A cool breeze danced around me as I gardened an early June morning in northern Minnesota. The annuals were in the ground and the sun warmed my skin while I mulched the peonies. The serenity of the moment was interrupted by an insatiable itch at my hair line. I assumed I’d been bitten by one of Minnesota’s renowned misquotes. I reached to itch it and felt several small bumps. “Must have been more than one.” I put some bug dope on it and went about my day noting that it itched more than usual. Over the next few days the itchy area grew and by the end of the week it covered over half of my scalp. I was concerned that some strange bug had bitten me and thought I should go to the doctor. Well, my health insurance does not cover doctor visits, and it was only an itch, so I chose not to go.
The timeline after that day is a bit foggy for me because trying not to scratch was demanding my attention, using my energy and self control. Scratching, while deeply satisfying in the moment, only made things worse. I noticed a patch start on my right fore arm that quickly spread to my entire arm. Then my left arm. The itching was unbearable at times – it felt as though hoards of mosquitoes covered my arms and were biting all at the same time. I scratched until I bled. I tried every over the counter medication I could get my hands on an nothing eased the discomfort for more than a few minutes. On the hottest days of summer I wore long sleeve shirts to create a barrier between my arms and my fingers so I would not scratch too deeply. The emotional toll grew.
I assumed it could not have been a bug bite and started to apply Echinacea oil because I heard it was good for skin issues and I altered my diet in case I was suddenly allergic to some food. I cut out cheese, milk, eggs, meat, bread (gluten) and most sugar. I allowed myself a square of good dark chocolate each day. I dubbed myself a vegan, although I am not really sure exactly what the criteria for that is. I ate organic when I could an thoroughly washed all fruit and vegetables. I thought I would feel deprived going to a diet like that, but my desperation made it easy. After two weeks I stopped using the Echinacea oil because it didn’t make a difference.
Then the rash started on my stomach, and my sides and then my back. I woke in the morning with blood spotted sheets and bruises. I scratched so deeply at night I bruised myself. I started taking antihistamines, but I was not convinced they were helping. I was afraid to stop taking them because I feared it would get worse.
Desperate, I called the nurse hot line and they said I should see a doctor and she made an appointment for me. I finally made it okay to go and I had to wait. The waiting was unbearable. They’d say “only a week.” A week to me meant seven 24 hours days, 168 hours of agony – way too long. At a suggestion by a friend I tried Organic Hemp Oil, but after three weeks I stopped because that was not helping.
At the appointment the doctor looked at the rash and asked a lot of questions. She was being thorough and admitted she didn’t know what was causing it. She ruled out lymes disease and I felt some relief. She declared it eczema and admitted that’s a generic word often used when they don’t really know what is causing a skin condition. She told me I was doing everything right to figure it out and then said, “There is a chance you my never know what is causing this, and you would not be the first one. Sometimes this just happens.” Discouragement overwhelmed me. Then she suggested a skin biopsy to rule some things out and I agreed. At that point she could have suggested a skin graft and I might have agreed. In addition to the biopsy I was given a steroid shot to hopefully kick the rash back. I was also instructed to go off all supplements and medications (including my antidepressant) for a month just in case there was an ingredient in them that was causing the issue. I went home with a prescription for some topical medication (Triamcinolone Acetonide and Betamethasone Dipropionate Lotion) for the itch and a stronger antihistamine to take at night while I took Benadryl during the day. The plan was to see how this played out and then make another plan if needed. Perhaps see a dermatologist. I couldn’t understand why I wasn’t seeing an allergist, but I was not thinking clearly enough to ask.
One good thing I can say is that I slept pretty well after that, I remember I was so out of it at night from all of the antihistamines that I’d wake up itching and quickly fall back to sleep like the itching was nothing more than a bad dream. In the morning the new bloody scabs, bruises and scratch marks indicated it was not just a dream. In addition I was far from alert during the day. I had a constant need for a nap.
Work and social settings became extremely difficult. I could not stop scratching and it was obviously making others uncomfortable. I could not concentrate on the task at hand for long or focus on what was being said to me. I discovered the only place I could find peace was sitting nestled into the corner of the couch so every possible area of my back and sides were pressing against something, which seemed to reduce the itch. I watched TV for a distraction and worked on small scratchboard artwork. My life shrank smaller and smaller. I began to avoid social settings all together. I stopped exercising because heat or sweat made the rash worse.
When I shared what I was dealing with I found there was always an eczema story they had to share. “I have this patch on my arm that I’ve had forever that really bugs me.” I’d quietly look at the quarter sized patch resisting the urge to pull up my shirt and show them what a real eczema issue is. I struggled to be compassionate while I listened and for the “helpers” who spoke out. I bit my tongue when offered another sure fire solution. “Have you tried oatmeal baths? My aunts best friend used that it and it helps her.” “Have you tried Epsom salt baths?” “Have you tried baking soda baths?” Have you tried… became the intro to a sentence I didn’t want to hear. I knew the “helpers” were only trying to show they cared and felt a need to assist, but instead of helping I was left me feeling miserable, misunderstood and alone.
The results of the biopsy came back and it was a non-specific allergy. It wasn’t cancer or some other scary thing so that was good, but I would have like a much more specific answer. I began to wonder if it was something in my environment. The culprit is generally soap, shampoo and laundry detergent. I bought hypoallergenic everything. I went on line and found a site that described how to sanitize your washer, which I did. Then I proceeded to wash all my clothes and bedding, dirty or not. I was determined to remove anything that was an issue that I had control over.
