HOW I GOT HERE - Part 2

When I was born I had a congenital heart defect called Transposition of the Great Arteries.  I ended up in Boston because they were the only hospital doing a new surgical procedure to correct the defects.  I ended up being the first to have the surgery.  I also was one of the last.  Only two of us survived.  Luckily, after three heart surgeries at Boston Children's (and one at Cincinnati Children's that I had at a few hours old) I have had very few cardiac issues related to the Transposition since.  All because of the wonderful doctors and nurses in Boston (and at the hospital I was born at and in Cincinnati) I was able to live.  My parents also gave me life by researching and choosing Boston.  I also think God had to have played a huge part.  I can't explain it any other way.  My parents, the doctors, the nurses and God gave me a chance to live.

Now that I was having new medical issues Boston seemed like the only logical choice.

In the fall of 2006 my mom and I traveled to Boston and met with the new head of the cardiology department.  He listened to me.  He was the first doctor to truly listen to me in years.  He let me explain everything -  the passing out, the dizziness, the exhaustion, the crazy heart rate, the headaches  no longer being able to walk more than a short distance, barely being to hold my head and arms up, the crazy adrenaline rushes I was having, the constant vomiting, the overheating.  He sat there and listened to everything I had to say for a few hours.  He told us he knew what was wrong.

The next morning I went upstairs and had a stress test.  I failed miserably.  My heart rate sky rocked, my blood pressure bottomed out, and I passed out after a minute or so.  She lady running the test said she'd seen people in heart failure do better than I had just done.  Right after that, and lying down for a bit, I went back to the cardiologist.

He said the test confirmed his suspension.  I had Postural Orthostatic Tachycardia Syndrome or POTS, a form of Dysautonomia.  Dysautonomia literally means the dysfunction of the autonomic nervous system.  I had a diagnosis!  After years, I had a diagnosis!  It all started to make sense!

I was prescribed some medications, including Midodrine, and told to come back in a few days.

I'll never forget the first time I took Midodrine.  We went out to eat after the appointment to celebrate.  Yes, to celebrate!  We had an answer!  We were so relieved!  We were sitting at the Ye Olde Union Oyster House when the Midodrine started to work its magic.  My mom started to panic because of the look on my face.  She asked me what was wrong.  I replied, "the room stopped spinning."  I just sat there trying to take it all in all.  It was incredible.  It didn't entirely solve my vertigo and nausea, but I couldn't remember the last time the world was this still.  I'll never forget that. It was one of the best moments of my life.

The Midodrine, Florinef, and some beta blockers, along with increased liquids and sodium helped some.  It didn't solve my problems but I was satisfied.  I was in a much better place.

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...

I'VE GIVEN UP

I don't know what to do anymore.  I'm at my wits end.  I feel like this it.  This is how I'll always be.  I can't change this.  This is how my life is and it's just going get worse.  It terrifies me.

People used to tell me that they were amazed at how I handled being sick. I did have such a positive attitude  I would smile at the little things.  I was brave. I was not afraid.  I don't know how to get that back.  I used to say, "I'm just dealing with the cards I've been dealt."  Well you know what? Those cards suck. I don't want those cards.  I want a new hand.

I have all of these medical problems and there is nothing to treat them.  I've tried.  But nothing has worked.  I'm willing to try anything at this point.  No doctor knows what to try anymore.

I see so many people trying different treatments, from new meds to infusions.  But no one is willing to try those with me.  I see some of the best doctors in the country for what I have.  But they won't do anything.  Do I have to beg for help?

I know I could be so much worse off.  I really could and I realize that.  I am lucky for where I am right now. I am just frustrated.

Everyone's solution is Vicodin. It works wonderfully for me but I don't want to be dependent on a narcotic   It scares me.  I don't want to deal with addiction.  But I still end up taking it most days.  The pain is just too much.

I do realize my life is beautiful in so many ways.  I am marrying my best friend in less then 100 days.  I couldn't ask for more.  He is my rock, my anchor.  He is kind and patient and understanding.  I cannot believe that e found each other.  The only way I can fathom it is to know that God was involved.  Maybe fate is a real thing.  My parents are wonderful.  We've been through so much crap in the last two years but they are there for me no matter what.  I can call either of them and pour my heart out and they understand.  My dad has Ehlers Danlos and POTS too.  He is one person, along with my incredible cousin, who truly get it.  And my mother is a saint. I wouldn't be able to function with her at my side.  The rest of my family is a blessing also.  My cousin understands better then anyone and it always there to talk to me.  And I have a cat that cuddles me in bed when I am in pain.

I have so much to live for.  I am blessed.  But, I am also exhausted and frustrated.  It's frightening.  What will my life become?  What will my body be like in 5, 10, 40 years?  I don't want to deal with the future sometimes.

MY PAIN LEVEL IS THROUGH THE ROOF TODAY!

Ugh. I am so exhausted.  Maybe being productive yesterday wasn't my best idea.  I need to know my boundaries.

But, I feel like I am being such a whiner lately.  I'm doing all I can to not take pain medicines but I am failing miserably.  I could be so much worse off but instead I am pitying myself.  That has to change.

THIS CLEANING SPREE BROUGHT TO YOU BY...

...Clorox wipes, Doctor Who, and copious amounts of Vicodin!

I never clean. Anytime I have spoons I go out. I feel trapped in this apartment most of the time. Sometimes I need to get out to save my sanity.

I've noticed that my living space has suffered from my being chronically ill.  But, for me at least, being sick shouldn't be an excuse for being messy when I'm not having a horrible day.

But today Matt and I went out to eat, to the mall, to Target, and then came home and cleaned

I haven't been this productive in the longest time.

I scrubbed the stove top to bottom and finally got around to taking down Christmas decorations. Yes, Christmas decorations are still up in the middle if February. I've been too fatigued to even think of taking them down.

I know I'm going to hurt horribly tomorrow. I already do. My neck and back are killing me but this was worth it.  I guess that cleaning was what I needed for my sanity this time.

Also you can see Charlie in the first photo. I think he's trying to figure out why his parents are cleaning...

Now I'm going to eat some gluten free chicken tenders then...clean some more!