A week ago today, my employer helped my fundraising effort by allowing employees to wear jeans and/or tennis shoes to work for a donation toward my myositis awareness campaign. This week I was presented with a check for $385.oo...that's a lot of people wearing jeans to work for my cause. Many thanks to PyraMax Bank for presenting the opportunity and my sincere thanks to my coworkers for their generosity. I also received a number of envelopes in the mail this week. The word is spreading and funds are being raised to help with research efforts.
I am blessed.
Friday, September 25, 2009
Thursday, September 17, 2009
Today is better
Today is better than yesterday.
I didn't see any walls in front of me today that couldn't be climbed. I did encounter the stairs at work and chose the elevator. After a day like yesterday I have to remember that it's still important to budget my energy in order to keep from having "lows" that knock me out of commission.
I am blessed with great friends, a wonderful employer and the best family anyone could ask for.
Thank you.
Kris
I didn't see any walls in front of me today that couldn't be climbed. I did encounter the stairs at work and chose the elevator. After a day like yesterday I have to remember that it's still important to budget my energy in order to keep from having "lows" that knock me out of commission.
I am blessed with great friends, a wonderful employer and the best family anyone could ask for.
Thank you.
Kris
Wednesday, September 16, 2009
The wall...
Today the wall was just too high to climb.
I sure wish I could figure this out. There were weeks there when things were going along pretty smoothly. You all know that because I had nothing new to report and you saw days and weeks go by without an update.
Yesterday I talked about stepping in place. Today, I got up, got ready, got to work, realized that my coffee cup (with tea in it) seemed heavier than normal and my arms ached and the elevator was a better choice than taking the stairs. I looked at my calendar for the day and quickly came to the realization that I didn't have the energy today to take it all on.
When there are days and moments like this it takes a lot to just look at the facts and deal with them as facts and not emotionally. I left work and was home and in bed by 10:45. I got out of bed at 2:45 and by 4:00 I felt the same as I did at 10:00...exhausted.
Everyone deserves better on days like these...the employees I was scheduled to meet with, my husband and kids, the dog, our house, the phone calls that went unanswered and the emails that went unreturned.
I am very close to calling my doctor to let her in on what's going on but there is an internal struggle going on. I am OK with staying in one place for now, things have been running smoothly but I am terrified to report taking a step backwards. It is time to take a look at that lovely sermon from Pastor Henrichs and feel the comfort that comes with the permission to be weak.
If you don't know what I am talking about, the sermon is posted on my blog and I think it's called "I am weak".
My friends, I am going to go watch Jake play with his legos. I pray that the next post will report more positive news.
Thanks for checking in.
Kris
I sure wish I could figure this out. There were weeks there when things were going along pretty smoothly. You all know that because I had nothing new to report and you saw days and weeks go by without an update.
Yesterday I talked about stepping in place. Today, I got up, got ready, got to work, realized that my coffee cup (with tea in it) seemed heavier than normal and my arms ached and the elevator was a better choice than taking the stairs. I looked at my calendar for the day and quickly came to the realization that I didn't have the energy today to take it all on.
When there are days and moments like this it takes a lot to just look at the facts and deal with them as facts and not emotionally. I left work and was home and in bed by 10:45. I got out of bed at 2:45 and by 4:00 I felt the same as I did at 10:00...exhausted.
Everyone deserves better on days like these...the employees I was scheduled to meet with, my husband and kids, the dog, our house, the phone calls that went unanswered and the emails that went unreturned.
I am very close to calling my doctor to let her in on what's going on but there is an internal struggle going on. I am OK with staying in one place for now, things have been running smoothly but I am terrified to report taking a step backwards. It is time to take a look at that lovely sermon from Pastor Henrichs and feel the comfort that comes with the permission to be weak.
If you don't know what I am talking about, the sermon is posted on my blog and I think it's called "I am weak".
My friends, I am going to go watch Jake play with his legos. I pray that the next post will report more positive news.
Thanks for checking in.
Kris
Tuesday, September 15, 2009
One step forward, one in place
One step forward....I was really excited today to see that the word is spreading. Today an article posted on onmilwaukee.com regarding Myositis Awareness. This is truly grassroots effort and it took my friend Jenny getting in touch with her friend Molly to get the article written. A really great thing about the article is I could quickly pass it along via facebook as there is a "share" button right there. So around the world it will go.....that feels great.
One step in place...Today I called Tommy, my physical therapist and told him I needed to take some time off. I have had a decrease in energy or an increase in fatigue or more need to rest...call it what you like, I have had better days. Don't get me wrong, I have had days that are much worse as well. I am getting up, getting to work, but then coming home and resting until I have to get up because the school day is over and the kids are on their way home. It bothers me that I am not going to physical therapy as that is key in making me stronger but right now I am back to the place where I have to budget my energy and use it sparingly.
