Last week I met with Dr. Sweeney to review the drugs I was taking and to see if I might be able to begin the process of weening myself from them. Many of the prescription drugs I take are in place to lessen the effects of other prescriptions and it becomes a crazy circle.
Here's what we decided.
I dropped one prescription completely.
I reduced a prescription to taking one dose in the evening instead of one in the morning and one at night.
I had my blood work tested and in a note I received in the mail from Dr. Sweeney this week it appears that my thyroid is now producing adequate amounts of the right hormone so I don't need to take that prescription anymore. We will test again in six months and see that the thyroid continues to remain stable. I have had a raging headache for about six days now and I will have to look into that but that will not stop me.
So here I am celebrating a success that isn't measured by a scale or the size of my pants.
YEAH !!!
Kris
Wednesday, May 20, 2009
Monday, May 18, 2009
Find Your Song - and Sing It !
I finished my book "Throw Out Fifty Things" by Gail Blanke. I liked it, alot.
Chapter 24: Find Your Song and Sing it !
It reads: "You've got to have a song. I mean, has any band of brothers or sisters ever gone into battle, ever gone out to save the world, start a movement, or seize the day without a song? No, the bagpipes, the fifes and drums, the raised voices always went first. We all need a song."
So what's my song? I have no idea. I have a couple of thoughts but nothing I am sure is mine.
My very first thought was "Hark the Voice of Jesus Crying". Oh I love that hymn.
Years ago I used to love to run to the song by Shania Twain, "She's Not Just a Pretty Face" It's a empowering song about women. I could sing that song loud and proud and know I am making a difference, if only it had a different title.
Do you have any thoughts on this? Do you know what your song is? What song would you sing before beginning each new day, before going into that tough meeting at work or before heading into the doctors office for test results? I can't wait to hear what you come up with.
Any thoughts on what my song should be?
I will keep you posted and let you know when I decide.
I think Gail (the author)would be disappointed in me if I kept her book on my shelf. However, I am baby stepping my way through the process so I better hold on to it for a while. You should check it out at your local library or go pick up a copy at your favorite bookstore. By the end of summer I will be ready to loan out my copy. Let me know if you are interested.
The other thing I am working on right now is going back and reviewing the sessions I had with my food coach. The first session had an assignment of writing down my one month, three month and six month goals. I am going to work through this again and see if I can continue to see results. My new one month goals are to walk 3 miles at least three days a week.
I want to have planned weekly meals and I want to journal on a daily basis with a special focus on what foods I am eating, when I am eating them and what the effects those particular foods have on me. Do some foods cause me to be more fatigued? Do some foods cause me to crave sweets? etc.... I know my metobolic type is "mixed" so now I need to figure out what foods are going to work the best for me.
I'll tell you what...the other day rice krispie treats were on sale at the grocery store. 3 boxes (24 treats) for $5.00. I learned that this is a sale I will pass on the next time. I LOVE rice krispie treats and eating just one has been a challenge I have lost. There are no more rice krispie treats in the house...thank goodness.
I have to hop on a conference call now.
Thanks for checking in.
Kris
Chapter 24: Find Your Song and Sing it !
It reads: "You've got to have a song. I mean, has any band of brothers or sisters ever gone into battle, ever gone out to save the world, start a movement, or seize the day without a song? No, the bagpipes, the fifes and drums, the raised voices always went first. We all need a song."
So what's my song? I have no idea. I have a couple of thoughts but nothing I am sure is mine.
My very first thought was "Hark the Voice of Jesus Crying". Oh I love that hymn.
Years ago I used to love to run to the song by Shania Twain, "She's Not Just a Pretty Face" It's a empowering song about women. I could sing that song loud and proud and know I am making a difference, if only it had a different title.
Do you have any thoughts on this? Do you know what your song is? What song would you sing before beginning each new day, before going into that tough meeting at work or before heading into the doctors office for test results? I can't wait to hear what you come up with.
Any thoughts on what my song should be?
I will keep you posted and let you know when I decide.
