A Tale of Excitement!!
Hi, Trevor, The Tell Tale Dog, here to share another great story of Brenda's life. Before
we go on, some of our readers have been asking about Lil' Biscuit. She is doing well, we
continue to bond quite nicely. She really is a sweetheart and not much trouble at all. Thanks
for asking.
Now, on to our tale. As you know, Brenda has lived with Rheumatoid Arthritis for the past
21 years. Yesterday, April 20th, marked the 11th anniversary of her first injection with the
Biologic drug Enbrel. To help her commemorate this special day were 2 people from The Global Healthy Living Foundation, Seth Ginsberg, Co-Founder and President and Project Manager,
Nam Pak. I will post a couple of links here, so you can check out these wonderful sites.
http://www.GHLF.org and http:/www.CreakyJoints.org
The day after she found out Seth and Nam were coming to Bismarck, she received another
surprise. She was asked to be a guest blogger for the CreakyJoints newsletter. She would
actually have something that she has written published, with my help of course. The blog
post was entitled A Tale Of 21 Years and it tells of her journey of living with RA. Just
follow the link up above and click on CJ guest bloggers and you will see her picture, click
on that and you can read this wonderful story.
We should really mention that Brenda's involvement with CreakyJoints actually started
about 10 years ago, when she was looking for support from other fellow Creakers.
Another thing that was really cool, was yesterday before she started her advocacy work
day, Seth presented her with a CreakyJoints pin, which she will wear with pride.
Anyway, Seth and Nam wanted to come to North Dakota to work with Brenda for 2 very
important reasons. First, they had never been here and the second and very important one
was to bring about the various barriers to health care issues, particularly in relationship to
the switch that Brenda may be facing, when she reaches Medicare age. The part B plan,
where Brenda would have to possibly go some where and take time out of her schedule to
be hooked up and be infused, versus being able to continue to do her own injections in the
comfort of her own home, which has been working out so beautifully for the past 11
years.
Another great concern, although this drug would be less expensive, she is afraid that perhaps,
it wouldn't work as well, as the one that she is currently on now. One thing that would ultimately
happen, the way the laws are now, is that her co-pay for her current drug would skyrocket. Her
feeling on this whole thing is, if it's not broke, don't fix it. It's a complex issue and that is
why Seth and Brenda sat down with various representatives of the Senate and also Congress,
to try and bring to light these barriers, especially in relationship to how this all works.
Another thing that was really striking, was in the first 2 meetings, where someone actually knew
of someone living with RA or had just been recently diagnosed. Brenda took it upon herself
to offer her assistance, by allowing these individuals to contact her, if they wanted to talk or
anything else they may need.
The whole purpose of this day, was for Brenda to become a model advocate for the state of North
Dakota and to reach out to others who are living with RA, as they found out yesterday, there
are many. Another great concern in the state of North Dakota, is that there really are not that
many rheumatologists, as the wait to get into some is very long. We are talking months. When
you are suffering with that much pain, you need to be in close contact with your rheumatologist,
so a game plan can be put in motion, so you can go on and live a productive life.
That is another thing that Brenda brought out in all her meetings with these various individuals,
is that you can live a happy and productive life. Seth and her had a conversation about how
important, it is to stay positive and to have humor. He actually told her, that he liked her sense
of humor.
Another thing before we go on here, is we need to mention Jarrod the videographer who also
made this trip. I got to meet him briefly yesterday, as he took pictures of Brenda and me. It
was also great to meet Seth and Nam. They have been so great to Brenda, working with her
and guiding her through this whole process. Nam is really a great guy and has been so
incredibly kind to Brenda, helping her with computer issues and also with getting ready for
this important day.
Also during these important meetings, going back to how Brenda has really been active in the
arthritis community as of late. She has been involved in several projects through RA Guy
and the Show Us Your Hands! interactive collage, the Show Us Your Hands! commemorative
poster featuring 1,000 beautiful hands and also the Show Us Your Hands! photo book, which
will be available for purchase next month, for National Arthritis Awareness Month. I will
post the link. http://www.showusyourhands.org
RA Guy has truly been an inspiration to her and to many others, who are on this journey
living with RA.
You can check out all the wonderful things that have been going on in the inflammatory
arthritis community. Brenda got involved with all of this at the end of last year, when she
decided that she was going to start being active and spreading awareness for RA instead of
feeling sorry for herself, because of her incredibly tough and sad year she had experienced.
