Tuesday, June 21, 2011
Right after my recent diagnosis some good friends of ours the Talley's took us out to talk and pray for us. During our conversation Dave mentioned that we should talk with a guy from our church named Dan who owns his own health and wellness gym close by. He said that he has been able to do some amazing things for clients with dabilitating diseases and illnesses. A few days later at church Jason and I found Dan and talked with him. He was a nice guy and seemed like he was knowledgable about my diagnosis and things he might be able to do to help. Today I had my first appointment with him. This guy is such a great guy. I walked away from our meeting feeling so encouraged. He put me through a series of machines to test my strength. Everytime he discovered a weak muscle he said that's okay this is what we are going to do to gain the strength back. He spent time explaining how the muscles work and I wanted to cry because I was doing some things I haven't been able to do and he was pushing me and encouraging me the whole time. The Lord has really given him a gift to help others and he recognizes that our meeting is not by chance. I really needed this meeting. I have been feeling so discouraged lately, confident that the Lord is using me in this difficult time but dealing with a lot of sadness that I do not want to be a burden to my husband and children. I want to keep fighting as hard as I can and not let this disease get the best of me. I was just not sure how and today I found out how and it feels so good. I struggle with putting something so personal like this out there but I know that the people reading this are praying and supporting us through this time.
Wednesday, June 15, 2011
After a few of you have asked I realized that I have not given any updates about my recent diagnoses. Yesterday I met with another Neurologist to get his opinion. He quickly diagnosed me the same. He said I showed classic signs of Myatonic dystrophy type one. During the exam he explained what muscles have been effected and which have not yet been effected. He explained that our children have a 50 percent chance of getting this disease. He did not recommend us doing genetic testing for them but feels it is extremely important to have there hearts checked regularly. He had a more positive outlook on things. It has still been a lot to take in. I will be going through more rounds of testing. Sleep apnea, swallow testing, and heart tests. I will continue to work with trainers to try and build up some muscle. I have joined an online support group and I'm trying to learn as much as I can about the disease. I'm giving it over to the lord daily and asking him to use me in every situation to give him the glory. Some days are better than others. The things you can be praying for is wisdom on how to navigate through decisions, an increase an energy levels(we are trying different vitamins and are open to suggestions) and that I would continue to keep my eyes focused on him and not wallow in this disease. Thank you all who have been so concerned and encouraging. I feel so blessed to have you all in my life. We are looking forward to a fun and relaxing summer.