recap round one

 Saturday, March 23 

The Day of the Wedding: I was fine...and then I wasn't.

"It was time to start lining up to walk down the isle. I was one of the bridesmaids and my back started having painful muscle spasms. I thought I could push through it at first, but when I stood up to go get in line my legs fell underneath me and forced me to sit back down. Tears began to fill my eyes as I realized that I was going to miss the ceremony. One of my best friends was getting married and I was going to miss it. I was happy beyond words for her as she stood arm in arm with her father ready to walk. She looked over her shoulder, giving me the okay to stay behind. I wept. I knew this was likely to happen when I woke up that morning, but it snuck up on me and caught me off guard at the worst possible time. The spasms increased as I listened to the processional from my little room. The bride's uncle and his wife stayed at my side and talked me through each painful set of spasms. Then the worst came, the spasms seemed to move to my entire torso, I couldn't breathe and an ambulance was called. Of course all I could think of was "make sure the door is closed so no one can hear me gasping and coughing" and "don't ruin the ceremony with sirens." But so you have it, the paramedics entered and automatically assumed from my "claw" spasmed hands that I was having a panic attack, but the most I could do to talk was stutter like an absolute fool. It irritates me like nothing else when they ask me questions and try to make me answer when it is so hard to try and talk! Especially when they wouldn't let the people there, who were there when I could talk and explain, answer for me (one of which was a doctor). They can sound so harsh and waste time "interviewing" me. In the end we were able to inform them that I have a history of some kind of neuromuscular degenerative disease. "Degenerative," I cringed from my stretcher as the paramedic said it to the admissions nurse in the hospital. When they first lifted me at the wedding I tried to hold my head up but paralysis was quickly setting in, so by this time in the hospital I couldn't move from my neck down. I looked with my eyes at the paramedics and saw the look on their faces when they announced my age. Over and over that night people were bothered by how young I am to be experiencing all of this. I don't feel young. To me, this was just another episode ending in yet another ambulance ride. Same ole', same ole'. This one even wore off faster than others have in the past and when April and Eric showed up with baby Memphis Rey, my night was immediately made better. There is little that a smiling baby can't cheer you from! Then I heard last night that Frank (the bride's uncle, who is a doctor, who was with me through my episode) at one point thought he was going to have to intubate me. You know, cut my throat open a little and put a tube in it so I would breathe. I guess I had stopped taking these spells seriously since they happen so often in varying degrees of intensity, because when I heard that word my stomach lurched. To be completely conscious and be able to feel that happening would have been HORRID! Now I'm seriously rethinking some things. Once again medical professionals said it looks like MS but we have no proof. All the proper tests have been done and I have passed them all, to my chagrin. So here I am left with this mysterious body of mine that just doesn't always listen to me. Still, I have a God who listens and speaks to me. Constantly he tells me not to worry about tomorrow but today this is hard."

STILL trying not to be too disappointed that I missed the wedding