An Encouraging Day

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.

updates

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.

God"s Unfailing Love

So Thankful for such a wonderful weekend spending time with the Lord. Friday my husband gave me a wonderful night away. I got to leave early friday morning and go get a much needed massage at Glen Ivy :) Then I headed down to Dana Point. I can not tell you how nice it was to be in the word and prepare for speaking at the ladies tea with out any distractions. I got some much needed alone time. It made me a much better mommy and wife when I returned Saturday afternoon. The Tea was absolutely beautiful. We have such talented ladies who are so creative with there tables. It was just so nice to be in the company of wonderful woman. After I spoke at the tea a lady and her daughter came up to me. They explained some ailments that there daughter was having that were very similar to mine. They explained that the doctors have never been able to diagnose some of the symptoms. They said she was so depressed and tired of not getting any answers. She has never seen a neurologist and had never thought too until hearing my story. I agreed to meet with the daughter some time soon. I was brought to tears. The Lord is already using this trial and if I were to choose to wallow in my diagnoses I would miss all that God is doing. He is always there and we need to trust him that he is working out his plan. It was a beautiful day. Saturday night was time spent with the family and then today has been a beautiful reflection on the book of Isaiah. Our church has spent the last couple of years going through the book of Isaiah. Today we had a reflection service and it was very moving. This weekend seems to be themed around God's Unfailing Love.

How have you all seen God's Unfailing Love ? I would love to hear.

A brief update

Last Friday I had an EMG test done. I'm not gonna lie it was just plain awful. I have bruises from all the needle injections :) The doctor said that he only found traces of the Myotonia in two areas of my body. He said it wasn't wide spread enough to get a confirmation of the disease. He would like me to do some genetic testing. This requires approval from my insurance. It is a blood test that needs to be read in a special lab. I left the appointment more confused and frustrated that we still did not have a solid answer and that it is going to take 6 more weeks until we know more information. The planner in me wanted answers so that I could move forward with the next steps. I quickly remembered that God is in control and know without a doubt that he will be building my patience and character through this long wait. I hate how I quickly forget how faithful he has been in my life and has always done amazing things. I forget to ask him for total healing. I certainly know he has the ability and he can choose to if he desires. I have requested to see another neurologist to get a second opinion. I could not get into see him until next month. I laugh because I'm always telling my kids to be patient and I often struggle with it so much more. I know I will eventually get answers so for now I will rest in the fact that I know my God is in control and he is walking with me every step of the way. Thanks for all your sweet words of encouragement and prayers.

Seeing God through the Craziness.

I apologize for being MIA. I have been extremely tired and busy. I have had so many ideas for blog entrys and no energy to sit down and post them. With birthdays, t-ball, homeschool, end of the year stuff, Easter, Mothers Day,The Ladies Tea, Husband traveling for work and planning his China trip life has been CRAZY BUSY. As if that wasn't enough. After a few years of trying to figure out my weight loss and muscle weakness we finally got some answers. I saw a Neurologist last week and he is pretty certain that I have Myatonic Dystrophy. Whaaaaattt? I know I had the same reaction. Not exactly the funnest words to hear. Myatonic Dystrophy is a form of Muscular Dystrophy. It is uncureable and the progression affects everyone differently. There are many forms so we are having tests to find out exactly which form I have. I really feel strongly that the Lord had been preparing my heart for this news. I was asked to speak at our Ladies Tea at church a couple of months ago. I nervously said yes. The theme is on God's Unfailing Love and I have been spending time in the word reading about God's love in the midst of suffering. This is no coincidence. Also the night before my appointment I was looking stuff up online. I was getting nervous as I read more life threating diseases that I had symptoms for. So when I got the news the next day I was thankful that the doctor did not say it was any of the ones I had read up on. This has been a lot to take in and figure out exactly what this is going to look like for the future. I know however that I just want to be used by God in every situation I'm dealt with. I know that he will use this for his glory and I will see him in beautiful ways. He has blessed my life in more ways than I ever deserve. We serve a wonderful God who holds us in the palm of his hand and wants only the best for his people. He never promised us a nice comfortable life on Earth but he has promised us eternity with him with no suffering and no pain. Oh how I long for the day to see my savior face to face. This news will not crush my spirit but make me believe stronger in the things My Lord can do. Nothing is impossible with God. He works together all things for good for those who believe in him. We would appreciate all your prayers. More details to come.

Celebrating the big 5

It has been so much fun celebrating our sweet Jonah's fifth Birthday. Yesterday we had a fun day doing things Jonah likes, cinnamon muffins, lunch at Chik-Fil-A and Pizza dinner with grandma and papa. Today daddy took a half day and surprised him with a trip to the movies just the two of them. We had a family party tonight and tomorrow is Lego Land. I will post pictures soon. I can't believe he is five. I pray he always keep that smile on his face and the ability to make others laugh. he is such a joy and I feel so blessed to be his mommy.

A Beautiful Week

I really enjoyed soaking in the beauty of the Resurrection story with my kids this week. We spent a lot of time in the word, reflecting and doing activities all having to do with the Easter story. Our church also held two special services this week. We had a Maundy Thursday service and Good Friday Service. After the Good Friday service Noah leaned over and said Mom I really feel Jesus in my heart tonight. I love that boy and how much he is growing in the Lord. Nothing warms my heart more. We had a full day of celebrating Easter with both sides of the family. Lots of food, fun and LOVE. It was an end to a beautiful day. Thank you Jesus for loving us so well and for paying the ultimate sacrifice for our behalf.