It seemed when she decided to approach this from another perspective, that is when she truly
turned a corner. She not only got involved with the interactive collage, where she sent a
picture of her hand for the first poster, but for the 1,000 hands, she made sure she got a picture
of her other hand as well. She wanted to be fully involved in this great project. She also
applied for the call to submissions for the Show Us Your Hands photo book project. She had
to explain, why her hands were so special to her. Imagine, her surprise when she received
the news, that her story was selected to be featured in the Show Us Your Hands Photo book.
She has been working very closely with RA Guy, as he is her guide with this wonderful project.
He really is a cool person, because he is also allowing Brenda to mention in her story about
also being a brain tumor survivor. That just meant the world to Brenda, you just can't imagine.
Anyway what this project entails, is that she had to write a hands story between 300 and 500
words and also along with that, have someone take pictures of her hands in action, to go along
with the story. She also had to write a short Bio that will also be included in the book. Trevor
here, couldn't be more proud!
Brenda and Seth also did an interview for the local TV station here in Bismarck. Brenda was also
interviewed by The Bismarck Tribune, where she got a chance to again, share her story.
She had a really great time with Seth, Nam, and Jarrod. They brought her bagels from New York.
Now, that is just great in my book. She also had gifts for them as well. She did forget to
tell them that the reason their gift bags were blue, was because that is the awareness color
for arthritis.
Another reason why these guys came to North Dakota, was to do an RA in the workplace
interview, which will be on YouTube, when it is all ready. She saw this on the CreakyJoints
Facebook page and decided this was something she would like to be involved in, not even
having the slightest notion, that they would even consider coming to Bismarck.
This has been an experience that Brenda will not soon forget. It was also a learning experience
in how to conduct yourself during an interview. She found the YouTube one to be the
most challenging, but thankfully you had as many takes as were necessary and there were many.
The guys were really kind, giving her pointers on how to say things. She had never done this
before, so it was just a matter of making it personal for her.
They also had a lot of fun too. They also made her feel at ease. Brenda told me she was not
nervous with doing any of this yesterday. She really enjoyed herself, but was very tired, as it
was a long day, but a very good one.
She wants to thank Seth, Nam and Jarrod for taking the time to make this trip to North Dakota
and hopes to be able to keep in touch.
Well, this is Trevor, The Tell Tale Dog, until next time, wishing you only the best.
we go on, some of our readers have been asking about Lil' Biscuit. She is doing well, we
continue to bond quite nicely. She really is a sweetheart and not much trouble at all. Thanks
for asking.
Now, on to our tale. As you know, Brenda has lived with Rheumatoid Arthritis for the past
21 years. Yesterday, April 20th, marked the 11th anniversary of her first injection with the
Biologic drug Enbrel. To help her commemorate this special day were 2 people from The Global Healthy Living Foundation, Seth Ginsberg, Co-Founder and President and Project Manager,
Nam Pak. I will post a couple of links here, so you can check out these wonderful sites.
http://www.GHLF.org and http:/www.CreakyJoints.org
The day after she found out Seth and Nam were coming to Bismarck, she received another
surprise. She was asked to be a guest blogger for the CreakyJoints newsletter. She would
actually have something that she has written published, with my help of course. The blog
post was entitled A Tale Of 21 Years and it tells of her journey of living with RA. Just
follow the link up above and click on CJ guest bloggers and you will see her picture, click
on that and you can read this wonderful story.
We should really mention that Brenda's involvement with CreakyJoints actually started
about 10 years ago, when she was looking for support from other fellow Creakers.
Another thing that was really cool, was yesterday before she started her advocacy work
day, Seth presented her with a CreakyJoints pin, which she will wear with pride.
Anyway, Seth and Nam wanted to come to North Dakota to work with Brenda for 2 very
important reasons. First, they had never been here and the second and very important one
was to bring about the various barriers to health care issues, particularly in relationship to
the switch that Brenda may be facing, when she reaches Medicare age. The part B plan,
where Brenda would have to possibly go some where and take time out of her schedule to
be hooked up and be infused, versus being able to continue to do her own injections in the
comfort of her own home, which has been working out so beautifully for the past 11
years.
Another great concern, although this drug would be less expensive, she is afraid that perhaps,
it wouldn't work as well, as the one that she is currently on now. One thing that would ultimately
happen, the way the laws are now, is that her co-pay for her current drug would skyrocket. Her
feeling on this whole thing is, if it's not broke, don't fix it. It's a complex issue and that is
why Seth and Brenda sat down with various representatives of the Senate and also Congress,
to try and bring to light these barriers, especially in relationship to how this all works.
