I was just going through my mail from the weekend and I have been asked to help with another Myositis event. A TMA member by the name of Lydia Vazquez donates a quilt to the Myositis Association each year and they in turn raffle it off.
I have 25 raffle tickets to sell and they are each $2.00.
It is a fence designed quilt with butterfly detailing. It's actually quite beautiful.
If you are interested in purchasing a raffle ticket or would like to pass the word on to others that might be interested that would be great.
Please email me at
wbarger@wi.rr.com or beemarket@gmail.com if you would like a ticket.
Thank you.
Kris B
Monday, July 28, 2008
WOW...
WOW...
I just looked and I can't believe that the month of July is nearly over and I have been terrible keeping you up to date. I guess that might be what happens when energy comes back into your life and you can start doing more.
I am very pleased with the results of the homeopathic approach. I have an energy that I haven't had for years. I am still taking it slow but I am also really excited about being able to add more activity back into my life. The feeling is indescribeable.
My next appointment with Dr. Cohen is the first week of August and I am hoping that we will restart the process of tapering the prednisone again. That is always the true test.
Sneak peak....July miles to date are 318.3. I am completely overwhelmed by everyone's commitment to walking and excited to let you know that employer is holding a walking campaign and all the PyraMax Bank miles will be added to the trip to Denver. All the miles for July are precious to me but the ones that came from the "Just Bee" team that completed the Danskin Triathlon this year are really cool.
My friend Ruth from the Historic Third Ward Association, my mom, my sisters Beth and Vicki and my sister Beth's sister-in-law Neesa and her mother-in -law Devra all participated in the event, and all crossed the finish line. It was a really neat to cheer them on and it was inspiring beyond words to see all the participants. I am hopeful that I will be among the participants next year.
I am sure there is much more to tell but for now I must sign off.
Thank you my friends for catching up with me.
Kris B
I just looked and I can't believe that the month of July is nearly over and I have been terrible keeping you up to date. I guess that might be what happens when energy comes back into your life and you can start doing more.
I am very pleased with the results of the homeopathic approach. I have an energy that I haven't had for years. I am still taking it slow but I am also really excited about being able to add more activity back into my life. The feeling is indescribeable.
My next appointment with Dr. Cohen is the first week of August and I am hoping that we will restart the process of tapering the prednisone again. That is always the true test.
Sneak peak....July miles to date are 318.3. I am completely overwhelmed by everyone's commitment to walking and excited to let you know that employer is holding a walking campaign and all the PyraMax Bank miles will be added to the trip to Denver. All the miles for July are precious to me but the ones that came from the "Just Bee" team that completed the Danskin Triathlon this year are really cool.
My friend Ruth from the Historic Third Ward Association, my mom, my sisters Beth and Vicki and my sister Beth's sister-in-law Neesa and her mother-in -law Devra all participated in the event, and all crossed the finish line. It was a really neat to cheer them on and it was inspiring beyond words to see all the participants. I am hopeful that I will be among the participants next year.
I am sure there is much more to tell but for now I must sign off.
Thank you my friends for catching up with me.
Kris B
Wednesday, July 9, 2008
Calcarea-carbonica
I decided yesterday that I was going to try the homeopathic approach to my disease versus the route of the trial drug study I had been considering. I got caught up on the word "chemotherapy" and just didn't want to have to try and get past it at this time. I want to be healthy. I will choose health.
The first step I took was signing Bill and I up for a cooking class:
"EATING FOR ENERGY "Wednesday, July 16th 5:30 to 7:00 PM, $29In this class, food coach Suzanne Monroe will focus on healthy cooking that provides lasting energy for hearty summer play. You'll learn about which specific foods to avoid, and which foods to eat for increased energy and stamina in these long summer
For more info, call 414.336.1111 or visit www.milwaukeepublicmarket.org
Not only did I sign up for the cooking class but Suzanne Monroe and I have a phone appointment tomorrow at 1:00 pm to discuss my health and see if she has any suggestions regarding nutrition and how what I ingest might help. If you google Suzane Monroe you will see that she has a site/business called reallifefood.com. More to follow on that.
So now what is calcarea-carbonica? It is what was on the five little tiny pellets I put under my tongue at 2:00 pm today. It is the remedy that Dr. Sweeney came up with to help the symptoms of my disease. Again, he emphasized and I will emphasize for you...this is not a cure, but there isn't a cure in traditional medicine either.
It is my hope that it will bring some energy back into my life. It is my hope that it will help curb the crashes that happen after I have a day of "normal" activity and "crash and burn" that happen the days that follow a fun filled weekend.
I am suppose to make notes of how I am feeling and then call Dr Sweeney back in two weeks and fill him in on the details. I will either take more of the remedy at that time or he will make an adjustment based on the feedback I am able to provide. I am excited about this new approach.
That's all for now.
Take care.
