The harsh reality

8/30/2014

 I am part of a support group for my disease but I have realized that with such a rare disease, many that have it are completely ignorant of that is going on inside their bodies, the correct medical terminology, or that they are allowed to see more than one doctor. It absolutely baffles me that people that live with this life-long disease are begging for the research because they state there is "little to none" out there have yet to do a proper google scholar search to even see if this is true. When one demote the scientific terminology to a cute phrase they also demote how seriously others will perceive their disease. I understand that cute phrases help explain it to young children what is going on without freaking them out, but at some point it is necessary to explain everything scientifically in order for them to really understand their disease. Also, knowing the scientific terms allows you to expand that Google Scholar search I mentioned previously. Instead of searching for MHE, one can now expand this search to Multiple Hereditary Exostosis (there is a huge increase of results now). When they've read everything that has come up on that, they can then search key terms that relate directly to the disease like "EXT 1", "EXT 2", "EXT 3", "heparan sulfate", etc. Now the results expand 10 fold.

Like I said, I am a part of a support group and the title of this post is the harsh reality, well I am not very supportive. I am empathetic because I know the struggle everyone is going through but since I know it all too well, my patience is running short for those who do not know about their disease, for those that complain their doctor refuses to do surgery or treat the pain but don't go else where for treatment. If you disagree with the answer given then why keep asking the same person? For example, when my shoulder was completely separated and I knew something was wrong with it and the first doctor didn't do anything about it ,I saw a second, and a year and 6 doctors later, I found one in a different state to do the correct surgery that was needed and guess what?! My shoulder is healed with minimal pain! 

For the second part of the harsh reality rant (for those of you who have made it this far), I am having my 22 surgery next week. It will be a temporary fix for my left knee but it should hold me over until I can find a better surgeon and the time needed for recovery of having my whole leg realigned. I have come to accept that no one cares (maybe a few of you and I am well aware who those few are by their actions). A few may wish me luck in the days leading up to surgery and a few may wish me luck the day of surgery but many will not even know I had surgery until I go to school on crutches the very next day (not even a full 24 hours after surgery) drugged out of my mind just so I don't miss that magic number that is a reason for automatic failure. For 2 or 3 days few will ask how I'm doing and like always I'll lie and say I'm doing fine but let's face it I'm about to have a slightly more complicated knee surgery than what professional athletes have and you won't see them out and about the next day. Really puts things into prospective doesn't it? It also puts them out for the rest of the season, but after those 2 or 3 days I will attempt to start walking again and no one ever asks about the progress or the healing process which is always the hardest. The surgery part is the easiest. Most people are usually asleep, I will be awake the whole time but won't be able to feel my leg. It's when one wakes up after surgery, once the nerve block wears off, once the IV pumping the magical pain medications and nausea medications comes out does the toughness of surgery hit. That's when you get to feel the pain, get back to daily life but a more difficult version, when people forget you live over an hour away from your parents with a roommate that doesn't believe in chores and even after survey will still expect you to do them all. That's when bitterness, rage, and hatred kicks in. Then after a few weeks all those emotions subside along with the pain and agony. You then start to not care, just like everyone else. 

In short I'm having knee surgery September 9th and will be in a horrible mood when I drive myself to school the next day.