here in the past few weeks and that took my time.

One party had 38 people here, and 18 were in the pool!

It was fun for everyone and the kids and adults had fun.

Another pool party was a bit calmer, fewer kids, and the skies were overcast, but we sure had a good time.

There was plenty of catered food from Great Bridge BBQ and Ckick-Fil-A.

Here is the evidence of FUN!

   

So there you have it. Proof I was very busy.

OK....life has calmed down a bit, just in time to head to Califormia on a business trip in a week.

Hey, at least I feel well enough to travel, eh?

More later,

Love Lori

Rejoice in the Lord always. Again I will say, rejoice!

Let your gentleness be known to all men. The Lord is at hand.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Philippians 4:4-7

October 2

Home Sweet Home.

It's always good to come home. I had a wonderful time in California. I loved the Farmers Market in San Francisco and fresh chocolate croissants from Acme Bread each morning. Most everything was great, except the rampant homeless problem. The homeless people are EVERYWHERE. In fact, the city kinda encourages it by giving the homeless so many opportunities to remain homeless. I spoke to a few guys asking for spare change and they said the shelters are too strict. They require you to shower and to vacate your bed by 8AM every morning and you have to be in the shelter by 6PM to even get a bed for the night. These guys don;t want any rules holding them back, and having to abide by rules makes them not want to conform, so they electively choose to be homeless. Plus they said, you pick up too many bugs in the shelters (as in fleas, bed bugs, body lice, etc.). The warm weather, lack of rain, and tons of social services encourages be homeless, and there were so many of them!! EVERYWHERE!!

OK...there still were real cool things to see and do. My friend Susan Tom came to the city to be my own personal tour guide for a whole day. What a day we had,   going all over and having a good lunch too! Thanks Susan!

But seriously, I did go to SF for a business meeting, so when I wasn't playing, I was in meetings.

The National Assn of Medical Examiners had as its theme, Transportation related Fatalities, and all the cases were focused on that subject.

It was a good meeting and I am glad I went. Next year it is in Cincinnati, Ohio, then up to Alaska in 2011.

Here are some photos of the FUN I had, both in San Fran and in San Diego.

You can see at Fisherman's Wharf, on Pier 39, they have TONS of Sea Lions and Seals here. They are a protected species and the tourists flock to see them.

I would not be too far off to say there were about 1000 Sea Lions enjoying a nap on the piers.

When my 10 days in San Fran were up, I flew down the coast to San Diego, to meet with a long time family friend. Enid has known my family for 30+ years and her two sons always spent their summers at Grandmas house, in Toronto, which is how we know each other. I grew up with her 2 boys. They now have families of their own and welcomed me like a long lost sister.

I rented a car and scooted all around and did LOTS!

Enid lives in Mission Hills, a very expensive place to live, and it's a must have address in San Diego. I had a full guest suite in her home, and my own personal cat too. Her upstairs cat is called Renee, and she slept with most nights and licked my face as I slept. Renee was a wonderful reminder of what I'd left back at home....my own 5 furries.

I went to Sea World, to the San Diego Zoo, shopping at Fashion Valley, and had wonderful meals in Old Town.

I also met up with Professor (now retired) John Ingham and his wife. John was my prof at U of T for 3 years, and we have kept in touch. Perfect since he has just retired to San Diego and I was just 1.3 miles away from his place. We 3 met up for dinner one night. He is well and looks great!!

Enid and I went to the exhibition at Balboa Park called Body Worlds. It's donated bodies that have been plastinated and put on display. It is a wonderful show to see the body and teaches about the body and disease.

I saw a similar one about 4 years ago in Norfolk but they used only Chinese bodies. They were slim and definitely had Asian features. It was said they were all prisoners. This exhibit in San Diego went to great lengths to tell you they were all consenting, donated adults who chose to be plastinated for teaching. I liked this exhibit better.

Chris and I spent a day at Sea World and had a nice, HOT adventure there.

Andrew and I spent a day at the San Diego Zoo and rode the tour tram all around.

Both days were wonderful and very HOT!

In all, I had a great adventure. Why great?? I stayed well, had no medical emergencies, and was prepared for them if they did arise.

No trip to the ER for anything this time and I stayed well and felt well. Amen for this trip that gave me some rest and lots do fun.

