Tuesday, April 19, 2011

O hai! Iz u my dokter?

OK, so. I hate being vulnerable, and feeling ugly or gross makes me feels very vulnerable. But I have this rash, these hives, this swelling, this peeling, burnt looking skin and it's not getting better. In fact, each phase has been uglier and more gross and more painful and humiliating than the last. So, I'll lay the whole thing out here for a few reasons.
  • I feel like if I talk about my most vulnerable moments that I will eventually realize I shouldn't feel bad about normal bumps in the road.
  • Maybe one of you has gone through this same thing or something similar and can share some advice.
  • I'm pissed off about the whole thing and maybe putting it out there will calm me down a bit.
Early in the year I had a rash on my chin and the right side of my face. It looked kind of like ringworm which is not a worm at all but a fungus. It is related to the fungus that causes women's yeast infections, thrush, athlete's foot and the yeast infections babies get with diaper rash sometimes. I used several things to treat it and it went away.
I used the following treatments:
  1. Twice a day I applied Skinbiotics Treatment Oil by Derma E which is tea tree oil and oregano oil, both anti-fungal and tea tree oil is also an anti-bacterial.
  2. Twice or three times a day I applied Nelson Bach USA Pure & Clear Acne Gel which contains tea tree oil and calming homeopathic ingredients.
  3. I continued my acne routine which is the kit by Nature's Gate called Natural Results Acne Treatment containing a cleanser, toner and lotion. I made to sure to remember to do the routine twice a day, every day, even though I'm usually a bit lax with it. The salicylic acid in the kit is anti-microbial and the ingredients are calming, soothing and moisturizing.
  4. In between the toner and moisturizer steps above, I wiped a cotton ball with colloidal silver all over my face and let it mostly dry .
  5. I drank 10 drops of NutriBiotic Grapefruit Seed Extract in water three times a day.
  6. I took 15 drops of BioAllers Allergy Relief Mold Yeast and Dust Allergy Treatment under the tongue every four hours.
  7. I drank a ton of water. Way more than my normal amount.
  8. And I tried to cut back on sugars as much as I was able.
The rash seemed to disappear and I continued the treatment for about two extra weeks just in case there was still something in my system. That brought me to the middle of February.

Then, the weekend before last, I got a small rash on my chest. The area covered was about as big as my hand and the bumps appeared to be hives. They varied in size between two or three times the size of goosebumps to slightly smaller than a pencil eraser. They itched. Not horribly, but as much as you expect hives to itch.

I happened to have a dermatology appointment due to my ongoing hormonal acne (for which I am now trying spironalactone again; I had used it years ago for polycystic ovary syndrome) and showed them the rash. I mentioned I had had an unknown rash on my face a few months before and that this rash itched. They--the resident and attending--diagnosed me with folliculitis even though it doesn't look like folliculitis I've ever seen and this was on an area where clothes don't rub and I--obviously--don't shave. I have been around no new environments, tried no new products of any kind, had no new foods and didn't think I was under any new stress or anything. So I thought, "Fine, I'll take the two doctors' word for it and use the 10% benzoyl peroxide body wash" which is the first line of defense for folliculitis, though you may be familiar with it solely as an acne product. They said use it at bedtime and wash with my normal stuff in the morning.
The first morning I woke up with a slightly red, slightly dry and tight (even though I had moisturized with the advised cream), somewhat larger patch of rash. "Hm, maybe it has to get worse before it gets better?"

