It’s been a little while since my last post due to recent confirmations in my health journey. My rheumatologist diagnosed me officially with Sjögrens Syndrome about one year ago, but since tests were “invasive”, she felt that my symptoms (being more irritating and less severe) were not worth the risks that came with testing.
Recently, there has been a new test pr0duced, in which a simple blood draw would determine a definite yes or no, rather than the previous “sometimes yes, sometimes no” results.
The confirmation through this blood test of my Sjögrens Syndrome came at no greater time than my “first” Sjögrens flare. All other flares, I feel have been more Fibro related. This flare has been much different. Other than the usual irritating dryness, joint pain, and muscle pain, I’ve had muscle weakness, much more severe dryness (that I feel even in my sinuses), much worse fatigue that brought along heavy eyelids, along with other symptoms that could be Fibromyalgia as well. I have also ended up in the Emergency Room a couple times due to severe abdominal pains that I’ve not been familiar with that felt to me like kidney stones.
With this recent and continual experience in this new and old symptom filled flare, I’ve learned so much about myself. It’s really odd to me that I could learn so many new things about life in general in such a short time that I haven’t run into in my 25 years of life.
Mostly, I’ve learned that when the road gets a little bumpy, you have to find your hope and happiness to hold onto to pull you to a smoother path. Sometimes you have to “white knuckle” it, until you see your happiness and hope in view, and sometimes they’re easier to find. But they’re always there. I promise.
When my sleep evades me, something that I’ve never had an issue with, I reach to my husband or fur babies for comfort.
When my pulse rises from anxiety, in which I’ve never experienced until recently, I put on my “calming” music that I’ve never needed until these moments.
When my sinuses ache from the dryness beneath my eyes, I search for my nasal gel, that I never thought would have existed until now.
When my mouth gets so dry that even one word uttered is hoarse, I turn to my mouth spray, in which I’ve glanced over in the toothpaste isle for my entire lifetime.
When my tongue swells so badly with ulcers and sores that talking comes with biting it if I’m not careful, I grab some “throat numbing spray”.
When my joints pain, in ways that I would not expect until I reached at least 50 years, I reach for my prescription pain relief.
My medicine cabinet would lead you to believe my age to be much older, unless you knew better. Every morning and night, I take a handful of prescription pills, just to get me through the day and the night. I’ve learned that if that’s what it takes to keep me going, that’s ok – there’s nothing wrong with that.
I’ve found that having friends in your life isn’t as valuable as you’d think; but having people who are interested in learning about how they can be patient and helpful to keep you in their lives are worth their weight in gold.
Even though Dr. Phil’s definition of normal, “whether or not it’s disruptive to your life, and whether or not it creates a negative outcome”, does not fit me, I’ve come to be comfortable with the fact that I am ok not being “normal”, because maybe I just don’t want to be.
Even through Celiac Disease, my diet has changed quite a bit more, with the fact that animal meat not only helps to form kidney stones in my body now, but it also simply just repulses me. I’m learning how to get protein from other sources. Dairy is also a not-so-simple possibility now.
I’m learning more everyday. And I look at that as a positive. Things are changing, and like my father has forever reminded me, “the only thing that ever stays the same is change”, I’ve become comfortable with my life changing.
On the website “The Mighty”, one entry simply said it all – the title of the article fits perfectly for me as well, “I’ve Decided I’m No Longer Apologizing for What I Can’t Do Because of My Illnesses” by Amber Hosea. Here’s my favorite quote from her article:
I’d like to believe that I’ve been given this illness for a reason. Whether it’s to educate people about this disease, or to learn a lesson about myself, or hell maybe it’s just that I’m tough enough to take the beating. Whatever the reason, I’m learning to embrace it. Who knows, maybe I’m turning into a superhero. I mean, my body does do things that a “normal” body doesn’t.
Yeah, that’s probably it. I’m a superhero.