Tuesday, April 29, 2008

Feeling so great!

The last 2 days I have felt totally normal! I stepped my prednisone down another 10 mg so I'm at 80 mg now. No new blistering. I was able to totally drop the sleep/itch med as well.

The painting/flooring/household maintenence phase is finished and now I am sorting through everything and getting it put away. I had the closet doors replaced so now my hallway looks so tidy with doors on my pantry. I also had the handyman add a shelf over my laundry area for more storage, fix the broken hinge on the kitchen cabinet and the broken drawer all for $375 including the supplies! Quite a bargain for the work and he did a very nice job. I am really happy to have found someone who is prompt, polite and does good work for a reasonable rate for household repairs. This will really reduce my stress level!

I also got an A on my lecture exam. Lab exam is on thursday and I feel really good about this term so far.

Sunday, April 27, 2008

What a difference a month makes!

One month ago my arms were covered with huge blisters. Here is what they look like today!

I still have more rash in other places that is healing, but oh my what a relief. Barely any itching, only a few hot spots and the medicine is clearly working. My potassium level tested in the normal range at the second blood draw so I just have to watch to make sure I get enough in my diet and I should be fine.

In other news I got an A on my 1st lecture exam, and the lab exam is on thursday. I feel very confident about that exam as well.

The new flooring is all in and we are moving our furniture back in today. Life is feeling almost back to normal :)

Thursday, April 24, 2008

Adjusted meds

I lowered my Prednisone dose down 10 mg on Tuesday. So far only a few tiny tiny blisters behind my ear and one in my mouth. About the same amt of blistering I was getting on the 100 mg, so I am sticking with the lower dose. My Derm called and left a msg saying something about my labs having a value that she didn't like but she hasn't called me back yet. Overall my body is healing and I really hope I can stay on the Cellcept because it is working and I want to get the Prednisone lower. There is another med we can try if I can't tolerate the Cellcept for some reason.

Thursday, April 17, 2008

Amazing Grace

I went to Accupuncture today, and as usual it was just what I needed. Kara Miller at Jade Mountain Medicine is my Accupuncturist and she is just so talented and intuitive. Today the music playing was Native American and on the CD was the most beautiful version of Amazing Grace in a Native Language (Not sure which tribe) accompained with Irish Music. Interesting combo that really resonated with me. I had some pretty bad edema on Monday and Tuesday and the treatment I had on tues took care of it almost completely! It helped today as well with everything. I am healing very fast. Still on 100 mg Prednisone, trying to reduce it was too soon earlier this week. I have NO new blisters today, and the others are fading. My forearms look SO much better. Hard to believe I had huge blisters there only a few weeks ago. I will take a pic and post so you can see how much better I look.

I feel almost normal today! :)

Monday, April 14, 2008

In the Clear

Today I had my follow up U/S for my rt breast. It went fine. The area they wanted a closer look at they pretty much came to the conclusion what they saw is normal lymph tissue. So I can relax on that front.

I also had an apt with the opthomologist today and he won't rule our MMP for now. He says we will wait and watch and he's fairly certain its just BP but he thinks it bears watching closely due to the mouth/throat involvement. I will continue with the eye drops. He feels the Cellcept and Prednisone will help with the eye enough I should be able to wean off the drops eventually. He also warned me I will most likely end up with Cataracts from the Prednisone and eye drops, but not to worry about that for now as that is a long way off. I also found out my optic nerves are at a funny angle. Nothing to worry about, just the way my eyes were made. I go back to see him in 2 months.

As for the rest, tomorrow I have class and an apt with the disability services office. I want to get in the system just in case I need a note taker or something later in the term.

Sunday, April 13, 2008

It's working!

Since I have started the Cellcept I have only gotten a few new blisters. Overall in the last week I have noticed a dramatic downturn in new rash and blisters. Today I got a few behind my ears, and they are all very small. The rash itself is still there, but only "hot" in a few places. The only side effect I have noticed is my ankles and feet are quite swollen. So I've elevated them as much as possible.

