Saturday, March 20, 2010

Alone in the Night

Just two days after my amazing Michael Buble experience, I see Dr. S., and more blood is taken. We are checking my white blood cell count again and ANA levels. He mentions sending me to a rheumatologist and a hematologist again b/c of how low my white blood cell count and neutrophils (http://en.wikipedia.org/wiki/Neutrophil_granulocyte) are. I tell him I am so frustrated b/c it was exactly a year ago that this whole process started for me and I saw about 4 rheumatologists before I got to him.

It is 6:30 am and I have been awake the entire night very sick. I started getting a headache when I fell asleep, and so took my Fioricet and 1/2 a muscle relaxer. This served to make me extremely nauseous and sick. The headache turns out to be a classic, throbbing, migraine, so the Fioricet does nothing for it. I spend the entire night in an enormous amount of pain. This was the cycle I went through each month last year before I ended up in the hospital. It is like my body is toxic again, or reacting to something I ate. It is also the last day of my period, so I know now that this is effecting me greatly. I used to think this cycle was a flu or something, but now I know better. Ironically, I was at Dr. S earlier this day, and told him these migraines weren't happening anymore.

When I am alone in the middle of the night and my body is rebelling against me I start to lose my positive attitude. I realize how alone I am in the battle in my body. Nobody can get inside there at 3 am and fix what is raging inside of me. I want to give up. I am so tired of feeling like this. It is a roller coaster. One day/week I feel good, then I get sick again.

My analogy is this...imagine there is something wrong with your car and you take it into the mechanic. He says, "well, there's something wrong with it, but I don't know what. I'll give you some oil and you put it in there when things seem bad." So you do that and you follow the mechanic's instructions. You assume your car will run efficiently now. So you make plans to go to work but on a random day the car just doesn't run. Now you can't get to work, and you know it'll take about 2-3 days for the car to right itself so it can function. You then make plans for dinner with friends. You have every intention of going. The day of the dinner the car breaks down again and needs to rest, and there is nothing you can do about it so you must cancel your plans. This is what it is like to live with lyme disease/chronic illness etc.

I am questioning myself now. DO I have lupus? Do I have fibromyalgia? Do I have lyme disease? I am so confused, and FRUSTRATED.

It is light outside now. I haven't slept the entire night. This is very bad for my immune system and robbing my body of the chance to heal. I read back over my posts and I seem erratic. One day I am at peace and positive, the next I am frustrated and hopeless. I realize this is lyme disease.

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