Sunday, December 27, 2009

Autoimmune Urticaria Dermatographism - Part I

This fall I was diagnosed with Autoimmune Urticaria Dermotographism also known as hives. I know that it sounds like a minor problem and in the larger scheme of things it is when you compare it to cancer, leukemia, ALS and other fatal diseases.  My reason for blogging about this though is not to gain pity but to share my experience in the hopes that it may help anyone that has been diagnosed with the same.

I have had hives off and on since I was a young girl. The worst outbreak was when I was in sixth grade - I think I had it for a few weeks. They went away as mysteriously as they showed up. And it that is how things went all through out my life. But the periods of being hive free were years upon years until now. We would always blame the body soap, detergent and anything that came into contact with my skin, so I switched soaps and laundry detergent many times throughout my life.

The hives really became a problem this spring beginning in April. I broke out a couple of times and thought that it was perhaps stress related. I would take some Benedryl and they would go away.  Then one day I began itching along the nape of my neck; particularly at the end of my scalp. It itched like the fury, so in desperationI applied some hydrocortisone cream. This went on for a few days and it was positively maddening! I googled and googled "my problem"  and thought it was my shampoo- in specific, the sodium lauryl sulfate.I found a concoction that I could make using essential oils of rosemary oil, neem oil, lavendar and distilled water. I spent a pretty penny on these oils but it helped and gave me a lot  of relief. I would have my children section off my hair and spray my scalp, massaging it in each time. They mercifully sat outside on the deck attending to my needs with much love and compassion. Of course I changed my shampoo to the Shaklee brand, which I sell and that helped tremendously but then it started to spread.

After a while, the itch was no longer at the nape but it started to grow behind the ears and at the crown - where lice like to make their home and it became more maddening; I was convinced I had lice. I would drag my poor daughter outside and had her look through my hair so many times that at one point she refused to do it anymore - respectfully.

Again, I would be fine during the day but at night was when they would manifest themselves on different areas of my body - never the same place except my scalp- that was always consisitent. At times they would appear like hives and so I would have no doubt that they were hives but other times they looked like bites. I was miserable. I'd wake up at two and three in the morning miserable with blotches all over my body. This went on for weeks. At times I would wake up and drop myself on the leather couch in the living room waiting for the Benedryl to kick in ...and finally falling asleep only to have to wake up in an hour or two
to begin my day of homeschooling and tending to my home. Needless to say, I was sleep deprived and I was very forgetful and wasn't always at my best. I tried every morning to put my best foot forward because I needed to homeschool my precious children, but it was taking a toll as time went by.

I was thoroughly convinced that I had lice and/or scabies. How I had contracted either was beyond me, but there could be no other explanation. My dear sister had even posed the question to me. However, I always believed that scabies was contracted from "unholy" activity, so I didn't know how in Heaven's name I could have contracted that problem.  My darling daughter, God bless her, was the only voice of reason saying, "Mom, if you had lice or scabies, we would ALL have lice and scabies - especially Dad." I had to admit she was right so after months and months of suffering I called our allergist and made an appointment to see him post haste.
The only request that they made " No antihistamines for four days!"  I remember just holding the phone to my ear and saying nothing. "Hello, Ma'am, are you still there?" 
 "Yes." I replied quietly.
"Shall we put you down for "such and such" a date?"

"Yes," I said again, "I'm just not sure that I can go that long without antihistamines - it's just that bad."
"Well, we cannot possibly help you if you take any antihistamines," the receptionist told me.

"I understand. I'll do my best." and we hung up. I wanted to cry because of what I knew I would have to endure.

5 friends said...:

  1. Monica,
    Thanks so much for posting about your hives. I have just completed four days of hell on earth without antihistimines! I have a doctor's appointment at 10:30 this morning for skin testing for allergies. I suspect I am battling the same autoimmune issues you are battling. What do people who do not know the Lord do when they have hives? I slept 1 1/2 hours last night! I have made it through God wonderful grace, because my flesh was begging for relief---anyway it could get it!
    I don't like taking any kind of medications, but I am resigning myself of the possibility of using antihistimines until the Lord decides it's time for my complete and total healing.
    I really think reading your blog yesterday helped encouraged me not to give up and to endure, especially through last night---the hives turned into SuperHives! All I could do was pace back and forth in my living room and pray from 3:00 on.
    I am convinced that the Lord allowed this torment to give me compassion for drug addicts and alcoholics going through withdrawl!

