Here is the email I referenced in my last blog entry.
Isn't it wonderful to see the positive things going on to improve the well being of ourselves and others.
In August 2000, the waiting list for Sunrise Village, a homeless shelter here in Fremont, totaled 50 families. Because of that, the "Winter Relief" program was born, providing emergency winter shelter for the families in January 2001.
The waiting list has continued to grow each year, and now five area churches have continued to help meet the needs of these families by providing food, sleeping sites, transportation, programs for the kids, and more.
To continue assistance to the families in need, on April 26, 2008, St. James’ Episcopal Church in Fremont is joining with St. Anne's to hold our annual Walka-Rocka-thon to benefit the Winter Relief program.
This year, we’re in for a 7-mile trek across Fremont, while others will spend time "rocking" in chairs, all with the goal of raising funds for the program.
This effort directly raises money to purchase items such as bus tickets, toiletries, and grocery & department store gift cards for the families. No middle-men!
Can you help? I’ll be walking bright and early, and any donation is appreciated. And if you're unable to donate, even simple words of support are treasured, and we all thank you for your good wishes. (This is the ultimate soft-sell, no obligation message!)
Thank you again for considering, from the Walkers and the Rockers and those who benefit :)
Meg Williams
3621 Kay Ct.
Fremont, CA 94538
========================
If you are able to assist financially, you may email me and send your donation later, or simply mail it to
me: checks may be made out to St. James Episcopal Church, with "Winter Relief" in the memo line. My address (for mailing) is above, if needed.
Your cancelled check can be used for tax purposes, and a tax ID number can be provided if necessary. If you need more information on the program, be sure to let me know.
Wednesday, April 30, 2008
Denver, alone....
Denver, alone...now that doesn't sound like much fun. Don't you think we should see how many people we can get there. Bill should be able to come along for sure, right? What if we could log enough miles for all contributors to go along? I am going to be starting to add the miles of my marathoning coworker and I might get a few more runners on board so it is possible. ANYTHING IS POSSIBLE.
I put this out there because not only are we adding the following people to my list of walkers, runners and bikers
WELCOME:
Auntie Susie
Laurie and Scott Thompson
Beth Weseman
My Mom
My Dad
Sandra Gonzalez
and the 21 people that walked with Meg Williams in the Walk-Rock-athon this past week-end.
(The next blog entry will be the email I received from Meg regarding this event. When you see something wonderful going on to better the lives of our neighbors it should be shared, right?)
OK, OK, back to where I was about to make a big announcement.
Not only are we adding the above people BUT as of today we are at 1345.07 miles logged. I got to Denver.
THANK YOU !!!!!!!
Don't stop walking, don't stop reporting your miles to me. YOU INSPIRE ME. On days that I am feeling good, you inspire me to get outside and walk. On days that I am not feeling so good I think of crazy goals related to this FUNDRAISING AND AWARENESS.
Starting today, I am going to try and match every mile walked with a dollar toward Myositis Research. That means I am going to have to sell ALOT of tshirts and raise ALOT of awareness and I am counting on you for that too.
When you receive your tshirt you will also receive a flyer that tells you what to say if someone asks "What's MYOSITIS"
If someone receives the email regarding my campaign and says "so how can I help"
The goal is raising awareness and money for research (buying and wearing a tshirt does both). If you happen to have a job or networking circle that offers sponsorships and things of that nature....money and exposure is a good thing too.
Thank you again for all your support and encouragement and MILES.
The M in Myositis stands for "Make every moment count."
klb
I put this out there because not only are we adding the following people to my list of walkers, runners and bikers
WELCOME:
Auntie Susie
Laurie and Scott Thompson
Beth Weseman
My Mom
My Dad
Sandra Gonzalez
and the 21 people that walked with Meg Williams in the Walk-Rock-athon this past week-end.
(The next blog entry will be the email I received from Meg regarding this event. When you see something wonderful going on to better the lives of our neighbors it should be shared, right?)
OK, OK, back to where I was about to make a big announcement.
Not only are we adding the above people BUT as of today we are at 1345.07 miles logged. I got to Denver.
THANK YOU !!!!!!!
Don't stop walking, don't stop reporting your miles to me. YOU INSPIRE ME. On days that I am feeling good, you inspire me to get outside and walk. On days that I am not feeling so good I think of crazy goals related to this FUNDRAISING AND AWARENESS.
Starting today, I am going to try and match every mile walked with a dollar toward Myositis Research. That means I am going to have to sell ALOT of tshirts and raise ALOT of awareness and I am counting on you for that too.
When you receive your tshirt you will also receive a flyer that tells you what to say if someone asks "What's MYOSITIS"
If someone receives the email regarding my campaign and says "so how can I help"
The goal is raising awareness and money for research (buying and wearing a tshirt does both). If you happen to have a job or networking circle that offers sponsorships and things of that nature....money and exposure is a good thing too.
Thank you again for all your support and encouragement and MILES.
