My Sun Still Rises

A short while ago I took a break from M.S.  I didn’t have a choice really.  Another, more powerful, force than the disease began to consume my life, filling me with grief, despair, fear, humiliation and a pain that neither cancer nor Multiple Sclerosis ever imparted upon me.  “The hubby”, as he has been endearingly referred to here in so many posts, and I have separated.  The very unexpected story, the pain, the details are all too private for this place and out of respect for our families I shall keep those details vaulted away from my virtual life.  A pancake, no matter how thin, always has two sides, doesn’t it?

This blog is called Sunshine and Moonlight: A Journey with Multiple Sclerosis. Don Williams Jr. once wrote:   “The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination.”

When I read that quote once again, I realized that my path here in “The Sunshine” has ended, but my journey has really just begun.  These virtual pages carry too many bittersweet memories.  A crossroads has been reached.  For my writing to continue to benefit myself and others, it has to come freely and be shared in a serene environment.  “The Sunshine” no longer provides that for me. 

However, after tens of thousands of unique hits to this site, the story is still important.  The lessons learned in the first two years of a life-altering diagnosis just can’t be erased.  Sunshine and Moonlight will continue to exist as a resource and I hope a help to at least one or two people every day.

Today, I invite you to continue this journey with me, just in a new place, a different place.  So much of the story has yet to be told, has yet to even be designed for me.  “My Sun Still Rises” is my new home and you don’t even need MapQuest to help you get there.  Just click HERE or on the title above and join me as the journey continues.

When the Spark Fades

When I started this blog ages ago, I promised to be honest and sincere about life with M.S.  – all of it.  I threw my heart and soul into my writing – not only to help others, but also as a method of therapy as I adjusted to this new life. 

Today, as I sit in front of my laptop, just three months shy of my two year anniversary of my official diagnosis, re-reading stories and comments (as suggested by my 17-year-old stepdaughter), I’ve realized just how immersed I’ve become in a life with M.S.  I haven’t written much lately, not only because I’ve been busy, but because I’m going through some major life changes that are a little too private to write about on the blog.  The changes may be tied to this immersion into a life with M.S.  or might not.  Now it’s time to immerse myself into finding the answer to that question and a few others.  

A long time ago, right when I was first diagnosed, I “took a day off from MS” to remember everything else in the world.  I think it’s time to do that again, but perhaps for an extended hiatus.  While the Sun isn’t shining brightly, it’s still there, but I’m wondering if I let M.S. take so much control that some of the spark has faded; perhaps always so fearful of what tomorrow might hold that I shyed away from living today just in case.   Maybe it was all the life stressors that are written about throughout these virtual pages.  Maybe it’s a combination of both. 

Regardless, I’m entering a time of re-evaluation and introspection that will likely preclude me from sharing my new stories until such a time that I can honestly and openly share with all our loyal readers.  To do anything less would be a complete farce and a dishonor to this special place that has been shared with people from throughout the world.

In the meantime, Sunshine and Moonlight remains here, because every day hundreds of new people visit the site to learn about life with MS, especially the newly diagnosed.  If you’re one of those new people and have reached this somber-toned article, just realize it’s part of a 21-month journey that continues.  You’ll find lots of laughter and heartwarming tales inside and hopefully a little help and guidance along the way.

For those loyal friends and supporters, when you look up to the Sun, hold a good thought for me as I try to find a new path and direction that hopefully leads me back to a place that many once loved and wanted to be a part of.

Be well all my friends and I shall return when I can,

Sunshine

Wearing Luca Brasi’s Cement Shoes

An article has been brewing in the Sunshine for some time.  It’s been a difficult one to write because it means that it’s time for me to address a serious issue that’s arisen for me during this journey with M.S. 

The best way to describe what’s been happening is through a comparison that perhaps some of my Italian in-laws would use.  In Italian lore (or perhaps with some truth) during times of mayhem, certain individuals would be disposed of by attaching cement “shoes” or blocks or other heavy objects to their feet, and then tossing them into a body of water to “sleep with the fishes.”

