Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

The "What NOT to Do" Conclusion

Written by Katie. Posted in Challenges, Favorites, Memorable Experiences

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Well, I do have to say that persistence does pay off.  I may have overreacted a lot bit, but not knowing to me is the WORST.  If I know I have something, then I can start to deal with it, but I do not do well with the waiting game.

I did not get a call yesterday and stressed, and cried, and prayed, and slept fitfully throughout the night.  I felt like I was back to the summer and the fall, waiting, and waiting for answers.  Thankfully, this morning I was called with the answer I was looking for.

Backing up, in November I was diagnosed with EDS, type 2/3 in Fort Wayne.  It was suggested that I have genetic testing done to ensure that I do not have vascular (type 4) EDS.  I had to wait a month to have my blood drawn since it took my insurance time to decide if they would approve the testing to be done.  Apparently the genetic testing is extremely expensive, but if a gene abnormality is found, then family members can be tested very cheaply.  Well, my insurance got back to both the doctor and me and said they would pay 100% of the testing.  So, at the end of December, when I was in Fort Wayne for nerve blocks, I stopped at this doctor’s office and also had my blood drawn for the genetic testing.  I was told that it takes a long time to get the results back, so to not worry if I do not hear anything for a while.

Well, that brings me to yesterday’s freaked out blog post.  Realizing that it had been 3 months, I decided to call the office and check to see if they knew when my results would be in.  Well, the lady I talked to looked up my chart and told me that the results were in, and I needed to come in for a results appointment, as she told me in a matter of fact way that it was in regards to the type 4 EDS.  As I became increasingly sweaty and nervous, I asked, in my calmest voice, “Okay, when can I come in?”  Thinking it would be soon, she proceeded to tell me that the doctor did not have an opening until April 28th.  

That date made my voice grow increasingly less calm.  I said, “Well, I am from Michigan, and is there any way the results can be read to me over the phone because that is a long time to worry about this?”  She said that they do not usually do this, but she would give the message to the doctor and someone would try and call me back that day.  She said that if the doctor couldn’t read them to me over the phone, then they would have to keep me on for the 28th. 

So I waited. And I worried. And I freaked.  And I cried.  And I got irrational and began spouting off panicked thoughts such as… needing to write a will tomorrow, that I’ll never be a mom now, wondering if I would have a brain or a heart aneurysm in the next few years…
I am embarrassed to admit this but I even went so far and told Brad that I wanted him to remarry. 

See what no answers do to me?!  See why I see a shrink?! 🙂 As Dr. Rosen would say, my emotional brain definitely overtook my rational brain. 

Anyways, no one ever called.  So that made for a LONG night.  I decided that I would give the office 24 hours before I called again.   

I just so happened to have a Dr. Rosen appointment today so I got up and got ready for that, going through (in my mind) what I wanted to tell him, and what I thought Dr. Rosen would have to say about all of this…I followed my typical morning routine and caught up on all my emails like usual before I left for my appointment.  One of my emails was a forward my Uncle Steve had sent me that read,

Subject: Fatima- 90th anniversary
Subject: 90th Anniversary

Today begins the 90th Anniversary of the apparition of the Virgin of Fatima:  When you receive this email say a Hail Mary and ask for a special favor.

“Hail Mary, full of grace.  The Lord is with thee.  Blessed art thou among women and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death, Amen.   (your request)

Please do not break the Novena – send it to 12 people, if you can, who you think deserve justice, peace, love, health, prosperity and truth.

When you are down to nothing, God is up to something!!

I do not usually “forward” many forwards but for some reason this morning I forwarded this one to 12 people.  I said my Hail Mary, and I am sure you can all guess what I requested and prayed for. 

I am not kidding you~It was not even two seconds after I hit that send button that the doctor called me to give me results.  She said she cancelled my April 28th appointment because she was calling me to tell me that I was negative for type 4 EDS.  Of course I cried and thanked her.  She said she would be sending me the results and asked if I needed anything else.  I told her I would call if I thought of anything but that answer was what I was looking for.  So basically, I am still diagnosed as a type 2/3 EDS’r.  I then called Brad, my parents, and my sister since they had to take turns last night calming me down.  I proceeded to then go see Dr. Rosen, because as you can see I still have a LOT of work to do 🙂

Oh, and one more thing.  I realize that Brad and my parents are saints.  I definitely don’t make it easy on them sometimes. 

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