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
Be Thankful....
"Be thankful for each new challenge, because it will build your strength and character."
Tuesday, May 11, 2010
Pulmonary Rehabilitation continues
It's a new week and on Monday I went back to Endeavor for another session. I have gained four pounds since I started which really bothers me. They, of course, say it's the prednisone. I know it's the prednisone but that doesn't make it any easier. In addition to weight gain there is a side effect called "moonface". I see that happening as well. It's hard but I need to go back to the post about a number being just a number and be OK with it. It certainly beats the alternative.
Today I feel lousy. I am not sure if it's because of another night of not sleeping well but I have a nauseous stomach which makes eating a challenge, which makes taking my medicine difficult, which circles back to the nauseous stomach...
I am home from work today... working in conjunction with resting. It seems to be the best way to get things done today.
That's the update. I feel a lot better when I have something positive to write. It's early in the day though....I may be back with something good yet.
Today I feel lousy. I am not sure if it's because of another night of not sleeping well but I have a nauseous stomach which makes eating a challenge, which makes taking my medicine difficult, which circles back to the nauseous stomach...
I am home from work today... working in conjunction with resting. It seems to be the best way to get things done today.
That's the update. I feel a lot better when I have something positive to write. It's early in the day though....I may be back with something good yet.
Wednesday, May 5, 2010
Be Thankful...
Be thankful for your limitations, because they give you opportunities for improvement.
Tuesday, May 4, 2010
PR (pulmonary rehabilitation) day two
Today I went back to Endeavor Therapy for my second of many visits to come. Here are some questions I have yet to get answers to and some answers to questions I had.
1) Is there scarring? I need to ask Dr. Adl
2) How is scarring measured versus inflammation? I need to ask Dr. Adl
3) Is Interstitial Lung Disease a Chronic Lung Disease? No. It is it's own entity, sometimes referred to as Fibrosis.
We reviewed the results of the pulmonary function test I had in November 2007 against the test I had in February 2010. There is about a 30% decrease in my overall lung function.
4) Is the goal to improve that number or stop/slow the progression? The goal is to stop or slow the progression. We may not see improvements.
I learned some new things too.
For example: I take a drug called OMEPRAZOLE DR...basically it is like prevacid or prilosec but a prescription versus over the counter. The bottle says take 1 capsule by mouth twice a day. I take a lot of medication and basically I take them twice a day. Once in the morning after I eat breakfast and again at night after dinner/before bed.
Well....that's not how to take this prescription. I need to take it 30 minutes before I eat breakfast and 30 minutes before I eat dinner. Honestly, I do not have symptoms of acid reflux or heartburn so I don't feel the positive effects of the drug. I take the drug because my lungs are already compromised and this is a proactive/preventative measure being taken to minimize other risk factors. Now I know and I need to figure out how to remember that one of the pills in my pill box needs to go down before all the others do. I forgot already tonight and Jake offered the following suggestion: "why not put one of those notes that stick places on the microwave or the stove or refrigerator or something like that so when you make dinner you remember?" So simple, so smart, so lucky to have kids to keep me sane.
Near the end of my visit today I had a chance to get on the treadmill. She started me at 1.0mph for 5 minutes. I thought I was going to die. Come on! Can we go at least to 3, 2.5 even....I don't have time to walk this slow. I did, I walked SLOW.
I hated it but the point is she is teaching me new breathing techniques. I need to take one quick breathe in through my nose and breathe out three breathes with "pursed lips". I don't think that's my rhythm but I stuck with her. In my running days I would breathe a rhythm of IN1-2-3, OUT1-2-3, IN1-2-3, OUT1-2-3,..I guess I have always been fond of dancing and the 123 works as good with a waltz as it does with a polka.
There are two kinds of breathing issues, obstructive and restrictive. I have restrictive issues. This means I do not have COPD or the types of diseases such as asthma, emphysema, bronchitis, etc...those diseases all have blockage or inflammation in the airways of the lungs or getting the oxygen out. My disease is restrictive meaning it's in the meat/muscle of my lungs and the challenge is in getting the oxygen in. I have a lot of work to do but I asked again today if a goal of running a mile with my daughter or walking three miles in 45 minutes was reasonable and although she didn't say "yes", she didn't say "no".
I have a homework assignment to read a guide called "To Air is Human". I just opened to page 71 and this might work for me.
"Household Fumes - Avoid strong fumes from cleaning products...."
"Dust - Dust raising jobs in your house or yard can make it harder for you to breathe...."
