Carnival of MS Bloggers #82

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

Love, Pride, Brains, Research, and Courage

4-Letter Words

by Kristie of X-Out MS

Today I had to do something that I never thought I would.  I sent my husband (at work) a 4-letter word message.  Just 4 letters. At a point where I didn't know what else to do - scared to no end - the world around me spinning faster than I could handle - and the only thing that popped into my head & that I was able to communicate was a dreadded 4 letter word. 

What was it?

Help.

That 4 letter word for some reason takes so much for me to ask for - and when I do, I feel almost shameful.  It's literally acknowledging that I can't do it on my own & I need someone else to assist me.

Super frustrating.

Then - my husband appeared at my car window - tapping to get my attention as I lay there with my eyes closed to the spinning world around me - and I was filled with the realization of another 4 letter word that I like so much better.

Love.

Run your own race

by Dan Digmann

I realize we aren’t all runners, but hear me out on this.

So the other night I was running on the indoor track at Central Michigan University’s Student Activity Center. It’s where I run in the winter. Not that I mind the cold outside, but it keeps my MS-numbed feet and me from running/slipping/falling on the ice and snow.

Nine laps make a mile. The middle lane of the three-lane track is intended for runners. And this time of year, the SAC track is packed with college coeds eager to sculpt their bodies into spring break shape.

This is my fifth winter running at the SAC, and I had an epiphany the other night when a runner blew past me at lightning-fast speed.

Here's a photo of me running at the SAC that was featured in a Morning Sun article last year.

In previous years I would have trashed talked him in my mind, calling him a showoff and wannabe and thinking how damn funny it’d be if he tripped and fell. Nothing hurt but his pride, but that’d be enough vindication for me.

But this year a kinder, gentler Dan had a more mature thought about this man who sprinted by me as though I was standing still. Rather than hate him, I truly saw myself in him. Because that was me … just two days earlier. I was the one blowing by everyone else.

Two days earlier I was speed training. Sprinting half a lap, jogging for one. Sprinting half a lap, jogging for one. I wasn’t showing off. Not entirely a wannabe. I was running my race. For me.

So many times with MS and life, it’s easy to compare myself to how and what other people are doing. Who would have thought a keeping-up-with-the-Joneses attitude could work its way into living with a chronic illness?

This is where I’m grateful I got into running because the lessons I’ve learned there have helped me to mentally move forward in my life with MS.

When I enter a race, the success of my race is not determined by how I finish overall or within my age group. Rather, how does it compare to my personal best time? My personal best time.

Oh sure, it’s great to place among other competitors. But even then, are we satisfied? One time several years ago I honestly placed first in my age group. Rather than fully celebrate first place, I downplayed it and made excuses (“But there were only two in my age group!”). I imagine I would have been more proud and perhaps even bragged about it had it’d been a personal best.

So I try my best to focus on what I’m doing in running and in life and compare it me. My dreams. My abilities. My circumstances. My goals. My personal best.

And how my personal best compares to everyone else is either excused by my disease – “Yeah, but I have MS” – or an added point of pride – “Yeah! AND I have MS.”

Know yourself, and run your race.

Taking My Brain Back from Multiple Sclerosis

by Diane J Standiford

In my new life at the assisted living/retirement community I had to move to (TWO YEARS AGO! WHERE DID THE TIME GO?), there rages within me the desire to build some new brain cells and paths up there. Many firsts and "never tried before"s have taken place. I hope my brain is growing a bit.

When we are babies, EVERY day is packed full of "never tried before"s, then with each passing year we try less and less, just a fact of being human. So, while I know I'll never catch up with that growth during my earliest years, I will do as much as I can.

Never ate peppers before. Never played Bridge. Never met so many people. Never wrote so much. Never read so much. Never typed so much. Never ate oatmeal, grits, Gouda cheese, asparagus, beef jerky, my stomach must be going crazy. Never spoke Swahili. Never learned so much about the Bible or Beverly Hills. (I thought Palm Springs was in Florida--all knowledge from Blogs I've followed.) Never used skin cream. Well, just never have done so many new things since I was a baby. And you know what? I think it is working. My brain says it is having a blast.

