The topic of my blog is about to change. Not too worry, occassionally I will provide updates regarding my dermatomysitis however, there haven't been any updates to report and I am missing the activity of writing about life in general.
Last Tuesday, I had my second to last coaching sessions with my food coach, Rachel. It's getting scary to think that by next Tuesday, I will have all the information and resources that I need to continue on this journey of healthy living. I've learned a lot, practiced a lot, made some changes and tried so many new things.
To begin I need to list my goals and desires. Why I am committed to this goal and to whom will I be accountable? Then I have to document the specific action steps I will take to get there.
Let me not forget gratitude. It will be important for me to keep track of those things that I am thankful for, that's the Vitamin J (joy) I referenced in my last blog.
So, that's the new format...feel free to jump in anytime to comment, hold me accountable, etc...
The journey continues.....
Monday, December 15, 2008
Thursday, October 30, 2008
A few really hard days...
Over the past two weeks I have had a few really hard days. I am guessing it's just my body adjusting to another change in prednisone but I also have a rash that I haven't had before. Today I decided to stop ignoring it and to call Dr. Cohen and report in. As you know, I have the type of myositis called dermatomyositis. Until now, I haven't had many skin issues. Many times individuals with dermatomyositis can get a rash and I believe I may have a "shawl rash". They call it this because it covers the same area a "shawl" would if you happen to have one wrapped around your shoulders. I've also been struggling with fatigue and moods. A good mood is a beautiful thing. A bad mood, a sad mood, and a frustrated mood are not. It is very hard for me to be anything but happy, at least on the outside. I know how many things I have to be thankful for. I know that there are many more people who's lives are presented with greater challenges but there are days, thankfully not many, when I say "why me". When I whine that I am sick of being sick and I want my old life back.
Writing is therapy...it's OK to have those feelings. It's even better when they don't take over days and weeks and months of your life.
The other day when I met with Rachel (my food coach), we talked about what we feed ourselves and she encouraged me to take a look at how much vitamin J I was getting. If 10% of my vitamin J comes from food, that's great. It means that 90% is coming from other things.
Vitamin J is joy.
I am making a list now of all the things that bring me joy and finding a way to fill up my days with it. It's just a start but the first thing I noticed was how neat it is to go for a walk for the purpose of joy.
Have a great day.
klb
Writing is therapy...it's OK to have those feelings. It's even better when they don't take over days and weeks and months of your life.
The other day when I met with Rachel (my food coach), we talked about what we feed ourselves and she encouraged me to take a look at how much vitamin J I was getting. If 10% of my vitamin J comes from food, that's great. It means that 90% is coming from other things.
Vitamin J is joy.
I am making a list now of all the things that bring me joy and finding a way to fill up my days with it. It's just a start but the first thing I noticed was how neat it is to go for a walk for the purpose of joy.
Have a great day.
klb
Monday, October 27, 2008
Good Heart
This morning I had a follow up appointment with Dr. Zwicke, cardiologist. Although the appointment took longer than I had expected (2 1/2 hours), the outcome was worth the wait. Dr. Zwicke doesn't feel it is necessary to schedule further appointments. My heart is working well and the last echocardiogram showed improvement from two years ago. She has no concerns but will keep my file and records in a pending status in case a concern would come up in the future. Yeah. A good heart, that makes me happy.
Wednesday, October 15, 2008
Hello friends
Hello friends,
I am sorry it has been so long since I last logged in to give you an update. I guess the primary reason is that I have nothing new to report. Everything is the same.
I am now (knock on wood) down to seven mg of prednisone and on Sunday I will move to six.
The things I have noticed with this change is a weird temperature change in my finger tips. Sometimes they are really hot, burning and other times they feel cold and other times they throb a lot. Like the throb that happens after slamming it in a door or with a hammer. Not that extreme, not that painful, just a throbbing and aching that isn't normal. I can live with it.
I still meet with my food coach every two weeks. I haven't been on a scale so I can't say if I have lost any weight, but I can definitely say that I am living a healthier life. I'm learning a lot about whole foods vs. processed foods and I am learning about some things that I can do to give me "balance" in my life. I certainly can't work on everything at once, but at least I am learning how to make small changes that will have a big impact in time (Thank you Rachel)
The newest thing I got from Rachel is an article on morning journaling. As you all know, I enjoy putting my thoughts into words but Rachel has encouraged me to do this in the morning, before getting out of bed....with paper and a pen, not a keyboard. "The pen is a primal tool, connecting your hand to your mind." I have to be realistic. This will not happen on the mornings that I get up and walk at 5:30. Rather I will do it as a mind exercise for the days that I walk midday or in the evenings.
Speaking of walking, I am starting to think about walking attire for the winter. What is the best thing to wear on your feet if you are walking outside in the slush, snow or ice? Do you wear walking shoes or do you wear boots? For those winter walkers or runners, let me know your thoughts.