It reminded me of an article I read about another myositis patient where she said, "you really don't remember what 'good' feels like anymore" I do remember very clearly what 'the worst' felt like and I am not there. My legs still carry me up and down the stairs. My arms still squeeze my husband and kids and my smile is hanging in there too.
Thanks for checking in...
Kris
One step in place...Today I called Tommy, my physical therapist and told him I needed to take some time off. I have had a decrease in energy or an increase in fatigue or more need to rest...call it what you like, I have had better days. Don't get me wrong, I have had days that are much worse as well. I am getting up, getting to work, but then coming home and resting until I have to get up because the school day is over and the kids are on their way home. It bothers me that I am not going to physical therapy as that is key in making me stronger but right now I am back to the place where I have to budget my energy and use it sparingly.
It reminded me of an article I read about another myositis patient where she said, "you really don't remember what 'good' feels like anymore" I do remember very clearly what 'the worst' felt like and I am not there. My legs still carry me up and down the stairs. My arms still squeeze my husband and kids and my smile is hanging in there too.
Thanks for checking in...
Kris
Wednesday, September 2, 2009
Kris Barger's 2nd Annual Myositis Awareness and Fundraising Campaign
You may have received this in an email format but if I didn't have your email address and you are still checking in on me, I wanted to reach out to you as well.
As many of you know, last year I had a walking campaign to raise money and awareness for Myositis and Myositis research. This year I would like to reach a greater audience and am hoping to connect with local media to assist me. I am not sure if you have connections with local media but I would appreciate your assistance if you do.
Although I can't attach it to my blog, I have a draft news release I received from The Myositis Association which will provide some general information regarding this rare disease.
This year I volunteered to co-chair a support group here in Wisconsin. We are just at the beginning steps of that process but it would be wonderful to reach out to a larger audience and offer the support and services of the Myositis Association.
I would be willing to share my story and can be contacted either by email or phone.
I have a campaign site set up again to collect money for research.
Please visit www.myositis.org. On the home page you will see
You can make a difference
Learn about TMA members' campaigns to raise funds and awareness for Myositis.
Click on TMA members’ campaigns and click on Kris Barger’s 2nd Annual Myositis Awareness and Fundraising Campaign.
I appreciate your assistance and your thoughtful consideration in making a donation and helping me raise money and awareness for this rare muscle disease.
Sincerely,
Kris L Barger
414-228-0971 (home)
414-858-2991 (work)
As many of you know, last year I had a walking campaign to raise money and awareness for Myositis and Myositis research. This year I would like to reach a greater audience and am hoping to connect with local media to assist me. I am not sure if you have connections with local media but I would appreciate your assistance if you do.
Although I can't attach it to my blog, I have a draft news release I received from The Myositis Association which will provide some general information regarding this rare disease.
This year I volunteered to co-chair a support group here in Wisconsin. We are just at the beginning steps of that process but it would be wonderful to reach out to a larger audience and offer the support and services of the Myositis Association.
I would be willing to share my story and can be contacted either by email or phone.
I have a campaign site set up again to collect money for research.
Please visit www.myositis.org. On the home page you will see
You can make a difference
Learn about TMA members' campaigns to raise funds and awareness for Myositis.
Click on TMA members’ campaigns and click on Kris Barger’s 2nd Annual Myositis Awareness and Fundraising Campaign.
I appreciate your assistance and your thoughtful consideration in making a donation and helping me raise money and awareness for this rare muscle disease.
Sincerely,
Kris L Barger
414-228-0971 (home)
414-858-2991 (work)
A rough start...
Today was one of those days where I was reminded that I am sick. The last few days I haven't felt "right" and the last two nights I have had a really hard time sleeping. I can't get comfortable. This morning the muscle weakness (primarily in my hips and legs) and fatigue hit a high. I showered, I tried to get going but quickly realized defeat and went back to bed. Emma popped her head into my room before she left and smiled and said "I hope you feel better soon mom"
I did not want to be in bed. I wanted to be part of the morning hustle and then kiss everyone and head off to work but today it was not about what I wanted.
I'm OK.
I think I will be able to be part of the excitment tomorrow morning and I think I will be able to go back to work. I hope I will be able to sleep more comfortably tonight, that will make all the difference for tomorrow.
Thank you for checking in. Now that the school year has started we are going to get back into some kind of a routine and I hope that means more posting to the blog.
Take care.
Kris B
I did not want to be in bed. I wanted to be part of the morning hustle and then kiss everyone and head off to work but today it was not about what I wanted.
I'm OK.
I think I will be able to be part of the excitment tomorrow morning and I think I will be able to go back to work. I hope I will be able to sleep more comfortably tonight, that will make all the difference for tomorrow.
Thank you for checking in. Now that the school year has started we are going to get back into some kind of a routine and I hope that means more posting to the blog.
Take care.
Kris B
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