"You never___?!!" Yeah, I get that a lot. I'm 53 and doing it now.

Last week I played a great hand of Bridge. Got the cards and played them well. Nine diamonds, partner opened a spade, I countered a diamond, then back with 3NT. (Spade lead might have sunk me.) My dummy had 2 aces and west lead went low right to her! She also had two diamonds. Perfect. Yes, after over a year, I am beginning to be able to play Bridge.

Now, a game like this covers it all---being social with live people (not that any of you are dead, but we don't have to use as much of our brain with facebook friends or when reading a comment/blog, we basically rely on previous brain paths to decide if the words are sarcastic or serious or neither or both) forces the brain to interpret many body gestures and verbal cues. Shuffling the deck of cards (which I could not do at ALL 2 years ago, but now do it with a passing C), dealing them (again, took over a year) and holding 13 cards, all digging those brain paths.

Taking my brain back from multiple sclerosis is my new destiny. I didn't chose MS, but I can chose this. I am putting action behind the words, "Fight MS," because we really are at war here. When I read those who post "Fight MS" (in blogs and Face Book), they too often are charging straight into drugs or surgery, both which have yet to be without a doubt proven to help MS AT ALL! (That's right, I said it, again, some YouTube videos and people in an early stage, RRMS, or complete undocumented by the medical establishment/scientists stories of great turn-arounds, are not cutting it with me, *I* could have made those videos and told of such success myself after my diagnosis in 1990---and the only culprit was the natural and proven course of MS doing its thing, being healed by my own body in ways no, NO, medical researcher knows.)

"Pass." "One club." "One spade." "Pass." "Two no trump."
Taking back my brain one card at a time.

Now!

by Judy of Peace Be With You

Share the urgency.
That should be the call to arms
of all MSers.

What is evident:
time is not on our side.
Quite the opposite.

Running on ice floats.
Current research feels that way.
We need a cure now!

The following video was sent to me by one of the persons who worked on this mini-documentary.  It is presented by BYUtv.

Courage: Ryan Ren



Finally, I want to congratulate Marc Stecker, the Wheelchair Kamikaze, for being named the Best Patient Blog of 2010.  Way to go, my friend!!


This concludes the 82nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 3, 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, March 1, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #75

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

Courage to Speak Up, Speak Out, and Share

Trapped in a Toilet

by Ragged Warrior

I was trapped in a toilet today. It was scary.

While out and about at an appointment today, I decided to find a salon for a shampoo and cut. I have been so weak lately that I have been unable to wash my hair myself. Since an entire week had passed since I last washed it, I thought the salon idea was a good idea. Unable to find one of the ‘cheap chain salons’ I found an independent salon that had a sign flashing: ‘walk-ins welcome’. OK, so I thought I would just ‘walk-in’.

The only problem was that it was next to a gym with full length glass windows. Ugh!!

I decided to waddle past the gym with my head turned the opposite direction. I don’t know about you, but I don’t want to be faced with skinny people jumping up and down for no reason. Plus, I didn’t want them to think that I cared if they pointed their finger at me and started laughing. So. I held my head high——and looked the other way while passing the spandex people.

I made my way to the welcome desk and asked if they could fit me in. Little did I know that the halls and booths in this salon were only 1 inch wider than my walker. And nothing could have prepared me for what would soon happen.

The receptionist said “yes, Tracy can help you in a few minutes”.

“OK” I replied.

I entered the salon area and pushed my walker through the aisles knocking brushes, hair sprays, and applicators to the floor. Women of all sizes and shapes quickly took refuge in all the nooks and crannies they could find, while beauticians pressed their bodies flat against their workspace. I pretended I was OK, but the truth was, I was struggling for each step. They turned away from me; perhaps hoping that they would never be in such a condition. People dressed in suits walked out of their offices, only to see me and turn back around. I hate it when faced with my own mortality, how about you? Plus, you know when you are traveling down the highway and you come upon a ‘wide load’, well it was sorta like that. They kept moving ’round and round’.

