Thursday, May 27, 2010

My life with MS right now

(Keep scrolling down to read the whole story)

I have MS. I was diagnosed 20 years ago.

I could tell you all the details but it isn't that interesting. To shorten the whole story it wasn't until about 5 years ago I could see it was going to be a problem.

The biggest problem I have is walking. I was an art teacher and on my feet for my job most days. Lugging bags of clay, in and out of dark rooms. Someone suggested I try for SS disability. I was told it is very difficult but to keep trying. Surprisingly I got it first try. I guess MS looks good on paper. I'm glad I did because it got me on Medicare and when My husband Ozzie lost his job I was covered by at least some Insurance. That was 4 years ago.

Since then walking has gotten more difficult. But even worse is the fatigue. MS fatigue is hard to explain to people. Who at the age of over 50 isn't more tired then they were. For someone with MS fatigue is very bad. On a bad day, I walk across the room and I need to sit down and rest. On a good day, I can walk a little further like into a store and down a few isles and then suddenly I'm looking for a chair to rest in.... It sucks.

For the last 2 years I've been pretty depressed about my future. I rely heavily on Ozzie. He is a dream Man. Since leaving my work situation I have tried to sell my self a little more as an artist and do 3 small art shows a year. I have always been a routine and ritual person. Making art stuff for these shows has given me a focus and routine to get up and going everyday. This has gotten harder and harder and I become even more reliant on Ozzies help.

I also have a big ego and vanity issues. I want to be able to take care of myself and not rely on others for the simplest things. I haven't been able to let go of my vanity even though it is detrimental. Which leaves me frustrated and teary. Periodically I have breakdowns.

Ozzie who I have been with since 1980 has been the most loving supportive and super human man through out all this MS shit. Everybody should be as lucky as I have been. I've often thought I have been so unlucky, poor me, poor me with my MS. But on the other hand, I've been so lucky that I met Ozzie.

But now I have hope. Another long story shortened. Last September on one of the many many MS sites I read regularly. I read about CCSVI. .....

Here is a link that will tell you all about it:

I've been obsessed with CCSVI since then. It makes so much sense! Determined to have the procedure done. I managed to get my name on several lists for potential treatment. It became a political soap opera. It seems (whether it is or not) that Neurology is very attached to ownership of MS. So time after time doctors who are treating this condition on people who have MS were virtually shut down by neurologist complaining that Interventional Radiologist have no business treating MS patients.

But then I ran across these videos:

I've read about dramatic results but this is the first time I have seen it. Through a series of internet snooping I found the women on the video on facebook. I wrote her and asked who treated her.

I now am so excited because I have an appointment!!!!!!!!!!!!!!

June 23rd.

For the first time in a long time I have hope for possible physical improvement. That's the point of this blog I am going to document my progress here.

So wish me luck.

xxxx's to all!

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  1. This is good. The more people who document their experience with CCSVI, the better. I am so excited for you! I am looking forward to the 23rd too! XOXO

  2. Retta, I posted the comment and it disappeared. Trying again.

    I am very excited for you. You are a role model for me, never give up, keep on researching, keep on going. Often when have a problem I am thinking, what would Retta do..... Really, you are a part of my life even though I do not write often. I love you, you have a great family, and I know in my heart, that you will feel better after the treatment.
    Great you created this blog. Hang in there, I keep my fingers crossed the treatment will be a great success.

  3. Momma forwarded me the link to this blog today--best of luck, Retta! I'll be following this blog and hoping for all the best.

  4. Retta,
    We are very excited for you; I have read about it a bit and seems that CCSVI might be a real breakthrough in MS treatment. Wish you good luck and will get special juju to help.
    Greetings from Lagos,

  5. Great!! I love me some juju!!!!!

  6. I will be keeping a close watch on this blog because I have been very interested in CCSVI since I heard about it a few months ago! Is very exciting that it may offer some real hope for once! I have had MS for the last 30 years, also am lucky to have a wonderful man at my side so I will also send you my best thoughts and good juju! Mary Franzke

  7. Mary....... here is another success story:


    and her post procedurewalking.......