A few months ago this vision came into my mind as I tried to explain a new phenomenon I’ve been encountering: it’s as if I’m walking through life wearing cement shoes.  I’ve delayed in writing about it because once it’s out there it’s real.  But it’s time to share because I’ve come to learn that many others suffer from similar dreams of the Sopranos or the Corleones invading their footwear.

While some days my stride is normal, on many occasions I have noticed that my legs are heavy, like the massive cabre logs I watched giant men toss around like pick-up sticks during this past weekend’s Scottish Games on the campus where I work.  The feeling of heaviness impedes my ability to exercise, my ability to climb steps comfortably, or my ability to cross one leg over the other while sitting without the use of both of my hands to lift the leg and place it upon the other.   It’s exhausting when the cement shoes come into play, causing me to expend twice the energy to walk from the garage to the house. Sure this causes me to fall down more frequently; my torso moves along through life much more quickly than the motors below it.  Perhaps this is what immobility feels like? I’m uncertain because I’ve never asked someone to describe it to me.

I often feel, on these Moonlit days, like an individual on two, metal crutches, seemingly just dragging my legs along behind me.  The crutches don’t exist, of course, so as usual, to most I look normal, albeit perhaps more winded or a little bit slower. 

So, where does my newfound cement footwear fall on the “M.S. scares the daylights out of me scale?”  For, me it’s way up there – closest to the top.  It’s above the loss of vision I suffered some 21 months ago.  It’s far above the neuralgic pain, the tingling, the vertigo and the cognitive issues.  So far, this side effect of life with M.S. has scared me the most.  It appears without provocation, although I do notice that overuse of my muscles one day may lead to cement-foot shortly thereafter.  It’s unpredictable and disturbing.  I can’t help but think of my future each time it arrives.  And nothing seems to help.

There isn’t a medication to ease the feeling.  So instead I’ve taken it upon myself to work diligently to lighten the “load” naturally.  I’m not a rocket scientist (I just happen to work for one) but common sense tells me that if I reduce my body weight, perhaps the fatigue won’t hit so hard as I drag the lower half of my body around on the pavement.  On days where the load is less noticeable, I spend time walking and using my exercise equipment at home.  Perhaps strengthening the muscles will provide better support and stamina when it’s needed.  I need to work out now, while I still can. I’m fighting muscle atrophy, trying to stay strong – not just for my legs, but also for my spirit.  

The fictional character, Luca Brasi, from the Godfather, died from a garrote to the neck.  While cement shoes never were attached to his feet, Luca Brasi definitely sleeps to this day with the fishes.  I’m still considering taking up swimming as another way to strengthen my body.  I just want to be sure I’m swimming in a chlorine-filled pool and not one filled with salt water and nibbling fish in a feeding frenzy.

Will M.S. Kill Me?

It just breaks my heart that the title of this article is the number one search phrase that landed visitors to Sunshine and Moonlight within the last 30 days.  In a way though, I’m happy that these searchers landed here – a place that promises to be positive without mindless optimism.  But none-the-less, while checking my blog stats this weekend, I was saddened to be reminded of how those newly diagnosed with this terrible disease feel.

I remember those days in the hospital, those three, long days while waiting for an official diagnosis.  I remember going through every test imaginable and breathing a sigh of relief when hearing the negative diagnosis that followed each (no brain tumor, no pituitary tumor, no heart problems, no clots or blockages, no stroke and on and on).   Since everything else had been ruled out, I knew in my heart of hearts, by the end of day two, that I was going to hear those words: “You definitely have M.S.” by morning.  And, that’s exactly how it all played out.

As I’ve told the story numerous times before, my laptop was with me at the hospital, so by the evening of day two, I began a little bit of research.  I, too, wondered (if it really was M.S.) if I would die.  I wondered if I’d end up in a wheelchair.  I wondered about my future.  I was scared beyond a level fathomable to my mind or my body.  At least when I had cancer, I knew my prognosis and what I needed to do to beat the thing.  Everything I read about M.S. shouted “UNCERTAIN FUTURE” to me.

