I’ve never been a late sleeper. I have friends who sleep until the afternoon on weekends. Being from Neptune seems more normal to me than that.When I am asleep though I’ve always been a heavy sleeper. I slept the night my first night home from the hospital, and my mom ran into my room in the morning thinking I must be dead. That ability to sleep through anything, RA has taken that from me.
I had a friend in college who called me “Hippy.” My hip bones have always stuck out and been pointy. I frequently ran them into doorways and balanced children on them. Back then I was aware of my hips, now I’m downright sick of them.
The thing about having hip problems is that you never again forget that you have hips. No matter what position you are in, your hips are being used. This means that short of floating in a hot pool, you are in pain. Sitting, yup. Standing, ouch. Laying down, definitely. Walking, oh yes. I suppose I could get into headstands.
Inevitably I find myself sleeping on my side. This means that inevitably I will be woken up by a night flare. RA has led to bursitis in both of my hips, making it sometimes tolerable and most times horrible to sleep on my side. Cue the heating pad…”click click click” to HIGH. 20 minutes later cue the pill bottle opening, “Pop.” Cue the tossing, cue the turning. Cue the deep sigh.
It’s not that we need meds to fall asleep. We need meds to get rid of the pain, to fall asleep. And most times the meds that get rid of the pain just lead to a strange wakeful dream state. Last night I took my dog to the prom, in Turkey.
“Hey…WAKE UP!!!!” That’s the voice of RA.
It was 12:43 AM. I had been asleep since sometime between 10:30 and 11:00 PM. Sound asleep. I went to bed without RA pain. I took 3 Advil, because I know I need NSAIDS to control the achiness.
At 12:43 AM, I sat up in bed. First sensation: Something hurts. What? I stared at the clock. I didn’t know why I was awake.
Pain… Throbbing pain with some heat to it, pain in the right knee and left elbow. Both joints. Why?
Ah. RA flare. Damn. I have to admire the power of RA, the ability to wake a person from a sound sleep who had no pain, no swelling, no nothing a few hours ago.
First step, I think, I’ll wait it out. I’ve done it before. I will lay on this bed and feel it and wait until it stops. Sometimes it does. Or did, earlier on in the disease. I put on some Voltaren cream which I keep on my nightstand. I’ll give it 30 minutes.
Ok. No relief.
Second step, Ice pack. I walk downstairs like a 90 year old person and sit in the family room with an ice pack on my knee and elbow. “His Girl Friday” on TCM. Love Cary Grant. Love Rosalind Russell. She had RA, too. I eat some cantaloupe and drink some milk because I may have to go to step three. I wait 30 minutes.
Ok. No relief. And now my right elbow starts to speak up as well.
Third step, Lortab. I hate taking it because I don’t like what it does to my head ( dreams, weird dreams and residual brain fog…”Could you put the butter in the…what’s it called…not the stove, not the sink, the…eh…it’s big, stainless steel, holds cold things…the…refrigerator?”) and it often upsets my stomach but I have no choice. By now, it’s nearing close to 3 AM and I have to work tomorrow. Oh, if only I could sleep during the day… don’t go there. So I have coated my stomach with food and milk and I take 2 tablets of 7.5 mg Lortab and wait 30 minutes.
It’s 3:43 AM. Honest, to the minute. I have been awake for three hours listening to the voice of RA.
I climb back into bed. I use a pillow to support my knees so they don’t touch. I use a pillow to cradle my hand and elbow.
I don’t hear the voice of pain any more that night.
6:00 AM…a total of four hours of sleep, two of natural sleep and then two of drugged sleep. Time to get up for work.
I look like hell.
Oh, and RA… I’m awake. Thanks, buddy.
I like to compare my walking to a finer style, that of Quasimodo, (the Hunchback of Notre Dame). I was staying with my brother before my diagnosis but after my symptoms had started, and he asked why I was walking like this famed literary character. “I wish I knew…” I stated. I too was trying to hide my pain (at this point) because I was afraid of what it might be. Because I knew what it might be.
RA started for me in my hips, before progressing slowly to my hands. Luckily my brilliant Rheumatologist recognized what was going on and got me on the right meds fast enough so that my hands are only affected now and then. But those hips don’t stay quiet for long.
You’ll often catch me sitting on a heating pad at work, or standing around with paper towels coming out of my pants (to keep the Voltaren gel from soaking through my clothes-what?), or with two bulges in my leggings (ice packs). I don’t hide anything. I see what my mother goes through from hiding her pain, she gets no sympathy, no empathy, no understanding.
When someone asks what my ice pack fetish is all about, I say, “Oh it’s because I have Rheumatoid Arthritis-do you know what that is?” Usually the answer is “No” or “Yes I have that too in my knee!” It’s a great chance to educate people about what is going on with you and so many other men and women. I never complain or bring it up, but informing people allows them to ask how you are doing today, and sometimes that’s all you need in a day to make you feel a little better.
RA makes me walk like Frankenstein; remember Peter Boyle in that great Mel Brooks movie, Young Frankenstein… that’s how I walk. I dance like him, too.
So I hear this at work today: “You’re walking funny. What’s wrong with your foot?”
( And I’m trying so hard NOT to walk funny, so hard. I am trying to stand up straight, walk slowly but without a limp, and I just cannot do it.)
My response: “Oh, it’s just a little ( lower voice) sdkjfiealkfp’s” , making sure I let the name of the culprit drift off into the air.
Why I am not naming the culprit, why I am not honest with others about RA:
Because it’s easier. Not very many people even know what it is. And to explain it makes others look at me as if I had three heads. You know, the old “You don’t look sick” reaction.
Because it’s embarrassing. I want to wear fashionable shoes and walk fast on Main Street. And I haven’t been able to do so. I gave up a shoe shopping trip last week because I knew I wouldn’t be able to get my foot into any shoe in the store. When my friend bought me a pair anyway, I smiled and put the shoe on and pretended it didn’t hurt. It won’t hurt someday, I think.
Because I don’t want to talk about it. It’s just boring. And no one pursues the issue after I say “sdkjfiealkfp”, which is good.
Does anyone LIKE to talk about RA? I’ll write about it here, mainly to see if what I feel is what you feel, but to talk about it, as if it were interesting conversation? No.
She didn’t live long enough for either of us to meet her, so we only have family accounts to remember her by. Most of them describe her as being confined to a wheelchair, and very quiet about the amount of pain she was in.
Back then there weren’t many treatments for RA except for cortisone shots and gold shots, which she got once a week. She died of complications of RA in 1963.
Based on what we go through today with the benefits of advanced medicine, we can only imagine what she went through in the face of RA.
She reminds us on a daily basis to be grateful for the treatments that are available to us today or may be available in the future.
Welcome to GeneRAtions.
This blog chronicles the lives of three generations of women with Rheumatoid Arthritis; a grandmother, a mother, and a daughter. The grandmother died in 1963 of complications from RA, the mother and daughter continue to fight the disease with medicine, resolve, and humor. Here you will find their stories, their questions, and their strength.