Hello,
I just thought I would let you know that my second PT appointment was this afternoon. I'm weirded out because I feel great. Really, really good. I feel energized and happy and unstoppable and calm. I called Bill right away to share the news and then proceeded to tell him I was wondering what happened in there.
Honestly I spent an hour breathing, thinking, eyes closed, relaxed, the PT was busy doing the muscle stuff for me (arms, legs, head, neck, back, etc...) and when I left I didn't feel exhausted or sore or frustrated.
Bill quickly reminded me how wonderful it is that I have an open mind to an alternative/complimentary approach and to just enjoy the ride and not ruin it by thinking it about it too much.
Well, I just had to tell you I went from not feeling very good today to feeling great and I am going to keep practicing my breathing to see how long I can make this ride last.
I fell away from the quote's for awhile. Today I will share the last line of my myositis t-shirt.
Sovereignty = God is in control of everything.
klb
Monday, April 28, 2008
Friday, April 25, 2008
a weeks worth of updates...
Hello and thanks for checking in. I am sorry that I haven't posted for so long, no excuses...so let's get to it.
I am on the new medication now. I have noticed no improvements, yet. We must be reminded that it is a gradual process, I am not up to a full dose yet, and it could be many weeks before the effects present themselves.
I met with a new physical therapist. It is a new approach to treatment but my mind is open to what it has to offer. The first meeting she taught me the importance of breathing, diaphragmatic breathing. Here is a little snip it from a handout she gave me regarding this:
"For a moment, think of the word "stress" as any stimulus that engages us in life such as eating, bathing, working and socializing. When we perceive a situation or thought as threatening in any way, it can become dis-stressing, In these moments or over time, our breath can adapt to cope with the distress. We often adopt a "survival" breathing pattern, where we use little of our diaphragm muscle and mostly upper chest, shoulder and neck muscles. This pattern will continue to limit the movement of the primary breathing muscle, the diaphragm and create tightness and exhaustion in the muscles in our upper body. Over time this will limit our oxygen intake, create excess muscular tension and compromise our immune system."
I have physical therapy scheduled twice a week over the next six weeks. I will keep you posted on the outcome of this new approach.
Last week I had a great meeting with my boss. Near the end of the meeting I was telling her that we were coming up on the two year mark of my diagnosis and how I continue to try and figure out what my "new normal" will be and she helped me tremendously by asking me to take the same approach with my health that I take in my work. In my work, I don't try and figure it all out before I get started, I just start. I tweak and adjust along the way but keep moving forward. She suggested I try that with my life outside of work. Stop trying to figure out the disease. Just live and tweak and adjust along the way but keep moving forward. I'm taking her advise.
Many of you probably received my email regarding my myositis t-shirt campaign. I kicked that off last night by sending an email to virtually everyone in my email distribution with the hope that it will be forwarded around the world and people will be wearing myositis shirts and raising awareness. Thank you in advance for your help with this effort. I am also looking forward to sharing this campaign with the congregation at Our Savior in Whitefish Bay, my coworkers at PyraMax Bank and my Saturday morning weight watchers group. These presentations will be in person so wish me luck on that.
What else did I want to tell you....
I am reading "A New Earth" by Ekhardt Tolle. It's very heavy reading. I struggled in the beginning to keep reading but as I get nearer to the end I am having a hard time putting it down. It's about living in the "Now". It's about being present and not letting the past or the future rob you of this moment. Just yesterday I read the powerful word's "this too shall pass" and although I always used that as comfort in a bad situation the reality is it belongs to every moment, even the good ones. Take each moment, learn from it and move with courage and confidence into the next moment. The book encourages it's readers to say the words "I am."
Did you notice there is not a blank to be filled in? Not, I am a mom. Not, I am a wife or a daughter or a sister or a manager or anything else....just "I am" You can't go wrong.
I am obviously not the author. I would however encourage you to read the book regardless of what I just said in the above paragraph. Somethings just can't be explained.
Today, I did not go to work. I struggle with that. I love what I do. I enjoy being there and I feel as though I am making a contribution. When I can't go, I feel defeated. I feel like I am letting the disease get the best of me. Now, if I take the advise of my boss and keep moving forward it's OK that I need today to rest. If I take the words of the book, this is just a moment...a moment to be lived, enjoyed and appreciated, "this too shall pass".
I am going to sign off now. I should rest and practice my diaphragmatic breathing.
Have a wonderful day.
Kris B
I am on the new medication now. I have noticed no improvements, yet. We must be reminded that it is a gradual process, I am not up to a full dose yet, and it could be many weeks before the effects present themselves.
