Thursday, April 23, 2009

OK Senate Saves the Day!

Thank you, Oklahoma State Senate, for sustaining Gov. Henry's veto! Now I do not have to be embarrassed to say that I am from Oklahoma!

The Chambers of Commerce of both Oklahoma City and Tulsa lobbied for the veto, as well as the OK Chapter of NMSS and the Juvenile Diabetes Foundation.

I found out about this legislation last weekend at an MS seminar in OKC, hosted by the manufacturers of Copaxone. The speaker is the only listed MS specialist in OK, Dr. Gabriel Pardo, an ophtho-neurologist (see a video of him here). I'll write more about the seminar in a later post. Dr. Pardo urged all of us to contact our legislators to make sure this did not pass. So, it's his fault that my blood pressure went on a roller-coaster ride today!

I probably should get some of the work for which I'm paid done.

Peace,
Kelley

Letter to Oklahoma Legislators

I am beside myself about some legislation here in the state of Oklahoma. It is a ban on all embryonic stem cell research that makes it a criminal offense. Thankfully, the Governor vetoed the bill yesterday. However, the legislature is poised to try to override the veto. Bastards! (Yes, I equate them to the bastards who raised my Copaxone copay!)

Here is a letter I sent to my state senator and representative (and surprisingly, there was no cursing!):

Dear Senator/Represenatative,
I wish to encourage you to sustain Governor Henry’s veto of HB 1326 that makes embryonic stem cell research in Oklahoma a criminal offense. As a constituent in your district living with multiple sclerosis, stem cell research is critical in finding a cure to MS and other debilitating diseases such as Altzheimer’s, Parkinson’s, juvenile diabetes, rheumatoid arthritis and countless others.

The interpretation of this bill by many in the legislature has assumed inaccurate facts. There will be no use of stem cells from aborted fetuses. The National Institute of Health (NIH) has drawn the line saying the only stem cells used will be from discarded blastocysts left over from in-vitro fertilization treatments. These are cells developed in a petri dish and not implanted in a uterus. These cells cannot live unless implanted and will be discarded or frozen indefinitely at the expense of the donor.

Therefore, if these cells are to become medical waste, why not use them to help find a cure or treatment for thousands of Oklahomans with debilitating diseases?

The Oklahoma Medical Research Foundation supports language that would ban the use of tissues obtained from abortions, would ban the fertilization of a human egg solely for research purposes, and would ban so-called reproductive cloning (creating an identical clone of an individual). What OMRF believes should be permissible, but which this bill criminalizes, is to use embryonic cells created by in vitro fertilization.

If you believe that “no cures have ever come from embryonic stem cells,” you have been misled. Human embryonic stem cells were only discovered a little over ten years ago, which is far too short a time for a new treatment or cure to be developed.

This bill, if it becomes law, would also have severe economic impact on Oklahoma. It will make recruiting scientists more difficult, and it will make Oklahoma unattractive for biotechnology companies and investors.

If you override Governor Henry’s veto, this law would be the most far-reaching, restrictive, and in my view backward-looking in the country. I urge you to sustain the veto.

Respectfully,

Kelley F
My Address
OK
My Phone

I have never been what one could call a political activist, but this just really got under my skin. If you live in the state of Oklahoma and think this bill is ridiculous, please contact your legislators.

Yay, democracy!

Peace,
Kelley

P.S. Bad news. Hopefully the Senate will listen.

Friday, April 10, 2009

OK, Now It's "Real"

***WARNING*** There will be whining and complaining in this post.

I am down. And I am down for one of the stupidest reasons ever. I look frumpy. It has nothing to do with my weight, although I could stand to lose another 15 or so pounds. It’s my shoes.

The only shoes I want to wear right now are my white New Balance shoes. They are the only shoes I trust. Trust? Why should trust be considered? My New Balance shoes are the only shoes that provide me with stability and balance, no pun intended.

The only dress shoes I ever wear these days are some really cute black slingbacks with a nice stable heel. Pumps are out of the question. And I can only wear the dressy shoes for a few hours, not a whole day or my feet start cramping.

This is all due to MS. Oh, and my flat feet. I have wear inserts in most shoes to support these incredibly flat feet.

You know, I don’t think I ever got angry after my diagnosis. A little scared, sad and shocked, yes, but not angry. Perhaps this shoe issue has really made this “real” for me. I know I should be grateful that I have only a few minorly annoying MS symptoms with which I am dealing, and I am truly grateful for that. I have been living with this diagnosis for just over eleven months and it is just now hitting me. How random. I think I pushed down my emotions in order to reassure those around me that I am OK, especially my mom. I have always had a sneaking suspicion that she feels guilty, like it's her fault that I have MS, that she gave it to me or something. So I'm dealing with anger that is turning to sadness over SHOES! God, this is retarded.

It’s not like I was a fashionista, but I do clean up well. But now I have to resign myself to old-lady looking shoes. This sucks!

Any suggestions for finding non-frumpy footwear that gives the required stability for those of us with MS? I would greatly appreciate hearing about your experiences.

Monday, April 6, 2009

A Site You Should Check Out

I received this from Stuart. I hope you will check out his site. It is very useful; kind of a catch-all for all the latest MS news.



Whether an MS patient, a caregiver or a medical professional:
If you are not yet receiving the weekly MS e-Newsletter, titled "Stu's Views and MS Related News", or having access to our website and MS blog, then please consider registering after reading the information found below:

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MS Views and News
http://www.msviewsandnews.org
Our Mission: We are dedicated to the global collection and distribution
of current information concerning Multiple Sclerosis. In collaboration with
other organizations, MS Views and News uses state-of-the-art communication
channels to provide information for those affected by, or interested, in MS.
<><><><><><><><><><><><><><><><><><><><><><><><><>


Enter a place where information and knowledge is provided for anybody affected by Multiple Sclerosis. This includes the patients, caregivers, medical providers and/or anybody just interested in having availability to MS information.



On our website's homepage (http://www.msviewsandnews.org), you will find a link to register for our website and weekly publication of "Stu's Views and MS Related News", an MS e-Newsletter.



Other features of the MS Views and News website includes:

* Our MS Resources sections of many other Multiple Sclerosis organization weblinks and a video library.

* Find our articles from Ask the MS Nurse and Occupational Therapist. There is a learning .pdf on Achieving Wellness.

* Additionally, click the link found on the left side of homepage to view our Library of MS Archives (http://www.msviewsandrelatednews.com/blog5)



Important information is found within each sponsor Information Ad found on this site. Click each to view beneficial information.



A Must see is our MS BLOG (http://wwwmsviewsandrelatednews.blogspot.com/), where you will find easy-to-read MS articles. Thru this blog you will have access to many other MS informational resources and organizations as well as other MS bloggers. Find the category listings and other links found on the right side column of this blog to help you to better understand Multiple Sclerosis.





On the MS Views and News website, you will find MS Facts and information

in more than (11) different languages. (This is beneficial and much needed

for MS patients or family members/caregivers who don't read or fully

understand English, but need Multiple Sclerosis information).



Once you are registered, you will begin receiving our weekly MS e-Newsletter



MS Views and News, Inc., strives to keep the MS patient and caregiver,

informed and up-to-date with MS News and Information





If you have any information, questions or comments, please send an email to Stuart Schlossman (stuartschlossman@bellsouth.net)





As a Reminder:

I am not authorized to answer specific questions regarding medical diagnosis or treatment.

Should your inquiry deal with such specifics, you should contact a physician or other qualified healthcare provider. If your inquiry is of a more general nature, please feel free to contact me, by email.



Warm Regards, Stuart Schlossman




revised – February 2009