I don’t believe you stumbled across this page by accident. I am not much of a person who believes in coincidence. I’m going to take a wild guess and say we have something in common. Something in your life changed without due notice. Initially, it isn’t concerning, but then things take an unexpected turn. The pages of the calendar flip, and look at the years go by! “Time heals all,” they say, but I am wondering how much time is needed.
“Is anyone sitting here?” I say to another patient while at the dermatologist, trying to figure out where this debilitating itch came from. I smile across the room in hopes that no one sees me continuing to scratch my back, abdomen, chest, legs, arms, head, and well… you get the picture. “Okay, Petty Officer Taylor, where is the rash?” I am assuming this would give him an idea of what is causing the issue, but unfortunately, I don’t have anything for him to look at. I happen to be the luckiest person alive, having unbearable itching with no signs of anything but misery. For most people, they are probably thinking, “Oh, it’s just an itch. That isn’t that bad.” But I can tell you that being a Veteran and suffering from chronic pain since 2011, it has nothing on an itch. I used to obsess over finding out what was causing my pain. If I could turn back the hands of time, I would appreciate pain a little more.
After walking down an imaginary stage and receiving my degree as a Google Medical Diagnosis Research Consultant (Is that a real thing?), I went down a rabbit hole, searching high and low for any and everything I could find. I scoured every online source I could think of to find the answers I was so desperately “itching” for. You can imagine my frustration reading what I would consider the bare minimum from so many professionals. Slap some type of moisturizer on for your dry skin. You may possibly have eczema or urticaria. I rolled my eyes after each sentence. I need to know what I can do now. Not what to do when I am in the middle of the desert crawling on my stomach dying of thirst but remember I have moisturizer in my bag. I am sure after moisturizing for the next 6 days with no food or water, I will probably still survive considering I had my fragrance-free moisturizer handy. Who possibly gave you people a platform? I wish there was a thumbs-down button for most articles and blogs because I could have answered that for myself. However, I still continued to read, and read, and read further. I even paid a subscription for the dermatologist network so I could ask dermatologists all over the U.S. what may be happening. I spoke to one and literally asked for a different professional after we talked for ten seconds. Once the second person started talking about taking Benadryl and using moisturizers, I demanded my money back and got a refund. Do you think that people who are suffering haven’t already tried the at-home possibilities? I know you have to ask, but to have no clue after the fact probably means you guys are here just to collect a little income, it seems. What can you tell me outside of what the average human being knows? There is no way I am paying money for you to tell me to go to the local Target and grab some calamine lotion. I am way past that, buddy.
Let’s get into the experience I know you are dying to get to. Initially, I started off with some itching when going to bed. It wasn’t a death sentence, so I thought, so I just started seeing my allergist. I wasn’t thinking too much of it. Let’s get a bed cover and pillows to tackle these dust mites. Then it became an all-day thing. Okay, let me moisturize more, and this will probably go away. Then I noticed I was having to put it on more frequently, then I started getting irritation. My skin felt like it was tearing or burning sometimes. That’s when I brought it to their attention again. Slowly, I started noticing I could not wear certain clothing anymore. The same clothing I had been wearing for years. I would just be scratching in public all day. Some time later, I no longer could bear seams touching my skin. It would just amplify it. I am scratching everywhere I go. I have to have a fan on me just to get through the day. I noticed I also started sweating more than usual.
Fast forward a year later, and I had the worst experience known to man. It was May 2023, and my skin was itching, stinging. I couldn’t sleep, I stopped eating, I couldn’t go out, and it was full-body. My scalp, back, and abdomen drove me nuts. But we can’t leave out the upper thighs and buttocks. I had no relief. Even laying on soft plush material would drive me crazy, and these were the only blankets I could sleep on in my life. I began becoming miserable. This lasted for months. I began to sleep more because that is the only way I would truly get relief. I would be in a dream living life the way it was before. I would only wake up and realize I was still living this harsh reality. There was no way I would be able to work a job. I would be driving to get groceries and just realizing how I could not even complete normal tasks. My brain would just be focused on this itching and sometimes burning. Luckily, I am not one that has nails or I would probably be scratching my skin off. This cannot be life. I have so many things I want to do. It just so happened that I had a trip to Cancun at the end of the month in May 2023. I wanted to cancel, but my trip insurance only covered if a doctor said I could not go. That wasn’t going to happen. I made the best of it. Luckily, while engaging in water activities, I was fine. I found myself slapping lidocaine on my entire body. Later, my doctor told me how dangerous that was. It could have been a death sentence, as if I wasn’t already feeling like I was heading in that direction. I would not have gotten through the trip otherwise.Then, the flight… I was so thankful there would be no one sitting next to me on the way back because I chose the emergency exit seats and paid more for seating closer to the front. They gave other passengers the option to pay more, and oops… there was this couple next to me. I tried so hard not to scratch and wondered if they noticed I was scratching my skin raw on the flight. I tried forcing myself to sleep for the last 45 minutes. I could not wait to go home and cry. This is not how I expected my solo trip to Cancun would have gone. Will I not be able to live normally anymore? What about dating? There is no way I will be able to work a regular job in this condition.I have a degree in the tech field and love hands-on work, but now I have to find remote opportunities. I’m absolutely devastated at this point, which is what led me to the list of things I’ve tried…….
