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 firstname.lastname@example.org 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.”
I have several tattoos, all applied during my misspent youth and prior to the RA. I had considered getting another one of my mother’s favorite flowers after she passed. My rheumatologist warned me that those of us with compromised immune systems due to Humira and similar drugs should be extremely cautious. 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. Bossy me. Sorry. Just wanted to share.
I love your blog, Wren, just largely lurk.
I’m SO glad you piped up, C! You know, I knew that about tats, but it didn’t occur to me to mention it. Infections are so easy to get while on all DMARDs, but especially with Humira and other biologics. SO glad you brought it up, I’m going to amend the post.
And hey, glad to meet you! Come back anytime and say hi. 😀
Your experience with humira is very similar to mine. It didn’t kick out the pain but it did take a bit of the edge off. I did find it seemed to wear the off a few days before the next shot. Switching to enbrel made a big difference.
No tattoo for me. I have enough needles in my life. Really, I have just always been afraid I would get one and then a few years later be tired of it. Once it’s there it’s there.
You know, Mary, that’s exactly why I’ve never gotten a tattoo, myself: my “likes” are too changeable. I figure I’d get some design I really loved, then five years later (or maybe less!), I’d wish I’d never had it done. And yes, there’s no going back unless you’re very wealthy–and then only if the tattoo isn’t very large. So I’d end up this very old woman with a unicorn on my tush, being terribly embarrassed if I had to drop my drawers for a shot. Oh, dear.
I hope Enbrel works like for me like it does for you. Taking these powerful and potentially dangerous drugs aren’t worth it if you can get more pain relief from cannabis. And if they don’t touch the fatigue, etc., well… nope.
Love hearing from you! I hope you’re well! 🙂
Glad you got an appointment that quickly. Bring your Humira. The doctor may be able to give it to someone who’s waiting for funding approval.
Hi, Lene! The VA is incredibly regulated, and I really doubt my rheumatologist will take my last dose off my hands, even if personally, he’d really like to. I’ll take it along with me just in case, anyway, though. I’d like to be wrong about that. 😉
Hi Wren: Oh my, I hate it when I let something important slip, but I can certainly understand how it could happen with the happy arrival of your relatives. At least you were able to get rescheduled fairly quickly! It’s great to know that the Humira seems to be having some effect. That provides hope that a slightly different TNF blocker might be more effective. Sending hugs.
Hi, Carla! In retrospect: HOW COULD YOU FORGET SOMETHING THAT IMPORTANT?!? In reality: Well, I just did. Sigh. But yes, it’s just a two-week delay. In RA-drug time, that’s nothing. 😉
I was thinking the same thing about the Humira vs Enbrel. There’s hope on the horizon, yet!
I got a tattoo years ago, long before my RA arrived. I have always wanted another. I was thinking of one along the lines of my artistic life – I never considered one for RA. I’m not sure I would – I feel that RA is already tattooed on my body with its stiffness and swollen joints. Glad to hear you can still get back to see the doctor and hoping that you will feel better soon. Hugs.
I think a tat that reflects your love for writing and language would be great, JG. My daughter is an artist (a much more talented one than I), and she has many beautiful tattoos that she’s designed herself. After I got over my instinctive Mom-reaction (OMG what have you done to your beautiful skin!), I liked them. And I respect why she wanted to have them. Much like you, they reflect her passion as an artist.
I can also see your point about the RA tattoo. While I don’t think I’ll ever get a tattoo, period, if I do, it probably won’t have anything to do with RA. I feel I can advocate without inking it into my skin permanently. But that’s just me. 🙂
Thanks for stopping by! I always love your comments, and I hope you’re feeling well in spite of the rain you’ve had up in your neck of the woods. Shoo it down this way, willya?
It’s good that you got to share some happy family time with your cousin, Wren, even at the expense of a missed appt. The visit sounds like it was good “medicine” for you. Maybe Humira is finally living up to its claims and you get one more chance to check this out. As to the tats, I would never get one. For one: needles! And two: infection. Not that it would automatically happen, but those of us immunosuppressed do have to be careful. Besides, as J. says, I’m already marked by RA.
Okay- so- I am your anomaly- of course. I have 8 tattoos. Got the first one at 31 the last one 3 years ago so in all stages of pre and during RA. Quite honestly- they are not a biggie. Except my first (because it’s so small) and my last (because it’s on my forearm and I wanted to watch) I fell asleep during every one. The pain, compared to what we live with every day, is negligible. The buzz of the machine it white noise. I am considering a 9th already. I know what I want- I just don’t know where. Perhaps the 10th will be RA/Fibro/DD/RLD related. We will have to see. 🙂
As for missing your appointment- I have missed several recently. The fog sets in and if it’s not part of my usual routine- it doesn’t exist.
You are always my very favorite anomaly, Jules! Hi! As I mentioned to JG Chayko above, my daughter (she’s 32) has a number of tattoos, some of them quite large. I always loved her art, but I’ll admit it took me some time to warm up to the fact she’d be wearing it on her body for the rest of her life. Her tats are really pretty, and she still loves them, though, and a couple are over 10 years old now. Nothin’ wrong with ’em that I can see, other than the infection risk.
And, if you’re careful about that, then why not? My daughter wants me to get one to follow along the scar that was left when I had surgery on my wrist 10 years ago. It’s shaped like a long, wide W, and she thinks I should have a bee, or bird, or even a hedgehog (I love those little critters) at the top of the W, and a trail of little dashes or dots along the scar, which is about five inches long. I’m still thinking about it…
Great to hear from you, friend! Come back soon! 😀