Many of you know that I became a patient advocate for Biogen Idec
and the drug Tysabri for many years.
I began my journey as a speaker in the program and last June I switched
to the mentoring program. With running a business it just seemed to fit my
life better but I am really enjoying it more.
I get to really connect with people. I really only share my experience with
Tysabri but it makes me feel so good to be able to help others.
I was told I could go back to the speaking side anytime I want but
I think I am pretty comfortable on the other side. This week I have gotten
4 new mentees. Two a day apart with almost identical names. That
was a challenge to keep their situations straight but I managed.
The other day I got an update from one mentee and a thank you.
Don't get that everyday and that is what makes this program a win win for
both sides.
Thanks for the opportunity BI. I will do my best to make you proud.
Have a great day everybody
Cathy
http://www.themsshoppe.com/
Tell a friend
Showing posts with label Tysabri. Show all posts
Showing posts with label Tysabri. Show all posts
Saturday, November 13, 2010
Sunday, December 13, 2009
A very talented MSer
Here is a picture of Tim submitted by his wife Janet.
Tim has MS and was diagnosed in 2000.
Janet submitted this photo to me to put on my website under
"Community Page" but I am having some difficulties with that so until I figure it out ( it must be an MS thing, haha) I thought I would also share it with my readers.
Ya know how much I love these kind of stories.
Tim built this bookrack for his local MS Support group.
He recently switched to Tysabri and since doing so he has been able to resume past activites like carpentry. He is in the process of remodeling their basement. Wow ! come to my house !
Janet, thanks so much for sending this to me. I will figure out to get it on my website eventually. My brain hurts to much to figure it out right now.
By the way, Tim and Janet are fellow cheeseheads and reside a short distance from me.
Nice to meet you. Next time I am in the neighborhood ( Mr. Rodger's neighborhood)
I will buy you a cup of coffee.
Thanks again. Tim, great work. Love the color red but especially love the T shirt.
Cathy
Tell a Friend !
Tuesday, October 20, 2009
a Cane free day
Today I am challenging myself to go Cane Free.
Of course, I have to use it on the stairs but so far so good.
I have done alot of housework this morning so I'm not sure how much longer I can go before I am completely exhausted.
Just enjoyed a nice cappuccino so I have my energy boost or caffeine punch.
This past weekend inspired me to do the cane free day. See what Biogen Idec and Tysabri do for me.
What a woman can do when she sets her mind to it.
Have a great day eerybody.
Cathy
www.TheMSShoppe.com
Tell a friend !
Of course, I have to use it on the stairs but so far so good.
I have done alot of housework this morning so I'm not sure how much longer I can go before I am completely exhausted.
Just enjoyed a nice cappuccino so I have my energy boost or caffeine punch.
This past weekend inspired me to do the cane free day. See what Biogen Idec and Tysabri do for me.
What a woman can do when she sets her mind to it.
Have a great day eerybody.
Cathy
www.TheMSShoppe.com
Tell a friend !
Monday, October 19, 2009
Tysabri conference
This past weekend I attended the Biogen Idec Patient Advocates conference in Chicago.
To say it was an experience would be an understatement. It was the MOST amazing MS event I have ever attended. To be surrounded by so many positive people and recieve so much support was a thrill.
We had training in perfecting our speeches and presentation skills. Everything was put on video so we could play it back and learn from it. And boy did we learn. Thanks Jeff, you are spectacular.
When someone professional is critiquing your presentation it is so nice to be among people who are equally supportive.
I learned so much and my presentation will be better than ever now.
This was the frst time I gave my speech by memory, no script just a few notes scribbled on a paper. I spoke from the heart and it was amazing.
My confidence level soared thru the roof and I can't wait to give another speech.
We learned how to stand, where to put our arms and what to do with our hands and voices to get our message across.
Thank You Biogen Idec for this amazing event. for your patience and support. For me personally, Sunday morning when I wasn't feeling well and you were all so concerned.
And for everybody trying to fix my cane, which developed MS, while I was there. haha !
The cane lost a foot and nobody in Chicago could find one so we fixed how every man would fix it. Duct Tape !
Made alot of new friends and can't wait til next year.
I am so proud to be affiliated with such a magnificent company, Biogen Idec and especially blessed to be taking Tysabri.
Have an amazing day everybody !
Cathy
www.TheMSShoppe.com
Tell a Friend !
To say it was an experience would be an understatement. It was the MOST amazing MS event I have ever attended. To be surrounded by so many positive people and recieve so much support was a thrill.
We had training in perfecting our speeches and presentation skills. Everything was put on video so we could play it back and learn from it. And boy did we learn. Thanks Jeff, you are spectacular.
When someone professional is critiquing your presentation it is so nice to be among people who are equally supportive.
I learned so much and my presentation will be better than ever now.
This was the frst time I gave my speech by memory, no script just a few notes scribbled on a paper. I spoke from the heart and it was amazing.
My confidence level soared thru the roof and I can't wait to give another speech.
We learned how to stand, where to put our arms and what to do with our hands and voices to get our message across.
Thank You Biogen Idec for this amazing event. for your patience and support. For me personally, Sunday morning when I wasn't feeling well and you were all so concerned.
And for everybody trying to fix my cane, which developed MS, while I was there. haha !
The cane lost a foot and nobody in Chicago could find one so we fixed how every man would fix it. Duct Tape !
Made alot of new friends and can't wait til next year.
I am so proud to be affiliated with such a magnificent company, Biogen Idec and especially blessed to be taking Tysabri.
Have an amazing day everybody !
Cathy
www.TheMSShoppe.com
Tell a Friend !
Thursday, August 13, 2009
Conference Call Day
Yesterday I had 2 conference calls and a sore throat. Great combination !
The first call was with the Multiple Sclerosis Foundation as part of my role as an Ambassador with them.
We talked about speaking, writing speeches, delivering speeches, etc. I stayed pretty quiet during the call because my throat was on fire. I was chugging water and cough drops just to
stay on the call.
