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This is really hard for me to explain. I’ve quit doing many things that I can’t do any more like wash dishes, knit, or paint. I’ve modified the things I do and focused on the positive. So, even I hardly believe it when things like opening my car door or making a bed are really hard. Can I tell you that in public I usually use the handicapped toilet since it’s easier for my knees if it’s not as low? This reminds me of many comments on the blog asking, “Who would fake this?” Yes. Who would pretend their knees are bad alone in a bathroom trying to stand? I think of thousands of rheum patients I’ve connected with, I may have only suspected exaggeration a couple of times.
Today, I thought about how unfair this disease is to the mind.
Roo went to a birthday party at a bowling alley and I had something like an out-of-body experience. I kept experiencing disbelief – maybe because the setting was unfamiliar. My hands don’t look very Rheumatoid-ish, so even I keep thinking they should still work the same.
Titusville is has many vacant lots due to the termination of the Space Shuttle program. We pulled into one of them where the K-mart once was. We drove down to the bowling alley and suddenly the parking lot was jammed. Even the two handicapped spaces were taken, so I circled around and parked around the empty edges. I actually thought to myself, “You will walk fine and you’ve been sitting all day. So you shouldn’t need handicapped parking anyway.”
It was either crowded because the food is great or just because (we know) there are not many places to go around there. Hopefully both, I thought.
Roo had to stand next to the car while I decided how I was going to carry my stuff inside. In the packed bowling alley, I paused, “Roo, look around. Find your friend’s parents and say hello.”
Kids were running passed me. When they brushed against my bag, I literally worried that I’d be knocked down. Needing to put down my computer and camera, I scanned the large bowling alley, restaurant, and bar for a chair. Two types of bar stools. So evil to my knees I’d rather stand. Some sofas at far away lanes.
A few parents were in chairs; there must be an extra chair somewhere… Finally, I saw two spare chairs stacked and laid my stuff on a bar nearby. As I’m sure you guessed, I determined to pick up the top chair to bring it over to where Roo’s party was. I did. I plainly struggled, but I did.
The party went fine and Roo had a great first time bowling. (Score says “Jose.”) I mostly sat, typing a little. The fried mushrooms were really good.
I don’t know. It’s unfair that you can’t “see” the disability or pain of this disease. But visible changes are unfair too. I think my friend Trey got it right, “RA fights by prison rules.”
Please take our short poll on patient experiences with Rheumatoid disease – click here. It takes only 2-3 minutes, but you have to do it all at once. It’s programmed to only let you have one entry. This opportunity has concluded.
- Invisible Illness Awareness Video
- You’re Not Lost and Michael Bublé Video
- Not a Real RA Patient
- “You Look Fine” – a Wall of Confusion Surrounding Rheumatoid Disease