...for the bone marrow blues.
Irony. Alanis Morrissette had it all wrong, as we all know.
As our friends at American Heritage Dictionary, definition 2a declare: Irony is "incongruity between what might be expected and what actually occurs."
I went to JHU expecting to be sucked into the bone marrow transplantation vortex, only to be told that, as sick as I may be, I just ain't sick enough for their tastes. How do you like that?!! Doctors telling you to F Off Home because, medically speaking, you are right as rain compared with all of the other patients they see.
It sounds bad, but it's really good. Hence the 2a Irony.
I left JHU feeling happier than I've felt in a long time, most specifically because the doctor said the following thing:
"There is no treatment for your condition, no drug that will fix it, no medication that will alleviate it. The only cure is a bone marrow transplant that you can't get right now."
Sounds horrifying, right? But it made me smile. I instantly felt relieved of the burden of all the multiple drugs I've been on, wondering what I did to make them not work, feeling like a loser for being no match for their side effects, willingly riding the rollercoaster of "maybe this is the one that will make it all okay" and then being depressed and angry when it turns out to not be the one that makes it all okay.
I guess what I'm saying is that there is a certain joy and relief and contentment in the knowledge that there is nothing that is going to make it okay. Because then you stop looking for the silver bullet and stop getting suckerpunched with reality on a rolling 4-6 month basis. You just accept that this is how it is, and this is how you're going to have to roll. It's not a lack of hope or faith, it's simply a golden opportunity to redirect my energies toward things that are more important and more likely to keep me mentally and emotionally (if not also physically) healthy in the short- and long-term.
One such thing is my group of amazing friends. You certainly learn who your friends are when you have a chronic illness. I am lucky to have a perfect mix of all the kinds you need: the ones who just call you up and say, "you've been avoiding me and I want to know what is going on with your health because we're here for you even though you don't want to be 'a burden';" the ones who email you to check in but let you decide how much you want to say; and the ones who never bring it up, knowing that you will say something when or if you ever feel like it. The latter group are also key because it's easy to "become" the disease in the eyes of people who love you, and sometimes (most times!) you just want to have an entire conversation with another human being that doesn't reference your health, your feelings or your fears about same.
The other amazing thing about good friends is that they are a forgiving bunch. They cut you slack when you do avoid them for fear of having to once again talk about stuff, they cut you slack when you sometimes ONLY call them when something has gone so wrong that you know you'd better get out in front of the friend/family news cycle, they cut you slack when you exhibit annoying or sometimes uncool behaviors caused by whatever latest hellacious drug cocktail you are taking. I've been off the hellacious med for a couple of weeks now, and I can already feel myself returning to normal (or at least as "normal" as I ever was!). But those were some bad old days, lemme tell you. For instance, the drug packed 12 pounds on me, gave me horrible acne (both of which precipitated much complaining and weeping and wailing on my part to friends who I'm sure were so over me), and which gave me mood swings ranging quite ridiculously from depression to anxiety to anger--and all about nothing in particular.
I would cry at almost anything that upset me, like the time when I had to park three blocks away from a building I was visiting, only to walk past an empty space about 40 yards from the building. I literally had to breathe deeply and stare at a fixed point on the horizon to avoid bursting into tears about how horrible my life was that I was so stupid that I couldn't even competently find a suitable parking spot. I'm embarrassed to even write this, but less embarrassed than I felt 30 seconds after originally feeling like crying when I was like, "what in the hell just happened to me there?! How bizarre was THAT?!"
In addition to crying I would also get mad at inanimate objects, something I have always heavily derided the males in my family for doing, ie, "why are you mad at the broken TV?! That is so stupid. It's a TV! It's not TRYING to piss you off!" Famous last words. In the 5 months I was on The Eeee-Viiilll Medication, I found myself enraged by no less than the following items that I KNOW developed a higher level of consciousness for the sole purpose of ruining my day:
One kitchen stepstool
One sticking drawer holding Wiggles DVDs
Two bathroom faucets that could not manage to stay clean
One newfangled can opener that did not come with instructions for The Enraged Medicated masses
One Shoppers Food Warehouse shopping cart with the universally-understood bum wheel
Yep. Those were the bad old days when I had hope that a medication would work. Now, I just get to be the real, recognizable, somewhat slim, non-zitty, non-Roid Raging Me.
Now my friends will just have to deal with all of my ORIGINAL annoying and uncool qualities.
In short, thank god for friends (and family).