My quote for today: "Nurture Hope. Open your Mind."
klb
The first step I took was signing Bill and I up for a cooking class:
"EATING FOR ENERGY "Wednesday, July 16th 5:30 to 7:00 PM, $29In this class, food coach Suzanne Monroe will focus on healthy cooking that provides lasting energy for hearty summer play. You'll learn about which specific foods to avoid, and which foods to eat for increased energy and stamina in these long summer
For more info, call 414.336.1111 or visit www.milwaukeepublicmarket.org
Not only did I sign up for the cooking class but Suzanne Monroe and I have a phone appointment tomorrow at 1:00 pm to discuss my health and see if she has any suggestions regarding nutrition and how what I ingest might help. If you google Suzane Monroe you will see that she has a site/business called reallifefood.com. More to follow on that.
So now what is calcarea-carbonica? It is what was on the five little tiny pellets I put under my tongue at 2:00 pm today. It is the remedy that Dr. Sweeney came up with to help the symptoms of my disease. Again, he emphasized and I will emphasize for you...this is not a cure, but there isn't a cure in traditional medicine either.
It is my hope that it will bring some energy back into my life. It is my hope that it will help curb the crashes that happen after I have a day of "normal" activity and "crash and burn" that happen the days that follow a fun filled weekend.
I am suppose to make notes of how I am feeling and then call Dr Sweeney back in two weeks and fill him in on the details. I will either take more of the remedy at that time or he will make an adjustment based on the feedback I am able to provide. I am excited about this new approach.
That's all for now.
Take care.
My quote for today: "Nurture Hope. Open your Mind."
klb
Wednesday, July 2, 2008
The weather must be getting better....
The weather must have improved because we nearly doubled our miles in the month of June.
Together we walked 488.89 miles to bring our combined total to......2647.6 miles as of June 30th. At this rate a 3rd person is going to be able to come along to Denver before the end of July. I will try and do a better job getting the miles communicated as I understand it is providing motivation to many of you and certainly to me as well.
I felt great last week. So great that I actually thought maybe I had turned the corner and remission must be right there within my reach. Guess what? I did it again. I rolled around in that good feeling like a happy puppy in the sunshine. I had energy and I used it and I loved it and this week, I feel like a truck hit me. Oh well, it was FUN while it lasted and it will come again.
Today, I caught up on a blog of a fellow myositis person. I was stunned to see that she had quickly slipped out of remission and was prescribed with chemo infusion. Guess what...it's the same drug, same procedure as the trial drug study I have been keeping my fingers crossed at participating in. No where in all the consent forms was this drug referenced as a chemo drug and by no means did the side effects sound as dreadful as the ones she experienced. So, I am going to forward her blog to the doctor that is heading up the study here at Froedert with a few more questions. I am not saying that I will not do it, but I am saying that I will be asking a few more direct questions before signing my name on the dotted line.
I'll talk to you all soon.
Thanks for checking in.
klb
Together we walked 488.89 miles to bring our combined total to......2647.6 miles as of June 30th. At this rate a 3rd person is going to be able to come along to Denver before the end of July. I will try and do a better job getting the miles communicated as I understand it is providing motivation to many of you and certainly to me as well.
I felt great last week. So great that I actually thought maybe I had turned the corner and remission must be right there within my reach. Guess what? I did it again. I rolled around in that good feeling like a happy puppy in the sunshine. I had energy and I used it and I loved it and this week, I feel like a truck hit me. Oh well, it was FUN while it lasted and it will come again.
Today, I caught up on a blog of a fellow myositis person. I was stunned to see that she had quickly slipped out of remission and was prescribed with chemo infusion. Guess what...it's the same drug, same procedure as the trial drug study I have been keeping my fingers crossed at participating in. No where in all the consent forms was this drug referenced as a chemo drug and by no means did the side effects sound as dreadful as the ones she experienced. So, I am going to forward her blog to the doctor that is heading up the study here at Froedert with a few more questions. I am not saying that I will not do it, but I am saying that I will be asking a few more direct questions before signing my name on the dotted line.
I'll talk to you all soon.
Thanks for checking in.
klb
Thursday, June 26, 2008
Myositis Awareness is spreading....
The second round of tshirts has been received and most of them have been shipped out or personally delivered. I continue to receive really nice feedback from those that have seen them or worn them. I hope you are enjoying yours. If you don't have one but want one, you can still order until July 11th.
Saturday was a beautiful day at the Schlitz Audobon Center. 29 people joined Brownie Troop 1230 for a walk that allowed us to raise additional awarenss for Myositis and a few families said they would log their summer miles and email them to me. I think we are on our way to getting a number of people to Denver by the September Myositis Conference.
On Monday I gave a presentation to a number of my coworkers that were interested in learning more about Myositis. It truly is in the "giving back" that healing comes. This week (knock on wood) I have felt pretty good. Today was actually the third time this week that I have gone for a walk. Keep your fingers crossed (folded is probably a better word) that this continues. Maybe I won't feel bad enough to be the chosen "guinea pig" for the Rimstudy at Froedert. During the presentation on Monday, the Wellness director at our bank announced that the third quarter walking campaign for the American Heart Association would have a dual purpose...walking for AHA and the miles will be donated to my Myositis campaign. Two separate upcoming Fridays will be designated toward Myositis awareness. Any of my coworkers that buy my tshirt will be able to wear them to work on those two days. I am so blessed that life's journey lead me to PyraMax Bank. The support I receive is remarkable.
