Here it is.
The link to my 2008 fundraising campaign for the Myositis Association. I hope it works.
I went to the WAC (Wisconsin Athletic Club) during the Packer game today and walked for 13 minutes on the treadmill. I didn't get very far (.75 miles) and I won't count it toward my 1044 miles because that doesn't start until January 1st but I thought it was a great way to start the week.
I am considering opening up the invitation to see if I can get other Myositis patients, caregivers or family to join in the walk, maybe meet me along the way. It's often more fun and encouraging to walk with a friend, don't you think?
Let me know if you are interested in the virtual walk to Denver.
Have a wonderful week.
Let me know if the link works.
TMA - My Campaign
klb
Sunday, December 30, 2007
Friday, December 28, 2007
Kris Bargers Journey of 1044 miles begins with one step...
Dear Family and Friends,
I will be sending out the following message via emails and USPS over the weekend. I just thought I would give you a sneak peak.
My’-o-si’-tis: a muscle disease believed to be autoimmune in nature causing inflammation and degeneration of muscle tissue.
One of the goals I have chosen for 2008 is to raise money and awareness for the Myositis Association. As many of you know, I was diagnosed with this rare muscle disease in June 2006. Prior to this diagnosis I enjoyed the challenge and thrill of triathalons. Somehow, exercise took on a whole new meaning for me when there was a finish line in front of me. Going to the gym, because it’s good for me…isn’t working so well. I need a new motivator.
On September 18th, 2008 the 15th annual Myositis Conference will take place in Denver, CO. I am not sure if I will be in attendance for that weekend event but I have decided that I will swim, bike, walk and run my way there between January 1st and September 18th via my membership at the Wisconsin Athletic Club and the beautiful streets and bike paths of Milwaukee (once the weather gets nice again).
It is 1044.1 miles from my home in Bayside, WI to Denver, CO.
No freaking out allowed.
No saying, "Kris you have a disease, you can’t or shouldn’t do this."
I can and I should (and the doctor will be watching me closely). I know this disease was part of God’s Master Plan for me. Right now, I know I have it to make others aware of it and to help those that have it find their reason too.
I will begin my journey on January 1st.
My goal is to raise at least $1044.10 (one dollar for every mile)
AAA is sending me my TripTix today. If you are interested in following the journey I will keep you posted through my blog at http://krislanebarger.blogspot.com.
Thank you in advance for your support and encouragement.
Sincerely,
Kris L Barger
I will be sending out the following message via emails and USPS over the weekend. I just thought I would give you a sneak peak.
My’-o-si’-tis: a muscle disease believed to be autoimmune in nature causing inflammation and degeneration of muscle tissue.
One of the goals I have chosen for 2008 is to raise money and awareness for the Myositis Association. As many of you know, I was diagnosed with this rare muscle disease in June 2006. Prior to this diagnosis I enjoyed the challenge and thrill of triathalons. Somehow, exercise took on a whole new meaning for me when there was a finish line in front of me. Going to the gym, because it’s good for me…isn’t working so well. I need a new motivator.
On September 18th, 2008 the 15th annual Myositis Conference will take place in Denver, CO. I am not sure if I will be in attendance for that weekend event but I have decided that I will swim, bike, walk and run my way there between January 1st and September 18th via my membership at the Wisconsin Athletic Club and the beautiful streets and bike paths of Milwaukee (once the weather gets nice again).
It is 1044.1 miles from my home in Bayside, WI to Denver, CO.
No freaking out allowed.
No saying, "Kris you have a disease, you can’t or shouldn’t do this."
I can and I should (and the doctor will be watching me closely). I know this disease was part of God’s Master Plan for me. Right now, I know I have it to make others aware of it and to help those that have it find their reason too.
I will begin my journey on January 1st.
My goal is to raise at least $1044.10 (one dollar for every mile)
AAA is sending me my TripTix today. If you are interested in following the journey I will keep you posted through my blog at http://krislanebarger.blogspot.com.
Thank you in advance for your support and encouragement.
Sincerely,
Kris L Barger
Thursday, December 20, 2007
Must be the holidays...
Hello friends and family,
It must be the holidays...
This week has been a little hard. On the way home from work the last two days I found myself exhausted. Really, not able to make one stop on the way home, not one errand. Just enough to get home, eat something, or too much of too many things, in hopes that it will give me enough energy to skip the nap and cross something else off the "to do" list. In the end it has ended with a nap so I should really identify that and skip the "eating too much" part as it is not giving me ANY of the results I desire.
By chance do any of you know anyone who enjoys playing with an excel spreadsheet?
