Tag Archives: Multiple Schlerosis

The Struggle

The Struggle

I struggle to get kids out of the house with some kinda breakfast, Eggo Waffles in the car, spelling quiz in the car, pull over to yell effectively about wrong words. Doesn’t everyone do this? Get to work, park my car on E. Not the car…me. At work, struggle to pee, no time for that, struggle to teach, to be patient, answer questions, give guidance, go to meetings. Stay awake in them, have fire drills. Struggle to get kids to soccer, tennis, and gymnastics. Take sitter to play with one while the other is in activity. I drink coffee and wait. Struggle to get home, struggle to get family feed, struggle to do homework. Struggle to read stories, fall asleep while reading Harry Potter…again, struggle to grade papers, keep up, Hubby does my report for work, struggling with cog fog, can’t concentrate, struggle to create a test…couldn’t. Struggle to be patient, struggle to be a loving mom, struggle to want sex, sticky notes on bathroom mirror, reminders, HAVE SEX, MORE SEX, ANY SEX, SEX IS GOOD, grade papers 6:00a.m. on SUN. morning at Cracker Barrel, grade and plan from til 12, at noon “Mommy, Mommy!” music to my ears, I miss my family, husband struggles alone with two kids. Try to grade papers, after school; tennis club, drink LOTS of vending machine coffee, after school soccer stay in car to grade papers, instant sleep. Sat. grade papers, pass out, struggle to get to ballet with Avonex side effects, a peanut butter and jelly sandwich and Celebrex (found to be unsafe, taken off market). Struggle to meditate so that I could struggle more. Struggle to not kill anybody, struggle to stay married, struggle to have date-nights, struggle to get sitter, Chinese food and movie from blockbuster.

I had to stop struggling so I, quit.

HELP! I need your feedback more than ever. I am writing in preparation to speak to groups WITH and WITHOUT MS. Groups that are struggling for one reason or another. To make my presence as meaningful as possible, please tell me if you can relate to “The Struggle” in ANY way and if so how?

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Dr. Wahl , save me from myself!

Part One “The Beginning” (FULL STORY-click here)

I got a head start; lost ten pounds…before MS kicks in. Weight management was important. I could control NOTHING about my MS, but I could control everything about my diet…right?

Part Two “I’m the Picture of Health” (FULL STORY-click here)

Fast forward 20 years, throw in lots of diet and drug research. I became a meditating yogi and I’m the picture of health…right?fruit.tree

Part Three “Damn this Disease” (FULL STORY-click here)

It’s getting worse, I think : / Dr. Wahl to the rescue. She’s a Doctor who also has MS. She looked at myelin on a cellular level to see what chemical compounds it would need to rebuild. Then she examined food items that are available that would give us THOSE chemicals compounds. Well, check out her (click here) Minding Your Mitochondria diet for yourself  and tell me what you think.

Part Four “Could I be at risk for Orthorexia?”  (FULL STORY-click here)

It’s an eating disorder where people obsess over healthy food. I’ve been called lots of things, but never this one. To change the error of my ways and be more GANGSTER I’ve actually eaten some salmon and (drum roll!) Beef liver. Picture me gagging right now!

ALERT! If you’ve been vegan for 15 years or so, be sure you take thisenzyme

before you eat thisliveredI am obviously taking Dr. Wahls diet to heart. I worked myself into a Vegan corner because I deemed it to be the best dietary choice…for me. I’m seriously questioning its health sustainability for me at the moment as my health seems to be in decline. I’ll do what I have to. By any means necessary, even eating liver. I can do it!

ABC News, “Good Morning America” is discussing Orthorexia, video link below.

VIDEO: When Eating Healthy makes you Sick

COMMENTS:

Illness or not, how have you used nutrition to try to control your health? What did/do you depend on?

Have you ever changed back??

What do you think of Dr. Wahls diet?

Have you EVER heard of Orthorexia?

 

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Filed under MS and Nutrition, Uncategorized

Missing You

On June 22, I had a post suggesting that I would be blogging less. Well, that’s ridiculous. I still think and write through the eyes of my blog. I see everything through the eyes of…how can I blog about that, or, that should be a blog post or, hmmm, I wonder how I can make that INTERESTING? So I guess this means I’ve missed you, even though I haven’t actually gone anywhere, and “you” is, my three friends, two of whom I talk to weekly.

FINE! What I really miss obviously is…blogging. Researching stuff, learning stuff, being fascinated, and having a good reason to surf the internet! MS, is my excuse, and guess who I found today??

Tamia! One of my husbands favorite artist, and can you see why? She’s talented…of course! LOL

He was also the one to tell me that Tamia was diagnosed with MS.

