Carnival of MS Bloggers #154

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Multiple Sclerosis: The First Two Years

by Valéria at It's complicated.

What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.

I’m hungry.

I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.

Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me. And so I sleep.

I cry.

I remember crying because I was so fucking hungry but unable to get up and feed myself. I remember lying flat, limbs extended. Limp as a puppy, sobbing.

Sometimes I could make it to the fridge. I remember eating bread. Rolls. Holding onto the walls for support. Using my apartment as a walker.

I remember that when the disease hit it was nuclear. It obliterated me. I remember dreaming about 9/11 because my body identified with the collapse of those twin towers.

Whenever I was trying to do something difficult that required an extensive amount of concentration—like traverse an apartment, open a fridge, or take a piss—I would listen to my own breathing. To the silence.

I remember a stillness, a quietness that I’d almost never felt before and have almost never felt since (except on really bad days when, in class, I find myself again seeking out a wall to strategically hold onto in order to create the illusion that I’m not about to collapse–all of course while continuing to seamlessly deliver the day’s lecture on the present subjunctive, or vocabulary pertaining to zoo animals).

Crossing a street can be a victory. Taking a piss can be victory. I count my breaths. I listen.

I remember that for the longest time no human being touched me for any reason other than medical intervention. Nurses grasped my arms to insert needles or tie tourniquets. Doctors placed a firm hand on my back as I failed and failed and failed my Romberg’s test. Imaging techs gently guided my head into place for my 2 to 3 hour long MRI scans. The only touch I experienced was being strapped, tied, punctured, swabbed, infused, and physically manipulated. The worst is when they deliberately induce muscle spasms. I always beg for them not to deliberately induce muscle spasms. Please, please don’t do that thing. You know—that thing.

I remember having to do pulse steroids every single month for almost a year—along with thrice-weekly injections of Rebif—just to achieve something remotely like “remission.” The drugs demolished my immune system, leaving me with the blood cell counts of someone HIV+.

I remember being too weak to stand up after steroid infusions. Listen, I get 1,000mg of Solumedrol in 500ml of saline, — an assertion on my part which would inevitably cause the nurses to protest because “That’s more saline than normal. Why do you get so much saline?”

If you don’t give me 500ml of saline and infuse slowly over the course of 2 hours I will throw up.

“We usually infuse this in 30-40 minutes.”

Fine, then I’ll throw up.

“Fine. We’ll do it your way then.”

Fine.

They did it my way.

I remember leaving Brigham and Women’s at rush hour on a weekday and the #66 bus being jam-packed and me with a bandaged arm, glassy eyes, and an inability to stand and nobody—nobody—would offer me a seat. I remember sitting on the floor of the bus because I could not stand. I became stubborn in my willingness to sit down on floors, on the ground. Whenever I was out in public and became too fatigued to stand, I would simply sit down—wherever I was. Right there. Sit.

No, I don’t care who is looking. No, I don’t care what you think. I am sitting. Right now, right here, what I am doing is sitting, and I will get up when I am good and ready, and if you want to leave me here then go, fuck you, I don’t care.

I just need a minute. I just need an hour. A day. A few days. Just a week. A month. A couple of years, actually. Be right back.

Just need to get my bearings.

Just need this wall here. This is a good, solid wall. I love this wall. It’s not going anywhere, and I can lean on it. Holy shit: this wall is amazing. This wall is here for me. I love you, wall. Wall, I love you.

Whenever I would receive steroid infusions the only thing I could eat for days was Vietnamese food from Lês in Harvard Square. Pho chay, specifically.

I need limes from the grocery store. I need Vietnamese food and I need limes. I need, like, 40 limes. I need to get them before the steroid crash that’s coming in a few hours. Before it’s too late. I have to go, now, to the grocery store and buy like $40 worth of limes. Right now. Don’t bother me. I am on a mission. Don’t text me anymore because I need limes, OK? Goodbye. I need limes.

Steroids have a half-life of around 18-26 hours. If you’ve been infused with high doses for days in a row, your adrenal glands stop producing cortisol. Houston, this is a problem. I remember the crashes—the sweats, the muscle weakness, the inability to stand up (more so than usual), the bone pain.

This is why I need Vietnamese food and I need limes, and I need them now, before it’s too late.

I remember that I was left for dead for 2 years. Left for dead by everyone who was supposed to be there. Left for dead like an injured racehorse ready to be shot. I remember seriously weighing the hypothesis that perhaps I had already died and this was why I was being kept separate from the living. Why it seemed that no one could see me anymore. Why my ontological status seemed to have changed. I lay flat. Breathed. Waited. And sometimes, yes, I cried.

My Body Buddy

by Stacie at Keep Doing What You're Doing

I’m doing the best I can. I may not be doing EVERYTHING I can, but it’s still enough.

I’ve been experiencing some additional MS symptoms lately. It’s completely understandable given I’m experiencing more stress than usual. Still, when healthy habits lead to feeling better it’s easy to blame myself for not living a perfect, healthy life when symptoms emerge.

When I was diagnosed with MS, I felt like my body had betrayed me and I could no longer trust it. I thought I was super healthy, and suddenly my body went numb. Doctors told me I had an incurable disease that I’d had for years.

In my research of how others coped with MS, I often heard people approach it as warriors fighting a daily battle against their disease. I can appreciate the analogy and it makes sense, but it never resonated with me. Fighting myself feels exhausting. And what am I fighting? I have a super active immune system that thinks the insulation on my nerves (myelin) is an invader and needs to be destroyed. My immune system is fantastic at destroying other invaders. It’s just confused with myelin some of the time. Bummer.

It occurred to me to think of my body as my buddy who is great at some things and sucks at others but I love her just the same. My body didn’t betray me. She is doing the best she can. She held up magnificently for a long time, and she continues to do amazing things. My neurologist says with my MRI scans he would expect me to have some disability. At this point I have symptoms I notice but no one else does. I think it’s awesome that my body has compensated to get the nerve messages to parts of my body blocked by lesions.

