MS: I’m so over it!

I’ve often returned to blogs to find that there are no new posts for long stretches of time and I find myself wondering… what happened? Where are they?

I don’t want to sound too final but, that’s kinda why I’m signing off, and explaining. Yes sir re… I’m over it. For two years I’ve used my blog to keep my cognitive skills sharp (ironic, since it’s my MS that causes me to have cognitive issues in the first place). I know as much as I need to know about this disease, probably too much, and I’m walking away.

I’ve always found it healthier to keep my distance…stay away. I realized and accepted many years ago that it is going to do whatever, whenever it wants. I have been blessed with Relapsing Remitting MS. I have been very aggressive about the disease modifying drugs, diet and lifestyle choices. Each of these I believe are the reasons for my good fortune. I have slowly recovered (and sometimes quickly) from each of my relapses without the use of steroids. Please… don’t get me wrong, sacrifices were made. If I had continued to work, this would not have been the case, not even close. It would have been necessary with many of my relapses to use the steroids to recover more quickly. By not working, my lifestyle changed. My body gets what it needs; time to recover, rest, and reduced stress.

The sacrifices are more my husband’s than mine. As the person with the illness, I expect to suffer. I cannot walk away. It follows me. He has a choice, always.

Here is where I want to tell him:

“Thank you”

Spoken Word Video

Title of poem: “A river for Kevin”

Venue: Busboys and Poets, Hyattsville, Maryland

The MC for the night, E-Baby Poems was awesome! Did you see him come back to me when he saw that I was nervous XOXOX

 

My new blogging interest is…marriage. I want to encourage others to “Get married. Stay Married, and Be Happy”. So please, check back from time to time to see how I’m moving along with it.

 Comments: I always look forward to reading them and responding.

 Take care!!

MS…I’m so over it!

MS and Anger: “Falling the Fuck Apart”!

So you wanna know about “anger issues” when dealing with Relapsing Remitting Multiple Sclerosis? This question caused me to go back into my blog post’s and find this post. I knew I MUST have written about it SOMEwhere. I did…and it’s a joke. “To Not Unravel”, clearly, it was early on in my blogging and I hadn’t come to terms yet with how “politically correct” to be. Well, I’m over THAT! How bout ” Falling the Fuck Apart”.

First Christmas as a new Mom, Ho, Ho, Ho.

When first diagnosed I was cool, but about four years into it, I became a beast. As my husband would say, “A PitViper”. I was unbearable…even to myself. I had no idea it was my MS. I thought I was just exhausted (I now know, THAT WAS MY MS) I had two small children though, and I thought it was just life, not MS. That was until one day I noticed my brain was boiling. I sat down on a footstool in the kitchen and called my sister-in-law, the nurse. (What the hell was I thinking; I should’ve had my Neurologist on speed-dial) She told me to eat some bread and take some ibuprofen. I did that and went into a quiet room to meditate. The boiling feeling stopped.

Now that I’m twenty years into it, I realize “Hindsight truly is 20/20”! That wasn’t the first time I had noticed the “boiling” sensation and I NEVER mentioned it to my Neurologist but, I did recognize that this problem was:

1. Physiological
2. In my brain (where I now understand much more about the presence of lesions)
3. Something that I could stop, with the right tools, knowledge, and sometimes drugs.

The doctor that I DID go to about this was my Psychologist. Yes, it was MS related. Although I didn’t know that at the time, what I did know was that I had to have someone to talk to about it. That someone had to have enough skill (and sense) to know that, I wasn’t crazy. She listened (once a week) and then threw me headfirst into “Mindfulness Meditation”. That is what saved me.

Is this the face of a PitViper?

I started with the book “Full Catastrophe Living” by John Kabat Zinn.

JUST DO IT, and remember these things:

1. Regardless of what anyone else thinks, you are not a bitch (or bastard)
2. You are still be a good mom, dad, daughter , sister, or brother.
3. The MOST important thing in MS is that you’ve GOT to take care of yourself…”By Any Means Necessary”.

 COMMENTS:

Have you experienced anger issues with MS or any other Illness?

Have you come to manage it, and if so…how?

LOOK Ma…No Relapse!

An extremely stressful few weeks WITHOUT an exacerbation .WooHoo!I am here to report that I made it through and I feel like it was without a doubt, due to my regular Mindfulness Meditation practice.

