Posts Tagged RAD
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
I have to admit, it’s been a rough couple weeks. Stress in my personal life and friends’ lives, as well as some important projects at work and working out a bit too hard, has taken its toll on my body.
Symptoms that I left behind months ago seem to be rearing their ugly heads. The bottom of my feet ache and swell to the point that no shoes make them happy. My feet hurt even doing small things, like pushing down the gas pedal. I feel very, very fortunate that this doesn’t prevent me from running and working out. For whatever reason, I lace on the tennis shoes and feel OK for that hour or so. It’s worth it physically and mentally, even if I might pay a little afterward.
My left wrist has visible nodules that seem to be getting worse, not better. Just the fact that I can see the effect on RA can send me into a mental tailspin. So I’ve been trying very hard to replace negative thoughts with positive, neutral or grateful ones.
Me: Oh my god, look at my wrist. Pretty soon RA will take over my body and I’ll be totally deformed.
My reply to myself (no, I’m not schizophrenic): Just because you have a couple Rheumatoid Nodules doesn’t mean your RA is worse. They’re not hurting you, they’re barely noticeable and they won’t be there forever.
Me: Shut up and let me wallow.
OK, so clearly I have a little work to do.
In my attempt to change my thought patterns and gain perspective, I’ve ordered two books off Amazon. I’ll post reviews here when I’m done.
- A Resilient Life: Learning to thrive, not just survive with rheumatoid arthritis by Kat Elton
Too often, people faced with a disease such as rheumatoid arthritis hear words like, “disabling,” “progressive,” or “tragic.” “Tragic” may be what people are saying but the real tragedy is that these often repeated words do nothing but harm to those who hear them. They completely ignore a very real truth: physical issues can absolutely lead to positive transformation, action, challenge, inner strength, deep courage, and compassion. This unique book is written by someone who knows her subject well. Kat Elton, an occupational therapist and woman who’s had rheumatoid arthritis since age two, knows that people with RA don’t need false hope or to be told what to do. What they do need is to be led toward believing in themselves and improving their reality no matter what it is. Part practical guide, part workbook, part memoir, this book demonstrates that although there is no magic bullet or cure for rheumatoid arthritis, there is a way to live well with this disease.
- The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed by M.E.A. McNeil
Rheumatoid arthritis (RA), a disease characterized by inflammation of the joints, is one of the most disabling forms of arthritis and affects over two million people in the United States. Without proper treatment it can lead to long-term joint damage, chronic pain, loss of function, and disability. From the first moment of her diagnosis, author M.E.A. McNeil took charge and educated herself on every aspect of her condition. Now, as a “patient-expert,” she guides those newly diagnosed step-by-step through their first year with RA. McNeil provides crucial information about the nature of the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. The First Year—Rheumatoid Arthritis is an essential resource for everyone who wants to be an informed, active participant in the management of their condition.
I was getting tips on how to prevent pain and stress in the wrists when doing yoga with RA, and my instructor said something so kind, so perfect, so wise, and so simple, I had to share.
“I respect your journey,” she said. “I know you may not see it that way now. You may see it as a pain in the ass and that is fine, but you are on a journey and I respect your path, strength and courage.”
Wow. Powerful words. In about ten seconds she had the reaction to the news of my RA that I realized I was seeking. Acknowledgment that it is a difficult card to have been dealt and it’s not my fault to have it. Permission to react any way I want. Support. Confidence that the circumstances I’m in now will ever evolve. And finally, encouragement of my power to deal with this.
The last couple days were rough. Once again, my feet were hurting and I was consumed by thoughts of “oh my God, the drugs aren’t working” and “it’s because I’m down to only four methotrexate per week (and Enbrel).” Or, maybe it was just the normal ebbs and flows of life with RA. But of course my mind doesn’t like that thought either. That thought means it might be like this forever.
