Tag Archives: Multiple Sclerosis

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.

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 beast?

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?

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Filed under Mental Well-Being, Stress Management, Uncategorized

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.

Black-woman-meditating1

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

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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!

Performing a Vday Monologue 2010, Artsquest, Bethlehem, PA

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?

10 Comments

Filed under Riding Out a Relapse, Uncategorized

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! img063They 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.MELTed 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.

4 Comments

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MS and fatigue :(

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

journal50019628_nIt’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?

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MS: Swiss Cheese and grief…stay with it.

I was a block of Swiss cheese yesterday. Tears leaked from my holes.

BLACK_GIRL_CRYING-516x340

Very early in the morning, that’s when it started…the leaks. Not until the day was done, did I look back, and see the source of my leakage. When I think of my brother, I am overwhelmed with sadness and it shuts me down. I didn’t want to give in to it, I wanted to be strong. Yesterday, I had things to do.

I should have stopped, sat down and stayed with the sadness. Instead, I kept moving; trying to run from it and… it chased me down. With every commercial on T.V. every stranger hugging in the street, every child in the Revco; I cried. Sometimes I only leaked, other times I poured, but, all day I did this.

I should have just stopped in the morning, and stayed with it. Maybe then…just maybe, my day would have been different.

Stay with it.

Comments welcome:

Have you been grief stricken? Have you found a particular way to deal with it? Hmmm,has it affected your MS? And if you don’t have MS, have you seen it’s affect in other areas?

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MS: “Denial or Determination?”

I’ve shrouded myself in denial since I was first diagnosed with Multiple Sclerosis in 1994.denial You know: I can do blah, blah, blah, because I’m really not that sick, and when that didn’t work, sheer determination was used. And I know I am not alone. So how are we MSers to know when this approach of denial or determination no longer works for us? Confession: my brain told me early on that this new job of school bus driver would be too much, but my heart said, “No”. My heart said, “Keep going, look at all of the ways that its been good for you. Everything will be fine. Give it more time, and whatever you do…don’t quit.” Well, at the end of the day, my brain won. My heart was a punk and simply gave in…literally.

Due to my heart “thing,” Takotsubo, described in my (click here) last post…I had to make the decision to resign from my new “almost job” effective immediately. I say “almost” because I was still in the training phase and was JUST about to move on. THEN, I would have been a school bus driver. Truth is, my Takotsubo was a gift. It took the decision regarding whether I could handle this level of stress out of my hands. I’d worked for the last 5 months changing every aspect of my life so that I could re-enter the work force. This, evidently, was not the best portal.

Listening to our bodies is the answer to the first question asked: How are we to know when the strategy of denial/determination is no longer working for us? If you’re not paying attention, or if you don’t trust yourself and your feelings, then maybe your body will yell at you like mine did.

It’s time to get back out there with a new sense of determination. determinationI’ve learned that not giving up means not settling for one or the other. It’s whatever works best at the time. As long as I’m listening to my body, I don’t ever have to decide.

COMMENTS: Have you found yourself reaching a goal due to either of these strategies? Have you found yourself attempting to reach a goal and ultimately having to give up? Did you start with something new? How did you do that?

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MS: Hug, Heart Attack, or NEITHER!

You heard me. Neither! I went blazing into the emergency room and it was neither.

WTH is Takotsubo. Commonly called Broken heart syndrome?

I’ll tell you, it’s something that feels, looks, and sounds like your neighborhood HEART ATTACK.  Which is by definition: blockage in the hearts arteries. Well, like I said on the table…I’m not having a HEART ATTACK! I’m a Vegan! OK, I’m sure there might be a Vegan somewhere in the world that has had a heart attack, but I’m not the one. Let me remind you…I have MS and that is WHY I’m a Vegan. Not that I think my dietary choices will cure MS. I make those choices to put myself in the best possible position of good health, if anything else arises. There will be no clogged arteries, obesity, heart disease, diabetes, etc. So when Mr. Nurse kept barking heart attack…I KNEW HE WAS WRONG!

There was however, the little problem of my lower left ventricle not pumping properly, like there was something blocking it, but there was nothing there. Hell at this rate, I coulda had the cheesecake after all!

MS Hug is a symptom of MS. It presents as much like a heart attack, as the real thing, chest pain and all. The pain can extend around one side or the other, or completely “hugging” the torso. I’ve had this to happen a few times over a three week period, off and on (click here to read that post). The very first time, I sat in my car in a sweaty, breathless, panic. I told myself to relax and that this was NOT a heart attack, it was that “Hug” thing I had heard about. In hindsight…that was a dumb move. What if it had been a heart attack? I told myself that the next time it happened I would go to the emergency room just to be safe. Glad I did.

Now let’s talk Takotsubo. This condition has only been recognized for the past five years. It is stress induced and 90% of all cases are postmenopausal women. Menopause reduces a womans estrogen and estrogen is known toplay a part in protecting the heart. These women now become particularly vulnerable.

There you have it. I experienced Tako…you-know syndrome.