So now I am paying lots of bills that went unopened during my absence, replies to tons of emails, and am now settling in and have got the laundry all taken care of. Whew!!

I am blessed Brian did OK without me here, and that all turned out happily.

I hope to return to San Diego next Fall to visit again, Lord willing.

So there you have it. My Lori update. Thanks for hanging in, wondering when I'd be back and praying for my safety.

With Hugs,  Lori

October 8

The weather here has been wonderful! Lovely cool, crisp summer days without the humidity of the hotter summer months. I have enjoyed sitting on the front steps with my cat Taylor, and letter her wander on the pavement. She seeks out a spot warmed by the suns rays, and lays there, turning and using the warm cement as a back scratcher. Taylor is 14 years old and is not well. She'd been a diabetic cat for 3 years now and get this...she even gets 2 insulin shots every day! You've got to really love your pet to keep that going! I didn't think I could inject her, but both Brian and I do it everyday now with ease. Luckily, we have those insulin pens, so we dial up the units needed, and inject, where previously, we were filling up the syringe and hoping we got the right dose as the numbers and calibrations were very hard to see. Even our pets have their own medical "toys" to make their life easier.

We closed down the pool today. It meant just pushing the remotes and the pool cover came out over the pools and closed them off. Done. Also closed the solar heating return pipes so there would not be want water to freeze in those pipes and burst, as they did last year. Done. Our backyard is buzzing with animals and critters. In fact, yesterday, to my horror, I found a dead, 16 inch snake skin! I was cleaning up the furniture and saw it, and it made me weak kneed and pallor. I hate snakes. Even the so called good ones. I hate them.

It's so very nice outside that laying out on the desk with a good book is magical. I have recovered from my travels to California and indeed, life is good. God is so good. Any time, I could back in the hospital, feeling sick, and losing the wonder of each day and the beauty it brings. I hate being sick, even more than I dislike snakes! Each day I am blessed to wake up alive and breathe, is a blessing. We take it for granted that it's just another day at work, but until you lose that ability, you don't appreciate life. I am so blessed. Very blessed.

I received an email announcing a support group meeting for adult with CF. The featured topic is to be "Moving from the moody blues to a golden smile, coping with anxiety and depression. for CF Patients* and Their Families." Why a blue star *after the word 'CF Patients'? This is the humorous part of it........ the little star is the highlight of the whole show......because it then goes on to tell the reader that..... *Patients with CF who have ever cultured B. Cepacia or MRSA in the past 2yrs, or have any bacteria resistant to all antibiotics, will not be able to attend at this time. Well HELLO!!!! I just got a little chuckle from the fact that (for this particular meeting and its goal) the most likely to be sick, depressed or anxious among us, are those very CF adults barred from attendance.
I understand it completely, you know germ sharing = bad. I already am a CF Social Leper and belong to a club just for those pool souls, but I just found the context funny.
Pleasant evening, y'all.

November 13 --Thank You Lindsy

.... for that Heath bar you shared with me today.

I'm slowly coming back. You did notice I was not posting much, eh?

Well, I was burned by a psycho cyber stalker [who shall remain nameless] and so I went off the air to cool down.

Now, during my time underground, I did so many neat things that from this point on, I'll just continue on and not try to play catch up on the time I was missing.


Now, about Lindsy: she is a wonderful member of the Duke Pulmonary team and is a Patient Resource Manager who does so many things to make it easier for you to navigate the Duke system, both before, during and after lung transplant, and also for those (like me) not going the transplant route. Well today, just now, she knocked on my door and delivered to me 2 Heath nibblers. She confessed she is a quiet, late night internet lurker hiding in the background who logs on from Durham to see how I'm doing, and she read that I like to eat Heath bars. So she walked from her office to my room here at Duke and brought me 2 mini Heath bars.

Lindsy asked why I've been quiet on my web page and have not been updating it with current news, and I told her about a "so called friend" who pulled some jealousy stuff on me and that she was cyber stalking me and bullying me. Let's just say that the nastiness has stopped and because my family relies on logging in to see how I am doing, it's more important to me that I keep them updated than to bow down to a bully. So I am going out on a (thin) limb and will try to keep you updated.

I even had some long distance inquiries from England as to my well being. Readers there were also stymied to not read current happenings about me so much so, that they contacted my husband's employer to ask how I was doing. You see friends, the internet can be both a wonderful thing and a curse. So I'll jump right in here and tell you what's happening today.

