It's largely been a shitty summer. I'm not going to say that everything went wrong that could have, but at times it really did feel that way. Between bad news, house problems, pet ailments and a few health bumps, we have absolutely earned a problem-free rest of the year. Perhaps some bits about all of this will come out in my later blogs, but for now I am just going to talk about my mysterious allergy adventure.
It started in early June the day I drove up north for the Transplant Games in Cleveland. That morning, I had gone to Duke for labs and another neupogen shot to boost my white blood cells, which had been low for months. Between then and when I arrived in Cleveland, 10 or so hours later, my face had flared up into a red, itchy, bumpy mess! And I'd itched my forearms so much that they were bruised. Thankfully, I was staying with my step-mom, a retired dermatology nurse, so she knew just what to do to calm things down. We went back to basics with cleanser, hydrocortisone and some benadryl. It took several days, but things did improve.
|Things went from bad...|
|...to worse over the course of this ordeal.|
The next problem arose when I tried to find a sunscreen to wear while I was out at the Games. Many of you know that transplant patients have a 50% increased risk of developing skin cancer than the normal population. So daily sun screen is part of my everyday routine, and when I know I'm going to be outside I'm even more careful. Luckily I did have some sun-protective clothing with me but, honestly, most of it is such a drag to wear! Plus, I always like extra protection on my face anyway. We literally tried every brand of non-comedogenic sunscreen available in the grocery store and every single one of them irritated my face. This was the start of my summer without sun.
|over-the-counter non-comedogenic sunscreens|
Moving past some unimportant details, the rash was basically gone by the time I got in to see my regular dermatologist. But it was such a mystery. Had the rash been from the neupogen shot since it first appeared the same day I had my most recent injection? I racked my brain to figure out any new products I may have used and to which I may have had a reaction. I could think of nothing. And an allergic response to neupogen - especially after having had it several times - was apparently not very common. We were puzzled.
Then it came back - we didn't know why - and I went back in and my doctor took a biopsy. And I waited. By this time it was past the date of my needing another neupogen shot but the doctor wanted me to hold off until the biopsy results came back, so I was just hanging out with low white blood cells, not being able to use sunscreen...it was great. Finally, the biopsy came back! It showed an inflamed follicle; it was a little ambiguous what the cause could be, but since I'd seemed to have had an allergic reaction that brought on the rash in the first place, we decided to do an allergy patch test.
During the month I waited to get in for my first of these appointments, I had dreams of finding a magical sunscreen after my allergy testing. I was told that the skin test doctor was a "miracle worker" at finding products people could use. And that after my testing I would have a "safe list" of products that I could use. In the meantime, still no sunscreen, still covering up in the sun (hot!), and sometimes just avoiding it altogether, staying home watching Netflix instead.
|a pic of filling up the patch slots|
- Day 1: I arrive at my appointment with every single product that I use on my face and skin. It fills a big canvas shopping bag. Based on chatting with me, the doctor orders the Duke 80 (the 80 most common chemicals to which people are allergic), the fragrance (45), the sunscreen (21), the cosmetics (39) and the essential oil (11) panels plus three extras. Then we look at ingredient lists of all of my personal products. I probably had close to 60 and she narrowed it down to 26 for testing. It occurred to me how strange it was that even though I use mostly natural and organic products (I realize, those terms can be relative) there are still a ton of chemicals in those things! (808 Side note: It really made me appreciate the "purity" of the soap we make, using things like glycerin or goats milk base, real honey, oatmeal, coconut oil, apricot seeds or cocoa beans.)
All of my products.
Next they prepare the trays. All of the chemicals must be put out fresh so this cannot be done ahead of time. While one person works on setting up the usual chemical panels, another inventories all of my personal products and takes a tiny amount of them and puts into the circles on the adhesive strips. It is very meticulous work and gives me time to fill the nurse in on all of the pet drama we've had. I joked that I should have run across the street for an iced coffee because this ended up taking at least 30 minutes.
Finally the fun begins! They take each strip, about six inches long and two inches wide, and stick them methodically to my back, starting up top and working their way down. They make purple marks around all of the strips so they will be able to tell where the dots are when the strips are removed. The doctor's assistant runs out of room placing the strips on my back with about 6-7 strips to go, so we also end up using the top of my thighs. I wish I would have thought about how this would affect walking! But we couldn't really use my stomach because of all of my surgery scars and various marks and bruises from my insulin pump and continuous glucose monitor.
Not enough real estate on my back. A strange picture of my back bound up.
- Day 2: Two days later I go back for them to remove the tape. The excitement is palpable. Few things have ever felt better in my life. However, even after removal, my back and legs were still sticky, and I still cannot take a shower, so I spend the next few days with clothes half sticking to me and, again, trying not to sweat, wearing clothes that will not be ruined by the purple ink markings on my back and taking sink baths. I had a few random itches when the tape was on, but so far there is nothing turning red or starting to turn red where the samples had been.
- Day 3: After a very dirty and stinky weekend during which I probably moved and sweated more than they would have liked, I go back on Monday for my final reading. But I'm not expecting much. I have watched my legs and had several people look at my back and nothing, nothing is even close to red or suspicious looking. The doctor diligently feels every single row of spots. She's looking for any skin that's raised or, obviously, red. She finds nothing. Well, one kinda, sorta, maybe, but it's a product I haven't used in a very long time so that's really not helpful.
So what does all of this mean?
It could mean several things, none of which mean that an iota of good came out of this process. First, my immune-suppressant medication could have affected the test. Sometimes that happens with transplant people. Secondly, the test could have shown a false negative. This sometimes happens with anyone. I also think this could mean that either substances got rubbed or sweated off, although they said they suspected that. Third, the initial breakout could have been from something other than an allergy, but the fact that a seemingly allergic reaction corresponded with it sent us on the wrong trail. Forth, the test could have been accurate and the massive breakout was just a one-time, freakish thing for an unknown reason.
I highly doubt that last thing, and I've actually tested it since: I went back to one of my old SPF moisturizers (the doctor said I could run these self-tests to try to see which things were really ok or not. It involves putting the substance on your skin - not necessarily your face, but I thought what the heck, I'd stop at the first sign of irritation - twice daily for a week or two to see if redness/reaction occurs) and began using it for a few days. At least two times that I put it on my face, my arms would violently begin itching right away. Strange, but repeatable, so that one is off the "safe" list. I will set it aside to see if I can start seeing a trend with any of the other products I do.
The really good news that I discovered during all of this is that I tolerate most of the Bare Minerals products very well. I have used their make-up in the past when my face would act up, and their face wash for years - it's the most gentle, least drying face wash that I've found. Unfortunately, they have now stopped making that kind of face wash, but I have found one from their new line that works almost as well, and, anyway, I don't react to it. I have also purchased a plain facial moisturizer from them which is so nice after only being able to use a thick, oily, ingredient-less moisturizer called Vanicream these last few months. And - big bonus - I also found that their SPF 50 mineral shield will not make my skin break out!! Of course this stuff is pricey, but it is worth it to finally have a sunscreen I can safely use.
Bottom line is that I have no idea what brought on this allergy even after all the sweat and stink and experimentation. I hate mysteries like this! So I'm cautiously going forward, trying things one by one, being disciplined even though I miss my old lavender and other natural and organic hand and body creams so much. In the end, I know that I will likely be donating a lot of my products to friends, sadly, and that I will have a much smaller treasury of face and body products to use. I enjoy that stuff so much. I really do hope that most of this ends up to be a fluke and that with removing a few of my suspicious products, things will stabilize again.