I think Gail (the author)would be disappointed in me if I kept her book on my shelf. However, I am baby stepping my way through the process so I better hold on to it for a while. You should check it out at your local library or go pick up a copy at your favorite bookstore. By the end of summer I will be ready to loan out my copy. Let me know if you are interested.
The other thing I am working on right now is going back and reviewing the sessions I had with my food coach. The first session had an assignment of writing down my one month, three month and six month goals. I am going to work through this again and see if I can continue to see results. My new one month goals are to walk 3 miles at least three days a week.
I want to have planned weekly meals and I want to journal on a daily basis with a special focus on what foods I am eating, when I am eating them and what the effects those particular foods have on me. Do some foods cause me to be more fatigued? Do some foods cause me to crave sweets? etc.... I know my metobolic type is "mixed" so now I need to figure out what foods are going to work the best for me.
I'll tell you what...the other day rice krispie treats were on sale at the grocery store. 3 boxes (24 treats) for $5.00. I learned that this is a sale I will pass on the next time. I LOVE rice krispie treats and eating just one has been a challenge I have lost. There are no more rice krispie treats in the house...thank goodness.
I have to hop on a conference call now.
Thanks for checking in.
Kris
Friday, May 8, 2009
Tuesday and Friday of this week
On Tuesday of this week I had a mammogram. I had one three years ago when I first got sick. At that time the doctors ordered every kind of test possible and sometimes they were done a couple times to ensure a solid baseline for any future tests. People with myositis and people who take some of the prescription drugs I have taken have a higher risk of certain kinds of cancers.
Anyway, on Tuesday, shortly after I got home, I received a call from the clinic that they wanted me to come back for more pictures and an ultrasound. There were some areas that they found questionable. I told Bill. We prayed. He did some internet surfing. I called my mom and dad and emailed my sisters. Although you can never have too many prayers, I didn't want to worry too many people and I was fearful of overreacting. I hoped that if I played it cool, it would be OK.
A friend of mine is a PA at Froedert in the breast care center so I looked her up on facebook and asked for some information and advise. I am going to share with you what she had to say so that if you or someone you love are ever faced with this second appointment, you might also feel better prepared. I told my friend Kimberly that in addition to being a church friend, I knew God had another purpose for our paths crossing. There are a few other very special things about Kimberly and her family that have God's handprints on them. We are blessed to know them.
Anyway, here is what she told me
As for the mammogram.... In young women, it is very common to get call backs due to the high density of breast tissue. When the radiologist sees dense breasts on mammogram, they like to get extra views - including compression views over those dense areas. If things do not flatten out, an ultasound is used to help locate any abnormal areas in that dense tissue. If they see something on ultrasound, they may want to do an ultrasound guided biopsy to determine exactly what it is (fibroadenoma, cyst, etc). Chances are, you may have a benign fibroadenoma or cyst that looks a little suspicious on the mammogram.
Things to ask, If they are having trouble with the density of the breasts, ask if an MRI would be helpful. MRI of the breast can give a better look in dense breast tissue. Be warned, that if they see things on MRI, the next step is second look ultasound and possible biopsy. If things get confusing, please feel free to call me
Where are you going for your mammograms? Remember, you usually have a choice where you can get things done, so if something doesn't seem right, ask for copies of your films and get a second opinion. Froedtert has a great breast care center that sees patients for any type of breast complaint. Anna Purdy, NP is usually your first contact and she is great! The radiologists are really good and trustworthy too. I don't want to put any other place down, I just know our department is good!
Hope that helps! I will keep you in my prayers! Let me know if you have more questions, OK? :)
Kimberly
Friday morning I was at the clinic for my follow up appointment at 8:10. After a few more compressions/pictures, I waited. The radiologist asked for the ultrasound. It was done and I waited. The doctor came in and said there was nothing to worry about. She did say that because I have a slightly higher risk that she would recommend having mammograms and MRI's rotated every six months and I agreed. By 9:15 I was on my way to work with a smile on my face and a weight off my shoulders and praise in my heart.
I think that's enough for one week.
Have a wonderful weekend.