I want to make every effort to stay outside versus mall walking, rejoining a gym or working out to a DVD/Video. It really is beautiful even when the stars are still out in the morning, crazy.
That's about all for now. Thanks for checking in and being patient with my delay in posting anything.
Kris B
I am sorry it has been so long since I last logged in to give you an update. I guess the primary reason is that I have nothing new to report. Everything is the same.
I am now (knock on wood) down to seven mg of prednisone and on Sunday I will move to six.
The things I have noticed with this change is a weird temperature change in my finger tips. Sometimes they are really hot, burning and other times they feel cold and other times they throb a lot. Like the throb that happens after slamming it in a door or with a hammer. Not that extreme, not that painful, just a throbbing and aching that isn't normal. I can live with it.
I still meet with my food coach every two weeks. I haven't been on a scale so I can't say if I have lost any weight, but I can definitely say that I am living a healthier life. I'm learning a lot about whole foods vs. processed foods and I am learning about some things that I can do to give me "balance" in my life. I certainly can't work on everything at once, but at least I am learning how to make small changes that will have a big impact in time (Thank you Rachel)
The newest thing I got from Rachel is an article on morning journaling. As you all know, I enjoy putting my thoughts into words but Rachel has encouraged me to do this in the morning, before getting out of bed....with paper and a pen, not a keyboard. "The pen is a primal tool, connecting your hand to your mind." I have to be realistic. This will not happen on the mornings that I get up and walk at 5:30. Rather I will do it as a mind exercise for the days that I walk midday or in the evenings.
Speaking of walking, I am starting to think about walking attire for the winter. What is the best thing to wear on your feet if you are walking outside in the slush, snow or ice? Do you wear walking shoes or do you wear boots? For those winter walkers or runners, let me know your thoughts.
I want to make every effort to stay outside versus mall walking, rejoining a gym or working out to a DVD/Video. It really is beautiful even when the stars are still out in the morning, crazy.
That's about all for now. Thanks for checking in and being patient with my delay in posting anything.
Kris B
Saturday, September 20, 2008
PULL OUT YOUR TSHIRTS
Pull out your tshirts, tomorrow is the day.
September 21st = National Myositis Awareness Day
Thank you for helping me raise awareness.
Sincerely,
Kris Lane Barger
September 21st = National Myositis Awareness Day
Thank you for helping me raise awareness.
Sincerely,
Kris Lane Barger
Thursday, September 18, 2008
National Myositis Awareness
Right now, as I type, doctors, patients, families, etc...are gathering in Denver, CO for the 15th annual myositis conference.
Many people were surprised that I didn't go to the conference. I will someday. At this time in my life, my vacation time and our vacation budget for family adventures seems much more enjoyable.
A couple of things happened since I last logged in:
My boss asked me to take on some additional responsibilities. I am now the Program Manager for the investment program at PyraMax Bank. As you can imagine the timing is quite exciting with all that is happening in the market. An annuity is still a great option for the right client. Call me if you want to meet to discuss this.
I had a couple of doctors appointments this week. My appointment with Dr. Cohen was typical. My numbers are not changing but there is an expected increase in White Blood Cell count which is typical with someone who is taking prednisone. At our appointment we talked seriously about what we should do next. Number one priority for me is getting off of Prednisone, for good.
With that being said she did say this might be as good as it gets and only time will tell. We certainly will try other things but only if it gets significantly worse. I guess that's a good and a bad thing.
Good deal, this is as good as it gets....move on. Make a plan that we can live with. Create a routine that works.
Bad deal...is this really as good as it gets? My greatest concern is my neck and arms. Both get very fatigued as the day goes on. My neck is the weakest part and honestly sometimes I wonder how I will keep it on my shoulders.
On Sunday I will move to 8mg of prednisone and then I will reduce it by 1 mg every two weeks.
I also received a call from the cardiologist that I saw a couple of years ago. Her records indicated the need for a follow up visit. I totally forgot I had a leaky valve. NO FREAKING OUT. Lots of people have leaking valves and lead a long and healthy life. The just found out about mine because of all the tests that were done early in the diagnosis process. I will see her in October or November.
Today I saw Dr. Sweeney. He is the doctor that gave me the homeopathic remedy. I was really excited to see him because I have a terrible cold right now (fever, cough, runny nose, sore throat, etc...). I had read about these remedies that work over night and that's what I was hoping for. No, I didn't get it.
Guess what he said? The fact that I have a cold is a very good sign of the remedy working. I haven't had a cold in the last couple of years. Isn't that ironic? He said that many people who have a disease or cancer never get a common cold. The body is too busy working on bigger things to bother with it. The fact that I have a cold is a clue to him that the remedy is working and he asked that I not take the pellets for a couple of weeks. He believes that the remedy, if I give it time, will continue to provide me energy for an extended period of time.
OK, this is getting long.
Don't forget to wear your tshirts this weekend, especially on Sunday, as that is the official, National Myositis Awarenss day.
Many people were surprised that I didn't go to the conference. I will someday. At this time in my life, my vacation time and our vacation budget for family adventures seems much more enjoyable.
A couple of things happened since I last logged in:
My boss asked me to take on some additional responsibilities. I am now the Program Manager for the investment program at PyraMax Bank. As you can imagine the timing is quite exciting with all that is happening in the market. An annuity is still a great option for the right client. Call me if you want to meet to discuss this.
I had a couple of doctors appointments this week. My appointment with Dr. Cohen was typical. My numbers are not changing but there is an expected increase in White Blood Cell count which is typical with someone who is taking prednisone. At our appointment we talked seriously about what we should do next. Number one priority for me is getting off of Prednisone, for good.
With that being said she did say this might be as good as it gets and only time will tell. We certainly will try other things but only if it gets significantly worse. I guess that's a good and a bad thing.
Good deal, this is as good as it gets....move on. Make a plan that we can live with. Create a routine that works.
Bad deal...is this really as good as it gets? My greatest concern is my neck and arms. Both get very fatigued as the day goes on. My neck is the weakest part and honestly sometimes I wonder how I will keep it on my shoulders.
On Sunday I will move to 8mg of prednisone and then I will reduce it by 1 mg every two weeks.
I also received a call from the cardiologist that I saw a couple of years ago. Her records indicated the need for a follow up visit. I totally forgot I had a leaky valve. NO FREAKING OUT. Lots of people have leaking valves and lead a long and healthy life. The just found out about mine because of all the tests that were done early in the diagnosis process. I will see her in October or November.
Today I saw Dr. Sweeney. He is the doctor that gave me the homeopathic remedy. I was really excited to see him because I have a terrible cold right now (fever, cough, runny nose, sore throat, etc...). I had read about these remedies that work over night and that's what I was hoping for. No, I didn't get it.
Guess what he said? The fact that I have a cold is a very good sign of the remedy working. I haven't had a cold in the last couple of years. Isn't that ironic? He said that many people who have a disease or cancer never get a common cold. The body is too busy working on bigger things to bother with it. The fact that I have a cold is a clue to him that the remedy is working and he asked that I not take the pellets for a couple of weeks. He believes that the remedy, if I give it time, will continue to provide me energy for an extended period of time.
OK, this is getting long.
Don't forget to wear your tshirts this weekend, especially on Sunday, as that is the official, National Myositis Awarenss day.
Thursday, September 11, 2008
This is the day...
"This is the day the Lord has made. We will rejoice and be glad in it."
I just received this lovely reminder from my counsins wife, Michelle, in a caringbridge entry she does for her son Nathaniel (who is doing wonderfully and enjoying kindergarten) Our God works in such amazing ways.
Today I needed the reminder. I am wiped out and feel like complaining, not rejoicing.
I added five hours to my work schedule on September 1st and with Labor Day in there, this is the first week I am actually doing it. I know it seems like a ridiculously small amount...an hour a day, but I am sure feeling it. I also reduced my prednisone by 1mg and believe it or not, that too can have a significant impact. I am determined to get off this drug and will take the wait and see approach. Bill reminded me this morning that the same thing happened when I went from 12 to 11 about a month ago and eventually I felt strong enough to reduce it again.
Three reasons to rejoice:
I have been walking one mile, two and now three days a week for a month.
Yesterday morning I was blessed with a beautiful sunrise during my early morning walk.
My children are healthy.
When you find yourself gloomy, write down three reasons to rejoice.
It's a great way to put the complaining and gloom behind you as well as being a wonderful reminder of how very blessed we are.
I just received this lovely reminder from my counsins wife, Michelle, in a caringbridge entry she does for her son Nathaniel (who is doing wonderfully and enjoying kindergarten) Our God works in such amazing ways.
Today I needed the reminder. I am wiped out and feel like complaining, not rejoicing.
I added five hours to my work schedule on September 1st and with Labor Day in there, this is the first week I am actually doing it. I know it seems like a ridiculously small amount...an hour a day, but I am sure feeling it. I also reduced my prednisone by 1mg and believe it or not, that too can have a significant impact. I am determined to get off this drug and will take the wait and see approach. Bill reminded me this morning that the same thing happened when I went from 12 to 11 about a month ago and eventually I felt strong enough to reduce it again.
Three reasons to rejoice:
I have been walking one mile, two and now three days a week for a month.
Yesterday morning I was blessed with a beautiful sunrise during my early morning walk.
My children are healthy.
When you find yourself gloomy, write down three reasons to rejoice.
It's a great way to put the complaining and gloom behind you as well as being a wonderful reminder of how very blessed we are.
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