I learned alot ( although I give speeches alot) Thanks Kasey and the rest of the group for all your ideas. This will be a fun experience being an Ambassador for them .
They are a great organization. If you haven't checked them out please go to www.msfocus.org.
If you want to read the article about the ambassador program or any other article go to MS Publications, newletters and magazines.
I am honored to be a part of this program.
The second call was for my role as a Tysabri patient advocate. Biogen Idec, the makers of Tysabri, has redesigned a website for MS er's and they wanted our opinion.
Wow ! a drug company that really wants to help their patients. I'm not sure you can say that about alot of drug companies.
I guess thats why when I was asked to share my story within their advocate program I agreed.
I am also honored to be a part of this program.
to check out their site go to www.msactivesource.com
I think their are changes to follow but I like what they have done so far.
Have a great day everybody !
Cathy
www.TheMSShoppe.com
tell a friend !
The first call was with the Multiple Sclerosis Foundation as part of my role as an Ambassador with them.
We talked about speaking, writing speeches, delivering speeches, etc. I stayed pretty quiet during the call because my throat was on fire. I was chugging water and cough drops just to
stay on the call.
I learned alot ( although I give speeches alot) Thanks Kasey and the rest of the group for all your ideas. This will be a fun experience being an Ambassador for them .
They are a great organization. If you haven't checked them out please go to www.msfocus.org.
If you want to read the article about the ambassador program or any other article go to MS Publications, newletters and magazines.
I am honored to be a part of this program.
The second call was for my role as a Tysabri patient advocate. Biogen Idec, the makers of Tysabri, has redesigned a website for MS er's and they wanted our opinion.
Wow ! a drug company that really wants to help their patients. I'm not sure you can say that about alot of drug companies.
I guess thats why when I was asked to share my story within their advocate program I agreed.
I am also honored to be a part of this program.
to check out their site go to www.msactivesource.com
I think their are changes to follow but I like what they have done so far.
Have a great day everybody !
Cathy
www.TheMSShoppe.com
tell a friend !
Monday, August 10, 2009
Tysabri
I just got back from my Tysabri infusion. # whatever I stopped keeping track.
It's working so who really cares what number infusion it is. It's in the 30's.
We had to change my time for today so everything is a little disoriented. I got real hungry during it so I ordered some food to tide me over til I got home.
A couple of very nice ladies joined me in the community room.
After they unplugged me from the IV I had to use the restroom. Imagine that, a person with MS, having all that fluids pumped into me and I had to use the restroom.
So I headed out to the restroom. This morning I chose to just use my cane instead of my walker.
I am half way to the restroom when I hear an ignorant old man say " she is too young to be walking with a cane".
Ok, so if you don't already know I am really self conscious about the way I walk. And although I was really proud of myself for just doing the cane this morning I didn't need to hear someone making fun of the way I walk.
Ok, you ignorant SOB. This is what I really wanted to say to you. FU FU FU . How dare you make a comment about something like that. HOW DARE YOU you ingorant old man.
There I said it, I feel much better. Thanks to the other ladies in the community room for reminding me of his ignorance and supporting my walking efforts and Thank you to Annette, my nurse, who gave me a hug. I think she could tell I was doing everything I could to fight back the tears.
I'm going to let it roll off my shoulders and get on with my day. At least the dogs won't care that I walk "funny"
Have a great day everybody !
Cathy
www.TheMSShoppe.com
tell a friend !
It's working so who really cares what number infusion it is. It's in the 30's.
We had to change my time for today so everything is a little disoriented. I got real hungry during it so I ordered some food to tide me over til I got home.
A couple of very nice ladies joined me in the community room.
After they unplugged me from the IV I had to use the restroom. Imagine that, a person with MS, having all that fluids pumped into me and I had to use the restroom.
So I headed out to the restroom. This morning I chose to just use my cane instead of my walker.
I am half way to the restroom when I hear an ignorant old man say " she is too young to be walking with a cane".
Ok, so if you don't already know I am really self conscious about the way I walk. And although I was really proud of myself for just doing the cane this morning I didn't need to hear someone making fun of the way I walk.
Ok, you ignorant SOB. This is what I really wanted to say to you. FU FU FU . How dare you make a comment about something like that. HOW DARE YOU you ingorant old man.
There I said it, I feel much better. Thanks to the other ladies in the community room for reminding me of his ignorance and supporting my walking efforts and Thank you to Annette, my nurse, who gave me a hug. I think she could tell I was doing everything I could to fight back the tears.
I'm going to let it roll off my shoulders and get on with my day. At least the dogs won't care that I walk "funny"
Have a great day everybody !
Cathy
www.TheMSShoppe.com
tell a friend !
Monday, August 3, 2009
MSFocus
I finally received my copy of MSFocus in the mail today. It's not that it was late but I was incredibly anxious to see it.
The article announcing the MSF Ambassadors was in it so it was fun to see it in print.
I did proof it and my name is spelled correctly ( inside joke, nobody ever spells my name correctly)
In addition to the announcement I am now an Ambassador for the Multiple Sclerosis Foundation my ad for my business also came out today.
In my platform for the Ambassador I reminded people to not go thru this journey of MS alone. I encouraged them to look me up on facebook (and I do mean that) so I have been friended like crazy this week.
I know first hand what it is like to go thru this alone without my family. My husband, his family and the strong friends I have all stood by me. The wimps all ran for the hills.
The biggest dissapointment was obviously my parents. How do you give birth to someone and walk away from them.
I am not a parent to anything but my adorable pups but that doesn't make sense to me.
I have come to terms with it over the years that it is their loss. I am one hell of a great person. Fun and happy and positive. A bit nuts, a bit OCD. I have a real serious side and a "I can't stop giggling side" but I am a human being with living DNA parents who want nothing to do with me and my MS.
To them I say BITE ME. DNA does not make a family. I have plenty of friends who offer me the nurturing I need. My husband and of course, his mom, who I would not have made it this far without.
