This is going to be a catch-all post. Please be patient. First:
No, I didn’t get a tattoo.
I rather like them, but I’ve never had the nerve to get one myself. Recently, though, the nice folks at Healthline, who named RheumaBlog one of the Best Rheumatoid Arthritis Blogs for 2014, pointed out to me that getting inked with a rheumatoid disease-related design can be a powerful reminder that you’re stronger than your condition. It is, they pointed out, a great way to raise awareness about it, too. To illustrate that point, Healthline has set up a slide-show at their website that shows off some pretty cool tats. You can take a look at it here.
It turns out that there are lots of people who cope with rheumatoid disease who’ve had the courage to get a tattoo–and they got designs that help them advocate for themselves and the disease. Others have RD-related designs tattooed on various body parts to lift their own spirits and remind them of their own awesome strength and courage in coping with such a difficult, painful, and often disabling disease.
Well, I’d never thought about tattoos quite like that, before. What a great idea! So, here’s the deal: Healthline is putting together a second slideshow about rheumatoid disease-related tattoos. If you have one, and you’d like to see it included in the new slideshow, just do this:
- Send a clear photo of your tattoo (at least 285×285 in .jpg or .png format) to email@example.com with the subject line “My RA tattoo” by April 3, 2015.
- In 90 words or less, describe the inspiration behind your tattoo.
- Please identify if you’d like your name published or not.
Healthline will then publish them in the new slideshow on their website, and share with their Facebook community.
I tend to be a little scatterbrained sometimes. OK, a lot scatterbrained. Take a creative, artistic, right-brained woman, add a little rheumatoid disease brain-fog, and yep, look up “scatterbrained” in the dictionary and you’ll find me. But really, I outdid myself this time.
I had an appointment scheduled with my rheumatologist last Saturday morning. It was important; I’d been looking forward to it for months. My doc and I planned to discuss starting me on a different biologic, probably Enbrel, because Humira just hasn’t stepped up to the job after a full half-year. My rheuma-dragon has become increasingly aggressive over the last several months. Sometimes I think he’s laughing at me. And of course, intending to show him who’s boss, I wanted to get this switch-over going as soon as possible.
And then my cousin, who I rarely get to see because she lives in Idaho, came with her husband to visit last Friday. We enjoyed a great day with them, catching up, talking about everything and then some more, sharing a tasty dinner and some nice wine and lots of laughter. They spent the night.
The next morning, we were all enjoying a cozy, mid-morning breakfast, complete with bacon, toast, and eggs, laughing and talking, when Mom suddenly said, “Didn’t you have an appointment with the doctor this morning?”
Aww, man! I’d missed my 8:20 a.m. rheumatology appointment, the one I’d waited and waited for! I tried to call them, but it’s a specialty Saturday clinic, and the VA’s operators are, for all intents and purposes, off work for the weekend. And I knew from long experience that my rheumatologist’s Saturday clinic is packed; he sees about 25 patients every Saturday, and many of them travel considerable distances to see him. The chances that he might be able to squeeze me in were pretty slim–those appointments are like gold. So I had to just suck it up and wait until Monday. I rescheduled my appointment for the Saturday after next, the soonest they had an opening.
If there’s a tiny silver lining to this doofus mishap, it’s that I’ll be able to take another dose of Humira before the next appointment. Somehow I ended up with two extra doses, and I was feeling bad that they’d go to waste. I’d talked to the VA pharmacy about bringing them back, but apparently the law says they can’t take them. Nor can any regular pharmacy, once they’ve been shipped out. That seems a terrible, shameful waste to me, considering how incredibly expensive these miraculous drugs are. But at least now, I’ll only waste one dose instead of two.
Here’s the other reason I’m sorta glad I can take another dose. I noticed about four days before I took the last one, two weeks ago tomorrow, that I was hurting more than usual. These days, I pretty much hurt all the time–my hands and feet, mostly–and my energy levels are pretty pathetic. But it seemed that as the injection day got close, all of that intensified.
I hadn’t noticed Humira having any effect before that, though. So it made me wonder if perhaps it is actually doing something. Not enough, but something. And, just like last time, for the last three days my pain and fatigue have increased at least two-fold. After I inject tomorrow, I’ll pay closer attention to how I feel during the days that follow. By taking this last dose before I see my rheumatologist, maybe I can tell him that it was slightly effective and not a total waste of good medicine and time. After taking it for six months, it would be nice to have something good to share about it.
So. This wasn’t a very exciting post. But I did get to tell you about Healthline and their search for RD tattoos. I hope you’ll get in touch with them before April 3 if you have one you’d like to share with the world.
NOTE: Catesanseraser, a really smart and very kind reader, quickly commented below to remind us to be careful about getting tattoos if we’re taking drugs to treat RA: “… (T)hose of us with compromised immune systems due to Humira and similar drugs should be extremely cautious [about getting tattooed]. Infections are easy for us to get and hard to shake if we get them. Anyone who is taking a biologic should be certain to discuss it with their doctor first. Some docs recommend prophylactic antibiotics. Know your artistic and make sure they understand that you’re immune compromised before getting a tattoo.”