CFS/FM Awareness Month and Update on Moi

I thought I would mention to anyone reading this that it is Chronic Fatigue and Fibromyalgia Awareness Month. There are several people around the country with this illness who go to Washington D.C during the month of May and talk to Congress and lobbyist about these illnesses. I would have loved to be a part of this experience, but I decided to take some classes this summer term.

There is currently a contest put on by ME-CFScommunity.com The site is encouraging care takers, loved ones, or patients to share there stories about the illness. You can either write your story or do it through a video. There is a cash reward for the winners.. Go here for more details

I know that when I was on Valcyte I was always so curious about how others were doing after they took the drug, so I thought I would update my health status. I am still experiencing great energy and stamina. Like I noted, I am taking an Ear training and Dictation Music Class right now. The class is going very well. I am still teaching as well, and getting my students ready to put on a recital. Let me say that around the time of last year's recital, I was in the emergency room the night before and was very loopy from the pain killers, and dealing with terrible anxiety. I am so happy to be normal, to feel normal. I think that if I would have stayed on Valcyte any longer I would have checked myself into the mental institution. Of course I am half kidding but here were those days I felt like I was going bonkers from all the herxing and side effects!

I am really improving and hope to keep doing better. I go on substantial walks with my dog. I've consistently attended all 3 hours of church for a few months now. After my class is done in July I am going to be planning a summer music camp for my students. I'm really excited about this. I've been wanting to to do this for a long time and I finally have the stamina and energy to do it!

I am still being careful not to over do it so I don't relapse. I make sure to park near the building where my class is so I don't have to walk really far. I have a brother who attends the same university so I am able to ride with him some days, which is very nice if I am a little tired. I still make sure to go to bed early. I find I do best if I have 10 hours of sleep. That way I don't have to take naps in the afternoon. I still take breaks and rests.

3 weeks ago I did the bicycle test at the University of Utah. They can measure one's level of fatigue and pain through their blood. It is so cool. I know they need more men on the study who have CFS, so if you are a male and interested let me know and I can give you the information. The lady who directed the study has a husband who is studying the same markers in mice. He is actually giants leaps ahead of the game and creating drugs that help with fatigue. He originally found the expressions for fatigue in blood work through his study in mice. It was very fascinating to talk to the scientists. I should be getting my results from the test in sometime in June. I am very curious to see how I did. I did have a little soreness but I was not set back by the 25 minute bike ride.

I want to thank all my friends, online friends, and family for the supportive comments, phone calls, and emails I've received. Thank you for your love and encouragement as I continue to improve.

Positive Signs

I have been doing so much better since my last post in January. I started Provigal, which is a medication for narcolepsy and helps one to be alert and have energy. I believe it helps me get through a long day. When I study I feel more focused and don't have that tired brain fog feeling.

I've been reading and listening to a lot of books on positive thinking and how to get what you want out of life. The theory is what you think or send out to universe will come back to you. You have to not doubt and think positively and believe that you will receive what you ask for. Each day I write down what I want to create for that day. I write down that I want to be healed and everyday things like, I want to study chapters 5 and 6 for my Biology test. I'm finding that this really helps and I'm not doubting anymore and truly believing that I can have good health and live a full life.

I am a very religious person and I have a strong testimony of the atonement of Christ. I know that he suffered for our sins and struggles and knows what we are going through. I believe that there is tremendous power in believing on his name I know he can heal us, just as he healed the blind, the leapers, and the lady with the issue of blood. Having faith in Jesus Christ has helped me in my healing process.

I went hiking two weeks ago and I didn't crash the next day or the day after. That was amazing. I went roller skating this week and did fine the next day. At the end of each day I feel like I am accomplishing a lot. I finally feel like my old self. I want to be around people and go out. My doctor encouraged me to be more social since my job, piano teaching, keeps me at home. So I am taking her advice. I still pace myself and stop if I know I'm doing too much. I think a lot of the secret is planning ahead. For example; coming Friday evening I know I'm going to be spending at least 4 hours adjudicating piano students so I'm not going to go out all day. The last thing I want to do is relapse so I'm still being careful.

The University of Utah has asked me to be in a study to find a potential Bio Marker for CFS. I have to go and get my blood taken and then ride a bicycle for 25 minutes. I believe they take my blood right after I'm done, then take it again at 24 hours and then 48 hours. The theory is that CFS patients experience post external malaise, especially after exercise. Apparently there are ways to measure this affect in the blood. This could be a potential diagnostic test for CFS, which would be wonderful since there is no kind of actual test as of now to prove if one has this illness. Doctors would then take the illness more seriously which would raise public awareness. A ripple effect. So I am really excited about this experiment!