I have not written a blog for a few weeks. Part of this was because of the holidays and the general need for relaxation with friends and family. The majority of it, however, was due to an altogether more unpleasant reason. For the last two months, I have been dealing with significant pain in my left leg and hip. I have not talked a lot about this since it started and have remained quiet on social media, but I figure it is time to open up in a blog.
This pain has been the worst that I have ever experienced. Growing up with cerebral palsy I am used to my fair share of soreness, stiffness and the odd tweak. This, however, was different. When it first started, I thought it was merely another bout of the usual aches and pains but soon realized that it was more intense than I have experienced for a very long time. I was basically forced to sit in recline (thankfully, my chair allows me to do this) for the entire day just to get a little bit of pain relief. I could hardly eat because I could not sit up for long enough to do so and was entirely nonfunctional in most aspects of daily life. I will admit that I was scared.
The most frustrating part of all of this was the lack of diagnostic options I had because of my disability. My family doctor, though perfectly pleasant and willing to help, has never properly examined me because his office does not have the proper equipment to transfer me onto the exam table. All he could do was offer me pain medication that did not even come close to taking the edge off. He made appointments for me to get ultrasounds and x-rays done at the local hospital because they are the only ones with appropriate transfer equipment. However, these appointments are months away. I eventually had to spend all of last Saturday in the ER, a full nine hours, just to get an x-ray and CT scan after two months of agony. There are many good things about our healthcare system, but the lack of diagnostic support for individuals with disabilities is truly shameful.
I have since had a new seat cushion installed on my wheelchair that has alleviated a lot of the pain. I had suspected that my seat was the issue for a long time, but much like the health care system the wheelchair seating industry is not set up for responsiveness. There should not be a situation, given our country’s supposed care for its citizens, where someone was incapacitated by pain for two months cannot get the answers they need because of lack of disability support. I am happy to shine a light on this issue for the benefit of others.
They say that pain make you stronger. My pain has indeed made me stronger and has made me realize that I do not live in a truly disability positive society just yet.