Rheumatoid Arthritis Articles

I used to love running. Running has been my link to sanity in every difficult moment of my life. I ran as a child, as a teen and as an adult. I ran short and long distances and I’ve always loved running in the hills. I love running downhill and taking flight almost as much as I love running up hill and feeling fire in my lungs.

When I can’t shut my brain off I go for a run and it fixes everything. It’s been my meditation, my therapy and my joy.

With he onset of Rheumatoid Arthritis I went from running a few miles a day to not being able to walk upstairs in my house almost overnight. In addition to the toll it took on my body there was a huge price to pay emotionally. Without being able to move well I was antsy, grumpy and sad all at once. I’d watch people run past me and stare wistfully.

In the last few months a combination of medicines has allowed me to exercise again. I can take long walks and hikes and still feel okay and I can even run a few miles without aches.

I’ve worked up to a four mile run. Rheumatologists will tell RA patients that you should exercise only to the point where you don’t feel joint soreness an hour or a day afterward. What’s been difficult for me as a former athlete is that my old mindset was to exercise to the point of pain. Not extreme pain, but in order to grow muscle strength you need to push it and feel something, a strain, fatigue… light pain.

Exercising when you’re an RA patient means stopping before there is pain and it’s a wholly unsatisfying experience.

Today I did a flat four miles of interval training. I would run at a slow but steady pace for 3 minutes and then walk for one. My hips didn’t hurt, my ankles and toes felt fine an hour later and even this evening. I never lost my wind. I never felt a burning in my chest and I never lost track of time.

My new normal isn’t leaving me happy.

I’ve signed up to run a half marathon in April and it looks like I’ll need to readjust my goals. I won’t be running. I’ll be walking because it’s the only way that I’ll be able to make the distance without injuring my joints.

I should be incredibly grateful that I have the ability to do this long walk. I’m not there yet. Maybe this race (though I’ll hardly be competing with anyone) will be a milestone that can help the disappointment dissipate.

I wish I was running. I’m trying to not look at walking as a defeat.

My toes hurt every morning. They don’t hurt a little bit, they hurt like spikes have been driven into them.

They’re just toes, one might say.

Every morning when I lay in bed and open my eyes I feel fine. I swing sideways on the bed and stand up. Still fine. I take one step forward and now my toes are involved, it’s like childbirth. There’s a pain that starts in the joints and radiates up my spine ending in that horrible place between your shoulder blades. This is coupled with the sour taste of fear and pain that inevitably floods my mouth.

It’s been happening for a few weeks now and it’s sort of one of those aches that are both insult and injury. If I get some shoes on quickly it hurts a lot less, and I’m very happy that most of my morning stiffness is gone, but the searing pain in the toes piss me off every morning.

This morning was colder than most and as I hobbled to the bathroom trying to keep my toes up I thought of Lisa and her foot. That fucking foot with the cancer that killed her. So now I’m in my closet crying before the kids wake up, because I had waited to cry and today seems to be the day. Today is also the day I need to film two videos so it only makes sense that I should start with red and puffy eyes.

That foot, that foot that took Lisa and prevented her from saving more babies and changing our world. That foot that made her hurt for years.

My toes can go fuck themselves, because they made me miss Lisa and her one good foot. 

I have a friend with Rheumatoid Arthritis. We were diagnosed the same month. She’s afraid to take drugs. I’m afraid of not having them.

If you’re newly diagnosed with RA please look into the disease modifying drugs. Most of the day I don’t hurt. It’s unlikely that I’ll need a joint replaced, and the fatigue is almost completely gone.

I was terrified and I know you are too. It’s okay to be afraid and to keep moving forward. Don’t miss your chance to be well.

People ask me about my Rheumatoid Arthritis. Most days I smile and say something to make them feel better, because really that’s why they’re asking.

I went from 60 to zero in a matter of days. I went from running, loping really, long distances to needing naps twice daily and being unable to uncurl my hands. I was fit and trim, and then inactivity and medicines left me bloated and queasy. The uncontrollable parts of it all makes me uncomfortable, and I sense it does the same for the people around me.

I’m almost back to being me. I’m a little stiff in the mornings, and I can’t exercise for more than two hours. I’d like to play a proper tennis match, but if I stop exercise after 90 minutes I seldom ache in my joints, when I pass 90 minutes my hands, hips, knees and ankles ache for 24 hours. I’m confident that this will change and I will return to proper tennis.

The Simponi saved my life. It didn’t cure me of Rheumatoid Arthritis, yet, but the results have been so fabulous that if this is as good as it gets I’m really happy. I’m still taking hydroxychloroquine and we may add back the methotrexeate or some other chemo, but for now the two medicines seem to be knocking things out nicely.

