My Blog

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.

Sprinklers are awesome! They’re even better on a hot, sunny July afternoon.

“Those construction workers are the most awesomest ever!”

The street on the side of our house is getting re-done.  The one day we got to sit in our yard and admire their work.  In the middle there was a mountain of dirt.  On each side were huge holes deep enough for the workers to stand in without being seen.  There were tractors going back and forth.  It was amazing if you are a short boy!

Then we had to stop watching to bring Zoey to visit the vet for her annual check-up. All is well with Zoey. The boys did well entertaining themselves while we were there…

 

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.

Our happy family went north for the weekend of the 4th of July.

We had our usual cabin fun of course.

Like our cabin version of skeleton.

And the boys got their own fishing poles!  They loved it until a fish was actually caught.  Small steps.

Then there was the bonus festivities!

We started with the parade in town.  The boys found their headphones that were meant for fireworks but they work well for loud sirens too.

Then we went to Pede’s for fun before the big show.

Then we got on our boat and got to watch the fireworks from the lake. It was pretty cool!

We have had some good weekends at the cabin so far.

Tex decided to enjoy a little pedicure on the boat

Then we enjoyed the sand bar for awhile. The lake is so high that there wasn’t much sand showing but the boys made it work by using the back of the boat.

The boys are constantly looking for new adventures.

They also pulled out the wagon. After the big people pulled the two boys around, Tex tried to take his turn pulling. It didn’t work so well but he put in a valiant effort!

Boat rides can be fun too

Even with all the fun and adventure… cabining can be a serious thing

Peter was so very excited to turn 6.  He worked hard to make his wish list and help come up with the lego theme.  We started with the friend party.  It was at the park by our house.  We invited his class from school.  A handful of friends were able to come celebrate.  I think everyone had a great time, especially my big 6 year old!

Then we invited family to our home to continue celebrating. It was great to have different family members together.

Thank you everyone who helped celebrate!

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!