Sunday, January 3, 2010

Autoimmune Urticaria Dermatographism - Part II

Before I made my appointment with the allergist, I spent many months tending to my new summer garden.  The mosquitoes were out with a fury and the days were hot and humid.  I would try to rise early to work out in the garden to beat the heat, but after taking Benedryl at night, I found it quite difficult to get up at sunrise.  One of the  things that I don't like about living here where it is hot and humid is the mosquitoes because I am allergic to them and they feast on me.  We had mosquitoes in California but they were rarely a problem; here they come out in flocks and attack in flocks.  If I was not itching from hives, I was itching from mosquito bites. But to better describe my hives, imagine wearing a bathing suit at dusk and just letting all the mosquitoes "go to town" on you. That is how the hives felt - the itching was that torturous.

I tried for several months to figure out what was causing the hives.  First I thought it was the shampoo, then I thought it was hair products in general (because it first started on my scalp). When it moved to my body, I thought it was probably stress, then tomatoes, or a salicylate allergy, which is an allergy to a lot of fruits and vegetables, shampoos, soaps and other herbs and medications.

In combination with the hives, I started showing symptoms of being perimenopausal. There were only a couple of symptoms though,  one of which was hot flashes - or "power surges" as I like to call them. However, I wasn't sure if they were part of the hives or the hives was part of the changes. The "power surge" felt more like my blood was literally boiling or the core of my body was on fire. I was NOT sweating - I just felt like I was running a different type of body fever.  I was at a loss and could not figure out what the problem was.   

Once I made the appointment I stopped taking antihistamines as they requested and I must tell you those were the most miserable four days and nights that I have experienced in a long time. The first night, I woke up hot and itchy. I went to the bathroom, turned on the light to see how bad I had broken out in hives and found that rather than being circles they were now stripes and lines - especially on my legs. And as I looked at the pattern I was able to figure out that every single crease and wrinkle that was on the blanket or my pajamas was "mapped" on my skin.  It was THE most bizarre thing I had ever seen. It almost looked as if I had been whipped or flogged. All the folds, creases, and wrinkles were now "drawn" on my skin and itching. I was also furiously itchy on my scalp. Because it was summer and I felt hot, I would go to the leather couch and read until I could fall asleep.  The coolness of the leather couch felt good against my skin.  Sometimes, I would be able to fall asleep and other times, I positively could not, so my days began at two or three in the morning. :o(

I would naturally go to bed exhausted but I'd spend each night reading God's word and that is how I would fall asleep. I would read about the many healings performed by our Lord, Jesus Christ. I'd go to Revelation and read aloud every passage where the angels praised and worshiped the Lord. That is how I fell asleep and I have to say that God's word is a great comfort when I am walking through deep valleys. On the third night though, I woke up extremely tired - almost delusional from fatigue. My scalp was on fire and itching.  I went to the bathroom and saw that I was broken out in hives again, but I didn't know what was going on with my scalp - I literally felt like I was being eaten alive. 
I opened the bathroom closet and stared at my husband's  electric hair clipper and thought to myself,  "I should just give myself a #2 and just see what is bothering my scalp."
"But your hair - you'd be bald." I answered  back.
"Hair always grows back." I rationed.
"This is a little drastic, don't you think? And what would Mark say about your hair! He loves your hair." 
"I must shave it - there is nothing else to do!"  And this is the conversation that I had with myself for twenty minutes while staring at the hair clipper. I was finally able to talk myself into a shower and washing my hair with "Pine Tar" soap. It seemed to help for a few hours.  After I finished, I went out to the living room and laid down against the cool leather. It was such welcome relief to feel the cool against my skin. By the fourth day, I was miserable and non-functional from fatigue and I was hot, and itchy. My darling daughter and son had to take over the keep of the house and tending to Conor. I laid  on the bed with an enormous ice-pack on my pillow to keep my head cool  and a light blanket. 

My husband works as a firefighter and his shifts are 24 hour on and 24 hours off. He also has a second job that takes him away during the day.  He was as helpful as he could be. When he was home, he would read aloud from the bible or out of the book " How to Live and Not Die," which was a great comfort to me.