Thanks mom, I love you so much !
My ad also came out today. Orders ( a good thing), catalog requests, info calls. Just had to plug in my cell because the battery was low.
Mark called earlier from work. All the news stations are hovering at this company. If you are not familiar with what is going on the company he works for is threatening to move the operations to Oklahoma. A non union shop, etc. It's been more than a little stressful here in town. They are the biggest employer here.
Personally, I am okay with the OK state. Don't get me started I'll burst into all the songs from the musical Oklahoma. It's selling my house that concerns me. It's also coordinating my Tysabri infusion so I don't miss a dose. I am extremely organized person so I think I can pull it off. Moving the business would be easy as well.
Oh, one more thing. I was also in this month's issue of New Mobility. You can read the article newmobility.com. Written by my friend Jen ( thanks a bunch) it talks about my Tysabri advocacy.
My sister in law suggested I get a publicist to handle all this publicity. LOL
Autographs are free, however donations will be accepted and donated to MSF.
Have a great sunny Vitamin D filled day !
Cathy
www.TheMSShoppe.com
Tell a friend !
The article announcing the MSF Ambassadors was in it so it was fun to see it in print.
I did proof it and my name is spelled correctly ( inside joke, nobody ever spells my name correctly)
In addition to the announcement I am now an Ambassador for the Multiple Sclerosis Foundation my ad for my business also came out today.
In my platform for the Ambassador I reminded people to not go thru this journey of MS alone. I encouraged them to look me up on facebook (and I do mean that) so I have been friended like crazy this week.
I know first hand what it is like to go thru this alone without my family. My husband, his family and the strong friends I have all stood by me. The wimps all ran for the hills.
The biggest dissapointment was obviously my parents. How do you give birth to someone and walk away from them.
I am not a parent to anything but my adorable pups but that doesn't make sense to me.
I have come to terms with it over the years that it is their loss. I am one hell of a great person. Fun and happy and positive. A bit nuts, a bit OCD. I have a real serious side and a "I can't stop giggling side" but I am a human being with living DNA parents who want nothing to do with me and my MS.
To them I say BITE ME. DNA does not make a family. I have plenty of friends who offer me the nurturing I need. My husband and of course, his mom, who I would not have made it this far without.
Thanks mom, I love you so much !
My ad also came out today. Orders ( a good thing), catalog requests, info calls. Just had to plug in my cell because the battery was low.
Mark called earlier from work. All the news stations are hovering at this company. If you are not familiar with what is going on the company he works for is threatening to move the operations to Oklahoma. A non union shop, etc. It's been more than a little stressful here in town. They are the biggest employer here.
Personally, I am okay with the OK state. Don't get me started I'll burst into all the songs from the musical Oklahoma. It's selling my house that concerns me. It's also coordinating my Tysabri infusion so I don't miss a dose. I am extremely organized person so I think I can pull it off. Moving the business would be easy as well.
Oh, one more thing. I was also in this month's issue of New Mobility. You can read the article newmobility.com. Written by my friend Jen ( thanks a bunch) it talks about my Tysabri advocacy.
My sister in law suggested I get a publicist to handle all this publicity. LOL
Autographs are free, however donations will be accepted and donated to MSF.
Have a great sunny Vitamin D filled day !
Cathy
www.TheMSShoppe.com
Tell a friend !
Monday, June 15, 2009
Tysabri day and a whole lot more
Today was my Tysabri day. I know I probably should know the infusion # I am on but I don't.
It seems meaningless to read " I had infusion # whatever today". Who the heck cares what number you are on as long as it is still working.
I really was looking forward to my Tysabri today because I knew with everything I have been going thru the past week I would be feeling better in no time.
I love this drug. They were so busy there this morning. One person was late, one person was 45 minutes early. What ever happened to appts? 9:00 means 9:00.
Before I went to my Tysabri infusion I decided to call my neuro and let him know how I have been feeling. How awful the weekend was and see how he felt about me going back to the dose I was on of muscle relaxers.
I called his office at 8:20, Mark was going to pick me up at 8:45. My neuro called back at 8:30 just ten minutes after I called.
We talked and I shared my awful weekend with him. Before I could even ask he suggested I increase the dose. Yeah !
I can't wait til tomorrow to feel better. He said it will take some time to make me feel better but he was okay with increasing the dose.
I don't think I ll be feeling much better for my NMSS lunch on Wednesday but I will it give it my best.
I am really tired today. When I came home from Tysabri I wanted to wash my hair so I jumped in the shower and blew my naturally curly hair straight. It feels like it is going to rain at any minute with is making me even more tired.
I collected the trash, took the dogs out, did some laundry, made the bed. The usual stuff.
Next I'll start dinner, take the dogs out again, feed the dogs, answer some emails, fill some orders and so on.
I can't find the phone number of the woman at Macy's who I thought would resolve this problem. I should have known they wouldn't do what they said they would do.
Have a great Day everybody. Smile _ It makes people wonder what you are up to. HAHA
Cathy
www.TheMSShoppe.com
It seems meaningless to read " I had infusion # whatever today". Who the heck cares what number you are on as long as it is still working.
I really was looking forward to my Tysabri today because I knew with everything I have been going thru the past week I would be feeling better in no time.
I love this drug. They were so busy there this morning. One person was late, one person was 45 minutes early. What ever happened to appts? 9:00 means 9:00.
Before I went to my Tysabri infusion I decided to call my neuro and let him know how I have been feeling. How awful the weekend was and see how he felt about me going back to the dose I was on of muscle relaxers.
I called his office at 8:20, Mark was going to pick me up at 8:45. My neuro called back at 8:30 just ten minutes after I called.
We talked and I shared my awful weekend with him. Before I could even ask he suggested I increase the dose. Yeah !
I can't wait til tomorrow to feel better. He said it will take some time to make me feel better but he was okay with increasing the dose.
I don't think I ll be feeling much better for my NMSS lunch on Wednesday but I will it give it my best.
