Hey y’all! Happy Friday Eve! I hope everyone is doing well today! I’m kind of meh. After being in the car for long periods of time, I’m pretty wiped out for a day or two. It’s a bummer because I really enjoy road trips. It is what it is, though. It’s one reason that I am very glad I don’t do much haha If I was a busy person I don’t think I’d ever be rested.
I thought I would talk to you guys today about how having RA has affected my appearance. I’m sure y’all are thinking “how that could even be possible?” I sure never thought it could be possible, and yet here I am. I feel as though I don’t address autoimmune/chronic illnesses enough here, even though it’s part of what this blog is about. Autoimmune diseases and chronic illness are not easy topics of conversation, but they are important, nonetheless.
I was diagnosed in 2014 and immediately put on methotrexate, which, if you don’t know, is chemotherapy. The dosage for RA is lower than for treating cancer, but that doesn’t always mean one will be immune from the effects. Luckily, I was spared the worst of the side effects. It was also completely worthless for me. The next med my doctor tried was Arava, also known as leflunomide. This is where I experienced some ugly effects.
I had only been on it a few weeks when I noticed some heavier than usual hair fall. While that was happening, my blood pressure was also creeping up significantly. Within a few weeks, my hair was coming out by the handfuls in the shower. There wasn’t a time that I showered that I didn’t exit in tears. The first time it happened, I screamed for my husband. Not knowing what happened, he was there before I even finished screaming his name. I just stood there, holding out my hands and crying. Full disclosure, even writing about it, nearly three years later, is causing me to cry.
I had been blessed with such thick, curly hair. Looking back, I am so grateful that I had so much hair. Had my hair been any thinner, I think I would have had significant balding because of that medication. I was on it for roughly five months. Shocker, it didn’t have any effect on my RA either. After almost three years being off of it, my hair still hasn’t fully recovered. The crazy thing is, this med has to be scrubbed out of your system. Otherwise, you can experience side effects for up to TWO YEARS after stopping it. There’s an old-school cholesterol medication that removes it from your system pretty effectively. Within days, my blood pressure returned to normal. I wish my hair would.
Balding can be addressed. There are wigs and hair pieces that can be worn. My hair never got to that point, but it was close. The next topic isn’t so easily addressed, however. It’s something that happens to nearly everyone with RA, and that’s joint deformity. If you’ve ever come across someone with gnarled looking hands and/or crooked fingers, it’s likely they have RA. The joints become so swollen and disfigured, due to the ongoing damage, that fingers begin to twist and bend, often into very unnatural positions. Because of that swelling and the constant pressure it puts on the tendons and ligaments, they can no longer help to hold the fingers where they need to be (and toes, if there’s RA in those joints). The result is often a claw-like appearance to the hand. The fingers become unusable and the joints are basically frozen in those positions.
There are surgical options, but they aren’t pretty. No surgery is. This surgery is usually to fuse the joints. That will restore the fingers to a more natural position, but they are fused. There will be limited, if any, movement. Forever. My mom’s hands were terribly deformed. After my diagnosis, I was gutted every time I saw her hands. I was literally looking at my future, and it was terrifying. I can only imagine how she felt because it had actually happened to her. I was just anticipating what was going to happen. She was living it every day, not being able to open anything and dropping things constantly. Clearly, those are just the minor inconveniences.
Yikes, y’all … this took a bit of a dark turn. That wasn’t my intent, but it is the reality for me and the 1.5 million others in the US alone, who have to deal with this horrendous disease. Never in a million years did I think an arthritic condition could affect my appearance. Now that I know, I do what I can. I take mega amounts of biotin. With it being a B vitamin, whatever my body can’t use will get excreted quite readily. Please, always talk to your doctor about taking vitamins first, though. You never know how anything will interact with any medications you may take. I also try to not have my hair in tight ponytails or clips. Anything that pulls on the hair can weaken it at the root, often causing it to fall out. I have found, for me, keeping my hair shorter helps a lot. No idea why, but when it’s shorter I have less hair fall than when it’s long. Right now, it barely grazes my shoulders, and that seems to be a good length for keeping it in my head.
As far as the finger joints, there are exercises that you can do to keep the joints from getting too stiff. I’m on the fence as to whether they are effective or not. I guess I’ll know in ten years or so. Staying hydrated can also help keep the joints lubricated. Lubricated joints are less likely to lock up. Honestly, I’m not the best at drinking water. I try, but I often fall short.
So there ya have it, y’all. It’s not a fun topic, but it’s something that so many like me have to deal with every day. And it sucks, I’m not going even try to sugar coat that. I definitely don’t dwell on it though. I’m not a dweller. I can’t afford to be. I know there are other autoimmune diseases that can affect appearance, like lupus, but I don’t feel qualified to talk about those. If you have any questions, or you’re just curious about something, I’ll be more than happy to answer, or if you have anything to add to the conversation, please do! I’d love to hear your perspective!
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