Saturday, February 20, 2021
We Saved a Baby Bull Again !
Friday, February 19, 2021
Dr Idiots and the Weather
Went to a neurologist for my uncontrollable shaking with a list. He valiantly tossed it over his shoulder and said “anyone that brings me a list like this I handle by doing THIS.” Never have been back.
I went to a podiatrist to get fungus on my toes checked as it seems to have “spilled” onto the toes it is on. He said not to worry about it. I told him I was susceptible to systemic fungal infections and I wanted to be sure it was cared for. He asked why I am susceptible to them I told him my CD4 numbers and he rolled his eyes and said, “if you had those numbers you’d be dead. Don’t worry about it” as he walked out the door. 🙄
I went to a hematologist and he looked at my numbers and said, “I don’t believe those numbers. I don’t even know if they are yours!” He did give me iron twice, but assured me I would be dead IF those were my numbers.
I went to an Infectious Disease Dr who saw my numbers and walked me out the door because I was “too susceptible to be exposed to the germs that could be in his office.”
🤦🏻♀️
I could go on and on, but I won’t. I haven’t had good luck with specialists - even with documentation, and apparently I didn’t have luck with my Louisiana Drs who left me undiagnosed for 32 years.
I was 54 when I was finally diagnosed with Idiopathic CD4+ Lymphocytopenia and 56!when my igg antibodies plummeted and started IgIV, which are human antibodies to replace antibodies that my body cannot make. Evert4 weeks, I get 21 days supply, but the expense of ($7,000+) Dr tries to stretch it to 28 days.
Enough. So many PI patients go through similar scenarios. Very few Drs know what a primary immunodeficiency is. Can you believe that? We have 2,270 members in my Facebook group with one kind of PI or another. Drs need to know about them. Nearly all of us have to teach ER staff, specialty Drs and GP’s.
That’s all I will write about Drs.
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Nothing medical except I am sick of sinus infections and today I shook so bad I couldn’t work a puzzle.
The weather...
This last 10 days have been miserable weather wise. Just thought I would post the stats for the future. We are on the up end of it for now. Gotta love La Niña years.
Wednesday, February 17, 2021
My Problem With Drs; Part 1
Photo just because...
I have been sick for years. Many, many years I caught everything and had a chronic sinus infection.
I was with a team of Drs who oversaw my care for 32 years. I trusted them both, but mostly saw one. I kept asking why I always seemed to have a sinus infection. His answer was “because you live in south Louisiana and are allergic to it.”
I got a yearly physical with my husband’s company and it said my lymphocytes were low. I would alway ask my Drs why my lymphocytes were low. Every year for 16 freaking years, I asked why they were low. He said “Because you have a sinus infection!” For 16 YEARS! If he had bothered to do a subset test of my lymphocytes, he would have found out I was in dire straits medically.
We moved to and from from Singapore and eventually sold our home in south Louisiana and moved to Oklahoma. I went to an immunologist for my sinus infection. She listened to my frustrations and in 15 minutes told me that she suspected I had an immune deficiency.
She also asked if I was sick all the time. My answer was, “no more than anyone else.” She said, “Strange.”
She tested my allergies with the shots in your arms and back; 300+ actually. I did not test positive for even one - not even the false positive. That was the second time as I had the same results with my immunologist in Baton Rouge whose statement was, “very strange”. Nothing else was done.
She kept testing. It took 8 months for her to diagnose me with a very rare and serious immunodeficiency: Idiopathic CD4+ Lymphocytopenia. Nothing can help and she assured me I would soon die. Then, since she couldn’t help me, she dismissed me from her care “as I can’t do anything for you to help. Good luck.”
It took another year of going to a Drs and them walking me to the door as I “was in danger being in their office”. Frustration was high so I went for a long time without a Dr. Finally on an immune deficiency Facebook board, a nurse had me come in to her Dr. I told her she had to SHOW him my blood results and be sure he would see me. She did and he blocked off 2 hours for me. He is still my Dr.
One time I told him about my immunologist question about being sick all the time and me telling her no more than usual. He stopped what he was doing, and said “she should have asked if I had ever been well.” It was like a reverse movie in my mind thinking of all the times I was well and I’ll be darned if I could think of even one! I remember going to an ENT from the time I was 4!!
I said to Dr, “Good point.” His response was “you have never been well to know how it feels because your entire life you have fought this.”
So that is my ICL story. Drs do not know how I am still alive but I guess the Lord isn’t ready for me and my body has worked around the t-cell deficiencies.
I would love to find any Dr who would care for me doing physicals and not so much my immune system. I have finally got an amazing Immune Dr who focuses on immune problems, but physical stuff? Not so much.But I don’t like being walked to the door when I go to a Dr.
I am writing this because I know someone needs to see it. Someone else has an immune deficiency that they don’t know about and realize Drs don’t know it all. If you are sick a lot, get to a CLINICAL Immunologist, please.
Tuesday, February 16, 2021
A Few Farm Shots Today
Monday, February 15, 2021
It Is Freaking COLD!!
Negative 2!!
I need this many layers. My glasses do come off because they fog.
Wednesday, February 10, 2021




















