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.

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!

BACK TO SCHOOL

Classes start today.  I'm not too excited about that fact.  I still get that nervous feeling in my stomach at the beginning of each semester.  I'm taking three classes this semester instead of the two classes I took last year. I'm taking Intro to Biology, Intro to Moral Issues, and Society and the Individual.  I;m trying to be as organized as possible.  I'm usually a mess.

This summer went by too fast.  It was an amazing summer though.  We went to Disney World for a week, which is one of my favorite places on earth (we might go there for our honeymoon!). We also went to the Wizarding World of Harry Potter for a day when we were in Orlando.  It was my second time to WWoHP and I love it there.

Even though I wish the school year wasn't starting, I am glad to be back to our tiny apartment.  Matt and I each stayed at our mom's for this past month to save on rent.  Now we're moved back home.  Just me, Matt, and Charlie.

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.