While checking up on my recently neglected blog, I then read a comment from “Lani” on the article about the Spoon Theory.  She wrote: “I live with permanent brain damage (brain stem) and although to many people I look and sound ‘normal’ and ‘undamaged’ spoon theory absolutely describes what each day is like for me as well. So often other people’s attitudes toward those of us with disabilities are the hardest things to deal with. Referring them to spoon theory is extremely helpful in their gaining some insight into what each day is like for so many of us.”

Lani speaks for so many of us, doesn’t she? I only hope for a day when those who suffer from permanent brain damage from M.S. can go through life without the challenges facing them.  The only day I hope for more is one where no one, ever again, visits the internet to ask: “Will M.S. Kill Me?”

They Ride Because the Can: They Help without Knowing How Special They Are

Just over a month or so ago, on the campus of Edinboro University, some 1,700 bicyclists participated in this year’s Escape to Lake, a daunting bicycle ride throughout the Lake Erie region, all to raise funds for M.S. research and patient services.   Several of my co-workers and my niece rode in the event that is just one of the many Bike MS events across the country each year.  I was proud that my university, my employer, was hosting a leg of the journey.  Many of those with M.S. who couldn’t make the long journey, volunteered along the way or assisted in the pre-event planning.  Somehow my emailed notes of thanks and donations to help the cause, just didn’t seem enough of a thank-you for all that these great people did – and do – every year to help people like me who have Multiple Sclerosis.

I wondered how many of the 1,700 knew someone who suffers from the non-curable, life-altering disease.  I thought some might just be big-hearted and generous cyclists who wanted to participate in what they felt was a good cause. 

Then, today, I read an article about a fella named Brian Hahl, who has been participating in the Lehigh Valley Bike MS event for two decades.  When he first started biking in the event, he didn’t know a single person with the disease.   Of course, over the path of 20 years, Hahl met many such individuals, as he became a tireless fundraiser for the cause.  Unfortunately, Hahl died unexpectedly from a heart attack as he prepared for this year’s ride.  In his honor and in the honor of those 1,700 individuals who rode through my region, I share his story today as well as a public moment of gratitude.

_________________________________________________________________________________

Tireless fundraiser for MS, and inspiration, dies

before 20th bike fundraiser

July 11, 7:52 PM

He didn’t have Multiple Sclerosis, but he believed in the cause. When Brian Hahl first rode his bike for MS fundraising, he didn’t know anyone with MS. But, now as he was embarking on his 20th bike ride fundraiser, the New Jersey teacher died suddenly of a heart attack.

Hahl, 50, died July 9 of a heart attack as he was preparing for a long bike ride.

His friend, Jim Durham, a 58-year-old man with MS who was encouraged last year to ride 50 miles alongside Hahl last year, said, “He completely inspired me. He urged me to keep going. He pushed me to ride when I said that I couldn’t do it, He knew that I could do it, and I’m so grateful to him for that.”

Hahl was ready to ride in the MS Milestones for his 20th consecutive race. He helped inspire those with MS who didn’t think they could always do it.

“He was just a good man with a good heart, and his students absolutely loved him, just loved him,” said Linda Ruzanski, who has Multiple Sclerosis.

Durham, who is also a teaching colleague and friend who planned to ride alongside Hahl, said Hahl’s teammates will now be riding in his honor They will be riding 150 miles this time.

Hahl was planning to lead the Lehigh Valley-based team in the National MS Society’s annual PA Dutch 2009, which is expected to raise $325,000 to battle the chronic disease.

Ruzanski recalled that Hahl looked forward to the event every year, and worked hard to raise money and awareness to fight the disease.She knew him for 24 years.

When Hahl first started riding in the National MS Society’s PA Dutch event, he did not know anyone with multiple sclerosis, nor had he even ridden a bicycle seriously before.