I am really tired today. When I came home from Tysabri I wanted to wash my hair so I jumped in the shower and blew my naturally curly hair straight. It feels like it is going to rain at any minute with is making me even more tired.
I collected the trash, took the dogs out, did some laundry, made the bed. The usual stuff.
Next I'll start dinner, take the dogs out again, feed the dogs, answer some emails, fill some orders and so on.
I can't find the phone number of the woman at Macy's who I thought would resolve this problem. I should have known they wouldn't do what they said they would do.
Have a great Day everybody. Smile _ It makes people wonder what you are up to. HAHA
Cathy
www.TheMSShoppe.com
Monday, May 18, 2009
Tysabri
Today was my Tysabri infusion. I always go in the mornings and today I had to go at 11:00 am. It totally screwed up my day. Although it was nice to not have to rush out the house early this morning I feel like I wasted a day. Mark was a little bit late to work though if you know what I mean.
Can't seem to get my groove going. Came home and had to empty the trash, laundry, make dinner, the bed, etc. The list goes on.
Had a bunch of stuff I wanted to add to my website but I can't think my way thru that now. That is a morning project. I'm much clearer in the mornings.
So, tomorrow is our wrap up meeting for the MS Walk. We FINALLY got a reminder email from the person who headed up the committee. Last week I didn't even know about. Nobody got an original email so a reminder was pretty lame.
Next year, we need some change in leadership. Someone who gives a damn and isn't a lazy ass.
We all know how I feel about Lazy people. Someone who doesn't take credit for stuff they didn't do.
I was raised by the laziest people on the face of the earth. And I am glad I didn't get that gene.
Mark has been going to the post office almost everyday with orders for me. Things have been really busy. Yeah ! Next week should be interesting when he is in Sweden. I'll be calling everyone I know for a ride. LOL
Thanks everybody for voting for the shirt saying. And Thanks to everybody who joined my business page on Facebook.
This is all a new experience for us and it is exciting. The Facebook for dummies book I bought has definitely paid off.
Have a great day everybody.
Cathy
www.TheMSShoppe.com
Tell a Frend !
Can't seem to get my groove going. Came home and had to empty the trash, laundry, make dinner, the bed, etc. The list goes on.
Had a bunch of stuff I wanted to add to my website but I can't think my way thru that now. That is a morning project. I'm much clearer in the mornings.
So, tomorrow is our wrap up meeting for the MS Walk. We FINALLY got a reminder email from the person who headed up the committee. Last week I didn't even know about. Nobody got an original email so a reminder was pretty lame.
Next year, we need some change in leadership. Someone who gives a damn and isn't a lazy ass.
We all know how I feel about Lazy people. Someone who doesn't take credit for stuff they didn't do.
I was raised by the laziest people on the face of the earth. And I am glad I didn't get that gene.
Mark has been going to the post office almost everyday with orders for me. Things have been really busy. Yeah ! Next week should be interesting when he is in Sweden. I'll be calling everyone I know for a ride. LOL
Thanks everybody for voting for the shirt saying. And Thanks to everybody who joined my business page on Facebook.
This is all a new experience for us and it is exciting. The Facebook for dummies book I bought has definitely paid off.
Have a great day everybody.
Cathy
www.TheMSShoppe.com
Tell a Frend !
Thursday, April 23, 2009
My 15 minutes of fame..
Today I got my 15 minutes of fame as they say, however, I think it was more like 5 minutes of nerves.
Today I did the phone interview with a local radio station Sunny 97.7 to help promote our MS Walk here in town.
I was asked on Monday if I could set up a phone interview with a radio station some time this week. A little short notice but once again I pulled it off.
It was a nice short interview about my struggle with MS, the change in location for this year's walk, and what MS is.
I was honored to be asked to do however I was a nervous wreck. That in itself makes no sense to me because I have been giving speeches in my professional life for a long time and since I became a patient advocate for Tysabri I have been speaking all over the State of Wisconsin.
Whatever the reason, I was really feeling the nerves.
It went well and I am really glad it is over. Still have a lot to do for my business for the walk but just about everything else is done. Yeah !
Cathy
www.TheMSShoppe.com
Today I did the phone interview with a local radio station Sunny 97.7 to help promote our MS Walk here in town.
I was asked on Monday if I could set up a phone interview with a radio station some time this week. A little short notice but once again I pulled it off.
It was a nice short interview about my struggle with MS, the change in location for this year's walk, and what MS is.
I was honored to be asked to do however I was a nervous wreck. That in itself makes no sense to me because I have been giving speeches in my professional life for a long time and since I became a patient advocate for Tysabri I have been speaking all over the State of Wisconsin.
Whatever the reason, I was really feeling the nerves.
It went well and I am really glad it is over. Still have a lot to do for my business for the walk but just about everything else is done. Yeah !
Cathy
www.TheMSShoppe.com
Tuesday, April 21, 2009
Tysabri done for the month
Yesterday was my Tysabri day. Boy with everything I have going on I reallllllly needed my Tysabri fix.
Felt energized when I got home but then my infamous stomach problems kicked in. Not related to the Tysabri infusion but a "perk" of my MS. So I got very little done after I came home other than spending time in the bathroom.
Later in the evening I started to experience vertigo problems. Wow, it's been a long time since I had to deal with a spinning room. I think I need to cut my activities way back. My body is talking to me and I better listen up.
I dropped off a Thank you note at my physical therapists while I was at the hospital. They got together and made a donation to my MS Walk team. I was so excited and touched when they called and told me. It means so much to Mark and I that we have such a wonderful support system.
Still nothing in the way of support from my family. But I don't expect much from them anymore. It is just really hard this year because my dad told everyone they were going to support the MSWalk and basically they lied. Surprise surprise. Anybody who knows the pathetic crew knew better than to believe anything that comes out of their mouths.
I am trying to do a last minute interview with a radio station to help promote the walk and our last MS Walk meeting is tonight. Did I mention that it snowed last night and this morning???