I am at Duke for a CF flare. I had a triple lumen femoral line placed in my right groin to allow for IV administration of antibiotics. It took 3 attempts to get the vein and boy! did it HURT! This is my 17th femoral line!!  17 is a miracle. I am certain my medical caregivers never thought I'd get this much usage from it, so it's nothing short of a miracle it has lasted this long. Speaking of medical caregivers, Dr. Kussin flew the coop. He is on a medical mission team in Indonesia. He came in the day I was admitted to tell me he would be handing my care over to Dr. Faulkerson while he went away. I have been praying for his safety and to come home in good health. We need Dr. Kussin here to take care of his adult CF patients and the staff feels his absence, so they too, want him to return, if only to lessen the load they carry in this large teaching hospital.

I had a conversation with my travel agent about 3 weeks ago, who told me there was a GREAT, last minute travel deal on a week long cruise to the Bahamas, from Norfolk. So off I sailed. I also brought along my housekeeper and her cousin, so they both bunked together in one cabin, and I had my own cabin. It was wonderful and I had a relaxing time reading and doing little else. They had a great time and we went shopping in the Straw Markets and toured Atlantis. It was that easy...I want to travel so I have to bring a set of eyes to watch over me. So you get to go for free in exchange for having dinner with me and making sure I am breathing. Any volunteers??

Last night, Tidewater (the area we live in) was beaten hard by hurricane force weather. Brian was off work for 2 days as Norfolk always floods out. He said we had a lot of tree branches down but no structural damage, Here in Durham, it's rained 3 days straight, and the plants are really happy! So that's my much awaited update. I am well, getting better, and am thankful for the blessings in my life and for people who care  about me and love me. Negative people only hurt you, so dump them and move on. Love Lori

 

November 15

Brian and I had a good day together. He spent all of the time on his laptop, listening to broadcasts and surfing the internet, while I sat up in the chair and paid bills. It was a nice day outside and so the sun coated my walls with its glistening rays of happiness. Weekends at the hospital are dead time....very dead. It's very quiet and patients are not in a hustle to get transported for tests. I nodded off in the chair and Brian went down to get some lunch in the cafeteria. I am doing better on this triple IV cocktail of antibiotics and  have a planned discharge home on Friday Nov 20th.

The flux and flow of life and death on this floor continues. A patient with CF died a day ago, and yet another one was discharged after a successful double lung transplant. When the team rounded on me on Friday, the conversation changed to transplant options for me and I voiced my opinion that were Duke to approach me with the offer of a double lung transplant today, would I sign up for it?  NO. Knowing now what I know of the whole spectrum of lung transplantation, and having come so close to having it, I would gratefully decline and walk away. It's no longer an option for me. I have lived longer now without the transplant, that to do it would almost certainly kill me. So call me a fool or a realist, I would still say "NO".

That said, I am 1000% in favor of those choosing this option, to experience every success and a positive outcome! Who doesn't want to breathe, eh? But at what price?

My friend Shannon is having a horrible medical mystery with CF liver cirrhosis and bleeding, She is a real trooper. She is hanging on and fighting to live. Would you please pray for Shannon and her family? She has 2 boys and a husband who would appreciate your prayers that the Lord would be her portion each day and that she can see Christ's hand in the medical events playing themselves out. Just commit Shannon to the Lord and ask for His blessings to heal her body and for her to feel the love of God surrounding her every minute. I love her dearly, and she is having a rough time. Pray for showers of blessings! Love Lori

November 20

The medical team looking after my care just rounded on me. I was delighted to see Edana, the CF Clinical Nurse Practitioner leading the discussion. I have not bounced back as expected and by now, day 15, I should be going home. I am taking longer to get a hit from the IV cocktail this time, plus I lost about 8 hours when my line came out and had to be replaced. Dr. Steele is pondering ways to make me better and to cure my wheezing. Despite the drugs Albuterol and Xenopex, I still have wheezing. This means my lungs are being squished for air and clamping down. He wondered out loud whether 3 weeks ought to be my tune up time here and not to rush me out the door any sooner, the way I typically push for discharge. Now that is a new thought. I have always felt that the DRGs (Diagnosis Related Group) determined how much time they considered was billable hospital time. Meaning....their guidelines say that for CF, you ought to be fixed up and sent home within 14 days. Days longer than that, cost the hospital money. Leaving before that, earns the hospital money. I felt that if I were home within 14 days, then I was doing better than the CF mainstream, and must not be "as sick" since I can be tuned up and discharged on time. Some of this idea came from the internet chat rooms I am on, where the idea is that a set amount of time is given for you to get in and out, and sometimes, people are sent home and they have not achieved the maximum benefit of the tune up. Many of the CF adults in the internet chat rooms stay for 7-10 days then are home, back to work or to school. It is the "sicker" ones who stay beyond 2 weeks. My way of seeing it was that I tried to get out sooner than 14 days, to fit in with the norm and believe I was on par with the other CF adults out there. I was, and am.....wrong.

