In addition to my other little fears associated with this job that I can totally conquer with some willpower, a major concern has arisen - my physical health. Rarely do I discuss this in depth much, but it's my blog and I figured I can write whatever I think is relevant. And this is certainly relevant, as its taken up hours of tears and discussions this weekend.
As some of you may know, I have rheumatoid arthritis, and was diagnosed in 2008. Under medication, my pain level is minimal, if present at all. For the past 5 weeks, however, my right foot has been incredibly painful (about a 7 on a 1-10 level of pain, 10 being the highest) causing me to walk with a limp when walking moderate distances. My hip and fingers have also been unusually tight and my whole body feels exhausted. To best describe the feeling of arthritis, think about how you may feel when you wake up. You just need a good stretch. But what if you stretch and stretch and the tightness
doesn't go away all day?
That's my life, most days, in almost every joint of my body. Recently, its more like you're are trying to stretch your legs and want to push yourself just a little bit further. But it's tight and it hurts. And you try and stretch more, but eventually
there's a point that you cant hold it any longer and you release. That point is my constant recently. In almost every joint. Fingers, knees, toes, ankles, hips, shoulders, wrists.
Some back story for anyone who doesn't know: I was diagnosed with arthritis my sophomore year of college. I was sitting in a class one day when my hand completely stopped working, mid note taking. I just couldn't write the next letter. I will never forget the day, where I was sitting, what class I was in. Sitting at my desk, tears rolled down my cheeks and the honestly, the only things I could think about was that I would be in a RA in 4 weeks and wouldn't be able to use my scissors to cut the bulletin boards and I wouldn't be able to help my kids with their art projects in 15 years. Fortunately, my fingers started working again, but I walked out of the classroom in tears on the phone with my mother. After lots and lots of blood work every single week, x-rays, and the whole work up, I was diagnosed with arthritis, brought on by a mysterious virus I had contracted a few weeks earlier. For the record, I know who got me sick with the same virus that
didn't give
them this stupid disease, but I certainly
don't blame them for getting me sick. I was the foolish one who said, "its okay that you're sick, please, sleep in my bed." Now, this isn't normally the way rheumatoid arthritis (RA) works, but the symptoms of this virus mimic the symptoms of RA and since they had/still have no idea what happened to me, the specialists are calling it arthritis. After being diagnosed, before the
meds kicked in 2 months later, I spent a full month in bed. Thank you to my dedicated friends for celebrating New Years 2008 at my bedside. I did get permission to ride the special van to class and have a note taking assistant, though I never used either because I
didn't want to admit any disability. I don't normally tell new people about my RA, unless it's relevant, like I'm taking a car instead of walking a short(ish) distance. Other times, especially with close friends, I just make it into a joke, because it's easier to laugh about being an 80 year old, than acknowledging the reality that is now mine.
Since all the treatments, the medications handle the physical pain quite well. There's days that are worse than others, but certainly, I could do just about everything I wanted to. Some days I totally forget about it. The only thing I didn't do was apply to be an O-Leader because walking a lot and sleeping very little, leads to sickness. I'm sure I would have been a great O-Leader but since my virus messes with my auto-immune system, when I get a little bit sick, just a tiny stuffy nose or sore throat, I am in big big trouble. I could easily be sick for up to a month. It's lots of orange juice, sleep, and preemptive medication unless I want to be on steroids for a couple of weeks. And that's no good for anything, except to say hey, I couldn't play Major League Baseball! (Different steroids, I know, but it's funny.) I don't anticipate getting sick on the job, as usually I get sick in December or later, and haven't missed more than a day of school with it so far. I wouldn't say I'm a fighter, but I certainly am stubborn!
As for life right now, it sucks. I feel like I am 80 years old. I used to wonder why old people walked so slow. It's because it hurts and the thought of moving any faster is merely a dream. I'm far too young to have to give up my life and I'm a little bit bitter. It's sort of
bizarre that I have to consider how far away will we have to park at a football game, will I be able to walk? What dress shoes will give the most support? Will I even be able to walk around the mall today? If I had to run, I
don't even know that I would be able to. Standing still hurts, sitting in a car a long time without stretching hurts and laying in bed hurts. I'm not asking to run the Boston Marathon here! I try really hard not to think about it, denial is much easier than facing it. But in all truth, I wake up in the morning and my
first thought is "please
don't let me be paralyzed." (Morning stiffness is a classic symptom of RA, as the joints haven't moved for 8 hours or so.) I remember waking up that bed ridden month, every joint in my body frozen. My mom would come in to prop my 19 year old self up and walk me down the hallway. When I think about the future of this disease, it almost always brings me to tears. The thought of potentially being in a wheel chair in my 40s or having hip replacements scares me to death. I worry that I will miss out on my youth and abilities that I do have now because one day I know that I will not be able to type much without the pain being unbearable and my fingers physically locking up and freezing. I worry that my foot will never be pain free again and that I will never be able to walk around a campus without pain, never mind chase my kids around the playground or use the treadmill. I pray to God that new medicines and high tech surgeries will come out before I need them, but all I can do now is live life to the fullest that I can.
In looking at the next 13 weeks, a big part of me is immensely terrified that I won't be able to fully enjoy the cities I am in. Who wants to limp around San Francisco? I'll bring a lot of Advil and some ace bandages, but if the pain gets to be too much, I could be seeing a lot of the inside of my hotel rooms. For now, I'm staying positive. I have friends who went through major surgeries, chemo, and scarier traumas, my illness just stops me from moving quickly. I still get to enjoy the word! And I'll be able to enjoy the cities more now than I will in 40 years, so enjoy them I will. Perhaps naive, but I'm secretly hoping that I will be pain free when I wake up tomorrow morning. Like the virus will just be tired of hanging out with me and it will reach its expiration date. It's unlikely, but since they don't really know what this virus really is, no one really knows what it's doing. I'm off to the doctors this week, but I only have insurance for so long, so there's going to be some major medical bills in the future.....
Sorry to write such a depressing post, but it's not all
nerf guns and free pizza!
