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Dropping In To Say Hello

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Just wanted to say hi. I haven't been on in a while. Basically because it's too hard for me to read the posts. I get too sick after reading for a long time. I feel like i'm starting to have more and more "Bad" days than good. Trying to keep my chin up but it is very hard. Just passed my 3 year anniversiary with POTS. Seems like I can't hardly remember a life without it now... sorry if I sound like debby downer, just very frustrated....

AFter fighting my insurance company to pay for the epogen injections they denied it. So that is out the window for me. I am getting weekly IV treatments now, but I am not seeing much of an improvement there. Maybe for 24 hours. Anyone do it on a more regular basis than once a week?

I am also fighting for disabillity. Been working on that for almost a year now. I think i'm on my second or third denial, next step is for the attorney to request a hearing on my behalf. Any suggestions? We could really use the benefits!

Finally, our support group in Wichita is really getting off the ground. We have 3 members now (ha I know that doesn't seem like much but it's a lifeline for me to reach out to someone who is going through the same thing!).. We are thinking of having a regional meeting coming up in Feb. so if you or someone you know lives in this area and would like to make a trip to Wichita, let me know! We are going to try to get some local physicians in to have discussions about POTS/NCS.

Take care everyone. I'm so glad I have a place to come and vent!


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