We might have to rename our MS Walk to the MS tromp thru the snow event !!
Feeling better today. The stomach problems have subsided. Not completely gone away but getting better. At least the room isn't spinning as fast as it was last night.
I'm going to put some music on and make some bracelets for the MS Walk. That will relax me a bit.
The dogs are snoring ( too much fun in the snow this morning). They are wiped out sometimes I would love to be a dog. Eat, sleep, poop,sleep some more, have someone else make your bed.
I want to be reincarnated as a sheltie when I die.
Cathy
www.TheMSShoppe.com
Felt energized when I got home but then my infamous stomach problems kicked in. Not related to the Tysabri infusion but a "perk" of my MS. So I got very little done after I came home other than spending time in the bathroom.
Later in the evening I started to experience vertigo problems. Wow, it's been a long time since I had to deal with a spinning room. I think I need to cut my activities way back. My body is talking to me and I better listen up.
I dropped off a Thank you note at my physical therapists while I was at the hospital. They got together and made a donation to my MS Walk team. I was so excited and touched when they called and told me. It means so much to Mark and I that we have such a wonderful support system.
Still nothing in the way of support from my family. But I don't expect much from them anymore. It is just really hard this year because my dad told everyone they were going to support the MSWalk and basically they lied. Surprise surprise. Anybody who knows the pathetic crew knew better than to believe anything that comes out of their mouths.
I am trying to do a last minute interview with a radio station to help promote the walk and our last MS Walk meeting is tonight. Did I mention that it snowed last night and this morning???
We might have to rename our MS Walk to the MS tromp thru the snow event !!
Feeling better today. The stomach problems have subsided. Not completely gone away but getting better. At least the room isn't spinning as fast as it was last night.
I'm going to put some music on and make some bracelets for the MS Walk. That will relax me a bit.
The dogs are snoring ( too much fun in the snow this morning). They are wiped out sometimes I would love to be a dog. Eat, sleep, poop,sleep some more, have someone else make your bed.
I want to be reincarnated as a sheltie when I die.
Cathy
www.TheMSShoppe.com
Friday, April 3, 2009
Tysabri Patient Education Program
Last night I gave my speech for a patient education program sponsored by Biogen Idec, the makers of the drug Tysabri.
It probably was one of the best events I have attended. It was the first time I gave my " new and somewhat tweaked" version of my speech. I like the changes I made to it. It helps set the stage for how things were before I began Tysabri.
It's no secret that I have had tremendous success with this drug. I am very proud of myself and my success.
As we all know success doesn't include a "magic pill".Or in this case an IV once a month.
It takes alot of hard work and the right attitude. ( ok, stop with the attitude jokes) Plus taking care of yourself. Eating right, exercise. Nothing is going to have success unless you can formulate a plan to include all of these factors.
I work really really hard at doing these things. Although I did eat a big cookie last night and then stole one for the drive home LOL
This event was alot of fun for me because I knew so many people there. They brought their friends and so on. I usually don't like to speak in front of friends.
Thanks for behaving yourself and not heckling me. I know some of you were dying to do it.
Thanks for not making funny faces at me while I was speaking. I know a few of you probably wanted to that to.
But most of all, thanks for being there. As you heard from my speech I have no family support
so friends are important to me.
I met so many wonderful people. In fact I had to duck out to use the restroom ( surprise, surpise) and when I returned people were waiting at the door for me.
I am sincere about my offer to listen. So to those of you who had a private moment with me, please call me. It'll be okay. We'll get you thru this together.
Hopefully, I'll be speaking for Biogen Idec again soon and will have the chance to meet others on Tysabri or considering Tysabri.
Cathy
http://www.themsshoppe.com/
Tell a friend !
It probably was one of the best events I have attended. It was the first time I gave my " new and somewhat tweaked" version of my speech. I like the changes I made to it. It helps set the stage for how things were before I began Tysabri.
It's no secret that I have had tremendous success with this drug. I am very proud of myself and my success.
As we all know success doesn't include a "magic pill".Or in this case an IV once a month.
It takes alot of hard work and the right attitude. ( ok, stop with the attitude jokes) Plus taking care of yourself. Eating right, exercise. Nothing is going to have success unless you can formulate a plan to include all of these factors.
I work really really hard at doing these things. Although I did eat a big cookie last night and then stole one for the drive home LOL
This event was alot of fun for me because I knew so many people there. They brought their friends and so on. I usually don't like to speak in front of friends.
Thanks for behaving yourself and not heckling me. I know some of you were dying to do it.
Thanks for not making funny faces at me while I was speaking. I know a few of you probably wanted to that to.
But most of all, thanks for being there. As you heard from my speech I have no family support
so friends are important to me.
I met so many wonderful people. In fact I had to duck out to use the restroom ( surprise, surpise) and when I returned people were waiting at the door for me.
I am sincere about my offer to listen. So to those of you who had a private moment with me, please call me. It'll be okay. We'll get you thru this together.
Hopefully, I'll be speaking for Biogen Idec again soon and will have the chance to meet others on Tysabri or considering Tysabri.
Cathy
http://www.themsshoppe.com/
Tell a friend !
Wednesday, April 1, 2009
My Tysabri Story
Tomorrow I am giving my speech at a patient education program sponsored by Biogen Idec, the makers of the drug Tysabri.
I have been on Tysabri for 2 years and my body has gone thru many changes. All for the positive.
A couple of things I would like to clear up though. I was NEVER wheelchair bound. I don't ever want to mislead people.
I live in a two story home. A home we purchased two months before my diagnosis. They thought it was a neck problem that would go away with surgery.
I was walking with a cane before my diagnosis and crashed and burned shortly thereafter. My life sucked very quickly. I lost my job, couldn't function like I used to ( too many examples but you all know what I am talking about). I NEVER left my home with the use of my wheelchair because I always fell or was completely exhausted. I had two years of this and it kept getting worse. I could hardly cut my food. My husabnd had to do that for me.
