Wednesday, June 13, 2012

My internet hasn't been on :(

So...I did not have time to make the video that I wanted. :(  My internet has been down. As soon as it came back on I had to do online college orientation.

My trip went well; although I am exhausted still. Dr. Tinkle was really nice. He diagnosed me with Ehlers Danlos Syndrome type 3 with Marfanoid Habitus (mild physical characteristics of MFS). I am relieved to finally be officially diagnosed. We have been suspecting that for awhile now, but it feels completely different to hear a doctor confirm it. 

He will be sending a plan to my pediatrician. I will be put on heart medication. He was upset that I was not on any. I have to go to physical therapy at Shands. I was told to get fitted for a cervical collar that I can wear when my neck is bothering me. I will also be getting fitted for ring splints. My fingers are doing some weird things. Some of the tips are constantly hyperextended. A couple weeks ago I subluxed one pouring a drink (it got caught on the pitcher). I'm not dislocating them all of the time, but I am getting the ring splints for more of a prevention type of thing. 

Oh! And he told me that I was on way too many supplements. The only supplement I have to take is coq10 and my chewy vitamins. It is not advisable to be on so many supplements with stomach problems because they are a very big irritant to the lining of the stomach. That can exacerbate symptoms. 

As of right now that is about all I know. I will know a little more once the plan is sent to my other doctor. In the meantime I have been busy with school and making appointments. 

Questions and replies:

Hannah: Your post on anxiety/OCD sounds exactly like me! I could have written that post. Hahaha. I am glad that you are overcoming some of it. :)

Rhianne: I pray everything goes well while you are in the hospital!

Miranda: I hope the medication switch helps!
Question: Do you have a geographic tongue?
I do not.  

Michelle: Congratulations on graduating. You have a bright future ahead of you. :) By the way, thanks for the card!
Question: What are y'alls plans for the summer?
I am not doing much of anything. I'll probably be doing school the majority of the summer. I might go to the beach a time or two though. :)

Logan: I'm sorry you aren't feeling well. I have the "almost blackouts" many times a day. They are strange because you only go partially blind. Luckily they aren't quite as bad as the full blackouts. 

My Question: What part of your head are your headaches/migraines located at the most of the 

I hope you all have a good rest of the week. 
God bless.
-Cheyanne :) 

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