It’s taken me time to shift my thinking from feeling betrayed to trusting myself again. Now I think being healthy and having an incurable disease are not completely opposite ends of the spectrum. They can both be true in one body.

My body has been doing the best it can all my life. Some of my habits help it, and some challenge it. Some activities and foods don’t support optimal physical health, but they nurture my mental health and feed my soul. Sometimes I’m coping and sometimes I’m nurturing. I think stressing out about not doing more can be more harmful to my health than the occasional indulgence.

So I may not be doing everything I can, but I’m balancing all aspects of my health in order to lead a fulfilling, active and hopefully long life!


This concludes the 154th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 1, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 29, 2014.

Comments for this post.

Tending to Your Emotional Health

Winter has been cold this year!!  Brrrrr……  “Stay warm” seems to have become the universal salutation around here.  Staying warm is not something which we normally have to worry about inside the house; however, a few weeks ago we had an emergency at home which took out our heating system with one big crash in the basement. 

We live in an old house with an ancient hot water radiator system.  It’s a low maintenance system that does a pretty good job keeping the house warm even with our drafty windows.  There’s not much we have to do besides bleed the radiators occasionally to release pockets of air that collect at the top of each radiator.  If enough air builds up, heated water cannot freely flow through the pipes and the radiator’s heating may be sub-optimum.

The big crash came from the overflow water tank, which was hanging from the ceiling in the basement above the boiler, tumbling down and taking out some of the pipes in the process.  Water proceeded to drain from the radiator system and flood the basement.  By the time the boiler/heater repairman arrived, temperatures in the house were slowly dropping on a late Friday evening.  It was about to get really cold inside the house.


Read this post in its entirety:

Living Well: Releasing the Emotional Air Bubbles

Pets Help Patients Deal with Chronic Disease

Sunday afternoon, St. Patrick’s Day, I’m trapped under a kitty and can’t get up.  Send help.  ;)  No, wait, that’s not necessary.  In actuality, my cat Oscar and I are rather comfortable enjoying some simpatico time on the bed.

Of our three cats, Oscar is the closest to being a “lap cat.”  He likes to sleep on the back of the couch just behind my head during the day and at night, he likes to curl up in the crook of my arm and lean into my torso.  He is my feline snuggle-bear.

Last weekend, Rob and I traveled out of town for four days.  Reports from home were that my little girl kitty, Musette, cried out, meowing through the house, looking for me/us.  She is very attached to her “mommy” and I to her.

Oscar didn’t seem to miss us while we were gone, but he did keep me awake nearly all night our first evening back with his demanding need to be pet and hugged during the night.  He needed his mommy lovin’.

Read this post in its entirety:
My Pets Help Me Battle MS

Carnival of MS Bloggers #127

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Colors of MS

Use All Your Colors 

by Ashley of MS Run in US blog

Every day is a brand new day and an opportunity to make of it what we want.  Every day we’re faced with thousands of choices; what to wear, what to say, where to go, what to do, how to react, how much to spend, how much to save, when to indulge, when to restrict, how to love, etc.  Data suggests that adults make nearly 35,000 decisions every day.  The idea of it can be staggering and intimidating.

Recently a client shared with me a story about himself when he was young.  In less words then the story should be told, essentially as a youngster he waited years for his family to have enough money to purchase the 64 pack of crayons for art class.  Until then they were only able to afford the 8 pack of standard rainbow crayons.  A few years later after he had gotten his use out of the 64 pack of crayons he decided to pass them on to his younger sister.  Before giving them away he notice, upon inspection, that he had only used the standard 8 colors regularly.  He so highly valued the other crayons that he was “saving” them.  He realized though that he saved them so much he didn’t even use them!

From that day forward he developed a motto: “Use all your colors!”.  This is a motto he applies to all areas of his life, of which his colors are his abilities. Whether it be for work or pleasure he commits to using all of his colors/abilities.

Obviously this concept has to be applied within reason.  We can’t just use all the money we have in one day or we’d find ourselves in a bit of trouble by the time the bills came.  But what if we applied this to abilities that we do have in plenty: love, compassion, endurance, forgiveness, kindness, patience, humor, drive, integrity…  These are all things that are given to us in immeasurable amounts.  There is no end to the amount of forgiveness we posses.  There is not limit to our kindness.  We impose our own limits on these attributes.

What if for today and beyond we don’t limit our abilities to do these things? What if we forgive until we can’t forgive anymore, and then we forgive more?

Remember as you go throughout your day that you have a box full of colorful qualities that you can use to brighten your world.  Use your colors.  And when you’re tired of coloring your world, color some more.

“Happiness is like jam.  You can’t spread it without getting some on yourself.” -Unknown

Escaping the "Red Zone" of MS

by Caroline of The Girl With MS

Sometimes this is not very easy to do, keeping your clothes on, with MS.  Summer months are brutal and just hiding out by the AC doesn't cut it for most folks. Planning ahead with cooling devices is best but sometimes we simply wake up in the "red zone", inflamed and sensitive, a red flag for a relapse.

When I'm in the Red Zone the first thing done is to rate the shade of red. Am I getting a little pink or have I fried myself?

And then ask myself why?

• What did I do yesterday?
• What did I eat?
• What was the temperature?
• How did I sleep?
• What's on my agenda today?

What can I do now to move into the "Blue Zone"?

Hanging by water is a great option. Pools, rivers, lakes, oceans provide instant relief from warmer temperatures. But not all of us have this opportunity nor can we often remove our clothes to cool off so improvise we must.