A whole range of circumstances come into play to determine the effectual benefit of your tune up and for me, I am often NOT at the max benefit in 2 weeks time, yet I push for discharge to be perceived as being in the normal group of CF adults. This has harmed me. I have been corrected in this thinking by Dr. Steele and my nurse Erin, who discussed with me that there is no clock here that ticks away the time I am here. When I am clinically better and feel able to return to work, then I'll know when it's time to be discharged. It is not necessarily an indicator that my CF is "worse" or that I am not doing well. It could mean that my CF bugs need a longer, more aggressive treatment protocol, or that the meds need "tweaking" so I am on the correct ones. With all this being said, I am more comfortable sitting here a bit longer, knowing my body is taking it's time to heal itself to a place where I am more functional and that when I get there, I'll be asking for discharge orders to go home, because I'll know it's right for me. .

There. I've spoken of my angst about staying longer than MY expectations and what that could mean. I am 45. many people do not live that long with CF. There are less than 1200 adults living in the US my age with CF. So continuing my miracle of living takes longer. So, here I sit in my hospital bed, thanking God for bringing me up to this day and trusting Him for the blessings yet to come, despite yesterday which was a bad breathing day for me. I was short of breath just doing nothing, but I was able to praise God for the view of the clouds outside my window and rain the splashed my window. .

A visit from the CF social worker meant I had company late yesterday afternoon, plus Brian called a few times to check in with me. My sisters Vicki (#5) and Noreen (#1) called to tell me how their day was going and that they loved me. Vicki and I have a date at Disney in December, to celebrate being sisters. In February 2008, my sister Nancy (#3), and then in February 2009, my sister Dolly (#4), spent a week with me at Disney's Grand Floridian Resort & Spa for some intense sister bonding, smiles and memories to last our lifetime. Well soon, it's time for the same retreat with my sister Vicki (#5). Lord willing. So wheezes be gone, lungs open up, and CF bugs? Go hide you wretched evil organisms.......it's soon my time to have fun with my sister....living.

November 21

It's early Saturday morning and I did not sleep. I have instead been watching documentary videos on my laptop computer. I have a subscription to a British film company called Journeyman (go to http://journeyman.booserver.com ) and they produce world wide documentaries about current affairs and I enjoy logging in and watching stories of life from all over the globe. I also have watched hours upon hour online at the PBS.org affiliate web station, watching Frontline, American Experience and Point of View. These are all tv stationed carrie by the local PBS stations in Norfolk, VA, and as it happens, is my husbands employer. We decided to step up and support the programming of PBS stations as it (generally) brings quality family viewing to the house. So this Fall, we joined as members. Now I get my email box deluged with reminders of shows to watch and when to tune in for specials. It's a good thing to support. The PBS programming is free to all, unlike the Journeyman channel I watch.

Very early this morning, my IV antibiotic cocktail was hung and as it dripped away, I was thinking how grateful I am to have access to these meds and to Duke. Brian's job provides excellent medical and dental benefits for both of us which allows us to go out of state for care. There were 3 options to choose, and the most expensive plan suited us best as it alone, allows us to look elsewhere outside of Virginia for medical care. Great option if you have a cancer needing treatment say, at MD Anderson in Texas. Whatever.....it's a good plan that I don't want this retarded president of the USA mucking with it! Don't get me started on how deeply and passionately I dislike the current president. I am certain he will NOT be re-elected for a second term in office. However firm my stand is, I still pray for him. He is in that position because God wanted him there, so I have to pray to God to guide him along, even though he is going to go down in the history books as THE president who caused/allowed/promoted the downfall of the greatness of the nation we are currently. http://journeyman.booserver.com/

OK...so back to my early morning insights....I have a lovely view of the Duke parking tower and the sunrise is usually awesome. It's been raining here most mornings but today I was greeted with a brilliant splash of reds and yellow in the morning sky that I was reminded that if I were not here today at Duke, I would have missed it. So there is a reason I'm still here, healing and getting better, if only to have been touched by Gods morning hugs in His sunshiny sky.

