I mention every now and then on my blog and on my Instagram that I have severe allergies and autoimmune issues. This past year I've gained so many new followers (I'm so grateful for all of you), and most of y'all don't know my story. So, here goes...
I've always had bad skin. I have had eczema since infancy and I can count on at least one full-body rash each year with no apparent cause that only goes away with oral steroids -all things considered, however , everything was fairly manageable. Early in February of 2016 everything changed. I noticed a rash on my torso that didn't look like rashes I'd previously had. The papules were scabbed over, some appeared bite-like, others looked like sores. On February 12th I texted a picture to my mom to get her opinion and then went to see my dermatologist the next week.
At the dermatologist I was seen by the PA who immediately diagnosed me with Scabies. In very basic terms scabies is like body lice, but worse. I told her that didn't seem right, we were clean people, we didn't own pets at the time, no 2nd hand furniture or sleazy hotels in our past ... but she was sure. She prescribed me an oral medication for treatment and sent me on my way. I went home and did research that night and found out that the entire family would have to be treated in order for the medication to be effective because of the contagious nature of the parasite. So, we got the (insanely expensive) medicine called in for Chad and both girls and treated the whole fam even though their skin was clear.... but my rash never went away. We treated again, and again. Then I went back to see the dermatologist because I was miserable and confused about why I wasn't getting better. This time the entire fam came along. We saw the doctor this time, not the PA. The doc took one look at me and again immediately "confirmed" the PA's diagnosis of scabies. This was despite the fact that the treatment hadn't worked, I didn't meet the criteria for being around the parasite, and no one else in my family was affected by what is an insanely contagious bug. The doctor even went as far as to lie to us and say there was no test for scabies which at that point we knew to be untrue because I was almost 4 months into this whole ordeal and had done my research. She said my strain must be resistant and then tripled the strength of the same medicine that the PA had prescribed. Oh by the way, did I mention that the medicine for scabies is a pesticide. So after taking the triple dose of poison and still not getting better, I decided to see another doctor. I went and saw my new doctor the next week and within 60 seconds of being in the room with me he told me I did NOT, nor did I ever have the dreaded scabies. Bleck
At this point before I explain what happened with my new doctor I would like to point something out. Due to my previous dermatologist's unwillingness to listen to us when we said we felt strongly that it wasn't scabies I unnecessarily, and repeatedly ingested poison (and covered my kids in it, too). I can't put into words the fury and pure unadulterated rage I felt toward her for causing me to suffer needlessly for months. We had spent hundreds of dollars on harmful medicine, hired professionals to come examine my house for bugs we didn't have, and washed our bed sheets every single night for almost 2 months. The moral here is not to ignore your gut feelings. No one knows your body like you, and sometimes even the best doctors can get it wrong. So, never be afraid to speak up.
My new doctor was a godsend, but he wasn't able to cure me right away. He was very upfront that it would take some time, research, and trial/error to get a diagnosis. On the first visit he did two biopsies to test for bites and gluten intolerance which at first glance is what he thought my rash resembled. In the meantime he suggested I go gluten free while we waited for results. Both were negative, but I felt like the gluten free diet was helping so I kept it up. This decision went wrong very quickly and I flared up horribly. Back at the new doc again he had a different idea and suggested a severe nickel allergy based on the shape of some of the sores on my back, but he needed to do testing to confirm. I was at one of my worst points during this visit. The rash was everywhere, there were awful sores developing all over my body, including my scalp. Emotionally I was super low- but my doctor made sure to tell me that the silver lining to my symptoms being so severe at this point was that he had more to go on, as far as leading him toward a diagnosis. We scheduled testing began to pray harder than ever...
I scheduled my first round of testing with my awesome new doctor in August (six months after first seeing the rash) . On Monday August 29th I woke up and my hair was wet, the sores on my scalp were oozing and my head was really sore. I was nervous about them being infected. Around lunch time the lymph nodes behind my ears were so swollen that they looked like tumors and were visible from across the room. Both the sores and the nodes got progressively worse as the day went on. I called my doctor and they asked me to come in immediately. When I did he saw how flared up I was and decided he needed to start the patch testing right away and not wait until the following week when we had . He said if I stayed flared up like this much longer I was going to eventually become super sick. He was particularly concerned about several quarter-sized sores on my arms, and back, and the large sores all over my scalp. Since I was flared up so badly there was limited space for the patches- he couldn't place them anywhere that had any bumps or rash on it, so they were only able to test for 60 different things as opposed to the 110 they had planned on.