Quick tips:

• Cool shower. Even Luke warm is fine. Just hop in the shower for instant cool down.
• Wet bandanna around cooling points: neck, wrists, ankles
• Ice water, drink it, pour it on your head, pour it down your shirt!
• Wet shirt, cool off body. Huge help in the Sahara when my guides
  put my shirt in the crocodile infested waters so I could cool off. They
  don't have ice on safari in Tanzania, FYI.
• Juice it! With Cooling, anti inflammatory and detoxing foods such as cucumber, apple, pineapple, etc.
• Visualize the Blue Zone:

Ahhhhh....feeling cooler already. Now, not to mess it up.

That means to watch diet and activities all day:

• Cooling foods
• Activities by AC
• Water, hydration
• Reduce stress and get those items checked off to-do list
• Have fun brainstorming on some new projects
• Find balance
• Be at peace
• Mellow in the "Green Zone"

So, How do you deal when you're in the Red Zone?

This concludes the 127th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 22, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 20, 2012.

Comments for this post.

Carnival of MS Bloggers #113

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Diagnosis Game, Power of "Om," and Coping with Challenges

Note: My apologies for delayed publishing of the Carnival. Life has been crazy with plumbing issues, solo festivals, and a personal battle with depression and anxiety.

Limbolanders: Deal or No Deal?

by Laura of Inside MyStory

Howie Mandel has invited you to a special edition of “Deal or No Deal,” where the lovely but scantily clad physicians assistants and nurses present you with the opportunity to walk away the big winner. But first you have to pick the right briefcase containing your prize. Slowly you will pick off the cases one-by-one….

Beginning with the first pick, the crowd applauds when the case is opened to reveal Lyme disease. It’s off the board now – the blood tests confirm you’ve not been bitten by a tick. Whew, that was easy.

The next case you pick wipes a big disease off the board – SLE , no, not the latest Cadillac model, but Systemic Lupus Erythematosus. The audience moans a bit but you tell them that’s ok because there is still lots of big stuff left on the board.

Next pick and the crowd goes wild when you knock STROKE off the board. Such a simple common medical problem, anyone can settle for stroke, and you are sure you are destined for something more.

You press on with the game, being tempted with offers to settle from The Doctor, who is substituting for The Banker, in this special Deal or No Deal episode. Your support team urges you to say no deal and keep pressing on.

The stakes are growing because you are down to just a few cases left … which one holds the ultimate prize? Which one sends you home with the most to show for your efforts?

Oh no! The next case you picked contains Central nervous system (CNS) Angitis, and your neurological deficits can no longer be blamed on CNS Angitis.

To sweeten the deal, The Doctor offers you the opportunity to walk away in exchange for Psychological Counseling for life, and not just group therapy- this is individual one-on-one time with the shrink. You think long and hard, because it is tempting. You know you have depression and you know Howie has also done extensive psychotherapy for his OCD and look at what a success he is…. But you are no Howie Mandel and decide that this really isn’t in your head. After a lengthy commercial break while you ponder the choice, in the end you turn down the offer and keep playing.

The moment of truth has come – two cases left. You know you still have Multiple Sclerosis on the board. The second case contains the most dreaded prize of all – come back in six months. Which one does your case hold? The crowd is hushed and you are so excited with anticipation you can barely keep your legs under you.

Background music begins to play while Howie faces the camera and announces the time is up and you’ll have to return for the next episode to find out how you finish Deal or No Deal.

The Diagnosis Slow Lane 

by Olivia of Chronic

I am in the slow lane of the diagnosis process...
In some ways that seems good, surely that means things aren't too bad right?
I am thankful my cervical MRI showed no lesions!
I had a mental party after this news!
Next, my new neurologist has me set up for another
nerve conduction study and a lumbar puncture. (YIKES)
I am also seeing a urologist because I have had back to
back Urinary Tract Infections and a bladder that seriously has a mind of its own.
Next week the urologist will do some type of catheter test to show more of what is going on with my bladder. He seems to think it is a mis firing of my brain telling the bladder to empty and then it will not empty completely.
We will see.
I am sharing these details because when my symptoms first started I cruised the internet trying to find anyone who had a diagnosis story, I know we are all different but maybe my story will make this road a little easier for someone else.
In the meantime I just have to keep on keepin on.
That means, kids school drop off and pick up, laundry, cleaning house, dishes, dinner, and most importantly loving on my loved ones.
I am still dealing with overwhelming waves of fatigue, spasticity, mental delay, bladder frequency/urgency, numbness, tingling, burning nerve pain etc.
However, the show must go on...at a much slower pace mind you.
My house is not perfectly clean but it is decent and my family and friends are loved.
I continue to do yoga twice a day and meditate at least twice a day.
My whole family loves the meditation music....so there are some good things from all of this.

My prayer for today:
Focus on sending out loving energy,
even when my body is screaming it is too tired or it hurts too much.
Continue to learn how to love my new body.

Hugs and blessings to all!
xo
Olivia

Please Don’t Make Me Om

by msguidedjourney

The Yoga Paintings of Jan Hyde

I had always disliked yoga. I actually really loathed yoga. I just didn’t have the yoga personality. I had things to do, people to see, places to go and you mean to tell me I need to cover myself in a blanket and do Shavasana?  If you have never practiced yoga, Google it. It’s the corpse pose. I guess I didn’t have an appreciation for lying still in a corpse-like posture while listening to meditation music and seagulls.  And the mere thought of oming in a room full of people made me want to snicker because it just seemed so silly.

I first tried yoga in a class that was held above the garage of a woman my sister knew. It was a nice studio and Mary seemed like a nice person, but each week when my mom, sister and I went, I felt more and more stressed. I found that I just couldn’t stand the slow pace; the quieting of the mind. I did the 6 week session and declared that yoga just wasn’t my sport. I tried it one more time at the local Y and the instructor showed up wearing jeans to teach the class and she would actually fall asleep, complete with loud snoring, during Shavasana. The only time she seemed like a yoga “teacher” was the time that I sat silently while everyone else omed their three oms; one to the room, one to the earth and one to the universe. She would look at me and sternly say, “let’s try that one more time.”  Please don’t make me om!

