*Cut* That was me cutting the red tape put up by Idaho’s Insurance for Poor People. It was no easy task and took several months but we were eventually able to schedule a muscle biopsy (and a bunch of other tests) at Oregon Health and Science University. OHSU’s Mitochondrial Research Department covered all my medical expenses the insurance refused, which was such a blessing. There is no way we could have afforded even a fraction of the cost. As it was we broke the bank paying for our hotel and food.
The team was obviously excited to meet me. Hmm, meet me or poke at me? I think both. I was a rubix cube to every doctor and researcher on the Mito Team. They couldn’t wait to start tinkering with me and in an odd way it made me feel special.
First on the agenda was fasting blood work. This was routine for me now but I wasn’t quite prepared for how much they were going to take, at least 20 vials and I’m not exaggerating. I had never felt so drained in my life. I imagine this is what it would feel like if a vampire feasted me. Before they let me stand I had to down 2 cups are orange juice. Let me stand, ya, like I could have. So I sat there, drinking my juice and trying to stay conscious (exaggerating now) when I’m told of my next test.
“You will be having an Electroretinography (ERG) Eye Test checking for Retinitis Pigmentosa . The doctors will explain more in detail but it’s very easy. Just a couple of electrodes attached around your face and in your eyes. But don’t worry hun, they’ll numb your eyes first.” Wait, put what where!? She did not just say someone is going to put an electrode in my eye?!? In both my eyes! I didn’t like this. No one is sticking anything in my eyes! It sounded like something out of a Sci-Fi movie. My mom could see my apprehension and reassured me everything would be OK. Besides, Aunt P had it done before and she said it didn’t hurt. I tried very hard to not let myself be overrun with fear. I didn’t want my mom to worry for me after all…
With the procedure explained I calmed down inside. Everyone was so nice, it was hard not to trust them. The ERG was not pleasant. It took them a long time to get the electrode contact in my eyes, even with the use of a speculum propping them open. The longer they took though, the more mouthy I got. I’m pretty sure I warped into Evil Lacey after the 3rd try of placing the electrode. Once the freaky lenses were in place I definitely looked like something out of a Sci-fi movie. They had me put my head into a dome that flashed images at me for about 1 1/2 hours. Then, they turned off the lights and I had to do it for another 20 minutes or so. I was miserable. I had a migraine within the first 10 mins of the test. I couldn’t get comfortable, I couldn’t blink and the drops they kept putting in stung. I just wanted this over. When the test finished I was completely wiped. The migraine lasted for several days and my eyes felt so abused. I just wanted to go back to the hotel…
The next morning I was in a better mood.
Surgery day! I was a little nervous but mostly excited. Although my migraine was still terrible from the alien torture device, I was really looking forward to this. I know, I’m a little twisted. From a young age my parents knew I was. I enjoy watching operations, I always found shots to be fun and would request them at appointments and I like watching the needle as it enters my vein for IV’s or to take blood. I’m just fascinated!
A nurse, a Doctor, and an Anesthesiologist walk into surgery prep room. No really they did…to discuss the ends and out of the procedure with me. It all seemed easy enough and after my IV I was ready to get the show on the road. One catch though. “Lacey you will need to take off your panties.” My face went pale and I began to panic. “Take off my panties? Why? You will be biopsying my thigh…?” Dr says, “Well, yes but it’s not sanitary. We can’t allow you to wear them for the procedure.” Very frantically with a quiver in my voice I say, “But these are brand new underwear! My mom just bought them from Wal-Mart! She washed them and this is my first day wearing them!” My heart was racing, tears were coming down and I was totally convinced someone would violate me in the O.R. I didn’t want strangers, especially grown men, seeing my girl stuff! I think it was obvious to everyone in the room that my underwear were staying on. My very kindhearted doctor got down to my level and said “I have an idea. How about you wear them into the O.R. and one of the female nurses can discreetly removed them before surgery, and I’ll have her replace them right after we stitch you up?” I agreed and was at ease when I walked on down to surgery.
Being put under was risky business if I had Mitochondrial Myopathy. Of course I didn’t know this then, so I wasn’t worried in the slightest. People with the disorder usually have an increased sensitivity to anesthesia. Usually it means we don’t come out of the anesthesia very gracefully although there have been cases where they don’t come out of it at all. But death is very unlikely with the technology we have nowadays to closely monitor patients.
Let’s just say I don’t come out of it gracefully. I am mean, rude, impatient, and normally I can’t stop vomiting. Those are just the standard with me. Twice I had surgery to remove a ganglion tumor from my finger and both times I was given too much anesthesia for my weight (25 and 50 pounds too much)! I was terrible. My mom says I was not her little girl when I came out, I was someone else’ or possessed. I told off a nurse for bringing me a singing bear… Poor nurse. She didn’t look me in the face again after I told her through my clenched teeth to “Get this stupid singing bear out of my room. Do I look like I’m 5 (I was 8, and I did)? What an idiot!” Hmm, not my most shining moment. Anyways, I may not have come out of the surgery gracefully, but I came out of it and I didn’t make anyone cry this time!
We left the hospital that day and the waiting began. I prayed so hard for a diagnosis. I wanted a name to go with what I was experiencing. I didn’t know it then but what I really wanted was validation. I wanted to say “I have blank and that’s why I am in this wheelchair” or “I have blank, see L, I’m not lying”. My sister always told me she knew I was making up the pain for attention. I wanted so badly to prove to her that I wasn’t, to have her sympathy and not her hate. And that twisted part of me, well, it wanted to know what the end would look like.