Category Archives: LOL-Day to Day

The dailies for this life of learning.

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MSLOL Blog Radio- MS Activated!

It’s tomorrow!

Now consistently the first Monday of every month- “Tune” in MSLOL Radio!
Show 5: MS Activated!
Join us on Monday, February 7th at our new time (8pm EST) when you will meet two amazing women who took their diagnoses, put them on placards and marched until their voices were heard. Rachel Dykoski and Fiona Hoey have worked tirelessly to do right by the MS community. Find out just how they represent and how their efforts impact each and every one of us from the “living with it” delegation.

And call in! We love to hear from the MS community at large. Make your voice heard!

CALL IN LIVE (714) 510-3712 & PRESS 1 TO TALK!! or

Listen to internet radio with RaeFlectionsMe Radio on Blog Talk Radio

Here is the blog talk radio site. If you “follow” you’ll never miss a beat!

And here is the blogspot for yet more info.

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Whatcha doing Monday* night?

I know I know! You’ll be tuning into the fourth MSLOL Radio show.

So mark your calendars, set your iphone, pda, blackberry or your old school alarm clock. Whatever you do, don’t miss this show. (Of course if you do, you can always go to blogtalkradio and down load the podcast- or listen on your computer while you are doing less significant things.)

(*That’s Monday January 10, 2011 7p-9p EST)

Giving it Back~
Each of us living with MS has a roadmap. And while our original destination changes with every turn–– we navigate the journey in different ways.

In the two+ decades I have been living with MS, I have met some amazing individuals. These are people have taken their MS and are using it to give something back to our community. They have taken a journey they never could have imagined on that day none of us will ever forget.
Please join us for an inspiring show with guests Rick “Sommers” Steinhaus and Marni Blake Rothman.
You’ll have to tune in to learn more about them!
In case you missed it and don’t feel like scrolling up…

Monday January 10, 2011 7pm-9pm EST

You can listen via the Internet:
http://RaeFlections.me/
http://mslolradio.blogspot.com/

Or call from your phone:
(714) 510-3712

Think of it, you can be doing any number of things while you tune it. Grocery shopping, exercising, planning to exercise, folding laundry…

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Surfacing~

I’ve been trying to come up with the words to describe this for months; though come to think of it, it’s probably more like a year. This inexplicable thing has been bouncing around my head, periodically coming together to make a sentence and then falling back into individual words that I can’t remember or feelings I can’t explain. It seems fitting to have this figured out before the year’s end. (Which happens to be moments away.)

So here goes:

For me, living with MS is a fluid experience. My changing abilities wash over me like the tide and leave me disoriented. My body defines and redefines itself with the ebb and flow of my disease and my emotional response is a balance of denial and strength. The current pulls me around as I’m dodging fears and rising to the challenges to keep moving forward. I search for solid ground to find perspective. But until I get there, I forget what normal is.

Each day rolls into the next with changes that are often very subtle. And after more than two decades with MS, I have learned to accept what is for the day, the week, the month. I don’t spend a lot of time examining the specifics of how I feel. I just cope. And part of that coping is to avoid looking at the big picture. While “I’m soaking in it,” I can’t see what may be obvious to others.

See how confusing this is? I feel like I’m contradicting myself! Ok, let’s back up a bit.

My symptoms fall into two categories. There are those that I’ve dealt with on a daily basis, since I was diagnosed. Many of them are manageable with my prescriptive cocktail, others I have learned to live with.  For the sake of the metaphor, let’s call those symptoms Barnacles. The second category consists of the symptoms that come and go and come and go. Let’s call those Shells. Oh wait, did I say two? There are actually three categories. The third is the attacks. (Okay, I could go all shark metaphor here, but won’t over-do it!) The sudden onset smacks me with an unexpected wave and leaves no question about what is or isn’t usual. And while I am afraid that some of these new symptoms may go barnacle, I rarely lose sight of who I am outside of the relapse.

So, here are some examples of the parasitic barnacles I live with. Including, but not limited to: foot drop, difficulty walking, dizziness, poor balance and hmmm, what are those other ones… oh yeah, incontinence and an inability to pee. How could I forget them!?! These tenacious little buggers have been clinging to me for so long that I can’t remember a time when they weren’t a part of my everyday.

