theoldladyinmybones: A Living With Arthritis Blog

“I am a writer living in Vancouver, British Columbia. I am a poet at heart, but also write fiction, creative non-fiction and prose. As well as working on smaller pieces, I am also working on a novel and collaborating on a screenplay. Writing is my passion, not my job.

In my thirties, I was diagnosed with early Rheumatoid Arthritis. I developed this blog to share my experience in living with this disease. I also want to create awareness that arthritis is not a disease just for the elderly. Young people are susceptible and can suffer just as much. It is a debilitating disease that destroys lives. It affects employment, personal relationships and can cause depression. Knowledge is power. The more you learn about your situation, you can live a fulfilling life despite your disease. Sometimes you must learn to let your old life die and create a new one, like a re-birth.

In order to manage my time, as I am new to the blogging world, I will post once a week; if time permits, you will see more mid-week posts. Readers will experience stories, prose and even poetry about my experiences and the experiences of others.”

Read More: https://theoldladyinmybones.wordpress.com/

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Claire: My Wedding With RA

Hi RA Guy,

I’ve emailed you a couple of times before as a long time reader of your blog, (and now a follower on twitter which I’ve just joined, and love!) and I hope you’ll forgive my presumptuousness but I wanted to share some thoughts and images from my wedding day with you.

Why? Well, my wedding was put off by a year when the RA hit, and I do mean HIT. I’m not going to dwell on how bad it was, suffice to say unless you could have wheeled my bed down the aisle it wasn’t happening, a ring would never have fit, and I don’t think it’s legal to get married whilst high on morphine. Things improved and I learnt to manage, and the wedding was back on! When I started planning though, as I’m sure a lot of RA brides-to-be have found, it was initially very frustrating to try to work out a day that would be wonderful and also accessible. If you’d like to share my story in case there are others out there worrying, please feel free, I can only hope that it helps!

At first I thought of everything I couldn’t have. No long dress that I could trip on, or run over in my wheelchair if I was using it. No short dress that would reveal my often football-sized knees and strapping. No high heels. No steps at the venue. No venue that I wasn’t 100% confident moving around in. No staircase photos. No doing my hair or make up myself. No wedding cake thanks to the gluten intolerance. The list seemed endless….

But then, after remembering that this should be a happy day (!) , I turned it on its head and started thinking about what I COULD have. How about a 50s style mid-length dress? A bright blue pair of new Converse that I could fit my orthopaedic insoles into and be comfortable in? How about getting the legal stuff out of the way before hand and then getting hitched somewhere I felt totally comfortable, my own home? (England’s laws on where you can legally get married are archaic!) What about hiring the best make up person I could find, and asking my lovely hairdresser who’s been dealing with my hair all the way through the methotrexate hair loss to come over and style me? I love baking and am pretty good at it, although fiddly sugarcraft escapes me, so why not make a load of treats myself and forget about a traditional wedding cake? Once I started thinking like this, and threw the usual rule book about what you should do at weddings out of the window, it became so much fun.

I tried to keep it all as stress free as possible before the wedding day, as we all know what effect stress has on RA! Easier said than done, but some awesome friends and family helped with that, as did my wonderful husband (then fiancé), who’s been my most constant support, cheerleader, and peaceful refuge for the last five years. Knowing that I had planned events carefully to take account of my needs whilst still looking natural helped. For instance, my dad walked me down the aisle. Not because of any old-fashioned “giving me away” ideas, but because it was a lovely thing to do and meant that I knew I had a strong arm to lean on should one of my ankles or knees give way. I bought a totally gorgeous pair of high heels to wear for the aisle walk and photos, but one of my ushers had my Cons ready to change into immediately after. We had planned two breaks into the day where my husband and I could slip away and I could rest quietly before rejoining our celebrating guests.

On the day itself I managed to wear the heels for the aisle walk and about half the photos. My dress, designed just for me by the superbly talented and very understanding Jo at The Couture Company felt and looked wonderful. Having the ceremony at home and the meal at our local cafe (the quirky Kitchen Garden Cafe that did a delicious gluten free meal for us) ensured I was totally at ease with all the under-foot conditions. I even had the chance to look confident on my feet when we gave our guests a surprise lindy hop dance class! I started lindy hop in an attempt to relearn my balance when I started walking again, and now love it, going every week that I am able to. It made a pleasant change to be the sure-footed one in a crown of people attempting to move with varying levels of success!

Anyway, I just wanted to share; as I tweeted a few weeks back it feels as though you’ve been with me on my RA journey over the last two years, and you and the online RA community have really helped through this time. If there are any brides-to-be out there who are worried about a wedding with RA, please reassure them, it is possible to still have the most fantastic day with what you can do, rather than what you can’t. And as our photos hopefully prove, you can still look good whilst doing it!

http://stevegerrardphotography.com/claire-john-no-ordinary-wedding/

With best wishes for your continued health and happiness,

Claire
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Bloom Where You Are Planted: How Does That Make You Feel?

by Steph

For 2 consecutive therapy sessions with my psychologist, i turned up with acute flares in both wrists and knee respectively. When she saw the wrist splints and the knee support when i entered the consultation room, she asked me on both occasions, what the matter was. I told her as a matter-of-factly, that it was my RA flaring. Then she she asked me both times, something that no one else has ever asked me in my entire life.

“How does that make you feel?”

And that question made me think. It made me think a lot.

Read More: http://superfluousity.wordpress.com/2012/06/15/how-does-that-make-you-feel/

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Getting Closer To Myself: Does This Chronic Illness Stuff Ever Stop Feeling New?

“I’ve been at this for four years now.  But I don’t feel very practiced.  I feel kind of, well, not numb.  The opposite of numb?  Like I’m wading in quicksand?

To be honest, I don’t know how I feel right now.  But I wonder if this ever gets easier, ever gets less pressing.

I’ve been wondering lately if I’ll ever get ahead of my illnesses, if someday, I won’t feel quite so much like a sick person.

But it also worries me.  What happens when I get used to this?  What happens when things no longer rock my world off its axis?  What happens when abnormal tests, abnormal blood work, abnormal everything, becomes the rule rather than the exception?  Am I there yet?  Am I already there?”

Read More: http://gettingclosertomyself.blogspot.com/2012/05/does-this-chronic-illness-stuff-ever.html

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HealthCentral: Show Us Your Hands! A Story Of Hope And Community

Five months ago, RA Guy put out a call for submissions to a community collage showing the hands of people living with different kinds of inflammatory arthritis. “I knew I had tapped into something powerful when I saw my inbox completely full of photos,” RA Guy says. Many of the photos were accompanied by remarks like the above about how empowering it had been for the person to take the picture. “I felt that this deserved to be something more than just a one-time project, so I started thinking about people who I would enjoy working with. Lene’s name and Cathy’s name immediately came to mind.” At about the same time, I’d myself had a lightbulb moment while at the dentist and hurried home to write RA Guy an e-mail suggesting a collaboration. All three of us were already pretty overcommitted, but as RA Guy puts it, “when Lene sent me an email, I sort of figured that the three of us working together was meant to be.”

Read More: http://www.healthcentral.com/rheumatoid-arthritis/c/80106/153015/hope

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