That was about 8 years ago and I had the idea in my head that yoga actually made me angry.  When my MS specialist told me that yoga was a very good exercise for people with MS, I still avoided it for several months. On one of my last rides home from Pilates, I happened to drive by a studio that just caught my eye.  It was an old mill building with a brook running beneath it.  I went online, found the website and saw that the schedule was very flexible. There was no commitment to take a set amount of classes. My friend S had been trying to get me to revisit yoga and when I told her about this studio she tried a free class. She loved the place and assured me that there was no oming involved.  I decided to give it a go.  It was a large, but not too large, stylishly Zen studio, comfortably warm and dimly lit.  I immediately felt comfortable there.  The first class I tried was a Vinyasa Sundown Flow and it was very physical.  I felt challenged in that it required a lot of upper body strength and the instructor moved rather quickly from one pose to the next, thus the flow aspect.   It was nothing like any yoga class I had ever done and while maybe that class was too physical for a beginner, I bought a five class pass and started trying different classes twice a week.

One of my favorite classes is the beginner class on Monday mornings and I find it to be a fantastic way to begin the week.  On sunny days, the large windows that wrap around three sides of the studio, provide yoga mat sized sunny patches that make me feel like a cat in the sunshine.  The instructor is so warm and engaging, I would probably om while standing on my head if that is what she asked of me.  While that was probably an exaggeration,  I have been known to now om on occasion and it no longer feels wrong to me.  Shavasana has become my favorite part of class.  Last night I went to a gentle yoga with mediation class and the instructor went around the class during this quiet time, massaging each students head and using aromatherapy oil to give a blessing on our foreheads.  It felt amazing to have my MS rattled head pampered in such a way.  I have also participated in a work shop that was 3 hours of restorative poses, which essentially was an afternoon of creative Shavasana and was simply amazing.

I have caught yoga fever and I’m not looking for a cure.  Whether or not you have a specific health issue, yoga seems to be an all around whole body fitness routine that not only engages your physicality, but also your mind.  As anyone with MS has experienced, closing your eyes while standing straight with arms at your side results in an automatic swaying of the body, but yoga has improved this for me personally as it is excellent for challenging your balance.  I highly recommend it and suggest that you don’t give up before trying it at several studios to find your comfort zone. May the pure light of your spirit shine and guide you through each day… Namaste.

To spend three coins 

by Dan Digman

All I remember is standing on the basketball court one evening at the elementary school I attended across the street from my home. I was taking a break from shooting baskets, and I caught myself staring at our family’s one-story light green house.

It was the last place I wanted to go.

I don’t recall exactly how old I was, but I was old enough to know the realities of a life lost after earlier in the day I had seen my dad cry for the first time. My mom wept with him and, seeing them both so sad, my brother, sister and I cried too.

Dad had received the call that his brother Jerry – my Uncle Doc – passed away at his home in Dyersville, the town where my dad and his 13 siblings had grown up.

It was going to be a sad night, a sad day tomorrow, and another sad day at the funeral when I knew I was going to see all of my beloved aunts and uncles cry as well. I had never see any of them cry before either.

All I wanted was a free pass.

I just wanted to make this all go away and get our lives back to the place where everything was familiar, comfortable and manageable again. I longed for something to fast-forward me past the sadness of my Uncle Doc’s death to the time where all this dust was settled and life was back to normal.

I realized one day it would be better – time heals all wounds – but I was afraid, and I just didn’t know how I was going to be strong enough to get through this.

And so, in my creative elementary school-aged mind, I developed a revolutionary thought:

What if when we were born, God gave us three coins – free passes, if you will – that we could use at any time in our lives. Three opportunities to fast-forward through a difficult time and pick life back up once everything returned to “normal.” We’d have the memories of the experiences we skipped over, but we’d be able to bypass and avoid the pain, fear, sadness and anxiousness that accompanies such overwhelming situations.

Three coins. But when they’re gone, they’re gone. This meant that you really would have to think long and hard, using them only when you were facing what you felt were truly going to be the most overwhelming circumstances you’d ever face.

With this revolutionary thought, I picked up my basketball and went home to face the realities I was avoiding. I realized that even if I did have three coins, I wouldn’t need to use one at this time in my life. I would be strong. This too would pass.

Through a series of sad days, seeing my uncle laid to rest and seeing my dad and his siblings cry together, each new day thereafter was less painful than its yesterday. Soon the dust settled and life was back to normal. I made it through, even without one of my three coins.

I realize such an outlook was developed by my elementary school self, but I’ve carried the three coins thought with me every day since.

I look back on all the times in my life where I wished these three coins were real. Times when I was afraid, and I just didn’t know how I was going to be strong enough to get through them, such as coping with the deaths of my grandmothers, getting diagnosed with Multiple Sclerosis and living through a previously failed marriage.

Through each of these moments, I had convinced myself that if I had a free pass I would have cashed it in and fast-forwarded through the difficult time. If this indeed were the case, I would have found myself today at 39 years old and without any of my three coins.

The reality is, it would have been wasteful to have cashed in my coins on any of these moments. I stand here today living a life where everything is familiar, comfortable and manageable, even after living through the pain, fear, sadness and anxiousness of events like the death of loved ones, an MS diagnosis and a divorce. And I didn’t need any coins to do it.

At the end of each day, I find comfort in knowing that with or without the three coins, I will receive the strength through my God, family and friends to make it through the challenges and difficulties in life.

Perhaps these are the three coins I was given when I was born – God, family and friends – and these collectively will be available to me in unlimited supplies to help me move forward through the most overwhelming circumstances I’ll ever face.

