HOW I GOT HERE - Part 1

I've decided to break this post up.  It was mostly written in one sitting.  Everything just poured out of me, but I feel it would be better to post this over a few days.  There will either be three or four different posts.  If you're reading this, thank you.

I used to have it all.  The first two years of high school I was a football, basketball, and competitive cheerleader.  I was in marching and concert band, choir, and two school musicals. I was secretary of the drama club, a member of student counsel, and the on dance committee.  I also did pointe and tap for year and a half.  I was a classic overachiever.  I studied like crazy.  I got mostly As, a few Bs, and one C.  I thought my future was over because of that C in geometry.  At the time that C was my biggest hurdle.

In 10th grade I tore ligaments and tendons and broke bones in my left wrist and hand.  I was a base, a person that holds or tosses others in the air while cheerleading.  I used to be a flyer, the one in the air, but I had to stop because my knees were too weak.  I'll never forget the moment when my wrist popped. I brushed it off at the time because I was always hurting myself cheering.  We all did, although I was known as the one that was always injured.  That night I finally admitted that something was wrong.  Nine casts and one surgery later, I still have issues with my wrist.

Looking back, the wrist, knees, and ankle issues while cheering, dancing, and doing marching band were one of the first big warning signs that my life was about to change.

In 11th grade everything went downhill.  I was always sick as a kid.  I usually missed about 30 days of school each year.  I'd have things like heart palpitations, fatigue, and recurrent infections, but now I could barely hold my head up.  I was passing out whenever I moved.  I'd roll over in bed and black out. My heart was racing and beating out of my chest.  I was in so much pain.  I ended up using a wheelchair.

After trying to use a chair at school and usually only making it through a class or two a day we decided that it was best for me to leave and go on homebound.  

Not only was school physically exhausting but mentally it was hell.  I was known as the hypochondriac.  I had to be making everything up for attention, right?  I couldn't get a diagnosis so that must be it!  I remember a friend telling me that someone had asked my homeroom teacher why I was always gone and she responded by telling my whole homeroom that I had mental issues and I was just trying to get out of school.  She said if everyone ignored it maybe it would help it go away.  My biology teacher was just as bad.  He got my phone number off of a former friend and called me.  During class.  On speaker phone.  He demanded an explanation on why I was never in class.  I was mortified   I just hug up the phone and cried.  Even though my parents and my homebound instructor went to the principal and superintendent they did nothing.  They said they'd talk to my homeroom teacher.  I don't know if they ever did. 

My homebound instructor was one of the most remarkable woman I have ever come across.  I truly believe if it was not for her, and my parents, who luckily all believed that I was not doing this for attention, I would have given up.  I cannot thank them enough.  I may have been struggling with my health biologically, and now my mental health because of what was going on at school, but I was blessed with three amazing people who never gave up on me.

Doctors didn't treat me much better than everyone at school.  On two separate occasions, two different neurologists, at two unaffiliated hospitals told me all of my problems were psychosomatic.  They had no idea what was wrong with me so that was it.  They took the easy way out.  But the worst was when a doctor told my mother that she had Munchausen by proxy.  My parents were my support team.  They never gave up on figuring out why I was like this.  We went from doctor to doctor, from hospital to hospital.  Maybe they thought my mom pushed too harm, but she was doing so to help me.  We needed answers.


In 2006 I ended up graduating, and walking, with my class.  For awhile I didn't think I'd graduate with the people I'd been going to school with since first grade. I somehow got in to my first choice college, even though I was homebound for the last year and a half of high school.  I still have no idea how that happened.

That fall I started at my dream college and majored in Behavioral Neurobiology.  Finally everything was going to work out.  This was the new beginning I needed.  I was going to get Bachelor's and go onto medical school.  Obviously my life didn't go in that direction.

I left school after three weeks and moved back in with my parents.  I was a failure.  Everything I'd planned was crumbling around me.  My parents decided we should try one more hospital. We went to Children's Hospital Boston.

To be continued...

DOCTOR'S APPOINTMENTS

There are somethings you just don't want to have to discuss with your doctor. Not because it's awkward, but because the conversation may end up being a major bummer. This is one of those conversations. Today Matt and I spoke to my geneticist about having children. Were already know that there's a 50/50 chance any child we'll have will be born with Classical Ehlers Danlos Syndrome, but there are so many other questions we need answered before we decide if a "traditional" pregnancy is our best option.

Then we were thrown a curve ball. Maybe I don't even have Ehlers Danlos. Maybe it's some other hereditary connective tissue disorder.  Wait, what?

Then there's that chance that I could pass on Transposition of the Great Arteries, the heart defect I was born with. I knew there was the possibly the TGA was genetic.  My parents met a family whose identical twins were each born with it.  But they've apparently found three gene mutations that can cause it.  Lovely.

Three vials of my blood were drawn and and being sent to California to be tested for 11 defects including, Marfan Syndrome, Stickler Syndrome, Loeys-Dietz Syndrome, and the Vascular form of EDS.  There is also a gene mutation known to contribute to aortic dilation that my blood will be tested for.  In 6-8 weeks (or probably longer, since my insurance company is a giant pain in the ass) I will know if anything's been found.  If there are no red flags I'll be tested again for the three known defects that may cause TGA.

Dr. Fancomano said she'd bet there was a 50/50 shot that they'll find something in the first batch of tests.

Honesty, I'm frustrated.  Thousands of babies are born everyday with no issues.  Hell, I read the other day that a 10 year old in Columbia gave birth.  Tons of people who aren't fit to be parents have kids. Yet, Matt and I may not be able to have a healthy child someday.

Yes, adoption is an option, and were not ruling that out, but I want to be pregnant with a baby that has my eyes and Matt's nose.  I'm not even sure that I could emotionally handle raising a child I didn't give birth to.  A few weeks ago Matt's friend, who Grandma's cat is my cat's birth mom, said his Grandma would love to get her cat and our cat back together to see if he remembers his mom.  Without thinking I was like, "she's not his mom!  I'm his mom!"  If that's how I am with my cat child, how would I be with my child-child?  I actually refer to the cat that gave birth to my cat as his "birth mom."  I have jealously issues.

But, I guess there's no need to worry until we know what we're dealing with.  Just 6-8 weeks.