I exercise every day. I exercise partly because I’m a person that needs to move and it makes me happy, and partly because it’s an important part of living with Arthritis. I don’t take my motion for granted as I once did, and I’ve added yoga back into the mix. I also spend at least 30 minutes every afternoon floating in the pool. The absence of gravity is wonderful.

When it was clear that I had RA I felt my world crashing in on me. I thought it was the end of everything. Now it’s just a bump in the road.

I have Rheumatoid Arthritis and I’m not fighting it. I’ve posted updates for y’all to read and to see at various times, and I’ve worked hard to assemble a team of physicians that can help me get into remission.

I’m not in remission and I’m not fighting this thing.

I’m in pretty good shape these days. I come dangerously close to actually making a fist with my right hand and yesterday and today I was able to run in the canyons without needing narcotics afterward. That is a huge improvement. I haven’t opened a bottle of Advil in several weeks, my energy level is mostly high, and steroids aren’t a part of my life any longer.

Still, I have symptoms and discomfort. I have swelling and some numbness and tingling. If it never progresses past this point this is Arthritis I can live with. Sadly, it’s improbable that I won’t see some progression unless the medicines get this into remission.

You see the medicines are the ones that need to fight the arthritis, not me.

I know everyone loves to fight their diseases and Fuck Cancer is a wonderful sentiment. Recently I was with my friend Becky who had been treated for cancer and she explained to me how much she disliked people talking about her “fight”. She talked about the people who had cancer but died, is that because they didn’t fight hard enough? Were they not strong enough? What if your cancer is just deady like the pancreatic cancer that killed my Grandmother? Was she not up for a fight?

My children have a mother with RA, which is an autoimmune disorder closely linked to leukemia. Of their four blood grandparents three have, or have been treated for, blood cancers. Should I raise my children to be fighters just in case? Please understand that my single greatest fear is that Jane or Alexander will have one of these disorders. It’s a fear so overwhelming that it wakes me up at night, I feel cold like I’m dead and like cancer is just sitting on my chest like a ghost from a cartoon.

I’m not a physician. I’m not a scientist or a researcher. I’m a 41 year old woman with a debilitating diagnosis and an overwhelming desire to see her children remain healthy. I’m not fighting arthritis. I’m living with it, and I plan on living nicely. If my illness is to progress I wouldn’t want to be made to feel like it’s because I didn’t fight hard enough.

This morning the news I got was 60% good. After posting about the problems with getting my prescription now that CVS Caremark is administering our prescription coverage I got some really great advice from my readers.

I started with a very long phone call to my State Insurance Commissioner. During the phone call they detailed for me the process of filing a complaint, which begins with contacting the plan administrator. The plan administrator was extraordinarily kind. So much so that when I detailed the series of events I ended up crying. It was the first time anyone had been remotely sympathetic to me.

The plan administrator called me back promptly on Friday and left a message letting me know she had an update, but I wasn’t home all day Friday so it wasn’t until this morning that I was able to return the phone call.

The Plan will reimburse me 60%. I will get approximately $1,200 back, and the other $800 or so dollars will be mine to pay. I will continue to use the mail order pharmacy or be required to pay cash (which is not really an option).

I’m not sure if I should be happy with this. $800 is a lot of money to pay, but $1,200 is a lot of money to be reimbursed. I’ve spent nearly 20 hours on this, and I’m not convinced that 20 more hours would get me the $800 that I feel is due to me.

What I do know is that insurance isn’t designed with health in mind. If it were then physicians would be able to prescribe patients the best drug for their disease and patients would have immediate and unfetterd access to the drugs that can arrest their diseases. Rheumatoid Arthritis is not the common cold. One third of RA patients end up on disability within a few years of diagnosis. That number is a number that has been steadily dropping due to the discovery and manufacture of biologics like Simponi (the one I take), Enbrel, Humira and Orencia. These are not inexpensive medications, but they are far more economical than visits to specialists for pain relief and (sometimes permanent) disability.

No one can tell me that our current system makes fiscal sense.

My readers (bless you all) have been so kind and helpful, emails have detailed for me how to work within the system. Until last August I never understood that a system existed, and I worry terribly for people who would have to wade through telephone trees and piles of paperwork all the while feeling ill and trying to keep their jobs. It’s simply unteneable.

Again, I’m not sure if this is where it ends for me, or if I take the next (rather exhausting) step and bring civil action.

I have been in contact with the mail order pharmacy and I was left speechless when the operator (pharmacy tech possibly?) was unable to pronounce simple words. After I listed the drugs that I am allergic to I waited for him to ask me what prescriptions I’m currently taking. The question didn’t come. Someone other than CVS will have to protect me from the possibility of a drug interaction, a real pharmacist perhaps.

I’m sure I’ll be okay because I have an amazing local pharmacist and a two of the most talented and devoted physicians a patient could hope for, but it will be in spite of CVS’ mail order pharmacy, and not because of it.