I met with a new physical therapist. It is a new approach to treatment but my mind is open to what it has to offer. The first meeting she taught me the importance of breathing, diaphragmatic breathing. Here is a little snip it from a handout she gave me regarding this:
"For a moment, think of the word "stress" as any stimulus that engages us in life such as eating, bathing, working and socializing. When we perceive a situation or thought as threatening in any way, it can become dis-stressing, In these moments or over time, our breath can adapt to cope with the distress. We often adopt a "survival" breathing pattern, where we use little of our diaphragm muscle and mostly upper chest, shoulder and neck muscles. This pattern will continue to limit the movement of the primary breathing muscle, the diaphragm and create tightness and exhaustion in the muscles in our upper body. Over time this will limit our oxygen intake, create excess muscular tension and compromise our immune system."
I have physical therapy scheduled twice a week over the next six weeks. I will keep you posted on the outcome of this new approach.
Last week I had a great meeting with my boss. Near the end of the meeting I was telling her that we were coming up on the two year mark of my diagnosis and how I continue to try and figure out what my "new normal" will be and she helped me tremendously by asking me to take the same approach with my health that I take in my work. In my work, I don't try and figure it all out before I get started, I just start. I tweak and adjust along the way but keep moving forward. She suggested I try that with my life outside of work. Stop trying to figure out the disease. Just live and tweak and adjust along the way but keep moving forward. I'm taking her advise.
Many of you probably received my email regarding my myositis t-shirt campaign. I kicked that off last night by sending an email to virtually everyone in my email distribution with the hope that it will be forwarded around the world and people will be wearing myositis shirts and raising awareness. Thank you in advance for your help with this effort. I am also looking forward to sharing this campaign with the congregation at Our Savior in Whitefish Bay, my coworkers at PyraMax Bank and my Saturday morning weight watchers group. These presentations will be in person so wish me luck on that.
What else did I want to tell you....
I am reading "A New Earth" by Ekhardt Tolle. It's very heavy reading. I struggled in the beginning to keep reading but as I get nearer to the end I am having a hard time putting it down. It's about living in the "Now". It's about being present and not letting the past or the future rob you of this moment. Just yesterday I read the powerful word's "this too shall pass" and although I always used that as comfort in a bad situation the reality is it belongs to every moment, even the good ones. Take each moment, learn from it and move with courage and confidence into the next moment. The book encourages it's readers to say the words "I am."
Did you notice there is not a blank to be filled in? Not, I am a mom. Not, I am a wife or a daughter or a sister or a manager or anything else....just "I am" You can't go wrong.
I am obviously not the author. I would however encourage you to read the book regardless of what I just said in the above paragraph. Somethings just can't be explained.
Today, I did not go to work. I struggle with that. I love what I do. I enjoy being there and I feel as though I am making a contribution. When I can't go, I feel defeated. I feel like I am letting the disease get the best of me. Now, if I take the advise of my boss and keep moving forward it's OK that I need today to rest. If I take the words of the book, this is just a moment...a moment to be lived, enjoyed and appreciated, "this too shall pass".
I am going to sign off now. I should rest and practice my diaphragmatic breathing.
Have a wonderful day.
Kris B
Tuesday, April 15, 2008
Just when everything was going well...
Just when I was feeling really good I get slammed. I was sitting at work today and I felt a tightening in my neck and then my shoulders and then it actually felt like it was taken conscious effort to keep my head up on my shoulders. This may be a slight exageration but honestly, not a half hour before this happened I was telling a co worker how much better I had been feeling since dropping the "chemo" drugs and starting this new one.
I didn't let it progress too far before I decided to leave work to rest. So what am I doing now....going to rest, going to feel better.
I'll keep you posted.
klb
I didn't let it progress too far before I decided to leave work to rest. So what am I doing now....going to rest, going to feel better.
I'll keep you posted.
klb
Monday, April 14, 2008
921.95
921.95 - That's the number of miles we have covered together as of today.
This is amazing. It's only April 14th. I am starting to think that we are going to have enough time and enough team members committed to this journey to get us back to Bayside once we reach our Destination Denver.
A special thanks to the following people who have reported numbers in to this cross country journey:
Uncle Dave Luebke
Pat Barger
Meg Williams
Vicki Luebke
Janet Garcia
Emma Barger
Bill Barger
Jake Barger
Beth Siebert
Steve Siebert
Pat Murphy
Chris Murphy
Kyle Murphy
Aly Murphy
Nate Spaeth
Angie Spaeth
Erik Halling
Others are walking and keeping track of their miles for me but I don't have them on my spreadsheet yet (my parents, a few cousins, some people at work....). Do you think we can grow this list of 17 to 50? I do.
Tell a friend. By including others in this journey you are helping me raise awareness for Myositis. You can add miles to the blog in the comment area or you can email them to me and I will add them to my spreadsheet. My email address is wbarger@wi.rr.com . Thank you, thank you.
klb
This is amazing. It's only April 14th. I am starting to think that we are going to have enough time and enough team members committed to this journey to get us back to Bayside once we reach our Destination Denver.
