For the first few years I was dealing with rheumatoid arthritis, its effects on my appearance – or, more to the point, the effects of my medication on my appearance – weren’t enjoyable, but I guess they were tolerable. I gained weight – thanks, prednisone – (which I hated) and ended up more chubby than I thought I’d ever be but, otherwise, I still pretty much looked like myself.
Then this past year, my disease process really turned fierce and my pred had to be increased and new meds had to be added with even nastier side effects.
Since two of my newer meds also cause significant weight gain (but they are meds I need to be able to walk so I can’t really stop taking them), I’ve found myself at a weight I NEVER thought I’d weigh. And, of course, I’ve had to deal with hair loss – and am now growing it all back out. Right now, I’d say it’s about half an inch long. Oh, and long term prednisone use causes striae, deep red marks across the abdomen, that don’t go away. And that’s just part of the picture.
I’ve also experience the steroid related bone loss and have broken bones in my feet that aren’t healing that often have me hobbling around.
And my disease itself has worsened so I frequentely have hips, knees, and spine acting up, also causing me to hobble around.
My balance is off sometimes so I’m a fall risk. . . Bringing sexy back.
I now have handicapped parking and usually get to drive the little carts around Target, like I’m 110 years old.
I try my best to remember that my worth is not in my appearance and all those other things I absolutely know to be true but, I’m still a woman, and some days I just feel gross. Like sit down and cry about it gross.
I also can’t do my own toes anymore – because my hands stink – and I can’t trust the nice ladies at the salon not to squeeze my feet too hard so pedicures are out and I really hate ugly, naked toes. My sweet family tried to help with them but a) they have stuff to do and b) dealing with my feet is no bueno. So even my toes are having an unattractive spell right now.
Today is just one of THOSE days.
But moping won’t do any good and it’s certainly not the answer to anything.
So, while there is nothing I can do about these physical changes, other than continue to follow my diet plan and take my vitamins for my hair, there are things I do to snap out of these funks:
- It’s time for a long hot epsom salt bath with a Dirty Hippie bath bomb and some fabulous tunage.
- I’ll be diffusing Valor all day and wearing Abudance everywhere.
- Lots of deep breathing.
- All of the Henry Herring hugs.
- Gratitude – Seriously, this is a biggie. I am still walking and doing the things I want to (even if I have really spread them out) and, most importantly, I’m still here. Some of my spoonie friends have not been so fortunate and it’s been heartbreaking. I don’t have to have hair to be present for my loved ones.
- Prayer – I need to pray like I need to breathe on days like this.
I don’t write all of this as a pity party at all. It’s just that I know I’m not alone in feeling this way. Autoimmune disease changes your whole life and I know other spoonies are fighting the same battles and probably having the same ugly days I am.
And I always want to be honest here. So others know they are not alone.
And that we will survive the ugly days too.
And we’ll keep on going.
Because as long as there is air in our lungs, we are here for a purpose – whether or not we have hair and no matter what size our pants are.
Be well, everybody.
Love and light. ❤️💙💜💛💚