In 2003, I was diagnosed with a terminal lung disease that not many people have heard of (including doctors). It’s called Primary Pulmonary Hypertension. Initially, the only treatment available to effectively treat and possibly prolong my life was a lovely tube in my chest that went directly to my heart. The medication that would drip into my body had to be administered 24/7 and oh, here’s the fun part, packed in ice and changed exactly at the same time every day. This is so not the way to live when you are a twenty-eight-year-old single parent to a four-year-old and you make your living as a Corrections Officer.
After I was fired and told that I could only have six months to live. I found myself with no income and looking at $8000 and then some just for the medication—and a little four-year-old’s face. Somehow, I made it through the six months of waiting for Social Security and my body responded well to the treatment because I was able to take out the tube (better known as a Hickman catheter), switch over to just two pills a day, and for the most part reclaim my life. These are just highlights to get to my main issue.
I am physically disabled. I have a hard time going up stairs, have a lower immune system, and cough up enough blood to become anemic when I do get sick. I can’t handle cold weather or wind very well but my mind is fully functional. I have gotten used to and can even overlook the medical profession looking at me in awe when I have to go the local emergency room. I can overlook having to educate them about my disease when I am sick to correct them on the medications I am not allowed to take because they will actually raise my lung pressure and make my disease worse. All of that is fine. I am happy and blessed to be here and able to help them learn.
What I am absolutely fed up with are these non-profit organizations that Social Security will refer you to and sometimes require you to take part in that are not designed to help people like me. I was actually just told today that they can help me write a resume and tell me what to wear to an interview, but that was pretty much it. The person assigned to work my case admitted that I actually had more of an education than she did and that these programs are really for people who are mentally disabled. If I was in a wheelchair, then they could equip my car so I could continue to drive. But just having a lung disease that prevents you from getting out in the elements because I don’t own a car is not enough of a reason to have them buy me a car so that I could also get to and from work like a person in a wheelchair. I had to sell my car because raising a child on Social Security doesn’t leave to much money left over. Then when I go out without any help from a group and get a job, I have a hard time keeping it because when the weather gets bad and it becomes harder than normal to walk to and from the job. I think we need organizations to help people like me. I can’t be the only person out there who just needs a little help to survive a physical disease and we need to band together and do something.