I started by taking more vitamins and collagen. I then ventured into detox teas, bid farewell to anything fragranced, and switched to non-fragranced products. I changed my detergent to All Free and Clear, ditched all plug-ins for naturally scented freshness, and eliminated dairy, gluten, added sugars, and high fructose corn syrup from my diet. I even began fasting to detox my system, juicing, and using antihistamines—I’ve even escalated to taking 5 Zyrtec a day (with medical approval).I religiously moisturized and sealed my skin with natural oil, applied aloe vera, washed my sheets weekly, and vacuumed every day. I tested for mold using a kit from Amazon, swapped my apartment filter, and bought a humidifier (only to discard it for air purifiers). I even placed a filter over my shower, switched to soap made of natural ingredients, and used calamine lotion, hydrocortisone, and other prescribed topical creams.I’ve tried Gabapentin and Prednisone, used Benadryl intermittently, started Dupixent injections, consulted a functional medicine doctor, experimented with herbs, visited an immunologist, saw two dermatologists, received allergy injections, had my doctor check my labs, underwent a stool test, and explored food sensitivities. I scoured Reddit for success stories and tried just about everything under the sun.
After yet another visit to the dermatologist, whom I had high hopes for uncovering the issue, I found myself feeling anxious. By the fifth visit and being handed yet another cream, I decided enough was enough. If you don’t advocate for your health, who will? Let’s be honest, I may have become a bit rude, but who wouldn’t after a year of showing up to appointments only to be sent away with products I could easily purchase from Amazon. In short, after exhausting various treatments, I took matters into my own hands and contacted the board for a referral. As it turns out, the VA will cover treatment outside their facilities if the department is unavailable, if the wait for an appointment is excessively long, or if you escalate the issue to the board. I got labs done and was still taking 5 Zyrtec a day.
I also reached out to an immunologist and explored functional medicine along the way. At one point, I was so fearful that a food sensitivity might be to blame that I ended up shedding 30 pounds in just a month and a half due to the extreme restrictions in my diet. Surprisingly, something positive came out of it—I had been struggling to lose weight for so long but couldn’t resist my cravings. It’s incredible what lengths we’ll go to when we’re convinced certain factors are causing us misery.
Despite my efforts, the suffering persisted. After escalating the issue to the director, I began treatment with Dupixent. Several months have passed, and while I’m not on my deathbed, I’m still enduring discomfort. I’m now awaiting phototherapy, but the challenge lies in not having a definitive diagnosis. How can we be sure we’re treating the right problem? I tried juicing, eliminated gluten and alcohol for about 8 months, and cut out dairy as well. However, I still find myself scratching and experiencing irritation. Even though I switched to silk pajamas, which seem to be the only thing my skin can tolerate, on days when I experience a flare-up, it doesn’t really matter what I wear. I scratch now as naturally as I breathe—it has become a part of my daily routine. Whether I’m brushing my teeth, washing my face, or eating, scratching is always there. I’m at the state where working outside the home is not an option, and traveling is out of the question due to the distress it causes. I often wonder how long I can stay away from home without experiencing an extreme flare-up. It’s challenging enough that I spend most of my day scratching.
Your mental well-being truly begins to deteriorate when you start to accept the idea that you might have to endure this condition indefinitely. I lost track of how many times I dialed the crisis line, lying across my soft plush blanket, engaging in conversations with the representatives, desperately hoping they would provide some insight into why I should continue living in such a state. Each representative seemed to follow the same script, almost as if they had a notepad with key points they had to recite.
Then, something unexpected happened. As I conversed with one representative and mentioned that I didn’t want to keep her on the line for too long, she reassured me by saying she was right there with me. She then asked, “Have you ever watched ‘The Secret’?” Surprisingly, I hadn’t. The more we talked, the more uplifted I felt. I later discovered a video on YouTube with that title and learned that there was also a movie by the same name. And so, my journey began.
Previously, I had been listening to affirmations as I slept, but as months passed and I continued to suffer, my faith in them waned. Watching this seemingly old documentary called ‘The Secret’ on YouTube, which delved into the concept of manifestation, sparked something within me.
This was something I had been struggling with for a while. I had been writing and affirming that I would be healed, but deep down, I lacked belief in those words. The documentary discussed manifesting wealth, good mental health, and various aspects of life that could be influenced through manifestation, but it hadn’t touched on health yet. I had always believed that health was something beyond the power of thought to change. However, towards the end of the documentary, they introduced the idea that you can indeed manifest health, that you can will your body into healing. But what do you do while you’re in the process of manifesting health? The answer was surprisingly simple—nothing. You simply have to believe that the Universe or a higher power will provide the answers you seek. The key was not to dwell excessively on fixing the problem, as this could inadvertently exacerbate it. This revelation brought me a sense of relief, as I had been feeling utterly drained. It didn’t mean I should avoid seeking medical help altogether, but rather not to become consumed by the quest for answers.
Now, when a troubling thought crosses my mind, I acknowledge it and then carry on with my day. I no longer spend hours in bed, feeling depressed and endlessly scouring the internet for a cure. One thing that has truly helped me is a shift in perspective. I began to ask myself, “If I’m feeling itchy, uncomfortable, and irritated, why not make the most out of my day?” This simple change in mindset has made a significant difference in how I approach each day.
When facing such a challenging issue, you essentially have two choices: you can either allow yourself to be miserable while enduring the physical discomfort, or you can strive to extract as much good as possible from the situation. After all, you are bound to feel the physical discomfort, so why let it affect you mentally as well?
For those who are struggling with a similar issue, the key is not to let it overpower you. Discover activities and methods that help you navigate through each day. Shift your focus to activities that your body permits while you await answers. If this experience hadn’t occurred in my life, I wouldn’t have ventured into blogging. I wouldn’t have realized that there are others out there grappling with similar challenges. I firmly believe that everything happens for a reason. While I may not have been certain of that reason at the time—and would have preferred not to endure the ordeal—we find ourselves in this moment. We must concentrate on continuing to live our lives to the best of our abilities, emphasizing the things that bring us joy while envisioning the restoration of our lives. Not to the way things used to be, but to a new and improved version.
