I don't know how to say Thank you. I feel I need to do something. This past week I've had to urge to just go out and LIVE. It doesn't matter what I am doing as long as I am doing something. Sadly I must admit I spent an hour last night trying to remember how to crochet lol this may sound boring, but guess what? I remembered how to do it and accomplished my goal :)
I've spent so long not being able to do anything the feeling of being able to go bowling, walk down the street, dance, go to the movies , WALK TO A CAR. I don't know how to describe this to anyone that hasn't gone through it. I go to exercise and it's so much easier than before I just keep going even when it starts to hurt and my muscles start to ache.
I am joining the transplant dragon boat team next year, I'd join this year but it's just way to early. Complications can still happen, this is something I remembered this morning when I woke up at 5:30am with aching knees again, I'm almost afraid of telling this to someone because I know its arthritis and its related to CF. I also know if I say anything the doctors are just going to send me to an rheumatlogist. I'm glad there starting to learn more about this werid aspect of cf. Appartently it attacks the big joints, I believe this because my knees KILL when I get an "attack". Also the paper I was reading mentioned that there could be a sudden on-set of back pain, this is what I have been dealing with since transplant. The team thought it was my kidneys but NOPE my kidneys are fantastic, which leads me to think this is what may be causing it. I also woke up with a fever. Not the 37.5 degree fever that the transplant team has drilled into me is BAD and if it happens I have to call because it could mean rejection. No I woke up feeling hot and it was 35 , no biggie normal...now and hour later its 36. 3...soo going up..but still not bad. Also cf arthritis appartently makes you have a fever. OHH cf how I hate you.
On the upside I've memorized all my new medication. All 22+ bottles of it lol.
Ok the point of this blog was not to complain or ramble about health yet here I am doing it again.
I keep meaning to make a new blog post but I think I'm going to end up crying If I try to express how Im actually feeling and I dont no if I want everyone seeing that yet lol.
Postive- I have a new boyfriend :) and I'm so happy about it I dont no what to say. If you told me out of transplant in a month I'd be biking 5km in rehab and spending time with a amazing guy i would have probably cursed and you and told you to leave me alone lol It seems like forever ago that everything happened, yet I still have stitches scars healing and muscle mass building back up. But it seems like forever, or like some weird horrible dream I just woke up from.
My lungs feel like mine now. I know that sounds like an odd pharse but when I first woke up they didn't, they literally felt like someone else's, I felt not like myself. I felt wrong to be honest. I don't know if every transplant patient goes through this but I was well aware that those organs were not mine and to begin with I wasn't ok with it. I thought oh my god have I broken some rule , some rule your not suppose to break, at one point I told my mom i thought I had 2 souls or that I didnt have a soul anymore. This clearly had alot to do with the medication, at the same time I was being truthful, I new someone had died and here I was "stealing" away apart of them. I'm glad this feeling has gone away. It was scary. Though i'll be honest we dont understand everything. Im convinced my donor was a man and maybe 35, dont ask me why...I just woke up thinking that. I also think he might have been mexican. Again no clue why.. i just woke up thinking it. Maybe Im wrong , maybe at some point Ill find out it was a 16 year old girl..but I dont think so...no my food preferances havent changed like some people say and I dont have the urge to go do something that I was completely against before, but somethings are different. My body isnt my own anymore and the team keeps saying that over and over, "this is ur new body we dont no how its going to react to anything", scary thought lol.
allison, i had knee and hip pain for months after transplant. it was awful. some days i could barely walk. finally at the 6 month mark the pain disappeared and i started running!
ReplyDeleteit might not be arthritis. i thought for sure i had gotten arthritis too. it was such bad joint pain. I have talked to another person who also expierenced the same pain.
some days it was worse if my tac level was high. but some days it was awful and my tac level was completel fine...so odd. but sometimes it was so bad in my knees i could not even bend them to put my pants on, or bend them to get in to bed.
sometimes it was so bad in my hips i could not get my legs into the car. a lot my physio therapist said could also have been because my legs were SO weak causing the joint pain because i was going on and on as if my legs were 'normal' which they were not yet.
here's to hoping it's the same thing and disappears after awhile!