A protest!

My friend Mark, my mom and I went to a lymes protest in NY on thursday. We got to hold signs and I got interviewed by local TV stations because I went with my IV drip in (pole and all)... very exciting. It was to protest the new guidelines published by the IDSA that would severely curtail the treatment new lymies get and would make any new treatments for me difficult to get.

There is an important petition going around - please sign it if you haven't already. It's at:
http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1


Lymes, unfortunatly, is an expensive and political disease. Remember to be your own advocate in the health care system, they'll spit you out fast if they can.

I would like to be able to thermal regulate. I would also like to be able to sleep through the night. And my aunt is right, IV poles are perfect for hanging christmas decorations.

Holter Monitor, IV Pole, and the like

I have a 24hr holter monitor hooked up to me right now; it's like a little EKG machine and I am just continuously hooked up. My mom and I went shopping yesterday and I looked like a crazy robot with all the tubes and line. Hysterical trying to explain to the dressing room lady why I didn't want to come out and show her the shirts I was trying on. The halter monitor is just trying to figure out what is wrong with my heart rhythm and the loud heart beats described in a previous post.

In addition to my holter monitor, I just switched antibiotic companies (saves my family over $4000 a month - United Health covered the first 28 days of my "experimental treatment" but haven't covered the last 3 months). The new company has different rosephin bags, so now I have an IV pole. I am on pulse regimen, 4 days on, 3 off. The 4 days on are 2x a day - so it is 3hours a day just on medicating myself, not even counting the phone calls, insurance/billing crap, and doctors appointments.

It's funny and bizarrely gratifying to have so much intense manifestations of my disease right now. Like I mentioned before, it's better to have your appearance match your pain, it's the only way you get credit for it. But now I am severely limited in my mobility.