This is probably my tenth attempt at writing a blog post for this week.  Since getting out of the hospital I’ve been trying to catch up on work that I missed all the while keeping up with treatments and exercise.  Getting out of the hospital feels like getting out of jail in a lot of ways, and it’s often hard to readapt to life outside the hospital walls.  And dealing with more medical problems on top of it, only makes it even harder.

About two weeks ago (I think, although it could be more like three) I started to get hives.  This happened one other time shortly after being discharged from the hospital and it lasted about four months.   They start coming out slowly usually while I sleep and each day they are worse and worse.  I dread looking in the mirror in the morning and seeing how much of my body they’ve taken over.  The last few days they have been worse than ever and I’m pretty sure they’ve slowly taken over my brain as well.  It’s not just the itching that is ruining me, it’s accompanied with terrible joint and bone pain that at times feels unbearable.  They’re so bad on the bottoms of my feet that I can barely walk, let alone do any kind of exercise.  Doing my vest feels like torture.  So while I know what I have to do to stay out of the hospital, the hives have made it impossible to do those things. 

I’ve seen every specialist and no one can give me any answers and no matter how many times I Google all my symptoms I’ve yet to self diagnose myself and find a cure.  The most interesting  suggestion I found was to put oven mitts on my hands to prevent myself from scratching.  Unfortunately, I only own one oven-mit, so that idea is useless.  Last time I dealt with hives I took round after round of steroids and got painful Benadryl shots only to have them come back again and again.  This time I’m accepting that it’s just another way that CF has manifested itself inside me and that all I can do is ride it out.  Or maybe it’s just an allergic reaction to the massive amounts of IV antibiotics I’m given when I’m in the hospital.  Yet another reason to work hard and stay out of that place. 

Overall I feel like I’m falling apart, which unfortunately is probably partially due to getting older with CF. I've often said that I feel old which is always met with some form of “pppsht you’re NOT old”.  And if the person is older than me then they usually act personally insulted.  I've felt old for a long time though.  When I was fifteen the average life expectancy for someone with CF was 30 and I remember very distinctly having what I thought was a "mid life crisis".  Although now I can't even remember what it was over.  I just feel old.  I’ll be 31 in a few weeks and so technically speaking I am an “older person" with CF and therefore there are new health things I am dealing with that I didn't even know about when I was younger.  

The average life expectancy for someone with CF is 37 (I think, although they've been changing it a lot lately).  The average life expectancy for someone without CF is 79.  Being 31 means I am technically 81% through my life (not that I believe this to be true, but just for the sake of the argument...)  If I was "normal" this would mean that at 31 I was only  38% through my life.  This is a HUGE difference.  If I was 81% through my normal life of 79, I would be almost 64.  This is about the age I feel lately, which makes sense.  Wait, does any of that make sense?  My math skills are sub-par on a good day- covered in hives and losing my mind, I’m not sure I should be trusted to count out change for the parking meter… Just believe me, I feel old. 

A few days ago I stopped by my parents to pick something up, no one was home and I saw that my dad had torn up the back porch and was re-doing it.  As soon as I saw the missing floor-boards and cob-webby soil that was a few feet under it I remembered the note.  When I was kid I wrote a note and put it in a zip lock bag and slid it between the floor boards of the porch, thinking that one day when someone else lived there (many, MANY years later) they would find it and read it.  In the letter I talked about my family and how much I loved our house, I even predicted that my brother Ross would (by now) be a professional basketball player, and that my brother Jackson would be a famous writer.  While Ross is 33 and thus a career in the NBA has passed him by, Jackson has many years left to reconnect with his writing and make at least one of my predictions come true.

It’s a long, two page letter that covers all kinds of things, from the date and temperature (90 degrees on Thursday July 2, 1995) to which rooms belonged to who.  One of the things that surprised me was that I talked about CF. Which at that point in my life I don’t remember ever thinking about it or it having much to do with my life.  But there it was, in the letter, evidence that I not only thought about CF but that it was also important enough to me to write about in a letter to the future.   I don’t write a lot about it but I say that I have this disease that has no cure and have to take lots of pills and do physical therapy, but then I say, “maybe now there is a cure.”

It felt strange reading this letter from myself as a child, from a time when I don’t remember CF being as much of a part of my life as it is now.  If I wrote a letter to the future today it would definitely include details of my life with CF. Sometimes it feels like my life revolves around CF. It’s not something I can ignore, and maybe I never have, maybe its always been at least in the back of my mind.  When I was younger I didn’t feel so anchored to my nebulizer and vest though.  I could be spontaneous and go away for a weekend, unplanned.  I could stay over at friends’ houses without worrying about my next treatment.  Now as I enter the older years with CF those days of spontaneity are gone, and I can’t help but miss them.  These days my life is very planned out, it has to be.  My vest and nebulizer are my anchor and I have no choice but to plan my life around them.  They may be heavy but they keep me alive and for better or worse, grounded. 

I was talking to my parents last night about the letter and my dad told me he had decided to put it back in a bag and back under the porch.  I can’t help but wonder who the next person to read that letter will be and if by then there will be a cure for CF.  If it’s only been another 15 or so years and they haven’t found one yet, I can only hope that Google has at least given me some answers about these hives.  Or maybe by then I will have invested in another oven mitt.   For now, I’ll continue to ride it out and hope they disappear as mysteriously as they showed up.