Suddenly, I wondered if my bladder might be full. You see, when you have MS, things like bladders don’t work like they are supposed to due to nerve death.

Some ladies are unable to control their bladders and have to carry various items with them. My friend has this. There is a special protocol that these ladies follow. First they use their containment buoys, “bam bam” my friend says, placing the buoys around her leaks. If that doesn’t work she throws trash, straw, hair and golf balls at the leak. The last resort is a concrete hat—it’s so hard to mix up the concrete though. When I am with her I remember to bring rags.

Then there are people like me. We have to push on the darn thing to get it to empty. And that is where our story begins.

So, I nonchalantly enter the handicapped stall and secure my walker. I sit down and begin to think about how I will complete this task. I muster up enough courage and plan the attack. I began pushing with all my might when to my horror, the toilet seat changes its axis violently, with no thought of my personal needs.

I cry out to God.

“Oh Lord, please say it isn’t so please God”.

It’s a true disaster, like an earthquake with Niagara Falls and the Hungarian sludge thrown in for good measure. I begin the inevitable ‘Slip n Slide’ down to the floor, my foot pushing a roll of toilet paper to the other stall. I grab the toilet paper holder and inch my way back up the toilet.

“Oh God!! NO NO NO” I cried!! Please help me Lord…..Jesus what do I do”.

This is where retroactive prayer comes in.

I say to God: “lord…..could you please pretend that I prayed about this this morning”?

I muster my strength to assess the damage. “Lord Jesus please help me” I muttered to myself.

“Oh no Lord….please tell me it isn’t on my clothes…what will I do”. Peeling off layers of clothing reveals the truth, it’s everywhere, in the front and back and down a leg. I am downhearted and blue.  What will I do?
I panic looking for a back door that I could escape from—there is none.

Oh, maybe there are…..paper towels………..oh man—it’s the blower type. I can’t get my rear up that high plus it would look suspicious if I was caught.

I’m trapped–I must plan an escape.
I could stay here and ask that they call 911.
I could glide on the wet path to the front desk and tell them I had a phone call of a serious nature.

OR

I could walk with my head held high, and have the girl do my hair. So, I decide on the latter, I will just pretend that nothing is wrong. If I talk enough, smile enough or laugh enough maybe she won’t notice.

So, that’s what I did. Did they notice? I don’t know. Am I going back? Not in a million years!

Did this really happen? Oh yes!!!

From now on, my friend and I will tag team.

Finding your Voice…

from Carolyne's MS Odyssey

You know, it’s funny – most people would not describe me as a person in any way fearful of speaking her mind. In fact, quite the opposite – I am considered, as someone at work once put it, a “calm, funny, and politely pushy woman”. I took that to mean an assertive woman who gets things done!

As MS’ers, we each have to be our own advocates, and speak out about our health, speak about our needs, ask about options, and so on. We must find our voices when dealing with our situations – especially with the medical community. I am well known within my own circle as someone who speaks her mind, challenges doctors if I feel it is necessary, and is generally not afraid to openly discuss any aspect of health situations & improving health with people. OK – I am pretty much not afraid to discuss anything!

That being said, I had another “a-ha” moment the other day when my sister and I were  discussing the peace of chanting in yoga. I had never felt comfortable doing any chanting – but I enjoy listening to others chant. And I only whispered “namaste” very quietly, feeling too shy to speak it loudly enough to be heard. Namaste means “the spirit in me honours the spirit in you”. So when my sis challenged me to speak my inner voice – voice the word Namaste with feeling…well, I froze. The very thought made me tense up. And it made me wonder – why? Why was I afraid to speak loudly enough to be heard?

