The super frustrating part about this experience was how the doctors I saw made my problem worse. When I first met with a dermatologist in late July, she was really concerned about my natural soap and advised that I switch to this line of "allergen-free" products. She set me up with samples and encouraged me to make the switch. She also wrote me a prescription for a special shampoo because she thought it might be helpful for me. I switched to the soap and shampoo she gave me and tested out some of the other stuff. The other stuff was irritating to me, so I didn't use it for long. I stuck with the soap and shampoo, though. Then, I kept getting worse and worse or I would show some improvements for a day or two and then get way worse.
Since things were getting rapidly worse, I went in to see another dermatologist at the beginning of August. He referred me to the patch clinic, set me up with topical medicine, prescribed a long, tapered course of prednisone and affirmed the other dermatologist's recommendation for the Vanicream products and prescription shampoo. Right before my patch testing, I became suspicious of the prescription shampoo so I switched to the suggested shampoo and conditioner from the Vanicream line.
It took over 2 months to get into the patch clinic. I then went through the intensive testing, bringing in my suitcase of products for each of the 3 appointments. The whole point of the testing process was to determine what products are safe for me to use. So, on the day where I got my results, the doctor looked through my products and picked out which ones were safe for me to use. The game plan I was given was to exclusively use those products for 2 months and then have a check-in with my dermatologist.
For the first week, I did just as she said. Using only the handful of products she had approved. I got worse and worse and worse. By the end of the week, I was physically and mentally a mess. It had been such a long road to get to the patch testing and by all accounts, that was the last stop on my road of options. If those test results didn't solve my problem, the doctor told me that was all she could do for me. I was feeling pretty beaten down by the whole ordeal.
After a bit of a breakdown on a dog walk and some kind and supportive words from Paul, I decided to start from scratch (ha! not punny!) and be my own doctor. I took my test results and all of the products I had been using and scrutinized everything. What did I find? What was right there on the label not even hiding under an alias? PROPYLENE FUCKING GLYCOL! Right there on the label of the products I was told to use. Thanks to the instructions from a patch clinic doctor, a supposed contact allergy specialist, I was dousing myself with an allergen every time I washed my hands, took a shower or walked around with my hair on my head...which, as you might guess, was ALL OF THE TIME!
I was so angry and so amazed that the doctor could be so neglectful. This is her specialty! I haven't told the patch clinic what happened yet, but I plan to. I can't let that go. She needs to do her job. I thought about saying she needs to do her job "better", but that isn't right since she didn't do her job at all.
I am not as upset with the first two dermatologists I saw as they didn't have the test results to work from. But, still! I would have better off if I had kept using my own products. I was right to have suspected the prescription shampoo as it ended up containing multiple allergens. No wonder my skin was so angry!
And, from there, I began my own quest to eliminate as many allergens as I can from my products, from my house and from my diet. It is not proving to be easy. I feel the need to say here, that I know many people have allergies, some of which are farther reaching and much harder to cope with than mine are. That said, this still really sucks. I am at my 2 month mark since my testing and I have yet to find products that don't make me sick. I am less sick, but I am still irritated and limited by my health.
Here is the silver lining:
At least it only took me a week to realize that the doctor steered me wrong.
I have some concrete test results to drive my changes.
Most of the things I need to remove from my life are bad for people, so everyone in my house will be better off in the end.
I am capable of doing the work it will take to sort through this.
I have access to alternative products.
I have resources to support my needs (at least most of them).
I am a DIYer, so I am not afraid to make my own alternative products.
And, most of all, at least I am not as miserable as I was last summer!