The Milwaukee Post published an article over the weekend on Myositis, my journey and campaign to raise awareness. So far, the best outcome of that was a phone call I received yesterday. I got a call at work from someone who read the article. He was diagnosed with Inclusive Body Myositis (IBM) back in 1990. At that time, he had to travel to the Mayo Clinic in Rochester, MN to undergo tests and receive his diagnosis. The doctor told him there was no treatment, and no cure. This would be something he would learn to live with and he would die with. I was pleased to share with him that research is being done, not enough, but certainly more than was in 1990. I told him about the Myositis Center at Johns Hopkins and the TMA website. All resources to give him more insight, information, support and even hope for a cure and/or effective treatment.
I am very glad he saw the article and reached out to talk with me. I hope others will as well.
Over the next week or so I will be working through the numbers to provide a final number on my fund raising efforts.
Again, please accept my thanks and appreciation for your continued thoughts and prayers.
Wednesday, August 27, 2008
Tuesday, August 19, 2008
August updates
Hi everyone,
August has been crazy busy trying to fit the little bit of summer we have left into the month. Our family has truly been gone for most of the month of August. Again, the good news is that I continue to feel good. I believe that the homeopathic remedy I am taking was most effective in the first two doses and a little less effective now but I am still very excited about the results.
I did not get to see my doctor that first week of August because she was on call and her schedule was running more than an hour behind but we have spoken on the phone and agreed to a couple of things.
I started to taper the prednisone again. This is a really slow process moving down by one mg over a two or three week period. I am at 11mg right now (not bad considering I was once at 80 and spent a long time between 40 and 20). The 10 mg has been the bump in the road for me in the past however the factors continue to change.
Since the last time I got down to 10 there are two major changes.
1) the homeopathic remedy
2) I am working with a food coach.
A few blog entries ago I shared with you that Bill and I were going to go to a cooking class titled "eating for energy". We both learned so much in those two short hours regarding the effects of different foods on your body (muscles, brain, immune system, etc...). I am now working with Rachel (Real Life Foods food coach) on a one on one basis every other week for six months. Slowly I am learning to listen to my body and the learn the effects different foods have on my body. The last two weeks I did a breakfast experiment. Did you know that what you eat for breakfast may result in a late night craving that day or the next?
Have you ever heard of Quinoa?
Did you know that an artificial sweetener is 400-600 times sweeter than a natural sweetener?
I am learning so much and starting to unravel some of the things I have been doing for years.
Rachel is a teacher, a confidante, a motivator and my accountability partner. She encourages me to set goals that I will succeed at and to slow down and take time to enjoy food....good food, real food. If you want to read more about Real Life Food, go to www.reallifefood.com
Well, the above is about "Choosing Health", the next part is about "Sharing your Experiences"...
A couple weeks ago after giving my Myositis presentation at work one of my coworkers called me and asked if I would be open to sharing my story with a journalist. Yesterday I talked to Lee from the Milwaukee Post and he interviewed me for an article on Myositis. If it all comes together it will be in the Saturday edition. I'll make sure I get a couple of copies for anyone who wants to see it.
Giving back holds within it some very powerful and healing qualities.
How can you give back?
Thank you for your continued support, encouragement, prayers and MILES.....
I appreciate YOU.
klb
August has been crazy busy trying to fit the little bit of summer we have left into the month. Our family has truly been gone for most of the month of August. Again, the good news is that I continue to feel good. I believe that the homeopathic remedy I am taking was most effective in the first two doses and a little less effective now but I am still very excited about the results.
I did not get to see my doctor that first week of August because she was on call and her schedule was running more than an hour behind but we have spoken on the phone and agreed to a couple of things.
I started to taper the prednisone again. This is a really slow process moving down by one mg over a two or three week period. I am at 11mg right now (not bad considering I was once at 80 and spent a long time between 40 and 20). The 10 mg has been the bump in the road for me in the past however the factors continue to change.
Since the last time I got down to 10 there are two major changes.
1) the homeopathic remedy
2) I am working with a food coach.
A few blog entries ago I shared with you that Bill and I were going to go to a cooking class titled "eating for energy". We both learned so much in those two short hours regarding the effects of different foods on your body (muscles, brain, immune system, etc...). I am now working with Rachel (Real Life Foods food coach) on a one on one basis every other week for six months. Slowly I am learning to listen to my body and the learn the effects different foods have on my body. The last two weeks I did a breakfast experiment. Did you know that what you eat for breakfast may result in a late night craving that day or the next?
Have you ever heard of Quinoa?
Did you know that an artificial sweetener is 400-600 times sweeter than a natural sweetener?
I am learning so much and starting to unravel some of the things I have been doing for years.
Rachel is a teacher, a confidante, a motivator and my accountability partner. She encourages me to set goals that I will succeed at and to slow down and take time to enjoy food....good food, real food. If you want to read more about Real Life Food, go to www.reallifefood.com
Well, the above is about "Choosing Health", the next part is about "Sharing your Experiences"...
A couple weeks ago after giving my Myositis presentation at work one of my coworkers called me and asked if I would be open to sharing my story with a journalist. Yesterday I talked to Lee from the Milwaukee Post and he interviewed me for an article on Myositis. If it all comes together it will be in the Saturday edition. I'll make sure I get a couple of copies for anyone who wants to see it.
Giving back holds within it some very powerful and healing qualities.
How can you give back?
Thank you for your continued support, encouragement, prayers and MILES.....
I appreciate YOU.
klb
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