I started asking around. Three women that I know have experienced this and they had no name for it. My general practitioner admitted that she had to look it up. She had never heard of it either.

That’s me…a real Trail-Blazer!

thaufire

Links  to information you may find helpful…I did!

Mayo Clinic-Heart disease in women: Understand disease and symptoms

Mayo Clinic-Hormone replacement therapy and your heart

Comments: Do you know of any women who may have experienced Takotsubo?

Have you experienced an MS Hug? Tell me about it.

 

4 Comments

Filed under MS Symptoms, Stress Management

MS hug or HEART ATTACK!

MS Hug or Heart Attack?

1:30 Home for lunch,  going back to work.

1:31 Heart pounding, chest pain

unnheart2

Ultrasound of my heart.

1:35 Left arm and hand hurt, radiating pain left from middle of back.

1:36 Pain increasing, using right hand to support left hand for relief.

1:36 Thought …WOW this hurts a lot. I’m okay, relax, take deep breathes. Back to work. Simple afternoon planned. Go.

1:50 Leave for work.

1:54 Nauseous, driving. Pull over. Pain sky rockets, call husband. I’ll be home, take me to the emergency room please.

2:06 Emergency room. Wheelchair.

2:08 E.R. check in, Husband gives insurance information and symptoms, parks car.

2:11 Toddler staring at me from Dads arms. My pain must look very scary to her. I force a smile.

2:12 Enters Rapid Response team. They whisk me away

I HEAR:EKG

I THINK:EKG not invasive. Sticky things on chest. No pain. Pain now …waaay over the top.

I HEAR:Heart Attack, Morphine, Nitroglycerin

I HEAR: Have you had any aspirin today? Swallow these.

I FEEL: Shirt coming off, sticky things going on.

I HEAR: Heart Attack.

I SEE: Husband listening to nurse.

I SAY: What do you mean HEART ATTACK? I’m not having a HEART ATTACK! Honey…this hurts.
I HEAR: You’ll feel better soon, morphine, nitroglycerine, Heart Attack.

I SAY: I can’t be having a heart attack, I’m a VEGAN!

I SEE: Mans unfriendly face close to mine with paper in hand.

I HEAR: SEE THIS! This says, in all ways, you’re a VEGAN having a HEART ATTACK!

I THINK: Screw you.

I SEE: Friendly face very close to mine saying, don’t worry, you’re going to see LOTS of people in the room doing LOTS of different things. It’s okay, just relax.

60 seconds later my clothes evaporate.

I THINK: WTH!

I SEE: My jeans moving toward my feet. No snaps, no buckles, nothing.

I THINK: OMG! But wait…my panties?! What if my period is on?

I SEE: Panties floating away, still inside jeans. No period. Thank you GEEZUS! Hello menopause.

I HEAR: Arteries blocked/ look inside/ heart working? Heart attack

I SAY: How?

I HEAR: Catheter/ groin/ artery/ heart/ look.

I THINK: Chest/sternum/ not cracked open /okay.

I SEE: New face, friendly, close to mine.

I HEAR: I’m Scott. I’ll be your bartender for the rest of the day.

I THINK: Morphine. Smile.

I SEE: I’m covered with a sheet.

I FEEL: Levitated.

I SEE: My toes, my husband, Scott, random people in hallway.

I SAY: My toes are really pretty. Honey, I need a toe ring.

I HEAR: Nothing.

I Feel: No pain.

heart. cathetermed

Can you see the catheter in my heart? The hook. Look closer. AWESOME

MS HUG or HEART ATTACK

Comments:

Have you ever experienced either?

What do YOU think it was?

18 Comments

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MS: You make me wanna “Sweat Like A Girl”!

A few weeks ago, I went to a very nice dinner hosted by Gilenya at “The Marble Head Chowder House”. A Neurologist and MS Specialist spoke for a short time about MS and then for an even shorter time about one of the new disease modifying therapies, Gilenya. It’s a pill that has pretty much the same efficacy as all the others pills, however it’s one pill a day, not two.

For half of a second my interest was peaked, and then they mentioned its heart concerns and the special care that must be given when first taking the drug.

Hmmmm, maybe not :/

If it ain’t broke, don’t fix it. Sure my Tecfidera is twice a day but I’ve had zero side effects and if I did, heart health would not be one of them.

I did however, meet some really nice people. There were sisters who both have MS; talk about partners in crime. Another woman who brought her 2 siblings so that they could have a better understanding of the disease; I can’t take ALL of my siblings anywhere all at once, it’s too embarrassing. There was one other woman who like me, brought her husband. That couple talked a lot about Hippotherapy which I found fascinating. They convinced me that it was beneficial! I wish I could convince my Insurance Carrier of that.

All in all we had a great night! I think we should get together again and have a mini support group. Next time we should meet somewhere more exciting…I dont know, maybe for a class at “Sweat Like A Girl”. It looks like fun. I’ll let you know how it turns out.

We_Can_Do_It!Comments:

 

4 Comments

Filed under Mind-Body Connection, MS and Exercise, MS and Oral Medication, MS Drugs, Uncategorized