At my appointment yesterday I reiterated to the doctor how important it is to me to get off of prednisone. She shares that but again reassured me she has my best interests at heart and in her mind. She said we may get to a point where we agree that "this is as good as it gets" but she doesn't think we are there yet.
I inquired about the following treatments:
Rixuximab
CellCept
IVIG
All three of these treatments are discussed on the Myositis Message Boards and I was wondering if any of them could help me get off of the prednisone.
She does not feel that the IVIG is the correct treatment for my type of Myositis (dermatomyositis). She has used it but in cases much worse then where I am right now.
Rixuximab - Has good results but is typically not an approved treatment by the insurance provider and therefore she would need to write a case to the pharmeceutical company to possibly include me in a test. The only problem with that is I might be the one to receive the placebo and I would need to be weened off of the Imuran(azathioprine) before they would consider me a possible candidate. That also means that I would have to allow my condition to get worse in order to see if the new treatment might be better.
Finally, CellCept...she said this would be a lateral move. This medication would replace the Imuran and should have the same results. Not sure why I would want to make a change if the results should be the same but again we are holding off of that for now as well.
The lab work was done and I should receive a call with results in the next day or so. I passed all but one of the strength tests she performs. My neck muscles are showing signs of weakness again. To treat this and prevent weakness in other areas she changed the tapering schedule for the prednisone. I was at alternating doses this week 20 mg one day and 10 mg the next....as of today I am taking 20 mg for the next week every day. Then down to 15 mg for a week, 10 mg, 5 mg, etc...
She was honest with me and although we scheduled my next appointment for eight weeks down the road and lab appointment in four weeks she thinks she will be seeing me sooner because of the pain and stiffness I am beginning to experience. Today, on the treadmill for the first time I noticed the stiffness in my ankles. It took a lot for me to slow down my pace and just enjoy the activity and not worry about how far or how fast I could go in 15 minutes...I can thank my team of walkers for that. THANK YOU.
So, that's where I am right now.
I will keep you posted....keep your miles coming.
klb
Quote for the day: " Wake up with a smile and go after life...Live it, enjoy it, taste it, smell it, feel it." Joe Knapp
Wednesday, January 30, 2008
Monday, January 28, 2008
What's going on?
Well, Saturday was a bummer of a day and Sunday I was wiped out too. Today on my way to work I wondered if my arms were going to get me there. Not like I was flapping my wings or anything but they were very weak and trembly. As the day progressed it did not get better and I noticed my wrists and neck were also feeling stiff. My goal is to work a four hour day and I did not give up and go home early, though I did consider it more than once.
On the way home from work I had a choice to make....go home or go to the gym.
I went to the gym. It did not make my arms feel any better (or worse) but it did great things for my mind and spirit. Not that you are looking for a word of advise but if you are waiting to go to the gym or walk around the block, DON'T....do it because you can.
Tomorrow I have an appointment with Dr Cohen. I look forward to seeing her and sharing with her my spreadsheet statistics and also finding out what happens now.
I continue to taper my prednisone (which might be why I am feeling this way again).
Saturday I forgot to give myself my shot (which I now inject in two doses) so I gave myself a full dose around 2:30 AM on Sunday morning when I remembered. This might be why Sunday was so hard.
I will let you know how the appointment goes tomorrow.
Thanks again for checking in; for caring.
klb
Today's Quote:
"To love someone deeply gives you strength." -- Lao Tzu
On the way home from work I had a choice to make....go home or go to the gym.
I went to the gym. It did not make my arms feel any better (or worse) but it did great things for my mind and spirit. Not that you are looking for a word of advise but if you are waiting to go to the gym or walk around the block, DON'T....do it because you can.
Tomorrow I have an appointment with Dr Cohen. I look forward to seeing her and sharing with her my spreadsheet statistics and also finding out what happens now.
I continue to taper my prednisone (which might be why I am feeling this way again).
Saturday I forgot to give myself my shot (which I now inject in two doses) so I gave myself a full dose around 2:30 AM on Sunday morning when I remembered. This might be why Sunday was so hard.
I will let you know how the appointment goes tomorrow.
