RA Just Keeps Taking and Taking and Taking!
Last updated: October 2023
I think we need to come up with a new slogan for rheumatoid arthritis and chronic illness, and the way I’m feeling lately makes me think that the perfect one would be: "Rheumatoid arthritis – the disease that never stops... taking." Because that’s what RA and chronic illness in general does – it takes and takes and takes from you until you have nothing left and have to find a new thing for it to take from you. Hmm, can you tell that it’s been a tough week?
RA has taken many things from me
As many of you know, I have had RA a long time. Long enough to see America Online go Offline. Long enough to see the Huffington Post no longer be owned by a Huffington. Long enough to see the clothes I wore in high school come back around and be fashionable again (thanks, Mom, for making me throw away those dingy grunge plaid shirts which are now considered "vintage" and sell for a fortune). So, it’s been a while, you might say, and in that while, this disease and the secondary conditions it causes (or "comorbidities," for the scientific nomenclature buffs among you) has taken many, many, things from me.
At this point the stolen career count is up to 5, the destroyed relationship count includes 3 girlfriends and a wife, and the amount of money and time I have had sucked away from me by this wretched illness I can’t even begin to quantify. It starts somewhere around a bajillion. Yet, despite all this loss, I always was able to brush it off, eventually, and move on to the next project/relationship/career while not dwelling on the cost too much. Except for this last one — this one I’m finding hard to let go.
I recently had a bout with cancer — lymphoma, to be specific — and it was my most serious comorbidity yet. I beat it, for now at least, thankfully, and escaped relatively unscathed... or so I thought. It seems the chemo, which I needed ultimately because of my RA, left me one final up-yours, and it has gutted me.
Giving myself time to grieve
I just want to interject here that this disease saddles us with loss on such a regular basis that we could give a Wall Street banker from 2008 a run for their money. To fight the potential eternal and unending feelings of despair, what I do is I give myself 2 days to grieve whatever it is and then move on. Forty-eight hours to cry, yell, be angry at strangers, shirk off all my responsibilities, curse God, and decry the whole world and all its vagaries before I start whatever comes next.
It’s a good system, and it works well because you have to grieve a loss. It’s a natural part of the process, and if you don’t do it, you won’t be able to properly move on — but you also can’t let it suck you down and destroy the rest of your month/year/life. So it’s 2 days, that’s it, but this time I can’t get the feeling of loss out from the back of my mind. Cancer, and ultimately RA, took my hair, and there’s no way to get it back.
Grieving illness-related hair loss
Yup. It’s gone for good. I figured with today’s miracle medical technology, they could find a way to bring it back with transplants or stem cells or unicorn saliva from Monte Carlo or whatever magic they use on movie stars, so I made the appointment to see what could be done. Well, as it turns out, what we can do for me is... nothing. I am not a candidate for replacement, stem cells, or even that unicorn thing which apparently "doesn’t really exist, and I’m not sure where you read about it, and you should probably leave my office now." So that’s that; I’m stuck with the little I have left.
Have you noticed RA has impacted your hair?
Now I know some of you are probably saying, "This is so dumb and you’re being stupid and vain," and you may be right, person who is reading this with a luscious head of hair, but here’s the thing. Think about your own life and illness and think about the things you’ve lost. Wasn’t there one time where you said, "This far and no further," or, "I can live without everything but this! Really?! It’s not fair!" Well, this was my red line, and now that I’ve crossed it, I’m finding it hard to get on with life, the universe, and everything. Silly? Maybe. Important in the grand scheme? Probably not. Still angry, though? Steaming.
Another loss handed to me by RA
This was my line in the sand, folks, and I always told myself that someday I’d be able to remedy it, so it wasn’t a big deal. Throughout all my other losses – which include several actual, real, made-of-bone joints in my body, I always said, "Well, at least I can fix my hair one day."
I used it as a carrot in the carrot-and-stick scenario that I would employ to motivate myself through the worst this chronic illness had to offer. I’d say, "Well, at least you can fix your hair one day.” Well, turns out I wasn’t chasing an actual carrot, just the illusion of one. Sure, there’s things like toupees or wigs but, well, you all know what you think when you don’t see a man with one because they are soooo not noticeable... he said facetiously.
So, here I am with another loss handed to me by my RA, and this one smarts. There’s nothing to be done, short of transplanting my entire head, and I feel like I might have a difficult time finding a donor. Will I get over it? Sure. Will it take a while? This one probably will. Talk soon.
Have you struggled to afford your RA medications?