Once I began Tysabri my body began changing and I was able to function better. After six months of being on Tysabri I walked into the hospital for the first time in 3 years. A huge thing. My wheelchair now sits in my living room collecting dust. I refuse to dust it.
I went snow skiing for the first time in my life STANDING in January 2008. I travel by myself and I stand while cooking dinner every night. Right now I am training to do the MS Walk in 2010. It's 3 miles and I am determined to do it. I have an entire year to train.
Today I rode my exercise bike 3 miles. The most I have ever ridden. I only got the bike in December and the first time I sat on it my husband had to get my legs started. There is no way I can say Tysabri is not responsible for this. But it is also alot of hardwork and determination on my part. I am not going down without a fight.
I realize I may not be able to get out of bed tomorrow. Welcome to the world of MS. I know I may have to use that wheelchair again.
Right now, I am loving life. I've been rock bottom and I am fighting back.
If anybody has questions about my progress with Tysabri, I would more than happy to share all the details. I might even share my speech with you ( as long as you don't mimic me as I give it) LOL
I am so in love with Tysabri for what it has done for me. All drugs have risks. Betaseron caused my liver to misfunction. Copaxone screwed up my kidneys.
I was a pedestrian in a crosswalk hit by a car .( And the son of a bitch left me there ) There are risks in life.
I am delighted I canshare my story with people considering a change in meds. But, people, the decision, is your and yours alone. Please don't let anyone influence you in any way, even my story.
Cathy
www.TheMSShoppe.com
Tell a friend !
I have been on Tysabri for 2 years and my body has gone thru many changes. All for the positive.
A couple of things I would like to clear up though. I was NEVER wheelchair bound. I don't ever want to mislead people.
I live in a two story home. A home we purchased two months before my diagnosis. They thought it was a neck problem that would go away with surgery.
I was walking with a cane before my diagnosis and crashed and burned shortly thereafter. My life sucked very quickly. I lost my job, couldn't function like I used to ( too many examples but you all know what I am talking about). I NEVER left my home with the use of my wheelchair because I always fell or was completely exhausted. I had two years of this and it kept getting worse. I could hardly cut my food. My husabnd had to do that for me.
Once I began Tysabri my body began changing and I was able to function better. After six months of being on Tysabri I walked into the hospital for the first time in 3 years. A huge thing. My wheelchair now sits in my living room collecting dust. I refuse to dust it.
I went snow skiing for the first time in my life STANDING in January 2008. I travel by myself and I stand while cooking dinner every night. Right now I am training to do the MS Walk in 2010. It's 3 miles and I am determined to do it. I have an entire year to train.
Today I rode my exercise bike 3 miles. The most I have ever ridden. I only got the bike in December and the first time I sat on it my husband had to get my legs started. There is no way I can say Tysabri is not responsible for this. But it is also alot of hardwork and determination on my part. I am not going down without a fight.
I realize I may not be able to get out of bed tomorrow. Welcome to the world of MS. I know I may have to use that wheelchair again.
Right now, I am loving life. I've been rock bottom and I am fighting back.
If anybody has questions about my progress with Tysabri, I would more than happy to share all the details. I might even share my speech with you ( as long as you don't mimic me as I give it) LOL
I am so in love with Tysabri for what it has done for me. All drugs have risks. Betaseron caused my liver to misfunction. Copaxone screwed up my kidneys.
I was a pedestrian in a crosswalk hit by a car .( And the son of a bitch left me there ) There are risks in life.
I am delighted I canshare my story with people considering a change in meds. But, people, the decision, is your and yours alone. Please don't let anyone influence you in any way, even my story.
Cathy
www.TheMSShoppe.com
Tell a friend !
Monday, March 23, 2009
Tysabri day, oh yeah !
Today was my Tysabri infusion. I know I must be nuts but I really look forward to it.
Usually the week before my Tysabri infusion I drag a bit but you can see from my previous blog entry that Mark and I went for a walk on Sunday.I also went 2 miles on exercise bike Friday night.
I really look forward to my infusion because I know I'm going to have a great day. I love the hospital where I have it done and it is a fun atmosphere. I always meet someone and we talk.
Today Mark left for Europe so he dropped me off an hour early. I wasn't quite awake so I sat and did Sudoku. You know I'm hooked on my sudoku. It's keeps my brain going. Maybe it's because I went to school to become an accountant and I like numbers.
They were running behind ( so not like them) which means someone was probably late to their appointment and the rest of the day ofthe day was off.
I went for a walk because I had some time and because I was wearing my pedometer and wanted to add to my step total. I think I have become obsessed.
The handi van brought me home ( albeit late as usual) and when I arrived home I was petrified that Ripley was going to greet me covered on mud. It had been raining all morning. He greeted me with a big smile and lots of sloppy kisses. Noelle did the same.
I talked to Mark briefly on the phone and we will talk again tomorrow morning my time when he arrives in Belgium. Europe trips are always the hardest on me because of the time difference. 7 hours. We often are so tired that we get confused who is ahead of whom. I thin kwe have both
called each other at ridiculous times. Oh well.
So 4 weeks from now I will go back for nest Tysabri fix. Yeah !
I can't tell you how much I love this med.
Cathy
http://www.themsshoppe.com/
Usually the week before my Tysabri infusion I drag a bit but you can see from my previous blog entry that Mark and I went for a walk on Sunday.I also went 2 miles on exercise bike Friday night.
I really look forward to my infusion because I know I'm going to have a great day. I love the hospital where I have it done and it is a fun atmosphere. I always meet someone and we talk.
Today Mark left for Europe so he dropped me off an hour early. I wasn't quite awake so I sat and did Sudoku. You know I'm hooked on my sudoku. It's keeps my brain going. Maybe it's because I went to school to become an accountant and I like numbers.
They were running behind ( so not like them) which means someone was probably late to their appointment and the rest of the day ofthe day was off.