I looked up at the bag of IV antibiotic hanging as it had infused into my vein and I saw that the bag had been typed with the word: Pneumonia on it as the reason it was being given to me. That's news to me. Must have seen an infiltrate on my chest xray or something. The team will come see me later this morning. O goodie! 

November 22

The knock on the door came too early, waaaaaay too early. It was just 7AM when he came in, gowned, gloved and masked. He did a cursory physical exam, listened to my lungs, and left. He said his name was Dr. Zaas. I went back to sleep. The next knock came too soon, it seemed. This time, it was Will, my nurse. He was loud, full of sunshine, and wanted me to wake up. Welcome to my Sunday, here at Duke Med. Time to rise and shine and give God the Glory, Glory! I had such a good sleep last night, I was surprised it was over. How could morning have come so fast, I wondered. Up and at 'em, Next Boyd came him. Boyd is a big teddy bear shaped Respiratory Therapist. He was here to load up the meds I needed to inhale. He brought me lots of goodies, and it takes an hour to do it all, and then jump on the Vest and shake the junk out for another hour.

Here's a photo of Boyd peering through the IV lines, as he begins to get my inhaled meds prepared. Where has my morning gone? Brian will be here soon. He arrived yesterday and we had a nice time together. We talked about whatever came up. We ordered in Chinese food and sorta had a nice hospital date. It was as good as it comes for being in isolation. He'll be back soon, to spend today with me, before heading home about 3PM for a 4 hour drive home. I wish he could stay all day. He would, if I really wanted him to, but I know he needs to work tomorrow and he'd prefer to drive before it is dark black outside. Any moment now, he'll come knocking on my room door..

I had a wonderful afternoon visit with Brian. It seemed to fly by, and he had to head out for the drive home alone. My nurse Will, who is always a tease, took care of me today and changed my femoral line dressing since it is leaking again. When I stand up, fluid from the IV runs down my leg. This time, the sutures had once again come out, so nothing but a band aid was holding the line in. Amen it did not come out. I would have been miserable if I had to go back down to the OR suite for another line replacement at this stage in the game, but if that was worth it and I'd go home feeling better, then the decision would have been to go for it.

My neighbor Ruby sent Brian with a fresh out of the oven Pumpkin loaf for the nurses. They were thrilled to get it and ate it in the nurses lounge when they could escape for a quick nibble between patients. I don't know who chose my dinner menu but it was yucky. I asked instead for a PB&J sandwich. Now that's good old comfort food.

I looked and felt better today, according to the nurses and Brian. I am hopeful I'll be coming home soon. Hello to all my family in Canada!  Love Lori

November 28

Home. My bed welcomed me with delight. I crawled into bed and slept. The next day was Thanksgiving. Indeed, I had a quiet Thanksgiving with Brian. Our neighbors, whom we adore, had us over for a FULL American Thanksgiving dinner. It was so nice to sit down and be thankful that I was there, at the table and out of Duke. Another blessing on my side of life. I came home and fled straight to bed. I just love my own bed, so I fell asleep in its comfy arms while Brian checked me every hour. The cats swarmed me and 4 of them slept with me on the bed. One was right on my chest, purring, as she told me the horrors of being left alone for 3 weeks with the Brothers Grimm. These 2 siblings plot ways to make Puddy cat miserable, and they always gang up on her. Taylor rewarded me with half an hour of straight cuddle time. Indeed, I was missed by the furries. Then when the Sugar Gliders came out, they all attacked me, as they do every night. They love my trach, and so try to eat it, bite it and run off with it! Brian always rolls over and they jump to him. They really like him. I am happy again and glad to be home....But not for long because I am about to meet my sister for some special bonding time together. Sister #5 and I are off to do something wonderful. That's it. Gone. See ya after December 15th. Be Blessed.

