Depending on the disability you have, how it affects you, and your current health status; there can be numerous downsides to it. For me, I can’t really get around too well, and traveling is extremely difficult. I am wheelchair bound as a result of having Spina Bifida at the T-12 level. I wasn’t in a wheelchair until I was sixteen years old, when I had surgery for a tethered spinal cord. It’s a very long, traumatic story, but the point of it is that I cannot walk any longer as a result of complications with the surgery and my spinal cord being tethered again. Que sera sera.
Along with being confined to a wheelchair, I have also been diagnosed with Rheumatoid Arthritis. I know y’all have seen all those new, innovative, injectible, extremely immune system suppressing treatments for RA being advertised on television , the internet, and in magazines. Well, I can’t take those because my immune system is already so suppressed from my disability, being on so many antibiotics over the past 25+ years, and having many surgeries in my lifetime. Those cutting edge, new treatments could suppress my already suppressed immune system so much that I could contract an otherwise treatable infection that would most certainly be fatal for me. So, I am limited to the more old fashioned treatments of DMARDs (disease-modifying antirheumatic drugs) and steroids, like Prednisone and Cortisone shots directly into the joint (if you’re thinking ‘ouch’…you are correct; those hurt). While all of that isn’t the most effective in treating my RA symptoms, it is the best my Rheumatologist can do under the circumstances. I am just incredibly thankful to God that she is my doctor and that the medications I am able to take are available to me.
I just want to switch gears for a second and say something about my reference to God in the above paragraph. I am a Christian. I believe in God. I believe that Jesus Christ died for my sins. I believe that without the love of God, I would not have the kind of medical care that I do. I believe that without God, the types of treatments and medications that I can utilize for my ailments might not be available to me. Without God, I believe that I may not have the incredible family and friends that I have, or the amazing caregivers I do, that allow me to live independently with my cat.
If you do not believe the same things that I do, that is your right. No one is forcing you to read this blog, so you can stop at any time. However, if you do not believe the same things that I do and choose to continue reading this blog, bashing my religion, personal beliefs, or God in general, will not be tolerated. If you have a legitimate question about my religion, personal beliefs, or God, feel free to ask away. I am always happy to answer any questions you have, to the best of my ability. The same also goes for questions about my disability or autoimmune disorder. Now that I have covered that, back to the original point of this post.
One of the surgeries I had two or three years ago, involved removing my left hip. A few months before the surgery, I developed a sore (as I am prone to do). My plastic surgeon performed an operation to close the sore, and after a few weeks in the hospital and in rehabilitation (I’ve never understood why they like to put me in rehab after these kinds of surgeries. It’s not like I can actively do therapy being on bed rest while the wound heals or anything) I was sent home for more bed rest. While being on bedrest at home, the surgical wound opened up (as typically happens with me) and the sore got worse than before, as it tunneled up in to my left hip. This caused me extreme pain in my hip, which is really saying something because I am a paraplegic from the waist down. You know the pain scale doctors and nurses ask you to rate pain on with 1 being the least and 10 being the worst pain you ever felt? Well my pain hovered somewhere around a 9 or 10.
As a result I was put in the hospital earlier than had been planned. The surgery to close the sore again and remove my left hip happened a week earlier than was scheduled because I was in so much pain, and I was already admitted to the hospital. My hip hurt so badly because not only had the sore tunneled up into my hip, but it was also infected. So my orthopedic surgeon removed my hip socket. There wasn’t much joint ball left since my hip came out of the socket when I was nine years old, and by the time that was discovered, the ball and socket of my hip began to disintegrate, so the surgeon put my hip back in the socket using a metal plate and five screws. Unfortunately, when this sore and infection happened, the plate and screw were just surfaces that the bacteria could grow on. Since I am in a wheelchair, but spend much of my time in bed due to severe pain, there is no reason that I need a hip socket and joint. So I don’t have a left hip anymore.
While that took care of the hip pain, and helped take care of the infection, it created it’s own set of difficulties. Mainly that I am at a greater risk of breaking my femur if I were to fall while transferring, or fell out of my wheelchair. The fact that the medications I am on are causing me to gain weight doesn’t help anything either, but there’s really not much I can do about that. Besides, I would much rather be fat but have my symptoms controlled as well as possible than be skinny but miserable. There are some people in my life who don’t understand that, and hint about me losing weight or “just wanting me to get weighed for a baseline” (which is complete bull btw); but none of those people are a doctor. Those people are actually one person, my supported living coach, and as a general rule I ignore her when she starts going on about things like that and me needing to get weighed “just to have a baseline.” A baseline weight would do nothing to help or hinder me in the slightest. There is also the fact that I have heard from my caregiver that she wants to get a weight on me to see if my medications are causing me to gain weight. I have absolutely no reason to think that my caregiver is lying to me about that either. If that is the reason, I would much rather have my supported living coach say so than to come up with something like a baseline weight. The reason that a baseline weight would not be helpful for treating me is because the only time I need to be weighed is when I have surgery or am admitted to the hospital. Anytime I am admitted to the hospital or have surgery, I am weighed either on a wheelchair scale or by the bed I am on. That is neither here nor there though.
As we’re approaching the holidays, I am reminded of one of the hardest parts about being largely homebound with no vehicle that can take me to where holiday festivities are at- my parents’ house. Not being able to be as directly involved in even he smallest things is difficult. In October it’s my nieces and nephews decorating pumpkins at Mom and Dad’s house. I used to be able to transfer (before my surgery to remove that hip) and be in my wheelchair long enough to go to these sorts of events, but not this year. If it wasn’t for Facebook, I never would have even known that was happening today, since no one even mentioned it. It may have been because I would not have been able to go over there, but there is something about seeing pictures on Facebook and learning about some event after the fact, that makes me feel even more isolated than I already am. I know it sounds silly, but even being told about family things that I cannot attend before they happen makes me feel more apart of those things and less isolated. Most people, I know won’t understand that because they can get out and do things. They get invites to things because they can actually decide whether they can attend or not. Me though…I can’t attend whether I want to or not, so whatever event it is, isn’t even mentioned to me. Now I’m told that I will be able to come over for Thanksgiving and Christmas…providing that suitable transportation can be found for me.
That’s enough of me mourning things that I have no control over. I trust that God has some plan for me, and that I won’t be left out of family gatherings forever . I was able to do something fun today though. It’s a well known fact that one of my favorite past times is to watch sports. it is currently college football season, and I rather enjoyed watching FSU beat NCState 49-17. Right now, Ohio St is playing Penn St and is leading 14-0. I’m not nearly as invested in this game as I was the previous one. I’m only keeping up with the cliff notes version online, as a matter of fact. Really, I’m watching some movie about the sinking of Battleship Bismarck. It’s a decent movie so far. I’m at the part where the Hood has been sunk and Bismarck is steaming for Nazi occupied France to be repaired. The planes they use in the movie are the same ones that, as I’ve seen in documentaries about this massive battleship. The Swordfish Biplanes make me giggle though- they look like shooting at them with a peashooter could tear them apart! And the Catalina Flying Boats…I have never seen anything like them!
I have written myself out here and am going to go back to watching my movie now.
Until next time,