Ugh, last night was rough. Morning shows why, a fresh crop of rash and blisters. My palms are now rashy and my inner thighs. I put a call into my derm"s office since my dose of Prednisone was decreased today and that seems like a bad idea since it wasn't even controlling it at 80mg. I am getting a bit concerned, hopefully they will call me soon.
I went off Wheat, corn, dairy, eggs, soy, peanuts, shellfish, and cantelope yesterday. All foods I show skin allergy results to just in case that's inflaming something.
Showing posts with label Bullous Pemphigoid. Show all posts
Showing posts with label Bullous Pemphigoid. Show all posts
Monday, March 17, 2008
Saturday, March 15, 2008
Friday, March 14, 2008
Int'l Pemphigus/Pemphigoid Conference 2008
I found out today that the International Pemphigus/Pemphigoid Foundation is holding their annual Dr/Patient conference in Dallas Apr 4-6th. This has a rate of about 1:200,000, so only about 30,000 people on the planet have this at any one time. So this is a golden opportunity for me to educate myself about it. I fly in on the 4th, and the conference is solid until 12:30 Sunday. I fly home on the 7th which is my 37th b-day. This will be the first trip I've taken by myself without my husband or kids since before I was married 17 yrs ago!
I think I'll write a book!
Last night I spend most of the night awake feeling itchy. My sleep meds didn't help at all, and I realized this morning I've been taking my Prednisone at the wrong time of day. I reread all the prescription med info and saw somewhere in the middle, not on the bottle that I'm supposed to take it before 9 am. I've been taking it at night so hopefully taking it at the right time will help me sleep better.
I called my derm again this morning, to let her know the rash is still getting worse, and that I was worried about stepping down the dose. So she sent me in for bloodwork today to see what my starting levels are with an eye to changing my meds once we have the confirmation of the results. I'll be on the 4 a day until Monday and then call her.
I also decided I needed to set up a Health Notebook for myself to keep my medical records and prescription information and Contact information in one place so I can share my comprehensive current health information with all my health professionals. So I put my prescriptions papers in a binder, and wrote down the vital health info- meds I'm taking, disorders I'm being treated for, OTC meds and vitamins I'm using, and contact info in there with all my health care providers and family members. I will take it with me whenever I leave the house just in case something happens to me. That way if I end up having to go to the hospital, or to a new Dr for something it's all with me. I'm going to add all my health records when I get copies. I got copies from my dermatologist today when I picked up my lab work papers.
I figured out a creative way to secure my sterile gauze over the broken blisers. Instead of using the extremely expensive roll of itchy gauze to wrap my arms, I went out and bought some knee high panty hose and cut the toes off. They are $5 a box of 20, and I'll throw them out after each use, vs $8 a box of 5 gauze rolls. The sterile gauze pads with polysporin on my wounds keeps them protected from germs, but this holds them on without tape that irritates my skin and causes problems with places to stick. And it stays on! I just gently pulled them over the gauze patches and put the cuff part near my wrists. I don't even feel them! Heaven after the itchy nightmare of the last few days. Nothing like having very sensitive skin and wearing what feels like a "hair shirt"
My grandma would smile since she was an inventor and used to think outside the box like this all the time.
Today I got to thinking that the best way of dealing for this in a constructive way is to do what I love to do best. Become an expert on the subject. I am thinking of writing a book- about Automimmune disorders and the connection to autism. Every mom of a spectrum child I know that I can think of has some form of autoimmune disorder. Women who do have an autoimmune disorder are 9 times more likely to have a child on the autism spectrum. There must be a genetic thing going on there. It also tells me that autism is most likely autoimmune in origin, or at least making these babies more vulnerable to environmental insult. This idea also sprang up because in looking for info on my disorder there aren't any books out there!! It's so rare it's only in medical journals and short descriptions on websites. If I researched and wrote a book, I could include a large section on BP and other Pemphigus/pemphigoid disorders so that people newly diagnosed could read about others experiences and find out what others are doing.
I called my derm again this morning, to let her know the rash is still getting worse, and that I was worried about stepping down the dose. So she sent me in for bloodwork today to see what my starting levels are with an eye to changing my meds once we have the confirmation of the results. I'll be on the 4 a day until Monday and then call her.
I also decided I needed to set up a Health Notebook for myself to keep my medical records and prescription information and Contact information in one place so I can share my comprehensive current health information with all my health professionals. So I put my prescriptions papers in a binder, and wrote down the vital health info- meds I'm taking, disorders I'm being treated for, OTC meds and vitamins I'm using, and contact info in there with all my health care providers and family members. I will take it with me whenever I leave the house just in case something happens to me. That way if I end up having to go to the hospital, or to a new Dr for something it's all with me. I'm going to add all my health records when I get copies. I got copies from my dermatologist today when I picked up my lab work papers.
