Hello blogger friends and welcome. This my first post for the Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.
I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m just going to answer the first question since it basically covers everything.
1. What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities?
I suffered a sub-arachnoid hemorrhage (hemorrhagic stroke) in November, 2011 and a subsequent ischemic stroke during brain surgery. During my month in Lehigh Valley’s Neurosurgical ICU, blood test results came back positive for TTP, or Thrombotic thrombocytopenic purpura, which is a blood disorder causing small clots to form in little blood vessels around the body. It was idiopathic in nature, presenting after my hemorrhage, and thankfully resolved after six months of plasmaphoresis treatment through a central line in my chest.
Prior to my bleed I had two incidents just months before where I was injured. In August 2011, I was injured at work, rupturing my right ACL requiring surgery and in September 2011, a drunk driver thought it was OK to drive over twice the legal limit and slam into the back of the vehicle I was driving. I fractured my L2, L3, and L4. I shattered the driver’s side window with my head. The CT scan at the ER that night came out clean, but to determine any growing bleeds or aneurysms, they’re basically useless.
I am now on Social Security Disability until I can be well enough to work again. Since EMS was out of the question for me, I was promised an office position at City Hall when I got better. ‘Take your time, when you’re ready I’ll have something here for you’, the Mayor said… Now I’m jobless. Gotta love politics, don’t ya? That’s a blog post for another day…
I survive on my SSDI and Medicare A and B. I’ll have to look for secondary insurance because I’ve lost that too, and prescription. I see a neurologist, neuro-psychologist, rehabilitation doctor, pain management doctor, and my primary care physician. I just started seeing a psychiatrist because of the worsening depression over losing the job I struggled to get back. I’m on an anti-depressant and a sleep aid that I use only when I really can’t sleep.
I suffer occasional focal seizures secondary to the hemorrhage; my last seizure was in July, hopefully I can stay seizure free until January so I can get my license back. I suffer chronic pain and left sided neuropathy daily. Some days are more tolerable than others. On my worst days, my left side, particularly the arm and my calf feel like they’re on fire. I’ve managed to remain on a low dose Fentanyl patch for the past two years, and low dose muscle relaxer. The Cymbalta does a pretty good job with the neuropathy, but I’m going to start working on meditation once my cottage is a little more organized.
I’m going to be focusing more on me now and what the future has to offer. The past is the past and I cannot dwell on what has been and who’s done what. These past three years have taught me some valuable lessons about life, people, family, friendships (or lack thereof), generosity, greed, corruption, and true kindness.
Thankfully, to my knowledge, none of my loved ones suffer any disabilities.
I am not going to allow this bump in the road of my life stop me from moving on. I know as I continue to regain my strength, surround myself with a positive network of people, and keep doing the things that will bring me happiness, including going back to work one day – I will be fine.