The box house was set in the garage… complete with a door, window, and dvd player
We all voted as a family
We loved seeing Big Hero 6.
Snow is here and I don’t think it’s going away any time soon.
I got to have a helper during my last conference at work
Happy Thanksgiving to everyone!
Today is the day we reflect on all that we are blessed with. I look around and know that I am loved. I have a wonderful husband and two awesome boys. My extended family is close and supportive. My work is truly a work family that I am happy and proud to be a part of.
Of course there are crappy parts of life. There will be for anyone. But it’s the fact that I have so many things to be thankful for, that I can get through the tough stuff… and be stronger for it.
We have a self-published author in the house. Peter had so much fun working on his book and we read it VERY often in our house. Others should get the privilege of reading it too.
I see my new brain doctor on Monday. I’m weirdly excited and nervous all in one.
I’m excited to see what they have to say. It will be interesting to see if they have anything new or different to tell me. I’m excited to see if they will listen and treat me as me and not just another case. I’m excited to learn.
I’m nervous that they won’t have anything new or helpful to say. I’m nervous they will tell me something I don’t want to hear. I’m nervous they’ll find new holes or new problems. I’m nervous that they’ll put me back on the shots. I’m nervous that it will just be more of the same.
I’m scared but hopeful. I’m trying to stick closer to the hopeful side but it doesn’t always work.
Growing up I remember looking forward to MEA weekend.
It’s two days in October that kids in Minnesota get off of school so the teachers can go to workshops. I know some teachers go to awesome workshops and get lots of stuff and knowledge. I know a lot of other teachers enjoy two days off instead.
In our household it meant going and doing something. We would either do a quick vacation or go out on the town. We’d try to do something with a little educational value, like museums.
It meant eating lunch out and quality one on one time with mom.
MEA is still going strong, although I think it’s officially called something else now.
I felt strongly about continuing the tradition of going and doing something with the kids.
Mom still takes the days off, even though she has no connection to school days off anymore. So I got to take my boys and my mom to the History Museum this year.
We had a great time exploring, reading and learning, and being hands on with history.
Of course we had to get lunch while we were out and it just so happened that Cossetta’s was right there. It was like it was meant to be. The boys weren’t sure until they sat down with their slice of pizza that was the size of their heads.
After we were full, we decided the day wouldn’t be complete without a little shopping. We went to Once Upon A Child and found a ton of stuff! I’m going to have some handsomely dressed little men. Then we went down the strip mall to the shoe store. Mom wanted new shoes. Somehow we ended up buying new shoes for everyone but me! It was not fair. I did take a picture of the ones I’d like. Maybe some day I’ll get my turn.
I know in the world of MS, I have little to complain about. That doesn’t mean that it doesn’t suck.
I thought the pill was going to be a life changer. I was so done with shots that I gave my supplies away. Shots hurt. Shots leave lasting marks that still linger. At this point I’m ready to go back to shots over the side effects of the dumb pills. I can’t do it any more.
I get looks when I complain but they aren’t the ones putting up with the daily struggles internally and externally.
Every day my brain starts to tingle. Then my face gets red and hot. Finally red itchy splotches creep from my neck and wrists outward. It’s a horrible and frustrating experience. I feel like my red face is a beacon for everyone to look at. My body itches and I can’t focus on life at that point.
I guess in the long run a red face is better than limbs not working but it’s hard to tell myself that when it’s happening.
I told my brain doctor about the problem and he basically brushed me off. Now not only am I struggling with drug issues, but I’m feeling guilty for looking for a new doctor. I feel like I’m cheating on him and I haven’t even called any one else yet.
I wish I was an ostrich and could just stick my broken brain in the sand.
My dearest friend Bethy was due July 13th with her first baby boy. As any person who’s been pregnant, much less pregnant in the summer, knows… she was ready to be done much before that date so when it came and went, she put in the eviction notice. It only took him 4 more days to get the hint and he decided it was time.
I had the honor and privilege to be there with Bethy and Bob as they welcomed their sweet little boy into the world. Going through the process twice on my own, it was a whole different thing to be on the other side. I am in awe at how amazing and strong we are as women. The process of bringing life into this world is beautiful, messy, and emotional. I am so grateful for the chance to witness such a miracle.
I still have skin!
I thought I’d update that I was in fact pretty special this past week. I started itching and thought it was just hives. When I couldn’t take it anymore and hoped the doctor could give me something better to help, I found out I actually had erythema multiforme. My body was reacting to either one of my medicines or a random virus.
The fun part was when my face, and more importantly my lips, started to swell that they were concerned it was something more. The doctor said I may have stevens-johnsons syndrome. That would make my skin start to fall off and could lead to death. I was told that I should go to the hospital immediately if anything weird happened. That is not a reassuring thing to hear!
Thankfully, nothing weird happened and I didn’t develop stevens-johnsons syndrome. My skin didn’t fall off. The rash from the other thing is still working it’s way out and has left marks and bruises but it’s at least on it’s way out.
It’s never a dull moment in the world of me.
I’ll post pictures of my big 6 year old and his birthday shortly… I’ve been busy trying to keep my skin
It was a beautiful day to celebrate Easter!
It felt so good to have the sun shining and be outside.
It was awesome to be able to enjoy the sunshine with family.
Happy Easter!