OK, I will be honest, it goes on to say how to accomplish those tasks and it doesn't say ask your husband or children....oh well. I didn't want to anyway.
Tomorrow I go back again. 1:30-2:45.
I'll keep you posted.
Thanks for checking in.
Kris
1) Is there scarring? I need to ask Dr. Adl
2) How is scarring measured versus inflammation? I need to ask Dr. Adl
3) Is Interstitial Lung Disease a Chronic Lung Disease? No. It is it's own entity, sometimes referred to as Fibrosis.
We reviewed the results of the pulmonary function test I had in November 2007 against the test I had in February 2010. There is about a 30% decrease in my overall lung function.
4) Is the goal to improve that number or stop/slow the progression? The goal is to stop or slow the progression. We may not see improvements.
I learned some new things too.
For example: I take a drug called OMEPRAZOLE DR...basically it is like prevacid or prilosec but a prescription versus over the counter. The bottle says take 1 capsule by mouth twice a day. I take a lot of medication and basically I take them twice a day. Once in the morning after I eat breakfast and again at night after dinner/before bed.
Well....that's not how to take this prescription. I need to take it 30 minutes before I eat breakfast and 30 minutes before I eat dinner. Honestly, I do not have symptoms of acid reflux or heartburn so I don't feel the positive effects of the drug. I take the drug because my lungs are already compromised and this is a proactive/preventative measure being taken to minimize other risk factors. Now I know and I need to figure out how to remember that one of the pills in my pill box needs to go down before all the others do. I forgot already tonight and Jake offered the following suggestion: "why not put one of those notes that stick places on the microwave or the stove or refrigerator or something like that so when you make dinner you remember?" So simple, so smart, so lucky to have kids to keep me sane.
Near the end of my visit today I had a chance to get on the treadmill. She started me at 1.0mph for 5 minutes. I thought I was going to die. Come on! Can we go at least to 3, 2.5 even....I don't have time to walk this slow. I did, I walked SLOW.
I hated it but the point is she is teaching me new breathing techniques. I need to take one quick breathe in through my nose and breathe out three breathes with "pursed lips". I don't think that's my rhythm but I stuck with her. In my running days I would breathe a rhythm of IN1-2-3, OUT1-2-3, IN1-2-3, OUT1-2-3,..I guess I have always been fond of dancing and the 123 works as good with a waltz as it does with a polka.
There are two kinds of breathing issues, obstructive and restrictive. I have restrictive issues. This means I do not have COPD or the types of diseases such as asthma, emphysema, bronchitis, etc...those diseases all have blockage or inflammation in the airways of the lungs or getting the oxygen out. My disease is restrictive meaning it's in the meat/muscle of my lungs and the challenge is in getting the oxygen in. I have a lot of work to do but I asked again today if a goal of running a mile with my daughter or walking three miles in 45 minutes was reasonable and although she didn't say "yes", she didn't say "no".
I have a homework assignment to read a guide called "To Air is Human". I just opened to page 71 and this might work for me.
"Household Fumes - Avoid strong fumes from cleaning products...."
"Dust - Dust raising jobs in your house or yard can make it harder for you to breathe...."
OK, I will be honest, it goes on to say how to accomplish those tasks and it doesn't say ask your husband or children....oh well. I didn't want to anyway.
Tomorrow I go back again. 1:30-2:45.
I'll keep you posted.
Thanks for checking in.
Kris
Saturday, May 1, 2010
Pulmonary Rehabilitation
On Thursday I had my first appointment at Endeavor Therapy. Over two and a half hours I met with a physical therapist and a respiratory therapist. They helped me understand what they could do to help and what the program would cover. I will meet with them for 1-2 hours two or three times a week for a 12 week period. They will help me understand my lungs and my lung disease and how I can make the most of what I have. Which by the is still pretty good. I know this because they monitored my oxygen levels and my heart rate during a six minute walk and it stayed very consistant.
What are my goals?
What are my goals?
- There are things I can control and things beyond my control. I want to know what I can do and then I want to do it. I want to continue to incorporate physical family activities into our life. Biking, walking, running, swimming, hiking, etc....
- I don't want to live my life in neutral, stopped by the worry or concern of doing too much and how it will effect me
- I do not want to gain anymore weight with this round of prednisone
- I would love to be able to run a mile with Emma
- I want to learn about my lungs and this aspect of the disease. Not what it means generically, but what it will mean specifically to me. Can it go away? Can it improve? Can we stop it from progressing?
That's where we will start.
Thanks for checking in.
Kris
Subscribe to:
Posts (Atom)