Kris
Anyway, on Tuesday, shortly after I got home, I received a call from the clinic that they wanted me to come back for more pictures and an ultrasound. There were some areas that they found questionable. I told Bill. We prayed. He did some internet surfing. I called my mom and dad and emailed my sisters. Although you can never have too many prayers, I didn't want to worry too many people and I was fearful of overreacting. I hoped that if I played it cool, it would be OK.
A friend of mine is a PA at Froedert in the breast care center so I looked her up on facebook and asked for some information and advise. I am going to share with you what she had to say so that if you or someone you love are ever faced with this second appointment, you might also feel better prepared. I told my friend Kimberly that in addition to being a church friend, I knew God had another purpose for our paths crossing. There are a few other very special things about Kimberly and her family that have God's handprints on them. We are blessed to know them.
Anyway, here is what she told me
As for the mammogram.... In young women, it is very common to get call backs due to the high density of breast tissue. When the radiologist sees dense breasts on mammogram, they like to get extra views - including compression views over those dense areas. If things do not flatten out, an ultasound is used to help locate any abnormal areas in that dense tissue. If they see something on ultrasound, they may want to do an ultrasound guided biopsy to determine exactly what it is (fibroadenoma, cyst, etc). Chances are, you may have a benign fibroadenoma or cyst that looks a little suspicious on the mammogram.
Things to ask, If they are having trouble with the density of the breasts, ask if an MRI would be helpful. MRI of the breast can give a better look in dense breast tissue. Be warned, that if they see things on MRI, the next step is second look ultasound and possible biopsy. If things get confusing, please feel free to call me
Where are you going for your mammograms? Remember, you usually have a choice where you can get things done, so if something doesn't seem right, ask for copies of your films and get a second opinion. Froedtert has a great breast care center that sees patients for any type of breast complaint. Anna Purdy, NP is usually your first contact and she is great! The radiologists are really good and trustworthy too. I don't want to put any other place down, I just know our department is good!
Hope that helps! I will keep you in my prayers! Let me know if you have more questions, OK? :)
Kimberly
Friday morning I was at the clinic for my follow up appointment at 8:10. After a few more compressions/pictures, I waited. The radiologist asked for the ultrasound. It was done and I waited. The doctor came in and said there was nothing to worry about. She did say that because I have a slightly higher risk that she would recommend having mammograms and MRI's rotated every six months and I agreed. By 9:15 I was on my way to work with a smile on my face and a weight off my shoulders and praise in my heart.
I think that's enough for one week.
Have a wonderful weekend.
Kris
Thursday, May 7, 2009
Throw out fifty things....
I've been reading a book called "Throw Out Fifty Things -Clear the Clutter, Find Your Life" by Gail Blanke
I haven't finish the book yet but it has already inspired me to clean out my dresser and closet and I have gotten rid of nearly everything that doesn't fit. Well almost...it's in the back of the van and will be dropped off by the end of the day tomorrow.
One page in particular (page 102) struck me as being very powerful and empowering. Here's what it says:
"For me, people who live solely on their laurels and accomplishments from the past are a yawn. I don't want to know how wonderful you were in high school or how you used to bicycle twenty miles a day. I want to know: What are you doing with your life today? Looking backward holds no charm for me. What's done is done. Learn from it and move on." ....."There is something to learn here: Whether you are-or were-a VIP or a regular Joe, let the old stuff go. How else will you have room and energy to reinvent and recreate yourself." "I like change and am ready for the next big adventure," Pat says, "which is how I see life- as a series of adventures."
OK, now not one of those above words are mine but I think there is a lot there. As I learn to create my life with Myositis I have been trying to measure my health by what I can and can not do.
Example: Before I got sick I enjoyed completing triathalons. I know I am better when I can participate in them again. Is that really going to be the measure?
Before I got sick I was a size 10. I know I am better when I am back in that shape. Really? I am three years older and my body has been through a lot. I have climbed a hypothetical mountain and I feel as though the top is within my reach.
That's the adventure...the hypothetical mountain.
