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Speak Out...Every Voice Matters!

I know I have been talking a lot lately about how important it is to speak up about what is important, about what WE need! Well, I am here to tell you that every voice matters and I urge you to contact your representatives. It really does work. As most of you are aware about a week ago I decided that enough was enough and I needed to vent about my feelings towards this very flawed system we have here in the US (in regards to SSDI & medical coverage). I got on my soap box and got quite the response! I also emailed my congressman, Doc Hastings and did some further research which led me to The National Partnership for Women & Families in Washington D.C. (they were a big part of getting the FMLA passed through congress). My thoughts were that if we could duplicate what they did and make enough noise; maybe we could make a change.

The other night I got a phone call from Dixie over at Congressman Hastings office. We talked for almost 2 hours about my ideas in regards to the SSDI system and what changes needed to be made, how this affects people with MS (and all disabilities) and more! She was very interested and urged me to continue to write in to the various representatives. She gave me the names of other representatives in the area to write to that could also help to make a difference! She also took down my blog address so that they can check in from time to time to see how things are going! :) Then yesterday I got a call from Kiva at The National Partnership for Women & Families in Washington D.C. She was very helpful. We talked for about a half hour where I just filled her in on what I was trying to get done. She gave me the name of a book that would be good to check out.... Conflict & Compromise by Ronald Elving. It focuses more on the FMLA but really is a breakdown of what we can do to change the system and how congress makes laws! She also took my blog information. She then called me back later in the afternoon with the name of a woman who is an advocate here in the State of Washington. She works with the Economic Opportunity Institute and they fight to try and find solutions to problems from a state level.

It is amazing what can happen with just a letter or a phone call! I would urge each one of you to contact your representatives in your own state regarding these issues. The reality is that any working American at any time could be affected by this flawed legislation. Remember, if you are found to be medically WILL have a 2 year wait for any kind of medical coverage (just because you worked and paid taxes). The only way this does not apply to you is if you have not worked or worked enough to qualify for SSDI (which most working Americans will fall under the SSDI range). This is not a just system and MUST be changed. It is not just about those of us who are on SSDI now (as it may take 2 years or longer to get the system changed) it is also for every other working American out there (and every potential working American...our kids and their kids) who one day may be faced with an unexpected change in their life. Life brings things that we can't control. Just as we have no control over our having MS...this legislation can help protect every person who may be affected by other unfortunate circumstances (other illnesses, car accidents, etc.) Life is unpredictable, this is something we know! Do your your representatives, obviously it does help! My one letter and phone call did, so will yours!


Iain Dughlais said...

Amazing. Keep it up!!! I'm a bit of a socialist when it comes to medical issues and believe that every human deserves the same, equal, treatment across the board--rich or poor. Nothing like creating an old fashioned class system to divide the classes further. Really, congrats. Getting politicians to listen to anything that doesn't help their personal agenda is like cutting down a forrest of trees with a herring. Good luck with the others! :) Super cool. World looks pretty different from atop a soap box, hey? :)

Jaime said...

I have to agree. It is funny because I am so split politically. On some issues I am very conservative and others SO liberal. Actually, I spent a good hour meeting with a woman from the NMSS (Erin) yesterday and I am going to join up with them to fight some of these issues. They go to Olympia (to the capital) to talk about this stuff once a year so I am getting involved! I think it is about time there are some changes.

I hope you are well. Take care!


ckays1967 said...

GOOD JOB!!!!!!!!!!!!!!!


This is such a great thing Jamie!

I fear the day when I need SSDI.

Jaime said...


I hope that things are going okay in Tampa! Please know that my thoughts are with you and your family right now.

You know the thing about this is that it does not just have to do with us MS'ers it is every single working American who may become disabled one day and the reality is that any person can go out and be in an accident. You just never know what life will hand you.

It is up to us to make these changes, if we do nothing we have only ourselves to blame! This will most likely take longer than my 2 years but how do I know that this won't be a reality for someone else I love. Every person should have the same benefits, the same rights. This is for us ALL! As the song says...its one for all and all for one!

Please take care of yourself. Hang in there!

Jaime said...


You go, girl!

Linda D.

Suzy said...

You are so right, and I'm glad that you took the steps needed to speak out and stand up!

I was so surprised that I was approved for SSDI on the first go round. I suppose this is a good thing, however, for those that needs it as badly as I do, I feel horrible that they have to fight 2, 3, and even 4 times to get any help. And then further more, we have to wait even longer for medical coverage. Sad, isn't it? I know most of us with any chronic illness can run into thousands of dollars of prescription costs alone! (my med bills would scare most people!! )

There's alot to be said for uniting together to create a better world for all of us, isn't there?


Jaime said...

Thanks Linda!

I agree! It is so sad how much all of this costs and that there is very limited help available. At the present time we have to rely on private donations to the few non-profits out there that can help us. There just is not enough money to go around...we NEED to have access to medical coverage. I don't think that the average person realizes just how much all of this does cost (my medical bills are also very scary...more than most people make a year, and that is just a couple/few months worth).

We must stick together and become a voice that is heard! One that will not go away until some changes are made.

I hope you are both doing well. Please take care of yourselves.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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