Posts Tagged RA

The Quest for Knowledge

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.

Example:

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.

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Respecting The Journey

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.

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Woe is My Feet

No, these aren’t my feet. I wish they were. These feet look happy and pain free.

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.

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It’s Totally RAD (I’m weighing in on the RA vs. RAD debate)

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?

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