I often find ways here to incorporate a Springsteen lyric that inspires me in times of need, but here with my three coins, I turn to a scripture reading – Matthew 7:7 – that my Grandma Otten had hanging on a plaque in her kitchen that showed a picture of Jesus knocking on a door:

“Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you.”

Whatever your faith or beliefs, I wish you the best in discovering the three coins that will help you along your journeys through life.


This concludes the 113th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 10, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 8, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #111

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Coping, Cognitive Issues, and Social Security

NEUTRALIZED
by Maris Mohr

I think I woke up this morning,

or did I sleep at all? . . .

The mirror reflects empty space –

nothing to reveal my wondering gaze.

Even in a room full of occupied seats

I feel unconnected to everything

Drifting ~~~~ between what I think

I want, need

Ending misunderstood, rejected

Feeling dejected, facing a raging wall of

why it can't be

Giving in, my oblivion strengthless

Arguing on no longer in my core

Knowing there's no point in disrupting

MY equilibrium, OUR harmony

Neutral being the safest gear for my survival. . .

© Maris B. Mohr
22.3.2012

The MonSter is Real!

by CJ of my MonSter stories

Unlike a bad dream, it doesn't come only when I'm sleeping, it doesn't go away when daylight comes, and even when my mind is occupied with hundreds of other thoughts and I'm busy with the "stuff" of living, working, and trying to care for my family, it lurks about and, without warning, it attacks, disrupting my cognitive and physical functioning, oftentimes bringing everything to a sudden screeching halt.

The problems are real, the pain is real, the symptoms are real...even if you can't see them.  Unlike a common cold or minor injury, it doesn't happen and then get all better and go away.  The nerve pain that accompanies an attack is excruciating and unlike any other type of pain.  If you've ever had a bad toothache, just try to imagine that type of pain occurring in any other part of your body.  It can affect any body part or function at any time for any length of time.  The numbness, tingling, and weakness that often occur can mimic signs of a stroke and can be very frightening and debilitating.

I'm thankful that, at least for now, I have the relapsing-remitting type, where the MonSter attacks and one or more areas of cognitive and/or pyhsical functioning is affected for a period of time, then gradually resolves, although often not completely, so that I'm left with some residual pain or loss of function.  Some of the symptoms I've had include vision problems and eye pain, vertigo and imbalance, difficulty walking, confusion, disorientation, difficulty processing information, slowed thinking, difficulty with speech,  memory loss, numbness/tingling/weakness, burning sensations, spasms, reduced fine motor skills such as writing, unexplainable indescribable fatigue that can strike and suddenly render me immobile, pain - including what I describe as extreme "lightning bolt" type pain that takes my breath away and can make me collapse onto the floor.

Please understand, although altering lifestyle and making some changes can help, these cannot cure MS.  Rest is not a cure.  Less stress is not a cure.  More vitamins or supplements is not a cure.  Better weather is not a cure.  Currently there is no cure.  There are several treatments being used that seem to slow down the progression of the disease and/or reduce the severity of the attacks.  In my opinion, most of the treatments that are being used are experimental at best.

It is my hope that by writing about my own personal experiences, readers will have a better understanding of MS, and some might also better understand me as a person and perhaps have just a little more tolerance and compassion.  I would not wish this MonSter on anyone, but MS is no respecter of persons; it could choose you or one of your loved ones next.

What? How?

by CJ of my MonSter stories

Most folks in the "civilized" world are familiar with the objects in the above photograph. And most people would not find the objects the least bit intimidating or frightening. I've never had a problem with them...until yesterday. You see, yesterday I was feeling a little "off" from the time I awoke and got out of bed. I was a little unsteady on my feet, and I noticed I was having some difficulty keeping my thoughts together and I was having trouble making even the smallest decisions.

After taking much longer than usual to make my bed, put a load of laundry in the washer, eat breakfast, and wash dishes, I knew I needed to get a shower and get dressed. But I was a little leery of trying to stand long enough to finish my shower, so I decided it might be best if I just took a bath instead.

Well, everything was going along okay and it actually felt good to soak for a few minutes after bathing. The problem arose when I decided it was time for me to get out of the tub. I sat and stared in front of me at those shiny silvery objects that are shown in the photograph....it seemed like it was for an hour, although it was perhaps only four or five minutes. As I sat and stared, I became a little frightened as well as frustrated...because I could not remember what I needed to do in order to drain the water from the tub.

No, I haven't suffered a traumatic brain injury...no, I don't have Alzheimer's disease (as far as I know)...no, I didn't have a stroke, etc. I was having an acute attack of my brain "short-circuiting", something that happens to me fairly frequently as a result of having MS (multiple sclerosis). These particular episodes usually don't last very long, but I do have some permanent long-term as well as some short-term memory loss. The attacks can occur at any time, but tend to be more frequent if I am fatigued, emotionally, or mentally stressed, too hot, too cold, or have any type of illness going on. This is just one of the many symptoms I have with this cursed disease.

Why am I telling you this? Because I want to help you understand what is happening to me...why I am constantly keeping lists or a journal, why I sometimes seem to be staring blankly into space, why it sometimes takes me longer than you think it should to answer a question or complete a simple task, why I say "no" or "not now", or "I can't" a lot more often than I used to. On the outside I may look "fine", but on the inside I am often a "tangled mess of misfirings and disconnected electrical impulses".

So, if you can accept me as I am with all the changes that are now happening and doubtless will continue to take place (unless there is a miraculous cure), I welcome you into my life. If not...if it frightens you or it's too much for you to bother with or handle...then you will probably become suddenly silent, quickly disappear, walk out, or just slowly back away as many others have already done. Either way, I thank you for listening to me.

On Tuesday I Met The Bogeyman

by Laura of Shine the Divine

On Tuesday I met the bogeyman

she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
day
I wonder
what’s her story?

