Friday, December 19, 2014

#TBT Courtesy of Donny Osmond



I was out on the town yesterday, a mutual Christmas present between David’s sister and myself. We went to see Donny and Marie: Christmas in Toronto. Yes, the Donny and Marie with the last name of Osmond.


From the varying reactions we had when we shared our plans, it’s obvious that this is not to everyone’s taste. Sure, the show was a bit Vegas, something that wouldn’t be noticed in Vegas, but is noticeable here in the frozen North. But it was also absolutely wonderful. Both showed that they more than deserve their reputation for professionalism and careers spanning 50 years each. I had forgotten how beautiful both their voices are. They also know how to entertain. There were trips down memory lane,  there were duets and solos, songs from each of their many Broadway roles and Marie absolutely killed in a beautiful rendition of How Great Thou Art. But that was in the second act. The first was mostly about getting us warmed up with familiar songs.

We were in between songs, the anticipation rising in the darkened theatre, when the shape of a man in a suit appeared next to me. My first thought was that this didn’t look like the usher who’d been there up to that point. Then the man reached out his hand to shake mine, asked me if I was having fun, and I realized it was Donny Osmond. Then he moved down the stairs, singing and shaking people’s hands and I sat with a tingling hand and a huge grin on my face.

Donny Osmond and I had a moment! I may never wash that hand again…

Donny was my first celebrity crush.  I was 11, he was 16, but the age difference didn’t matter. That year, he got me through the hardest three months of my young life.

I had been in the hospital before, but in September 1973, I was admitted to a rehab hospital on the Danish coast. I’ve written about it before, but not in detail. Decades later, the memories have remained too painful.

The children’s ward in this rehab hospital was run like the orphanage in Oliver Twist. I cried constantly for the first three weeks, then I realized it didn’t change anything and I stopped crying. It was so far from home that my mother could only visit once a week, on Wednesdays, although I did get to go home for 48 hours on weekends. I loved Friday and Saturday was my favourite. Sundays, though, were spent counting down the hours and minutes until we had to leave for the long drive north.
 
The days of the week were long, even though they were filled with activities like school, physiotherapy, occupational therapy, pool therapy, meals (terrible food), and every afternoon, the entire ward rested for two hours, starting at 3 PM and lasting until dinner arrived at 5. This happened on our stomachs. There were no options, you had to lie on your stomach. In retrospect, there was a pretty good medical reason for that — it kept juvenile arthritis hips from contracting — but I’m pretty sure it was also to give the staff a break.

I’d often spend those two hours with Donny. I didn’t yet have an Osmond album — the tape player and my first Osmond tape happened four months later, as a gifts to me on my sister’s christening. I did have a picture of him that I got out some preteen magazine. I’d lie on my stomach, Donny propped up against the bars of the headboard of my hospital bed, and I’d dream. I’m not going to lie — it was at times a bit swooney, but mostly it was about going somewhere else in my head with someone I liked a whole lot. What did we do in those daydreams? Mostly just talk and be together, away from this hospital that felt like a prison. Away from the reality of juvenile arthritis. Away from pain, medical tests, injections, and having no control.

Since then, Donny’s always had a special place in my heart. Even during the years when I was temporarily too cool to like his music much. That phase didn’t last long, though. I gave in to being an unrepentant and lifelong fan after seeing him in Joseph and the Technicolor Dreamcoat

But then, my relationship with Donny was never much about the music. It was about feeling safe, about having someone to chase away the loneliness of being a little girl with a painful chronic illness. It was about friendship.

Last night, it felt as if for a brief moment, I saw my friend again. And somewhere deep inside of me, my 11-year-old self smiled and the circle closed.

Maybe next time, we’ll get to have dinner and catch up. A lot has happened in the last 40 years.
   

Tuesday, December 16, 2014

Peace in the Mid-Region



I had forgotten about acidophilus.


