The Beautifully Disabled

[thebeautifullydisabled]

Back From My Hiatus

I know it must seem pretty irresponsible of me to start a blog one day and go MIA the next. OK, granted it is. But I can promise you it was not intentional. I didn't know how severe my symptoms were as I wrote my first post. Especially because I'm used to being disregarded which I'm sure anyone with a rare disease or chronic illness can relate too. So, I kept typing through the labored breathing, hot flashes, and cold sweats eagerly anticipating pressing the post button. 

I finished feeling both relieved and exhausted when my nonchalant cousin said I looked “off“ and suggested I call the doctor.  I really didn't want to because I've grown accustomed to feeling like crap. It's just a part of life for me. Thanks to DM I’ve grown an extreme tolerance for pain and discomfort. Can you relate? I bet you can!

Anyhow, I did because his concern was concerning. It was after-hours so, I spoke with the on-call MD. I explained my symptoms. They consisted of lightning in my eyes, dysregulated body temperate and blood pressure fluctuations, not to mention labored breathing and chest pressure.  My BP was 144/92 one minute and 90/57 the next. But, he was insistent I had a bug and needed to sleep it off. He was confident I’d feel better in the morning. Disregarded as usual. And off to bed, I went. Miss sleeping or tossing and turning beautifully disabled. 

The next morning, I felt worse but had to go to see one of my countless specialists. I received a call from my PCP's nurse on my way into Endocrinology. She was calling back because my primary had seen I'd called the after hours line and was extremely concerned with my symptoms because she is well versed in my complex medical history. 

Long story short endo refused to see me because my BP was through the roof and I was sent to the ER with a referral from my PCP. I was being treated within minutes for once and admitted within the hour for left brachiocephalic vein catheter-associated thrombosis. I've been struggling with infections and low-grade fevers since not to mention all the other lovely DM symptoms. But this is the perfect time to get back at this because I am officially off blood thinners. Yes!!! Almost like an anniversary of sorts. I can’t believe that actually excites me. LOL.

I stayed away because I had a great deal to overcome and felt increasingly defeated in this vicious cycle of myositis and battles with other autoimmune illnesses. Which is atypical of me because I am a huge optimist. But it's hard to be positive when you're fighting an uphill battle and keep losing your footing. There's a long and bumpy road ahead as I prepare for cataracts surgery and total thyroidectomy, but I've always loved off-roading, so I'll have to make the most of it.

We all have challenges to face. There's a reason we're called Myositis Warriors. What doesn't kill us makes us more resilient and all the wiser. Best of all, although this is byfar the toughest battle of my life, it's made me appreciate it in a way I never thought I could or would. I see beauty in things I'd never considered before and spend my time wisely because I now realize how precious it is.  Stay strong fellow warriors and know, only the strong survive!

[thebeautifullydisabled]

There’s a lot of misconceptions that go along with the word, “disabled.” What do you envision when you think of it? Do you see someone who is elder, a certain age perhaps, in a wheelchair? Do you see me? Let alone in a wheel chair? Well, the sad truth is, disability doesn’t discriminate, people do.

Trust me. I’ve had judgements passed on me every day for years, good and bad. I used to love and appreciate compliments and now I consider them a slap in the face. Reason being, I have a rare disease. It’s called Dermatomyositis, an inflammatory myopathy effecting those “typically” falling between the ages of 40s to early 60s. I say “typically” because I was diagnosed at 35. But, then again to be fair, it is rare, and I was diagnosed about 15 years too late.

So, back to what you imagined. I bet it wasn't me was it? Next question. What would you image a day in my shoes to be like? Well, I guess that isn’t the fair question considering I haven’t worn shoes much in over year. But, if you had to guess? Would you think I wake up every morning and struggle to get out of bed? More exhausted than when I laid down to sleep? Probably not. Would you believe me if I told you, I struggled to brush my teeth and hair? What if I told you that sometimes halfway through the shower I just want to sit down and give up out of exhaustion. Probably not. Yet every time I go out.

Regardless of where I go. I am judged. I am judged by my beauty. Presumed well by it. Yet, I am on life sustaining treatments because my body is failing me. My medicines are failing me, and society is failing me. But, I am a warrior. I will survive!