I figured out a creative way to secure my sterile gauze over the broken blisers. Instead of using the extremely expensive roll of itchy gauze to wrap my arms, I went out and bought some knee high panty hose and cut the toes off. They are $5 a box of 20, and I'll throw them out after each use, vs $8 a box of 5 gauze rolls. The sterile gauze pads with polysporin on my wounds keeps them protected from germs, but this holds them on without tape that irritates my skin and causes problems with places to stick. And it stays on! I just gently pulled them over the gauze patches and put the cuff part near my wrists. I don't even feel them! Heaven after the itchy nightmare of the last few days. Nothing like having very sensitive skin and wearing what feels like a "hair shirt"
My grandma would smile since she was an inventor and used to think outside the box like this all the time.
Today I got to thinking that the best way of dealing for this in a constructive way is to do what I love to do best. Become an expert on the subject. I am thinking of writing a book- about Automimmune disorders and the connection to autism. Every mom of a spectrum child I know that I can think of has some form of autoimmune disorder. Women who do have an autoimmune disorder are 9 times more likely to have a child on the autism spectrum. There must be a genetic thing going on there. It also tells me that autism is most likely autoimmune in origin, or at least making these babies more vulnerable to environmental insult. This idea also sprang up because in looking for info on my disorder there aren't any books out there!! It's so rare it's only in medical journals and short descriptions on websites. If I researched and wrote a book, I could include a large section on BP and other Pemphigus/pemphigoid disorders so that people newly diagnosed could read about others experiences and find out what others are doing.
Thursday, March 13, 2008
My latest challenge
It has been awile since my lsst post. I have spent this term battling a mystery itchy rash that progressively got worse and went from tiny itchy spots to finally last weekend huge fluid filled blisters all over my forearms.
Here is what my arms look like
I have been to my regular Dr, the dermatoligist 3 times and finally monday we have a tentitive diagnosis of Bullous Pemphigoid. We have done 3 biopsies and one is going to OHSU to determine exactly which type of pemphigoid I have. Either Bullous Pemphigoid or Cicatricial Pemphigoid. I really hope it's only Bullous because Cicatricial Pemphigoid can lead to blindness.
Detailed information about this rare autoimmune disease is rather hard to find, but I did come accross the International Pemphigus and Pemphigoid Foundation online and joined.
International Pemphigus and Pemphigoid Foundation
I am hopeful that the treatment my Dr has me on will work. Right now I am on 80 mg Prednisone, 2 Tetrycycline, 4 eye drops, Zyrtec, Benedryl, B vitamins, and a sleep med that reduces itching so I can sleep.
I am still enrolled in classes and have a final exam next friday. I am getting a B right now in the class, so I need an A on the final. Obviously though my health takes 1st priority.
In addition to my dermatologist and opthamologist I will be seeing an acupuncturist next week and my allergist. I am going to stop eating all the foods I tested allergic to on my skin scratch test just in case. Previously my allergist said they act differently in the digestive system but I think it couldn't hurt to try. When I can get off the meds I'll have them run a full blood workup on my food allergies.
I also decided we are ripping up the carpet in my bedroom and the hallway and putting Pergo in there to cut down on the airborn allergins to give my body a little extra help. That was already something I needed to do to help me control my Asthma. I also ordered a hospital grade air purifier for that room. Eventually I'll get one for the kids bedrooms as well.
Hopefully between it all we can get this controlled quickly so I can get life back to normal.
I am very thankful I can still drive and handle my own self care.
I have kept up pretty good spirits through this. My husband and kids are all doing a great job of helping me and doing what needs to be done. It's been good for them to learn to pitch in. I am very proud of them!
Here is what my arms look like
I have been to my regular Dr, the dermatoligist 3 times and finally monday we have a tentitive diagnosis of Bullous Pemphigoid. We have done 3 biopsies and one is going to OHSU to determine exactly which type of pemphigoid I have. Either Bullous Pemphigoid or Cicatricial Pemphigoid. I really hope it's only Bullous because Cicatricial Pemphigoid can lead to blindness.
Detailed information about this rare autoimmune disease is rather hard to find, but I did come accross the International Pemphigus and Pemphigoid Foundation online and joined.
International Pemphigus and Pemphigoid Foundation
I am hopeful that the treatment my Dr has me on will work. Right now I am on 80 mg Prednisone, 2 Tetrycycline, 4 eye drops, Zyrtec, Benedryl, B vitamins, and a sleep med that reduces itching so I can sleep.
I am still enrolled in classes and have a final exam next friday. I am getting a B right now in the class, so I need an A on the final. Obviously though my health takes 1st priority.
In addition to my dermatologist and opthamologist I will be seeing an acupuncturist next week and my allergist. I am going to stop eating all the foods I tested allergic to on my skin scratch test just in case. Previously my allergist said they act differently in the digestive system but I think it couldn't hurt to try. When I can get off the meds I'll have them run a full blood workup on my food allergies.
I also decided we are ripping up the carpet in my bedroom and the hallway and putting Pergo in there to cut down on the airborn allergins to give my body a little extra help. That was already something I needed to do to help me control my Asthma. I also ordered a hospital grade air purifier for that room. Eventually I'll get one for the kids bedrooms as well.
Hopefully between it all we can get this controlled quickly so I can get life back to normal.
I am very thankful I can still drive and handle my own self care.
I have kept up pretty good spirits through this. My husband and kids are all doing a great job of helping me and doing what needs to be done. It's been good for them to learn to pitch in. I am very proud of them!
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