SLACKER LORI

OH dear me....It's true...For the first time in my life, I've been a SLACKER! I had a WONDERFUL time with Sister #5 at Disney for 10 days and before she arrived, I played with Donna for 5 days at Disney. In all, it was 2 weeks of bliss. The whole of every park decorated in Christmas hues and it was beautiful! Lots of color and in the background, Christmas carols were piped into the speakers throughout the parks in a hushed tone. It was nice NOT to see PC (political crookedness) taken to the extreme and Christmas banned at Disney. Nope! They promoted Christmas and had traditional carols playing and even said "Merry Christmas" when you were greeted. What's NOT to like at Disney?? We stayed in our home based resort, The Grand Floridian, and went every where from there. I rented a Jazzy scooter and strapped on 2 portable liquid Oxygen tanks so I could whiz around for about 5 hours before returning for refills on the O2. Then I'd nap, and we'd meet up for dinner. My sister was up and out of the room by 7:30 AM EVERY morning and on her way to explore! She did like 7 tours of the whole place and saw all the Behind the Scene Secrets. She swam with the Dolphins at the Coral Reef exhibit in EPCOT and we were entertained by an animatronics mouse "Remy" while we dined at Chef de France in Epcot. I LOVED the Disney movie Ratatouille, so for special showings only at the France pavilion, a little tiny remote "Remy" comes to visit you at lunch. It was SO COOL!!  Here is a picture of my friend Remy at my table, talking with me and moving around. Here are a few more photos of the FUN we enjoyed together. On the Right side, Vicki is holding TINKER BELL in her hands. See the Magic??  Vicki also LOVES roller coasters!! Much more than I do. She is a Fanatic and goes on every one of them and then gets Fast Passes for the ones where the line is too long to wait. We took photos as we whipped around the rails on the Thunder Mountain ride in Magic Kingdom and then at Expedition Everest in EPCOT. See her?? She is screaming in laughter as we ride around. And boy....does she SCREAM!!

She warned me about this before we went on our first ride together, which was nice, because she YELPS it out and has a GRAND old time!! You can see my right arm and sleeve in the photo to your left here. I was clutching on to the rail bar and my feet were wrapped around my oxygen tank to make it stayed in place. Whew! I liked that Expedition Everest ride. When we finished (it was over waaay too soon) the line up was too long to wait to go again, so we moved along to other things. What a HOOT Vicki had!

 

Brian,... being the sentimental guy he is, and knowing how much I love to be with my sisters, arranged for this to be sent to our room. It was a HUGE Disney Character Cookie delight for Vicki. We shared the HUGE cookies with our friend Mejay at the Concierge desk and with Eugenie, the afternoon snack genie who always gave me fresh slices of Banana bread and looked after all my munchie needs. I am fortunate to be able to go to Disney once, sometimes twice, every year, and with Vicki, I have finally met someone who really loves it more than I do. I think my pal Stephanie Rayfield is a close match, but Vicki flew 3200 miles to get there, so she came prepared---notwithstanding the fact that her luggage was delayed for 50 hours and she had NOTHING to wear!! The Grand Floridian concierge stepped in to comp her some $$ to buy essentials, amen, but darn it all....her luggage ended up in Indianapolis, which is a far cry from Orlando, Florida!!  OK...tears of joy when the luggage DID finally arrive, but it could have spoiled her whole stay! Amen it did NOT.

Me?? I loved my time there but think 2 weeks was a tad bit too long. I'll try for 7-10 days next time. But I can;t complain...I was at Disney!!

After I got home, I just slept for a while to recoup my energy and to get ready for Christmas. What a wonderful Christmas time Brian and I spent in quietness together. Just here at home, enjoying each other. Later that day, we joined our neighbors in a Christmas FEAST! We were welcomed once again to join the Stancill Family and the blessings were wonderful! Such a lavish home cooked dinner, and desserts to go around a few times. As pant buttons "popped" from expanding waist lines, everyone was full as we retired to the front room to chat. What a perfect Christmas day!

Now we enter a new year. Economic prospects are dim as this government is absolutely not doing the will of the people and unemployment is now 10+%. We are in perilous times, and only with our faith and eyes on God, will we have the strength to get through this. There are happy times ahead, but ground yourself in Faith and Moral to be able to see the sheep who comes dressed in wolf's clothing. And Pray for our Nation. If we keep shoving God out of His place, He won't be there when we need Him.

Expect Blessings. Expect Miracles. See y'all next year. Love Lori.