The test he gave me is called a patch test, and tests for delayed reaction contact dermatitis. So, for example, if I was allergic to wool (which I am) and wore a wool sweater, or brushed up on one in a store while shopping then a few days later I might flare up- however at that point if I didn't know I was allergic to wool, I would have no way of figuring out what had caused the rash. The way the test works is several patches were placed on my back- each patch with 10 different allergens on it. The patches are outlined with markers and notations are made on my back and the patches are covered in lots of tape and stay on for 3 days...during that time I can't bathe, or sweat, or risk getting my back wet in any way. After the 3 days the patches are removed and initial results are looked for, but that isn't the end. Once the patches are removed I have to continue to stay dry and go back every other day for readings until the doctor decides he has all the information he needs. Since he is looking for delayed reactions typically that takes a full 7 days. It's miserable and uncomfortable and just plain sucks. The first round of testing was for 36 different allergens. After that week of testing he was able to confirm that I was severely allergic to Nickel, and moderately allergic to Lanolin, Cocamidoproyl Betaine (the chemical that makes soap foam), and all fragrances. My current situation was this: my nickel allergy was so severe that it caused me to develop Systemic Nickel Allergy Syndrome. Essentially it caused my body to go into shock, and my system to be so whacked out that all of my other minor allergies were compounding with the nickel allergy and wreaking havoc on my body.
My instructions based on these results were to stop using everything that had the 4 allergens in it. This got complicated because it meant all soaps, detergents, shampoos, etc were off-limits. The lanolin allergy also severely limited the options for cosmetics, toiletries, and lip balms. Luckily I was given access to a database in which my doctor input all of my allergies and it provided me with a list of all products currently on the market that were safe for me to use. The Systemic Nickel Allergy syndrome was so bad that it meant not just staying away from nickel jewelry and metal things, but also beginning a low-nickel diet. Oy vey, this diet is awful. Nickel is a naturally occuring element in soil and believe it or not has a very strong presence in a lot of food. The major culprits are chocolate, nuts, seeds, oats, whole grain, whole wheat, soy, and leafy greens...this means all of those had to be cut from my diet. It also was a huge clue as to why I flared up so badly when I was eating gluten free, because I was consuming a lot of chocolate, peanut butter, oats, etc. At this point I was to make these lifestyle changes and hope to begin healing.
Weeks and months passed and I got rid of everything in the house that could potentially cause an allergic reaction. I started the low-nickel diet and said goodbye to peanut butter, my favorite food! I prayed and stayed positive, after all we finally had a diagnosis! Unfortunately I wasn't healing, and I actually was having some new flare-ups. On November 28th I went back in for a 2nd round of testing, this time they tested for another 70 things. My 2nd round of testing revealed 4 new things that I'm allergic to. One that I am severely allergic to is PPD a chemical in hair dyes, textiles, temporary tattoos, and printer ink. I am so allergic to it that I can have a reaction just by being near someone with dark hair dye and the information I was given regarding the allergy even suggested avoiding dark colored clothing.They also found that I am also allergic to a Benzophenone-4 (a chemical in sunscreen),vitamin E, and a propylene glycol (a food preservative). After my first round of testing I received a print out from the database of all of the products on the market that were safe for me to use. This included medicines, make up, household products, toiletries, etc. The first list was 100 pages long and now it's down to only 48 pages. Several of the products I had been using that were previously "safe" like my deodorant, toothpaste, and conditioner were no longer on the list. It's nuts how every decision I make from here out will be affected by these allergies. I received several (20+) injections in my scalp for the sores that have been there so long, they said I was losing my hair in those spots. I also got injections in my back and arm.They wouldn't even put bandaids over where I was bleeding because they were worried I'd react to the bandaids. The nurse called me Bubble Girl and I almost punched her in her face. I knew she was only trying to lighten the mood, but I was not in that place. Chad was with me so that he could process all of the information and know how to help with the lifestyle changes from there out. The injections would take a few days to start working on the really bad spots, and then I was to start a really strong steroid regimen that would last 3 weeks... I was to eliminate everything from the house that contains the new allergens and study up on each of them to be aware of situations when I might come in contact with them. I put together a binder that I took with me everywhere from the first year, it listed all of my allergies and also the different names they can go by under ingredient lists- that can get very complicated. It also listed all of the low-nickel foods for grocery shopping. I will still be on the low nickel diet probably for the rest of my life.
I was trying to stay as positive as possible. The idea of a future in which I was no longer itchy, and able to wear something other than long pants and skirts was unbelievable to me at the time. It had been such a rough journey, I felt willing to lose some things I loved (like reeses and coloring my hair) in order to feel better. I ordered new soaps, detergents, toiletries, make up, etc. Despite finally having a diagnosis I still battled constant anxiety and depression that had been amplified by my health issues. Around Easter of 2017 I found myself severely depressed, even having suicidal thoughts and feelings. Thankfully I was able to voice that to Chad who got me to a doctor immediately. We were so discouraged and worried. I had been dealing with depression since high school, but never in all those years had it gotten to that point. The doctor I saw changed some of my meds and suggested I begin setting a therapist regularly. Due to the longevity of my health issues and the fact that they weren't going anywhere he felt that seeing someone regularly was what would be best for my mental health. During the next visit with my dermatologist I begged him to find a way to help relieve some of my symptoms. I explained that my depression had been really bad because of all that I had been through and without saying that I had been suicidal, I strongly implied it. His face did something weird-where it looked half full of pity and the other half curious. He asked me a few questions about when I had the dark episode and then told me one of the best things I had ever heard in my life. My suicidal episode coincided directly with the dates I finished my steroid regimine. The dosage of prednisone that I was taking was as high as you could take without having to receive in intravenously at the doctor. Evidently is very common for patients coming off of such high doses of steroids to experience severe mental health side effects. While we knew my battle with depression and anxiety wasn't over we were thrilled to know that brain was not going to those dark places on its own.
