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)
Wednesday, September 2, 2009
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
Thursday, August 27, 2009
There is no new normal
There is no new normal.
I continue to pursue such a thing but in reality there is only today, this moment.
As you know, it's been quite a while since I have last posted. It's summertime, we are busy and nothing has changed. I am still on the road toward remission. Same lab results, same medications, same number of approved work hours....yah da, yah da, yah da. The biggest change I have made this summer has to do with activities around the house. I am now doing more of the laundry, making more of our meals and in general trying to take back some of the things that Bill has been doing for so long. You know there is only so much one man can do and he has been doing it all.
Today, let me tell you only this one thing...my life is blessed with a wonderful husband, sweet children, an amazing family and great friends.
I have been blessed!
PS - I am pondering a second myositis statement (maybe a shirt, maybe notecards, who knows...but you, my faithful friends will know first when it is revealed)
I continue to pursue such a thing but in reality there is only today, this moment.
As you know, it's been quite a while since I have last posted. It's summertime, we are busy and nothing has changed. I am still on the road toward remission. Same lab results, same medications, same number of approved work hours....yah da, yah da, yah da. The biggest change I have made this summer has to do with activities around the house. I am now doing more of the laundry, making more of our meals and in general trying to take back some of the things that Bill has been doing for so long. You know there is only so much one man can do and he has been doing it all.
Today, let me tell you only this one thing...my life is blessed with a wonderful husband, sweet children, an amazing family and great friends.
I have been blessed!
PS - I am pondering a second myositis statement (maybe a shirt, maybe notecards, who knows...but you, my faithful friends will know first when it is revealed)
Friday, July 10, 2009
Here's the sermon...
I saw Pastor Henrichs this afternoon when I went to see the kids Vacation Bible School performance. It was great. It is so neat to see little kids as God's messengers.
Pastor said I could post the sermon and I think the best way to do that is by giving you the blog address. Thank you Cate, you saved me from having to try to figure out how I could post a link.
Have a wonderful week-end.
http://oursaviorwfbsermons.blogspot.com
Pastor said I could post the sermon and I think the best way to do that is by giving you the blog address. Thank you Cate, you saved me from having to try to figure out how I could post a link.
Have a wonderful week-end.
http://oursaviorwfbsermons.blogspot.com
Thursday, July 9, 2009
It's been a good week
It's been a good week on many levels and it started out on Sunday morning with an awesome sermon by Pastor Henrichs. It was so good, and I know that there will be more times that I need to hear it that I had him send me a copy. I am going to ask him if it's OK to post on my blog and if he says "yes", I hope you will check back and take it in. I can't even put it in a nutshell for you, what I can say is it was a reminder that we do not need to be strong. We all have thorns that we may pray, and beg and plead be taken out of our lives and if the answer isn't what we want, it doesn't mean God isn't listening...it's there for a reason.
I have been pursuing "being strong" or getting stronger for years now and it's exhausting and frustrating, yet through it all, God continues to bless me, I am always driven by the sense that there is a greater purpose for me and my life than what I might have mapped out on my own.
This permission to not be strong gave me the willpower to go to the yoga class I had signed up for months ago but was now dreading. I didn't want to be the one person in the room that couldn't do it. I didn't want to be weak and certainly not in front of people I didn't know and who didn't know me. I didn't want to have to explain the reason behind my weakness, I wasn't going to go. I had permission this week to not be strong and I went. I am glad I did. The instructor (a friend of mine from Bunko) gave me some pointers before class. She was encouraging and positive and understanding and all the things I needed for trying something new. I loved it and am looking forward to next Thursday evening.
This week I saw Dr. Cohen. I think we are both comfortable with the fact that although the disease is still there, it is stable on medication. The meds, along with the balance I've achieved between work and home, eating foods that are much better for me, getting rest when I need it and not pushing myself to be what I was but accepting the me that I am creating, all play a part in this. I asked Dr. Cohen if I could start Physical Therapy again and she agreed. My first PT appointment was on Wednesday and I have two appointments per week scheduled for a number of weeks to follow.
