Painting Max's Room

This weekend the big project has been painting Max's room. He is moving into the office. At 13 I think he needs his own space. He took everything out of the office himself this week, and we had 2 of his friends over to paint today. We did the ceiling and two walls, and will do 3 coats, then move the furniture to the other wall and do the other two walls. He has planned and executed the whole project with a little help from us. I will be doing the rest of the painting....needless to say with RED paint it needs an adult finess to get the paint even but they did a decent job on the first coat and learned a lot. It's a bold color but it's fun and he likes it. I can deal with that :) And it's just paint. If he ends up not liking it we can repaint.

Test results are not in on the CAT scan, but my mammogram came back normal!

Mammogram

The mammogram was easy. I didn't have to redo any of the scans. She says I should have the results in about 2 wks or less.

I had a new outbreak of blisters this morning. They seem to come in waves. A few good days, then a few hours of blistering. However the accupuncture apt was wonderful. I fell asleep.

CAT scan

This morning I go in for my CAT scan. I will update when it's over! The prep stuff you have to drink isn't too awful thankfully!

Update- All went smoothly. I will get the results on Friday hopefully.

Tomorrow is my mammogram. I will be glad to have all these tests over with.

Grades are in

Women in Psychology A
Intro to Psychology A (required for the psych major if I go that route)
Anatomy and Physiology B+

It will have to be enough! I couldn't have worked any harder to bring that grade up after the two C+ on the midterms. I am giving it over to mother nature to send me the way I am supposed to go.

I had another accupuncture session today. Relaxing but I itched a lot during it. Probably releasing a bunch of stuff. I feel sleepy today so I'm going to take a nap now and enjoy the beautiful spring sunshine when I get up to take the boys to the park. All the daffodills are in bloom!

Happy Easter

Just a few of the eggs we colored. Cassie made them quite artistic this year!

Spring Break!

I took my Anatomy and Physiology Final at 7:30 am today. I think I did pretty well on it! Whatever the outcome I know I did my best and that is all I can ask of myself. Physically I'm feeling pretty good today. Still not very itchy which is a good sign. I went to my regular Dr on the advice of my dermatologist to do a cancer screening. The meds I'm on are ones that depress the immune system cells that fight cancer, so obviously it's necessary to rule that out just in case. About 20% of BP patients have some underlying cancer. This isn't alarming when you look at the age most people are with this disorder 60-80 yrs of age. So I am not letting it scare me, just taking the sensible precaution of having myself checked out. My Dr is having me get a mammogram which I needed anyhow at 36 as a baseline for the future, and a CT scan of my abdomen and pelvis. I will do tha CT scan next Wednesday. I have to schedule my mammogram on my own and will call that in on Monday. I was going to do that today...but I took a nice unexpected nap instead :) I never do that but I guess I needed it! It was very nice!

Pretty good day

A few more blisters on my right leg, and a few new ones on my forearms, but the itching was still noticeably less. I go back to the dermatologist tomorrow to get the sutures from my biopsy out. She called me today to let me know that she will be starting me on Imuran tomorrow. We'll adjust the dose as needed.

Poor Nick sprained his ankle going down the stairs at school today. He's having a rough week!

I got a lot of studying done today, and I feel pretty good about the Immune System chapter! My final is Fri at 7:30 am. I will be very glad to have it finished!

Sweet Relief!

I am SO glad I decided to try accupuncture! For the first time in a month I had the experience of being completely relaxed without itching. The relief lasted until nightfall and it's still much better than it has been. I was very impressed, and I'll be going back on Friday for a second treatment, and 3 times next week. The accupuncturist is also a Dr of Chinese Medicine and she gave me an herbal treatment to take as well as some Essential Fatty Acids. Hopefully those will also be beneficial.

And I was able to take my bandages off tonight as the bigger blisters are all healed to the point they are no longer needing to be covered. I feel very grateful tonight!

I also got my teeth cleaned today, and went to my allergist. He gave me a clean bill of health lung wise, and said to just keep doing what I have planned and he'll see me in Dec.

Nick got to the Dr for eye drops, and spent the afternoon with Grandpa at the park while I had my accupuncture. He had a great time :)

What next!

Right before bed....Jake tells me Nick looks sick...so I go look, and he's got pink eye in both eyes! Poor kid! I guess tomorrow will be a DR filled day since I have 3 apts of my own to go to.

More rash, more blisters

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.

I just remembered something important!

When I was a child I would break out in a rash every time my skin touched grass! I had contact dermatitis to grass itself, not just the pollen. It would itch horribly and have red welts. So I must have had this tendency from childhood. Everyone thought it was the strangest thing and often didn't believe it was from the grass. Well....seems like more than a coincidence to me! I'm going to mention it to the dermatologist and my allergist. And then I'm going hire someone to get rid of the GRASS!!!

Pretty Uncomfortable today

I slept o.k. last night, but my arms are all prickly feeling. Hopefully healing under the exisiting blisters. I do have some new very itchy rash on my torso and neck and legs, and a few new small blisters. I am going to take it very easy today. I think I did too much yesterday, shopping at 3 stores and doing laundry and then out to see a performance of Beauty and the Beast at the high school. It was a wonderful play and I really needed the diversion. They are so talented!

Today I am going to quietly rest and study for my Anatomy and Physiology final. I am also going to have Cassie help me make Nick a Star Board. He's Star of the week in K and I signed up for next week because I knew I'd have a light school load, LOL, Oh well we can still make it nice as long as I have someone to help.

Article about new research on shutting down autoimmune disorders without suppressing the immune system

New research about shutting down autoimmune disorders without shutting down immune system

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.

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!