Saturday, August 27, 2011

Day 137

So my doctor's appointment on Thursday... as I posted on my main blog, I learned nearly nothing.  The x-rays came back clean which is a good thing, but then my doctor pointed out that because of the way my knee is compared to my ankle, I've got alot of chronic issues ahead of me.

Normally, I just sit and listen when a doctor says something.  Ask a few basic questions about what that means but I can't explain to you what came over me this time.  I am just not accepting what he thinks about the issue.  Which is that I need an ankle brace. 

Seriously, something in me just snapped -anger wise- and I said that I've had to suffer fashion my whole life because of my O.I.  and never been able to wear heels and how lately since this whatever it is injury to my foot; I can't even wear opened toe sandals or anything with a strap on it because of how swollen I am.  Hell, I can barely get an athletic runner on.  Which is what I wear 99% of the time, the rest of the time I'm stuck in very practical winter boots.

This is also why I do not wear dresses or skirts anymore; because my one leg is now misshaped since the last round of surgery.   I feel like the Bride of Frankenstein.

And my doctor, started to say "we'll get you in to some lace up army boots and a plaid skirt like that pop star Avril Lavigne"      Trust me he didn't joke anymore.

So here's me, booking yet another follow up appointment, and trying not to cry on the bus home. I made it to my mother's apartment building just as the tears came.   Angry tears.

Few years ago, in an O.I. support group, the two most common questions people would ask were 1) how do you deal with the weight gain   and 2) how do you deal with the depression

My answer was you just do.  
There are two groups of O.I. people,  the ones who are not diagnosed until they are adults, and the ones who are diagnosed at birth.
I was diagnosed at birth, as were my mother and sister.    It seems to be an easier situation for those of us diagnosed at birth.

You get into a routine.  You know that yes there will be broken bones therefore there will be casts and surgeries therefore there will be hospital stays and therapy.  You know that you could take a year or two recovering from this one injury.  Then you know the next step is getting your life back a little.
During recovery time, you gain weight.  You're stuck unable to move much because of the broken parts, and you end up gaining weight.   Sometimes it's only 10 pounds, others it can be close to 50.
And this is when the depression hits.   And it can hit hard. 

You are alone most of the time, you do not have a social life outside of the phone/tv/internet.
Doctors and therapists are who you see the most.  If you're really bad off, you'll end up with a nurse/care giver few times a week.   You're only real source of company.

It's brutal.

Then you can have a few good months/years where life is nearly normal. 
Depending on the degree of the O.I. - the type you have-  normal can span alot of things.

I have been studied by every med student that has come through our city at some point.  I have shown up in emerg on a few occasion to have five or six different interns examine me because O.I. is a rare thing to get to work on.  I've been nothing more then a human lab rat at times. 

Yes, I'm angry.

No comments:

Post a Comment