So you ask, how does this fit in to the inexplicable-thing category? It’s those elusive shells. They roll in and roll out and as I chase them up and down the beach, the water overtakes me and my defensive denial kicks in. Leaving me even more dizzy than usual. When I finally resurface, I can’t tell where I am.

I’m getting lost in metaphor. Maybe a real example will better convey what I’m trying desperately to say.

This year I noticed that I couldn’t stand for very long. The amount of time required to load the dishwasher or heat up a microwave feast eluded me. And because it came on so gradually, I barely noticed it happening. As the months went by, my standing time continued to decrease and all of a sudden I stopped and scratched my head. Have I always been this way?

From the outside this must seem ridiculous. How could I not know that this debilitating symptom is out of the ordinary? As I speculate further, I find myself standing in moving water. The next thing I know I’m submerged in a tide that was at my ankles a few moments earlier. And as the water touches my chin, I tread, trying to figure out who and where I am.

It’s usually my husband who reels me in. He helps me find perspective without lingering on the thoughts that are counter-productive in my coping. Realizing that this symptom isn’t a barnacle, set off internal fireworks over the Hudson.*

So the year is at its end. The next one is imminent and as is the case for all of us, I have no way of predicting how the tides will turn. Maybe now that I have the words all together in one place, I will be less likely to go adrift again. Though I must say, denial, when used reasonably, can be a very comfortable flotation device.

*Oh, and btw, “my long-standing-ability” has greatly improved or “How I learned to stop worrying and love the Ampyra.” Does anyone get that reference?)

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The MSLOL-Radio — the lost recordings!

It’s finally here! The recordings of the first three shows in one convenient place! 😉

In keeping with the Variation on a Theme series, in the first three shows you will meet four different individuals living with MS.

In the first show we met Kim Gledhill – a painter, graphic designer, writer, spiritualist, mediator, mom and a premonition-ist.

Our second show highlighted Vicki Bridges, a writer, a mother and an MS advocate.  She was diagnosed with progressive MS in the late 80s but, like so many, was experiencing symptoms long before that time.

And most recently, we met Larissa Nusser-Meany and Michael Weiss. They are motivational speakers who bring their message of healing yoga and empowerment to the MS community across the nation.  Both living an inspired life with MS. And check this out: I am so inspired that I’m doing yoga daily! (for 2 days and counting!)

The next show is on December 27th with guest Marni Blake Rothman and Rick Steinhaus Sommers. Tune in at 7pm (EST) at 714-510-3712 to learn their variations and inspirational approach to what they are living with.

Looking forward to hearing you there!

Listen to internet radio with RaeFlectionsMe Radio on Blog Talk Radio
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MSLOL-Blog Radio: Yoga and Motivation and Inspiration, oh my!

As you are recovering from your TG over-indulgence, tune in to what promises to be an awesome MSLOL-Blog Radio show!  You’ll meet two remarkable people living with it. Larissa Nusser-Meany and Michael Weiss have taken their MS diagnoses and found a way to help the rest of us cope with our lot.

So wipe the cranberry sauce from your chin and mark your calendars to call in to MSLOL-Blogradio Monday, November 29th at 7pm. You’ll have a few more items to add to your list of what to be “thankful” for.

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Try to Remember~

When I took my daughter to her first singing lesson it all came rushing back. As she moved through her warm up scales, I leafed through the sheet music she had selected. For her, the songs of Wicked were a no brainer; she had just learned them at her theater camp this past summer and she already knew the words. Singing show tunes after scales was not something I had to Try (hard) to Remember. While watching her I remembered me- the pre-MS me- and “this ability” that didn’t change after my diagnosis.  It was here all along.

When I was a girl the music of Broadway was always vibrating through those cheesy fabric speakers on the console that sat on our green shag rug and took up no less than 6 feet of horizontal space. My parents loved this music and they played the albums until the grooves wore out. (For those of you under 30, that is a reference to the vinyl discs from olden times.) This comes as no surprise being that my mom’s dad (GP Aaron) was smitten with the musical and my mom grew listening to the  score that I knew so well.