This saddens me, but from my own experience, I know this definitely is NOT the end of the world. She is still quite HOT and she inspires me, and my husband too! Tee hee hee 🙂

COMMENTS:

Now, nice little break! Back to the point. What do you like to do? (me…I know I’ve gotta remind you after all that hotness, writing) What do you use as your excuse? (me? blogging) Annd you definitely don’t have to have MS to answer this :/ Jump right in!

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MS: Motivation from Montel Williams

I have found several interviews in the last few days with Montel Williams, talk-show host, who also has MS.

Montel Williams interview about MS

Montel Williams interview about MS

I found them very motivational and wanted to share this on with you today.  https://www.youtube.com/watch?v=VpmKTMObICE&feature=youtu.be

Can you relate to Montel’s experience with MS?

COMMENTS:

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Filed under MS and Depression, MS and Exercise, MS Drugs, Uncategorized

I don’t know how much time I have left, so I want to run fast”

RUNNER-4master675

http://www.nytimes.com/2014/03/04/sports/for-runner-with-ms-no-pain-while-racing-no-feeling-at-the-finish.html?emc=eta1&_r=0

This young lady inspires me to make everyday count; live life to the fullest and have no regrets. Do it now, life is short.  To not worry about what anyone else thinks when they see me stumble, even fall. She inspires me to go to the gym, and work harder while I’m there.

Comments:

What’s your take away?

RUNNER-4master675

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MS and my new job update

At least once a day I feel overwhelming excitement, love and connection.magic_schoolbus At least once every other day I feel fear, anxiety, and sadness. And then every three days, I wonder if I can do this. But NEVER have I felt like… I can’t.

The overwhelming love and connection comes from the kids. Some can’t wait to say “what’s YOUR name”. Like Thinn, the little Asian 5th grader who left her seat, going against the flow of kids entering the bus, to sit next to me. We talked only 10 minutes or so but, when she left the bus, she stood on the sidewalk after the others had left; staring at me. I was so happy that I saw this and could wave goodbye as the bus pulled off. Her face said that, that was what she was hoping for, as she bounced up and down to wave back.

The fear and anxiety come from having a hard time walking up the walkway, fearing that people must see me struggling; holding on to the hand rail constantly, even when it’s wet, cold and icy. Losing my balance when I get to the end of the rail, grabbing for the only thing there now…snow. Not very supportive, that stuff. Could have been a disaster but, I caught myself just in the nick of time.

The sadness comes from not being able to do the simple things that I used to take for granted: walking up a hill, in a straight line, or climbing up steps. It’s like losing a friend. Not a BEST friend, but still a friend.

The self talk creeps in now, with the doubt, that voice that wants me to give up. The voice in my head that feels sorry for me, has little faith, and doesn’t think I can do it.

I speak to NO one at work. It’s not safe, so I hear no other voices to shut this one up. I have made a couple of friends at work, and after close examination, do feel I can talk to them…a little. I go to Doc with my negative self talk, and he says, “Sounds to me like you’re trying to talk yourself out of this job.” The voice in my head screams, “No Doc! No! That’s not it at all!” but, I realize he’s right.  That’s the voice in my head… not the real me. The real me has a kind voice, is a cheerleader, and super supportive with 100% faith that this is the RIGHT thing to do. The real me focuses on all of the positive moments that support this idea, this kind voice; like Thinn, on the sidewalk. Every now and then, I talk to Doc for a reality check of what the other voice is trying to do, make me fail. Then, I turn it off.

KindrgrtnBsComments:

Have you gotten back into the workforce after having to be out of it for a while? Were you successful? What roadblocks did you encounter? What did you find helpful in sticking it out?

 

 

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My Dad only has One Testicle: MS, Kids and Cancer

On this day at work I sat on the school bus seat across from 11 year-old Ian and his 10 year-old brother Brian. KindrgrtnBsThe minute I pulled out my knitting- SWOOSH! Ian was next to me. He was fascinated and eagerly asked questions. Are you knitting? Yeah, do you wanna try? Happy response. I put my arms around him and held his hands around the needles and guided him through a couple of stitches.

Me: “So what’s your favorite subject?”

Ian: “Science, but my concentration is Visual Arts and Music. I play the violin.”

Me: “I LOVE science and know a lot about it, and I’ve wanted to play the Violin forever!”

I don’t know where (or why) in the conversation Ian tells me, “My Dad had Testicular Cancer”. Somewhere before or after he told me that there are 208 bones in the body.

Confused_2_tnb

Ian: “Yep, and he only has one testicle, like Lance Armstrong. Who you know, by the way, is actually a good guy?”

Me:”Absolutely he is.”

Now little brother Brian slides over to say that his friend told him about a bone that we don’t need.

Me.: “Hmmm, I know we don’t really need the appendix, but I don’t know of a bone we don’t need.”

