Hello! I'm so glad Erin started this site. Not only will this help our family but I am constantly striving to help others in similar positions. This gives me another outlet to show what its like having this disease. This disease is called Microvascular Dysfunction I might call it CMVD (C for cardio) or as the beast.
I thought for my first post I'd just let you know that for now I'm a true stay at home mom. Rarely can I run my 5 year old son around town to his activities or take him to go for a hike or to play in the park. I did when he was younger but this disease has progressed to the point that even as I sit here I have chest pain that I'm treating with medications that people use in hopes that they will not have to go in to the ER. This is an everyday thing for me. Some days are good some not so good on the pain scale. Today, not so bad I'm sitting up at the computer for the first time in almost a month! I can't believe it. Phillip my husband says he knows I'm feeling okay when I'm on FB.
Phil and I have been married for 10 years now. We all change in a lifetime, I seemed to change pretty fast in a short amount of time. Phillip married a person whose body could go skiing and snowboarding, hiking, motocross riding, mountain biking and many many other activities we loved to do. In fact for his wedding gift from me he got a rock climbing harness...much to my moms dislike. He is the sexton of a cemetery and holds down a full time job thankful that we have this job because it also provides us with health insurance through this. He is a strong man physically and mentally. He has stood by me and held my hand during tests and times when I was sick. He is the man of the house and for the most part does everything the typical female role would do as well. He is a great cook thanks to his mom. He is also in a band and is a very talented guitar player. He never complains though his work load is high and a lot is asked of him everyday. Many days he is my caretaker and does everything a paid nurse would do. He says he could be a nurse with all he has experience with he has been in charge of my picc lines that I've had and administering my meds through IV's and also my oxygen needs as well. I think he is pretty great.
Then there is my little man, Bradach. He is my strength. Through my blogs you will probably come to the same conclusion. He is a typical spirited little 5 year old boy who loves to do everything and can't sit still to do any one thing. He is also very funny telling these jokes that I think are in code but we just don't know the code ;) He is also a very compassionate little boy who has seen a lot in his short life. We always try and keep grown up problems for the grown ups but this is one of those things that you can't hide a week or even month long stay in an ICU. Information on not touching my meds is also a very important thing that if kept secret could hurt him. He like Erin's kids wear their thumbs red but to him its because his mommy has a sick heart.
I would like to think my heart is whole and happy. It's full of beats that at times definitely let me know they are there but none the less I'm glad that it took a beat!