Tuesday, February 05, 2008

Not Again

I was sitting in my egg chair reading the grocery ads as they expire today when I stood up to throw them away and the "feeling" returned. I am not sure how to explain it except for as a head rush when you get up too fast in the morning. Basically I felt flush, my extremeties tingled, and I had to stand there for a moment until it passed. There was no blacking out of my vision or falling down.

I hope this is just a one time occurance and related to something else not serious as I was really looking forward to going off the steroids and my body finally getting on track (no more papilledema, no more blood clot in my leg, no more steroid withdrawal, and no more need to take steroids due to swelling or adrenal gland insufficiency).

I have been cleaning my office this week and came across a calendar from 2005 that I saved because my medication schedule was written in it and I needed to record it yet on the computer. Boy did I have a hard year in 2005. What a doozy! Last year really was rather simple compared to what I went thru back then. Just to give you an idea, I discovered that the highest dosage of steroids I had been on was 80 mg! Currently I am on 1/2 mg. Big difference eh? No wonder I had such a horrible drug withdrawal after stopping them that spring!

Also, throughout the weeks and months is written several times "restarted the steroids" and "steroid taper". I just could not get off of them as the tumor continued to swell pressing on my brainstem making me sick and dizzy.

Now my problem is the opposite. Instead of needed them bring down the swelling of the tumor so I would feel better, I need them because my body is not producing its own natural levels. Hence the weakness episodes. It is dangerous to not have enough as it hinders the body's ability to function. Wierd, eh?

I just hope this is not going to happen again. I felt a little strange after taking the steroid this morning and the recurring symptom happened within a half hour. I have been on a taper (lowering the dose slowly) for about a month now. My doctor originally planned 4 months but I pleaded to get it cut in half. Since I had been taking steroids since the surgery it looked like we could try it out.

Anyhow, I have already taken lots of steroids within the past few years and I will need to take them again after the next surgery. I am getting tired of being so drug dependent and also having adverse reactions to certain drugs. I need a break from them. For crying out loud I am only in my 30s and have had more drugs pumped through me than someone who is in their 50s! How long can someone take all these drugs before the body just cannot handle it anymore?

Please let this taper do the trick so I don't need to take them until the next time around. I am becoming like a diabetic needing insulin with the steroids.

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