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
Thursday, June 26, 2008
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
Wednesday, June 4, 2008
wrong link
www.nch.org doesn't appear to be the correct address.
When I figure it out I will let you know.
sorry.
When I figure it out I will let you know.
sorry.
Wednesday, June 4th
What an exciting day for doctor stuff to report...
Today I met with a family practice doctor that I was referred to by the Physical Therapist I have been working with.
He is a family practice doctor who also practice homeopathy. It was really a great interview for both of us. We both asked lots of questions and he will take the answers I provided and try to come up with a treatment plan. I believe I will hear back from him late this week or early next week. He gave me a book to read called "Catching Good Health with Homeopathic Medicine". I am reading it as fast as I can so that I have a better understanding of this approach. What is most appealing right from the get go is the total body approach (mind, body and spirit). Many of the meds I take are ones that offset the side effects of the other, etc... that has never felt right.
For more information on homeopathic medicine you can go to www.nch.org
Now the next exciting news happened later in the afternoon when my rheumatologist called me to give me my lab results. Some numbers are good, some numbers not so good. Not terrible but enough to be recognized as active disease. For this reason she asked my permission to send my medical records to a contact of hers at Froedert Hospital who is a central contact for an NIH study on the drug Rituxin. It would be an infusion treatment that takes about 5-7 hours in weeks one and nine. One infusion would be a placebo and one would be the Rituxin. All participants will get both the placebo and the Rituxin but we wouldn't know which infusion was what. She isn't certain they will chose me as a participant but feels it's worth a shot. For more information on the study you can go to www.rimstudy.org
I believe if they don't chose me for the rimstudy, than the homepathic approach is the way to go. If they do chose me, homepathic approach will still be an option down the road. Right now it just feels great to be heading in the direction of a new approach to better health.
Thanks for checking in.
klb
Today I met with a family practice doctor that I was referred to by the Physical Therapist I have been working with.
He is a family practice doctor who also practice homeopathy. It was really a great interview for both of us. We both asked lots of questions and he will take the answers I provided and try to come up with a treatment plan. I believe I will hear back from him late this week or early next week. He gave me a book to read called "Catching Good Health with Homeopathic Medicine". I am reading it as fast as I can so that I have a better understanding of this approach. What is most appealing right from the get go is the total body approach (mind, body and spirit). Many of the meds I take are ones that offset the side effects of the other, etc... that has never felt right.
For more information on homeopathic medicine you can go to www.nch.org
Now the next exciting news happened later in the afternoon when my rheumatologist called me to give me my lab results. Some numbers are good, some numbers not so good. Not terrible but enough to be recognized as active disease. For this reason she asked my permission to send my medical records to a contact of hers at Froedert Hospital who is a central contact for an NIH study on the drug Rituxin. It would be an infusion treatment that takes about 5-7 hours in weeks one and nine. One infusion would be a placebo and one would be the Rituxin. All participants will get both the placebo and the Rituxin but we wouldn't know which infusion was what. She isn't certain they will chose me as a participant but feels it's worth a shot. For more information on the study you can go to www.rimstudy.org
I believe if they don't chose me for the rimstudy, than the homepathic approach is the way to go. If they do chose me, homepathic approach will still be an option down the road. Right now it just feels great to be heading in the direction of a new approach to better health.
Thanks for checking in.
klb
Tuesday, June 3, 2008
Miles as of May 31st....
Our combined total is now a BEAUTIFUL 2217.07.
Do you know what that means?
Well, we have now provided the miles for two people to get to Denver. We need about 915 miles to get the next person there. Keep walking and certainly feel free to tell someone else about Myositis and have them join our journey.
To do that, they simply have to email me (or add their miles to the comments area of the blog).
The email address I have set up for the awareness campaign is beemarket@gmail.com
Thanks for all your steps.
I appreciate you.
klb
Do you know what that means?
Well, we have now provided the miles for two people to get to Denver. We need about 915 miles to get the next person there. Keep walking and certainly feel free to tell someone else about Myositis and have them join our journey.
To do that, they simply have to email me (or add their miles to the comments area of the blog).
The email address I have set up for the awareness campaign is beemarket@gmail.com
Thanks for all your steps.