Another thing that was really striking, was in the first 2 meetings, where someone actually knew
of someone living with RA or had just been recently diagnosed. Brenda took it upon herself
to offer her assistance, by allowing these individuals to contact her, if they wanted to talk or
anything else they may need.
The whole purpose of this day, was for Brenda to become a model advocate for the state of North
Dakota and to reach out to others who are living with RA, as they found out yesterday, there
are many. Another great concern in the state of North Dakota, is that there really are not that
many rheumatologists, as the wait to get into some is very long. We are talking months. When
you are suffering with that much pain, you need to be in close contact with your rheumatologist,
so a game plan can be put in motion, so you can go on and live a productive life.
That is another thing that Brenda brought out in all her meetings with these various individuals,
is that you can live a happy and productive life. Seth and her had a conversation about how
important, it is to stay positive and to have humor. He actually told her, that he liked her sense
of humor.
Another thing before we go on here, is we need to mention Jarrod the videographer who also
made this trip. I got to meet him briefly yesterday, as he took pictures of Brenda and me. It
was also great to meet Seth and Nam. They have been so great to Brenda, working with her
and guiding her through this whole process. Nam is really a great guy and has been so
incredibly kind to Brenda, helping her with computer issues and also with getting ready for
this important day.
Also during these important meetings, going back to how Brenda has really been active in the
arthritis community as of late. She has been involved in several projects through RA Guy
and the Show Us Your Hands! interactive collage, the Show Us Your Hands! commemorative
poster featuring 1,000 beautiful hands and also the Show Us Your Hands! photo book, which
will be available for purchase next month, for National Arthritis Awareness Month. I will
post the link. http://www.showusyourhands.org
RA Guy has truly been an inspiration to her and to many others, who are on this journey
living with RA.
You can check out all the wonderful things that have been going on in the inflammatory
arthritis community. Brenda got involved with all of this at the end of last year, when she
decided that she was going to start being active and spreading awareness for RA instead of
feeling sorry for herself, because of her incredibly tough and sad year she had experienced.
It seemed when she decided to approach this from another perspective, that is when she truly
turned a corner. She not only got involved with the interactive collage, where she sent a
picture of her hand for the first poster, but for the 1,000 hands, she made sure she got a picture
of her other hand as well. She wanted to be fully involved in this great project. She also
applied for the call to submissions for the Show Us Your Hands photo book project. She had
to explain, why her hands were so special to her. Imagine, her surprise when she received
the news, that her story was selected to be featured in the Show Us Your Hands Photo book.
She has been working very closely with RA Guy, as he is her guide with this wonderful project.
He really is a cool person, because he is also allowing Brenda to mention in her story about
also being a brain tumor survivor. That just meant the world to Brenda, you just can't imagine.
Anyway what this project entails, is that she had to write a hands story between 300 and 500
words and also along with that, have someone take pictures of her hands in action, to go along
with the story. She also had to write a short Bio that will also be included in the book. Trevor
here, couldn't be more proud!
Brenda and Seth also did an interview for the local TV station here in Bismarck. Brenda was also
interviewed by The Bismarck Tribune, where she got a chance to again, share her story.
She had a really great time with Seth, Nam, and Jarrod. They brought her bagels from New York.
Now, that is just great in my book. She also had gifts for them as well. She did forget to
tell them that the reason their gift bags were blue, was because that is the awareness color
for arthritis.
Another reason why these guys came to North Dakota, was to do an RA in the workplace
interview, which will be on YouTube, when it is all ready. She saw this on the CreakyJoints
Facebook page and decided this was something she would like to be involved in, not even
having the slightest notion, that they would even consider coming to Bismarck.
This has been an experience that Brenda will not soon forget. It was also a learning experience
in how to conduct yourself during an interview. She found the YouTube one to be the
most challenging, but thankfully you had as many takes as were necessary and there were many.
The guys were really kind, giving her pointers on how to say things. She had never done this
before, so it was just a matter of making it personal for her.
They also had a lot of fun too. They also made her feel at ease. Brenda told me she was not
nervous with doing any of this yesterday. She really enjoyed herself, but was very tired, as it
was a long day, but a very good one.
She wants to thank Seth, Nam and Jarrod for taking the time to make this trip to North Dakota
and hopes to be able to keep in touch.
Well, this is Trevor, The Tell Tale Dog, until next time, wishing you only the best.
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