I figured out a way that I can start to track "How I feel" based on some set criteria. I think a spreadsheet would probably be the best route to track this but for now it's on a word document and then a number on my planner.
Here’s the criteria:
1. Was I able to get out of bed by 6:00 AM – Yes is worth 2 points
6:15 AM – 1.75 points
6:30 AM – 1.50 points
6:45 AM – 1.25 points
7:00 AM – 1.00 point
After 7:00 – 0. Weekends probably need to be categorized differently.
2. Did I sleep a minimum of 7-8 hours last night – 2 point for yes, 0 for no
3. How many hours did I spend awake last night – subtract .25 for every 15 minutes of awake time
4. Did I do my Physical Therapy today – 1 for yes, 0 for no
5. Did I go to the WAC – 1 for yes, 0 for no
6. Did I need to rest in the afternoon – 0 for yes, 1 for no
7. a) Did I go to bed between 8-9:00 PM (with the kids) – 1 point
b) Did I go to bed between 9-10:00 PM – 2 points
c) Before the kids is - 0 points
8. Did I work today at least 4 hours – 1 point
10 points is a great day, 1 point is a day that I felt like crap.
In addition to documenting the above I would like another line to document the medications that I take related to myositis and the dates in which those doses changes.
Prednisone, Methotrexate and Azathioprine.
Thursday, December 20th
2
2
-.50
1
0
0
1
1
No changes to medications today. 40 mg of Prednisone (even date)/175 of Azathioprine
Total =6.50
So, if you know someone who might find joy in putting this into a spreadsheet for me, please let me know.
Here's a quote from the email I received from my Oprah Mission Calendar:
"What an enormous... magnifier is tradition! How a thing grows in the human memory, in the human imagination, when love, worship, and all that lies in the human heart, is there to encourage it." --Thomas Carlyle
A thought for you based on the quote above:
Hold the hand of someone you love this Christmas while you sing "Silent Night" The song reminds me first of Christmas at my Grandpa and Grandma Luebke's house, singing around the dining room table, the candles flickering on the walls and reflecting from the iced windows of the porch that shared the kitchen wall. Next it reminds me of the candle light service at Pilgrim and the faith that streamed in the form of a tear down the cheek of my dad, and most recently holding my mom's hand at the Lorie Line concert....no words, just the sharing of a hand, a faith, a love, an admiration....
Good night.
Kris B
It must be the holidays...
This week has been a little hard. On the way home from work the last two days I found myself exhausted. Really, not able to make one stop on the way home, not one errand. Just enough to get home, eat something, or too much of too many things, in hopes that it will give me enough energy to skip the nap and cross something else off the "to do" list. In the end it has ended with a nap so I should really identify that and skip the "eating too much" part as it is not giving me ANY of the results I desire.
By chance do any of you know anyone who enjoys playing with an excel spreadsheet?
I figured out a way that I can start to track "How I feel" based on some set criteria. I think a spreadsheet would probably be the best route to track this but for now it's on a word document and then a number on my planner.
Here’s the criteria:
1. Was I able to get out of bed by 6:00 AM – Yes is worth 2 points
6:15 AM – 1.75 points
6:30 AM – 1.50 points
6:45 AM – 1.25 points
7:00 AM – 1.00 point
After 7:00 – 0. Weekends probably need to be categorized differently.
2. Did I sleep a minimum of 7-8 hours last night – 2 point for yes, 0 for no
3. How many hours did I spend awake last night – subtract .25 for every 15 minutes of awake time
4. Did I do my Physical Therapy today – 1 for yes, 0 for no
5. Did I go to the WAC – 1 for yes, 0 for no
6. Did I need to rest in the afternoon – 0 for yes, 1 for no
7. a) Did I go to bed between 8-9:00 PM (with the kids) – 1 point
b) Did I go to bed between 9-10:00 PM – 2 points
c) Before the kids is - 0 points
8. Did I work today at least 4 hours – 1 point
10 points is a great day, 1 point is a day that I felt like crap.
In addition to documenting the above I would like another line to document the medications that I take related to myositis and the dates in which those doses changes.
Prednisone, Methotrexate and Azathioprine.
Thursday, December 20th
2
2
-.50
1
0
0
1
1
No changes to medications today. 40 mg of Prednisone (even date)/175 of Azathioprine
Total =6.50
So, if you know someone who might find joy in putting this into a spreadsheet for me, please let me know.