    As soon as I get over this hump, I plan to start a blog. I'll send you an invitation. I just retired last week from 30 years of teaching. I am also a writer and an intercessor in my church. The Lord has so much waiting for me and these hives are trying to slow me down, but I am remaining strong through His mercy and grace.
    Bless you, bless your beautiful family, bless your sewing, bless your writing, bless your ministry, and bless your health.

  2. My Dearst "Miss Rose" (you didn't leave your name)

    I am so glad that you stopped by. Oh, how my heart goes out to you. I know that there are many people out there who have it. Since I began posting about this problem, I have had a tremendous amounts of hits on my blog because of it - they have just not left a message. :o( You are the first..and I'm so terribly glad you did.

    Please write to me again. I have some things to share with you that have been helpful to me. I will be praying for you and for your doctor. I totally understand how you feel.

    Be open to the antihistamines...there is nothing wrong with them. People take them on a daily basis because of pollen etc. If that doesn't help, but it should. Oh, God bless you. Just remember if you are not satisfied with the findings, look for another doctor. We have great allergists here in Virginia.

    I will wait to hear back from you. As you can see, I have already "friended" you on your blog. I'll keep checking back to see if you've posted. Get some rest, my dearest sister in Christ.

    God is with us in our journey, just hold on tight to his hand.

    With His love,

  3. Dear Monica,
    Thank you for such a quick response. I went to the allergist at 10:30 a.m. and had 64 pricks on my back. The only thing I'm sensitive to is three unusual trees and grass that don't even grow in North Carolina.
    I am not allergic to milk, shrimp, wheat, or other foods. My lab work came back okay, too. So as soon as I left the office, I made a B-line for Walgreens and got my perscriptions filled--a cocktail on Zyrtex, Allegra, Singulair, and Ranitidine. I also picked up some Benydryl. As much as I hate to take pills, I'm resolved to give them all a try.
    I haven't entered anything on my blog yet except my name and e-mail address. I tried to yesterday, but the hives got the best of me.
    I think I may change it over to Shabbyblogs; it looks easier to set up. I'm on Facebook. Are you?
    My name is Sharon. I wrote Red Rose of Sharon because someone once told me the Lord saw me as a Red Rose of Sharon. It sounded like a compliment, so it stuck with me.
    Thank you for your words of encouragement. They spoke life to me! It is so wonderful to hear from someone who has gotten victory over hives.
    The benedryl is kicking in. I'm looking forward to going to my dark bedroom, putting on some quiet worship music and resting in the Lord. I thank Him for helping me through the last four days and nights. I thank Him for the relief I am getting from the antihistimines. I thank Him for His great love, mercy, compassion, and faithfulness.

    I thank Him for my new friend, Monica.

    Abounding in Hope,
    Sharon (But I really like Miss Rose, too!)

  4. Hi Miss Sharon,
    I had a feeling that your name was Sharon...but wasn't sure.:o)

    That was a sweet compliment indeed. I had a gentleman that I worked with in my younger days that God's grace abounds in me. I kind of cocked my head to the side and said "Oh! Thanks, I'll take that as a compliment...I think." LOL.

    I am on facebook. You can find me under Monica Fermoyle. I didn't find your email on your blog.

    It sounds like you had a good visit at the doctor's. I was thinking of you and praying for that. I'm glad that you are sleeping right now.

    God Bless,

  5. Hi Monica,
    I went back to the allergist today. He said my thyroid hormones were slightly elevated. Diagnosis:Autoimmune Urticaria. The good news is that the antihistimines are helping; the bad news is I'm sleeping 9-10 at night and napping 2 hours. He has changed me from zyrtec to allegra, but I'm waiting for my insurance to approve the allegra. What meds or treatments did you find most helpful? He wants to put me on a drug that they put transplant patients on, but I have to sign a waiver. That is not something I want to risk doing.
    I thank you for your prayers!
    Come see my blogg sometime...I've been working on it a little.


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