Before the actual strokes I had some tingling in my fingers in my left hand. I didn't think much of it other than it was strange. I thought maybe I was starting to get carpel tunnel or something like that. I really didn't put much thought into it. In hind sight, it was the start of something very bad.
After the strokes I lost some control of my left arm, hand and fingers. I could still move them all, it just took a little extra effort to do so. It just didn't feel right at all. There were times as well that I lost all function in my hand and fingers. I couldn't move them or feel them at all. It was so scary!
Since the surgeries I have't had any of that any more. I do however, get dizzy and light-headed when I get up from sitting, to a standing and walking all-in-one motion. Not horribly, but enough that I hold on to something for about 10 seconds before it stops. My left foot also has this "humming" feeling when I am still. It's hard to describe, but it's like an very slight vibration feeling. Both things that I can live with. Key words...I can live...with!
That takes care of the physical part. That was easy...I'm still not sure how I am/feel emotionally about it still, most days are different. Obviously I am so super thankful that I am alive and well and doing as well as I am. I don't know another Moyamoya patient that is doing as well as I am. The emotional side is hard. I went from first symptoms to surgery in one month. That is unheard of! But, since it was so fast, it was like a blur..a whirlwind of disbelief. I felt I had to be strong for my family. My children were so young; they didn't know what was going on. All they knew was that mommy was sick and was in the hospital with head ouchies. I didn't want them to see me scared or cry. I had to be strong for them. Actually, I rarely cried. I don't really remember ever crying actually. I did what had to be done, there were no options. It was what it was. After all was said and done, and we were home, back to our normal life, that's when the reality of it set in. But, again, I wanted to be strong. I was a stay at home mom to 2 young kids. I wanted them to know that all was fine and mommy was ok. That was may main priority...to get things back to normal and get the kids back into their normal routine.
Now it's a little different. Now there is another woman I know who has Moyamoya as well, but is not doing as well. I feel so bad/sad for her and her family and feel frustrated that there isn't more I can do for them. I have some guilt issues as well...first, that I am doing so well and she isn't. I know this isn't my fault, but I have my hair and normalcy and she is in this "medical hell limbo world". It's just so sad and tragic. Secondly, I have guilt that I never got back to these same doctors after I went to San Fransisco. I feel like had I got back to them and told them that they misdiagnosed me with the Vaculitis and that is WAS Moyamoya, maybe that would have helped them correctly diagnose this woman only 3 months later, and she wouldn't have had to go through all the crap she had to go through. Again, logically, I know this isn't my fault, but the "what if's" can drive you crazy. So, yes, my days vary.
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