I'm a wife, mom, grandma/mom, writer, Author, (I am not my disease, I am not my grief)
I get through life with the strength of Jesus.
In 1990 I started getting off the chart migraines and in 1992 I fell to my feet in pain and fatigue and could barely stand up for 1 year. I lost everything as I was a single mom at the time. We lived in a small town and there were no doctors that could figure out what was wrong with me so they just said I had Fibromyalgia and migraines. I went 18yrs. being pushed around in the medical system with different drugs and pain med's, most which made me loopy or gain weight, so I stopped taking them. Needless to say I went through a lot of doctors trying to find the right answers.
I have not been out of pain since 1992, it's only gotten worse. Nerve damage, joint pain and extreme fatigue. I've been diagnosed with mixed connective tissue diseases such as Lupus, Arthritis, Osteoporosis, etc... I also have bone cancer (Monoclonal gammopathy) in my blood and bones that are dormant right now but I see my Oncologist next mo. for more blood and urine testing. This one does run in my family.
In the middle of all of this my precious oldest daughter was also showing signs of great fatigue and was diagnosed with chronic fatigue and Epstein Bar Virus, Mono. A few yrs. later just after having her 1st baby, we were told my daughter had stage 4 bone cancer in her jaw. She had no pain until her 5th mo. of pregnancy, found out when the baby was 3wks. old and went to rest 9mo. later.
Now after 13yrs. my granddaughter is showing the same signs that my daughter did but I'm on top of it this time. Early detection is key. TRUST YOUR MOTHER'S (PARENTS) INTUITION.
My granddaughter and I both have a high positive for Parvovirus. She is 6.5H and I am 6.8H. -- Extremely Immune Deficient -- NK Cells at 13 and I am 14. When they should be 70-100.
I'm now doing some research on my own as to whether my daughter also had the Parvovirus, as it can be passed through the blood to the baby. I'm searching for my daughters old medical records from when she was a teen and even when she had cancer. I'm thinking there could be some correlation to her babies high B Cells and her jaw cancer. My daughter had EBV and so does her child which can lead to Burkitt's lymphoma. They will be doing a bone marrow test on my granddaughter soon.
I feel like the nightmare is starting all over again.
I wrote a book on how to be an advocate for child, yourself and anyone with a terminally ill disease, intertwined with the story of what I went through with my daughter. It's a 2hr. easy read that you won't want to put down. "The Smile from The Other Side" by Lynette Norton
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