But I should start at the beginning. Which was my not-really heart attack in July, caused by an extra special flaring of GERD. Several factors contributed to this, including stress and the best gingersnaps I’ve ever had (and will now never have again) among them. The chief trigger, though, appeared to be my body developing an intolerance to meloxicam.

This was not good news, as next to Vioxx, meloxicam is the most effective NSAID I’ve used in a very long time. Not only did the deal with pain related to 40+ years of RA damage, but it also had a good effect on my Fibro. I tried to do without an anti-inflammatory for a while, but it very quickly became obvious that this was a Very Bad Idea indeed.

So, now what?

Due to a previously developed intolerance, I can’t take anything that ends in -profen, excluding an entire subclass of NSAIDs. So I tried naproxen. Which is a good anti-inflammatory, but it burns the crap out of your stomach.

Fast forward several months to late November. I was still on naproxen, which together with Humira, allowed me to have a really intense schedule with an equally intense workload, but also left me popping over-the-counter Zantac like they were mints. Nothing worked.

And then I had a conversation with my mother. Her bad hip had her dosing up on some heavy-duty painkillers and she subsequently wasn’t happy in the mid-region. I reminded her of how acidophilus can be a wonderful balm for opioid side effects, such as your stomach trying to eat itself and being rather blocked (if you know what I mean).

Amazingly, it only took me week or so before the light bulb went off and I realized that the advice I’d given my mother could also apply to me.

Some days are blonder than others.

In my defence, I had stopped taking acidophilus earlier this year, due to my body deciding it was intensely sensitive to everything. Although I had some in my fridge (it’s a staple, really), out of sight had meant completely and totally out of mind.

In case my body was still as hysterical as a supermodel who hasn’t had her lettuce leaf, I started with half a tablet. The next day, I took a whole tablet.

Four days after I started, my stomach had calmed down and my Zantac popping had been reduced by two thirds. The side effects are still there, but they are now entirely tolerable.

And yes, I know I wrote a chapter in Your Life with Rheumatoid Arthritis that includes mention of acidophilus. I know I’ve written posts about it for HealthCentral and that it’s one of the first things I mention to people who have bad gastrointestinal side effects from RA meds. But somehow, when it came to me spending 24 hours a day with a giant hole in my stomach, it never entered my mind.

This might be a good time for someone to smack me.


Disclaimer:
Although I’ve been told by the naturopath that acidophilus doesn’t have any side effects (except loose stools if you’re taking too much), I would be remiss if I didn’t recommend that you discuss this with your doctor before taking it.
  

Friday, December 12, 2014

Our Hands Can Community Stories: November 2014 – Thankful


Gratitude. Every November (and October in Canada), we all pay a little more attention to what we are thankful for. It makes you feel better to realize those small moments of quiet joy. In November, the Show Us Your Hands! Picture Project asked the inflammatory arthritis community “What are you thankful for?” We got lots of wonderful submissions.

Tia Maria showed us an impressive bruise, saying “I'm thankful for this bruised hand because it signifies finally getting my Remicade infusion and hopefully feeling this flare slip away soon.” Thank you so much for sharing your wonderful perspective with us!


Several people in the community are thankful for their pets. Among them were Trisha and her “cuddle buddy, Chuck … He loves me so much.” We all agree that he has a wonderful face! Jill was thankful for her cat, who in the true (and kind of endearing) spirit of all cats, turned its head just when the camera went off.


 
Christina submitted her photo on Twitter, saying she was “feeling thankful this weekend cooking with arthritis.” We don’t know what you were cooking, Christina, but it looks good!


Kathleen got a manicure and was “grateful to the lady who made my nails look nice … Little things mean a lot.” Your hands look beautiful, Kathleen!


Can someone please do a drumroll? It’s time to announce our winner! Congratulations to Ruby for this great photo. Her caption was “When I was struggling to get a diagnosis in the early days one of the things I stopped being able to do was play video games. Specifically guitar on guitar hero and drums on rock band. I’m so thankful that 7 years after my symptoms started I'm playing a little guitar hero here & there.”