Here's a quote from the email I received from my Oprah Mission Calendar:
"What an enormous... magnifier is tradition! How a thing grows in the human memory, in the human imagination, when love, worship, and all that lies in the human heart, is there to encourage it." --Thomas Carlyle
A thought for you based on the quote above:
Hold the hand of someone you love this Christmas while you sing "Silent Night" The song reminds me first of Christmas at my Grandpa and Grandma Luebke's house, singing around the dining room table, the candles flickering on the walls and reflecting from the iced windows of the porch that shared the kitchen wall. Next it reminds me of the candle light service at Pilgrim and the faith that streamed in the form of a tear down the cheek of my dad, and most recently holding my mom's hand at the Lorie Line concert....no words, just the sharing of a hand, a faith, a love, an admiration....
Good night.
Kris B
Tuesday, December 11, 2007
Froedert Green Card
Today I had my appointment with the neurologist at Froedert Hospital. Unlike other previous visits I have had there today I had to go to the registration desk and they completed a profile on me with contact information, insurance stuff, etc... and then they gave me my own "green card" I was trying to think of all the things this might get me...
Frequent Flyer Miles
A free cup of coffee after six visits
$10 off when I spend $50.00 or more
the list could go on and on.
Today I had another EMG. This test is two fold. The first part is a measure of sensor and motor nerves, the second part is a measure of the muscle and any myopathy within the muscle. Bill brought me to this appointment and I invited him in to watch and ask questions. I learned a lot more having him there. I was more comfortable asking questions with him there and I was less intimidated by the screen knowing that what the doctor was seeing and explaining was being heard with a second set of ears.
The tests were pretty good. Actually, some better than the ones I had done the last time. The goal continues to be one that frees me taking two forms of chemotherapy and the steroids. I have to remind myself that the doctor hoped to get me there within a two year timeline and I am only a year and a half in.
Patience
Patience
Patience
Shaking hands, unexplainable, uncontrollable and terribly untimely sweating continue to bother me. I asked the doctor about it today and he feels that it is very likely the effects of the medication, not the disease.
I am not certain that splitting the dose of Methotrexate into two made too much of a difference but I might have more energy/less fatigue yesterday and today then I have had in the past on a Monday or Tuesday. I have not figured out a way to document this. If anyone has any ideas I am open to suggestions.
I definitely felt better on Sunday even though I spent six hours in the car traveling home from a wonderful weekend in Minneapolis.
Just a quick note:
After the first of the year I will begin distributing "Youth Juice". I will send more information as I get it together but if you want to check out another website to get a sneak peek you can go to
http://ourworldnetwork.com/kbarger
If you would like to try a bottle without buying a case let me know. I have a couple of cases at home now for my own consumption. It's spendy but when you are looking for something to make you feel better I found it to be worth it. It's $45/bottle.
Like a really fine bottle of wine, right?
I don't have a quote for today, just a word.... BELIEVE.
klb
Frequent Flyer Miles
A free cup of coffee after six visits
$10 off when I spend $50.00 or more
the list could go on and on.
Today I had another EMG. This test is two fold. The first part is a measure of sensor and motor nerves, the second part is a measure of the muscle and any myopathy within the muscle. Bill brought me to this appointment and I invited him in to watch and ask questions. I learned a lot more having him there. I was more comfortable asking questions with him there and I was less intimidated by the screen knowing that what the doctor was seeing and explaining was being heard with a second set of ears.
The tests were pretty good. Actually, some better than the ones I had done the last time. The goal continues to be one that frees me taking two forms of chemotherapy and the steroids. I have to remind myself that the doctor hoped to get me there within a two year timeline and I am only a year and a half in.
Patience
Patience
Patience
Shaking hands, unexplainable, uncontrollable and terribly untimely sweating continue to bother me. I asked the doctor about it today and he feels that it is very likely the effects of the medication, not the disease.
I am not certain that splitting the dose of Methotrexate into two made too much of a difference but I might have more energy/less fatigue yesterday and today then I have had in the past on a Monday or Tuesday. I have not figured out a way to document this. If anyone has any ideas I am open to suggestions.
I definitely felt better on Sunday even though I spent six hours in the car traveling home from a wonderful weekend in Minneapolis.
Just a quick note:
After the first of the year I will begin distributing "Youth Juice". I will send more information as I get it together but if you want to check out another website to get a sneak peek you can go to
http://ourworldnetwork.com/kbarger
If you would like to try a bottle without buying a case let me know. I have a couple of cases at home now for my own consumption. It's spendy but when you are looking for something to make you feel better I found it to be worth it. It's $45/bottle.
Like a really fine bottle of wine, right?
