Some Anecdotes & Some Silver Lining: Stories of arthritic hands, Lady Gaga, and advocating for yourself and your health! ~ Ashley’s Health Diary, Entry #26

Entry #26 – December 3rd, 2010

I’ve got a few interesting antecdotes to share in this entry, and so I’ll split it up into a few separate stories, if you all don’t mind!

First let me tell you about my hands. (Bear with me here!)  In a previous post, I bemoaned my “ugly hands” and was embarrassed to post engagement ring photos because of my crooked fingers, knobby knuckles, and swelling.

Last weekend I was asked to be a photo double for a major motion picture that was filmed in my hometown. The catch? The majority of it was doing stand-in shots of THE HANDS! I had two choices: turn down being part of a feature film (if you know me, you know that wouldn’t be an option! lol) or, take advantage of the opportunity, and use it as a way to OVERCOME the insecurity about my hands. So, I took the casting agent up on the offer, and, on Sunday, showed up before call time anxious but excited. Well – it turned out that my not being able to run (stupid knee!) was an issue – and one that left me feeling a bit down, I’m not gonna lie …. so did the fact that they “asked for a size 0″ and “not a 2 or 4″ (only by Hollywood standards would that be considered too big.) So what’s the good news?  The director absolutely LOVED my hands. He said that they were beautiful and, in his words: “perfect.” So, while I was bummed that I ended up not being able to do the scenes because of my gimpy knee and my appalling jeans size (kidding) — the silver lining was that — for the first time ever — I was told I had nice hands, in spite of them having been “arthritic” for 17 years!

The proverbial “icing on the cake” was on Monday. I had to get my engagement ring resized because it was too BIG! Turns out, even with my knobby knuckles and the occasional swell, my fingers are a lot more petite than I’d long thought – and I couldn’t believe it! One of my (silly) fears about getting engaged was that the ring wouldn’t fit because of arthritis. Luckily, it was the opposite issue! Don’t let your fears or perceptions cloud your reality! :)

These two events led me to believe that a.) we need to accept ourselves as we are and b.) conditions like arthritis are fluid. Hear me out – for “part A,” I say, do something outside of your comfort zone that challenges an insecurity about yourself. Whether it is a body-image issue OR feeling sub-par because of living with chronic illness….just DO IT and then soak in the benefits of accepting yourself as you are, and accepting “what is” — and turning a negative into a positive. As I was on both counts, you might be surprised by the outcome! Yes, there will be stumbling blocks: I gave up a role because I can’t run through the woods….or run, at all. But, as I’d mentioned, there will always be silver lining! “Part B” – our conditions are fluid. What this means is that they will lull and flare from day to day or even year to year. With RA, certain joints will be affected more or less at certain times in your life, this will change over time, most likely. Things may be bad now, but hold hope that they could and very likely may get better for you!!! Yes, someday, I might have to get my ring resized again – maybe made bigger – but, for now, my RA affects other joints more so, and I was lucky not to have bad hand deformities from it. Why? Because, just like the disease itself, treatments are fluid, too, and they’re always evolving. Many people in my generation will be blessed to not have as bad deformities that older generations were unfortunately faced with. This is because the treatments for arthritis – along with early diagnosis and specialized care – have helped to cut back on the problem. I’m not saying that my hands are beautiful but they’re beautiful to ME now. That’s the thing about arthritis AND about life – it isn’t always pretty, but we can make the best of what we were given!

My second little anecdote is about my Chiari Malformation. (This is a brain/neurological issue that was addressed in my previous Health Diary entry.) I was diagnosed with symptomatic Adult Arnold-Chiari Malformation. I hate to admit that I’m unclear whether it is Type 1 or Type 2 since I had some signs of mild occulta spina bifida on some vertebrae, but the point is, I need a form of  brain surgery. So, OK, let’s break this down: most people would be terrified about the procedure itself. Me? Oh, no. I’m worried about my hair, and Lady Gaga. You read that right.

I WILL say that I am quite afraid of anesthesia (I just don’t like being put under – this has always been an anxiety of mine through every procedure I’ve had) – but the actual surgery, the recovery, the pain – I’m facing it, I’m strong, I’m dealing with it, and I’m okay with it because I am approaching it from a positive place, hoping that it will alleviate some of my pain and my symptoms, and praying that it will improve my quality of life.