When I get to the top. I promise you I will enjoy the view and prepare for the next big adventure. I will not go down the mountain the same way I went up or I would end up see everything over again and not something new.
Friends, look ahead. Enjoy the adventure.
Talk to you soon.
Kris
I haven't finish the book yet but it has already inspired me to clean out my dresser and closet and I have gotten rid of nearly everything that doesn't fit. Well almost...it's in the back of the van and will be dropped off by the end of the day tomorrow.
One page in particular (page 102) struck me as being very powerful and empowering. Here's what it says:
"For me, people who live solely on their laurels and accomplishments from the past are a yawn. I don't want to know how wonderful you were in high school or how you used to bicycle twenty miles a day. I want to know: What are you doing with your life today? Looking backward holds no charm for me. What's done is done. Learn from it and move on." ....."There is something to learn here: Whether you are-or were-a VIP or a regular Joe, let the old stuff go. How else will you have room and energy to reinvent and recreate yourself." "I like change and am ready for the next big adventure," Pat says, "which is how I see life- as a series of adventures."
OK, now not one of those above words are mine but I think there is a lot there. As I learn to create my life with Myositis I have been trying to measure my health by what I can and can not do.
Example: Before I got sick I enjoyed completing triathalons. I know I am better when I can participate in them again. Is that really going to be the measure?
Before I got sick I was a size 10. I know I am better when I am back in that shape. Really? I am three years older and my body has been through a lot. I have climbed a hypothetical mountain and I feel as though the top is within my reach.
That's the adventure...the hypothetical mountain.
When I get to the top. I promise you I will enjoy the view and prepare for the next big adventure. I will not go down the mountain the same way I went up or I would end up see everything over again and not something new.
Friends, look ahead. Enjoy the adventure.
Talk to you soon.
Kris
Wednesday, April 22, 2009
Acceptance
Through all the ups and downs of the past few years I have met with a professional on occassion to help me cope. Her name is Rose and I met with her again this week and we talked about acceptance. Let me be very clear, acceptance does not mean giving up. It means trying daily to be OK with life as it is today.
I don't like how I look. It's a very hard thing to say outloud and it is a really hard way to live. She asked me to talk to myself as I would talk to a friend. It went something like this...
"Kris, I can't stand how I look. I am trying to eat right, exercise, make healthy choices and still I haven't lost a pound."
Now....what would I say to a friend.
"You are being too hard on yourself. Think of all you have been through. Is there something I can do to help?"
Did you hear that...by offering to help, am I telling my friend that I think she's right.
So many things came to mind during this talk we had.
I have often said that if someone calls me and wants to be sad or mad on the phone, they must know that I am going to offer them ideas and options. Bill has tried to tell me that sometimes people just want to vent, to let it out and have someone be on the receiving end. I've replied back...if that's true, then I am sure they have someone else they could call. By offering a solution, by trying to provide a brighter side or by making lemonade out of lemons what are my actions telling my friend. Guess what friends...I may have become a more compassionate listener today.
The other thing that came to mind when we met was that somewhere, sometime in my life I became goal oriented. I have a hard time going through a day or a week without a plan and if I don't have a plan I feel as though my actions have produced nothing. Nothing got done. On the flip side, I learned that if I have goals and I decide that I will keep working toward that goal no matter how long it takes, am I missing out on everyday joy because I am focused on the expected result?
So back to acceptance...each day I am trying to accept who I am today. I am going to continue to feed my body healthy things and I am going to move (exercise, activity, etc...), and I am going to give my body the rest it requires, and breath deep breathes from my belly and I am going to be grateful. If in my list of things I am grateful for a negative things comes to mind, I will write that down too and then follow it up with that negatives direct opposite. There is an outcome to all of this and it is beautiful.
More to follow...
I don't like how I look. It's a very hard thing to say outloud and it is a really hard way to live. She asked me to talk to myself as I would talk to a friend. It went something like this...
"Kris, I can't stand how I look. I am trying to eat right, exercise, make healthy choices and still I haven't lost a pound."
Now....what would I say to a friend.
