I wish that for just ONE day doctors, nurses or anyone that doesn't believe someone can be in so much pain could be in my shoes....just for ONE friggin day.
I'm not going to sit here and make this a "oh no, I'm so sorry" thing. I'm letting out all of my anger, sadness, whatever.
Being an Ehlers Danlos person is not easy. You go to the doctor and you tell them you are having pain. They immediately give you this look like, "How can you be in pain, you don't look like your in pain." I had that happen to me last night. I'm going to put it out there that this doctor I saw was a BIG jerk.
I always make sure to mention to doctors of any kind I see that I have Ehlers Danlos. Being an Ehlers Danlos patient, the pain IS more difficult....the pain tolerance is low. I would have to say that about 75% of the doctors (if not more) I say this to look at me and say, "What is that?" It's truly sad that these people got an education for 10+ years (maybe less and maybe more) don't have a single clue what this is.
I have my good days and I have my bad days. I'm fragile....I'm not going to lie. Being an Ehlers Danlos patient absolutely sucks. I don't sit and dwell on it as much as possible, but its on days like today that I'm REALLY angry that I have this. For the past 2 weeks I've had muscle pain in my back. However, in the last few days it has gotten a lot worse. I'm in constant pain, I don't sleep and I'm down right cranky. Not going to lie. I'm not a very bearable person to be around when I'm in pain. I feel like someone has taken a Mack truck and run me over multiple times. I can hardly move. It's downright ridiculous that at 27 years of age I feel the way I do. I know that there are people out there that have many things worse than this, but you have NO idea what I'm feeling. NO idea. That is what makes me angry. No one truly knows the pain that people feel. I would always hear about someone that had something like Fibromyalgia or MS....I would feel sorry for them to an extent, but wouldn't believe they were in a lot of pain. Now I do. Having Ehlers Danlos has put my thoughts at a completely different perspective.
What is Ehlers Danlos you ask? Well, its quite simple, yet some what complicated. There are no true tests out there to prove you 100% have this. You can't have a blood test, MRI, X-ray, CT Scan...nothing like that. It IS genetic. Ehlers Danlos has different types. I, unfortunately, have the type known as Elasticity of the joints. Yep, that's why I'm CONSTANTLY having surgeries and in pain. My ligaments and tendons literally stretch on a constant basis and they eventually get to the point that my joints aren't safe anymore, they just start getting more and more prone to injury (hence the knee surgery). I also have to go in for frequent ultrasounds (can't remember the medical term) on my valves of my heart. The reason for this is because SOME people do end up having widening of the valves. I definitely don't want this to happen, this would be horrible. So far so good on the heart aspect. I am more prone to hernias (hence the 4 I had repaired a year ago).....I also can break easier. The pain of an Ehlers Danlos patient is hard to manage. I live with it, I don't generally take anything unless I DESPERATELY have to (like now). There aren't many things you can do for a person with EDS.
I was the type of child in my teens who would be having a great time playing softball or basketball and BOOM one swift move and it was ALL over. No more sports for me.
I didn't find out I had EDS until I was 23 years old. Had I known before this I'm sure things would be a lot different. I would have had an answer to why my body falls apart and why I'm always in pain. I live with it EVERY day of my life. It does get depressing at times because I do have a husband and 3 children. I can't run and play with my children for fear that I might injure myself worse than I have before. For goodness sakes people I broke my ankle stepping off the steps, I cracked my knee cap getting out of the dang shower.....it's ridiculous.
So, the point I have is, until you've put your feet in my shoes, don't judge me. Don't sit there and accuse me of being a hypochondriac. It's ridiculous what you hear people say and the looks that you get when you walk into an office or you are talking to a nurse. Absolutely ridiculous. I do NOT wish this pain on anyone. I truly don't, but I must say that until you've felt the pain I have....keep your mouth shut. Accusing me of being a "drug seeker" (I believe that was the term that was used by someone recently) get your damn facts straight. Until then KEEP YOUR MOUTH SHUT (I say again).
I've said my peace......if you read this, awesome, if you didn't well whatever.......
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