Sunday, September 11, 2011

A bump in the road

I want to first apologize, as I haven't posted in two weeks!
I kept forgetting, and last week was the holiday weekend, so I was with the family :)
I have been doing so well the last two months and all of a sudden, I am just not feeling good anymore :/

This Friday I actually had my blood test for VEDS or EDS Type IV (Vascular Type)
I saw the geneticist about two and a half months ago and it took that long for our insurance company to approve the $2,500 blood test! Just to test for this one mutation costs that much! I can't imagine what's going to happen once I am off my moms insurance in the next year...

The test will take 1-2 months...
I hate waiting, that is the worst part!
Chances are, I don't have it - but the geneticist wanted to rule it out because of family history and symptoms I had/have and that my mom has had. I just have that funny feeling in the pit of stomach - I never usually worry about tests, but this is one that really gets me a tad nervous.

I also am very curious as to knew information that I have come across through the Cleveland Clinic.
I was born with a bicuspid aortic valve and my esophagus was never fully developed. 
Upon many doctors visits throughout my life, I have never been able breathe, despite being in great shape and was never given any answers - they always just said "oh it's not your heart" your fine. 
Obviously, I wasn't - My face turned purple and blue and I couldn't breathe (plus I sound really funny when I breathe sometimes) 

Well, I have just learned that BAV(D) Bicuspid Aortic Valve Disease can happen if you have a connective tissue disorder, like EDS (which I definitely have!) and approximately 70% of people with EDS have a form of Dysautonomia (POTS). 

The frustrating thing for me (and probably others out there) is that POTS is thought of as a secondary condition, that happens due to something else that is not functioning properly in the body or another condition! I feel frustrated when we are just given medicinal treatments and a "eh" approach to POTS - Shouldn't they be looking into what is the contributing condition that is making our bodies go haywire?

**Sorry for the mini rant**

Anyways, I haven't had an echo in about 3 years and I am supposed to get one every 2-3 for my BAV, so the next time I go, I want to bring up all this information I have found to my doctor! 
If any of you are curious, here is the website. 

Question Time
  • How much water a day do you try to drink or what is your goal?
    • I try and drink about 4 water bottles a day, however I know that I am supposed to drink more. I also always make sure that at least half of that is electrolyte filled water, otherwise it won't do any good at all
  • What is your favorite food to eat when you are sick, but know that you have to eat something?
    • Well, it's not really my favorite, but I usually turn to banana's as they are the easiest on my stomach. As for my all time favorite food: Ice cream and potatoes :) I agree with you Hannah, what is with the POTS and Potatoes? lol
  • Do you have an underlying condition that caused your Dysautonomia? 
    • I finally got diagnosed with EDS this year - they believe that EDS is the cause of many Dysautonomia's. Interestingly enough though, it was after my wisdom teeth removal that everything went haywire and I became bedridden for many many months. **I have extremely bad dental problems, as my my mom** We can't get numb with their medicines, our gums are extremely sensitive, and we don't heal quickly, and have a lot of other dental issues : / ... 
  •  Do you have a pet?
    • Yes, I have two cats: Chunk & Harley :)

  • What do you do to "escape" your illness?
    • I crank my music (or barely play it, ha) and try to live through the music to drown out all my other thoughts/symptoms. Music is literally my lifeline.
  • What are you going to do for awareness week?
    • I honestly have no idea - I know, that's bad -- but I'm not sure!
  • What is your favorite recipe?
photo credit

    • Fruit Pizza!!! It is my all time favorite dish in the world. Well, almost. But I thoroughly enjoy it :)
    • Crust
    • (or any kind of sugar cookie you like to make)
          • 3/4 cup sugar
      • 1/2 cup shortening
      • 1 large egg
      • 1 tsp. vanilla
      • 1 tsp. salt
      • 1 tsp baking soda
      • 2 3/4 cup flour
      • 1/2 cup milk
    • Topping
      • 1 (8 oz.) package cream cheese
      • 1 tsp. vanilla
      • 1/2 cup powdered sugar
My question: Is there a time in the day when you feel more nauseous or sick than others? I used to always feel sick in the mornings, but now the nighttime is really getting to me...

It seems that we are all not feeling the greatest
Sending you all lots of love and prayers!
<3 Erin

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