Pippin, A Chorus Line and The Fantasticks were the soundtrack of my childhood. My sister and I knew all the words to all the songs and danced around the living room singing them at the top of our lungs. Though we only went to a handful of Broadway shows (A Chorus Line, Annie, La Cage aux Folles and of course Cats) that music was the fiber of my original family. And to this day my sister and I will break into song when a word prompts us, much to our husbands’ chagrin. 😉

In addition to a love of music those shows taught me some very valuable lessons. The first and perhaps most timely, was from A Chorus Line. “Hello 12, Hello 13, Hello Love” was a great conversation starter about the facts every pre-teen wants to know but is afraid to ask. La Cage introduced me to transvestism, an understanding made more complete a few years later when I saw Rocky Horror Picture Show. (Also a musical!) I recited the poetry of TS Eliot to a tune and learned about the travesty of war diluted by dance and song. And I’ll always remember the tiny play in a tiny theater on Sullivan Street where I found an instruction manual for sneaking around your parents to be with that first love. (Now that one really spoke to me!)

In spite of my compromised self image I continued to enjoy singing in the years that followed. When I entered high school, I immediately joined the choir and a year later auditioned successfully for both the acappella and treble groups. Of course by this age I could no longer find the reckless abandon that my living room afforded me. I was firmly positioned at level-8 on the insecurity scale of 1 to 10 [10 being most insecure :)]. And even acceptance into these advanced choirs didn’t help me feel more self-assured. So I took singing lessons hoping to find confidence. Clearly the issue would more likely have been resolved on a the couch and not next to a piano. Wow, I hadn’t considered that self-esteem indicator until I wrote these words. (note to self: call therapist!)

It wasn’t until I moved out of my house that I realized that not everyone grew up with a love of Broadway musicals. It’s funny how that works. We take for granted what we were raised with, assuming it’s standard fare. It was never more evident than when I was hanging out with college friends and after someone said “One” I launched into a very loud “….singular sensation, every little step…”  (crickets) Not the harmonic response I had expected. Just a silence filled with the wide-eyed looks and lifted eyebrows punctuated by an “alrighty then.” But all the while I could hear Grandpa Aaron singing in my ear; a voice of approval for this mutual love that he passed down to his daughter and she to hers.

In the 22 years that followed I never thought of singing again. Not once. Maybe it was because I was distracted by my MS can’t-do-list which was growing and after all, singing never held a strong position on my can-do- list.

But recently, I’ve learned that I can do more “performance” than I could even have imagined. I now host an MS radio show, write a blog and am the outspoken founder of the non-profit, MS SoftServe. Once its live it will be the first individualized learning website that grew out of the Master’s degree I never thought I was smart enough to get. Ironically, with MS I have found an expertise that has ultimately given me a confidence I never knew possible. And it only took me 23 years to get to here. 😉

Madeline and I are sharing our lessons. Every week we sit in the spotlight of a tiny room with carpet on the walls; singing a song that doesn’t require a stabilizing arm, a walking stick or the ability to be balanced. And my limitations are left outside the soundproof door.

Finding my voice as 42 year-old woman, living within the restrictions of MS for over two decades, is empowering.  I’m no longer afraid to get up in front of that audience and I have finally found, that something special that Madeline and I can share; one that doesn’t ask more of me than I can handle. And wouldn’t you know it- it was there all along. After all of these years I can now see that I am the “one” I’ve always sang about in a song that transcends time.

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MSLOL Radio: Part Deux!

Please join me on Monday, October 25th at 7pm for the next episode of MSLOL-Radio!* This blogradio show is a companion to this blog. We are so excited about a brand new series that will start with this show. (Hey, It’s the second episode – gotta keep things fresh!) 😉 It’s called VOAT: “Special Guest”.  Being that each of us has our own unique version of MS we are all a Variation On A Theme. And while we have some common ground, many of us never experience what others do.

This ongoing series will highlight one unique thread that is part of the MS tapestry.  I’m hoping that in getting to know each other, we can expand our understanding of this disease. We will hear about our guest’s version of MS, her (his) day-to-day experience and those tried and true coping mechanisms.** I have little doubt that no matter what version of MS you are living with, there will be some part of these stories that you will relate to.

