A Long, Long Journey to Recovery: Where I Started
Chronic Idiopathic Urticaria: The Chronic presentation of swelling and hives.
Prior to receiving a diagnosis for CIU I made frequent trips to the ER basking on the verge of anaphylaxis. I either made it to the doctors hospital cubicle where they would shoot me up with IV steroids, epinephrine and Benadryl or collapse in the parking lot as I desperately tried to make my way through the Emerge doors. Then I would wake to find myself in excruciating pain, lying in a hospital gown in a room by myself, wondering what the fuck had just happened. The tears would come as a raging fever set in and rendered me useless and bed ridden for days.
One night I woke up at home in bed completely unable to move from the waist down. As my daughter lay asleep in her bedroom I lifted each leg one at a time using the force of both my arms to swing them over the side of my bed. I fell to the floor and pulled myself to the bathroom toilet. In that moment, fear and panic set in because now what was I to do? I called my friend over who ultimately carried me down several flights of stairs to my car, woke my daughter and put her in the back seat and off to the hospital we went. At this time I would not dare risk the $20,000 ambulance ride to take me 5 miles to the local hospital.
One morning I dropped my daughter off at preschool and ended up driving across the street to the hospital because while I was suffering from chronic hives and inflammation I started feeling like I was on the verge of something more. When I got there I was administered a dose of epinephrine and instead of suppressing my symptoms it actually worsened them and sent my body into a full fledged fever. I was admitted once again, but this time with the idea that I was now allergic to epinephrine which was scary and seemingly absurd to everyone I had mentioned it to.
During these bouts of hospital visits I was repeatedly “tested” for auto immune diseases with the outcome always leaving the doctors scratching their heads. No autoimmune issues were coming up but I remember commonly hearing that my white blood cell count was elevated. If only I knew then what I know now.
Yes, I was allergic to epinephrine and everything else under the sun because my mast cells were over reacting and producing far too much histamine for my body to filter. My white blood cell count was always elevated because my body was fighting off what it thought to be various irritants or infections. The overreaction was causing me to constantly react to everything, even to drugs that were supposed to help.
It wasn’t until I gave up everything I had worked for and moved back home to Ontario, Canada that I received an initial diagnosis of Chronic Idiopathic Urticaria. This is where my journey to understand what was happening to me started.
Even with the initial diagnosis of CIU after first seeing multiple doctors and clinics, I never learned what was actually happening to me. CIU itself is merely a diagnosis of persistent symptoms not of the root cause of the issue. It took me over 4 years to learn about Histamine Intolerance and how to really treat my condition. If you are reading this And suffering as I did, I hope these blog posts help you to avoid years of turmoil, pain and destruction.
Thanks for reading and come back soon for more on CIU and other related issues.
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