What I’d like to tell my friends…

Dear friend,

As you may or may not know, I have RA. I really try not to talk about it that much.  You may think I complain about it, because I can no longer fake a “great”, a “good”, or even a “okay” when you ask how I am doing – but I really do my best to not whine.  There are tons of lists out there that will tell you the “Top 10 myths of RA” etc., but somehow saying that my RA is not “just arthritis” doesn’t seem to be enough on some days. Here’s what I really want you to know:

1.  RA isn’t just creaky, stiff joints.  While I no longer associate “snap, crackle, and pop” with cereal, RA presents itself with many more symptoms.  The most recognized symptoms are joint pain, swelling, stiffness, muscle pain, and fatigue.  However, RA is a progressive autoimmune disease that is not limited to joints.  It can affect blood vessels, the heart, eyes, skin, etc.   For me, the most frustrating symptom is “brain fog” – the inability to focus or think because of the pain and fatigue.

2. RA is SERIOUS.  I know you know that, but there’s serious and then there’s SERIOUS. To justify the caps, two out of three people with RA can’t keep a job.  It’s not always because of some physical deformity, but because the daily pain and fatigue is too crippling.  Additionally, having RA reduces my expected lifespan by more than 10 years.

3. Yes, I’ve tried Tylenol. In fact, when I first was diagnosed, I took more Tylenol and Motrin in day than most take in a week. I popped OTC pain pills like candy.  Now, they’re about as effective as candy.

4.  I take prescription pain killers.  While they somewhat dull the pain, I’m not sure if the loopiness and severe withdrawal symptoms from missing a dose are worth it.

61703-350-38_81-4417_15. Each week, I inject myself with a chemotherapy drug.  Not to kill cancer cells – because it makes me feel better.  Yes, somehow one to two days of nausea and malaise is better than a week of not being able to move.

6.  I also visit the doctor once every 4-6 weeks for infusions of biologic medicines.  That’s because the weekly injections of all the magic RA drugs you see advertised on TV didn’t work for me. BTW, I really hate those commercials.

8.  I’m pretty much bipolar when it’s come to moods now and I’ve been doing my best to hide it.  Some days, I’m sure a cure, or at least a treatment, is right around the corner and my normal life will return soon.  Other days, I want to hide from the world and all the things that are now difficult or impossible to do.

9.  I haven’t accepted my new normal yet. I still want to be the “old’ me that could hang out with you whenever doing whatever, even if I can’t.  This means that I’ll say I can do things, and then have to back out.  It means I’ll try to forget about everything on this list when I with you, but being reminded about capabilities and energies that I’ve lost may trigger a (temporary) sour mood.

10.  Please keep me in your life.  It’s easy for us with RA to become disconnected.  When I don’t come to a few  get togethers, please don’t stop inviting me. I know I’m preoccupied with my own problems right now, but I still want to know what’s happening in your life.  After that first second of self-pity, I’m truly excited that you are training for a marathon, backpacking in Alaska, etc. I still want to be friends and be there for you as much as I can be.

With love,

Your friend with RA

P.S. If you’d like to read a more conventional list about RA, one with all the scary statistics (like a 60% greater chance of heart attack and 25% risk of dying from infection), I really like this one: http://www.healthline.com/health/rheumatoid-arthritis/facts-statistics-infographic.

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