Now, he is being remembered and honored for helping out in a cause that he really had no stake in, but he developed friendships with people who have the disease who will carry out his memory.

Author: Mike Szymanski

Mike Szymanski is a National Examiner. You can see Mike’s articles on Mike’s Home Page.

All This Getting Healthy is Going to Kill Me!

I don’t want to end up using a cane or rolling around in a wheelchair.  If that’s my destiny, I will certainly accept it, but I won’t go down without a fight.  In addition to my fortitude on the issue of mobility, I’m enrolled in a new lifestyle improvement program at work called “HealthQuest.”  It’s a self-reporting summer program, whereby participants earn points towards various rewards for a variety of healthy lifestyle choices.  I can earn points for taking the stairs instead of the elevator, walking instead of driving, exercising (of course), eating right, stepping away from my desk to de-stress, and even for making someone’s day.  Both motivating factors are excellent opportunities to get out of my office, move my legs, and strengthen my body.

That’s if I don’t die from trying to get healthy first.

A week or so ago, just days before my delayed infusion of Tysabri, a colleague and I decided to walk all the way around campus (just a mere 585 acres) to check out our campus beautification project.  I almost didn’t make it back to my office – red-faced, struggling to breathe and to move my legs — and I was in sorry shape the day after.  My colleague told another that she was worried she killed me on that walk.  Nah, the tightrope of imminent death is all apparently part of getting healthy.  An oxymoron at its finest!

I try to walk somewhere every day, yet it’s still just as much of a challenge at week eight of the program as it was at week one.  Of course, persons will M.S. will remind me that the 80-degree weather probably isn’t helping my cause any. 

At home, I try to spend 15 minutes – at least three or four nights a week – riding my XL Glider.  Any kind of movement is good movement, my doctors tell me.  It’s all supposed to be fighting off that dreaded muscle atrophy.  Add in the fruits and vegetables I’m trying to inhale, the giant glasses of water, and all that positive thinking and one might start to think I’m a reformed woman.

I write this as I’m about to lace up my sneakers, head out in the sticky and humid air, to walk to a meeting and then on to a healthy lunch.  I’ll return wobbly-legged to the office, earning 5 or 6 points in the process and hopefully even more points with the mobility gods.

There’s a Reason We’re Supposed to Do It Every 28 Days

          People often ask me if I feel “better” now that I’m on Tysabri. Since I’m an official patient-advocate for Biogen Idec, the manufacturer of Tysabri, I’m completely honest and sincere with my response, but it’s normally the same response given each and every time.
          Tysabri isn’t designed to cure symptoms. It’s designed to stop the progression of RRMS and to prevent future attacks and life-altering brain and spinal cord damage. Despite this explanation, I also add that I do feel better since starting the Ty-Train more than a year ago. I notice that I have more stamina and seem to have a better quality of life. My symptoms, most of which I still experience weekly or daily, just don’t seem as terrible as they once were. And, as of my last MRI, I don’t have any new lesions on my noggin or spine. Sixteen lesions and holding!
          But there is a definite reason why we are supposed to be good boys and girls and receive our Ty infusions religiously every 28 days. I’m being reminded of this today and it’s not been a gentle reminder. I skipped my infusion this past Friday. It was unavoidable. I had to travel to Vermont and the TOUCH Protocol associated with the drug doesn’t allow us to have infusions earlier than every 28 days. I could have had my infusion the following Monday (only a three day delay), but then I’d throw myself off my late Friday afternoon “don’t want to miss a bunch of work every month because of my Ty hangover” routine. So, I’ve postponed the infusion until Friday of this week.
          By last Friday I was already showing the wear and tear of life with MS with deep circles and bags under my eyes. I think the pot-bellied pig in Vermont looked better than me. I slept a lot during our trip; the only thing that made my napping while on a pseudo vacation acceptable was that most everything in Killington was closed anyway. The hubby and I skipped the hiking and biking in the mountains and chose to relax at our resort instead. Upon our return, I went back to work, a little weaker than normal, but knowing that the Ty-Train would be in the station within days.
          Then my rude awakening hit today. It started with a dizzy spell in the shower (it’s been months since four, giant bottles of shampoo and body wash beat me up as I splayed myself out on the shower’s floor). Then it followed with a day of complete and utter weakness. If I didn’t know better, I’d think that pot-belly gave me the swine flu this past weekend. I was fortunate that today was the day my housekeeper visited. She made my messy home sparkling clean again and kept an eye on me in the process.
          It’s also been awhile since I’ve become mopey and whiney and teary-eyed about having M.S. All that self-pity hit this afternoon as I worried about the next two days – two, long, important work-filled days until that infusion. People with M.S. often pledge not to let M.S. run their lives. On days like today, when it takes all the energy in your body to hobble to the kitchen to make a PB&J sandwich, it can be hard to man-up and push on through.
          So, I spent part of the afternoon reminiscing in the Sunshine, reading old blog posts – posts describing similar days like today, all of which I survived, some of which I’d forgotten. I also reminded myself of the hubby’s mantra of IAR (it’s all relative) and decided to pick myself up by my bootstraps and to focus on the positive instead. Of course the text message from my stepdaughter, alerting me that she was coming to my rescue with chocolate peanut butter ice cream to wash down that PB&J sandwich didn’t hurt either.

