Late February 2008. It seemes as though a good day is followed by a bad day or two. It could be because I try to exert myself too much on good days. Around this time, my daily schedule involves waking up and taking a shower where I dry heave. Kind of like a pregnant lady. (I never did this when I was pregnant either time) Once this is done, I can eat breakfast and then take a nap. I can wheel myself to the top of the stairs and use the railing or scoot on my butt to get downstairs. I like to go to the couch to hang out with whoever is down there, but the television really bothers my eyes if I'm down there, and there is only one place on the couch I can sit.
My adjustments are at least once a week and I really look forward to them. Every time I'm adjusted, my nausea and food aversion subside. Dr. Ray says this is because I am laying down so much that my vertebrae have more opportunity to be pushed out of place.
Another thing that I have found that works is to eat more protein late at night. This seems to result in less nausea the next day.
March 14, 2008. I have been at my parents' house in Moses lake for 3 weeks on ths Sunday. I have been able to walk unassisted for over a week now. I tire easily and my stance is very wide. I still have the jitters and bad depth perception, but I'm slowly getting control of my muscles. I can lift up Christian from the ground when I feel really good and walk a short distance.
The nausea has been gone for the last two days, and I have been able to eat much more. It is a fine balance of knowing what I can and cannot eat, knowing to eat every 2-4 hours and never to eat too much at one sitting. I may be around 93 pounds now. I didn't put on any weight the first two weeks. Kaizen is doing great! He had put on some weight and color from playing outside. He eats more and sleeps well too. *March 9 was the first day that I took real steps without assistance. My mom has the video, I'll get it up one of these days. It's pretty funny.
An interesting note is that when I do something once, my muscle memory seems to kick in and I can do it well within a week. However, the jittering and depth perception issues will slow me when I'm in a new situation that makes me nervous. For example, I went to a restaurant for lunch with my mom and the kids, and when we were leaving I got left behind while my mom was chasing the kids out the door. People walked in the door and were heading in my direction. I froze and could barely see. Then I was gripping a garbage can and shaking like a leaf until they passed. (I have to pause to finish laughing) We can only imagine what these people thought of me. I did eventually make it out the door on my own.
Mike will pick me up in a week and we will drive home on Easter. I can't wait to see him and show him that I can walk after he has carried me around and up and down stairs!!!
March 28, 2008. I am back at home for about a week now. I went to the chiropractor and have been going up and down the stairs with Christian all week. I do a lot of cooking. I feel a little nausea and exhaustion today.
An interesting note that I have realized is that I need to look through the bottoms of my eyes like bifocals to focus on something. Looking up or through the tops of my eyes makes me dizzy and lose balance.
April 7, 2008. I drove for the first time. I drove around the neighborhood.
May 22, 2008. It has been over a month since I've written, so I hope I can recap. May 11 (my birthday) was my four month anniversary of being diagnosed with OMS. Mike left that day for Denver. It seems that I got better when he left. I'm thinking that it happened out of necessity. I still visit the chiropractor once a week, but I'm doing much better.
Turning my head is still difficult when done quickly because my eyes take time to focus. I can drive on the freeway and find that it is easier than neighborhood driving because there is less turning.
I weigh about 100 now and have a good appetite. I still have nausea when I eat certain foods. Taking bluegreen algae helps with the nausea almost instantly and increases my stamina. I still need a lot of rest.
I have been swimming for recovery for about a month and a half now. I also do the stationary bike I am up to 10 pool laps. I only do the breaststroke and backstroke since I don't have to turn my head with these.
Withing the last two weeks it feels that the jitters have all but stopped. They flare up when I get really hungry, emotional, or exert myself too hard.
I have noticed a severe temper on myself. Just today, I was cussing and screaming at a driver for almost hitting me. I recently yelled profanity at children who were hitting Kaizen, and the worst is when I yell at my husband and children. As I become better, my temper is under better control, but it is definitely a side of me I've never seen or experienced so acutely. It is almost an out of body experience with a serious lack of control of what I say.
June 12, 2008. It is 5 months since my OMS diagnosis. I would say I am operating at about 80% of my normal self. My strength is a big part of what is missing. I didn't think that I was very strong until I no longer had the strength that I used to have. It is like rebuilding all of the basic muscle that I used to have. The things that I am still unable to do include running and jumping.
I stopped writing journal entries about my OMS after that. Now it is over a year since I've been diagnosed and I am all but 100%. I did try to go back to work a restaurant and found that my hands started to shake when I carried drinks in my hand or on a tray. It got so bad that I had to quit after a few weeks.
Four months ago our family moved to Denver for Mike to work from the office here. Therefore, I have not been able to see my chiropractor. I attribute this as part of the reason for my little flare ups. Looking back, I am eternally grateful to my family, friends, and even some strangers that supported me through that wild and crazy time of my life. It opened my eyes to a whole new reality and made me thankful for the smallest of my life's pleasures.
If anyone who reads this is so unfortunate to have been diagnosed with Opsoclonus Myoclonus Syndrome, I pray for you and hope you got some useful information from my ramblings.