I went for a walk because I had some time and because I was wearing my pedometer and wanted to add to my step total. I think I have become obsessed.
The handi van brought me home ( albeit late as usual) and when I arrived home I was petrified that Ripley was going to greet me covered on mud. It had been raining all morning. He greeted me with a big smile and lots of sloppy kisses. Noelle did the same.
I talked to Mark briefly on the phone and we will talk again tomorrow morning my time when he arrives in Belgium. Europe trips are always the hardest on me because of the time difference. 7 hours. We often are so tired that we get confused who is ahead of whom. I thin kwe have both
called each other at ridiculous times. Oh well.
So 4 weeks from now I will go back for nest Tysabri fix. Yeah !
I can't tell you how much I love this med.
Cathy
http://www.themsshoppe.com/
Friday, March 20, 2009
Tysabri advocate
My "prep" session went well this morning. I was so afraid they would want to change my speech just two short weeks prior to my next event.
I was pleasantly surprised they really liked my speech and had only a few minor suggestions on tweaking it.
I'm okay with their suggestions and I will make the changes by the next call.
I often forget I'm the only one who knows how I used to be. So when I give my speech all they see is a person " who doesn't look very sick".
I do use my walker when I go to these events because I'm not comfortable without it at this point.
When I am in a writing mood I'll rework my speech. Right now, I have too much other stuff going on to relax and get " in the moment" to rewrite a speech.
I am looking forward to this event and if any of you are local please come. Stop by my website for the info and how to register. I feel like I will have my "posse" there because I have about 6 people who are coming to the event after meeting me at various events or are my friends who might be interested in trying Tysabri.
Try it you'll like it. Ok, I'm being silly. I'm in one of those silly moods. Now, what is it my former support group used to say about me.
Oh, I remember " I'm too perky". And you all know what I said. Email me if you need the exact verbage.
Have a great weekend . Hopefully we'll get some sun.
I made the decision recently to do the MS Walk in 2010 so if you see me around the neighborhood wave. I'll be walking the streets. haha!
Cathy
www.TheMSShoppe.com
I was pleasantly surprised they really liked my speech and had only a few minor suggestions on tweaking it.
I'm okay with their suggestions and I will make the changes by the next call.
I often forget I'm the only one who knows how I used to be. So when I give my speech all they see is a person " who doesn't look very sick".
I do use my walker when I go to these events because I'm not comfortable without it at this point.
When I am in a writing mood I'll rework my speech. Right now, I have too much other stuff going on to relax and get " in the moment" to rewrite a speech.
I am looking forward to this event and if any of you are local please come. Stop by my website for the info and how to register. I feel like I will have my "posse" there because I have about 6 people who are coming to the event after meeting me at various events or are my friends who might be interested in trying Tysabri.
Try it you'll like it. Ok, I'm being silly. I'm in one of those silly moods. Now, what is it my former support group used to say about me.
Oh, I remember " I'm too perky". And you all know what I said. Email me if you need the exact verbage.
Have a great weekend . Hopefully we'll get some sun.
I made the decision recently to do the MS Walk in 2010 so if you see me around the neighborhood wave. I'll be walking the streets. haha!
Cathy
www.TheMSShoppe.com
Tuesday, February 24, 2009
Dina breaks the record !
Congratulations Dina.. We are sooo proud of you!
Dina, like myself, is an advocate for Tysabri.
Dina Mishev was in the midst of setting a world record when she made an unusual request: eight double cheeseburgers with Big Mac sauce from McDonald’s.Turns out, she only ate two.
But that was enough to fuel her through a remarkable feat.Mishev, of Jackson, set the world record for ascending the most vertical feet by a female skier in a day Sunday when she won the 24 Hours of Sunlight at Sunlight Mountain Resort in Glenwood Springs, Colo.Mishev, 34, skinned up 34,500 vertical feet in 25 hours, 13 minutes and 5 seconds by completing 23 laps.
The previous world record was 32,000 vertical feet.The ski race entailed skiing uphill and downhill as many times as possible in 24 hours (if a participant started a lap before the 24 hours was up, she was allowed to finish it). Mishev was still in disbelief Monday after returning to Jackson.“I don’t think it has set in yet,” Mishev said. “I was focused on this race for so long, and training for so long, it hasn’t even dawned on me that Valentine’s Day is this weekend, or spring is on the way, or biking season is near.
It’s been ruling my life for so long. I can have it back now.”Mishev has been an inspiration to many after her multiple sclerosis was diagnosed in 2006. She has been determined to remain extremely active.Mishev said she had been training for the 24 Hours of Sunlight for months by doing “incessant laps on Snow King.” She had trained so hard she actually entered the event with a little too much bravado.“I was overly confident,” she said. “It was a lot harder than I thought it would be. That’s why it hasn’t sunk in yet.
My goal was to do 25 laps. I didn’t reach what my goal really was.”But her feat is remarkable nonetheless. One of the more interesting moments of the race came during lap six, when Mishev asked her brother to make a run to McDonald’s to get her eight double cheeseburgers. She only ate two.“Around lap 18, I couldn’t eat solid food anymore,” she said. “I just went to some liquids for some calories.”Mishev began her final lap just before the 24-hour mark, and turned it into a celebration.
She was joined on the final lap by her friend, Kelly Biscombe, and a personal disc jockey.An employee at Sunlight Mountain Resort learned that one of Mishev’s favorite songs is Survivor’s “Eye of the Tiger.”
The employee then followed Mishev on the final lap, blaring the song from a boom box.“I turned the last lap into a party,” Mishev said.Mishev is hoping the significance of her feat will be realized as time passes.“It was so much fun,” she said. “I was training so long for it. Either it hasn’t sunk in yet, or it was anticlimactic. I think it was the former.”
Dina, like myself, is an advocate for Tysabri.
Dina Mishev was in the midst of setting a world record when she made an unusual request: eight double cheeseburgers with Big Mac sauce from McDonald’s.Turns out, she only ate two.