I don't have a quote for today, just a word.... BELIEVE.
klb
Wednesday, December 5, 2007
Ups and Downs
It's been a bit of a roller coaster the past few days. Sometimes Bill tells me he thinks I would feel better if I just let myself get angry. Well, Sunday was that day...
I do not feel well on Sundays. I believe it's the Methotrexate shot I give myself on Saturdays but I get a terrible headache during the night that continues the next day and I am exhausted, just worn out.
This Sunday, after church, while the kids were in Sunday School Bill drove me home so I could rest. This is when the grumbling started.
I was angry that I could not enjoy a glass of wine or a cocktail with friends the evening before at our annual (but small) Barger Christmas Party.
I was angry that on one of the two days that we can spend together as a family I would be spending it alone in bed.
I was angry that I don't remember what it feels like to feel really good and not just OK.
I was angry that when someone asked me "how are you doing?" I feel like the only response is I'm OK.
At one point, I yelled out the bedroom..."and I am angry that being angry doesn't make me feel any better."
So, that was angry. None of which was displayed in front of Jake or Emma. I continue to remind myself that my children learn more from my actions than my words.
Yesterday I had a doctor appointment. The labs look good. Again, the frustration in this is that good means unchanged, not "better" or "healed" or "not sick anymore"
The doctor suggested a new approach to the methotrexate to try and offset the way I feel on Sundays. Instead of giving myself the full dose on Saturday night, I will give myself a half a dose on Saturday night and the other half on Sunday morning. It's worth a try. Now that I am no longer freaked out about giving myself an injection one poke or two, just doesn't matter.
It's also time to start tapering the prednisone again and see how I do. We have a schedule in place that should have me down from 40 to 10 mg in the next eight weeks. It's a slow process because of the effects it can have on my adrenal glands but slow and steady is better than no change at all.
The next medical update will come next week after my appointment with the neurologist. I have to have another one of those EMG tests done. They are scheduled about every four to six months and there is really nothing about this test that I enjoy. I actually think they get worse each time only because I know what to expect now. Bill's coming with me. I am hoping that he will have some really good questions or insights for the doctor. By the time the test is over I am just so relieved that my mind goes blank and I can't think of anything to ask and I don't retain the information that is shared. He's my wingman.
I have a great quote to share with you that I got from my friend Chris Murphy. It's the motto her parents (John and Cindy) wrote and live by....
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other,body thoroughly used up, totally worn out and screaming "WOO HOO,what a ride"
Have a great day.
Kris B
I do not feel well on Sundays. I believe it's the Methotrexate shot I give myself on Saturdays but I get a terrible headache during the night that continues the next day and I am exhausted, just worn out.
This Sunday, after church, while the kids were in Sunday School Bill drove me home so I could rest. This is when the grumbling started.
I was angry that I could not enjoy a glass of wine or a cocktail with friends the evening before at our annual (but small) Barger Christmas Party.
I was angry that on one of the two days that we can spend together as a family I would be spending it alone in bed.
I was angry that I don't remember what it feels like to feel really good and not just OK.
I was angry that when someone asked me "how are you doing?" I feel like the only response is I'm OK.
At one point, I yelled out the bedroom..."and I am angry that being angry doesn't make me feel any better."
So, that was angry. None of which was displayed in front of Jake or Emma. I continue to remind myself that my children learn more from my actions than my words.
Yesterday I had a doctor appointment. The labs look good. Again, the frustration in this is that good means unchanged, not "better" or "healed" or "not sick anymore"
The doctor suggested a new approach to the methotrexate to try and offset the way I feel on Sundays. Instead of giving myself the full dose on Saturday night, I will give myself a half a dose on Saturday night and the other half on Sunday morning. It's worth a try. Now that I am no longer freaked out about giving myself an injection one poke or two, just doesn't matter.
It's also time to start tapering the prednisone again and see how I do. We have a schedule in place that should have me down from 40 to 10 mg in the next eight weeks. It's a slow process because of the effects it can have on my adrenal glands but slow and steady is better than no change at all.
The next medical update will come next week after my appointment with the neurologist. I have to have another one of those EMG tests done. They are scheduled about every four to six months and there is really nothing about this test that I enjoy. I actually think they get worse each time only because I know what to expect now. Bill's coming with me. I am hoping that he will have some really good questions or insights for the doctor. By the time the test is over I am just so relieved that my mind goes blank and I can't think of anything to ask and I don't retain the information that is shared. He's my wingman.
I have a great quote to share with you that I got from my friend Chris Murphy. It's the motto her parents (John and Cindy) wrote and live by....
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other,body thoroughly used up, totally worn out and screaming "WOO HOO,what a ride"
Have a great day.
Kris B
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