Two weeks after seeing the doctor, taking the antihistamines and using the cream, things were just getting worse. It had started to move down my legs. I applied the topical cream and it helped for short periods of time. I applied the cream on more and more often. My mood had deteriorated. I didn’t handle things well emotionally and found myself crying more than I liked. I was moody and acquired a fatalistic mentality. “My life sucks and its never going to get better. I can’t do my art. I can’t be with people and no one can help me.” I think you get the dark painful drama queen trip the lack of antidepressants had me on. I’d dreaded going off the anti-depressant, but I understood why I needed to. Now I questioned the wisdom in going off in the midst of such an emotional struggle, it was torture. I counted down the days until I could go back on.
I had to do something so I decided to use more than one approach to figuring out this mystery and made an appointment with a homeopath. At that appointment I was asked a few questions and a series of kinesiology testing was done. It was determined that I was dealing with a fungus. That didn’t make sense to me, but neither did anything else I was dealing with. I bought and took the remedy over the next few days with great anticipation. She also recommended a body cleanse so I got the Garden of Life Perfect Cleanse and following the fungus treatment I did the cleanse. They both could have helped my body, but nothing changed in the rash department.
Another trip to the doctor got me another steroid shot and a referral to the dermatologist for patch tests. But I had to wait another month to six weeks. The second steroid shot slowed the rash on my arms and legs and the scabs began to heal.
I continued with the bath treatments of oatmeal, Epsom salts, and baking soda. They were great while I was in the tub. After I got out the itching could be worse than before I got in. I debated about just living in the tub, but you can only keep the water in a tub hot for so long. I pondered getting a bigger water heater. I knew soaking in the hot water would set the rash off, but I consoled myself with the thought that was getting toxins out of my skin, and the respite from the scratching was worth it.
For two weeks I stopped drinking tap water or taking showers or baths that might have chlorine or other chemicals in them to see if that made a difference. I bought bottled water for drinking and cooking. For bathing I’d let the water sit in the tub a couple of days for the chlorine to dissipate. Not scientific at all, but I felt like I was doing something. It didn’t make any difference either.
My Road to an
Bug Dope for Initial Itch
Benadryl & Allegra
Oatmeal, Epson Salts, Baking Soda
Organic Hemp Oil
See the Doctor
Switch to Cetaphil
Prescription Creams & Lotions
Second Steroid Shot
Food Stats Antibody
Assessment Blood Test
No Polyester Clothing
My Foe is Determined
After nearly three months of the rash I was back on my meds so the dark drama queen voices had quieted. I made an appointment with another homeopath who could do a blood test called the FoodStats Antibody Assessment for a General Food Panel: IgG. Other than the blood test she didn’t have much to offer that I’d not already tried except Caster Oil in stead of the prescription medication. She suggested I stop using the prescription medication because it thins skin. I felt a wave of panic when I thought about how much I’d slathered on myself. She also suggested that I might have issues with salicylates found in foods. She handed me information on salicylate-free foods. My head spun as I looked down the list of foods I’d have to give up. Everything. I left her office with a supplement – a pro-biotic. I wasn’t sure how that was going to help because I was on overload and could no longer hear what she said to me, but was happy to take it if it could help.
I went directly to pick up some castor oil at the coop. Sitting in the parking lot I applied it to the rash on my back and felt soothing relief. It didn’t stop the itch, but it soothed it and I felt my whole body relax. I was elated. It was a small percentage of the price for the medications the doctors had prescribed and gave immediate relief. I went back and bought a second bottle. I religiously used the castor oil and soon found I could not use it as often as I wanted to. It stained my clothes and bed sheets. I set aside some clothes to wear when I used castor oil.
The wait for the blood tests seemed to take forever. While I waited I noticed some of my clothes felt prickly. I started putting the clothes that bothered me in a pile on the floor not paying much attention to what they were made of. Some clothes found themselves in the pile within a minute of putting them on. I knew it wasn’t the detergent so I got the pile off the floor and discovered they were all made of polyester. I didn’t think anyone could have a problem with polyester, but just in case I stopped wearing it.
The results of the blood tests came and I was delighted, surprised and discouraged all at the same time. I was delighted I was not allergic to any foods and I didn’t have to give up any of my favorites. I was surprised there was no answer in the food department for the rash, and discouraged because if it isn’t food what the hell is it? The blood tests showed that I should stay await from kidney beans, string beams, whey, and whole wheat. Those foods cause inflammation in my system and I didn’t need any more of that right now. A food sensitivity is not really an allergy, but any inflammation exacerbates an allergy. I eased up on my vegan diet, but was going to keep some of the habits I’d established because I’d dropped fifteen pounds. I focused ahead to the dermatologist appointment.
Four and a half months after the first onset of the symptoms the diagnosis came from the dermatologist. An allergy to Thiuram Mix, Thimerosal, Gold, Paraben and most likely Polyester. No instructions on how to move forward, just a handful of papers and a suggestion to do a lot of research. At least I knew my foe and I could begin to take this allergy head on.
For more information on what happened at the Dermatologist appointment go to the blog post The Diagnosis.