So with my feet hurting, two days ago I thought wisely that I should not wear flipflops, which let my feet swell, but aren’t supportive for the painful pad of the foot. Of course heels were out of the question and tennis shoes would just throw my outfit too far off (I’ll sacrifice a little bit of style, but I just can’t go that far). I opted instead for my expensive, less-than-flattering, mary-jane-style shoes with nearly-orthopedic inserts, lots of support, and an adjustable velcro strap to counter swelling.
My feet walked me to work relatively happy. By lunchtime, they were so swollen, no amount of loosening that little velcro strap was going to help. I spent the next few hours barefoot (probably didn’t thrill my coworkers). I forced my feet into the shoes and found myself a ride home – no way was I gonna walk if I could help it.
I ended my night with my aching, painful, and now blistered feet in a cold foot bath. It helped a little.
Cue the next day. Guess what, I woke up with hurting feet. They were back to that point where rising up on my toes, even a little, is pretty excruciating. Flipflops were out, my expensive RAD shoes were out, tennis shoes were…out (sorry! I’m just not ready to bring tennis shoes into my work outfits yet!). I felt pretty good about another option: boots with no heel and inserts that would give my feet padding and allow them to swell. Yes, the weather was unseasonably hot for June, but I could sport boots with a dress and make the look work. The great style/pain compromise settled, I happily set out on my short walk to work.
Immediate pain, which of course pained me in another way: it was a painful reminder of how badly my feet hurt in these shoes in my pre-diagnosis days. Only a few hours later, I could feel my feet swell to the edges of the boots. That was another rest my feet kinda night.
And then there’s today. I wake up expecting pain, but I feel fine. Overjoyed, I lace up my tennies (to workout, not to go to work!) and go for a run. It’s a little shaky, but I’m feeling so much better, it’s powerful. My feet are feeling good, so I opt for my greek sandals with plenty of padding on the sole. Mostly pain free all day.
Don’t get me wrong, I’m not complaining since today is a great day for my feet, but the pain rollercoaster of RA is physically and mentally exhausting. There’s just no predicting when a flare will hit or how bad it will be. And there’s no science to why it gets better, at least no science that I’ve figured out.
As my rheumy says, you’ll drive yourself crazy wondering what causes what. I guess it’s best to just take care of myself as well as I can – plenty of sleep, minimize stress, keep at my high fruit, veggie and omega-3, no dairy and gluten diet, and appreciate the good days. At least, that’s what I’m doing today.
I thought you all were more than due for an explanation as to why I prefer Rheumatoid Autoimmune Disease to Rheumatoid Arthritis. Everyone with RA can empathize with that awkward moment when you first tell people about your disease. The reactions for me generally vary from “You’re too young to have arthritis.” to “Arthritis isn’t that big of a deal.” to “What’s that?”.
Even the people that are sensitive to the disease or maybe have even heard of it have misconceptions. They don’t know that the disease is systemic, as in effecting more than just the joints. If they do have a concept of RA, they usually immediately jump to the images they’ve seen of deformed hands. “You have that!? But you look fine.”
I don’t need everyone to understand my disease. And I don’t need their sympathy. But I’m a 29-year-old woman and I hate the stigma of the word ‘arthritis.’ Maybe it’s superficial and hyper-sensitive of me. Maybe it’s because I’m still fresh to the world of RA. Whatever it is, I much prefer Rheumatoid Autoimmune Disease.
You say Rheumatoid Arthritis, and people’s minds turn off. “Arthritis. I know what that is. My grandma has it.” You say Rheumatoid Autoimmune Disease and people just might hear you out and take you more seriously.
Also, I think that RAD just generally encompasses the disease that I am experiencing better. It’s not just the joints. On many bad days, the joints are the least of my concerns. It’s the fatigue and insomnia and even GI problems. It’s the full systemic issues of RA that make it so complex and difficult to deal with.
So there you go. I know they’re just words and, ask anyone, I normally hate arguing semantics, but this one has pushed a button.
Oh, and RAD just reminds me of neon and the ’80s, and that makes me smile. What disease name can do that?