A special thanks to the following people who have reported numbers in to this cross country journey:
Uncle Dave Luebke
Pat Barger
Meg Williams
Vicki Luebke
Janet Garcia
Emma Barger
Bill Barger
Jake Barger
Beth Siebert
Steve Siebert
Pat Murphy
Chris Murphy
Kyle Murphy
Aly Murphy
Nate Spaeth
Angie Spaeth
Erik Halling
Others are walking and keeping track of their miles for me but I don't have them on my spreadsheet yet (my parents, a few cousins, some people at work....). Do you think we can grow this list of 17 to 50? I do.
Tell a friend. By including others in this journey you are helping me raise awareness for Myositis. You can add miles to the blog in the comment area or you can email them to me and I will add them to my spreadsheet. My email address is wbarger@wi.rr.com . Thank you, thank you.
klb
It's all good....
It's all good....
I have not taken a chemotherapy drug (azathioprine or methotrexate) since April 3rd and started the new cellcept drug just four days ago. There is something to be said about being free of those drugs that carry with them something negative. They have scary names and they are used to treat very sick people and not taking them actually makes me feel better, physically and mentally.
By the end of this week I will be posting information on my fund raising/awareness campaign for Myositis. I will use my blog to provide updates on the campaign efforts and email to send out the order forms and pledge documents. I am counting on all of you to help get the word out. You have been a tremendous support for me.
Thank you.
Here's a lovely quote from Oprah's Mission Calendar email I receive...
"Lavish [love] on others, receive it gratefully when it come to you. Cultivate friendship like a garden. It is the best love of all." -- Sister Helen Prejean
I have not taken a chemotherapy drug (azathioprine or methotrexate) since April 3rd and started the new cellcept drug just four days ago. There is something to be said about being free of those drugs that carry with them something negative. They have scary names and they are used to treat very sick people and not taking them actually makes me feel better, physically and mentally.
By the end of this week I will be posting information on my fund raising/awareness campaign for Myositis. I will use my blog to provide updates on the campaign efforts and email to send out the order forms and pledge documents. I am counting on all of you to help get the word out. You have been a tremendous support for me.
Thank you.
Here's a lovely quote from Oprah's Mission Calendar email I receive...
"Lavish [love] on others, receive it gratefully when it come to you. Cultivate friendship like a garden. It is the best love of all." -- Sister Helen Prejean
Thursday, April 10, 2008
Thumbs up...
I received a call from Dr. Cohen today. Thumbs up, the lab numbers look good and so did the xray. Tonight I take my first dose of Cellcept.
Last night Jake and I walked a mile. He zoomed on his big wheel and I screamed how many driveways he could be ahead of me before he had to stop and wait for me to catch up. He was a good listener but those big wheels are loud and fast.
We have a big addition to our miles to Denver, the Murphy family has added 183 miles and from what I heard, many of those came from the beautiful beaches in Florida as well as their daughter Aly's diligence in wearing her pedometer. Way to go Aly. Thank you, thank you.
I have to bump over to my miles tracker and I will log back in later with an update of how far we have left to go.
Two walkers and a marathon runner asked if they could add their miles to the journey. Of course I said yes but I am going to keep the marathon numbers under cover until we get closer to our destination. I don't want anyone losing motivation thinking that the runner will carry us.
Thanks for hanging in there with me.
We are coming up on the two year mark and I was really hoping to have kicked this disease into remission by now. Please say a prayer with me that cellcept is the answer.
klb
Last night Jake and I walked a mile. He zoomed on his big wheel and I screamed how many driveways he could be ahead of me before he had to stop and wait for me to catch up. He was a good listener but those big wheels are loud and fast.
We have a big addition to our miles to Denver, the Murphy family has added 183 miles and from what I heard, many of those came from the beautiful beaches in Florida as well as their daughter Aly's diligence in wearing her pedometer. Way to go Aly. Thank you, thank you.
I have to bump over to my miles tracker and I will log back in later with an update of how far we have left to go.
Two walkers and a marathon runner asked if they could add their miles to the journey. Of course I said yes but I am going to keep the marathon numbers under cover until we get closer to our destination. I don't want anyone losing motivation thinking that the runner will carry us.
Thanks for hanging in there with me.
We are coming up on the two year mark and I was really hoping to have kicked this disease into remission by now. Please say a prayer with me that cellcept is the answer.
klb
Thursday, April 3, 2008
710.45 miles to go
I just added up our miles and we are doing great. If we average just over 4 miles a day as a team we will get there by the beginning of the Annual Conference and I happen to know that there are people holding on to their numbers and reporting them in monthly so I imagine this will change dramatically once those numbers are included.
Keep those shoes laced up, warm and walking.
Thank you.
Kris Lane
Keep those shoes laced up, warm and walking.
Thank you.
Kris Lane
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