Well, although I have a renewed energy after yoga tonight, I also have a long day ahead of me tomorrow, starting with another doctor appointment. I am seeing an opthamologist. One of the medications I take can cause a loss of vision so I need to have an eye exam every six months, I think. I haven't noticed any changes so I am not worried.
Have a wonderful day and remember....you do not have to be strong. God is there to hold you up if you need Him.
Good night.
Kris B
I have been pursuing "being strong" or getting stronger for years now and it's exhausting and frustrating, yet through it all, God continues to bless me, I am always driven by the sense that there is a greater purpose for me and my life than what I might have mapped out on my own.
This permission to not be strong gave me the willpower to go to the yoga class I had signed up for months ago but was now dreading. I didn't want to be the one person in the room that couldn't do it. I didn't want to be weak and certainly not in front of people I didn't know and who didn't know me. I didn't want to have to explain the reason behind my weakness, I wasn't going to go. I had permission this week to not be strong and I went. I am glad I did. The instructor (a friend of mine from Bunko) gave me some pointers before class. She was encouraging and positive and understanding and all the things I needed for trying something new. I loved it and am looking forward to next Thursday evening.
This week I saw Dr. Cohen. I think we are both comfortable with the fact that although the disease is still there, it is stable on medication. The meds, along with the balance I've achieved between work and home, eating foods that are much better for me, getting rest when I need it and not pushing myself to be what I was but accepting the me that I am creating, all play a part in this. I asked Dr. Cohen if I could start Physical Therapy again and she agreed. My first PT appointment was on Wednesday and I have two appointments per week scheduled for a number of weeks to follow.
Well, although I have a renewed energy after yoga tonight, I also have a long day ahead of me tomorrow, starting with another doctor appointment. I am seeing an opthamologist. One of the medications I take can cause a loss of vision so I need to have an eye exam every six months, I think. I haven't noticed any changes so I am not worried.
Have a wonderful day and remember....you do not have to be strong. God is there to hold you up if you need Him.
Good night.
Kris B
Monday, June 29, 2009
Looking ahead
Just re-read my last entry and decided I better get another one out here to let you know how I am doing.
We spent the weekend in Minneapolis with the Klehr family (my sister Sherry, husband Mike, kids, Sam and Maggie) and I have been feeling good. There have been many times over the past couple of years when I had to turn in early or skip on an outing because I didn't have the energy or was afraid of not having the energy. Not this time. We stayed up late, played pool, danced around the newly remodeled basement. We watched some of Sam's baseball tournament games, went to Emma's feis competition, walked the dogs and I even drove a couple hours on our way back home to Milwaukee.
How did I do? Pretty good. There are times when I still need help up when I am sitting on the ground and it takes awhile to get moving after riding in the car. I have aches and pains but they are no longer getting the best of me. For the most part, they are not stopping me.
The other things I did since my last entry:
I followed up with my food coach and she helped me navigate my most recent "detour". I guess that is the best way of describing those times when I get down on myself and allow that to get the best of me...it's a detour. I am still going to reach my destination. I feel comfortable with the food choices I am making and measuring my hunger scale (trying to not wait to eat until I am really hungry and eating only until I am satisfied), keeping the right foods in the house and talking through what I am feeling when I am going to eat something that provides nothing of value to my body.
The next stop on this journey is activity/exercise. I wrote down a single goal. I will exercise every day. This exercise may include walking, swimming, cycling, a DVD, or my physical therapy exercises. I have steps in place to ensure I am successful and I have asked Bill, Emma and Jake to hold me accountable. It may sound silly but I am giving myself a star sticker every time I exercise and I am going to reward myself with a new item of clothes or a manicure every 10 stickers until it becomes the healthy habit I desire.
The other thing I did was research our health insurance. I found a physical therapist that I want to work with and when I have my next appointment with Dr. Cohen (July 7th) I will ask her to write a referral for me to begin physical therapy again. I actually went ahead and made an appointment at Vita Fitness for physical therapy on July 8th. Dr. Cohen has been amazing to work with and I believe she will support this next step. My goal is to work with someone to incorporate weight bearing exercises into my daily life.
So, did I exercise today? I did not.
With that being said, I will head upstairs and do the exercises I received a couple of years ago from another therapist.
Thanks again for checking in. I am pretty sure there were a couple of prayers said for me after that entry and I wanted to let you know they worked.
