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Life with RA: Lemons Lemons Everywhere

We have been home for 75 days. The kids are slowly being robbed of their school and summertime experiences, the economy takes my breath away, cities are ablaze, and mercifully I have not awoken from sleep at 2am dreaming that I’m choking on a ventilator for… three nights. For the one-too-many’th time we’re watching the police kill a black man on video. Slowly this time, up close this time. We ooze tension, we try to find moments of normalcy, we try to find bright spots and enjoy them for all we are worth. I am struggling with finding the joys, and appreciate and acknowledge that my friends and neighbors are too. I choose my words carefully. No one is well right now, no one has a right to be.

I have fatigue, both physical and mental. I’m drained texting with friends who won’t believe in science. I’m physically drained because stress and rheumatoid arthritis are an unholy duo. Some days I clean the house and listen to murder podcasts, they are less upsetting than the news. One cannot hide from the news every day, however, a day here and there is both prudent and healing.

I’m having a hard time getting the medicine I need. Delivery drivers are not on their usual routes and my last attempt to get my medicine resulted in three shipments coming days late. As it’s refrigerated and a three month supply retails at approximately $21,000 Caremark is out more than $60,000, and I wish I could say I care. I feel badly for the delivery drivers. They are doing their best, they have become our caretakers.

Simponi Golimumab TNF inhibitor costs between $4,965 and $7,248 in the United States

We have so many lemons.

I’m complaining to my rheumatologist about this and wondering if I’m the only person with this experience on repeat. I feel alone and I’m convinced that Goliath really did kick David’s ass, that navigating this disease and the roadblocks insurers have set up is a failure waiting to happen. My doctor assures me other patients are having the same experience, that I am not alone. He then suggests I consider changing to an infusion, they are bi-monthly and my office visit can occur during the infusion. We just might be making lemonade.

You see, I really don’t feel like someone with a disease most days. I’ve adjusted to my normal, which is that I lay in bed where I stretch and wiggle for a few minutes in the mornings, and then I put on ugg boots and treat my feet gingerly. I find that with warm toes and stretched joints my mornings can look like everyone else’s, just ten minutes or so slower. I take my main medicine every 28 days. By the 23rd day ten minutes has turned into 12 and by the 27th day 12 has turned into 20. Like a frog in water I don’t notice I’m scalding.

Injection days and rheumatologist’s visits days are the only ones where I really feel like a sick person. I want to say that I engage in self-pity those days, but that wouldn’t be true. There’s a mourning process for what could have been, and I won’t diminish that by calling it self-pity. My life is different, and I’m not going to pretend like that difference is a good one.

And then there was lemonade.

The very next day I got an email from Healthline. They’re adding a new app for rheumatology patients. Specifically for people with rheumatoid arthritis. People like me. People who won’t think I’m whiny when a visit to a specialist leaves me feeling defeated. People who will understand that a three-mile run is the new half-marathon. People like me who want to bop folks over the head when they recommend colloidal silver and say that they understand rheumatoid arthritis because they have a bad knee from high school hoops.

They can’t understand. It’s not about the joints. My people understand.

So I’ve downloaded the app for both iPhone and for Android, played with it a bit and I I’m looking forward to a robust community there. There are endless small ways that RA affects my life, and the fixes are so often simple. For instance, the Apple trackpad can give a user tennis elbow without a joy of tennis unless the settings are changed to tap to click. It’s lifechanging even for people without RA, but what a dreary existence if this is what you’re discussing at the dinner table.

I’m trying to share a little lemonade.

I won’t ignore what’s happening Minneapolis and all over America. I can’t put my head in the sand and pretend like losing at least 100,000 Americans to a virus is some sort of public health success. I refuse to ignore the news even as I attempt to sleep through the night.

I need to take care of my body, this vessel that supports me. I cannot find anything anecdotal about Simponi vs Simponi Aria. Have you taken one or the other? I’ve been using Simponi with great success since 2011 and I’m wondering if any of you have switched to the infusion. If you have was it painful? How long does it typically take? Any suggestions for making it more pleasant? And, most importantly, does it work better? I know it lasts longer. I also know that anecdotes are not a substitute for evidence-based medicine, but still I want to know what people have experienced.

Download the RA Healthline App with me.

This isn’t the time to be talking about healthcare on worldwide social media. No one is focused, there’s no meaningful way to break through the noise and find your people. With today’s healthcare and social issues I really need to connect with my people. People who understand the unique challenges of this life changing disease. I’ll be spending significant time with the app, and I’ll be following up in a few weeks to report back about my own experiences with it.

RA Healthline App has groups including lifestyle

I joined most of the groups (no one cares what I think of alternative therapies).

I think one of the highlights of the app is that we are matched with other users. I’m curious to see if this will change the way people share information.

I’m looking forward to growing with RA Healthline. If you download the app we can chat there too. I’d be very happy if you did.

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