Thanks again for checking in; for caring.
klb
Today's Quote:
"To love someone deeply gives you strength." -- Lao Tzu
Saturday, January 26, 2008
Look how far we have already gone...
Together with my Uncle Dave, my mother-in-law Pat and my sister-in-law, Meg we have crossed 61.05 miles of our journey to Denver.
I know there are a few other people logging miles so I will add them as I get them.
enjoy the journey and each beautiful step you are blessed to take.
klb
I know there are a few other people logging miles so I will add them as I get them.
enjoy the journey and each beautiful step you are blessed to take.
klb
Spreadsheet Update
Hello,
Thanks for checking in. I don't recall if I mentioned that my friends Laurie and Scott created an excel spreadsheet for me to use to document how I am feeling. I have been logging data on it since the first week of January and although I don't see any trends, I continue to log the information and really feel as though one of these days something going to hit me and the lightbulbs and bells will go off.
I have given a point value to the following items: what time I wake up, how long I slept that night, negative points for the time I am awake during the night, points for working at least four hours, going to the gym, doing my physical therapy, points value for what time I go to bed at night and if I have to rest in the afternoon. I am also logging my medication, changes to it and when I forget to take it. This week I added headaches to the spreadsheet.
The highest value I can get in any given day is a 10.
The first week I averaged 6.89
week two was around 4.64 and this past week 6.32.
Today is a bummer of a day. I started off strong and by noon I was wiped out. I went upstairs to rest and while I was laying there I could feel my muscles just throbbing. I closed my eyes and prayed that this was not the beginning of a flare rather the result of the four trips to the gym this past week and so I am cautiously optimistic that I could possibly blame this on that increase of activity. I'm not giving up the gym though. It's good for my body, my mind, my spirit and of course the miles needed to get me to Denver. Speaking of miles, the week of January 20th we have logged 17.5 miles. Thanks for your help. I will place another post shortly that shows how far we have traveled together.
Have a great weekend and remember this:
"If you have only one smile in you, give it to the people you love." -- Maya Angelou
klb
Thanks for checking in. I don't recall if I mentioned that my friends Laurie and Scott created an excel spreadsheet for me to use to document how I am feeling. I have been logging data on it since the first week of January and although I don't see any trends, I continue to log the information and really feel as though one of these days something going to hit me and the lightbulbs and bells will go off.
I have given a point value to the following items: what time I wake up, how long I slept that night, negative points for the time I am awake during the night, points for working at least four hours, going to the gym, doing my physical therapy, points value for what time I go to bed at night and if I have to rest in the afternoon. I am also logging my medication, changes to it and when I forget to take it. This week I added headaches to the spreadsheet.
The highest value I can get in any given day is a 10.
The first week I averaged 6.89
week two was around 4.64 and this past week 6.32.
Today is a bummer of a day. I started off strong and by noon I was wiped out. I went upstairs to rest and while I was laying there I could feel my muscles just throbbing. I closed my eyes and prayed that this was not the beginning of a flare rather the result of the four trips to the gym this past week and so I am cautiously optimistic that I could possibly blame this on that increase of activity. I'm not giving up the gym though. It's good for my body, my mind, my spirit and of course the miles needed to get me to Denver. Speaking of miles, the week of January 20th we have logged 17.5 miles. Thanks for your help. I will place another post shortly that shows how far we have traveled together.
Have a great weekend and remember this:
"If you have only one smile in you, give it to the people you love." -- Maya Angelou
klb
Monday, January 21, 2008
Mileage for the week of January 13th
Hi everyone,
The following miles were recorded this week 13.3. Many thanks to the contributors. I am not doing this alone and that feels GREAT.
I am in the process of doing some more recruiting for contributors of miles (walkers, runners, swimmers and bikers) and am hoping to increase my own time and miles this week as well. It's 11:15 PM and thankfully Jake has swimming lessons tomorrow afternoon. That means that I can sleep an hour later (God willing) and walk in the afternoon during his lesson instead of getting up early and getting out the door before anyone else wakes up. There is quite a bit of snow here and we will all be leaving the house earlier just to get to work on time.
Here's a quick quote for the day:
"What greater thing is there for two human souls than to feel that they are joined for life, to strengthen each other in all labor, to rest on each other in all sorrow, to minister to each other in all pain..." -- George Eliot
Good night.
