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Category: Multiple Sclerosis
Bathroom Day 1 complete
Wow, Tom rocks!!! My bathroom went from this:
To this:
We are shooting for a Saturday finish. Keith, the tile guy, came by to make sure all was going well. Then we were informed ho would not be charging for labor either. It took all I had not to cry. I was so overwhelmed by their generosity. After they left, the tears fell. I looked at Rog and asked why, why would anyone do this for me? Why do I deserve this? These things do not happen to me. He just smiled and said if anyone deserves it, that it is me. Yup, you guessed it…I cried more!! lol These are truly Angels in disguise here on Earth.
Lots of Angels came forward for this. The fab 4o ladies with their donations totaling 1100.00, Universal and their donations of 1500.00, and now these amazing men and their donations of their time and labor! I am still in awe of all these amazing people. There are no words that can express my emotions and my feelings for everyone involved. All that comes out is WOW!!
Blessings and Hope!!
Day 1 – Buh Bye old bathroom
It has officially begun!! Did ya hear me screaming for joy where you live? Yup that was just me!! lol
Many more to follow!!!
Blessings and Hope!!
Multiple Sclerosis: Hope on the Horizon
Is this the medication I’ve been waiting for? The one to give me hope?
In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.
My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!
Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.
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Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].
Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…
I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.
Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?
I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl
I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…
Blessing and Hope!
Weird day…
Ever have those days where you feel like your living it in another body? And, not in a bad way.
Ruby and I did our show on blog talk radio today, The Padded Room. It was a great time with our guest Linni. Today was part one, and next Thursday we will be doing part 2 with Linni. She has overcome addiction, abuse, and now faces a new chapter in her life, Diabetes. You can hear the archives of today’s show here.
After the show, I did my pedaler, watched a couple more Criminal Minds I had DVR’d, and then got in the shower.
I was planning on hanging out and playing Nintendo with dd#3, then an iCal alarm on my MAC went off. It was time for Amy Harden’s Show, Postcards from OZ, on the rlrn blog talk radio. I got in the chat room and Amy mentioned she was on her own today, no co-host. I told her if she needed me, I’d log in and co-host. It was not something I had planned on doing, but I’m so glad I did. The topic was:
Rheumatoid Arthritis: Keeping a Positive Mindset through Holistic Living with Sandy Guerriere.
It was a great show, and Sandy and me have a lot of the same mindset when it comes to foods and what we put in our bodies in regards to our health. If you get a chance, listen to the archives here. We all had a great time. Thanks to Amy for letting me co-host.
It was all so surreal though. It was like it was me doing all of this today, but yet it was not. Not sure that makes much sense to anyone but me. lol
We just had tostadas for dinner, hubby made, and then I got back on the computer and it was an all freaky feeling kind of happening. lol Kind of like an out-of-body thing. But, again, not in a bad way. Kind of a cool feeling really. Maybe it is a feeling of accomplishment or something. I felt pretty useful today, which does not happen often. So, maybe that’s it…I don’t know, but there you have it!!
Now dd#3 and I will be watching some new DVR’d Criminal Minds, with our men Derek Morgan [Shemar Moore] and Dr. Spencer Reid [Matthew Gray Gubler]!!
Blessings and Hope!!
Cool Beans
For the second year in a row, my hubby and his co-workers have had fundraisers, bake sales, and did the MS Walk in support of moi. Next year I am going to design a cool logo for our team, Tracy’s MSKateers. I cannot even explain how I felt in 2009 when Roger told me his buddies from work were going to start doing my walk. Then, again in 2010. We are hoping to do this yearly. Maybe one day, I’ll be able to walk across the finish line when they find the cure! It could happen!!
Then, I find out tonight from my girl Ruby, that Shemar Moore’s mom has MS as well.
Shemar and some of his Criminal Minds co-stars have done the Bike for MS. I think I love him and the show even more now!! lol I’m sure that would just make their dayz!! 😛
Blessings and Hope!!
