Thursday Dec 8, 2005.

*** This is the first of several written "diaries" from my very first hospital admission in 2005. I had written it on the pages of a notebook, and accompanied my words with a large drawing of a girl (me?) holding her head in pain while wearing a shirt with a bird on it. Next to that, were the lyrics to Alicia Keys' "Caged Bird" (still a fave of mine to sing in the shower). Also included were a weekly chart: M, T, W, etc which was mostly crossed-off, an "I miss you Smuckers" statement (my job), and a time-schedule of my iv meds.

Despite my high embarassment at these diaries, I like looking back even now because I have grown from the petty fears I once let control me surrounding CF. I also can use this to take a look at the way I'm confronting transplant currently. Finally, I like to think that when I am through the hardest part of the transplant journey, I can point CF'ers to these words and show them that I most certainly was right up there with the most fearful of 23-year-olds, and if I can do it, they can. Enjoy. ****

It's always something now. First the car accident has me feeling sick over buying a car, now I'm on a hospital bed looking at over a week at least of medical hell without work to keep me fighting. But I have to fight. More now than I've ever imagined. I've felt nauseous with worry over this for as long as I can remember. Probably 3 weeks at its worst. I'm terrified about getting an IV. Moreso about keeping one. Theres these things called picc lines and midlines that they really want to do to me but I cant accept. I only found out about them on Tuesday. I've cried alot since then. These lines start at the bend of your arm and thread to large veins, in the case of the picc right above the heart.

Doctors are now reluctantly saying that I should be able to get away with the peripheral, although it will have to be changed at least once. That scares me too but its doable. I wont have a panic attack. I just have to think about how Andrea got one and shes a very scared person usually. And how Justin had that and worse because he had a spinal tap.

All this waiting has been a mixed blessing. My body is suffering from the stress. They didn't have a bed for me for 2 days. Now I'm here but iv-less because I went for xray and bloodwork before it. I'm still quite nervous. I need to sleep and shower with it but still protect it. I won't be unplugged for 10 days. Mom and dad found out I'll be allowed to go shopping so theyll force it. I don't want to hurt my iv at any cost. Boredom I can deal with.

This can't be real. When people talk to me I can see it in their eyes. That difference. The feeling that washes over you when you talk to a disease. Someone with cancer. The "other" or maybe its just my imagination. They really are very nice here. Part of me is afraid to stop being scared because I need to keep squeezing pity out of them so I don't get forced into a picc or midline. This will be the longest 10 days of my life.

I'm going to have lots of visitors I know. And mom and dad everyday. But honestly, as always, its the people most unimportant that I want to hear from. People that almost couldve never known I was different. That don't see me at my worst. My coworkers. I miss them even more than I thought because they symbolize normalcy.

Alina called today. It stopped me in my tracks and broke my panic ever so briefly. I want to draw on that power. I just want to get through this so I can find a new way to fight. If I can last till I move out, well, then the pressures' all mine. I dont want to come back here.

Left in the Dust

I feel I'm constantly meeting new friends who are on the cusp of transplant and telling them excitedly "together we will extend our time.. we'll encourage eachother" only to find them leaving me on this side of transplant within months while I go back to standing alone. People who were much healthier than me plummet and list before me. I know I can't stay here forever, but I still feel that the traffic should not pass me as fast as it does.

At least it keeps me remembering reality though. Maybe that's the purpose it serves. Maybe also watching a load of people share their fears, and then express their happiness afterwards is meant to help me as well. As I head towards my goal-listing-time, I need all the help I can get. Something I've repeated alot in past blogs. I am a firm believer that everything happens for a reason, and that timing is everything. The timing one is tricky though, because I have to try and sit back and let my gut instinct of what I "should" do take over. I am very happy about my decision to see my neice/nephew born before I take on this journey. I'm also feeling a strong pull to get this going while the weather is nice... because it will ease the effort of driving to Toronto for physio, and also because the summer tends to leave me sicker by fall... I can't do that more than one more time before I'm in extreme serious danger.

I've pursued the anxiety "help" to the full extent now. i've been on the meds for long enough to feel their full results, and wipe out any side effects. I've found myself alot tireder, but hopefully getting out more will help that. I also think the meds are taking the edge off of my fears, which is wonderful. Unfortunately, I ran into a new anxiety snag yesterday when I discovered that having my dog on my lap while my oximeter was around my neck was a bad idea. I am now without one for at least a few days and I am realizing the full extent of how comforting it is to have it. I'll consider these few days a test of my strength.

I also saw the very busy anxiety doctor at my clinic hospital. He was super nice, but I didnt get any advice or help that I hadn't already thought up for myself. Just a suggestion to slowly increase the amount that I leave my comfort zone of home. Certainly not worth the drive to Toronto and back, but I'm happy I tried it out. I will be seeing him in clinic next time, which is much more efficient.

That's really it for now. I wish all my newly post-tx friends, and soon-to-be listed ones the best of luck and health.

Process

I can hardly believe its been 2 weeks since my last post, 6 since I was called with the transplant news, and that my sister is halfway through her pregnancy. All of a sudden, time can't go slow enough for me.. and its flying because I don't want it to.

I have moved forward with steps to cure my anxiety, if that's possible. I'm skeptical, because I have the most active mind of any I swear. I wish I could trade it away. I started some meds that were supposed to work immediately to suppress the anxiety. They did nothing in any way, negative or positive.. and then after 5 days of taking them I was called by my nurse who suggested we switch over to the "real" drugs (without even knowing these weren't working) because they take a month to work. I also have an appt with the anxiety doctor in just over a week, so it will be good to already be into the meds so that we can be efficient when we discuss my treatment.

After recently managing to avoid my husbands cold (woo hoo!), I started the new meds. They wean on, starting at a low dose and gradually increasing to the optimum dose. The first day I experienced strong, unrelenting headaches, nausea, lack of appetite and fatigue. I was frustrated and upset because I knew if this lasted any amount of time it would affect my physical health since I couldnt' even do physio or move off the couch.. and hadn't eaten in 24 hours. I was worried that I was trapped in this loop of mentally being destroyed in order to be physically okay. Thankfully, it eased up fairly quickly and I'm now left with morning nausea, fatigue, and still the loss of appetite... Sounds like a lot, but I can push through this somewhat and I am hopeful it will lessen still.

There's not a lot more to report. This issue is bigger than any other right now, and as spring approaches, I am hoping with everything that I can go back to normal and stay that way very very soon.