For those of you that don't know me well, you may not know that I have been living with brain tumors for more then half of my life now. I was diagnosed in 1990 but, they actually started affecting me during the pregnancy of my daughter who was born in 1986. My tumors are attached to my optical nerves and they effect me in several different ways. First of all I do have to say that I am very blessed to still be alive. This is a fatal disease that I have and as far as my last neurologist knew, I have been living with it longer then anyone else has. I also should have been blind more then 2 decades ago. Most people that have this do lose their eye sight and I am truly lucky that I have not yet. My eyes are effected though. I get blind spots and my eye sight changes often. My headaches are daily and the bad ones are hitting me about every other day now. And when I say "Bad Headache" what I really mean is what most people have never experienced in their life. My little ones feel like an ice pick sticking in my eye. The big ones is when it would feel better if someone would place me into a guillotine and let the blade come down swiftly. I can't get out of bed, I can't handle light or noise and I can't even raise or lower my head. The emergency medication I am on helps sometimes but, my insurance only pays for 10 pills a month.
Something else my tumors effect is my weight. It keeps me from losing weight. Well, I did a lot of research and found out that with gastric bypass surgery it would be possible to lose weight but, there wasn't any studies on anyone with my disease having lap band surgery yet. Lap Band is a much less evasive surgery and it is reversible. So... I had my surgery in August and since then I have been pretty much starving myself. I consume about 6 to 12 ounces of food a day and zero calorie drinks (mainly water). And where has it gotten me? I have only lost 45 pounds! My doctor is bitching at me thinking that I am cheating on my diet. I went to my neurologist today and he said I shouldn't have had the surgery at all and might as well get it reversed. Just lovely!
And the news keeps getting worse. The Dr upped all the dosages on my meds today and added another pain med. He is also highly suggesting that I get botox shots in my head to slow down the possibly decrease the size of the tumors and reduce the amount of headaches. Oh that sounds like fun. Let's shoot poison in my head and see if I go blind or what else might happen!! Ya I don't think so. Not as long as I'm not in 4th stage. I'm not afraid to die but, I do not want to be blind only for art reasons. Yes, I am serious about that.
Enough whining for tonight.
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