Epiphany? Wicked wake up call…
It all started with an email from my hubby that had me in tears. I knew it was time to take it, my life, back from my illness[s]. He is suffering emotionally and physically due to my illness. I finally realized that once upon a time, I said I would not let my disease[s] take me over. I realize now, I have done just that. I have literally stopped trying and have been letting it all take me away from me. Almost like I am laying down to die. The ‘why bother’, the ‘who cares anyway’. This person is NOT me! I am and have always been a fighter. I do not give up on things. It may take me a bit to finish certain things in my life, but I will finish them in the end. I am no quitter.
I have Primary Progressive MS, spastic colon, incontinence, degenerative disc disorder, prone to anxiety attacks, depression [sometimes severe], esophagus issues, pain, tremors, and too many little things that come with all this to mention. BUT, I can work with some of these. Food is my biggest enemy. Gluten, soy, dairy, certain veges and seed items are bad for Autoimmune disorders. They can cause terrible problems for me. Processed foods, and fake sugars and fake fats are bad as well. I know this and almost 2 years ago I changed my lifestyle and cut out the crap foods and learned to eat the right way. No supplement drinks, pills, or ‘fake’ foods. I lost over 20 pounds and felt great. No, it did not make me walk again, no it did not cure me, but it sure helped my overall emotional self. My stomach issues all about disappeared. My fatigue lessened. I still had my not so great days, bu they were much fewer.
So WTF happened?? I gave up. I gave in. I got down one day and let it take me over and went back to my old habits. Gained the weight back and all the good things that happened faded. I could not find my way back. Now, I am not saying this was a bad thing or even that I won’t have bad days again. I am saying that I am going to work at getting ME back. Fighting this wicked disease that has crippled me and do everything I can TO find my way back.
And it all began from the email from my hubby. He loves me, completely and true. But, he started losing himself. Sadness and fear overtook him. The worry for me was killing him. I was letting my disease kill me slowly. I was not seeing what it was doing to him and my children. I was lost in my MS. I knew as I read that letter that I needed to take a stand against my MS. I got up and got my ass over to me motorized pedaler and got to work. I lifted my small weights and am slowly getting back to eating the way humans are supposed to eat. Not the way the BS food industry says we should eat. They do not care about us, they care about selling shit food to us and making money off of us. NO more.
Will I slip? Will I have bad days ahead? Will I lose myself again? Maybe! But that’s ok. It’s all about baby steps.
Baby steps here…
to be continued…
The Padded Room – All About Meeeee!!
Show is at 1PM Texas Time!
Ruby and Keith will be interviewing me today on living with Progressive Multiple Sclerosis. [click in pic to take you to the show]
Our show is made possible by the wonderful founder of The Real Life Radio Network, Laurie Zieber!
We hope to ‘see’ you there!
Blessings and Hope!
MS Walk 2010 and The Light Fandango Candle Co.
- MS Compassionate Candles
Most of you know I have Primary Progressive Multiple Sclerosis. My good friend, Lu, owns an amazing candle company http://lightfandangocandles.com .
This is her second annual fund raiser for my Walk on April 18th. [donations can be taken through May]
For 30.00 [which includes s/h] she is offering this awesome MS Compassionate Candle Basket. 2.00 from every purchase will go to my walk.
If purchasing candles of this quality in a store you would pay well over 40.00.
Her candles hold the scent and burn fabulously.
Tell her mztracy sent ya! ♥
Blessings and Hope!
The Padded Room – Unlocked and Unplugged!
WE DID IT!! Through our nerves and medications and everything!
For an amazing blog on our debut show please click on the link below:
For more info on our amazing guest. Click on the link below:
Lucinda Wormsbaker – The Light Fandango Candle Company
Right now, when you purchase the Orange, Multiple Sclerosis Compassionate Candles, 2.00 from every purchase goes to my MS Walk 2010. So, please drop by Lu’s site and check it out!
A huge TY goes out to the whole team at RLRN and to Laurie Zieber, the founder and all around fabulous lady!
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Our next show, April 8th will be focusing on Lupus. Our guest will be the Fabulous Tina Sickinger! She is an amazing woman who struggles with Lupus every day of her life and survives. She is full of hope and fights this monster Lupus with the help of friends and her amazing family! We hope you will join us for our show on the Real Life Radio Network in The Padded Room- Unlocked and Unplugged, on April 8th.
In any struggle, there is always HOPE! Join us!
Blessings and Hope!
Making it Through the Rain 