The M in Myositis stands for "Make every moment count."
klb
Monday, April 28, 2008
PT update
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
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
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
a couple updates...
On Tuesday, April 1st I was inspired by it being the first day of a brand new month, the sun was shining and the daylight hours are longer....I walked to the voting location after dinner (about a mile). It felt great. Granted I had to slow down my pace a couple of times and I was freezing cold by the time I got home but all was good.
Yesterday, about 4:00 PM my legs started to ache. During dinner I had a hard time being comfortable, by 7:00 I was laying in bed. I took the medication that I have on hand for this type of thing and then was awake most of the night. Thankfully by 10 PM or so my legs didn't hurt anymore but the medicine wired me up. I finished a book and started another one and before I knew it the alarm clock was going off announcing to me a brand new day.
Today, my legs don't hurt at all.
My appointment with Dr. Cohen went well. We are starting down a new path today. No more Methotrexate and no more Imuran but still 20 mgs of prednisone with a plan to taper over the next 12 weeks down to 5 mg every other day. In a week, once the two immunosuppressive drugs are out of my blood (it takes much longer for it to leave the muscle) I will start on a new drug called Cellcept. It will take a number of weeks for me to work my way up to a full strength dose and possibly a couple of months for me to see and feel it's effectiveness but I am thrilled to be trying something new and the thought of no more needles on the weekends is THRILLING.
I did have a chest xray done as well as routine lab work and will let you know if there is anything worth reporting once I get the results back.
Thanks for checking in.
klb
Yesterday, about 4:00 PM my legs started to ache. During dinner I had a hard time being comfortable, by 7:00 I was laying in bed. I took the medication that I have on hand for this type of thing and then was awake most of the night. Thankfully by 10 PM or so my legs didn't hurt anymore but the medicine wired me up. I finished a book and started another one and before I knew it the alarm clock was going off announcing to me a brand new day.
Today, my legs don't hurt at all.
My appointment with Dr. Cohen went well. We are starting down a new path today. No more Methotrexate and no more Imuran but still 20 mgs of prednisone with a plan to taper over the next 12 weeks down to 5 mg every other day. In a week, once the two immunosuppressive drugs are out of my blood (it takes much longer for it to leave the muscle) I will start on a new drug called Cellcept. It will take a number of weeks for me to work my way up to a full strength dose and possibly a couple of months for me to see and feel it's effectiveness but I am thrilled to be trying something new and the thought of no more needles on the weekends is THRILLING.
I did have a chest xray done as well as routine lab work and will let you know if there is anything worth reporting once I get the results back.
Thanks for checking in.
klb
Tuesday, April 1, 2008
We're back
We're back from a beautiful vacation in Arizona. While I was gone a number of people reported in their miles. We are adding 57 miles to our journey to Denver. OUTSTANDING. One morning in Arizona Emma joined Grandma Luebke for 1.5 mile walk and they were lucky enough to cross paths with a desert coyote. A memory both of them will cherish I am sure.
A quick health update....
I was a little concerned about heat and sun exposure and how that might effect me. Turns out it didn't effect me at all except to brighten my spirits and take a bit of the pastey white skin away.
Sunshine, everyday.....wow. It was awesome.
On Thursday I have a follow up appointment to see Dr. Cohen. I am still taking 20mg of prednisone and will look to begin the tapering process again with this next visit. It really does make me feel better, though I can not stand the side effects (cravings that are very difficult to get under control and the weight control issues that go with it). I'm sticking with Weight Watchers and although the pounds aren't flying off, thankfully they aren't flying on either.
A update on the tshirt fund raiser....
I am working with my sister-in-law, Meg on the tshirt design and hope to have things finalized by the end of April. At that time I will distribute order forms. Rather than order a large supply upfront and take the chance of having an overflow of inventory, I am going to order what people want. More to follow on that....
Thanks again for checking in.
klb
Quote for the day:
"Happiness depends.../ Less on exterior things than most suppose." -- William Cowper
A quick health update....
I was a little concerned about heat and sun exposure and how that might effect me. Turns out it didn't effect me at all except to brighten my spirits and take a bit of the pastey white skin away.
Sunshine, everyday.....wow. It was awesome.
On Thursday I have a follow up appointment to see Dr. Cohen. I am still taking 20mg of prednisone and will look to begin the tapering process again with this next visit. It really does make me feel better, though I can not stand the side effects (cravings that are very difficult to get under control and the weight control issues that go with it). I'm sticking with Weight Watchers and although the pounds aren't flying off, thankfully they aren't flying on either.
A update on the tshirt fund raiser....
I am working with my sister-in-law, Meg on the tshirt design and hope to have things finalized by the end of April. At that time I will distribute order forms. Rather than order a large supply upfront and take the chance of having an overflow of inventory, I am going to order what people want. More to follow on that....
Thanks again for checking in.
klb
Quote for the day:
"Happiness depends.../ Less on exterior things than most suppose." -- William Cowper
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