Anger, frustration, sadness, grief, expressed through sarcasm, I admit this is where I am sometimes, sometimes lately. Sometimes it gets a little crowded, a little ugly and uncomfortable in my mind. I’m aware that this tumult is happening, arising from fear, from disappointment. I recognize these emotions for what they are and see what is inside, what is outside, what is changing, oh everything is always changing and that is a comfort. But still, I get lost in myself sometimes. I momentarily forget that it isn’t all about me, well of course not. Life is about US, and so much more. I know this, I do, and still some days, some days lately, I lose my way; tense, snarky, suffocating thoughts spin round and round and choke me, filling my throat with words I should NOT say, come out garbled anyway, until I finally remember; just exhale and listen. I hear my own agitation ricochet, a pinball ringing bells, lighting lights, through a maze of words, words, words, so much noise in this dark cave my mind can become, points I score are pointless, they only create more tension so that I must release the spring-loaded thoughts; just exhale. I inhale fully and then exhale again, a deep sigh of forgiveness. Compassion, love gratitude, rush in with a tide of tears. I’m only human. And only human is enough. It is all I know how to be. It is all that I am, that we are. And yes this is about US, a story told from my perspective on a particular day, but as I said, it isn’t all about me, not really; this is a story about life, it is about all of us, and so much more.
Inhale…

First timer at the Social Security office; my mind chasing its own tail, looking at all the other people in the waiting area, anger flashed “What am I doing HERE?” My husband went up and took a ticket. We sat listening to the numbers being called, a grayed—where is the hand sanitizer, I know it is in my purse somewhere—kind of space. The ticket made me think “bingo hall,” not that I’ve ever been in one, but I’d never been in a Social Security office either. Three rows of chairs lined up, linked together, no tables —was our number "A34" lucky??? And a large silent TV with S.S. info-mercials, alternating English/Spanish subtitles, a continuous "easy-listening" garageband music loop that I was certain was playing subliminal messages ("get out while you still can") or would put me in a coma from utter repetitive boredom ('irritating-listening" for me). All the while denial, that sleeping dragon stirred —“I don't belong here with these three pony tailed, war vets, these two mothers with runny nosed toddlers wrapped around their plump legginged legs —round eyed cuties playing peek-a-boo with the strange looking lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller), the old man who looks so tired and doesn't seem to understand what the annoyed woman in the cut-out window keeps repeating to him (repetition a common theme in the room), the twenty-something kid who couldn’t possibly have showered today or washed his jeans in at least a month if ever. It wasn't that crowded —and then one little girl forgot to be shy and started talking to her Mamma about her cell phone (her mother's, but she was pretending to be grown-up), and I heard my toddler voice. My MS impaired toddler voice thrown ventriloquist style escaping through her tiny rosebud lips. Maybe she was two and a half, three tops; she was easier to understand than me, the lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller) —and tears leaked out of my eyes, slid down my face, rained on my jeans, softening them so seeds of compassion could embed themselves in my soul-soil; tender blossoms of love at the ready, just below the surface.

I am every single one of these individuals. They are me; we are ONE. We are all living life, decaying hollowed hallowed tree trunk people, silvered, surviving through challenges we didn't expect. We are humans who need help. I am a human who needs help. I worked for as long as I could, except when my kids were really small. I can't any more. Not outside our home. I do what I can when my voice allows over the phone, I'm a good listener. I create meditation podcasts that I offer for free, because it is a struggle for all of us living with chronic illness first to be able to get to a class, second to be able to afford it, and if someone has a little extra to donate, that's great, I appreciate it but don't really expect it.

I paid into the system, pray into heaven right here, the Holy Essence residing in my heart. With our first child about to go to college in the fall, and the high cost of medical care, our family, needs income from me too. We are a multi-illness health insurance company’s worst nightmare family, and arch enemies apparently considering all the headachy “NO we still don’t have any other health insurance than yours. NO our 15 year old daughter doesn’t have her own top secret health insurance coverage beyond what we her parents provide through your company. What do you mean you will cover the injectable medication but not the syringe and we need a separate prescription for the syringe that you won’t pay for? How exactly am I supposed to give this medication to my wife that she was supposed to have last weekend but you didn’t send it until now-sans freakin’ syringe???” phone calls. These are just a few highlights from this past week’s health insurance shenanigans. I'm sure this is familiar to many of you too.

I hope that my Social Security Disability Insurance application won't be rejected. And I understand that it might be. That happens to a lot of SSDI applicants. People I know, and they have to drop their dignity again, go down to the dingy office in their city or town again, and sometimes a third time again; months and months and months of waiting to be judged "sick enough" and deserving of the money that they paid into this failing system. It has been three years since my official diagnosis; four years since I was last able to actually go to work. So for all of my family members and friends who have been telling me to go do this thing (“its so easy, they’ll help you, I’ll drive you, you are entitled”) I did it. I pulled together the courage, swallowed my pride and with my husband pushing my chariot rolled through the damn door. Ironically one of the blue electric handicap accessibility door buttons didn't work, so one of the vets opened the last door into the building for us. Was it a sign?? No, this happens all the time.

You see, I wanted to believe that I would get better, be able to drive, work again at a real job. For the past three years I really, really wanted to believe that, but remission for me is like the tree bark in the photo. Mostly I'm still standing, I even look good some days, but there are missing pieces in the myelin that is supposed to protect my nerves and carry messages from brain to muscles and vital organs, and I'm not going to be how I was. I think I lived through THOSE remission years already, and now there is too much damage to repair after new lesions form or old ones get bigger. So, Ok, I get it. It isn't going to happen. That part of my life is over. Done. Gone. This is how it is today. Tomorrow will be different. And so it goes.

On Tuesday I met the bogeyman
she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
day
I wonder
what’s her story?

I left heart broken with grief swirled into twisted relief. Not bitter, not sweet, metallic; perhaps that’s the taste of it? I don’t know how long we’ll wait, if I’m sick enough to qualify for benefits. What strange words to write in the same sentence, “sick enough" - "qualify" - "benefits.” But the first part of the deed is done.