I pondered this in the woods the other day. SuperMike and I drove down to the south shore, quietly enjoying the brilliant fall colours and each other’s company. At his camp, while he closed things up, I wandered around a bit, and smelled the crisp air, shuffled my feet in the wet leaves, and simply breathed. At one point, I closed my eyes and whispered “namaste” to the trees around me, reveling in the feeling of nature and the sound of the wind through the trees. Did I figure out why I was nervous about speaking out loudly? No. But it struck me – I had not been down in that area of the province in over two years – since shortly before my accident. Wow – had I ever missed it!

Well – I have begun saying “namaste” more loudly – loudly enough so that the people beside me can actually hear me. And you know what? It is actually a freeing & personally charging sensation! Who-da thunk something so simple could feel so empowering? And it is already translating into other aspects of my life – I found myself saying “No – I need my rest” to people at work requesting more of my time than I could afford to give; I found myself speaking up in situations where I had been taking a back-seat roll. I am the kind of person that will put herself last in efforts to make sure those around her are comfortable and happy. Finding my voice, for me, meant finding the voice that says “I need to take care of me, too – and that’s ok.” For me, I had to embrace that “namaste” means also to honour my own spirit… and follow whatever form that may take in the moment.

That’s exactly what we have to do with MS every day, too, isn’t it?
Namaste.
Carolyne

Part Two Taboo

from Kaleidoscope Muff

Since the blog police didn’t arrest me for my last post, I’ll continue with the second part of this verboten subject. Now, while the bladder blues started for me a while before I began to seek answers about my walking, the bowel bouts didn’t begin under I was going through all the testing. At first – here we go with denial again – I assumed it was caused by the anxiety I was experiencing, but as I researched on my own, that item kept cropping up. If I couldn’t discuss my dampness problem, I sure as H%*# couldn’t talk about this one!

My first real ‘situation’ occurred once again in my classroom – I feel at times that I almost lived there! Since I was a child, I had experienced irregularity. No amount of fruits, veggies, or grains could change me, and I just learned to live with it. That sensation increased as the MS progressed, but it was soon accompanied by another doozey – urgency! As I said, I thought it was an upset brought on by worry, but it wouldn’t go away. I’d be teaching, and suddenly I felt as though I would burst. I’d get a teacher to cover, and I’d make a beeline for the teachers’ lav. At that time, I could still move a lot quicker, and I always arrived ‘in time.’ That wouldn’t always be the case, though. Once more, I was on an evaluation trip not too far from home. The school had presented a beautiful opening ceremony; then they took everyone to a nice German restaurant for dinner. The foods were delicious, but ever so rich. As the evening began to wind down, I felt that feeling inside and I panicked. The room was full of people; how was I to escape? Fortunately, one of my team members came over, and I said we’d have to get to the hotel for our opening meeting. Without my asking, she gathered the coats and I could throw mine on and get out quickly. Once in my hotel room, I could take care of the matter. I escaped what could have been a totally humiliating experience.

Those events continued to happen, but fortunately always at home, and I could move quickly enough. Once more it occurred during a field day in my last year of teaching. Again I lucked out in that I could get home in mere minutes, remedy the problem, and get back to the field day. When I was a principal, it happened more and more – after a dinner out with some teachers (I literally had to dispose of my inner clothing, and wrap myself in paper towels,) on a drive home (it was a forty to fifty minute drive,) and once after everyone left for the day and I was alone. After that, I watched everything I ate, and I always escaped the embarrassment that could have ensued.

After I left the work world, I was able to once again time everything, and I was mostly at home. I had to let Hubby in on what was happening, and he often became my savior by helping me out. Now I keep track of when it might occur, and the worst of it seems to be gone – it’s about ten months between events now. I feel lucky that I’ve gotten away without being ‘caught,’ but I realize it could happen at any time. Two years ago, we left a summer party early because I felt things moving quickly, and I knew I wouldn’t make it home in time. I miss out on a lot just to avoid ‘losing it!’

