January 3rd, 2012 –
I have not done one of my more personal Ashley’s Health Diary posts in a while, because I realized that it was more important for me to educate about rheumatic conditions than to talk about my own story. However, I do realize that as a patient advocate, that sharing my story is important, too, in letting the world know what we all deal with. So, I have decided to do periodical updates, each quarter of the year. The majority of my blog posts will continue to be awareness, education, and inspiration based, but occasionally, I will update you all on my life — particularly because, as of late, many of you have inquired as to how I am doing!
Well, let me just say that 2011 was the best year yet for me, filled with ups and downs, but mostly ups. Sure, it started off difficult with Chiari brain and neck surgery last February. But, that was followed by a lot of cool things: attending one of Oprah Winfrey’s last-ever shows, getting married on the beach, getting my new kitten Jack-Jack, being named one of Pittsburgh’s Top 40 Under 40, being tweeted by Oprah Winfrey on World Arthritis Day, speaking to members of Congress for arthritis advocacy, making a few TV appearances, going to some fun concerts, and capping off with a surprise trip to New York City, courtesy of my wonderful husband.
Sure, there were other bumps in the road. I developed a lupus-like syndrome (suspected drug induced lupus) and have had some scary spasmodic episodes. I gained weight and lost self-esteem and have had issues with my hair growing back since my Chiari surgery.
However, all of the good by far outweighs the bad. I am grateful that 2011 was such a wonderful and amazing year, and I hope that 2012 will be just as awesome.
As for the health stuff, here’s the most recent update on my “situation.”
After meeting with 4 different rheumatologists in the last year (my usual one for a decade and a half, a new lupus specialist, and 2 others) I’ve been told that I have a “unique” case of RA. Yes, it is certainly Rheumatoid Arthritis. However, they are saying it isn’t “classic” in its behaviors. (Is there a such thing as a “classic” case of RA?) Basically, RA is the primary suspect, but they’re calling it an overlap syndrome where I also have characteristics of other conditions: lupus, sjogren’s, and palindromic rheumatism, specifically. Even my Celiac Disease, I’m told, could be a part of this overlap syndrome. As of now, we’re still treating it like RA and drug-induced lupus from a previous anti-TNF. A blessing, though, is that, contrary to popular belief, two of these 4 doctors told me that patients who have an overlap syndrome sometimes do better than people who just have an advanced case of one of these ailments alone. Interesting.
So, as of now, I’ve weaned off almost all of my meds. I am just on a biologic infusion and take an over-the-counter NSAID as needed. Occasionally, I need a steroid for flares, or OTC allergy meds for allergies. I very rarely ever take pain meds/opiods/narcotics and am so glad to be off my weekly immunosuppressant which shall remain nameless. It is hard for me to believe that at one point I was up to about 20 pills a day. This past weekend, I decluttered my house for the new year. I have also “decluttered” my medicine regime. I decided what drugs did I literally, actually need? And, what meds was I taking simply because they were prescribed to me? This was a great thing to do, for myself and my health.
But, I think that the Chiari surgery went well. For those who do not remember, I had brain and neck surgery a year ago – a duraplasty and laminectomy. It was scary but I think that it helped greatly! I am still gluten-free for the Celiac but oddly a lot of gluten-free foods have been making me sick lately. I’m not quite sure why. I have been having allergic reactions a lot, mostly to perfumes, and things that smell. (One incident with a reaction to scented hand sanitizer even led me to get escorted off of an airplane right before we took off! Sorry to all who were on that flight from Newark to Pittsburgh….) so I may start taking my allergies more seriously. I do not take medication for anxiety, but, it’s still definitely a part of my life. I was also diagnosed with body dysmorphic disorder which relates to anxiety sometimes and can be prevalant, interestingly, in people with chronic illness. I don’t do anything to treat that, and, I’m no doctor, but I’m not sure that I agree with the diagnosis. Lastly, I’ve been having foot problems, so I’ll start the year off meeting with a podiatrist for the first time. I also will soon follow up with my endocrinologist and gastroenterologist.
It never ceases to amaze me how those of us with these kinds of conditions see so many specialists, and have so many doctors appointments, and try so many treatments, and yet, the world still often doesn’t understand that these illnesses can be severe. Why is that? In 2012 we should try to raise even more awareness, squash misconceptions, educate the public, and do away with the stigma attached to being chronically ill. After all, it isn’t our faults so why judge us for it?
That being said, I read a great blog post recently by RA Guy that reflected a post that I wrote in 2011. The general idea behind it is that, while we should advocate and spread awareness, we should not fret or worry ourselves if people “just don’t get it.” We don’t NEED validation from the outside world. Yes, compassion and empathy and understanding would be nice, but we can’t expect every person to understand the magnitude of what we deal with on a daily basis.
And that’s OK.
So, did any of you make any New Year’s Resolutions?
I did, even though it’s a little cliche and most of us don’t stick to them! I vow to be more mindful and more present, to keep a daily gratitude journal (I used to, but began slacking), to get healthier with food and diet, to exercise more when I can, and to continue on my path of helping others and positive thinking. Goals of mine are to get on to the Anderson Cooper daytime talk show, “Anderson” to advocate for us; and also to collaborate with the Born This Way Foundation (founded by Lady Gaga and her mom) to speak out about bullying that those of us with invisible illness or a disability may face or may have faced in our lives.
I’d love to hear updates on all of your health situations, as well as some favorite memories of 2011 and goals as we move ahead to 2012. So, please, Leave a Comment!
Thanks for reading and Happy New Year!
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((* Sidenote: Just hours after writing & posting this blog, I ended up needing to be taken by ambulance to ER following my infusions due to a “cardiac episode.” Not sure if the incident was related to the infusion, but I had tachycardia, hypotension, and low potassium a.k.a. hypokalemia. Better than what they thought at first which was — yikes! – a mild heart attack. Better add cardiologist to that list of docs that I’d mentioned needing to see as we start of the new year! ha ha. An interesting start to 2012…I now have some kind of virus, too. Don’t know if the cardiac episode and/or virus were from my biologic, or just coincidental timing. The heart thing may be POTS. Don’t know yet…will keep you all posted!))