We went out for Indian food at my favorite buffet to "celebrate" this big step toward fuller acceptance of our shared life. We were hungry and it is on the way home. The waitress gave me her chai recipe (I didn’t know until I complimented her on how much I love it, drinking my second cup, that she is the one who makes it); hers is the best in town. If only I could walk downstairs, I'd make myself another cup. I think we have the ingredients. Chai in Hebrew means Life.

I am ever so grateful for the beautiful souls surrounding me in that waiting room, softening my own soul-soil, planting seeds of love, grateful for the bogeyWOman who helped me release my fear through her kind demeanor (because that is what pride often is, fear hiding behind pretentiousness.) Here's to Chai, just as it is, Holy and torn through with gaping holes, difficult and suffused with kindness, imperfect and whole. This is our story.



This concludes the 111st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 12, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 10, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #96

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Hurricane which is MS

You being you is amazing

by Mary K. Mennenga

When what you can do is stolen from you

The mix of emotions felt are different for each person

That learns their life and all plans made

May need to be changed or at least need a lot of adjusting

The future has become a question mark

What hasn't changed is your heart, spirit and love for life

Your not one to give up or quit when things get tough

Learning it's name M.S. gave you a power over it

Because you knew what it could and would do

M.S. didn't know the kind of fighter you are

You knew the fight was against M.S.

Not you!

What it took wasn't who you are only what you could do

You are much more than just that

Knowledge is a powerful tool when the fighting must be done from the inside out

Having limits isn't something you've had to deal with until now

Handling this isn't easy when it changes

One day you can the next your body fails it's not your fault

You know what the real reason is and it's not you

Getting people to understand does not always happen

Now all plan's made are tentative to limit misunderstandings

This is when we see how strong you are as you battle M.S.

Yet you still manage to take care of the people who love you

Of course you may not see it that way, your looking outward

We are looking in seeing your heart

That is the most amazing part of you being you

Like A Hurricane

by Gracie's Mum

August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.

The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.

The most famous of them all to hit Halifax was 2003’s Juan.

With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.

The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.

There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.

And although there weren’t many that hit land, last year was still no exception.

In August of last year we were walloped by a doozy that left us without power for 2 days.

Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.

Good times.

By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.

As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.

It wasn’t the worst of storms but it was a big one that’s for sure.

Hurricanes, although everyone is aware of the season, are for the most part unpredictable.

Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.

And we know that they’re given names and because of that we’re able to remember how bad some of them have been.

But none the less, the actual damage is unpredictable.

Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.

And nobody knows why this time they were hit or why they were spared.

Living with MS is much like hurricane season.

All year long.

Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.

Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.

And nobody has the cure.

And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.

Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.

Many will face a wrath of nature that no amount of planning could have ever prepared them for.

So what do people who live in the path of hurricanes do?

They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.

But very few move away out of fear.

They adapt or die.

So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.

And when and if it comes I have but one thing to say.

You better bring it ‘cause you’ve met your match this time.

On The Road Again

by Gracie's Mum

It’s been a long road.

Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.

And then, then it got a little swear-y.

I’ve been on this road for almost 5 years and a new road is just around the corner.

In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.

I have not returned to work since my departure in March 2010.

That is a lifetime ago.

And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.

Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.

On top of that, I have a house designed to conserve my energy.

I won’t say I feel back to my old self, because I don’t even remember what that felt like.

It’s been a long time.

I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.

A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.

I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.

To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.

To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.

To have future career goals.

Because I have confidence that my energy levels will not fail me as miserably as they have before.

For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.

I know that I will have MS for the rest of my life.

I know what MS can do without medication to divert its course.

I know now how one of those medications made me feel.

And I have learned from that experience.

I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.

I need this and my family really needs me back to being me.

And that I can see her, smiling back at me in the mirror, is almost too good to be true.

But to know, to believe that it is true, is even better.

Have a wonderful weekend!

I'm Special!

by Nicole of My New Normals

I see a neurologist to manage my multiple sclerosis. Even though I’ve had this ghastly disease for 11 years now, going to the doctor’s office always leaves me feeing down and depressed. I’m not entirely sure what I expected the doctor to say at this visit, but it was the same old stuff.

Sitting in the waiting room I kept thinking that MS wasn’t in my plans. Those thoughts would usually make me a blubbering idiot. But this time, I remembered some of my own words. I remembered the wonderful comments and support I’ve received both here and from family and friends.

I said before, I am never quite sure what the doctor will say. But that’s a lie. The feeling that I was misdiagnosed is always running in my heart and I thought he’d know. I secretly thought he’d feel that same vibe and would shower a little hope on me. After all, I thought only 2/3rds of the multiple sclerosis population ends up in a wheelchair? What happened to that? I told these statistics to my husband Tommy and he said, “You’re special and make the wheelchair look good.” It’s kind of lame, but I’m a sucker for compliments of any kind.

I thought people, who start out with visual disturbances, like I did, generally do well or at least don’t end up in a wheelchair? What happened to that? Again, all Tommy said was, “You’re special.”

I thought black Americans didn’t generally get this? Well, the gigs up. I’m black and I got it and yes you don’t have to say it I already know I’m special.

Mighty Mouse

 I read an article where Multiple Sclerosis Was Successfully Reversed In Mice. Too bad I’m not a mouse.

AAAGGHHHHHHHH!

Somehow, I feel better but I still need a drink!