More updates to follow soon.
klb
The following miles were recorded this week 13.3. Many thanks to the contributors. I am not doing this alone and that feels GREAT.
I am in the process of doing some more recruiting for contributors of miles (walkers, runners, swimmers and bikers) and am hoping to increase my own time and miles this week as well. It's 11:15 PM and thankfully Jake has swimming lessons tomorrow afternoon. That means that I can sleep an hour later (God willing) and walk in the afternoon during his lesson instead of getting up early and getting out the door before anyone else wakes up. There is quite a bit of snow here and we will all be leaving the house earlier just to get to work on time.
Here's a quick quote for the day:
"What greater thing is there for two human souls than to feel that they are joined for life, to strengthen each other in all labor, to rest on each other in all sorrow, to minister to each other in all pain..." -- George Eliot
Good night.
More updates to follow soon.
klb
Friday, January 18, 2008
Comfort the Body, Lift the Spirit
Comfort the Body, Lift the Spirit was the headline of the most recent Myositis Association newsletter. The first paragraph is as follows:
"It's a huge order to fill the prescription above, especially when it comes to someone with a chronic illness. The very drugs that save lives often create their own problems, or perhaps there's no drug available. Many patients with chronic disease acknowledge their losses, seek medical intervention, then embark on a journey to find balance, meaning and the best health possible within their new reality."
That was very eye opening for me. I guess I never thought of myself having a chronic disease and what does it mean to have the "best health possible", where will this journey take me?
To the top of the mountain, right Dad?
The newsletter focuses on CAM which is the acronoym for Complementary and alternative medicine which includes, yoga, meditation, massage, tai chi, acupuncture and herbal preparations. In the article an individual who practices Chinese medicine says "one of the hardest things is understanding the complex effects of the many drugs a patient is already taking. There's a kind of "piling on" of drugs:"one drug may have side effects; so the second one may treat the side effects and, in turn have its own side effects, so a third drug is needed, and on and on". You can not imagine what relief I felt when I read this. It was a "WOW" moment, a moment of validation that I am being treated for a chronic disease and there are other things I can try as a supplement to my current treatment. Currently I take eight different pills, six of those were prescribed as treatment for Myositis, of those four are treating side effects of two.
A call to our new health insurance provider to see about CAM coverage will be added to the "to do" list for tomorrow.
I'll keep you posted.
Well, it's 4:30 AM. I've been up since 2:30 so I am going to head back to bed and see if I can sleep for an hour or so before facing the new day.
My quote for today comes from the Myositis newsletter as well.
"The way I see it, everyone's been dealt a hand. They may not be able to change the cards on the table, but with encouragement and wisdom, they can play them for the best outcome possible." - MaryLee Calmes-
"It's a huge order to fill the prescription above, especially when it comes to someone with a chronic illness. The very drugs that save lives often create their own problems, or perhaps there's no drug available. Many patients with chronic disease acknowledge their losses, seek medical intervention, then embark on a journey to find balance, meaning and the best health possible within their new reality."
That was very eye opening for me. I guess I never thought of myself having a chronic disease and what does it mean to have the "best health possible", where will this journey take me?
To the top of the mountain, right Dad?
The newsletter focuses on CAM which is the acronoym for Complementary and alternative medicine which includes, yoga, meditation, massage, tai chi, acupuncture and herbal preparations. In the article an individual who practices Chinese medicine says "one of the hardest things is understanding the complex effects of the many drugs a patient is already taking. There's a kind of "piling on" of drugs:"one drug may have side effects; so the second one may treat the side effects and, in turn have its own side effects, so a third drug is needed, and on and on". You can not imagine what relief I felt when I read this. It was a "WOW" moment, a moment of validation that I am being treated for a chronic disease and there are other things I can try as a supplement to my current treatment. Currently I take eight different pills, six of those were prescribed as treatment for Myositis, of those four are treating side effects of two.
A call to our new health insurance provider to see about CAM coverage will be added to the "to do" list for tomorrow.
I'll keep you posted.
Well, it's 4:30 AM. I've been up since 2:30 so I am going to head back to bed and see if I can sleep for an hour or so before facing the new day.
My quote for today comes from the Myositis newsletter as well.
