Wednesday, August 26, 2009

It's my BLOGY and I'll bitch if I want to!

And the MRI shows once again....IT'S PROGRESSING!! I now have 12 lesions on my spinal cord ranging in size from 9mm to 74.7 mm. The doctor is worried because it is progressing so fast and I am terrified of life right now. I really don't know what is worse, the idea that this disease is trying to kill me or the idea that it may not succeed and this is the quality of life I have to look forward to.

Every time I am alone, I find myself having crying fits, which is highly out of character for me. I am not a crying kind of girl. But I can't seem to shake this sinking feeling. Each day this disease seems to get worse and worse. I never even thought MS was even possible until I was diagnosed last October. Then I was told it is relapsing remitting and it will go away and come back. Then I was told it's looking like secondary progressive and now I am being told it is progressing faster than should be possible. Neuro started me on Avonex, but already believes it is not going to work and has already planned to switch me to Tysabri in 6 months.

And I am still not working, and I am at home feeling completely useless. I have no energy to do anything. I am now on Tramadol and Neurontin and Avonex and Ambien. I don't know if it is just the frustration of this stupid disease or the increasing symptoms or self pity or maybe even a side effect of the meds but I can't stop crying. I don't cry when my daughter is here and I don't cry in front of my fiance or my friends and family. And I am alone a lot lately now that my daughter is in school. Which leaves me time to think, and then I can't help thinking how the hell my life has turned into this and I lose it all over again.

What sucks is "You look so good!" yet I feel like I am trapped inside of a torture chamber and I have no way to escape. You can't tell by looking at me that my legs are on fire you can't tell that it feels like my skin is trying to crawl away. You can't tell that I cannot see clearly out of my eye or that it feels like I have three knives sticking straight into my spine. You can't see the torture that my mind goes through when I forget a word, or I forget where I am going or why I walked into this room. You can't seem to comprehend my new phobia of stairs, or daylight, or driving long distances. The dread that washes over me when it's time for bed because I don't know how bad it is going to hurt to try to lay down and I have no idea what new torture my body will invent the next day. You don't get to feel what it's like to hook an IV into your arm and pump yourself full of toxins that make you pray for the mercy of death as you watch your body respond and you gain 9 pounds in 5 days. You don't get to experience the panic that takes over when you get so much as a sinus infection because you know your eyes are going to take the hit. But I LOOK great...when I'm not bursting into tears that is.

The depression is a real bitch. That is one of those side effects they warn you about but you just don't know quite how to prepare for it. And yes, I do realize how much worse it could be. And I am grateful that I can still use my legs, and I can still swallow and I can still get from point A to point B on my own. I do know that it could be so much worse, but that doesn't make it suck any less. That doesn't make the hopelessness fade any faster or the fear subside.

Who knows? Maybe I am just going insane! That is what happens when you obsess over things. I don't think I have spoken to one person with this disease who doesn't obsess over it. It's not something I do on purpose but when you have something attacking your body and you feel the effects of it 24 hours a day you tend to think about it 24 hours a day.

I just felt like venting!