Topsy Turvy Tuesday

Ah, another 24 hour visit to club Saint Mary's behind me. I went in on Sunday afternoon after I received a phone all that my WBC (white blood count) was .7 or 700, they prefer I be at least around 4,000. With such a low WBC I am way more susceptible to picking up any little bug and also anything that might already be in my body deciding to kick up and I would have no way to fight it. So, as per usual transplant the goal is to keep the WBC low enough as to not want to reject my lungs but high enough to fight off infection. So, all my drugs are currently changed up, what I once was on is either stopped or halved. I was also given a drug to help boost my WBC, which I was told had side effects and after injection two I thought I was home free, alas I was not. I got up off the chair last night and my hips hurt, then my knees then my back and what a rotten night it was from there.

This morning as I went for my now daily blood draw I got to see a couple I have meet through transplant, Lynn (the transplanted) and her husband Charlie. Since I no longer do pulmonary rehab at the clinic I don't see them and today was the first time in probably six weeks, at least since before my abscess issue. It was so good to see them, and so good to have a conversation with someone who has experienced the same things, she to has dealt with low WBC and had the same side effects. She has had other issues, different then mine but again we all seem to have some weird differences post transplant. It's good to know someone that has the same ups and downs each day and thinks and hopes the same thing each day. That the one good day is the turning point and then waking up the next day only to feel like poo again and thinking will this ever get better. These meetings are almost better than support group because they are one on one, and in this case L and C, don't attend support group (which I only occasionally do), but I really enjoy their company.

I know someday you will all get tired of reading my ups and downs of transplant, and I hope that one day transplant stories will be 'on a side note' rather than the ramblings of my blog post. I have somethings that I am hoping to get posted on here soon that are transplant related, I will see how soon I can accomplish this.

Well, my back is starting to talk to me that I should either get up or lie down, I can't decide which but in any case it hurts and something is being called for.

I hope to do another painting today. Three last week, was pretty great. I did some drawings in the hospital, I woke up one morning and drew something in my head, later that day I put it on paper and I think it might be the inspiration for a future painting. This has really been taking off. Now if only I wouldn't balk every time I looked at the price of canvas frames. The other problem is I get overwhelmed when buying frames, because I look at the price, the size of the frame and say - can I paint something on there worthy of that frame price? Then I think, I can't just keep collecting my paintings, I need to sell them or something, so then there is that whole issue. Ugh, such problems, right? I mean I can paint, how cool is that and I will just continue to enjoy that I can do that - for now.

Happy Tuesday!

Fair Warning: Complaints Ahead

I have decided to rant today as usually I do pretty well staying positive with all that has gone on. I think I have done a good job of keeping things in perspective most days, I have had a few days of being crabby but I think today has finally risen all frustration, angst, anger, and resentment to the top, I am boiling. I feel this way because I feel miserable. I have had it with having to do, medical things, I am tired of this pain that constantly plagues my chest, my stomach that can only take small amounts of food before it feels so awful that the only thing I can do is lay down. I have lost weight five pounds, again and will likely have to use my mic-key tube again to get the calories back, which I really don't want to do, even though I have it for a reason. Seriously, sinus surgery was the last thing I wanted, and it feels like it set me back about a month.

I am still in constant pain/discomfort with my ribs and nothing seems to help, my brain is tired of trying to trick my body into feeling better. My best distraction all week has been watching Hot Tub Time Machine, and for anyone whose seen that movie knows it certainly isn't an award winner but it does distract, especially John Cusack, which I guess that would be the highlight of my week. We both get older and he still looks great.

How does God or the universe of whom ever think that I can keep dealing with these issues, my body is exhausted mentally and very much physically?  I know I have come a long way, I have gained muscle in my legs and that is huge, I am becoming much better at knitting after thinking I was going to drop that hobby like a bad habit almost as soon as I started it. I just don't know how to keep up with myself. I just really want to sleep and yet that is something I can't do all day because I need exercise to keep these new lungs going.

Every time I think CF was better than this my dad gently reminds me of where I was at before these new lungs, and he is right and then I try not to go down memory lane of the vent unit and my life at home before this all happened. I tried to watch White Christmas last night, my all time favorite Christmas film only to realize half way through that Rosemary Clooney was on the same vent unit as I was before she died, so I had to turn off the movie. Maybe next year it will all be behind me. I have always loved Christmas and our family being together, I love talking and laughing and having a good time together and this year will be different due to my immune supression, but I do understand and I know my siblings do as well plus they have new plans this year and I wish them happy travels.

So, I guess I have reached my limit and want to have a break for awhile...from myself and that is unlikely to happen. I just wish and pray that this chest discomfort would be gone when I wake up tomorrow so I can go back to functioning and do things that will bring me joy, like painting.

On breath at a time

I found myself having an x-ray again today. I have been to the clinic a lot lately, I suppose I should just get used to it. My stupid head cold has traveled it's kind self into my lungs and today gave me such pain, I was for sure it was a collapsed lung. Luckily, it was not. Instead I have a lung pulling on my diaphragm due to all the mucus trapped in my lower lobes. Exciting, eh? Problem is I just need get it out and frankly that isn't always easy.

I hate being in pain, it effects the whole body when one area is under attack. Tensing up in order to not feel the pain in one spot causes further pain in another. Why is that my pain always related to coughing or breathing - oh yeah I have CF. Duh. I am drained today, nothing more I can give, the couch and various soft objects to sit on are my only friend. I do not look forward to the morning and the first few minutes to hours of my day, it is an endless cycle of frustration.

I used to be a morning person and I am sad that I am not any more. I love the smell and sound of the earth as it awakes but now all I awaken to is lying there assessing every inch of my body. From my head down to my lungs, my hip and my legs. Like the tin main oiling all main points, I make sure that all points are working in proper order and when I find one thing out of whack, my whole day is turned upside down.

It is all these little things that I lose along the way that I hope I will regain, at least to some reasonable amount, after transplant. I would love to wake up, do my body assessment and say, gonna be a good day. Get up and get the day going. I realize this could be a long way off but I think it is a good goal to hope for.

Some days I wonder if I am a baby, like does my amount of hurt really qualify as that painful. The clinic has pain scales and I have never chosen  a 10. I hope I never do :-) I always figure there is more room for pain. And yet I am the one whose chest was sewing shut around a chest tube without being numb. Mind over matter, I was desperate at that time and was willing to tolerate anything just to get the job done. But then maybe I am not that strong. I don't think I could ever cut off my own arm to get out of a desperate situation, and then again maybe I would. I guess that is the thing about human nature, one never knows the extent of their willpower until they are forced in a situation that leaves no choice.

Have I ever thought about giving up on this whole journey, I would be lying if I said no. There are days where I don't know how much more I can take. This day was one of those days. But what exactly can I do about it, other than stop all the things that keep me alive. Frankly I think I am more scared of stopping all of it then dealing with each day as it comes.

I sit on my deck these nice days and think about my life but also absorb the beauty that is around me this day. If I have one clear second of the day when the breeze blows and the trees rustle, the birds sing, it is in that second that I know what life is all about.