Saturday, October 9, 2010

I'm a Super Freak, Super Freak, I'm super Freaky!

I'm a super freak! I would have downloaded Rick Jame's Super Freak, but I'm not THAT KIND of super freak. The song is kind of fun and catchy though.

It's Friday, and it has been a busy week. Back to school night, unruly students, PTA meeting, picture day, and alphabet party to end it all. I had plenty of volunteers, and the students had a blast using foamy letters to make A,B,C hats, letter name necklaces, stamping A,B,C's on vests, shaving cream writing and play-dough letters. But managing time, behavior, checking on groups and taking photographs can be very tiring. Thankfully all went well the rest of the day, but I was pooped.

To finish off the day I had a doctors appointment with my new doctor. I had to change insurance plans because of an increase of $350 on my former and much better plan. I was very nervous going from the top of the line insurance to the bottom. It's scary when your healthy, add having a rare chronic disease and it can be a nightmare. The new doctor was very nice. Then I told her I had dysautonomia and she replied "You have what?". I said it a second time, and she made a pretty good guess at what it is by it's name, which is a better response than I'm use to getting. I gave her my symptoms list along with the medications that work. While I was sitting on the examining table my feet turned a hideous shade of purple (my feet have a tendency to show off on the examining table), and her eyes popped out and she said "Is this normal?" I giggled and said yes, and apologized for not including that symptom in the list I just recited. She informed me that I should get some compression stockings, and I giggled again and said "I do wear them, but I'm a bit naked right now." She giggled too, so we're off to a good start. At least she gets my bazaar sense of humor. I requested a referral to my neurologist who specializes in POTS, and she informed me that it's next to impossible to get a referral outside their building. My sole purpose in choosing that medical group was that they were the only one in my plan to refer to my specialist. So I guess I'm on the road for some red tape and hassles. Oh well, what's new.

So I get home and I'm feeling more fatigued than usual. I take off my sweater, and my hands and arms are red, which is a new thing for me (my hands are usually red and purple and that's all). To top it off my arms are blotchy and spotty! I take off my shoes, and notice my feet and lower legs look the same. I decide to take it easy and I stick a frozen dinner inside the microwave. In 5 minutes and no effort dinner is ready. I watch "Say Yes to the Dress" and decide to call it a night. I get ready for my nice cool bath and as I step into the tub I notice my whole body has blotchy red spots "Nice"! As I dry off my swollen purple feet and my blotchy body, I start crying. I'M A FREAK! Then my wonderful sense of humor comes back and Super Freak begins to play in my head, and I feel a bit better. When I put my socks on I notice my feet are so red that they can be seen through my socks. I decide to show my daughter my freakiness, and I tell her that I'M A FREAK! She giggles and tells me "No mom, you're special!". Special is good, and a much more positive way to see things. So "I'm super special, super special, I'm super special now, da-da-da-dum, da-dum, da-dum, da-da-da-dum, da-dum, da-dum".

Inspired,
Michele

P.S. It's so funny my week ended this way. On Wednesday I actually thought I might be in remission, I felt almost normal Sunday through Thursday, I hadn't felt that good since before POTS. Funny how quickly things can change, just gotta role with the punches.

Matt:10:8
Heal the sick, raise the dead, cleanse the lepers, cast out demons, freely you have received, freely give.

3 comments:

  1. Just before your blog came through on my reader I had just been complaining to my husband that with the storm system that blew through AZ early this week, I was feeling really good, more myself than I'd felt in ages, then Thursday KABLAM I started sliding back down the slope again. He pooh-poohed it, of course, but now you had the same experience... makes me go Hmmm!

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  2. You are Super Special Michele, let no one including yourself tell you differently. Sorry you're back to red tape with your new docs. Makes me very glad I am here in Aus, you can pretty much see who you want here except for wait lists. Maybe it's time for you to come down here for a visit. My couch pulls out :)

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  3. i get blotchiness more so than just full out discoloration.. I guess our bodies are trying a new fashion statement? Sorry to hear about the even more struggles of getting your neuro. referral done! and hopefully you have more good than bad days to come!

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