The second morning everything was the same as the first, but the rash had spread on my chest, and further up my neck. "Weird."The third morning my skin was "severe sunburn red," dry as hell, flaking, burning and painful. The rash had spread up neck to my face. That night the entire rash and inflamed areas itched like hell. I'm talking crazy making itching. Over the course of this rash I had been taking benadryl to no avail and it still didn't help. Not even the benadryl spray or hydrocortisone gel. I had an event to go to that night so I slapped some makeup on and tried to be brave. It wasn't to bad. [This picture is from Monday but is indicative of Saturday as well.]
Sunday and Monday were pure hell and the call I put into my dermatologist's office Monday wasn't returned until 4:55. I didn't hear the phone ring. I saw the message from the resident who said he needed me to call him back, but he was done at 5:00. By the time I called it was too late. Meanwhile all day and night for those two days, I continued using Aveeno Skin Relief Moisturizing Lotion for cooling and itch relief, Aveeno Anti-Itch Concentrated Lotion for skin protection and itch relief and moisturizing with La Roche Posay Lipikar Body Balm (which, incidently, costs the same for a huge-ass bottle in France as the little tube costs in the US: RIP-OFF!). The glycerin in the lotions always burns a bit at first as my skin is highly sensitive, but, let me tell you, I've never experienced burning this bad. But I powered through those first few minutes because it seems every lotion has parabens, glycerin, fragrance and/or petroleum derived products and they all burn, but glycerin is the only one I don't get a reactive rash after using it.
All the while, since shortly after the rash started, I have been waking up with swollen upper and lower eyelids and lips. The doctors did not seem concerned at all about this. Not that it wasn't related to the rash, but that it is perfectly normal to start waking up with swollen eyelids and lips all of the sudden. The swelling is worse on some days by others and looks not all that bad--but still noticeable--by the time I photograph it.
This morning I called the dermatologist's office again and the girl I talked to yesterday (to leave a detailed message for the resident) told me that he said if the benzoyl peroxide was too drying then to use Cetaphil cleanser (which contains SLS, which I normally avoid like the plague as it also badly irritates my skin) instead and to keep moisturizing. "Great," I said to the woman, "And what do I do to get rid of the rash since I can't use the benzoyl peroxide and Cetaphil obviously will not clear up the rash, even if it is folliculitis, which I highly doubt it is at this particular point in time as I did when he diagnosed that." She paused and admitted he did not give any pertinent directions as regarded the rash. She asked me what drug he had given me for the itching. "Um, none? And it is about ten times worse than it was." She paused. Then she took thorough notes on the call and said either she or the resident would call me back today.
It's now 6:26. I think I'm not getting a call back. What do you think?
But just in case this plague is somehow related to the February plague, I've taken it upon myself to add steps four, five and six back in for now.
The phone literally rang as I typed that last sentence and it was the resident, who seemed to remember nothing about my case, insisted it was probably my "acne acting up on [my] chest neck and face." I said, "But it looks nothing like acne, it itches like hell and I've never had more than a half dozen to a dozen spots at one time in my entire life, much less a full face, neck and chest eruption resembling poison ivy at this point in appearance and itchiness even though I've been nowhere near the plant since last spring." Doctor: "Sigh." Me:"..." Doctor: "I guess I can fit you in tomorrow.Can you come around 3?" "No I have another very important appointment then, but it's in Hershey so can I come right afterward?" "Sure, I'll let the nurses know to put you in for about 3:45."
So. At least one more night of this hellish itching and Hellboy redness. Dude better give me something other than a damn wash or I'm kicking him in the balls and telling him that pain he feels is acne.


Lisa said...

i had this too! have pics as well.. my docs had no clue..first thought cellulitis..then i looked up erysipelas and told docs i thought it was that..they agreed and gave antibiotics..which helped..but it came back..4 times w/in 3 months, lasting over a week each time. went to ER..doc thought sle (discoid lupus) tested..negative..WTF!! so..have you had any luck w/diagnosis? did your neck muscles tighten/inflame as well? how bout tryin to figure this out together? cheers, Lisa


kaylynuke said...

The dermatologists basically said they had no idea, but gave me the corticosteroid cream clobetasol propionate. It worked, so I made sure to get all of my refills even though I didn't need it right then, so I could have it on hand. I have Mixed Connective Tissue Disease, so I do have tests and symptoms positive for SLE, which didn't seem to concern the derms either. Sigh.
Anyway, I've since come to believe (after reading some stuff and talking to my rheumatologist)that it was an allergic rash from UV rays. I related the few times I've had the rash to times when I hadn't used sunscreen on exposed skin. So now I use non-chemical sunscreen when I know I will be outside for even a few minutes or when I know I'll be in fluorescent light for any period of time. I also now use the cleanser, moisturizing lotion and jojoba oil from acne.org Those three items don't have ingredients for treating acne; they're just super for extra-sensitive or ultra-reactive skin (pH balanced, no dye, fragrance free, etc). I add a few drops of oil to the lotion if my skin needs extra moisture on any given day.

kaylynuke said...

Oh, sorry, forgot: The skin was tight because of the inflammation but I didn't have any problems with my muscles as far as I noticed.

Unknown said...

thanks so much for the info..as much as i hate corticosteroids..i will try it, because it just started again. nice way to start the new year huh? should i trust the ANA panel or is there another lupus test i should ask for? hope you had a fab new years eve and are not suffering too much today..cheers.

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