Sometimes, You Have to Cancel

I canceled my appointment yesterday. I just couldn't make it. Rheumatoid arthritis is extremely subject to the weather. I can tell whenever it's about to rain or snow because my joints get really stiff and achey. The slightest bit of precipitation can send me into a world of pain. Think Tin Man from The Wizard of Oz. 

Yesterday in Chicago, the weather gods decided to gift us with rain. It may be good for the environment but horrible for my ability to get out of bed. I was scheduled to go to the University of Chicago medical center for an appointment with an infectious disease specialist, but when I woke up I felt the pain and canceled. 

I feel like a failure. This week was my medical marathon - a non-stop merry-go-round of doctor appointments everyday this week. I told myself that if I could do this I could do anything; that progress was being made and that I was one step closer to getting back to my chosen home, New York City. And I couldn't. I couldn't make it. I couldn't bear the pain of getting out of bed; of riding into the city; the dance routine of getting me into a wheelchair; trying to sit up in the waiting room; biding my time until I can get back to my bed; which of course does not come without my inching out the backseat, walking to the stairs supported by two people, and a climb up a flight of stairs that I imagine to be not unlike scaling Mount Everest. 

It probably would have been a good idea to see her because of the fevers I've been having. Every once in a while I'll have a fever of 99-100 and above, the highest ever being 102.3. I know that's not normal but I've been brushing them off because:

• they don't happen very often
• when they do, I don't feel sick. I don't even feel warm
• they always go away in a few hours
• I'm not too keen on waiting in the hospital for a team of doctors to do countless tests only to later tell me they have no idea what's going on

Fevers are usually a sign of infection, but I've got 16 viles of blood taken for tests that prove nothing is infected. An infection would also call for a constant fever, and mine are sparse. Knowing my luck, she would have had the solution to all my problems; finally, a doctor with the answers I've been waiting for or just answers period. But I missed that chance because I let the illness win, or at least that's how it looked yesterday. I may be acting a tad melodramatic considering I scheduled another appointment for March 23rd, but that wasn't my appointment. My appointment was for March 9th, but I couldn't make it. And now I have to wait in the unknown - a medical purgatory - until I can see her two weeks from now.

It frustrates me because deep down, medical history aside, I don't feel like a sick person and truth be told, on those good days, I forget that I am. For a nanosecond, I am normal. Then I reach for something or turn to the side and it all comes racing back to me, making up for lost time. It hurts more than any arthritis pain could, when your actions can't match your thoughts.

In my mind, I feel like I can go or at least that I should be able to. When I wasn't able to, I didn't take it as "You need to rest, now. You won't need to rest, forever", which I should have. I took it as "Go back to bed, Joï. You're not like everyone else. You can't do what everyone else can".

Maybe that's why yesterday was such a hard blow, because after a good week I had to admit to myself that there is still a great deal or work to be done. I'm not out of the woods yet.

I put too much weight on these appointments, on tiny insignificant events that have no bearing on my capacity to persevere. They are check-ins - mile markers on my way to recovery - and should be regarded as nothing more. What's done is done. I canceled the appointment, I didn't go, and now I have to move on. But what must be said so that I can grow to accept it, is that I canceled it for a legitimate reason, because my body needed to rest and I should not be ashamed of that. I did what was necessary to give me strength for today. The only thing I can do now is live my life until the 23rd (and after, of course) and hear what she has to say then. My Medical Marathon Week is over, for the most part. I wish I could have completed it as planned, but unfailingly, shit will happen. There's always some week in the not-so-distant future. Or the week after.