Wednesday, September 22, 2010

Is it Idiopathic?

If no other diagnosis can be made, I will be diagnosed with idiopathic urticaria (rash) or idiopathic angioedema, or idiopathic anaphylaxis. What does that mean?

Idiopathic is the fancy medical word for "we don't know." Idiopathic anaphylaxis first was described in 1978. It refers to unexplained anaphylaxis that implies a risk for death whether by shock or upper or lower airway obstruction. Most episodes of anaphylaxis are not fatal. Anaphylaxis can also be non immunologic - meaning it has nothing to do with allergies. 25% of anaphylaxis are from unidentified causes.

What this means for me is that I will be tested for every possible cause and if all those tests are normal, then I am labeled as Idiopathic.

Not having a "diagnosis" makes me feel crazy. When someone asks what is wrong and you say they can't find the reason, people really look at you like you are psychologically impaired.

Having to file papers for disability is devastating. I am the person who never wants to take off a day because I am sick - I have went to work with IV fluids running in my hand. All the little comments people make about keeping up the deadbeats becomes personal. I don't want to need help! I want to be well.

Scott and I have taken a trip every year for our anniversary. This year we are going to visit ETSU Internal Medicine Associates. I can't imagine being more than a couple of hours away from the physicians who know my situation and how to treat me.

Being chronically ill is devastating to your self esteem. It makes you feel useless to society and your family. You feel dependent on someone for everything. I have been shopping one time since July 22nd. My mom took me to Michael's to pick up some of my snazzy reading glasses and to Walmart to get some toiletries. Every bite of food I put in my mouth is food that someone else brought into the house. I can't use the stove when no one else is at home because I forget about it and cause fires. Scott checks every email I send, every check I write, every bill I pay online, because we can't tell sometimes if I am really coherent. I might talk to someone and not remember. When I come out of a doctor's appointment, all my paperwork goes to whomever drove me there because I will lose it. I will forget that I got a new prescription.

My knitting has become a new adventure. I was working on a simple shawl. Sometimes Scott goes to bed before me and I sit up and watch TV or knit. I picked the shawl up the next day and I had dropped about 1/3 of my stitches! It was the biggest knitting disaster I have ever seen!

Scrap booking and card making give me some good laughs too. I have things so crooked. The problem is that at the time I am doing these things I have no idea that they aren't perfect.

This is enough of my crazy tale for tonight - it is almost time for another medication dose and another few hours of adventure.

Until tomorrow - live each day as if it were your last!

1 comment:

Bekka said...

We loved the card you sent and we thought it was perfect - just like you.

Hugs from the big city!