I appreciate you.
klb
Monday, June 2, 2008
105....
105 shirts.
I am thrilled to announce that a total of 105 shirts have been ordered. Included in that is the preliminary order that was submitted for a few family members so they could help me get the word out. Here's an email I received last week from my mother-in-law...
"Hi, Kris--I wore my new shirt when I went grocery shopping this morning, and a lady stopped me and told me that she thought the message on the back was just wonderful!!
Pat"
When you get your shirts and you have a chance to be "walking awareness" please share with me any comments you get. If they are good, and why wouldn't they be...I will post them here.
On Monday, June 23rd, I will be making a presentation at PyraMax Bank (my employer) to share information on Myositis. At that time I will have the opportunity to share the t-shirt campaign with my coworkers. I tell you this in case you find others that want to order, another order will be submitted in early July.
I saw the doctor last week. We made an adjustment to the way I will taper my prednisone so that I take it every day instead of every other. This is being done in hopes of not having so much down time/recovery from the zero dose day. The other thing that I wanted to share about this appointment was a new way to describe my disease.
She compared my disease activity to the white hot coals of a fire. They do not look hot but if you touched them you would get burned. In the same manner, my disease is still active. It does not look active but its effects are still there (for now).
The last two days I have had some increases in the pain/discomfort in my hips. Not sure if this is active disease, effects of lower doses of prednisone or something as simple as sleeping on a very hard surface while camping this past weekend. I'm not too excited about it but I am certainly not going to worry about it, just keeping an eye on things.
The last thing I wanted to share with you today is an exciting email I received from the Myositis Association. They forwarded an article about a high school athlete who competed recently in the state WIAA competion. She is from Green Bay and two years ago, after being diagnosed with Dermatomyositis was barely able to make it around the track.
Last week she was competing again. I put out a few emails today to see if she would be interested in campaigning with me and if we might be able to get a local awareness story in the media. Of course, I will keep you posted.
Take care...
Mile totals for May will follow in the next day or so. I want to make sure every gets a chance to get their miles in first. Oh yeah... I went for a walk this morning. :0) yeah!
I am thrilled to announce that a total of 105 shirts have been ordered. Included in that is the preliminary order that was submitted for a few family members so they could help me get the word out. Here's an email I received last week from my mother-in-law...
"Hi, Kris--I wore my new shirt when I went grocery shopping this morning, and a lady stopped me and told me that she thought the message on the back was just wonderful!!
Pat"
When you get your shirts and you have a chance to be "walking awareness" please share with me any comments you get. If they are good, and why wouldn't they be...I will post them here.
On Monday, June 23rd, I will be making a presentation at PyraMax Bank (my employer) to share information on Myositis. At that time I will have the opportunity to share the t-shirt campaign with my coworkers. I tell you this in case you find others that want to order, another order will be submitted in early July.
I saw the doctor last week. We made an adjustment to the way I will taper my prednisone so that I take it every day instead of every other. This is being done in hopes of not having so much down time/recovery from the zero dose day. The other thing that I wanted to share about this appointment was a new way to describe my disease.
She compared my disease activity to the white hot coals of a fire. They do not look hot but if you touched them you would get burned. In the same manner, my disease is still active. It does not look active but its effects are still there (for now).
The last two days I have had some increases in the pain/discomfort in my hips. Not sure if this is active disease, effects of lower doses of prednisone or something as simple as sleeping on a very hard surface while camping this past weekend. I'm not too excited about it but I am certainly not going to worry about it, just keeping an eye on things.
The last thing I wanted to share with you today is an exciting email I received from the Myositis Association. They forwarded an article about a high school athlete who competed recently in the state WIAA competion. She is from Green Bay and two years ago, after being diagnosed with Dermatomyositis was barely able to make it around the track.
Last week she was competing again. I put out a few emails today to see if she would be interested in campaigning with me and if we might be able to get a local awareness story in the media. Of course, I will keep you posted.
Take care...
Mile totals for May will follow in the next day or so. I want to make sure every gets a chance to get their miles in first. Oh yeah... I went for a walk this morning. :0) yeah!
Subscribe to:
Posts (Atom)