Around this time my doc started me on immunosuppresant drugs because my body needed a break from the reactions in order to recover from the long-term trauma. The immunosuppresants didn't stop my allergies, it only stopped my reactions. The risk with these type of meds is that they can severely compromise your immune system. So we had to be careful and do blood work pretty frequently. Slowly but surely I began to heal. I was stuck in a weird place of being so glad that I wasn't flaring up, and concerned knowing that as soon as I stopped the immunotherapy the rashes and sores would be right back. Would I be on these meds for the rest of my life? My doctor did a lot of constant research on my condition so that he could always be learning more. This included video chats with the world's leading expert on nickel allergies. He said he planned on writing about my case for a medical journal. As part of our discovery into what exactly my condition entailed I agreed to a third patch test. This time they were only testing the things we knew I was allergic to, and I was on the immuno therapy during the test. Remember, while on the drugs my body is not supposed to experience allergic reactions, so this let us determine exactly how severe each of these allergies were. Even on an extremely high dosage of the medicine I still reacted to ALL of the patches, which is truly crazy.
Six months passed and things were going well, wounds were healing and our family was adjusting to the changes in our lifestyle that we required. At a follow up appointment my doctor, who felt more like a guardian angel, informed me that he was moving out of state. I actually cried. He helped me choose a new doctor within the practice and gave me his personal contact info since he would no longer be my doctor I would be able to call him personally with questions and updates, or if I had concerns about anything.
Three months after my doctor left the new doc called me in to tell me that my blood work showed dangerously low white blood cell counts and I had to stop the immunosuppressive drugs immediately. She was very clear that if I were to get sick at this point I was likely to end up in the hospital with my body unable to fight off an infection on its own. She had a new drug that she wanted me to start, a biologic, that she was optimistic would help me manage my flare ups now that I would begin experiencing them again. I was so anxious, my biggest fear was my body reverting back to that constant state of traumatic reaction. I called my old doc and told him what was happening. He said he had heard good things but had never prescribed it to anyone before. I decided to try it out, because there didn't seem to be many other options out there.
I have been taking Dupixent ever since. Dupixent is a twice monthly biologic injection that I do from home. Originally I gave it to myself, but it is the most painful serum I've ever experienced, and I got to the point where I couldn't force myself to inject through the pain. Now, Chad gives me my shot twice a month. The needle is so tiny, I don't feel it at all, but the medicine itself is so painful going into my body that I scream oudloud in pain and cry each time I have to receive the shot. Chad and I both dread it. Ultimately, though, I would rather have the medicine than be where I was before. The way the medicine works for me is by regulating and reducing my reactions. What would have previously been several weeks covered in rashes and bumps is now usually less than 24 hours.
Where I am now, a few years later is a slightly more comfortable place in an always delicate situation. I have learned which of my allergies are worse than others. I can bleach my hair without issue, but coloring it causes a temporary flare. I still have to use special order shampoo, conditioner, and cleansing products. I still have to eat a low nickel diet. Now, however, I am able to cheat a bit. Usually I save cheat days for when I'm super stressed or the days right around when I receive my medicine so that it tempers any potential flares. Some things I react to very strongly. For example, I can't eat at chikfila at all because of the peanut oil. I absent mindedly ate a CFA fry once a year or so back and my lips immediately swelled with hives. However, some things I don't react as strongly to - I'll eat reeses when I'm feeling emotional and might not have a reaction at all. I will eat things that contain chocolate, but not pure chocolate by itself. All Asian cuisine scares me and I stay far away because of the inclusion of soy and peanut oils and sauces. Honestly a lot of it is trial and error along with moderation. My body has never fully recovered. I get sick much more frequently than most people, and suffer from chronic fatigue. My life is full and blessed, though, and with the support of my truly amazing husband I get by.
If you've made it this far, thanks for sticking with me. This experience and health issues are a huge part of who I am now. There was no way they weren't going to be. Looking back at these photos I was much more emotional than I thought I would be. I can still vividly remember the feeling of utter hopelessness thinking that no one was ever going to be able to cure me. I'm so glad that the Lord provided the right doctors for me, and ever grateful for a Savior that suffered so that He could succor me when I can't endure on my own.
Hey y'all! I'm Layne, a 30-something Southern Belle trying to navigate this craziness we call life. I'm a wife, mom of 2, and all around hot mess. I'm passionate about mental health, and love everything having to do with fashion. I'm living a super blessed life, and I love sharing it with you.