Seven Amish Buggies and One Dead Pig Reprised

We already know that no two M.S. patients are the same.  Amongst all my other issues, I happen to suffer from serious vertigo and motion sickness due to the location of lesions on my brain.  Others don’t.  So, 16 hours over three days in a moving vehicle certainly isn’t my idea of a grand plan, unless the time spent moving happens because I’m traveling to see my step-son graduate from college. 

The hubby, perhaps the one person who really understands my motion problems (from 13 years of dealing with them front and center) planned a break in the trip to Vermont.  It was a break designed to give my noggin a rest and to allow us the closest thing to a mini-vacation we’ll see this summer.  Our 19 hours in Saratoga Springs, New York were wonderful.  The nineteenth century Victorian boutique hotel (hand selected by the hubby) was warm and inviting, filled with history and tradition.  The amazing Polo Panato Fontina E Prosciutto and superb wine selection at a nearby bistro wasn’t too shabby either. It was a brief, but much needed respite, from our crazy lives.

Could I have made the straight-eight from Pennsylvania to Vermont? Sure.  I did it on the way home.  But I’d prefer to avoid maxing out on the Dramamine and feeling the drug hangover for a day afterwards.  Breaking up the trip allowed me to feel great for the two days in Green Mountain country – as great as one can feel when in desperate need of a delayed Tysabri infusion because of the trip.

Readers may remember another recent trip the hubby and I took where he helped me work on my cognitive abilities with a little game in the car.  The game, now known for eternity as “Seven Amish Buggies and One Dead Pig” was reprised during the trip to Vermont.   You can only play the “find the letters of the alphabet on the road signs” game for so many hours, especially when there doesn’t appear to be a single sign in the entire state of New York with a word beginning in “Y” on it.  So we breathed fresh life into our other childish game, realizing that wherever we travel from here on out, this game will likely be our way of recording memories of our journeys. 

We saw neither an Amish buggy nor a dead pig on this trip.  So, from memory (as weak as it may be for me), here are the oddities that crossed our path this time around: 8 deer (nine if you count the one on the way home that I was just too tired to add to the list because I was definitely loaded up on that Dramamine for the ride back); 5 turkeys (not counting the one driving the car); 1 wolf dog (I think the hubby made that one up because I didn’t see it); 1 whistle pig (what my dad calls a groundhog or gopher); 2 horses’ asses (sticking out of a trailer blocking our view while playing the alphabet and the sign game); 1 barge; 4 cows on a very steep hill; 1 very sought after “Y”MCA (capturing the ever elusive “Y” in the alphabet game); a Bichon Frise named Harley; a couple of goats and their friend a black, pot-bellied  (and very much alive) pig; and the most amazing thing of all – a bagpiper, playing “Scotland the Brave” outside of our room at the base of Killington mountain (amazing because the song is the theme song of the Scottish university where I work; a song heard almost daily around campus, played by our own bagpipers).

