The 2017 Rare Disease Day Countdown Calendar this year asks that we share a personal story with Rare Disease Day on social media, our blog, or even with or to a colleague or friend.
I wanted to follow the calendar closely this month. I wanted to participate to the best of my ability. I won’t be able to participate in everything, but I realize it isn’t how many times we participate, but that you find some way to participate.
I didn’t count on losing my uncle this month. Uncle Donald was a wonderful man who has lived with paraplegia due to an auto accident some 36-years now. Everyone who loved him and his wry sense of humor will miss him.
I didn’t count on severe fatigue and pain. Today a flare of peripheral neuropathy, caused most likely by autoimmune problems. My entire left side is tingly and numb, including my face and ear. I feel it’s more of a chronic nuisance than anything else, still, I should check on these new symptoms. I haven’t had the face numbing effect before. My guess is it’s a new symptom of the neuropathies.
Once, my daughter was dismissed from a general practitioner’s office. I called the office because I learned he’d brushed her face with a handful of medical bills. These were bills I was helping her to pay. Dr. Pence defended himself by saying he was trying to teach her to be financially responsible! As far as I know, this is NOT something you want your doctor to do. It’s also NOT part of a doctor’s oath to practice medicine. I later went in and paid off the bill to avoid any more such behavior. Unfortunately, as soon as they had the money, the office sent her a letter telling her she would no longer be seen. My daughter did not have insurance and we had to pay cash for her to be seen at all.
My daughter, whom I’ve posted about before, was diagnosed with rare diseases and conditions that take a toll on her adult life. These problems threaten her livelihood. She cannot work. In my daughter’s case, as well as my own, a huge problem seems to be the lack of awareness and the lack of funds for research for answers, and for programs who know what people face and are advocating for them. Then, of course, there is still a stigma attached to persons with disabilities. This may seem to many to be unfair, but this is what people with disabilities live with all the time.
Money, Money, Money!
My daughter has been sent to see many doctors. This doctor referred to her another doctor and department, who then sent her to another, and round and round it goes. The money pours out, but no information on dealing with her illnesses comes back to her.
We’ve received many false diagnoses. She has been to see cardiologists, dermatologists, hematologists, oncologists, general practitioners, specialists of all kinds. In this nearly four-year merry-go-round, she still has no clear-cut road and is still on her journey to live a good life without pain, suffering, and symptoms with no cure. In less than one year in 2012, she had accumulated more than $300,000.00 in medical bills. Four years have passed, and still, most of the medical profession continues to treat her like a ping pong ball. If you don’t know, tell the patient you don’t know. We sign paperwork saying we won’t hold you responsible because you’re human…yes, we understand humans make mistakes, but if you’re human, and you can’t help, please stop sending us on treasure hunts where there is no treasure.
Monetary and emotional cost of having a disability and rare disease
Adding 1+1 = double the negativity factor doubles the stressors. Even with insurance, you sometimes need to decide what you can live without, how can you downsize to afford healthcare. People with chronic disabilities know this all too well. Even with insurance, you sometimes need to decide what you can live without, how can you downsize to afford healthcare. People with chronic disabilities know this all too well. The majority of us do not have unlimited funds to spend on healthcare. Also, it’s one thing to have a medical problem, but when you are faced with multiple health-related problems you start to get into a sticky area where there is a specialist for everything… so many specialists. It becomes like the old cliche’ of ‘passing the buck.’
We need a life saver folks. We need research.
My daughter and I are different. I wake up each day with my boxing gloves on and she wakes up unable to find her boxing gloves. I try to help her when I can. We all have different abilities and disabilities. Early on my daughter was diagnosed with a learning problem. She is a really smart gal, but she had difficulty with her focus. She hears everything at once and has trouble zeroing in on one specific thing at a time. She is easily overwhelmed. She didn’t ask for her rap sheet of medical issues no more than I asked for mine. I help her when I can, but when there are no answers, help is hard to find.
The Rare Disease Day slogan is ‘With research, possibilities are limitless’.
I write about disability and I’m dismayed by how limited the resources seem to be, even among those places who say they support awareness issues. February 28th is Rare Disease Day and while we advocate for #CuresNow, I am asking everyone to take ownership of a small part of how our world works today. Know that we have far to go before solving the problems in our health care systems, our children’s education about disability, and getting all people on the same page about diseases, disorders, and disabilities. I believe all people should be treated equally, and advocated for as human beings regardless of their disability.
You may be thinking my post is a bit erratic today. I’m sure it is. I’m not quite focused. I’m having difficulty feeling my fingers, and the searing pain below my left shoulder in the back is nearly more than I can take. No, more accurate is it is more than I want to take. Posting today is important for me, and I’d like this month to be important to everyone else as well. Valentine’s Day on the 14th is for love, and the last day of the month is also for love. Remember this. And remember that without research, there can be no cure. Please check out all the information you can on Rare Disease Day US 2017.
Rare Disease Day US
Rare Disease Day Official