I am not a professional so what I share with you are only my choices: STOP EATING MEAT. Just sayin.
At the time of my diagnosis my goal was simply to be as healthy as I could so when my body had to deal with an exacerbation it had all of its strength, even down to the cellular level. Little did I know, Dr. Terry Wahls had taken this to a deeper level than even I had considered. With each relapse I realized more and more how much I couldn’t control the disease, so I continued to search for ways to fine-tune my nutritional choices. Dr. Wahls got my attention with “Minding your Mitochondria” She spoke my language! My only reservation, she wants me to eat a little meat. The jury’s still out.
At this point I’m actually a Vegan and have been for about 10 years now. A year ago I gave up sugar. Sugar is the DEVIL. I started to disappear so I relaxed that a bit.
Now in comes one of my young Barristas (I’ll explain that later) and she introduces me to “Forks over Knives” a mind-blowing documentary substantiating the connection between meat, diary and disease.
There are many different thoughts on nutrition, please share yours with me in your comments..
I’m back and it’s time to eat crow on the support group post. A lot of it! Our need for support is critical in managing this beast. I’ve gotten my support in a different way, by sitting on a therapist couch once a week. Whoever said African-Americans won’t go to therapy, never met me! OH-and as a side note, I found my super hero support group and they are virtual, http://www.activemsers.org/ I couldn’t believe my eyes!
ActiveMSers is designed to help, motivate, and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually, and socially—regardless of physical limitations.
There’s a lady there who bakes cupcakes because that’s what SHE does. Not everybody rides bikes or swims or climbs mountains but this site motivates you to get off your tosh and DO whatever it is that YOU do! After seeing this site I went to the gym and rode the bike for 6 MINUTES, and on day two, 20 MINUTES!
I know I’m going to get a lot of flak for this, and if I change my mind ,you’ll be the first to know, for now my take is…don’t go!
It’s me, okay. I know already, I know, I have “sharing” issues. (Yeah right, MISS BLOGGER). My psychiatrist said to me just last week, “I’m going to get you hooked into the support group. I know you don’t want to. I see your ears going back but it could be good for you” (in a very Laverne and Shirley voice) She says “you think you’re in your own little MS purgatory, and you’re not!” I don’t like the image in my head. A bunch of people sitting around in a circle comparing complaints. Makes me think of a group called, “People Helping People”. Who is that, Boys to Men in wheelchairs? You don’t understand, I need a room full of professionals helping me!
You know what would really help, if everybody in the group ran marathons and had MS. That would be a kick ass group. Give me a group full of Super Heroes! That will keep me believing that anything is possible. How about that in a support group Doc?
When I began to unravel, I knew I needed help, and more than a girlfriend. I saw Dr, Allison Henry, a clinical psychologist.
In addition to seeing her once a week, she suggested the book, Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. By Jon Kabat-Zinn I found it very helpful.
I began to practice Mindfulness Meditation and it made a huge difference in my life.
I felt like I was better able to handle the stress, and stress triggered my MS. We will never be able to eliminate it from our lives but we can equip ourselves with the most effective coping skills to handle it.
I am sure that it had a positive affect on how I handled the stress of the classroom and my MS.
One of the MOST inspiring stories I’ve seen and I want to share.
Giles Duley gave up a life of glamour and celebrity as a fashion photographer to travel the world and document the stories of the forgotten and marginalized. While on assignment in Afghanistan he stepped on a landmine, a horrific event that left him a triple amputee. In this moving talk Duley tells us stories of peoples lost and found — including his.
I read a blurb in the NMSS Magazine that stated African Americans with MS are less likely to use any of the disease modifying drugs than people of other races. That got my attention although I do think its a matter of personal choice,I choose to do drugs! I set out to find the nearest African American support group to check this out. That was 1.5 hours away in Philadelphia. Like any other group I’ve come upon, I talked more than anyone in the room. Except this one guy, he was pretty cool. I brought up the article and as it stated most of the people in the room were not on medication. But what the article failed to address was how many people in the room had insurance or co-pay issues. As I looked around the table I was far more concerned with the level of obesity and a host of other health issues that must only complicate MS.
Everyone went around the table and talked about what bothered them last month and then it was the cool guys turn)At first he had a burning pain in his leg JUST LIKE MONTEL but when Montel said it I thought it was totally BOGUS DUDE and he just wanted to smoke some weed, but now I believed him! (Sorry Montel) Next the cool guy said he had an MS Hug and EVERYBODY in the room was like “oh yeah, oh yeah…they’re the worse right? Hahaha, oh yeah” EVERYBODY except ME! All of the sudden I felt like I forgot to put my drawers on. I just sat really quiet so nobody noticed.
Now… how cool was I when two years later I felt an intense tightening around my chest, along with a pain and burning sensation. I clutched my chest… awashed in fear! This was it! Did I go to the emergency room? Because these were all the signs of a heart attack. I DID NOT. Why you ask? Because this was an MS HUG like the cool guy at the support group had described…just like it…right…everybody said so, right?
The family went out to dinner tonight and everybody got out of the car leaving me to get out last. This is more and more the case lately. I look across the parking lot and they are all standing there waiting on me and watching. I close the car door and prepare to cross the parking lot when my husband yells out in his best southern Jenny voice “Run Forest…RUN!!”
I almost pee in my pants right there in the parking lot I’m laughing so hard! Don’t you worry, I make him feel bad about it all night long (wink, wink) It still cracks me up- just typing it here, Run, Forest… RUN, hee, hee, hee!
My name is Estizer Smith. I am a photographer and a teacher. A mother and a wife who happens to also have Relapsing Remitting MS. I enjoy performing and writing a great deal. A current relapse has taken me away from many of these things temporarily and it’s been suggested that I blog while I wait. Oh…I’m waiting to find the Phoenix (read my “About” page). MS is a …challenging disease. I plan to focus on all the things you can do with MS because in the 20 years that I’ve had it, I’ve done a lot of them. I especially like the open mic forum because it gives me the freedom to sing a song (I won’t) write a poem, tell a story or whatever moves me. My goal with each post is to be Funny( I’m gonna struggle here), Honest, Informative, and Uplifting. I’ll do my best!
Searching for the Phoenix
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Twitter: Estizer Smith
Site content is not intended to be a substitute for professional medical treatment. Never disregard professional advice or delay seeking it because of something you have read on the MS-Open Mic site.