"You are being too hard on yourself. Think of all you have been through. Is there something I can do to help?"
Did you hear that...by offering to help, am I telling my friend that I think she's right.
So many things came to mind during this talk we had.
I have often said that if someone calls me and wants to be sad or mad on the phone, they must know that I am going to offer them ideas and options. Bill has tried to tell me that sometimes people just want to vent, to let it out and have someone be on the receiving end. I've replied back...if that's true, then I am sure they have someone else they could call. By offering a solution, by trying to provide a brighter side or by making lemonade out of lemons what are my actions telling my friend. Guess what friends...I may have become a more compassionate listener today.
The other thing that came to mind when we met was that somewhere, sometime in my life I became goal oriented. I have a hard time going through a day or a week without a plan and if I don't have a plan I feel as though my actions have produced nothing. Nothing got done. On the flip side, I learned that if I have goals and I decide that I will keep working toward that goal no matter how long it takes, am I missing out on everyday joy because I am focused on the expected result?
So back to acceptance...each day I am trying to accept who I am today. I am going to continue to feed my body healthy things and I am going to move (exercise, activity, etc...), and I am going to give my body the rest it requires, and breath deep breathes from my belly and I am going to be grateful. If in my list of things I am grateful for a negative things comes to mind, I will write that down too and then follow it up with that negatives direct opposite. There is an outcome to all of this and it is beautiful.
More to follow...
Sunday, April 12, 2009
Tuesday, April 7, 2009
37-40 and other updates
37. Each night before you go to bed, complete the following statements: I am thankful
for __________. Today I accomplished _________.
38. Remember that you are too blessed to be stressed.
39. Enjoy the ride. Remember this is not Disney World and you certainly don't want a fast pass. You only have one ride through life, so make the most of it and enjoy the ride.
40. May your troubles be less. May your blessings be more. May nothing but happiness come through your door!
Well, there we go...40 ways to improve 2009. I hope you found one or two things that will be helpful to you. I wish you happiness, always.
and other updates -
I saw Dr. Cohen last week and we agreed that this is where we will stay. We are not going to try any new drug combinations. We are going to stick with the drug cocktail that I am taking right now. My disease is still simmering but that is better than boiling. I will still have to balance my activities and for now, I am going to love being active with my family and leave the races and finish lines for others. It is time to start teaching myself to measure success in ways that don't include a finish line or the right number on the scale. If I am only going to be satisfied when I get there, I am going to miss out on an amazing number of experiences and the joy, laughter and smiles that come with that.
One of my favorite quotes is "The real voyage of discovery consists not in seeking new landscapes but in having new eyes."- Marcel Proust
On Saturday afternoon I met a woman who has been diagnosed with polymyositis. It's been almost three years now and it finally felt OK to do this. Ginny and I met at the Cheesecake Factory and spent nearly three hours getting to know each other. I've had more experiences with doctors and prescriptions than Ginny has had so far and it was really nice to be able to share what I've learned and support her at this time. We met knowing that we had something in common (myositis) however, after just a few minutes I found out that Ginny knows my mother-in-law as their paths crossed while Pat was working for St. Johns in the activities area. Later in our conversation I found out that Ginny is good friends with Pastor Odden (the pastor that married Bill and I) and then I found out that Ginny goes to church with one of the men I work for. What a small, small world.
Here's how I got to know Ginny....
The Myositis Asscociation has support groups set up across the country called KIT groups. KIT stands for Keeping In Touch. Wisconsin did not have a KIT group and Ginny and I were both interested in attending a meeting so together we are going to get a group up and running in the state of Wisconsin. I have also signed up to be an ambassador for the Myositis Association. My responsibility will be to help/support someone who was recently diagnosed. It's a scary disease, and it's still scary for me but I certainly feel better about it now than I did three years ago.
