Not bad...

December 1st and for the next 30 days I will be down to 5mg of prednisone. After that I will transition to hydrocortisone which is more to help the adrenal glands than to treat the disease. It's nice that the weaning of prednisone has been successful. It's slow but remember that saying "slow and steady wins the race", I am counting on that in many aspects of this journey.

Work has been very busy. I had found a good balance between work and life between 25-27 hours a week. This past month it's been more frequently a 30 hour week and that takes it's toll on everyone. I just do not have anything left to give after a week like that and I spend my time at home recovering for the next day instead of doing the things I love doing. OK, many of these things I don't love doing but not being able to do them sheds new light on the task...dinner, laundry, dishes, helping with homework, walking the dog or going to the gym.
Should do them...yes
Want to do them...not really.
Can't do them because I am to wiped out...stinks!

Friday morning I go back for my monthly labs and the results of those tests will be the guide for whatever else is to come on the medical journey.

Here's a plug for CVS. We left for Chicago on Friday and half way there I realized although I had packed my pill boxes, I had not taken the time to refill them. I called the doctor to see if I could skip them for two and a half days and the answer was no. Our faithful GPS guided us to the nearest CVS to our hotel and within 20 minutes I had what I needed to get me through the weekend, no hoops to jump through, no questions asked. Everything I needed, everything they needed to meet my needs was right there in the computer. Yeah CVS.

Well, that's all for now. Thanks for checking in.
Please remember that as you prepare for the upcoming holiday season that it's not about being perfect...the perfect gift, the perfect wrapping paper, the perfect dinner or perfect decorations. What's perfect was the gift of Jesus. That's the only thing that's suppose to be perfect about Christmas. God planned it that way.

Did you just feel the weight come off your shoulders? I heard a similiar message a couple of years ago on Christmas eve and the since then the Christmas seasons have been more joy-filled.

Joyfully yours,
Kris B

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

Too long, too much....

It's been too long since I posted a message and now I am overwhelmed with too much to report.
I'm going to have to take this in little pieces I think. In the days and weeks to come I will share with you information from the Myositis Walk and Myositis Awareness Day, the trip to St. Louis and the National Myositis Conference (this will surely be a number of posts as there is so much to share about the experience), an update from the doctor (going tomorrow morning), etc...

Right now I wanted to share with you that the reduction in prednisone is not going smoothly. I tapered down to 10 mg on Thursday and it's either that or the laps around the track last Sunday or the significant change in my routine over the weekend or a combination of all of these things that is knocking me over. As I am typing I notice the burning/aching in the muscles in my arms and neck. I have had to nap nearly every day for the past week. I am hoping to find the strength and patience to stick with the tapering schedule. OK...going to rest for 20-30 minutes and then will start dinner.
I will be back sooner rather than later.
Kris

One month down

It's been just about a month since I started cytoxin. I don't feel any different. This week I did get the OK to start tapering my prednisone and that is a good thing. For past two days I have been taking 15 mg, down from 20. Now I don't know if it's the bike ride I took last night or the reduction in prednisone but I am significantly more achey than I have been.

Over the past two weeks I have set a goal for myself to exercise 150 minutes each week. Last week I fell short by a half hour. This week......success. I have 17 minutes left to go and I plan to complete that this morning. My reward is a pedicure and my toes are so excited.



I am counting down now for the days until the Myositis Walk...just 8 days to go. So far I have about 65 people registered to walk. My goal is to have 100. Please pray for fair weather. By that mostly I am hoping that it doesn't rain.



Somehow, it will all come together.

Day 2

On Monday I called the doctor to check on the lab results and although it took awhile everything indicates that it's OK for me to start taking the Cytoxan.
Yesterday I felt a little yucky around 11:00. Today I don't and I consider that to be a very good thing. I am drinking the required water and much more. Easily I drink 96 oz of water a day and after that I stop counting. This will continue to be very important because I don't want the drug to be sitting around my body messing things up. The water will flush away what's not suppose to be there.

I finished my pulmonary rehabilitation on Monday afternoon. It was very valuable experience. I learned a lot and met some wonderful people. One of the wonderful people I met was Marguerite. I know I have mentioned her before. She died last week. Her lung transplant didn't come in time. Meeting Marguerite opened my eyes to many of the blessings this diagnosis has brought me. Although Marguerite also had interstial lung disease, it wasn't diagnosed right away. The early symptoms shortness of breath and a dry cough wouldn't cause too many people to seek medical attention and even if you did, they might be inclined to tell you that there is nothing wrong.
A blessing that continues to present itself in my life is that early on while they were trying to figure out what was wrong with me I received a baseline test for just about everything...the acronyms MRI, CT, EKG, EMG all became too familiar...they looked at everything and took a baseline picture of everything. Over the years I have also learned how important it is to listen to my body. If something's not right, I don't sit around and wonder about it very long. That's what happened with my lungs. One morning I just said enough is enough. I should not be coughing every morning. There was a baseline CT of my lungs and a new picture was taken and there you have it, a new diagnosis, caught in the very early stages and treatable. What a blessing!

The end of my pulmonary rehab means that my schedule opens up a little and gives me some flexibility I didn't have before but before I go filling it with new things I need to figure out a way to continue that commitment to exercising at least three days a week. Today I have to take Jacob to swimming lessons so I am committed to swimming during that time. There...it's on the schedule. I have an appointment to get it done.

My friends, thanks for checking in. I appreciate your continued thoughts, prayers and support.

Kris B