To RA patients like myself, drugs like Enbrel can feel like a miracle. Yes, we don’t want to rely on drugs, and, yes, there are side effects, and, sure, there are nasty warning labels. But the trade-off is life less limited by RA. Hope for a future that doesn’t include disability.
But that happily ever after is not the full story. Around 15-20% of Rheumatoid Arthritis patients have exhausted all the treatment options. The medications either result in too many side effects or become ineffective. For these patients, I imagine it feels like there’s not a lot of hope left.
A new drug just went through Phase 3 clinical trials that might offer these patients hope. Read more about it here.
Last night I went to a talk on Design Thinking. This is marketing/business jargon for approaching product design from a user’s point of view. The speaker encouraged everyone to go out and talk to their end-users so that they could design with empathy.
As an example, she talked about a new pill bottle that her company helped design. (Not sure what the product is, otherwise I’d post it.)
Her colleague went out and interviewed some older patients in their homes. Noticing an older woman’s severely arthritic hands, he asked her whether she had any trouble taking her medications at home. She replied that she had no problems at all.
He asked her to walk her through her medication routine, so she led him to her kitchen and showed him the electric meat slicer she used to open her pill bottles.
Yes, you read that right. She used this
to open these
But the thing is, from her perspective – her “new normal” – she was doing just fine.
The product designer disagreed and apparently designed pill bottles that were easier to open.
This is a great little anecdote to encourage product designers to actually meet their intended product users, but that’s not really what I got out of it. I found this woman pretty damn inspiring. Here she is, with severe arthritis, and she’s making it work with the tools she has. She’s not whining. From her point of view, she’s just fine.
Design Thinking & RA:
This morning I was woken up by my right wrist, which was so stiff and painful I couldn’t move it. So I drag myself out of bed, take a really long, hot shower, and wait for my wrist to feel a bit better. No luck.
I dig out my wrist brace and attempt to brush my hair/teeth and apply make-up left-handed. Fun!
Then I go to work and try to operate my mouse with my left hand.
Now, I’m not as bad-ass as the woman in the story above. If anyone asked me if I was having trouble today, I’m pretty sure I would be a flood of complaints. But with diseases like RA, you’re forced to roll with the punches and get creative in how to compensate.
I’m happy to say that I went for a jog in the sun this afternoon and though still painful, my wrist is now doing a bit better (I’m typing this after all!).
Design Thinking as applied to life with RA:
I live in a city that embraces naturopaths, acupuncture and supplements. Anytime I tell anyone I have Rheumatoid Arthritis, they immediately follow with diet or supplement advice.
Fish oil cures that, right? MSM eliminates symptoms. Add turmeric!
This advice is not only coming from the uneducated. I’ve read books and studies recommending some supplements, including fish oil, from reputable sources.
When I was first diagnosed, I heeded this advice. It got to a point where I was taking a handful of pills morning and night.
Finally, my body had enough, which it communicated with a gag reflex I started getting just by seeing the vitamins in my hand. I’m currently listening to my body and taking just one supplement each day – alternating calcium/vitamin D with a hair, skin and nails formula (does wonders for my methotrexate-induced hair loss and weak nails!).
Last night, I finally got around to watching Frontline’s Supplements and Safety documentary.
It’s an important watch for anyone who adds supplements to their daily regimen.
I won’t pretend to be a doctor and offer medical advice. Some people get great results from supplements. Just please add them to your diet with caution and awareness that the industry is not regulated!
I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.
There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.
I feel like the pieces are still settling, four years later.
I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.
I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.
I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.
And then there’s kids…
I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.
When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me. With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.
The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.
Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.
Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.
Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?
To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.
I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.
In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?
First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
As a cat owner who uses the occasional muscle-relief lotion to combat arthritis pain, I was upset to read this article:
To summarize, the lotions that we use for our aches and pains, are fatal for our kitties. So if you use the lotion, don’t let your kitties lick you. If you use the lotion and then a blanket, make sure you wash the blanket after use before putting it in the same room as your kitty.
We all know those little purr-balls can help us feel better, so lets keep them safe!