We spent the weekend in Minneapolis with the Klehr family (my sister Sherry, husband Mike, kids, Sam and Maggie) and I have been feeling good. There have been many times over the past couple of years when I had to turn in early or skip on an outing because I didn't have the energy or was afraid of not having the energy. Not this time. We stayed up late, played pool, danced around the newly remodeled basement. We watched some of Sam's baseball tournament games, went to Emma's feis competition, walked the dogs and I even drove a couple hours on our way back home to Milwaukee.
How did I do? Pretty good. There are times when I still need help up when I am sitting on the ground and it takes awhile to get moving after riding in the car. I have aches and pains but they are no longer getting the best of me. For the most part, they are not stopping me.
The other things I did since my last entry:
I followed up with my food coach and she helped me navigate my most recent "detour". I guess that is the best way of describing those times when I get down on myself and allow that to get the best of me...it's a detour. I am still going to reach my destination. I feel comfortable with the food choices I am making and measuring my hunger scale (trying to not wait to eat until I am really hungry and eating only until I am satisfied), keeping the right foods in the house and talking through what I am feeling when I am going to eat something that provides nothing of value to my body.
The next stop on this journey is activity/exercise. I wrote down a single goal. I will exercise every day. This exercise may include walking, swimming, cycling, a DVD, or my physical therapy exercises. I have steps in place to ensure I am successful and I have asked Bill, Emma and Jake to hold me accountable. It may sound silly but I am giving myself a star sticker every time I exercise and I am going to reward myself with a new item of clothes or a manicure every 10 stickers until it becomes the healthy habit I desire.
The other thing I did was research our health insurance. I found a physical therapist that I want to work with and when I have my next appointment with Dr. Cohen (July 7th) I will ask her to write a referral for me to begin physical therapy again. I actually went ahead and made an appointment at Vita Fitness for physical therapy on July 8th. Dr. Cohen has been amazing to work with and I believe she will support this next step. My goal is to work with someone to incorporate weight bearing exercises into my daily life.
So, did I exercise today? I did not.
With that being said, I will head upstairs and do the exercises I received a couple of years ago from another therapist.
Thanks again for checking in. I am pretty sure there were a couple of prayers said for me after that entry and I wanted to let you know they worked.
Thursday, June 18, 2009
an update
Hello friends,
Sorry that it has been so long since I last posted anything to the blog. I prefer to write when I feel that I have something that needs to be said or maybe something inspiring. Sad to say, that day is not today either but I did need to let you know I was still out here, trying to make the most of each day.
This is the first week that the kids are out of school on summer vacation and I went from feel good to feeling OK and tonight I am very tired.
So far, the hardest thing about summer is that the clothes from last summer came out for the nice weather and they don't fit. I really , really am trying to stay positive. I am really, really trying to look at all the good that has come over the past year and all that I have learned and changed for the better and then I try and find something to wear and all the good quickly fades to something that feels very much like failure. I allow that feeling to be there. It's there for a reason and then I take a deep breath and appreciate that my legs took me for a walk today with my beautiful healthy children and sweet dog. My arms allowed me to hug my husband and I even put it all together and went swimming for 25 minutes tonight.
Deep breath...I am blessed.
Good night.
Kris
Sorry that it has been so long since I last posted anything to the blog. I prefer to write when I feel that I have something that needs to be said or maybe something inspiring. Sad to say, that day is not today either but I did need to let you know I was still out here, trying to make the most of each day.
This is the first week that the kids are out of school on summer vacation and I went from feel good to feeling OK and tonight I am very tired.
So far, the hardest thing about summer is that the clothes from last summer came out for the nice weather and they don't fit. I really , really am trying to stay positive. I am really, really trying to look at all the good that has come over the past year and all that I have learned and changed for the better and then I try and find something to wear and all the good quickly fades to something that feels very much like failure. I allow that feeling to be there. It's there for a reason and then I take a deep breath and appreciate that my legs took me for a walk today with my beautiful healthy children and sweet dog. My arms allowed me to hug my husband and I even put it all together and went swimming for 25 minutes tonight.
Deep breath...I am blessed.
Good night.
Kris
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