The pies looked so good at the Log Cabin Restaurant today I couldn't decide so a call to Bill confirmed that I should buy 2, one blueberry, one pecan.
Our first in-person KIT meeting was great. It was so nice to put a name with a face and meet these wonderful people. Baraboo was a great place to meet. It was a perfect day for a drive and because I chose to "fly solo" I blasted the radio with my favorite CD's.
First Shania Twain "Come on Over" ...so many songs written for me to sing to Bill and sing I did.
Second was the compilation CD from my sister, Beth's wedding....great fun.
Third was Paul Simon's Rhythm of the Saints...wonderful drums and a great rhythms...
Kid Rock, David Gray, Talking Heads were played on the way home.
What a great day!
Saturday, May 29, 2010
Friday, May 28, 2010
A little nervous...
Tomorrow I hopping in the car and heading to Baraboo, WI to meet up with a group of individuals from around the state who share with me a myositis diagnosis. I'm a little nervous. It has taken years for me to get comfortable with this. It's a process.
I remember when I was first diagnosed I went out to the internet and found the myositis website. There is an on-line support group/message board where you can ask questions, tell stories, share your struggles, etc...I visited. I asked questions. I decided it wasn't for me. I wasn't going to let the experiences of others be mine. I was going to take this as it came and process it and deal with it my way.
Time passed and I realized that although I never felt alone, it's definitely hard to explain muscle fatigue to someone who doesn't have a muscle disease. It's hard to process and talk about what I could do and what I can't do anymore without sounding like I'm complaining. It's hard to know how to respond when someone asks "how are you doing? or how are you feeling?" How much do they want to know or should I just say...I'm doing great. It's hard to accept that medication will be how I start and end each day, probably for the rest of my life. This is something that I expect this group of people will understand only too well.
What I am really hoping for is that they have found the blessings of each day intertwined with the challenges we all face. I hope it will be a positive experience for all of us. If nothing else, The Log Cabin restaurant in Baraboo says they have great pie and I have a couple of picnics to go to this weekend so I'll be bringing a few home. Bill loves pie!
Have a safe, fun memorial day week-end. Take a moment to thank a soldier.
I remember when I was first diagnosed I went out to the internet and found the myositis website. There is an on-line support group/message board where you can ask questions, tell stories, share your struggles, etc...I visited. I asked questions. I decided it wasn't for me. I wasn't going to let the experiences of others be mine. I was going to take this as it came and process it and deal with it my way.
Time passed and I realized that although I never felt alone, it's definitely hard to explain muscle fatigue to someone who doesn't have a muscle disease. It's hard to process and talk about what I could do and what I can't do anymore without sounding like I'm complaining. It's hard to know how to respond when someone asks "how are you doing? or how are you feeling?" How much do they want to know or should I just say...I'm doing great. It's hard to accept that medication will be how I start and end each day, probably for the rest of my life. This is something that I expect this group of people will understand only too well.
What I am really hoping for is that they have found the blessings of each day intertwined with the challenges we all face. I hope it will be a positive experience for all of us. If nothing else, The Log Cabin restaurant in Baraboo says they have great pie and I have a couple of picnics to go to this weekend so I'll be bringing a few home. Bill loves pie!
Have a safe, fun memorial day week-end. Take a moment to thank a soldier.
Thursday, May 27, 2010
What a compliment...
Just wanted to share with you a new blogger address. My sister Beth started a blog to journey/journal her efforts to prepare for a summer triathlon. She loves to take pictures and hopes to photograph her way through this.
I hope she finds as much joy and strength and courage and faith as I do through writing.
We all have something to give and it is through the act of giving we receive our own greatest gifts...my cup overflows!
http://roo-trytotri.blogspot.com
I hope she finds as much joy and strength and courage and faith as I do through writing.
We all have something to give and it is through the act of giving we receive our own greatest gifts...my cup overflows!
http://roo-trytotri.blogspot.com
Monday, May 24, 2010
Be thankful...continued
"Be thankful when you are tired and weary, because it means you've made a difference.
It's easy to be thankful for the good things. A life of rich fulfillment comes to those who are also thankful for the setbacks. Gratitude can turn a negative into a positive. Find a way to be thankful for your troubles, and they can become your blessings."
Author unknown (which is too bad because he or should should receive kudos for this)
Thursday, May 20, 2010
A spark of energy and a reminder...
I have been blessed with a spark of energy and a reminder that this journey is so much more than me. I have always known that God picked me for a very important reason...that I still do not know the answer to, but I am using this spark of energy to jump back in and raise awareness of this very rare disease.
Today I worked with my sister-in-law, Meg on a t-shirt design. I LOVE IT and hope you do too. I am strongly considering organizing a Myositis Walk. I drafted two letters, one to the Governor and one to the Mayor asking that they recognize September 21st as National Myositis Awareness Day. I asked a company if they would be interested in being a sponsor for the walk mentioned above. I have organized a meeting for members of the WI KIT group (people in Wisconsin who have myositis) to meet on Saturday, May 29th in Baraboo, WI for lunch. So far I have people coming from Eau Claire, Milwaukee and Wausau. I hope more decide to join us.
This is about bringing people together, raising awareness and helping others.
Today I worked with my sister-in-law, Meg on a t-shirt design. I LOVE IT and hope you do too. I am strongly considering organizing a Myositis Walk. I drafted two letters, one to the Governor and one to the Mayor asking that they recognize September 21st as National Myositis Awareness Day. I asked a company if they would be interested in being a sponsor for the walk mentioned above. I have organized a meeting for members of the WI KIT group (people in Wisconsin who have myositis) to meet on Saturday, May 29th in Baraboo, WI for lunch. So far I have people coming from Eau Claire, Milwaukee and Wausau. I hope more decide to join us.
This is about bringing people together, raising awareness and helping others.
Tuesday, May 18, 2010
Be thankful
"Be thankful for your mistakes, they will teach you valuable lessons. Be thankful when you're tired and weary, because it means you've made a difference."
Thursday, May 13, 2010
Still feeling yucky...
I am still not feeling great but I now believe that it is just a bug. My three sisters, one brother-in-law, mom and dad have the same queasy feeling in their stomachs this week. I am hoping to keep it to myself in my home and away from Bill, Emma and Jake.
Therapy is going well. I have the breathing technique down, inhale one, exhale four, inhale one, exhale four, etc....and I have noticed it works. I am much less short of breath when walking up the stairs if I remember to use the technique.
That's it for now.
It's a gloomy rainy day but there is sun in our near future.
klb
Therapy is going well. I have the breathing technique down, inhale one, exhale four, inhale one, exhale four, etc....and I have noticed it works. I am much less short of breath when walking up the stairs if I remember to use the technique.
That's it for now.
It's a gloomy rainy day but there is sun in our near future.
klb
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