The whys of chronic illness

I went to see my rheumatologist today (arthritis doc). This appointment always begins with the scale and ends with a blood draw. Neither are a pleasant experience.

There is something about going to the doctor and using their scale. It is always wrong! I mean, they clearly have not calibrated the system to ignore the shoes, the pants, the belt, the bra, the shirt and my full tummy after just finishing breakfast and coffee. Oh, wait, that would be normal daytime weight, not me standing on my scale each morning after I pee, before I take my morning meds, most of the time, just in my undies or naked, before hopping into the shower. No wonder their scale added an extra 5 pounds! I like mine better.

But, the good news is that compared to my weight on the chart from 6 weeks ago, I have lost 2 pounds. I was fully clothed at that weigh-in.

Before meeting with the doctor, I filled out the same survey that I complete every time I go in. I opted to be part of this study about 4 years ago. It is a survey that helps you reminisce about the fun times you've had with RA, such as your injections (yes, they still hurt), your ability to open a jar or lift a 5 lb bag of flour (sometimes, but that is what husbands are for), or your ability to walk up stairs (not well, but that is because I have two left feet and both have had surgery), and so on and so forth. It does actually serve as a nice tool to think through how you've been feeling for the last few months. In the grand scheme of this disease, I've actually been doing pretty good. The medicines have been working pretty well. I didn't hurt in Austin, remember?

But I haven't been amazing, which is where I want to be. I don't want to hurt. I don't want bad days. I don't want stiff fingers, knees, toes, elbows and feet. I don't want to put two needles into my body each week. I don't want to take steroids. I want to be normal, whatever normal is.

So my conversation with the doc turned to my exercise plan. My water aerobics, elliptical, walking, moderate strength training, and stationary bike got a seal of doc approval. The mountain bike got frowned on. My doctor is a cyclist (but he's a roadie, not that there is anything wrong with roadies, but he's a roadie), so he gets why I want to be on a bike. His concern is the stress that is placed on joints when going up steep mountains, through rock gardens, or chattering down the mountain only serves to irritate my joints. And, he's right. After a ride, I typically have a swollen knee, elbow or wrist. Or all 6. But I take this in stride. He asked me to refrain from single track riding and just do easy climbs like the 3% railroad grade at Waterton Canyon (but not the rock garden at the top).

This really upset me. Like, really upset me. I've been on the verge of tears most of the day. I've had a couple of crying pity parties for myself. Single track and downhill biking is what I have fun at. Easy grade trails are boring and don't challenge me. I want the challenge of a good bike ride. I want the exhilaration of getting to the top and doing my internal celebratory cheer or my mental pat on the back when I make it through a rock garden unscathed. I want to have fun on my bike! I want this disease to go away!

The doctor's parting words (besides refilling my script for medrol) were, "but do what you have to do." So I'm going with that. I'm going to keep riding my bike. I'll rub some more voltaren gel on my nasty joints when they hurt.

I am quite thankful that my hands still look normal, rather than like this drawing. You can do a google image search if you are really curious what the advanced disease looks like. It can get pretty gnarly. The quick rundown of RA: there is no really "agreed" on cause. There is no cure, just remission and treating the symptoms. I've been in remission once for maybe 6 months - that was about 4 1/2 years ago. The main accepted cause is that your immune system went haywire and attacks the synovial fluid in your body and joints. You have synovial fluid around all of your joints and as part of your tendon sheath. (When you crack your joints, it is the synovial fluid displacing.) So, when the immune system attacks the synovial fluid, the body does what it is supposed to do, and that is to send in more synovial fluid to protect the joint. Hence the reason you get these really swollen, hot spots of bad joints. This becomes a vicious cycle. Also, too much fluid begins to break down the cartilage and pits it, creating malformed joints (like the picture). Not pleasant in the least. The best way I can describe what it feels like is when you get a bad goose egg from hitting your head or banging your leg. Plus add a fever to it. And sometimes so much swelling that you get some fluid leakage from the joint that breaks through the skin. The humira and remicade (previous drug) works by going and blocking your immune system (technically, it kills off your TNF proteins) so that it doesn't attack your joints. Yes, this does make you more susceptible to getting sick. I find I don't get sick too much, but when I get sick, I'm sick.

So I'm not sure why I have been quite as depressed about my doctor visit, as I have been doing better and he was happy with my exam. I think it was the fact that I was being told to not do something on account of this disease. I have already given up so much and made enough changes, sacrificed for this disease that it hurt and stung that I was being told to give up yet another happy thing. Well, screw it, I'm still going to bike. Pity party is over (after a hug from my husband).