Sunday, August 7, 2011

What a week.

 Happy Sunday Ladies & Gents :) we have any gents?

On Monday, I met my new PCP/Internist! Finally, I am one step closer to having my doctors ALL be in the same location! We have so many different hospitals in Omaha, & it makes things so easy when you can have all your information in one place!

I didn't spend a lot of time with her, as I was just establishing new care, but she seemed good. She even said that whenever I need fluids, I can just call the nurse and she will set up a room in the infusion center for me the same day (if I call in the morning). I asked her if she wanted my neurologists slip that stated I could have fluids, and she said "Oh no, that's fine! You just call whenever you think you need fluids and it'll be ready!) WOW! How nice is that?!

I have two new appointments though. Gosh, just when you think you are clear from doctors for even a month, they throw a new one your way! She wants me to get a THIRD opinion regarding my breathing and asthma. My shortness of breath can get really bad and she wants to get another specialists opinion on whether the asthma is getting worse or it's my EDS (as this condition can make breathing very difficult if you the collagen is affected around the lungs). Hm, we will see...

Also - I think this is important to share with you all! I have awful sinuses and always am congested. I told her that I read it isn't good to take cold medicine/antihistamines with POTS and certain medications, plus nothing was helping. Anyways, she said absolutely DO NOT take cold medicine/antihistamines with the drug "mestinon."

So, just in case any of you are on mestinon, do not take over the counter cold medicine! I have a deviated septum (which I also just learned happens in people with EDS because the collagen falls and forms this "deformity... crazy, huh?) and she said surgery to fix that would greatly help my symptoms and be the best option! So an appointment with an ENT is in the works, again.  I have thought about this for awhile and have been told by a previous ENT that I should get it over Christmas break, I will consider getting it done!

I sure am oh so lucky and ever so thankful :)
It just goes to show that through years and years of struggling and frustrations, there also is a light at the end of the tunnel. You just have to have faith and never stop believing...


First, it's great to meet you! :) 
What do you think is the hardest part about having a chronic illness?  
The frustrations of people around you "not understanding". I have been told far too many times, "Well, at least you don't have cancer". People don't understand the devastating effects this illness has on you. They assume that just because "you look good" that it must not be "that bad". Oh boy, if they only knew. That is what I think is the hardest part... a constant feeling of "defending yourself to everyone on the outside (and even medical professionals)...
Has anyone done PT, how did you like it? Did it help?  
I have actually never tried Physical Therapy, nor has it even been mentioned to me by my doctors! 
I have thought about it though, as doing exercises on my own seem impossible at times.

Hello girl! I haven't had a chance to get to know you, but I am excited to start :)
Do y'all get brainfog and how long does it last?  
Oh, the lovely brain fog. I feel as though I get brain fog very frequently. Daily actually. there are times when I completely forget what I am saying or it's like, I know the word I want to say, I can picture it, but for the life of me, I cannot figure out what that word is. It's so frustrating. 
It has also taken a toll on my academic performance, and makes it extremely difficult to concentrate on research projects and/or homework.

I am so happy that your wisdom teeth removal went well! I know that was awful for me and I was praying you would make a good recovery! Also, thank you for helping me out with my project :) You were a lifesaver! Thank you, thank you.
Do you guys have problems with your blood sugars?  
When I was in high school, I had hypoglycemia but now I have no troubles.

How interesting to hear that you love sign-language! I have been talking to Hannah about ASL for awhile and I have completed all five ASL courses at my college. We should all skype and sign :) 
How many of you guys wear medical alert bracelets?  
I actually don't - Since our condition isn't life threatening, I don't really feel a need for it? 
That's just my opinion and I comfortable with the people I am around.
But medical alert bracelets are great if you like them!

I am so glad the procedure went well for you, but so sorry you are facing such awful residual effects. I hope that brighter days come to you soon :) PS I can't wait to skype soon! Someday girl, someday we will! Just work on getting better!
What is one positive that has come through your illness?  
One? I think there are so many positives that have come through POTS and other chronic illness I face. I have learned to appreciate the small things in life and be happy for just that one day I get to spend with my friends. It has taken me quite some time to learn that I just can't do it all, so learning to really treasure those moments you do have when you feel good is something that I love.

Does anyone believe in haunted dolls or paranormal stuff?
Oh yes. This may sounds odd or hard to believe, but the house that I grew up in until I was about 12 was haunted. The television would go on and my mom would yell at my saying "Erin, I thought I told you to turn that television off!" I would cry and say "Mom, I did! I swear..." then she would go an turn it off. It would click back on again. Then we even umplugged it and went to bed, as my mom was now getting nervous. Needless to say, we woke it, it was plugged in and ON! Everything that happened ALWAYS happened on a Friday night. Weird? yes. but it's true!!!

I love the bracelet that you made. I would LOVE one :) 
I will email you soon my address!

My Question
Do any of you have small fiber neuropathy and if so, what helps?

I hope everyone has a good week!
Take care,

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