"The way I see it, everyone's been dealt a hand. They may not be able to change the cards on the table, but with encouragement and wisdom, they can play them for the best outcome possible." - MaryLee Calmes-
Tuesday, January 15, 2008
Let the bad out and make room for the good...
The last couple of days have been on the side of "less than pleasant". I try really hard to keep positive and upbeat but sometimes I just have to lay out all that stinks so that I can see through it all to what is great and wonderful.
I am in the process of tapering the prednisone. This might be the reason I am having a challenge controlling the "crabby, angry" Kris. This morning my observant Emma said, "mom, you must not feel very good". "Why would you say that, I just said that I was hot." I replied. "Well, I thought that might be why you are so mad this morning."
I hate that my children see me not feeling well. Emma just asked me if the medicine that I am changing is called "mad medicine".
I also decided recently to log back on to the Weight Watchers etools. Do you want to know what makes me mad? The fact that in the last 14 weeks I have lost only 3.2 pounds.
I also find the unwanted facial hair, the daily raging headaches, waking up at 2:00AM and not being able to fall back to sleep and then struggling to be an active part of my family after dinner a big bummer.
The question is, do I call my doctor and tell her I am not myself? Is it possible I just need to "tough this out" and is tapering from prednisone like breaking an addiction? If I hold out, will it get better, will I feel better, will I be my pleasant positive self again? I really am not a crabby person. It is not my nature so it feels like "who the heck is controlling me?" "Who's in my head and body and how do I get back in."
My quote is from a hymn I learned as a child...the line I find myself humming over and over again is "I am trusting thee Lord Jesus, trusting only thee..."
Really, what else is there. There is a plan. I am part of it and He is in control.
Good Night.
Kris B
I am in the process of tapering the prednisone. This might be the reason I am having a challenge controlling the "crabby, angry" Kris. This morning my observant Emma said, "mom, you must not feel very good". "Why would you say that, I just said that I was hot." I replied. "Well, I thought that might be why you are so mad this morning."
I hate that my children see me not feeling well. Emma just asked me if the medicine that I am changing is called "mad medicine".
I also decided recently to log back on to the Weight Watchers etools. Do you want to know what makes me mad? The fact that in the last 14 weeks I have lost only 3.2 pounds.
I also find the unwanted facial hair, the daily raging headaches, waking up at 2:00AM and not being able to fall back to sleep and then struggling to be an active part of my family after dinner a big bummer.
The question is, do I call my doctor and tell her I am not myself? Is it possible I just need to "tough this out" and is tapering from prednisone like breaking an addiction? If I hold out, will it get better, will I feel better, will I be my pleasant positive self again? I really am not a crabby person. It is not my nature so it feels like "who the heck is controlling me?" "Who's in my head and body and how do I get back in."
My quote is from a hymn I learned as a child...the line I find myself humming over and over again is "I am trusting thee Lord Jesus, trusting only thee..."
Really, what else is there. There is a plan. I am part of it and He is in control.
Good Night.
Kris B
Saturday, January 12, 2008
Mileage Update:
Just a quick mileage update:
This week we have a combined total of 22.5 miles, that's 30.25 miles down and just 1013.25 to go.
Now we are getting somewhere.
Doesn't it feel good?
I will provide a better update later, right now the Packer game is on. They just scored. WHEW.
Thanks for miles.
klb
This week we have a combined total of 22.5 miles, that's 30.25 miles down and just 1013.25 to go.
Now we are getting somewhere.
Doesn't it feel good?
I will provide a better update later, right now the Packer game is on. They just scored. WHEW.
Thanks for miles.
klb
Monday, January 7, 2008
A day of fasting...
Hello friends and family,
One of my favorite books when I was pregnant and then the first year and the toddler years was "A Girlfriends Guide..." to all of these times. What I liked the best is that the author was very down to earth, she used everyday words and examples and basically she told it like it is. I thought about those books last week when I was prepping for the colonoscopy that took place on Friday. It's one of those things, you don't ask too many questions because sometimes the ignorance is bliss....on the other hand it sure would have been nice to know that it might feel like the life being sucked out of me after two doses of Ginger Lemon Fleet stuff. YIKES.
