Hi, my name is Elaine. I am the mother of four children. My boyfriend and I have been together almost nineteen years. Our children are 17, 14, 10 and 9. My boyfriend is a CNC Machinist. I am a homemaker. I am unable to work due to health issues. I have been in the process of trying to get disability for four years now. I have struggled with muscle weakness and fatigue since i was a young adult. I have been unable to work since my youngest was born. Things only got worse in December of 2014. I was weak and developed double pneumonia. I was in the hospital for nine days. That entire time I was unable to do anything for myself. I was so weak. After this bought with pneumonia I finally got a diagnosis for the weakness I had been having since I was fifteen. I have CMS (Congenital Myastenia Syndrome). CMS is an inherited neuromuscular disorder caused by different defects in the neuromuscular junction. When my symptoms started in high school it was only once or twice a year and never last long. I called these times my episodes. As I aged the episodes came more frequently and also lasted longer each time. My first two pregnancies brought me some relief. I didn’t have any episodes during either. After that, thought, I started getting more and more episodes. It was probably 2006 or so that things got worse, The episodes were coming about monthly. The were lasting about a week. Leading up to pneumonia i was weak 2-3 weeks out of every month. On a bad day it was hard to walk, brush my teeth or hair and do daily chores. On a good day I was able to use the stairs into our home. In the early fall fo 2015 I finally found a doctor who knew what was wrong with me. Genetic testing confirmed his diagnosis. I am now on medication that makes life more manageable. Because of my CMS I have not been able to work. My boyfriend works 55 plus hours a week. We are trying to get a home loan now but are told we don’t have enough money in the bank. We have the money for a down payment but not to cover closing cost. He makes enough money to pay a mortgage and all other bills. We currently live in a mobile home. Our gas and electric bills are higher than people that live in a house.
We need to move soon. Our oldest graduates this year. Also our trailer is old and no matter how much work we do to the roof, it keeps leaking.
I do not like asking for hand outs but I am out of answers and options. I just want to give our kids a real, nice home. I want to be proud of our house. I want to have family and friends over. Right now it is embarrassing and too tiny. I don’t want a huge house, three beds with two baths and some sort or yard is all we need.
Thank you to anyone reading this. I appreciate your time and if possible anything you could give to help our family.
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