The Support Umbrella that I found at the IDF on the internet. I made many friends there that understood me. I didn't have to try to explain over and over again my anguish, they knew all too well and they received me with open arms! Just everyone who enters is received and offered all the information you could need or want on Primary Immune Deficiencies!
When I was first diagnosed with CVID, I searched for everything I could find regarding this disease that was ravishing my body and stealing the very breath from me. This is where I found a new kind of umbrella. An umbrella that would shelter me, no matter where, they were there... Zebra's. Beautiful, loving, kind, understanding, fierce and could also attack at any moment if needed! A strength I would grow to learn and people I would come to love and make life long bonds.
There is everything that you could ever need at the IDF, information even Dr.'s! They have committed themselves to bringing awareness and help to the world around us.
Check them out... you won't be disappointed! IDF http://idffriends.org/
Showing posts with label self help. Show all posts
Showing posts with label self help. Show all posts
Wednesday, August 24, 2011
My whirlwind with Chronic Illness
A whirlwind is the only way I can describe what has happened over the past 3 years. It began with a headache that wouldn't go away, another infection, another fever with muscle weakness and relentless fatigue. After struggling with many doctors, tests, hospital stays and ER visits, most doctors thought it was all in my head and fluffed me off as a hypochondriac. I was even starting to doubt myself.
I suffered from many strange GI/Kidney/Lung and Neurological infections that couldn't be explained. I went through many misdiagnosis's, only ending up in frustration and Medical Burnout.... Hanging onto the mustard seed of faith, we pushed on, traveling to Mayo, searching for answers. Through hundreds of lab tests and a spinal tap, they always came up with the same answers, low IgG levels and high protein. What was this IgG? Why were they low? As my previous Primary Care Physician scolded me, stating I was over reacting, doctors were smart enough to test these IgG's, but not one was smart enough to know what to do with them... She was fired. On the spot, that very day. After all, I was going to need a doctor that cared enough to search for answers. Listen to me, believe me and follow through without questions or doubts, finding another who knew what to do with the low IgG levels.
After finding a new Primary Care Physician, I was sent to a specialist. Something we hadn't heard of before. An Immunologist. This is the doctor that specializes in IgG levels, their diseases and complications. Keeping things as simple as possible for us, my new doctor proceeded to explain. The Immunologist knew what needed to be done, he knew what to do with the low IgG levels and what they meant. We met, he took my history, spoke with me and my husband for about an hour and than he put together a plan. We will draw blood. Test against certain proteins and will call us when the reports come back. Really? You will call me when they come in and explain to me what you think? I wasn't sure he would follow through, so many had told me the same things before. Resulting in the same things over and over again, no answers, no explanations.
Finally, 2 weeks later we had an answer, on a Saturday even! The lab work was in, the test results were confirmed. "Mrs. Dawson, you seem to have a condition known as CVID". Let me try to explain, he said. "We have tested against 23 pneumococcal proteins and you can not make any antigen to any of them. You have low IgG, IgM, IgD and IgE. We need to begin treatment as soon as possible with Immunogobulin therapy." This was all overwhelming to me. I didn't understand anything except that there was a problem, it wasn't in my head and the wonderful man had an answer! He went on to explain as simply as he could and set up an appointment for me to come in that following week. As for me, I came home that day and began searching everything I could on CVID. I entered a new world and life would never be the same again, for any of us!
I suffered from many strange GI/Kidney/Lung and Neurological infections that couldn't be explained. I went through many misdiagnosis's, only ending up in frustration and Medical Burnout.... Hanging onto the mustard seed of faith, we pushed on, traveling to Mayo, searching for answers. Through hundreds of lab tests and a spinal tap, they always came up with the same answers, low IgG levels and high protein. What was this IgG? Why were they low? As my previous Primary Care Physician scolded me, stating I was over reacting, doctors were smart enough to test these IgG's, but not one was smart enough to know what to do with them... She was fired. On the spot, that very day. After all, I was going to need a doctor that cared enough to search for answers. Listen to me, believe me and follow through without questions or doubts, finding another who knew what to do with the low IgG levels.
After finding a new Primary Care Physician, I was sent to a specialist. Something we hadn't heard of before. An Immunologist. This is the doctor that specializes in IgG levels, their diseases and complications. Keeping things as simple as possible for us, my new doctor proceeded to explain. The Immunologist knew what needed to be done, he knew what to do with the low IgG levels and what they meant. We met, he took my history, spoke with me and my husband for about an hour and than he put together a plan. We will draw blood. Test against certain proteins and will call us when the reports come back. Really? You will call me when they come in and explain to me what you think? I wasn't sure he would follow through, so many had told me the same things before. Resulting in the same things over and over again, no answers, no explanations.
Finally, 2 weeks later we had an answer, on a Saturday even! The lab work was in, the test results were confirmed. "Mrs. Dawson, you seem to have a condition known as CVID". Let me try to explain, he said. "We have tested against 23 pneumococcal proteins and you can not make any antigen to any of them. You have low IgG, IgM, IgD and IgE. We need to begin treatment as soon as possible with Immunogobulin therapy." This was all overwhelming to me. I didn't understand anything except that there was a problem, it wasn't in my head and the wonderful man had an answer! He went on to explain as simply as he could and set up an appointment for me to come in that following week. As for me, I came home that day and began searching everything I could on CVID. I entered a new world and life would never be the same again, for any of us!
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