This is how I’ve found meditation to work: Consistent practice builds up my resistance to stress which is sometimes present in daily life, like, getting kids off to school or going to work. Stress however, is not something that we can always predict, the death of a loved one, the loss of a job, the holidays, or a divorce. I have found that I am most resilient against these sometimes sudden and large stressors, as a result of my Mindfulness Meditation. Does it always work? No. I believe that my last relapse was triggered by one of these large life stressors. One that I never would have even suspected of being able to reek such havoc but, in hindsight I realize that I had let my meditation lapse.

I feel the need to clarify here that “Meditation has Nothing to do with Religion” ( As explained here in a video interview with Oprah Winfrey and Deepak Chopra) As a young person, that thought would have made it impossible for me to take advantage of its stress and overall health benefits. Although many different religions incorporate meditation in their practice in different ways, it is not a religious act.

Note to self: Let’s keep a disciplined practice…disciplined.

Comments:What have you found to be helpful in your stress management?

References used below:

http://www.huffingtonpost.com

http://www.mayoclinic.org

I auditioned for a MUSICAL and I KILLED IT!

Can I sing? HELL NO! but my renewed outlook on life went back to…fuck it! I can do anything that I want to!

I did it like JAMES BROWN

I want to say “Thank You” from the bottom of my heart to Eleanor and Wil, Sharon, Paula and Dawn, for my day out on the boat. From Sharon driving to pick me up, to Dawn fixing my plate, to Eleanor serving tofu and grass feed beef, to Paula making me read poetry and think of Gwyn Michael.  Big thanks to Ryan Hulvat for being the REASON that I met each of the aforementioned people. I love you guys madly. (All my photography family)

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It’s hard to explain all of the ways in which that day was good for me, maybe even impossible. But, here’s an example: The following week I auditioned for a musical in Quakertown, PA. Can I sing? HELL NO! but my renewed outlook on life went back to…fuck it! I can do anything that I want to! I eagerly raised my hand to “sing” first and I did it like JAMES BROWN! I held nothing  back.  They paused and said…hmmmm:/ Can you read this script for us? Are you kidding me…I can read the hell out of anything you give me. Soooo, what are you saying…you don’t like my vocals:/??

I landed the only non musical part in the musical!! I KILLED it (LOL)

Point is: I’m now driving to Quakertown for rehearsal, meeting and engaging some really cool people. Feeling confident about what I have to offer and enjoying every ounce of it.

And last, but not least…thank you to Gwyn Michael R.I.P. for showing me how to live without the limits of others. My Warrior Sister! May you continue to look down on us, and smile 🙂

How have others motivated you to “get back out there”?

Do you have any suggestions for a person who finds themselves self-isolating, that would initiate change? Everyone always suggest volunteering in some way but, I want something different.

I find that if I have a reason to go…I am more likely to go. I’ve thought of starting a book-club at the local Cafe. What else would you suggest?

I was in labor

I was in labor and totally in Estizer fashion, went to the airport to pick my parents up with an excitement that was impossible to contain! They were in the “labor suite” with Kevin and I when he crowned. Before, that I thought I would be bashful and want privacy. Everything changed as soon as I saw all that hair. I was SOOO excited, I wanted everybody in the hall to come and watch! My Mom grabbed my Dad’s hand and they promptly ran out of the room. My Mom was having labor pains each time the monitor said that I was. I felt nothing but joy and excitement!

 Today, 25 years after his entrance, he was my “date” to an MS luncheon at “Melt Grill” in Center Vally, PA. The lunch was sponsored by MS Lifeline which I have found to give wonderful support. Met very nice MSer’s and hope to keep in touch. I had the only “tall, dark, and handsome escort”…I couldn’t be happier.

COMMENTS: What’s your “labor story”?

Dad’s, if you’re reading this…don’t feel left out. What’s your story too.

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?

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?

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 this

before you eat thisI 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?

 

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!

MS and fatigue :(

Just about to sit and put my thoughts down in the name of a blog post.

It’s taken me all morning to have breakfast, take my medicine(S), and catch up with a girlfriend on the phone. Of course, now it’s 2:27 and I’m CRASHING! Dammit! Gotta go.

Comments:

When have you found fatigue to disrupt your day?

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

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: