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
Saturday, September 20, 2008
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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