Anyway, I considered documenting this in my blog but then feared you might all log off and never log back in. If anyone wants to know, just ask. I promise to tell it like it is.
The three things that were the best things I learned from this:
1) I can go without eating. I can control what goes in my mouth. I can say "no" to cravings and temptations if I really want to. From midnight on Wednesday, January 2rd until after the procedure on Friday, January 4th I was on a clear liquid diet. I survived.
2) You will likely not lose an extraordinary amount of weight during these three days. I don't know why, but I was hoping for at least 5 pounds and the scale went nowhere, not up but not down either.
3) The amnesia drug is a beautiful thing, and most important...it's better to go through it then wonder or worry that something might be wrong.
Great news, nothings wrong in/with my colon. :0)
On to a new subject:
YIPPEE, I have walking partners. My dad, my mom, my mother-in-law Pat Barger, my sister-in-law, Meg Williams, my sister, Beth, my Uncle Dave (it's never too late to join)
Last week we logged 7.75 miles. I'll let you know when we get to Franklin. We have a PyraMax Bank there and I am sure they would want us to stop by and say "hi" as long as we are passing right by.
There is no requirement to when to email me the miles so I will just let you know once a week how far we have gone together based on what I hear from the walkers.
Thank you though, all of those miles were not mine.
Quote for the day:
"We do what we have to do so that we can do what we want to do." -Denzel Washington
Thanks for checking in.
klb
One of my favorite books when I was pregnant and then the first year and the toddler years was "A Girlfriends Guide..." to all of these times. What I liked the best is that the author was very down to earth, she used everyday words and examples and basically she told it like it is. I thought about those books last week when I was prepping for the colonoscopy that took place on Friday. It's one of those things, you don't ask too many questions because sometimes the ignorance is bliss....on the other hand it sure would have been nice to know that it might feel like the life being sucked out of me after two doses of Ginger Lemon Fleet stuff. YIKES.
Anyway, I considered documenting this in my blog but then feared you might all log off and never log back in. If anyone wants to know, just ask. I promise to tell it like it is.
The three things that were the best things I learned from this:
1) I can go without eating. I can control what goes in my mouth. I can say "no" to cravings and temptations if I really want to. From midnight on Wednesday, January 2rd until after the procedure on Friday, January 4th I was on a clear liquid diet. I survived.
2) You will likely not lose an extraordinary amount of weight during these three days. I don't know why, but I was hoping for at least 5 pounds and the scale went nowhere, not up but not down either.
3) The amnesia drug is a beautiful thing, and most important...it's better to go through it then wonder or worry that something might be wrong.
Great news, nothings wrong in/with my colon. :0)
On to a new subject:
YIPPEE, I have walking partners. My dad, my mom, my mother-in-law Pat Barger, my sister-in-law, Meg Williams, my sister, Beth, my Uncle Dave (it's never too late to join)
Last week we logged 7.75 miles. I'll let you know when we get to Franklin. We have a PyraMax Bank there and I am sure they would want us to stop by and say "hi" as long as we are passing right by.
There is no requirement to when to email me the miles so I will just let you know once a week how far we have gone together based on what I hear from the walkers.
Thank you though, all of those miles were not mine.
Quote for the day:
"We do what we have to do so that we can do what we want to do." -Denzel Washington
Thanks for checking in.
klb
Wednesday, January 2, 2008
Farther, faster....
A journey of 1044 miles goes a lot faster when you have people walking with and for you...
I got a call last night from my dad and an email from my Uncle Dave and they were wondering if they could help me cover the miles to Denver. I will still keep track of my individual miles but I will add their miles covered (and my mom's too) to my overall total and I will get farther faster. I will still walk, bike and swim all 1044 miles but I will do it in the company of friends and family.
If you would like to add your own miles to the overall total you can either put them in the comments section of my blog or email them to me directly (wbarger@wi.rr.com). Who knows, with help I might be able to take this "virtual trip" back and forth to Denver a couple of times between now and September 18th.
How many miles do you think we can cover making it a combined effort?
Really, I wonder what you think. If you would like to submit your guess, I will award a prize (yet to be determined) to the one who comes the closest.