But that was enough to fuel her through a remarkable feat.Mishev, of Jackson, set the world record for ascending the most vertical feet by a female skier in a day Sunday when she won the 24 Hours of Sunlight at Sunlight Mountain Resort in Glenwood Springs, Colo.Mishev, 34, skinned up 34,500 vertical feet in 25 hours, 13 minutes and 5 seconds by completing 23 laps.
The previous world record was 32,000 vertical feet.The ski race entailed skiing uphill and downhill as many times as possible in 24 hours (if a participant started a lap before the 24 hours was up, she was allowed to finish it). Mishev was still in disbelief Monday after returning to Jackson.“I don’t think it has set in yet,” Mishev said. “I was focused on this race for so long, and training for so long, it hasn’t even dawned on me that Valentine’s Day is this weekend, or spring is on the way, or biking season is near.
It’s been ruling my life for so long. I can have it back now.”Mishev has been an inspiration to many after her multiple sclerosis was diagnosed in 2006. She has been determined to remain extremely active.Mishev said she had been training for the 24 Hours of Sunlight for months by doing “incessant laps on Snow King.” She had trained so hard she actually entered the event with a little too much bravado.“I was overly confident,” she said. “It was a lot harder than I thought it would be. That’s why it hasn’t sunk in yet.
My goal was to do 25 laps. I didn’t reach what my goal really was.”But her feat is remarkable nonetheless. One of the more interesting moments of the race came during lap six, when Mishev asked her brother to make a run to McDonald’s to get her eight double cheeseburgers. She only ate two.“Around lap 18, I couldn’t eat solid food anymore,” she said. “I just went to some liquids for some calories.”Mishev began her final lap just before the 24-hour mark, and turned it into a celebration.
She was joined on the final lap by her friend, Kelly Biscombe, and a personal disc jockey.An employee at Sunlight Mountain Resort learned that one of Mishev’s favorite songs is Survivor’s “Eye of the Tiger.”
The employee then followed Mishev on the final lap, blaring the song from a boom box.“I turned the last lap into a party,” Mishev said.Mishev is hoping the significance of her feat will be realized as time passes.“It was so much fun,” she said. “I was training so long for it. Either it hasn’t sunk in yet, or it was anticlimactic. I think it was the former.”
Tysabri Journey
Yesterday was my Tysabri infusion. All went well but I definitely felt I needed my fix.
Usually there are other women who get their Tysabri the same time as I do but I think we all had a scheduling conflict. A nice man I have seen several times before was there so we chatted some. President Obama had a new conference on CNN so we watched that and those kinds of things always spark a lively conversation.
It was a good conversation this time with intelligent and educated poeple which is alway better for me. I can't discuss things with the equivalent of a lightbulb. It was a nice conversation
and discussion.
After my Tysabri, I had a few errands to run in the hospital so I set off. Mark gave me an hour so he could pick me up on his lunch.
First, I had to go to my neuro's office. My long term disablilty policy is always updating information. They are the biggest waste of paper. So I dropped the papers with his office, paid $6.00 to have them fill out the form and wrote a note to call me when it is done so I send all the info back together.
Then I went up a floor to my co-facilitator's office. I heard someone had dropped something off there for me. She was with patients so I left my card and I will call her later.
Then I stopped by physical therapy. They were somewhat surprised by the fact that I was walking and walking so well. I left them info on the MS Walk.I'm hoping they will have a team or sponsor Mark and I. It was good to see them. They are really positive and I think I shocked them by walking in.
Mark picked me up about 11:30 and we went to grab some lunch. Had a sub sandwich for lunch but couldn't eat the whole thing. Just too big.
He then dropped me off so I could get my nails and hair done. I arranged both appointments the same day on purpose. I got done early and just hung out. My friend owns it so it is a nice place to relax ( incase the pampering I had just endured wasn't enough) Her waiting area could be in my home.
My phone kept ringing off the hook yesterday so I apologize to people who called who I haven't got back to yet. I will later today.
I have an advocates conference call today from the Biogen Idec about Tysabri.
I didn't sleep very well last night and feel very crumpled up. I have so much to do so I will just make small steps forward and accomplish what I can. Mark is headed to Sacramento.
Usually there are other women who get their Tysabri the same time as I do but I think we all had a scheduling conflict. A nice man I have seen several times before was there so we chatted some. President Obama had a new conference on CNN so we watched that and those kinds of things always spark a lively conversation.
It was a good conversation this time with intelligent and educated poeple which is alway better for me. I can't discuss things with the equivalent of a lightbulb. It was a nice conversation
and discussion.
After my Tysabri, I had a few errands to run in the hospital so I set off. Mark gave me an hour so he could pick me up on his lunch.
First, I had to go to my neuro's office. My long term disablilty policy is always updating information. They are the biggest waste of paper. So I dropped the papers with his office, paid $6.00 to have them fill out the form and wrote a note to call me when it is done so I send all the info back together.
Then I went up a floor to my co-facilitator's office. I heard someone had dropped something off there for me. She was with patients so I left my card and I will call her later.
Then I stopped by physical therapy. They were somewhat surprised by the fact that I was walking and walking so well. I left them info on the MS Walk.I'm hoping they will have a team or sponsor Mark and I. It was good to see them. They are really positive and I think I shocked them by walking in.
Mark picked me up about 11:30 and we went to grab some lunch. Had a sub sandwich for lunch but couldn't eat the whole thing. Just too big.
He then dropped me off so I could get my nails and hair done. I arranged both appointments the same day on purpose. I got done early and just hung out. My friend owns it so it is a nice place to relax ( incase the pampering I had just endured wasn't enough) Her waiting area could be in my home.
My phone kept ringing off the hook yesterday so I apologize to people who called who I haven't got back to yet. I will later today.
I have an advocates conference call today from the Biogen Idec about Tysabri.
I didn't sleep very well last night and feel very crumpled up. I have so much to do so I will just make small steps forward and accomplish what I can. Mark is headed to Sacramento.
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