Thursday, January 22, 2015

More tests for me and my kids.

Usually I hate getting tests done or blood drawn, however I have come to love it. The more test I have done, the more I learn about what it is I am dealing with. The more I learn about myself, the more I learn about my kids. I worry about them so much.

My kids are just like me. They have the same issues and act the same way I did when I was a kid. The genes aligned in such a way that all my kids inherited the EDS and FMS. I am sure it is because I got it from both of my parents. I can see it in both sides, from my father's mother and my grandmother's father. All I need to do is look at family pictures and I can see the physical traits. I can't stop researching everything. I need to know more. I ask questions about family health history and do more research. I need to find to out how I can help my kids to not feel like I do. I am suffering and the last thing I want for my kids is to suffer.

So more tests. It has been shown that my 7yr old also has symptoms of orthostatic intolerance. After just 2 weeks on fludrocortisone she felt better. She commented that she didn't know that it wasn't normal to feel spacey and dizzy until it was fixed. She says that it is easier for her to listen in school and to do the whole gym class as well. She is too young for a tit table test. The cardiologist just went on family history and symptoms. I just wish she had the energy to do her homework too.

I refuse to believe that our overwhelming fatigue isn't caused by something else other than EDS and FM. Lots of EDS people don't have the kind of fatigue that makes them unwilling lumps on the couch. Many of them lead lives and do stuff.

So more tests. Either we are just doomed to a life of suffering and pain, or there is something we can correct that will allow more quality to our life. Maybe my children will be able to finish college and contribute to society, support their families, and be happy. I am none of those. Maybe these tests will provide data to help other EDS'ers who have the same problems. Maybe I will contribute to society. This is how I could do it. At the very least I need to make sure my children's quality of life stays at a level they can live with.

We are so close to the end of the tests and specialists we can see. Please let there be that one more answer that will restore some of my functioning. I am not asking for much. I just want to be able to do basic household chores, help my kids with their homework, manage their conditions, do the shopping, go to church things, and have the energy to go to yoga, swimming, or walking with my kids. These are the things I was able to do before this last set back, including making homemade bread and sewing clothes. Most people have a full time job on top of that plus many hobbies. I am left with a few chores a day, either putting away clean dishes and stacking dirty ones or washing dirty ones and cleaning the table and counters off, washing and drying a few loads and shoving just my own clothes in my drawers or taking a shower and brushing my teeth, and driving the youngest to school or do the grocery shopping. I have to sit down after just 10 or 15 minutes. I get so body weary and I just can't do it. I don't want my children to feel like this. So more tests it is. 

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