Regarding this goal of raising awareness and money for myositis research, it is definitely a work in progress. I am learning as I go and adding and changing along the way. If you have any ideas or questions or need clarification, please let me know. One thing that someone asked was regarding my campaign page on the TMA website. You do not need to donate there if you don't want to put in your information on their website. I will email them and find out if I can issue receipts and/or documentation for your tax reporting purposes and let you know via my blog when I hear back from them regarding this.
I have to tell you, there is a wave of relief knowing that more than a mile or two will be covered every day and that it isn't all on my shoulders. I was wondering how I might keep you all entertained over the next 38 weeks at that pace...talk about the turtle winning the race. That would be too much scenic reporting for even the most positive person.
I'm looking forward to seeing who else might want to log their miles.
Here is a New Years Wish for you. I received it from my sister-in-law Meg, but I am certain she wouldn't mind me sharing it.
Treasure the memories of yesterday, make new dreams for tomorrow.
May you begin each day with a new dream...and end every day with a peaceful heart.
Happy new year!
klb
I got a call last night from my dad and an email from my Uncle Dave and they were wondering if they could help me cover the miles to Denver. I will still keep track of my individual miles but I will add their miles covered (and my mom's too) to my overall total and I will get farther faster. I will still walk, bike and swim all 1044 miles but I will do it in the company of friends and family.
If you would like to add your own miles to the overall total you can either put them in the comments section of my blog or email them to me directly (wbarger@wi.rr.com). Who knows, with help I might be able to take this "virtual trip" back and forth to Denver a couple of times between now and September 18th.
How many miles do you think we can cover making it a combined effort?
Really, I wonder what you think. If you would like to submit your guess, I will award a prize (yet to be determined) to the one who comes the closest.
Regarding this goal of raising awareness and money for myositis research, it is definitely a work in progress. I am learning as I go and adding and changing along the way. If you have any ideas or questions or need clarification, please let me know. One thing that someone asked was regarding my campaign page on the TMA website. You do not need to donate there if you don't want to put in your information on their website. I will email them and find out if I can issue receipts and/or documentation for your tax reporting purposes and let you know via my blog when I hear back from them regarding this.
I have to tell you, there is a wave of relief knowing that more than a mile or two will be covered every day and that it isn't all on my shoulders. I was wondering how I might keep you all entertained over the next 38 weeks at that pace...talk about the turtle winning the race. That would be too much scenic reporting for even the most positive person.
I'm looking forward to seeing who else might want to log their miles.
Here is a New Years Wish for you. I received it from my sister-in-law Meg, but I am certain she wouldn't mind me sharing it.
Treasure the memories of yesterday, make new dreams for tomorrow.
May you begin each day with a new dream...and end every day with a peaceful heart.
Happy new year!
klb
Tuesday, January 1, 2008
Happy New Year
Happy New Year family and friends.
The first of 1044 miles was walked today. It took 17 minutes. I am counting on the fact that I will either get faster or be able to walk longer or both as I get stronger. The bike ride will be a key element in covering the miles in front of me. I can get farther faster on a bike.
I received a subscription to the Oprah magazine from my brother-in-law, Joe for Christmas. I love it. In an article I read today the author wrote an entertaining "last will and testament". The end of the article she writes to her children the following:
"....you get my favorite quote from the book we were reading last night when one of us (okay, it was me) fell sound asleep. I am hoping you'll consider taking Christopher Robin's word for it just the way Pooh did: "You just remember this: You're braver than you believe, and stronger than you seem, and smarter than you think." "
Happy New Year everyone.
klb
The first of 1044 miles was walked today. It took 17 minutes. I am counting on the fact that I will either get faster or be able to walk longer or both as I get stronger. The bike ride will be a key element in covering the miles in front of me. I can get farther faster on a bike.
I received a subscription to the Oprah magazine from my brother-in-law, Joe for Christmas. I love it. In an article I read today the author wrote an entertaining "last will and testament". The end of the article she writes to her children the following:
"....you get my favorite quote from the book we were reading last night when one of us (okay, it was me) fell sound asleep. I am hoping you'll consider taking Christopher Robin's word for it just the way Pooh did: "You just remember this: You're braver than you believe, and stronger than you seem, and smarter than you think." "
Happy New Year everyone.
klb
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