Suffering Over Status Updates

When I started my new job months and months ago, I posted an update here in the Sunshine letting readers know that my days of daily blog articles would be coming to an end.  There just wasn’t a way to do it all. I’ve written about missing writing.  I’ve labored over not being able to labor on my laptop. 

In these days of FaceBook and Twitter, I’ve relinquished myself to one sentence updates about my life’s activities in lieu of lengthy articles.  However, I’m a lame tweeter and booker.   My “friended” individuals or those who I follow through cyberspace always seem to come up with interesting, funny and engaging status updates.  I often have to think before I post mine.  Why?  Well, what am I going to say?

Kimberly Fabrizio….can’t feel her fingers this morning.

Kimberly Fabrizio…is fanning her burning shins unsuccessfully.

Kimberly Fabrizio…fell down again today, the sixth time in as many weeks.

Kimberly Fabrizio…is worrying about eight hours in the car next weekend.

People don’t want to read those types of status updates.  As such, it’s rare that I post my M.S. news or true status on FaceBook (the site I use most to network).  I stick to postings about the weather, life in general or I post quotes and thoughts that inspire me.

The hubby was teasing me this weekend about being a Gemini and possessing two, distinct personalities.  As we talked about the ‘professional’ me vs. the ‘child-like’ or ‘crazy Kim’ me, I laughed a little.  I realized that my Gemini-esque extends into my online life – as if I’m living two, separate lives in cyberspace as well.

Oh well.  If one wants to be a Gemini, it’s best to do it up right! Today I’m going to try to bring the two worlds together, introducing one world to the other.  We’ll then see what people really want to read about.  

If you’ve arrived here from FaceBook or Twitter and if you can’t figure out why my fingers are numb, my legs are burning, my shins and knees are cut and bruised, or why the heck someone would worry about riding in a car, take a spin around the Sunshine side of life.  Learn a little about Multiple Sclerosis today.  While it’s not a ’status’ anyone really wants to claim, more than 400,000 of your American friends and colleagues suffer from this uncurable, life-altering disease.

The Right to Petition

By Contributing Writer Needles ‘n Pens

As we enter this patriotic season, opening with the solemnity of remembering those who gave their lives to protect our liberties, and continuing on with the public patriotism of Flag Day on the 14th of June, and the carnivals of explosive color exuberantly celebrating Independence Day on the 4th of July, it’s time to exercise those rights of citizenship.

As Americans, we have the right to petition our government. We have the right to ask that our government not only provide for the common defense, but also promote the general welfare of our people.

We could toward that end approach the great debate over healthcare, a very broad topic indeed and likely to be lost in the myriad arguments pro and con. We might even advocate for improved and extended accessible public transportation outside of the big cities, where the rest of us live in our MS-compromised pursuit of happiness.

Or we could reach for a more attainable goal – we could petition the FDA to work as an ombudsman on our behalf in requiring that the effective but painful DMD solutions MS Patients must, with blind faith, self-inject be modified in the interest of care and comfort … that the caustic formulas within those syringes be amended to include some pain reduction … and that the medical personnel responsible for prescribing such punishing, unsupervised self-injected solutions be more available and personally attentive to the process and the patient’s personal need for consultation and consolation.

At the very least, we could petition an end to age discrimination in the trials of the seemingly more humane oral DMDs.

Our Constitution promises to strive for a “more perfect union.” Those who marched bravely and paid the ultimate price believed in the words of the document. They believed that our nation would continue to provide the best for our people, and were on the track to achieving the best for us. Our weaker, halting steps will still lead us there, one legitimate, humane petition at a time.

Or am I the only ungracious recipient of this painful, unattended, life-long solo treatment?