So, pain... I have a bit of a knack for metaphorizing (is that a word? Well, it is now) emotional pain. It's central to my life. It's all day, every day, influences and underlies everything I do. Emotional pain I get.
But this post is about physical pain y'all.
Ho-ly CRAP.
Turns out I likely have a fun fun fun connective tissue disorder called Ehlers Danlos. A few months ago someone set fire to the low-lying-I'll-just-ignore-it pan in my back and joints and put sedatives in my drinks.
Lets back up a bit so we can do that fun pan in thing movies always do.
When I was about 13 I blocked a shot in a basket ball game and ripped all sorts of muscles in my left shoulder. As a result I was immobilized and had to sit out two weeks of basketball games. At this point in my young life that was maybe the worst thing that could have possibly happened so when I was finally allowed back on the court I emphatically insisted that I felt fine, my shoulder was fine, everything was just fine, peachy in fact.
It wasn't. I managed to hide the pain until my shoulder started randomly falling out of "socket" (the quotes are because the shoulder isn't a true ball and socket and I'm a scientist and I just can't) and my mom was like "um, no." Long story short I had to have my rotator cuff surgically repaired then spend 6 weeks completely immobilized in a "gunslinger" brace (imagine the most obvious back brace you can then add and equally bulky arm piece sticking straight out at a 90 degree angle with an oldschool video game stick at the end; yeah I was cool) then three months learning to move my arm again. I started practicing again before I was released and less than a year later had torn the other shoulder (repeat above surgery, super sexy brace, and PT) and then quickly retorn the first.
All that to say upper back/shoulder pain was pretty much the norm for me. From that first injury on I don't remember my shoulders and back ever not hurting. It was my normal.
Follow this with bursitis and tendonitis in my knees (which I wrote off to being a runner), a slipped/bulging disc in my lower back, temporomandibular joint disorder (my jaw locked down completely about two years ago), and "flares" when every thing hurt so bad I couldn't open a pickle jar occurring with increasing frequency and I probably should have clued in that maybe I'm not the normalest human physiologically.
Turns out I'm not. After two solid weeks of hurting so much at the end of the day that I could barely participate in getting my kids into bed I broke down and talked to my doctor. My likely diagnosis (pending testing and consultations with, you guessed it, a battery of more doctors) is Ehlers Danlos and Mast Cell Activation Disease (maybe I'll write another post about how my food sensitivities nearly put me in the hospital a few years ago but I'll spare you now).
I had never heard of these conditions, like ever. Last week we went on the Rainbow's doctors world tour (we saw 4 doctors in 7 days in 4 different towns and 2 different states) and it came up TWICE! New neurosurgeon (talking to me) "I was looking at your hands and was going to ask if anyone in your family has Ehlers Danlos." After leaving I realized I was too distracted by the on-going discussion about possible cranial surgery on my 3 year old to ask him: "My hands? Whaaa?" because in this context we were discussing the likely possibility that my Rainbow shares this shitty condition.
Oy. with the mother friggn. poodles. al-ready.
Oh... and the Chiari Malformation... I may have that, too.
You know what that means? That means that these two debilitatingly painful, dangerous conditions came from me. It means that I gave him this and now I know how painful it really is. I can now look back and see so many times that fit perfectly. So many weird dislocations and subluxations, so much damn pain... I gave it to him. There is no cure, only "pain management."
All I want in all the world is to protect my children an my very DNA poisons them. Sounds so dramatic but, for the love, it's true and it hurts and it sucks and I'll be danmed if he is going to hurt like this his whole life.
For the eleventy-gazillionth time she thinks "Why didn't I go into medical research!?"
Signing off from my bed where I am propped up on 6 different pillows so I can whine at y'all from the perfect angle.
Until next time...
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