San Nguyen's Eczema story
Read these other fellow eczema sufferers stories
My name is San, I am 21 years old, and I've had eczema pretty much my whole life. My eczema was pretty mild in that there were only dry areas behind my knees and behind my elbows. I remember a few points in my life where the red, itchy, shedding spots would migrate to different parts of my body. When I was 14, I had this extremely large red and drying... thing... on my stomach. Going to the family doctor and his prescribed ointments did nothing, so my parents thought I should be brought to a Chinese Herbal Medicine specialist. Results of improvement were fast, things really looked up. However, once I stopped the medicine, things just came right back. Now, from April of 2007 till now (March 2008) I've had an exacerbation of eczema physical symptoms. An itchy and the most uncomfortable feeling overwhelmed and overtook my whole body. I experienced extreme physical and psychological consequences. To add on to my dismay, eczema is never fully cured; I only found this out recently. Hopefully this story, and many others, would reach out to fight for a cure.
As I said, I've had eczema my whole life but as of April 2007, it turned to a severe case. It is still not known of the origin, but it's suspected that these symptoms surfaced when I took rifampicin for tuberculosis infection (compare this with TB disease) or it could possibly be when I was injected with a HepB vaccination. It is still unknown. The results are clear though, I have extreme sensitivity to the sun, and areas of raw, red, drying, flakey, cracked, you-name-it- skin are almost everywhere.
To go in chronological order... I was about finishing up my 3rd year of post-secondary and I notice my cheeks and forehead drying, and flaking up. I made several appointments with multiple doctors, each of them suggesting different things, each prescribing different things. Things never recovered, things only became worse and I was on the edge of embarrassment to show myself to public. At this point, I was still volunteering and working. Ten or twenty doctor appointments later, each with unsuccessful outcomes, I finally demanded a recommendation of a dermatologist. Unfortunately, the dermatologist appointment was not available until two months later... what to do during those two months? Well, live life in the most horrifying, and most uncomforting way. Ever.
I thought Vaseline would be the best solution for managing my sensitive but extreme drying of skin. I bought plenty of jars of it and exposed my whole body to this jelly-substance. Going to sleep with it on is one of THE most uncomfortable feelings you can experience. Sleeping was pretty much impossible anyway. I would go to bed at midnight and watch the sunrise through my window. I would not get any sleep. I even took measures to wrap myself in plastic, and tie my hands to the bed to prevent scratching myself to death. Of course, Vaseline didn't help much; it just made things more gooey and uncomfortable. I looked awful, worse than awful. I would cry almost every night. I went through severe depression.
There were cycles of pimple-like bumps around my collar bone, stomach, and underarms. Just think: eczema with an addition of pimply bumps. I don't know where they came from, but it was ugly and itchy. I completely stopped going to work, avoided going volunteering, avoided any sort of contact with other people. I even hid myself in my room; I couldn't bear to show myself to anyone, not even my family. I did nothing. I was a complete sloth. I lay in bed most of the time wearing grubby clothes, having a fragmented sleeping pattern, rejected all offers of social events... it was not a happy time for me.
This is what I tried out: Vaseline, oatmeal + honey baths, Vitamin E oils, Aveeno, Head and Shoulders (as suggested by a doctor), diluted baking soda, Chinese herbal medicine, various ointments, various lotions, hydrocortisone.
Because Chinese Herbal Medicine worked in my last case when I was 14, my parents had the suggestion for me to do it again. It was awful. It is by far the most awful tasting thing you'll ever consume, guaranteed. It showed no improving results. When that didn't work, my parents then bought a combination of lotions and tablets off of the internet. They offered that this internet medicine showed promising results. The main solution of this internet medicine is turmeric, a plant that is said to be good for the skin. I looked up this solution and their website and became very skeptical. In fact, I'm very skeptical of a lot of things, post-secondary education teaches you to be this way, especially being in the Science program. Anyway, I told them about my disbelief in this medicine and they responded very angrily. That did not go well with my already depressed state. I really am lucky to have financially supportive parents (all the things I tried out came out to be really expensive) and I truly appreciate it, however, I didn't give the 'okay' to this medicine. Another funny story about my parents. When it started to rain really, really hard one day, my dad made the suggestion that I go outside and get completely drenched from the rain. He mentioned that "back home" when there's harsh rains like this, it cures a lot of skin conditions. Yeah... I did not end up following this suggestion because from previous experience, wetness from the rain is not just one of the most uncomfortable feelings, it is THE most uncomfortable feeling ever. Even stepping out of the shower is something I do not look forward to at all.
Finally, my dermatologist appointment came through and it was a mighty quick session. He prescribed immunosuppressants and advised I stick with Vaseline. Things worked immediately, I was relieved. I had to get my blood checked every once in a while though, because the medicine is considerably dangerous. My next appointment, he suggested I get out of the medicine. Unfortunately, the once-improving results just went back to square one. I then continued with the (super expensive) Cellcept and switched to Cetaphil as a moisturizer. Cetaphil has been the best moisturizer working for me out of all the things I've tried (Impruv, Eucerin, Complex15, Vaseline creamy, Spectro gel, etc.). He later had to prescribe antibiotics because I was bleeding everywhere. My scratching would produce lines of blood everywhere. I would wake up with blood stains on my clothes and linens. The unattended wounds would crust over with bacterial infection. It was not a pleasant sight, nor was it a pleasant feeling. Walking - any sort of movement, actually - was painful. Waking up is a chore.
Summer was just about ending. I looked better, but flaky dryness cycled in and out. I had a biopsy done to test whether it was lupus (it's never lupus... House M.D.. reference). The dermatologist then suggested I take UV therapy. It's been helping, I think.
This eczema period was so psychologically stressful. I debated whether to finish my last year of post-secondary. I'd get so embarrassed leaving piles of flaky skin on chairs and tables. People would always ask me if I was sunburnt or would ask me if it was contagious! People would always stare and I would be very self-conscious. I'd avoid harsh lights, avoid mirrors. What is worse is when people start to complain about single cuts/scratches, or some silly invisible blemish on their face. It also aggravates me to no end when people simply do not understand what you are going through. I have best friends that have been really supportive though, thank you very much :)
Things have cleared up considerably, and my life is more manageable now. I smother myself with Cetaphil multiple times a day, attend UV light therapy twice a week, take Vitamin C supplements, use sunblock everyday, and treat things with Protopic (though it is not showing any improvement). However, it is not gone. I am less depressed, but I still get irritable, itchy, and uncomfortable. Waking up is still a pain since you encounter every morning with dry, uncomfortable skin; and you feel as if you made your bed (and linens) really filthy. My parents are still forcing "alternative medicine" my way for me to try out. The last thing they got me to try was some green, jelly-like plant. I'll hopefully run to get an allergy test soon to avoid possible irritants. Eczema has profound influence physically and mentally. The term "uncomfortable" is probably the best description of my experience with eczema, and this feeling is my main motivator for writing this story.
