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!
Wednesday, March 19, 2008
Tuesday, March 18, 2008
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 :)
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 :)
Monday, March 17, 2008
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 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.
Sunday, March 16, 2008
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.
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.
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!
Monday, January 14, 2008
New Year 2008
Off to a great start in 2008. I sent off my nursing school application, and all that is left is the proctored essay. I will take care of that on the 25th, and then in June I'll find out if all my hard work has paid off. I have 2 terms of Anatomy and Physiology left, and I am taking some upper division classes to cut down on my course load later. So far the term is going smoothly, except for Jake. He's having a tough time re-adjusting to being back in school and has had 5 bad days out of the last 7. Hopefully things improve soon.
In any case our new puppy Sparky is incredibly sweet and really bright. So all is good there :)
In any case our new puppy Sparky is incredibly sweet and really bright. So all is good there :)
Tuesday, December 25, 2007
Tuesday, December 18, 2007
His name is Sparky!
We finally all agreed on naming the puppy Sparky. And boy is he keeping me busy! Not that it's any shock that an 8 wk old puppy keeps a person busy LOL. He's into everything, and having a grand time trying to undecorate my tree. Luckily I have a baby gate to keep him in the LR with me so most of the time that is under control. He already has learned to sit!
Jake made a breakthrough and actually sat on the couch to watch tv tonight. First time ever in this house that he's sat on a couch. He is being so cute with Sparky. Petting him and having fun giving him toys. I can't explain just how amazing it feels to see that after so long dealing with the fear. I love the big grins he's giving me over this pup :)
Jake made a breakthrough and actually sat on the couch to watch tv tonight. First time ever in this house that he's sat on a couch. He is being so cute with Sparky. Petting him and having fun giving him toys. I can't explain just how amazing it feels to see that after so long dealing with the fear. I love the big grins he's giving me over this pup :)
Friday, December 14, 2007
New Addition
Yesterday I drove up to Portland to pick up our newest member of the family. No name yet but he's 1/2 Cocker Spaniel, 1/2 Golden Retriever. And 100% sweetness! He's really playful, but also calm. Our whole family is in love.
Thursday, November 22, 2007
So many reasons to be grateful!
Today I am thankful for:
My health
My family
My home
My friends
My pets
I can see, hear, touch, smell, taste, speak and laugh.
I have my own vehicle, electricity, running water and enough funds to meet my needs.
I could go on and on and on about the things I am grateful for. But my children are the stand out. I am so very grateful for the incredible progress they are making lately. The last few months have been filled with many momments of gratitude for big leaps of progress. Just today some major progress happened.
My son Jake let our dog lick his hand and was giggling. He threw a toy for her. He pet her ears to see how soft they were because his daddy asked him to. This is a child that 6 months ago still ran away screaming from a dog he's lived with for almost 3 years who only wanted him to pet her and love her. Now he's starting to. At thanksgiving dinner for the first time Max ate mashed potatoes and loved them, AND stuffing and loved that too. He grew 1 inch in the last 2 months. My little guy who was under the 5% for so long is now 5 ft tall! He grew 5 inches in the last year :)
In the past year Max has overcome his fear of dogs as well, and now loves them. He overcame whatever hangup he had about sitting on my bed and the couch and now will sit on them. This was the last holdout of odd behavior at home. He has NO odd behavior at home now. No refusals! It has been a miracle to me to watch him just unfold into a calm and happy person that most resembles a normal young teen boy after being a ball of anxiety for so long. I catch myself just tearing up in happiness about the most mundane things, because for me they aren't mundane, they are a gift. The fears and sorrow I had when I started this blog are melting away like snow in the hot sun.
The principle of RDI- productive uncertainty was the thing I hoped would make a breakthrough for the boys with the dogs. It was a combo of cognitive behavioral therapy- putting them in an environment where the dog was unavoidable, and time, and a bit of luck. She won them over, just like Nick did for Max when he was 5 months old and hero worship melted Max's heart. He couldn't resist the love. And in this situation with Taffy it was the same way.
After Jake pet Taffy tonight he came up to me and gave me a big hug and said "I love you mom" just because he felt like it. Yes I have so many reasons to be grateful tonight!! :)
My health
My family
My home
My friends
My pets
I can see, hear, touch, smell, taste, speak and laugh.
