The story of Euvah
I have been ill my entire life. At 3 years old I walked miles to an ENT with my grandmother regularly, got shots and a prescription for an ice cream cone at the drug store. In my teens, I had multiple female operations from cysts, tumors, endometriosis, and polycystic ovarian disease. I have had an appendectomy, gall bladder removed, ulcers and GI bleeds. I also have had a chronic sinus infection for at least a dozen years – but I suspect much longer. I went to multiple doctors trying to find an answer. They just shoved antibiotics at me or treated me like a thorn in their side. I asked my hubby over and over why I couldn’t get well without multiple Dr visits – and then not well, just better. We certainly had no answers.
For all of those years I had an annual physical which showed low lymphocytes. I continuously asked why, but was repeatedly told “you have a sinus infection”. Finally in 2013, we moved to Tulsa and I went to a doctor here who immediately suspected a Primary Immunodeficiency. After 8 months of tests and repeated tests, one being a subset of my lymphocytes. Low and behold, my subsets provided the story; and after more testing, the CDC called me to confirm my diagnosis; Idiopathic CD4+ Lymphocytopenia. Non-AIDS related, HIV neg, basically the same but non-contagious. My CD4 & CD8 counts are beyond critical. NIH doesn’t understand why I am still alive. I just smile and say God’s not finished with me yet!
There is “no hope and no cure”. With less than a hundred of us known in the USA, the study is just that. A Study. No reason for them to frantically find an answer and no reason for me to still be alive, but here I am surviving and rocking it!
My motto? Keep on swimmin’!