Ian: “Can you die from cancer?”

Me: “Yes, but Testicular Cancer is one of the best kind to have, ESPECIALLY if they catch it early like Lance Armstrong.”

Ian: bright eyed, “Oh yeah, they caught it really early! He walked at this thing to raise money and there was a big sign that said TWO YEARS CANCER FREE.”

Me: Wiping the sweat from my brow I say,” That is awesome! Your Dad is great. He’s a survivor!”

Brian: “What’s a survivor?”

Me: “Someone like your Dad, who doesn’t die from cancer.”

Ian: “Lots of people die from cancer.”

Me: “Yes, they do, but lots of people don’t. It’s hard for the body to fight cancer, but medicine has lots of new things to help.

Brian: “Like CHEMO! Pause…But it makes your hair fall out.”

Ian: “What is Cancer?”

Me: “Welllll, do you know about cells? Your body is made of a bazillion cells? and…”

GEEEEZ! When are we gonna get to their bus stop? Please… drive faster!

It’s obvious that these boys are extremely bright and that their parents love them very much, and have done all the right things to help them deal with this.  They also seem to need to talk about their Dad’s cancer some more. I looked like a “safe” person. A stranger that they felt like could trust with their feelings. I passed the short test: I cared enough about them to show them how to knit, I listened to them, I didn’t freak out at the word Testicular, and I didn’t bash Lance Armstrong.

My children were 5 and 10 when they first heard that their Mom has MS. I too thought I did all of the right things to help them deal with this. Did I? These boys clearly asked me questions that someone had already answered for them, like “can you die from cancer?” Maybe even, “What is cancer?” Someone giving better answers I’m sure, but these boys still had an overflow of emotions regarding this, that they still needed to get it “out”.  A  healthy way to do that was to “talk about it”.

Did I do the right things for my kids? I realize now, that I could have done more. A talk/play group. Something run by someone professional…qualified. Run by someone who knew HOW to get the kids to talk comfortably about their feelings, specifically those feelings regarding my illness. I was not that person for these boys. I do feel though, that I did no harm. These boys will be fine; they are emotionally able to talk, and they’ll find a person  to talk to.

Comments: How have you helped the children in your life deal with your chronic illness, or maybe that of a close family member, a Grandparent, sibling,  or Aunt, or Uncle? Can you think of other ways that someone might try to help their children cope?

Please share. It’s a tough time for the children too.

Some articles that you may find helpful and the websites that I found them in:

10 Challenges for Parents With Chronic Illness

http://psychcentral.com/blog/archives/2010/09/27/10-challenges-for-parents-with-chronic-illness/

Parents and Chronic Illness

http://www.parents.com/parenting/better-parenting/advice/parents-and-chronic-illness/

5 tips for parents with chronic conditions

http://www.sheknows.com/parenting/articles/985629/parenting-with-a-chronic-illness

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MS and depression: You can’t post that! It’s depressing.

Member 1: “You can’t post that! It’s depressing and it has absolutely NOTHING to do with MS.”

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Board President-Estizer Smith
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Estizer Smith

Member 2: “So what…it’s real! Everything in my life involves MS. It’s at the core.

Member 1: “What about your original mission statement and goals? To educate, inspire and inform, it does NONE of those things.

Member 2: “You’re right, it doesn’t, and those are the reasons that we blog. It’s only one post though! It’s balanced out because there are three more waiting that are on the same subject and they are super positive. It was just a tough day emotionally. I DO have those.”

Member 3: “What about all of this BUS DRIVING? Is that all you plan to write about now? If that’s the case then you should start another blog about driving a bus, or one where you can rant about anything you want, but you should say that up front. You set this up as an MS blog. When people click here they expect to find information about MS. It’s misleading. I’d be pissed if I were looking for symptoms, or drug updates. You’ve got to think about your readers.”

Member 4: “HA! What readers! You mean all THREE of them? You are right. That’s absolutely why I started this blog, because I want to share, learn from and engage others with this disease. It’s been over a year and I have all of three readers, only ONE of which actually has MS.”

Member 6: “Be patient. Blogs take time.”

Member 2: “No- I think it’s all good and all inspirational. Even your difficult days; no, especially your difficult days. Those days say to others that it’s not easy, and it can suck, but you can’t give up! Those days say, hold on, things always get better.”

Member 5: “Hmmm, THIS is what sucks. This makes my brain hurt, it’s like cerebral pushups. It may be THIS that’s not worth it. We write but we can’t agree so we stop writing. When we don’t write we’re not happy. It’s a very important stress management tool we’ve used for years.”

Member 6: “So just write. If that’s the case…just write, who cares.”

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Member5:” Then I might as well just write in my journal. That’s what I’ve done for years. The reason for the blog is to share. Share and engage.”

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