In this episode we will speak to Vicki Bridges. You may know Vicki, a writer  at Health Central’s MS site. She is also a mother and an MS advocate. (to name just a few)  She was diagnosed with Progressive MS in the late 80s, though she was experiencing symptoms long before then. She will tell us about her challenges, triumphs and where she finds the strength to endure. Hearing Vicki’s story will add yet another piece to the  puzzle that is the MS Community. She’s a very interesting woman, and I know you will enjoy meeting her.

This riveting interview will take place after my introduction, a “food for thought” moment and a progress report of MS SoftServe: The first website that will be customized for our unique needs. (And that’s not all! For just $19.99 you will also get…) We will then “Speak to the Peeps!” So call in and share your thoughts; “represent” your version of this insidious disease!

I look forward to “seeing” you there.

* MSLOL= Multiple Sclerosis- A Life of Learning~

**If you are newly diagnosed or just working to avoid overwhelming information that may having nothing to do with your course, I get that. I will preface of what is to be discussed before each segment starts. That way you can opt out at any point.

These links will bring you the blogradio page that includes instructions on how to log on to the program.

http://mslolradio.blogspot.com/

Fan Page on Facebook

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What is that word(s)?

Don’t you hate it when you have something to say, it’s right on the tips of your fingers, yet it remains elusive? Elusive is such a great word,  don’t ya think? But it isn’t the one I’m looking for!

Please check out my post on MS Health Central that goes in to stunning detail about all of the words I can’t find and as a result tells you all about MS SoftServe. 😉

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I Can’t Wait ’till My Colonoscopy!

A month ago I started experiencing a problem that had nothing to do with MS and I can’t even tell you how exciting that is. I generally steer clear of scatological talk (cause lets face it, it’s disgusting!) but for the sake of this discussion I must explain that my “problem” brings to mind a Niagara Falls metaphor.

Having symptoms that change as fast as Facebook status updates, I’m very aware of what I feel when and for how long. After five days with this unfortunate experience, I went to my GP. She sent me for blood tests and x-rays and then to a gastroenterologist who sent me for a cat scan, and now I have a colonoscopy on the calendar. Apparently I have “mild, non-specific swelling in the lymph nodes of my abdomen and groin” (isn’t groin an unpleasant word…kinda like spleen or bile). So I’m curious what is wrong and hope that it has something to do with my abdomen sporting the pregnant-chic look; but the investigation and not knowing doesn’t faze me. Being poked, prodded, tested and schlepping all over town for the right specialist to bring test results for reassessment isn’t foreign to me. And I have no doubt I will be fine. But the surprising part of this experience isn’t the blasé optimism I’ve so easily found. No. The part of this that has me sitting with my jaw slack-and-agape is that this is the first time in my adult life that I’ve had a health concern that isn’t MS related.

As a woman who has been living with this “nobody knows why” disease, I have learned to accept what is, and not throw my hands up in the air with every new symptom. But look at me now! I have films and digital renderings that correlate with my symptoms. Did you follow that? I have symptoms that actually reflect what is going on in my body. Look! It’s here, here and here on my catscan! This is a totally new experience for me. MS is an amorphous disease. It’s often hard to describe a symptom and it can’t be pinpointed on a scan. While MRIs are an amazing diagnostic tool, they don’t provide a map to the symptoms that impede my ability to function everyday. No one looks at my annual MRI and says “Hey, this scar here is why you can’t walk far; this one is why you are incontinent and have regular bouts of pain and this is the pesky little guy that makes you dizzy all the time.”

So, here I am, reclining on my flexible office chair with my hands behind my head, smiling. Of course I can deal with this. It is actually fun. But in the midst of this bliss I find myself glancing around to make sure no one is looking at me; sitting with the sad, pointless speculation of what my life could have been had this been my first major health issue. Of course I shake it off and look to the more positive aspects of being me, while trying not to lament my summer reality that I can’t really leave the house unless it becomes unseasonably cool, that I’ve been taking so many medications for the last two decades that I have to carry around those little plastic reminder cases and that I struggle with the fear of the unpredictability of doing errands alone.

I take a moment to mourn this loss and then I go back to the bliss of a health problem that will very likely be resolved. And while I’m there I breakout the list of things that make my life full and fabulous. Cause lucky me! I got a bunch of those. And at this moment, the best part is that I will count down the days until my colonoscopy when I will likely learn exactly what is wrong with me and how to fix it.

I am so excited.