My third trip to the dermatologist was exasperating, but I am getting ahead of myself. At my first appointment a week earlier, the nurse put the T.R.U.E. Test strips on my back and sent me on my way. It had been a challenge for her to find a clear area. Clear means there is no apparent rash. At the second appointment she took them off and surprisingly the doctor came in for a quick reading of the results. She informed me I was allergic to Thiuram Mix, Thimerosal and Gold Sodium Thiosulfate. (My other allergies, penicillin, bee venom and Ibuprofen, had been determined earlier in my life.) With that the doctor left and nurse handed me an information sheet for each chemical and reminded of my third appointment.

I scanned the forms, not really able to take in what I was looking at. I shared my confusion about being allergic to gold with the nurse. “How come there’s no sign of irritation around my finger where the ring is, or my ears where the earrings are?”

“That’s not how it always works,” she said. “The outbreak could happen anywhere on the body, not always at the site. It can take up to four days for a reaction to show.”

I asked why my polyester clothes were causing a rash. I was confused about whether they were on one of the lists she just handed me .The nurses said it was probably my laundry detergent. I told her that in an effort to figure out the rash I had switched weeks ago to hypoallergenic detergents and sterilized my washer. Her response was, “Well then it sounds like it could be polyester.”

The answers were so vague. How the hell I was going to figure things out without more information? How do I track my skin’s reaction to something I touch if I have to wait four days? I’ll have touched a lot of other things by then. I didn’t even know what to else to ask her. It was discouraging.

After all those weeks of eating vegan in an effort to discover what food was causing this rash I never thought I would wish it was a food allergy. That seemed easier. I felt my brain shutting down as I tried to read the sheets she gave me. I left the office and reached the car not remembering walking out of the building.

In my desperation to get rid of the itch I drove directly to the jewelry store. If gold is one of the culprits, well, I could do something about that right now. I sat outside the store looking at my mother’s engagement ring that I had worn for the past 33 years. I put it on my finger the day my Dad gave it to me and never took it off. Now a jeweler was going to have to cut it off. Over the years my knuckles had grown too large to remove it myself. I was in tears staring down at the ring. I hoped I’d be able to contain myself inside the store.

Inside, I told the clerk why the ring had to come off. He looked at me sympathetically and quietly got his tool. I held my breath as I watched as tiny flakes of gold dropped onto my skin from the mini saw tool. Just like that it was off and he put it into a small zip lock bag. I asked him to please repair it. He took my name and I left quickly. I sobbed in the car.

After a long drive home I stood in the door of my kitchen afraid to touch anything. I walked into the front room and felt overwhelmed again. My home was no longer a friendly place where I could just relax. I imagined peril everywhere. The thiuram mix list was so long it seemed to encompass everything. I was panicking. How does a person live with this?

To calm myself I started a list of questions for my next appointment. Surely the doctor could give me some direction on how to deal with this. My questions included:

  • Is Thiuram Mix allergy a latex allergy? Is it the same as a vinyl allergy?
  • How do I figure out how sensitive I am?
  • What does contact allergy mean? How much contact?
  • How do I know if the rubber gloves I am wearing have Thiuram Mix in them?
  • How do I find out the chemical make up of things?
  • What about my art materials?
  • If it is in the backing of carpeting how do I deal with that?
  • What about memory foam, my mattress, my furniture?
  • What about off gassing issues from rubber and paint?

Making the list calmed me and convinced me there was no need to panic because I didn’t have all the answers yet. It would only be a few days and I’d see the doctor again.

The days past dreadfully slow. I headed into my last appointment with the dermatologist with great expectations. The doctor quickly looked at my back for the last time. I was sure it warranted more time than she gave it. She took a seat and announced that she was adding Parabens to the list of things I’m allergic to. She explained some of the products where Paraben is found. Then, using technical terms I didn’t understand regarding the different ways skin reacts, she said my allergys were not IgE (**Immunoglobulin E) mediated and indicated that was a good thing. Anxiety started to rise, I was so lost. What I gleaned from what she said was that this is not like a peanut allergy where you can’t even be in the same room with it. She repeated that was a good thing.

She went on to say, “For you its going to be a matter of trial and error. I suggest you start with Thiuram mix.” I said something about it being a long list and she agreed. I asked about rubber gloves. She paused but did not respond. I asked if thiuram mix was the same as a latex allergy and she said, “That is a good question. I would have to look into that, but I would say latex is something to avoid.” My other questions were met with what was now a familiar pause as if lost for words. Then I asked how to find the information I need and she told me that in some places the information is protected. “It is proprietary information.” She suggested I call companies for the information. I thought, what do you mean proprietary? How can that information remain proprietary when people’s health is on the line.

The doctor went on to say that my situation is dose dependent. There may be some things I can tolerate more than others. It’ll be trial and error to figure out what, and how much I can tolerate. “Maybe its a threshold. Maybe if you have had this much rubber over a certain amount of time it is too much for the system,” she said. When I asked her what I should do next and  she focused the discussion on medications and which ones I had tried and dosages. For her it seemed the only answer was to throw more chemicals at it. “Until you figure out what exactly it is you are reacting to we can’t make it go away permanently. Avoidance is the key. As to figuring out what to avoid it is a lot of homework.”