You're the lucky winner of a signed copy of Why Does Mommy Hurt?: Helping Children Cope with the Challenges of Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease by Elizabeth M Christy. Contact us at infoATsuyhDOTorg with your mailing address and we’ll get the book to you before the holidays!

Do you want to be part of the Picture Project in December? Our theme is The Holidays. Take a photo of your hands doing something related to how you celebrate Christmas, Hanukkah, Kwanzaa, Festivus, or anything else, then post it on the Show Us Your Hands! Facebook page or on Twitter and tag your post with @showusyourhands. Submit as many photos as you’d like.

The December prize is a copy of Lene Andersen’s new 2015 The Seated View calendar.

Just a reminder: by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.
   

Monday, December 08, 2014

Kurt



My mother has two brothers and a sister. They were born in two teams of two, the two oldest, Poul and Lissie, born about 10 years before my mother and Kurt. Kurt was the baby of the family, five years younger than my mother, and true to form of the youngest child, got in a significant number of scrapes in his life. He is also the source of the infamous family story of a small child at the circus loudly asking his mother why the elephant had five legs.

  
Kurt and my mother were always close. He was her little brother and from very early on, she kept him safe. He had a tendency to climb things, trees and giant rolls of telephone cable, but changing his mind about climbing down once he saw how high up he was. It was my mother’s job to climb up and get him, carrying him down on her back. They called her Monkey Mom.

 
In the next generation, for a long time we were only my cousin Hanne and me, with 10 years between us. Ten years after that, three others came along: Søren, son of Kurt and his wife Jytte, my sister and Hanne’s daughter. Before they came, I remember family gatherings of me, maybe my cousin, and a lot of tall adults. I hung out in the periphery, reading or playing quietly with my toys while they sat around the dining table taking forever to finish, afterwards watching the men having a snooze (Kurt and my grandfather) or leaving for a postprandial walk (my dad and Poul), while the women gathered in the kitchen to clean up. Even back then, I knew that the kitchen was where I wanted to be — it wears where all the interesting things happened! Once coffee was served, I travelled from lap to lap as the adults  played cards, playing with their stacks of pennies, or sitting below the table among everyone’s legs, making up worlds of my own.
 
Kurt had a stillness about him, a quiet sense of being centred and standing solidly upon this earth and with a warm, low-key sense of humour. He was a brick layer and a very good one, building houses that became homes and he carried that within him. Kurt stood as strong and reliably as the homes he built. I remember his hands, big and strong, with calluses, winter skin from always being out in the air, and scrapes from bricks and other building materials. I remember being at his and Jytte’s house when he came home from work, dressed in thick builders pants, the many pockets filled with tools, and all of him white with brick dust. My image of him is always accompanied by the smell of brick and cold air and the faint scent of cigarette smoke.

When my father died, Kurt started calling my mother often, lending strength and helping her find a sense of home in this new life. They’d have long conversations, talk until they were done. He’d never let the cost of an international phone call from Denmark deter him from being with his sister. In the 13 years since then, the two of them would talk several times a month, as close as they were when they were children.


Kurt found his way through some significant challenges in his life. Several years ago, surgery for an aortic aneurysm left him disabled and unable to work anymore. He adjusted and found joy in retirement, him and Jytte getting closer, the two of them rejoicing in grandparenthood. About a year ago, he received a diagnosis of lung cancer. He bore this with grace, staying as strong and solid as ever. He focused on the quiet joy and beauty in his life, watching the world from his balcony, eating good food when he could, and doting upon his grandkids.
 
Two weeks ago, Kurt went into the hospital and was told he would not go home. He received this news as he had everything else of this last, long challenge: quietly, with acceptance and making a few wisecracks. Last Saturday, we got the news that he had let go. At the end, he was surrounded by beauty and love, Jytte bringing in a bouquet of white roses and freesias, the nurses lighting candles, and his wife and his son by his side.

Our home has a gap now, an absence of quiet strength. And yet, every now and again, I still smell brick and cold air and a faint scent of cigarette smoke. Somehow, his presence is still here.