Thursday, September 30, 2010

Sleepy Time

Starting yesterday, my steroid dose was cut in half. Now I am back to sleeping all the time. Even at half the dose I am still on more than double what I was taking before seeing Dr. Krishnaswamy.

My hands still shake, I am still very hungry, but so far no rashes or shortness of breath. Yesterday I went ahead and slept most of the day. Today I have fought it, and have managed to keep myself awake. So far I have been up for 8 hours.

The leaves outside my window have started turning golden yellow. I love watching the colors change.

Tuesday, September 28, 2010

A bad day yesterday.

No rashes, no shortness of breath, but a very fast heartbeat that I could feel pounding even in my feet. My pulse was running 110-120 most of the day and I was shaking like a leaf in the wind.

Today is better. My mom and I both had appointments in Johnson City today. I went to my Allergy office and she went to the Eye surgery center. She is having pain and watering in her eye and blurred vision, but we expect that to be better very soon. Pray for her to be able to see well again!

Today is our wedding anniversary. It is an unusual one - we usually try to celebrate by going out of town, but this year will be just a quiet night at home.

I haven't been able to get much information from my disability insurance - they are waiting for my physicians to send in paperwork. We are trusting God to provide for our needs, and so far he had done a super job of that! It is very hard for a person who needs to be in control of everything to let go and live on faith, but I have developed a peace that I never had in the past. My favorite verse was always "consider the lilies" - now I can say it absolutely is the truth.

I know my grammar is most likely driving some of you insane - sorry. Right now I am just putting out my thoughts and feelings with no attempt at proper grammar. Maybe I can get a volunteer editor??? (Hint - hint: to the cousin who is studying to teach).

Luke 12:27
New American Standard Bible (©1995)
"Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.

King James Bible
Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these.

Sunday, September 26, 2010

Finally Fall

I really enjoyed the nice cool air today. It was nice to go outside and feel autumn in the air.

Today had been a reasonably good day, which gives me hope that this new regime of medications just might work. I still have tremors and am very tired, but I made it through a day with no itching or rashes.

Saturday, September 25, 2010

Yesterday was a long day.

Two trips to Johnson City was a bit much. The early morning eye exam went well.

I was back home for about 4 hours then back to Johnson City to the sleep lab. I had no idea how many wires were going to be attached to me. The goop they use to glue the wires to your head is similar to a heavy build up of lanolin in a fleece. Washing my hair the same way I wash fleece did the trick!

I have another sleep lab appointment next month, and I am going to go with dirty hair next time! Why bother washing in advance to be greased. LOL

Thursday, September 23, 2010

Rough Day

In spite of my tripled steroid dose, I have had 2 of my episodes today. The first one was only a rash on my face, but the second was a bit scary.

After using my nebulizer and extra Benadryl I believe the danger is over, but I am too shaky and weak to do anything more than TV or reading.

Pray for a better day tomorrow!

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!