Friday I had an IEP meeting for Jacob. It was a very positive meeting. He has made a lot of progress this year. He will be going to the 5th grade at the middle school with the same teacher Max has had this year. She has been able to help Max so I feel confident Jake will be in good hands. He is excited about it as well.

I also had an apt with my dermatologist in Medford. I'll see her again in 6 wks. I will see Dr. Morrison at OHSU in June.

We finished up the painting in Max's room and will be moving the furniture today so he can move in! Then I have to put the office things back into the desks and tidy up the kitchen and LR where all of it has been waiting. Next week the flooring goes in the bedroom so those things will need a place to be moved before the end of the week. It feels like a sliding puzzle where you have to rearrange the pieces! And of course I have a bit of studying to do today as well.

Thursday, April 10, 2008

Another good day

Yesterday I was very tired from all the travel, and I am also pretty tired today. I had lab and lecture for Anatomy and Physiology and then Accupuncture. I decided to drop all my other classes so that I can heal and focus on what I really need to do.

Since Monday the blistering has been minimal. Only a few new ones mostly on my neck and face and shoulders. The overall rash is fading a bit. I started the Cellcept today. Hopefully it will knock this thing out fast. It is starting to feel like it might be on the way out :)

Tuesday, April 08, 2008

What a weekend!

Friday I flew to Dallas for the International Pemphigus/Pemphigoid Conference. I checked into the hotel and went to the Welcome Reception. I promptly realized that this was going to be an amazing weekend. I met and talked to at least 5 people in those 2 hrs alone. Everyone was so open and friendly and I got a chance to talk to two of the physicians right away. I walked out feeling just that evening was worth the $ to go!

Saturday we all left to go to Univesity of Texas where the lecture/discussion took place. We had a welcome breakfast, then hours of different presenters and Dr's and snacks and lunch and more snacks. They fed us very well, and kept us supplied with a variety of beverages as well. The Dr's answered questions and it was far more interactive and intimate than I expected. We had about 70 participants, including spouses/caregivers.

Saturday evening I met up with my online friends from my "baby" playgroup and we had a great time out to dinner. It was so nice to finally meet Kelly and Ann in person!

I learned so much that will help in my treatment. Sunday I went out for breakfast with two new friends, then over to the conference for more presenters and discussion and questions. I got to speak to a total of 5 Drs for about 10 min each and they all told me to go see Lynn Morrison. Two of them had worked or gone to school with her. As it turned out, the Dr that My derm made me an apt with at OHSU is the same Dr so I'm in good hands :)
The only rough part about the conference is that I pretty much couldn't sleep. Thurs I got 0 hrs, Fri 3, Sat and Sun 5 hrs each. Luckily I felt o.k. despite that, even getting new blisters Thurs, Fri and Sat. Prednisone can make it hard to sleep and I am on a high dose for now. I slept much better Mon, with 7 hrs.

Sunday afternoon I met another online friend Shiela for a tour of Dallas and dinner. She is a professional geneaologist and we had a grand time talking about our enjoyment of finding hidden family treasure. We walked around the art area and I had the opportunity to take photos of the loveliest little Catholic Church that had the same layout as the church where Lane and I got married. It had incredible stain glass windows.

Monday was my birthday and I flew home, then we went out to dinner to celebrate with my dad and grandma. I didn't feel like it was my birthday until I got home. It was so nice to see Lane and the kids!

Since I had an Apt today in Portland, I quickly bought plane tickets and flew up today. It was going to cost me about the same with hotel, gas, etc and I knew I was in no shape to drive after the sleep deprivation I had all weekend. I got off the plane, and took the light rail train downtown, then caught a cab to the OHSU Dermatology Clinic. I was very impressed with Portland's mass transit! They have a tram that I could have taken directly to the clinic from the light rail if I had known about it. I took that on the way back.

