Friday, August 24, 2012

Day 106: Maybe House Would Be A Better Doc For Me...

I saw my doctor today. I haven't seen her since I started this. I know from experience as an "eczema" patient that as well-meaning as doctors are, they are useless for this. ("THIS" meaning any type of red dry itchy skin.) The answers are always always the same:
  • "You have eczema."
  • "You'll probably outgrow it." 
    • This eventually changed to: "You have chronic lifelong eczema and you will never outgrow it."
  • "Use these topical steroids."
  • "Take an oatmeal bath."
  • "Pat yourself dry after a bath, don't rub the towel."
  • "Don't wear perfume."
  • "Use a good lotion. Have you ever heard of Cetaphil or Aveeno?"
Again and again and again and again. They have been telling me this since I WAS FIVE. You mean to tell me there has been no advancement in "chronic lifelong eczema" in the past TWENTY years? We haven't figured out ANYTHING else to try yet?

So I figured, what's the point of even wasting a copay when she's going to tell me the same thing everyone else has told me? My mom and aunt wanted me to go see a doctor. My friend who's a nurse and all her nurse coworker wanted me to go see a doctor. And I thought about it but...again, what's the point? 

Then someone on the ITSAN forum posted about cyclosporine and how his doctor was really helpful. This gave me hope. Maybe I could try cyclo for a few months and give myself a break. I am so tired and very unhappy with the way I look and it makes everything so much harder. So maybe I could try this and maybe it could help and maybe I could pretty for just a few minutes. I got SO hopeful.

That was stupid.

I explained everything I had learned about this and I gave her the articles. I explained that EVERY DOCTOR has told me the SAME THING for twenty years. Twenty years is a LONG time to have no other treatment option. This is it? Use topical steroids forever even though they don't work and you have to use them daily just to look a little normal? That's the ONLY treatment option? srsly?

She was very sympathetic and I thought...maybe this will work and she'll be on board or maybe she's heard of this or maybe she knows someone who has worked with patients like me.

Then she said, "This article is very interesting, but I can tell you that what we're looking at is very severe eczema. You have nummular eczema on your arms and maybe ringworm on your stomach. I don't feel comfortable prescribing cyclosporine until we have a skin biopsy done so I want you to see a dermatologist."

I looked up ringworm and the only Google images I can find that look ANYTHING like me are from that Japanese doctor book that's online...and says, "This is ACTUALLY topical steroid withdrawal...and see how it went away months later!" And then I looked up nummular eczema...and again, the only pictures that look ANYTHING like me are actually topical steroid withdrawal. Nummular eczema is characterized by coin-shaped patches...I have FULL ARM SLEEVES.

I know it's "only" been three months, but I was hoping to be WAY better by now. I haven't seen much improvements. The only improvement I've seen is that my face is less rashy than the first month (although it's still red, especially my eyelids, but the skin isn't as dry or itchy there) and when I've had swelling in my face and eyes, it's gone away within a day or two. My neck was incredibly bad in the bad in the beginning but now it's a lot better. I've seen my skin cycle - Saturday night I started flaring, then Sunday-Tuesday night I had very red, hive-y, itchyitchy skin, then by Wednesday I'm ashy-red and flaking like a snow storm.

I've had this cycle happen weekly/bi-weekly. A really bad couple days, an ashy-red flake day, a couple of better days, then suddenly my arms start burning, I start getting hives up and down my arms, then everything is REDREDRED and itchier than I ever thought was possible.

I know I have to be patient. But I don't know if I can just wait a year without seeing any real improvement. It's killing my self-esteem, I sleep terribly,  and all I can talk and think about is being tired and itchy and ugly and tired of being tired and itchy and ugly.


  1. Hey hon, you will get moments of better-ness, it just takes time and is so slow. It will not be this bad for the whole time, you will have ups and downs that will gradually get less steep with each week. Hang in in there hon x

  2. Hi Brista, will you try the atarax and get some sleep, its helped me ? Months 3 and 4 are often the worst, dont loose heart, you'll be six months in before you know it x

  3. This is one slow process! I am nearly 300 days in and although things are a lot better for me, I am shocked how slowly we heal.

    Stay strong and don't give up. My big improvements started at 6 months.

    Thinking of you, my skin sister! x

  4. I just found a nice mix of Benadryl and ambien helped me sleep nicely the last 2 nights. I'm not sure if it's safe, you should probably ask you Dr., but it totally knocks you out for a good 8 hrs. Good luck.