CT Scan

I saw Dr. Adl yesterday and the results of the CT scan are good.
There's no inflammation. YEAH!
The tapering of the prednisone can continue very slowly. I am at 10mg right now and can't wait to report the day when I can do without.
My next doctor appointment is November 2nd and hopefully at that time we can formulate a plan for the other medicines.

I mentioned in one of my emails that I wasn't sure if I was believing in myself as it related to what I could accomplish physically so in September I committed to 150 minutes of exercise each week and I did it. In October I bumped that up to 160 minutes per week and so far I have also been able to keep up with that. I plan to continue adding 10 minutes a week each month for as long as I am able. It's slow but it's something and I feel good about it.

I ____because I can. Right now I am swimming, walking, riding the bike and just this week added some weights to that.

Thank you for checking in.

Quote for today - I saw a cartoon that says "I'm always losing my car keys, my temper, my memory and my patience...so losing weight should be a breeze!"

What was it like in St. Louis...

First and foremost it was great to be there with my mom and dad and three sisters. We always have a wonderful time when spouses and kids are along but just dad and his girls was a little like the old days. Although anyone of them would have been more than happy to come with me to the conference, it was really something I wanted to do on my own. They toured and texted me regarding their whereabouts and we met at the end of the day and enjoyed some great food, music and time together.

I have mixed feelings about the conference. There were about 300 people that attended (this included care-givers as well as those with one of the four types of myositis). The first meeting was a getting to know you session separated by disease type. It was amazing to be in a room with at least 30 other people with dermatomyositis.
The good: I'm 'normal' in the world of those effected by dermatomyositis. The majority have not gone into remission. The majority are trying to find the winning combination of pharmaceuticals to keep them moving along. The majority are not able to work full time and struggle with fatigue and muscle weakness. The majority have found a level of acceptance that life has changed and this is the new 'normal'.
The bad: It was hard to see that some needed to use a cane to get around and others a scooter or wheelchair. It was had to hear that many have not gone into remission. It was hard to hear that there is not a medication that works for everyone. It was hard to hear that many are not able to work full time and struggle with fatigue and muscle weakness.
Get it?
I guess it just depends if you are the person who sees the skies to be partly sunny or partly cloudy, the glass half empty or half full....

I promised to tell you about "I'm winning"
Here you go...
I'd like to repeat Mike's whole speech but I wouldn't do him justice and based on what I heard, someday you may have an opportunity to hear him yourself. He could have a career in motivational speaking in front of him.

• He's a wrestling coach taking his team to a new level and during the process was diagnosed with polymyositis. Before his diagnosis he signed his emails and letters with the following closing "in relentless pursuit" and he shared that it means more today than it did when he first started using it. That was a lightbulb moment for me. I remember when I got my bee tattoo and what it meant to me then. Although I like my tattoo and I got it as a reminder of what I could accomplished because I believed in myself. The lightbulb was a question...Have I stopped believing in myself? Have I stopped believing in what I can accomplish physically? I'm revisiting that and will keep you posted.

Other important things that Mike said...

• The disease is not the forefront of who he is. I like that.
• When someone says to Mike "You look great" he replies "thank you, I appreciate that."
• When someone asked Mike how it feels to have myositis he compares it to a terrible case of the flu. Think about it....how do you feel? You ache, you're tired, wiped out. You feel lousy but you don't want it to get the best of you. That's how it feels. It's a great description!
• Want motivation? Look for it in those around you.
• Daily affirmation...."am I being the person my spouse fell in love with?"
• Courage is earned. It's a personal decision you have to make.

Finally, Mike wakes up every morning, puts his feet on the ground and says "Today I will be winning. I'm going to live the life I want." When someone asks Mike how he's doing or how he's feeling he replies...."I'm winning."

Thanks for checking in. Update on my fundraising efforts will be the next post.

Dr update

I saw the doctor this week and shared with her that fatigue is increasing along with some muscle aches and weakness. There are a few things that could cause this.
First, the drug I was taking before I had a lung issue was working very well on my muscles but it was not a lung drug therefore when I had to start taking the lung drug the other drug had to be stopped. It could be that all the goodness of the old drug has finally left my body and now I am having muscle issues again.
Second, it could be that I need to taper the prednisone at a slower pace. Tapering too quickly can cause adrenal suppression and show up as fatigue and muscle stuff.
She called this morning and the labs look good so she thinks it might be the prednisone. I guess if I had to pick the best of the bad, that's the one I would have picked. It means I have to go back up on the prednisone and come back down much more slowly. Back up to 15 for a couple of days and then down to 12.5 for two weeks and then we will try 10 again and see how I do.
I will stop in and post more over the weekend.
Right now I am going to rest for a bit before Jacob gets home from school.
I can't wait to tell you about "I'm winning today."
Kris