I feel this is an appropriate title for this post. I keep hearing “Where are the Clouds?” in my head. All I can come up with is “Don’t bother, they are here.” But actually, I am feeling much better than last week. Besides IVG Gammagard infusions, I had a viral stomach bug last week. My mother came down with nausea and dizziness today. The medication seems to be helping her.
My weight has dramatically dropped since last week, I weight 112 lbs. now in shoes and clothes. The head nurse of the home infusions services said I would get pre-meds next time to reduce the after effects of infusions. My question is why wouldn’t that had been done this time?
I have silent challenges and unspoken prayers. In fact, I would rather you no longer “say” that you will pray for me. I want to see action instead. I’m mad, which is good for me. I work best when I’m mad or enlightened about something. I’m right at that point of seeking life-changing answers.
This all started when I saw another orthopedic surgeon at St. Joseph’s Medical Center about two weeks ago. A long story short, there seemed to be some indication that this condition (even my neuro-muscular structure) was genetic. It was not verified or confirmed, but mentioned,
The reason why this is so important to me is because I would like some DNA testing to be done. I did speak to another doctor (OB/GYN) today about it. I can have medicare pay for it, due to the rarity of my medical condition. I need to do some research before seeking DNA testing. What would it entail? Blood tests or DNA strands tested. My sisters asked me that today, but I have no medical knowledge or awareness yet.
On the subject of DNA testing, I did speak to my parents today about it. I am their child and they should be consulted about it. My mother seemed more agreeable than I originally thought she would be. She said she didn’t feel guilt, although I never put blame on my parents for anything. I want to know if my medical condition of a rare autoimmune disorder is heredity through a recessive gene or is it structured in my DNA as a carrier?
I don’t want my relatives, especially my sisters, mad at me or the family embarrassed in anytway. It is not to offend or hurt anyone. It is within my God-given rights and I have that right to know. If you can’t acccept this, don’t read this blog. But please don’t preach to me or tell me that I’m hurting my parents.
As far as God, He has always been here. He is just been talking strongly to me recently. These are things that I should have done years ago. I just wasn’t as pushed as I am not.