This has been a physically challenging year for me. My feet HAVE failed me now, and along with disc issues in my lower back, the only position that is truly comfortable (i.e. minimal pain) is laying down. Even then my feet throb sometimes so I have to get up and stretch. I was talking to a very wise and kind friend last week who suggested I look at how I am managing my energy. She suggested - gasp - that I might NOT have to go through the entire work day banging around on concrete with basically broken and inflamed feet and sore legs, thereby, possibly, letting me hold on to enough energy and brain cells to have a life when I get home. On too many days this year I've had to get off my feet too soon after getting home, and "carrying" constant pain around is plain exhausting. Having no reserve adds to the domestic chaos in which I live, too. In the discussion with my friend, the idea of a - gulp - wheelchair, for work and any other time I have to walk more than the dogs can handle, came up. I won't lie, I cried. Just a bit, then she began pointing out all the ways it might help me catch a break from the constant pain and focus energy on other things.
As anyone with RA can tell you, the first research factoid you find online after diagnosis is that 50% of patients end up not being able to work in 5 years. The next is that you will end up in a wheelchair. The next fact, that I have been forced to question, is that due to the new Wonder Drugs (called Biologics), this rarely happens anymore. I've been optimistic despite "burning through" all the biologics on the market. I'm still working, loving what I do, and walking. Despite the fact that every day is filled with miserable pain. Will be celebrating the 17th year of internal combustion this August.
Imagine that feeling when you've dropped something heavy on your foot. Now imagine dropping it on both feet, and then having the pain not fade away. Ouchies. The brain learns to use distraction as a pain management tool, but it is exhausting. I've reached a point where I am just so, so tired of carrying all this pain around I need to do something. My good friend got me thinking. maybe she is right?
I want to be a better teacher, I want to be a more productive artist. I want to spend less time prone and more time living. As I might have written before, my dear Dad had something that was labeled "migratory arthritis" (which is not a "thing") and had multiple lower back issues, as did my Mom. I watched him become unable to take more than a few steps without pain and gradually became someone who laid down and watched tv all the time. I hate tv and can't do this!
So, at my appointment with my rheumy yesterday I got another healthy wallop of solumedrol iv and had The Discussion about Mobility Aids. My doctor thought it was reasonable to consider at this point, and gave me some pointers as to how to go about it. She thought a scooter or electric chair would be best, even if it isn't covered by insurance (which it won't be because I do not have an upper spinal injury.) A manual chair might be covered, but she said it will take six or more months and several tries with the insurance as they do not like to authorize them. She said also with RA my wrists, hands, and shoulders are vulnerable to damage.
I am trying to see this as not a last-ditch effort, as in "I'm IN a wheelchair now." I am going to try to look at it as though it might just help me do more than struggle with pain. I've often thought of going to the museum but said "No way" when looking down at my feet. Or to Hampton. Or or or. During the day, having it on hand might save my feet steps and reduce the abuse they take all day long. I am afraid of losing conditioning due to using one, but do not see me using it all the time or so often that this will happen. Just distance walking, I think, or blocks of back-to-back classes at school that keep me on my feet for hours.
So, the "invisible disability" (which is very visible to me every day before I put on my shoes) may now become a little bit more visible. It is scary, and for some reason embarrassing, as I feel a little bit like I am "giving up" in not letting this freaking disease control my life. But, it is also a little relieving, as it has been a tough year. Yes, as we get older we all get aches and pains, but this is much more than that, and I have to learn new ways of dealing with it.
Some art blog, huh? It is what's on the mind, and has to be dealt with. Now, on to a busy day thanks to the solumedrol. Bless you, steroids, bless you. Maybe they will kick in and all of this will be nonsense by tomorrow morning. A girl can dream!