"Life Interrupted, It's Not All About Me"

by Chris Tatevosian

Book Excerpt:

When I was struggling, my mood was one of nastiness.  All my actions had become hidden agendas.  My anger and nastiness developed into a learned technique for achieving my hidden agenda.  At one point during my marriage I recall my wife saying that she tried to do everything to please me in an attempt to avoid upsetting me.  Of course, she told me this so that I would be sympathetic and understanding.  As a result, I thought I was being more understanding, but I had also learned that expressing anger was a way of getting what I wanted from her.  I was guilty of angrily expressing frustration and hardship likely resulting from the embarrassment of my physical losses such as strength, energy, and simple motor skills.  Furthering this problem were the larger culprits: my mental and emotional losses, the loss of my self-esteem, and the development of cognitive difficulties.  This behavior became the norm.  In my mind I didn’t recognize my relationship-damaging and selfish behavior because my personal struggle to function was all-consuming of both my mental and physical strength.  I mean, come on, every simple daily task like tying my sneaker, standing up in the shower or holding an eating utensil became an embarrassing struggle.

Whether we want to admit it or not, the damage to our own egos can cause much anger.  Unfortunately, much of it is misplaced anger, and who is the unfortunate recipient of that anger?  I’ll take “my wife” for $500, Alex.  If someone, somehow, had been able to help me recognize I was acting that way so that I could have changed my behavior and stepped out of that “it’s all about me” fog, my marriage might still be intact today.  Having a chronic illness or disability is horrible, tragic, and unfair.  If you surround yourself in that fog of misery and self-pity, you may just be involved in a tragic accident, the result of which will be the tragic loss of your relationship, marriage or family.


This concludes the 96th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 15, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 13, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #77

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

What Can You Do? What Should You Know? How To Get Back Up Again!

Top Five Simple Actions 
You Can Do For Your MS

by Diane Standiford of A Stellarlife

1. Eat healthy
2. Exercise any part of your body that you can
3. Reach out to people, family, friends, strangers
4. Discover YOU. What makes you laugh? What are your fears? What is fun?
5. Laugh, educate your fears into remission, have fun!

After the Multiple Sclerosis Diagnosis, 

Things You Can Do and Should Know 

by Diane Standiford of A Stellarlife

Take a deep breath.

The majority of people diagnosed with MS will live a long life and never need a wheelchair.

You have a disease that has warped ahead in the last 20 years to a place where there are many avenues you can take to manage it. It will be managed; you CAN do it.

Every week, new research is leading us closer to answers about MS.

You are not alone. There are support groups and many blogs written by people with MS. Join the community!

Time is on your side. MS will not kill you. "Death by Ms" is rare and if you are that bad off, then you are not reading this. (If you don't believe me, ask your doctor.)

Keeping your body in good shape is essential to living well with MS. Exercise, eat healthy, rest, follow your passion.

Don't make hasty decisions, especially when you are having a relapse. Most MS starts as relapsing/remitting, "This too shall pass."

Talk with your friends and family. They will want to help you.

Educate yourself about MS! With the Internet you have a WORLD of information, use these tools and sharpen your emotional tools.

DON'T quit your job until you have tried everything to keep it, the Americans with Disabilities Act (ADA) mandates that an employer give you reasonable accommodations. Sometimes the simplest of changes can mean being able to keep your job.

Form a good relationship with your primary care doctor. MS will NOT be responsible for every physical problem you have.

Breathe. Focus on the good things in life and go after them now. Surround yourself with things that make you happy. Help others whenever you can. Give. The return is always great.

Your new adventure awaits you! Embrace MS, it is a part of you now. There is always a chance a cure is in your future!

Start a diary, let your feelings out. It is okay to cry, to be afraid, but don't let MS define you and don't let fear be the boss of you.

Hey! Think about staring your own MS blog. It is easy to do. We will warmly welcome you!

The bathroom floor imprinted on my face 

by Jennifer Digmann

Yes, on my face.

Couldn’t have happened at a worse time. Or so I thought. Right there on a break from my class, Dan was helping me to pivot in the Anspach Hall bathroom and SMACK!


Profanity! Profanity! Profanity! And Tears … tears … tears. And that wasn’t just me. I heard profanity and tears coming from Dan too.

It was frightening, fast and so sudden. I couldn’t even lift my head off the tile. I didn’t want to even move and I was face down on a public bathroom floor. That’s how bad it hurt.

This was supposed to be a standard trip to the bathroom. Same as we had done for each Tuesday evening over the past nine weeks of the semester. I have a regularly scheduled break during my Anthropology 590 graduate class, “Gender, Culture & Society.” During this time Dan comes to the CMU campus building to help me go to the bathroom.

And it normally runs like clockwork. We get a break. We go to the bathroom. I ask if any of the women there minds if my husband comes in to help me – which they never do because women rule! –and he helps me with pivoting and transferring on and off the toilet and back into my chair.

But this night, the night before our largest speaking presentation ever, a rare miscommunication in the transfer back into my chair had me simultaneously thinking, “Timber!” and “This is going to hurt,” as I fell shoulder first into the bathroom stall and then flat on my face. Thus the imprint. For real. You can see the tile lines on my cheek!

I’m lucky that there was no blood, I didn’t break any teeth, and we were able to get help (thanks, Sarah, Dr. Brown and Josh!).

I was fine once I calmed down. Dan was too. I think I took a couple ibuprofen and sat on the couch after my professor let me go home from class early (Thanks again, Dr. Brown!).

And I geared up for the next day’s presentations with the Women’s Initiative at noon in Mt. Pleasant and the Shiawasee County MS Self-help Group later that evening in Owosso.


Speaking with Dan in front of 300 people at the Women's Initiative event (thanks for the photo, Peggy!)

Marked with the sign of the bathroom tile floor, Dan and I delivered two of our best speaking engagements the next day. We were fortunate enough to share our story and increase MS awareness, all while I was rockin’ my first-ever black eye : -)

And to be frankly honest, I sported that black eye with pride because it symbolized both the reality of my Multiple Sclerosis and my determination to not let this disease hold me down.

[Note: Jennifer's black eye has cleared up and she is busily writing her last paper of the semester.]


This concludes the 77th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 16, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 14, 2010.

Thank you.

Comments for this post.