After more conversation where I felt like we were circling she asked if I had been to the allergy department yet. I told her I was told I had to see her first. I asked if they would help me work with this and she said, “I don’t know that they would necessarily work with you on that. They would probably do other tests to see if there are other factors in your environment besides what we identified. There could be other things.” Other things, like I need other things. Then she started asking questions about things that were in my chart. Apparently the doctor had not read it in the three times I had been to her office. In that moment I lost what little faith I had left in her.

Sure I wouldn’t get a helpful answer, I asked anyway, “Is off-gassing an issue with the items on the list of things to avoid?” The doctor said that was also very individual, so I should consider avoiding off-gassing where I could. Frustration welled up because there were no solid answers. I felt myself sinking into a deep dark void.

As the doctor began focusing on skin care products I interrupted her because I was already using the products she talked about. At this point the more she talked the angrier I got. I changed the subject to my clothes and polyester. I told her that 85% of my closet was now on my bedroom floor. Things that I could not wear without experiencing a breakout. “Is that the way I figure out clothes? I wear them and have a reaction and they are out?” “I think that is your best bet,” she said. “We want you more comfortable in your Noskin, right?” Duh came to mind, but I held my tongue.

I asked if she knew of a site on line that could help me figure these things out. She said there was no place that she knew of, but that didn’t mean it didn’t exist. While she jumped on the internet I told her that I felt terminology was part of my problem. She agreed it could be. Then the doctor found ContactAllery.com, a contact allergy data base. She seemed very pleased to give me that. I knew it was not THE answer, but at least I had a starting point. Shouldn’t she have a sheet with informational resources for her patients?

The doctor said I might try switching to ointment on my rash because creams have more additives in them and perhaps I was allergic to one of the additives. I grew angrier thinking that I could be allergic to the things they gave me to put on my rash. I had spent a small fortune on the creams so far. Now I should just switch and spend more on something else that might not work? Tears were welling up in my eyes. Then she informed me the topical medications I was on were steroids. I had a vague recollection of hearing that once before, but what it meant was not clear. “Use them sparingly,” she said, “because they will thin your skin.” The new one she was prescribing came with even more precautions. What I heard scared me. My head spun and I felt so alone.

The doctor brought up oral medications again. She suggested I stay on antihistamines. I was on a strong prescription at night and Benadryl during the day. I wondered if that was the best course of action after considering the side affects of the other drugs. I barely registered what she said to me. The doctor was reviewing dosages again  and emphasized the cautions I should take with the antihistamines. I asked if there was a down side to taking antihistamines over the long haul. “Yes,” she said with a casual dismissive tone. I began to feel like I was bothering her. She went on to say, “Antihistamines are associated with an anticholinergic affect which can mean dry eyes, dry mouth, drowsiness, memory problems…”

The list went on but I didn’t hear any more of it. I realized how much of the medication I had slathered on my skin in desperation, more than what was recommended and too often. How much damage had I done with the medications to date? I wondered how much antihistamines had surged through my system in the past three plus months? I decided I needed to get off of all of it, no matter how much worse I felt. I had enough issues without creating more trying to fix what I had.

In a last ditch effort to gain some guidance on how to reclaim my life and my career as an artist I asked her how I could go about figuring out the countless number of chemicals in my studio. I couldn’t begin to fathom how to even begin sorting that out. She, like so many other people before her offered the same solution, “Just switch to watercolors.” That is a devastating thing to hear for a multi media artist. The doctor’s parting words to me were “This is going to be a part-time, if not a full-time, job for a while. You have a lot of homework to do.” I don’t want the damn job.

You know what they say about expectations – that they set you up for disappointment. Well, disappointment didn’t even begin to explain how I felt. I came to the doctor for answers and the potential for healing. I walked out feeling like I was left to my own devises to figure this out. I cried as I drove home feeling lost.

* Because I knew that for me, which is true for other patients, I often don’t hear everything a doctor says when I’m stressed. With the doctors permission,  I recorded my session with her. The quotes  in this post came directly from that recording.

** “A Immunoglobulin test checks the amount of certain antibodies called Immunoglobulin E in your body. Antibodies are proteins that your immune cells make to fight off bacteria, viruses, and other harmful invaders. The immunoglobulin test can show whether there’s a problem with your immune system. “If you have an allergy, your immune system overreacts to an allergen by producing antibodies called Immunoglobulin E (IgE). These antibodies travel to cells that release chemicals, causing an allergic reaction. This reaction usually causes symptoms in the nose, lungs, throat, or on the skin. Each type of IgE has specific “radar” for each type of allergen. That’s why some people are only allergic to cat dander (they only have the IgE antibodies specific to cat dander); while others have allergic reactions to multiple allergens because they have many more types of IgE antibodies.” (a) Your doctor can test for IgG to figure out whether you’ve been infected by certain kinds of bacteria or virus.” 

(a) Taken from American Acadamy of  Allergy, Asthema and Imunology  https://www.aaaai.org/conditions-and-treatments/conditions-dictionary/immunoglobulin-e-(ige)