I have my own vehicle, electricity, running water and enough funds to meet my needs.
I could go on and on and on about the things I am grateful for. But my children are the stand out. I am so very grateful for the incredible progress they are making lately. The last few months have been filled with many momments of gratitude for big leaps of progress. Just today some major progress happened.
My son Jake let our dog lick his hand and was giggling. He threw a toy for her. He pet her ears to see how soft they were because his daddy asked him to. This is a child that 6 months ago still ran away screaming from a dog he's lived with for almost 3 years who only wanted him to pet her and love her. Now he's starting to. At thanksgiving dinner for the first time Max ate mashed potatoes and loved them, AND stuffing and loved that too. He grew 1 inch in the last 2 months. My little guy who was under the 5% for so long is now 5 ft tall! He grew 5 inches in the last year :)
In the past year Max has overcome his fear of dogs as well, and now loves them. He overcame whatever hangup he had about sitting on my bed and the couch and now will sit on them. This was the last holdout of odd behavior at home. He has NO odd behavior at home now. No refusals! It has been a miracle to me to watch him just unfold into a calm and happy person that most resembles a normal young teen boy after being a ball of anxiety for so long. I catch myself just tearing up in happiness about the most mundane things, because for me they aren't mundane, they are a gift. The fears and sorrow I had when I started this blog are melting away like snow in the hot sun.
The principle of RDI- productive uncertainty was the thing I hoped would make a breakthrough for the boys with the dogs. It was a combo of cognitive behavioral therapy- putting them in an environment where the dog was unavoidable, and time, and a bit of luck. She won them over, just like Nick did for Max when he was 5 months old and hero worship melted Max's heart. He couldn't resist the love. And in this situation with Taffy it was the same way.
After Jake pet Taffy tonight he came up to me and gave me a big hug and said "I love you mom" just because he felt like it. Yes I have so many reasons to be grateful tonight!! :)
Wednesday, November 14, 2007
One brick at a time
I survived 2 b-day parties at the bowling alley for my 2 younger boys, and next weekend is Max's 13th b-day. He is having a few friends over for a day of gaming. Much less stressful LOL. I cannot believe I'll have 2 teens in my house!
I am still averaging an A in my Anatomy and Physiology class. One more lab exam (muscles) and then the final to go!
I will be studying a lot in the next 2 weeks! Lucky me though, I only have to bring pies to Thanksgiving this year :)
I am still averaging an A in my Anatomy and Physiology class. One more lab exam (muscles) and then the final to go!
I will be studying a lot in the next 2 weeks! Lucky me though, I only have to bring pies to Thanksgiving this year :)
Friday, November 02, 2007
Birthday Season!
Tomorrow is Jacob's 10th birthday. We are having his party at the bowling alley. Oh how I love a b-day party with no clean up! It should be fun.
Here is one of my favorite pics of my red headed wonderful guy.
Here is one of my favorite pics of my red headed wonderful guy.
Sunday, October 28, 2007
CPR Pro
Yesterday I completed a Red Cross CPR Pro class. One more pre-requisite for the Nursing program out of the way! Another bonus, I am now sure I would know what to do if my husband or one of my children needed CPR. I even learned how to use a defibrilator if one is available. I think everyone should learn!
Monday, October 22, 2007
Parent Teacher Conferences
Good reports from all the boys teachers. Max will be going to a second mainstream class soon, and Jake has met one of his goals. Nick is thriving in K and his teacher says he is excellent academically, as well as really friendly and kind to everyone. I am a happy mom after those good meetings!
Thursday, October 18, 2007
Rest in Peace
I had to do the hardest thing I have ever had to do today. Rocky bit my mother who was visiting and I had to take him to the vet today and put him to sleep. It was an unprovoked bite, and with all his other neurotic fearful behavior we had to make the decision on the vet's advice that rehabilitation was unlikely to work in his case. I know I made the right choice, but I am just heartbroken about it. The worst part was having to have my son Max say goodbye. This summer Max overcame his fear of dogs and made friends with my mom's dog, and when we came home he bonded with Rocky. It broke my heart to watch him hug him goodbye. I am having him cremated and will be keeping his ashes and some fur the thoughtful vet tech saved for me. I was with him all the way to the end and he passed peacefully into the great reward. Happy hunting Rocky!
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