I met with the Dr and about a million residents. I was quite on display :lol They were all very impressed with my rash and blistering and took pictures. This dermatologist was highly recommended by the Dr's at the conference. 2 of them had worked or gone to school with her. So I got lucky that my local derm got me in to see exactly who I should see in OR. She had them take a few more biopsies (to rule out a few other possibile things and to re-do the Pemphigoid biopsy) and blood and is switching my meds to Cellcept which is what I wanted, and lowering my Prednisone to 100mg.

We also agreed that I need to see an Endocrinologist to monitor my endocrine system and minerals, etc because of the high Prednisone dose, and get a bone density scan and to go on Fosomax to preserve my bones from the effects of the Predinsone. She says if I don't respond to Cellcept, we'll try Dapsone next, and then Retuximab which the Ins won't want to pay for at $30k a month :eek She is also open to trying the IVIG if we need to. She says that the ins co will come around because of the pics. BP is usually much easier to treat, often just with medium to low doses of Prednisone so my pics are pretty dramatic and she feels that should convince them it's needed if we do need to go that route.

I feel I am in very good hands and I am really hopeful that this other drug which is considered quite safe will knock this thing out! I will be emailing her and calling her with updates, and see her in person in about 3 months as well as seeing my derm here.

Thursday, April 03, 2008

Imuran is not going to be the cure for me

I just got off the phone with my dermatologist. Apparently the blood test shows I don't make enough TPMT a liver enzyme because I am homozygous (got the same gene from both parents) and don't make enough genetically. So my liver can't metabolize the Imuran completely so that explains why it isn't working for me. So I'll be on the lowest dosse of Imuran until we can figure out what to treat me with. My derm is sending me up to Portland to OHSU for a consultation since she's never treated BP with anything except Imuran. I feel relieved knowing why the meds weren't working and even though I'm still uncomfortable this gives me hope another therapy could work.

I am packed and just wrapping up loose ends today for my trip. I fly to Dallas bright and early tomorrow morning :)

Wednesday, April 02, 2008

First Week of New Term

This term I will have class on 2 days a week T/Th. Yesterday was my first day of the new term and my long day. I have a group counselling class which helps out graduate pychology students from 9-11. Anatomy and Physiology lecture from 12-1 and then Health Psychology from 4-8. The Health Psychology class will be challenging as the professor is a perfectionist. I think I can manage it though. We will have 3 exams, and a 45 minute group presentation on a Behavioral Health topic. Lots and lots of research for that one, and very set perameters on what we need to cover. Which is a good thing, as it defines expectations ahead of time. Those won't happen until May so plenty of time to work on them which right now is a good thing.

Health wise I slept well, but woke up to a LOT of new red rash, which is what it looks like before another round of blisters. One day on a lower dose of the Imuran isn't looking promising. It is a take it very easy kind of day today. Both my younger boys are sleeping in since they are exhausted from Sunday night. They would NOT go to sleep and finalyy did at midnight but they are paying for it now. Rather than send them to school cranky since I don't have to go to class today I'll just let them sleep and take them in before my accupuncture apt at 10. Some days you just have to go with the flow!

Tuesday, April 01, 2008


My husband has just had his annual review. Blindsided by a lateral move to another team, from computer development to Q&A. He did get a 2% raise and moved to salary, but it feels like a demotion to be moved without notice, and the only one in the restructuring to be moved to another team. I am sad and frustrated for my hubby. He is a good man, works hard and doesn't complain. He's not a dazzler, but he gives good service for the $ he is paid and deserves more respect.

In other news- I had to cut back the Imuran, something in the pre-medication blood work is low and she doesn't want me on the higher dose. If it was working at the higher dose I'd be less nervous about that but I'm still getting new batches of blisters every couple of days.

CAT scan Results

Beautiful to hear, all is NORMAL!! :) I can breath a bit easier now.