RheumaBlog

Same dragon, different day.

Wow. It’s Friday already and it’s been … um… a while since I last posted. Have I been too Seriously Busy? Not really. I’ve been spending my days and nights with my Mom, who’s still recovering from pulling a muscle in her low back last month. Well, actually, she was almost recovered about two weeks ago, but then her new, young, recently-adopted-indoor-cat, Kitty-Kitty, slipped out the front door one morning, and Mom went haring after her, terrified that her little friend would run off, get lost and get hit by a car. She caught Kitty without much effort, but lost her footing in the process. Down she went, Kitty-Kitty clutched to her heart.

The cat was fine. Mom, not so much.

We took another trip to the doc’s. While Mom’s in fabulous health for her age, she isn’t the spring chicken she once was. She has osteoporosis and the muscle pain tires her out. So, the doc was a little worried. He had her walk up and down the hall for him, and told her she looked like she was walking in a side-wind. He gave her a thorough exam, asking her to move this way and that, noting when she winced. His concern earned her an extended session with an x-ray machine, a prescription for Darvocet and a month-long round of physical therapy.

Fortunately, the x-rays showed no damage to bones or discs, but she absolutely pulled and really aggravated that nearly healed muscle all over again.

And so I packed my bags for another extended visit. I kept an eye on her when she was taking the painkiller (it can make elders, in particular, a bit wobbly on their pins), heated a rice pack in the microwave for her to keep snugged against the sore spot, cooked meals and wheedled her into eating them (just like she did me, a lifetime ago), did a little housework and generally kept her company. We even went out to eat a few times—one of them being her 79th birthday, a yummy dinner out with the rest of the family. She didn’t eat much that night because she was hurting so much. Did she say so? No. She only told me later.

So once again, it was nice to spend that time with Mom, giving back a little of the love and care she’s given me all my life. We exchanged mothering, this time, because I’m still gimpy myself, see. The cortisone injections just didn’t work, so my bursitis remains a daily, nightly aggravation. I walk like the Tin Man after a good rain. It’s amazing he was such a pleasant fellow. I’m still holding out some vague hope that they will work, eventually, but I have to be honest. I don’t really think they will anymore.

So it was nice to loll around a little with my Mom, awash in the kind of warm, concerned compassion that only a mother can give. If my late Dad had come through the door in the evenings with a coloring book and crayons for me and a big hug and kiss for her, it would have been perfect.

We both miss him.

Here’s the thing, though. While I was there we talked a lot, more and more deeply than we have in a very long time. We talked about everything. We reminisced. We told old stories and new ones. We laughed. We agreed to disagree about politics and the way our country is headed. We marveled over the antics and terminal cuteness of Kitty-Kitty, who lost her tail to a car and now has a tiny stump she wiggles when she’s watching the squirrels out the window. We talked about her pulled muscle and her frustration with it.

And we talked about my rheumatoid arthritis and the bursitis it’s causing. I realized as the days passed that although Mom knows have RA, she didn’t really know much about the disease or about how it affects me at times. I was an adult living in Germany when I was diagnosed, a long, long way from home. By the time I returned to the States, and later, to California, the disease was starting to go into remission. Mom has seen me go hiking, fishing and camping while limping along gamely. She’s seen me keep working and living as normally as possible while fighting flares, and she knew that my RA had gone into remission and, after a long absence, return. But she’d never seen me cry as I tried to walk, or attempt to pick something up with fingers rendered useless, or sit, rocking, on the sofa, lost inside myself while I waited in clenched silence for the awful pain to ease.

She still hasn’t seen that. I hope she never does. But because we had time to sit and talk, just let the conversation take us where it would, she knows now how RA has been for me. She knows how I’m struggling to cope with and accept this latest challenge, this bursitis. She’s informed.

Being able to just talk about it without trying to hide the details or act like I’m tougher than I am was cathartic. I write all the time about my RA here, but (like most of us, I suspect) I don’t mention it much at home or while I’m out and about. I just do my best to live and do like everyone else. RA is always the elephant in the room, studiously avoided but impossible to ignore.

And yet communicating to others our limitations, our pain and our fears is one of our deepest human needs. Why is it so bloody hard to do?

“[There is] no general theory about pain. Each patient discovers his own, and the nature of the pain varies like a singer’s voice, according to the acoustics of the hall.”

–Alphonse Daudet, 19th Century novelist and patient in his memoir, “In the Land of Pain”.

“Communicate” comes from the Latin “communicare,” to share. Share. This last week, for the first time in longer than I can remember, I had an opportunity to really share, face-to-face with someone I love, what it’s like to be me with RA. I shared my limitations, my pain and my fears with my mother. I also shared my hope for relief from the pain and disability, what I know about the medicines and treatments for the disease, how RA makes the body attack itself and cause all the troubles it does, and finally my dream that one day, medical science will find a cure and send it packing into history like polio and smallpox.

When I left this morning, we gave each other a big, tight, long, warm-to-the-heart hug. Mom is still having pain, but it’s less intense than it was. She’s gotten used to the Darvocet and isn’t wobbling from it. And she goes for her first PT session tomorrow morning. I wanted to go with her, but she said, “I can do it myself, sweety. Don’t worry so much.” Finally, my dear aunt is coming to stay with her on Sunday and Monday. Momwon’t be alone for too long.

I didn’t want to leave, but the weatherheads say our first snow of the season is coming this weekend—maybe by tonight—and it’s supposed to be a real doozy. We could get as much as 10 inches. So I had to come home to batten down the hatches. I had to make sure the fridge was stocked with food and the wood-ring next to the wood-stove was full. I needed to blow the danged leaves off our very steep driveway in preparation for taking the cars up to the street once the snow starts falling. (they’re slick as oil when they’re wet.) I needed to see the rest of my family, too: Mr. Wren, Cary and Matt, Finny McCool and Shadow, cats PIB and Stubbs, Goblin and Sister.

So I’m home. My hips still ache like hell, damn them. But I’m feeling very peaceful inside.

Thanks, Mom.

6 thoughts on “Sharing the pain

  1. Polly says:

    Lovely post – glad you both managed to find get so much positive stuff out of such a difficult time!!

    Polly x

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    1. Sabine says:

      These a really valuable thoughts. Thank you. I find it such a struggle to share at times because I fear that I will end up being defined as this illness and losing being me in the process. When we are all home in the evening I try so much to not talk about how my day was affected by being ill – again! But at the same time there is such a need. So in the end, we always come back to ‘the elephant in the room’ and I feel defeated.

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  2. Laurie says:

    What a gift to be able to share with someone. You’ve given me inspiration for a post, I think, so thanks! Hope the crap bursitis gets better. I am sending happy thoughts in YOUR direction, since you’re always sending them out to others and wishing you nothing but the best! 🙂 L

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  3. Lana says:

    It is funny that no matter how old we are, and even when we are moms, our moms are still our moms and they act like it too. My mother is still pretty strong and independent, too (knock on wood), but it does not mean that I don’t try to be her mom. It is good that you had an opportunity to catch up and spend time together. I understand what you are saying about not showing your mom the extent of your RA. I know that feeling all too well. Our moms don’t need a reason to worry about their grown children – simple as that. I am pretty good at hiding my symptoms as well and I don’t really tell her much because I know that she has more things to deal with then worry about me.

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  4. Squirrel says:

    What a great post. I recently had a chat with my mum about my RA and that felt good too. Mums are amazing. So sorry the injections didn’t work. Will you get to see the doctor soon for a follow up?

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  5. Cathy says:

    How lucky to be able to share with your mom. I hope you feel better soon. Are you seeing the rheumatologist or calling him soon?

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