Monday, June 21, 2010

If You Give a Mouse a Cookie/ If You Give Michele a Disease

One of my favorite books to read to my kindergartners is If You Give a Mouse a Cookie by Laura Numeroff. The book starts with a picture of an adorable mouse holding a chocolate chip cookie, with the words;"If you give a mouse a cookie, he will ask for some milk to go with it." In the story the child keeps giving the mouse what he asks for, only to be asked for something else. It's a very sweet story, and in the past I've always used this to describe the typical direction home renovation projects usually go. If you replace the bathtub, you'll want new fixtures to go with it, until in the end you have remodeled your entire bathroom.

Well it seems like my villain disease dysautonomia falls into the same category. If you give Michele dysautonomia she'll get EDS ( Ehlers Danlos Syndrom) to go along with it. Or how about one of the dozens of other syndromes that seem to like to tag along. Several months ago there was a posting on one of my favorite fb sites (Dysautonomia Awareness), "What else do you have?". The commonalities in diseases from a staggering number of those who shared were mind boggling! Here's a list of the ones that came up most often.

POTS-Postural Orthostatic Syndrome

NCS-Neurocardiogenic Syncope

EDS- Ehlers Danlos Syndrome

IBS-Irritable Bowel Syndrome

CFS-Chronic Fatigue Syndrome







Heart disease



And a large number of digestive disorders.

I could easily place half of these on my list, though I have not been diagnosed with them. Why no diagnosis? I don't want to take anything else, I'm so super sensitive to medications, one more might throw me overboard. So I push through the popping hyper extended joints, stretchy skin, migraines, princess and the pea syndrome, arthritis pain, purple hands and toes just so I don't have to take one more pill.

Well my big fat foot brought me back to my doctors office. I lived with one swollen foot for three weeks, and wearing ugly shoes during those weeks was the last straw! I want my pretty shoes, I want my pretty shoes (as I lay on the floor kicking and screaming)! So I drag myself to the doctors office, and I'm sitting on the examination table. The head doctor comes in and takes one look at my foot and informs me that my foot is indeed swollen (wow, she's good). She asks about recent injuries, which I answer "none". Does it hurt, "sometimes". Length of time swollen, "three weeks then, now it's been five". She asks about medications, and I give her the list. She looks back at my feet which are now a lovely shade of purplish/black, she raises her eyebrows, and asks if this is normal? I smile and respond "yes". She looks through my lab results from my recent hospital visit and asks me what the hospital did for my low platelet count? My answer, "What low platelet count?". My doctor responds with, "they didn't do anything about this platelet count? Hmph!". She spends several minutes rechecking my chart, and starts running down a list of thing to watch for. As she goes down the list; head aches, dizziness, swelling, discoloration, shortness of breath and irregular heartbeat. I remind her that those are all symptoms I experience on a daily basis. She "hmph's" again, and says nothing for a few minutes, then says that if I feel worse than normal to call her immediately. Now in my head I'm thinking, how do I distinguish worse than normal. These things happen in at various degrees daily. She sends me to the lab, where they take 10 blood samples and after bandaging me up the nurse declares "oh... I forgot one, sorry." Grrr.... don't you just love those phlebotomists! After being stabbed by a needle for the second time, I schedule my next appointment for the following week as directed by my doctor, and head out the door. I then realize I have no idea what having a low platelet count means!

Now being curious and feeling the need to be informed, I head for home (with a side trip for some yummy Chinese food), to find out what having a low platelet count means. I get on my well used computer and head for Web MD. Before dysautonomia I had never heard of this sight before, but with all the disease tag-alongs from dysautonomia I go there to keep myself informed about drug side effects and my current medical issues. Now, this site isn't for the faint at heart! There should be a warning on this site in big RED letters, If you haven't been given a specific diagnosis stop here! They give you every medical possibility on your inquiry. The list for low platelet count included Lupus and Leukemia, AHHHHH! Calm down Michele, no one mentioned Leukemia on the list, get a grip!

So I went back to the doctors today. My platelet count is still dropping, she still doesn't know why, and she wants to run more bloodwork. And to top it off, she has no idea why my foot is swollen! I WANT TO WEAR PRETTY SHOES!!! Can't she just stick a pin in it and pop it, that should bring the swelling right down!

I'm much more at ease with it at this point, I know my autonomic system seems to continue to fail me in one way or another. I'm pretty sure dysautonomia is the culprit, and in the mean time, I'll just stay away from sharp objects for a while! If this turns out to be some new disease, I want to name it. I was thinking of something along the line of BFF syndrome (Big Fat Foot Syndrome), and who doesn't need a bff, that's what I'd like to know!

Still inspired,

1 comment:

  1. Do you think that is what Paris Hilton was looking for in her search for her next BFF?

    I've been trying to think what you can do for your foot/shoe dilemma. I think the answer is bejewelling. You can pick up those stick on gems at most drug stores these days.

    On a more serious note, I hope they find an answer soon for the bff and your platelets. The "you're a medical mystery" gets a bit old after a while.

    Hugs :)