The day of my appointment finally arrived and I have never been so excited about seeing a doctor than I was that day; Mark came with me so that he could explain to him what he saw on my scalp (I had him check as well). Dr. B,  first asked me a lot questions about the foods that we eat on a regular basis.  Then he asked me what was happening and how these hives were showing up. Then he walked up to me and said "Okay, I'm going to do something that might feel a little uncomfortable, but bear with me." He took his pen and started scratching on my back while he asked me more questions. It was painful as he did this and I would twist and turn in discomfort.  When he was finished he said, "Aaha. Okay, now turn around." He had written a whole sentence on my back and showed it to my husband. My husband's eyes got big.  "Wow." he said, "that's weird."
"This is Urticaria Dermatographism - this is the type of hives that she has." He told my husband. "This is why you see all the lines and wrinkles of her clothes and blankets, socks - anything that touches her skin. Now, let's go into another room to do some other tests."

We went to another room where they perform all the prick tests on the back and just before he started those, he drew some blood. "I am going to take this blood and and spin it and inject it into you to see if you have the type of allergy I suspect you have."  He explained.  He sent it off with the nurse and did the prick tests and said he would be back later. We sat  and waited for any reaction and Mark would look at my back and say "I don't see anything really." That was not a comfort to me because I wanted them to find something to explain the hives. After the appropriate time went by, Dr. B looked at my back and said "Well, you're not allergic to any foods." Let me see if this other test is ready.  The nurse brought back the vial and he injected it back into my arm. "Okay. Let's see what this test says."  I'll be back in a little while. I kept looking at the test and could not really see anything, but he put in a place that wasn't so easy to examine - I think it was towards the back of my arm. I could not twist my head and eyeballs that way, so I just had to wait.  Dr. B. came back and looked at my husband and said "See this? See how it's red and swollen?  This is an autoimmune problem."  When he said this  my face kind of went white because I wondered about Lupus.  He then told us that what I had was "Autoimmune Urticaria Dematographism. "Basically, he began to explain "you are allergic to yourself - that is the Autoimmune.  The Urticaria is the word for 'hives' and the Dermatographism is the writing and how it shows up. I am running some tests for Lupus, but I can tell you that you DO NOT have Lupus, so get that out of your head. Running the tests is just precautionary and standard.  They will also test for some other things."

Dr. B. was very thorough and a very good listener. He said that the best thing for me was to take a large does of Allegra every evening at the same time. He told us that many people have the same problem and sometimes the problem doesn't manifest itself until later in life.  We were told that at this point there is nothing that can be done other than taking the antihistamine.  He said that he would know more when he got the test results back but that I should just rest easy that it is not any other complicated disease.
He gave me a prescription and a follow-up appointment in six weeks. I was relieved in some sense over the diagnosis but these other "lab tests" left me curious.

We went out to the receptionist and made the follow-up appointment but it would not be with him because he was not available; it would have to be with the nurse practioner. As much as I wanted to continue with the doctor, I accepted the appointment and Mark and I left the office.

We picked up the prescription on the way home and I took it that evening, since night time was my problem period of the "day." I had a peaceful evening and a pretty restful sleep, but the only thing that did not go away was the itching in my scalp. It was  not as bad but it was still present.

This will be all I will say on this post but I do have more to share, so there will be a part III.  I did not go through the medical definition and explanation of this problem in detail
because I am more interested in sharing my journey and the things that I learned and continue to learn as I live with the problem. I figure that if you are here because you have this problem too, you don't need a medical definition; you already know what it is. Again, I just want to share my journey, but ultimately, gentle reader, I am believeing God for my healing. "But He was wounded for our transgressions, He was bruised for our guilt and iniquities; the chastisement [needful to obtain] peace and well-being for us was upon Him, and with the stripes [that wounded] Him we are healed and made whole." Isaiah 53:5
" He personally bore our sins in His [own] body on the tree [g][as on an altar and offered Himself on it], that we might die (cease to exist) to sin and live to righteousness. By His wounds you have been healed." 1 Peter 2:24

I'll see you again soon. 

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