So, where do my hair and Lady Gaga come in? I’ve cried about the surgery twice. The first time, I had an emotional outburst (that my fiance had to witness) about shaving my hair. I’m only human, and I’m a girl. Vain? Yes. I will admit that vanity is one of my not-so-pretty (pardon the pun) character flaws – but don’t we all have less-than-stellar personality traits? Yeah, so mine is vanity. I’m not shallow, but I do care about how I look. Big whoop. I’ve also been growing my hair for a while now and so to even cut it let alone have some of it shaved….mega-anxiety-inducing, especially because I’ve already been worrying about it thinning from Methotrexate use and/or folic acid deficiency! Once I found out that they don’t shave as much as I thought, I calmed down. Most of my hair will cover the shaved part, and, if not, well I’ll buy some super-cute scarves….and when long enough, get extensions (which I’ve always wanted anyway, and now I have a good excuse for them….there’s that silver lining again!) This also gave me the opportunity to realize that the people I love don’t necessarily care about my outer appearance as much as the person that I am inside :)

The Lady Gaga incident happened last night when I realized that I would most certainly not be able to go to her February 4th concert here in Pittsburgh because of the surgery. I missed her in September and vowed that I’d save the money to buy a ticket to go see her in February. I was crushed: she’s been such an inspiration to me both artistically and as a humanitarian. I love her, and I love her music. (Additionally, she’s an advocate for Lupus and the voice behind one of my favorite quotes: “God Makes No Mistakes, Baby I Was Born This Way!”) I’m a pretty big fan and so I felt super let-down. Then I wondered about my priorities. Hair? Lady Gaga? This is surgery, one. And two, a surgery that could change my life for the better!

The last thing I’ll leave you with is less of an anecdote and more of a plea. It is this: advocate for yourself as a patient. Be diligent. If you know in your gut that something is wrong with your body, trust your instincts. Whether it is arthritis or fibromyalgia or something else, don’t let ANYONE – peers or your doctors – tell you that it is all in your head. I have known for years now that something or more than one “something” was physically wrong with me in addition to the juvenile arthritis. Many of my doctors wrote it off since I’m 1.) young and 2.) female.

Sad.

YOUR DOCTORS SHOULD CARE!!

I had a doctor tell me it was all in my head and I’m SURE that friends/family thought the same. However, I never gave up. In college, I was told I had fibromyalgia. I might, I might not, but I knew that wasn’t the answer I was looking for. I kept on and on and now have a number of other diagnoses that MAKE SENSE. Only when you have the knowledge of knowing what is truly wrong can you go about appropriately treating it. There’s always room for human error. I’ve had pharmacies mess up my medications; I’ve had doctors miss the same diagnoses for, well, my whole life, basically. So, trust your body! Don’t let anyone tell you otherwise.

I’m now going to gently step down off my soap box. (Gently, because this cold snowy weather is making me sore!)  I will let you all go.  If you’d like, you can check out my personal post about “being positive” while being a spoonie, and how to deal with the “naysayers!”

Enough about me – I’d love to hear feedback on this entry – can you relate to any of these stories?

Also – how was your Thanksgiving? There’s always something to be thankful for, even when living with arthritis and other chronic pain or chronic illnesses. Your support system, your doctor, your caregivers, the researchers, and, well, just waking up. The holidays are the perfect time to be grateful, but we should try to be so all year ’round! :)

And… how is your arthritis doing in the winter weather? I wanted to mention, too – I’m trying an NSAID gel again. Do any of you have relief with these prescription ointments? I’ve used a couple different brands before, but, I guess it’s worth another try. The hyaluronic acid (chicken fat) injections seemed to help my knee a bit….well enough that I’m going to start using an elliptical daily at least for a little bit (I hope!)  Does anyone have any suggestions for easy and arthritis-friendly neck and shoulder exercises so that my neck can be stronger going into surgery?

I can’t wait to hear your feedback, and stay tuned for new blogs all about arthritis! My personal journey via these “Health Diary” entries are just one portion of the informative blogs that are posted here! So check back often :)

Please, share your stories, leave a comment: let’s talk! And remember: “turn setbacks into stepping stones!”

Stay Well and Stay Warm,

Ashley Boynes

Don’t forget! If you want to warm up your heart during these chilly winter months and do some good for the holiday season, simply text the word ACTION to 27722 to donate $10 to the Arthritis Foundation, Mid Atlantic Region’s Million Dollar Campaign for Arthritis!

5 thoughts on “Some Anecdotes & Some Silver Lining: Stories of arthritic hands, Lady Gaga, and advocating for yourself and your health! ~ Ashley’s Health Diary, Entry #26

  1. Thanks for sharing another well written and poignant story. You always inspire me and your attitude is contagious. Im sure you are looking at the “new” diagnosis as something that could explain many of your unexplained symptoms. Hoping the surgery is a success and you will be feeling much better in the near future.

  2. Ashley .. I have read numerous and fantastic blogs as written by you but this to me is your best ever. I cant believe how you always find a silver llining for any negatives that you may have. To me you are a fantastic lady with a positive attitude and one that gives others hope to find that silver lining. I know if somehow lady Gaga could read this blog that you would have a front row seat. Always stay the way you are and stay strong.

  3. Oh my word, Girl! I could have written the part about listening to your body myself. As a matter of fact, I may just do so on my blog. Thank you for sharing about your battle. You are an inspiration to those of us with our own Invisble Illnesses.

    When I write my blog I will for sure link back here to yours.

    Happy Day!

    Pam

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