New topic:
I have to tell you how my "gentle cleanse" turned out. I cheated on day 1 and nibbled on some ham while I was making dinner for the family and I ate a piece of Pizza Hut Pan Pizza that was in the refrigerator that day too. The rest of the week (until Saturday) I was doing great and feeling good. I was not feeling deprived. I didn't feel like I was missing anything and then came Saturday night. I ate movie theatre popcorn, took a bite of Jake's ice cream sandwich and from there I went downhill. And then came Sunday....OUT OF CONTROL. Once I admitted I was out of control I gave myself permission to stay there and enjoy the whole day that way. Guess what happened!!!! I got a giant zit on my chin. I ached more than I have ached in weeks and I did not feel good.
Monday I decided to start over again. Just like last time around, I cheated. I ate ice cream from the carton (it was Kopps Turtle Custard). Today, I feel stronger. It's 3:11 in the afternoon and I haven't cheated.
YIKES... I have to go and pick Emma up from school and take her to piano.
I'll write more later.
Thanks for checking in on me...
klb
for __________. Today I accomplished _________.
38. Remember that you are too blessed to be stressed.
39. Enjoy the ride. Remember this is not Disney World and you certainly don't want a fast pass. You only have one ride through life, so make the most of it and enjoy the ride.
40. May your troubles be less. May your blessings be more. May nothing but happiness come through your door!
Well, there we go...40 ways to improve 2009. I hope you found one or two things that will be helpful to you. I wish you happiness, always.
and other updates -
I saw Dr. Cohen last week and we agreed that this is where we will stay. We are not going to try any new drug combinations. We are going to stick with the drug cocktail that I am taking right now. My disease is still simmering but that is better than boiling. I will still have to balance my activities and for now, I am going to love being active with my family and leave the races and finish lines for others. It is time to start teaching myself to measure success in ways that don't include a finish line or the right number on the scale. If I am only going to be satisfied when I get there, I am going to miss out on an amazing number of experiences and the joy, laughter and smiles that come with that.
One of my favorite quotes is "The real voyage of discovery consists not in seeking new landscapes but in having new eyes."- Marcel Proust
On Saturday afternoon I met a woman who has been diagnosed with polymyositis. It's been almost three years now and it finally felt OK to do this. Ginny and I met at the Cheesecake Factory and spent nearly three hours getting to know each other. I've had more experiences with doctors and prescriptions than Ginny has had so far and it was really nice to be able to share what I've learned and support her at this time. We met knowing that we had something in common (myositis) however, after just a few minutes I found out that Ginny knows my mother-in-law as their paths crossed while Pat was working for St. Johns in the activities area. Later in our conversation I found out that Ginny is good friends with Pastor Odden (the pastor that married Bill and I) and then I found out that Ginny goes to church with one of the men I work for. What a small, small world.
Here's how I got to know Ginny....
The Myositis Asscociation has support groups set up across the country called KIT groups. KIT stands for Keeping In Touch. Wisconsin did not have a KIT group and Ginny and I were both interested in attending a meeting so together we are going to get a group up and running in the state of Wisconsin. I have also signed up to be an ambassador for the Myositis Association. My responsibility will be to help/support someone who was recently diagnosed. It's a scary disease, and it's still scary for me but I certainly feel better about it now than I did three years ago.
New topic:
I have to tell you how my "gentle cleanse" turned out. I cheated on day 1 and nibbled on some ham while I was making dinner for the family and I ate a piece of Pizza Hut Pan Pizza that was in the refrigerator that day too. The rest of the week (until Saturday) I was doing great and feeling good. I was not feeling deprived. I didn't feel like I was missing anything and then came Saturday night. I ate movie theatre popcorn, took a bite of Jake's ice cream sandwich and from there I went downhill. And then came Sunday....OUT OF CONTROL. Once I admitted I was out of control I gave myself permission to stay there and enjoy the whole day that way. Guess what happened!!!! I got a giant zit on my chin. I ached more than I have ached in weeks and I did not feel good.
Monday I decided to start over again. Just like last time around, I cheated. I ate ice cream from the carton (it was Kopps Turtle Custard). Today, I feel stronger. It's 3:11 in the afternoon and I haven't cheated.
YIKES... I have to go and pick Emma up from school and take her to piano.
I'll write more later.
Thanks for checking in on me...
klb
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