Milwaukee's Summerfest started today. The theme is "Get your smile on" Makes you want to smile, doesn't it.
Have a lovely day.
Kris B
Saturday was a beautiful day at the Schlitz Audobon Center. 29 people joined Brownie Troop 1230 for a walk that allowed us to raise additional awarenss for Myositis and a few families said they would log their summer miles and email them to me. I think we are on our way to getting a number of people to Denver by the September Myositis Conference.
On Monday I gave a presentation to a number of my coworkers that were interested in learning more about Myositis. It truly is in the "giving back" that healing comes. This week (knock on wood) I have felt pretty good. Today was actually the third time this week that I have gone for a walk. Keep your fingers crossed (folded is probably a better word) that this continues. Maybe I won't feel bad enough to be the chosen "guinea pig" for the Rimstudy at Froedert. During the presentation on Monday, the Wellness director at our bank announced that the third quarter walking campaign for the American Heart Association would have a dual purpose...walking for AHA and the miles will be donated to my Myositis campaign. Two separate upcoming Fridays will be designated toward Myositis awareness. Any of my coworkers that buy my tshirt will be able to wear them to work on those two days. I am so blessed that life's journey lead me to PyraMax Bank. The support I receive is remarkable.
Milwaukee's Summerfest started today. The theme is "Get your smile on" Makes you want to smile, doesn't it.
Have a lovely day.
Kris B
Tuesday, June 17, 2008
To be or not to be...
To be or not to be a guinnea pig? That is the question.
On Friday I received the call I was hoping for. The Rimstudy at Froedert Hospital called to gather additional information from me. This doesn't mean I am the qualified participant that they are looking for but it does mean that they are considering me. I should receive in the mail today or tomorrow a consent package to review. Once I do that, I will call to set up an appointment which will likely be mid-July. They will do muscle strength tests and lab work to see if I qualify. Until then, I have made a commitment to keep my prescriptions all the same throughout the study. That means that the tapering of the prednisone has now ceased and I will remain at 12.5 until further notice.
Briefly, this is what I know about the study.
If they chose me, week one I will receive an infusion. The infusion is done at Froedert and it is preceeded by IV doses of Tylenol and Benadryl to offset any adverse side effects. The infusion will take six hours during which time I will be hooked up to monitors and be resting in a hospital bed. I might be a little tired because of the benadryl but that should be it. Week two, I will get another infusion (same as above). Then I will have weekly lab work done and a month later I will get another infusion, followed by another infusion the next week and then just monitoring via lab and muscle tests and possibly another muscle biopsy. She promised the muscle biopsy would not be as bad as the last one, which, if you don't recall absolutely sucked.
Two of the infusions will be the real thing, two of the infusions will be a placebo.
I will let you know when that leg of the journey begins.
This coming Saturday, Emma's Brownie troop has scheduled a family walk at the Audobon Nature Center. The girls will be walking and talking and in the end we will have more miles to add to the journey to Denver. I feel very blessed to have so many people supporting this Myositis Awareness campaign in so many different ways.
Well, that's all for now.
Thanks for checking in.
Make today WONDERFUL.
klb
On Friday I received the call I was hoping for. The Rimstudy at Froedert Hospital called to gather additional information from me. This doesn't mean I am the qualified participant that they are looking for but it does mean that they are considering me. I should receive in the mail today or tomorrow a consent package to review. Once I do that, I will call to set up an appointment which will likely be mid-July. They will do muscle strength tests and lab work to see if I qualify. Until then, I have made a commitment to keep my prescriptions all the same throughout the study. That means that the tapering of the prednisone has now ceased and I will remain at 12.5 until further notice.
Briefly, this is what I know about the study.
If they chose me, week one I will receive an infusion. The infusion is done at Froedert and it is preceeded by IV doses of Tylenol and Benadryl to offset any adverse side effects. The infusion will take six hours during which time I will be hooked up to monitors and be resting in a hospital bed. I might be a little tired because of the benadryl but that should be it. Week two, I will get another infusion (same as above). Then I will have weekly lab work done and a month later I will get another infusion, followed by another infusion the next week and then just monitoring via lab and muscle tests and possibly another muscle biopsy. She promised the muscle biopsy would not be as bad as the last one, which, if you don't recall absolutely sucked.
Two of the infusions will be the real thing, two of the infusions will be a placebo.
I will let you know when that leg of the journey begins.
This coming Saturday, Emma's Brownie troop has scheduled a family walk at the Audobon Nature Center. The girls will be walking and talking and in the end we will have more miles to add to the journey to Denver. I feel very blessed to have so many people supporting this Myositis Awareness campaign in so many different ways.
Well, that's all for now.
Thanks for checking in.
Make today WONDERFUL.
klb
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