I know that others have probably experienced similar situations, but I often feel so alone with it. I’m a private person in the real world, and I absolutely could never talk about this. However, here in my little virtual existence, I feel I can let it all out and be honest. So this will conclude my discussion, and I’ll go back to babbling about more appropriate topics. Thanks everyone for your support.

Peace,
Muff

Warriors

from Judy of Peace Be With You

I admire people
whose courage makes them willing
to slay the dragon.

They don’t run and hide.
Jaw set, eyes on fire, they fight.
Best kind of ally.

I am quite grateful
that some of those warriors
are fighting MS.

This concludes the 75th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 18, 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, November 16, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #55

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

Courage, Hope, Joy, Musings

Courage And A Little Hope 
by Blindbeard

At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like making a big friendly dog with a blank look, because that is how I feel when I go in there. I go in happy to see everyone and feel like I slobber all over them, which I probably do but they are too nice to tell me so. I finally came up with my idea and am now going to share it with you. No need to thank me; I'm generous like that.

I am going to make on the big square the Chinese sign for courage and on the little square the sign for hope. I have always said that for me having MS is more about courage than hope, and if I ever get another tattoo -- highly unlikely, the 2 I have are more than enough -- I would get the symbol for courage.

Hope is all well and good in a passive kind of way. I do have hope for the future and what may come of studies about MS, but I can't put all my diseased eggs into that basket. I do not foresee a cure for MS in my life time and can only hope for better drugs to help slow it down. I hope for medicines with better efficacy and with less side effects to come down the pipelines soon, but don't want to pin all my hopes on that lest I be disappointed when they do not come down that clogged pipeline.

Courage is active and I like active. For me, hope is sitting back and waiting, whereas courage is facing what is. Do I have the courage to face what this disease has done and most likely will do to me? Some days I do. Other days when I think about what the future may hold for me, I lose my courage and get scared. Then I start wrestling with the "what ifs," which I HATE and try to remember that I need to deal with what is right now and worry about the possible outcomes when they come. I want the courage to look this disease in the face without flinching. I want the courage to deal with what may come and to accept it with grace. The courage to deal with how the public may react to me -- mainly because I struggle with that some days and want the courage to go out even on my worst days instead of hiding at home. This is a scary disease and I think "courage" should replace "hope" as our catch word. It takes a lot of courage to face this disease and I need as much as I can get. I don't want to be the Cowardly Lion anymore.

Happy Place 
by Laura of Shine the Divine

You've probably heard people say go to your "happy place" before. Perhaps for you this "place" is by the sea, on top of a mountain, deep in a forest or by a crystal clear lake. Maybe it is in a cozy room warmed by a fire and you visualize yourself tucked in with a soft blanket. Your "happy place" might be different depending on the moment. Go to your "happy place" is an instruction to turn inward, toward a heart and mind space of calm, safety and joy...a place we visit for sanctuary when we are upset, when life feels overwhelming. This past week I found a new "happy place". This was a real happy place (as opposed to imagined) that buoyed my inner space to immediate joy and relaxation!

I spent an hour riding through the countryside and surrounding villages near my home. (I know, I know, "only drive for 20 minutes at a time"...but I took lots of pictures, so I reasoned that I was resting every time I stopped.) The truth is, I was getting tired. I was also noticing some anxiety arising as the fatigue was growing. Anxiety adds another layer to the tiredness, decreasing my ability to pay attention when driving. This combination has a potent impact on the functioning of my neurons. Just then, I noticed a sweet looking spot to stop, rest and refuel.


A bakery I had never noticed before. I parked my car, right next to the door, got out, took in a deep breath of spring-like air (we were having a few days of thaw) stepped inside the shop, leaning wearily on my cane. WoW! I felt like I had been transported to a realm of pure sensory delights. The aroma, the golden glow of fresh warm loaves, ahhh, these were not just any loaves. The sign in the parking lot said artisan bakery; these were well crafted works of art indeed. Elegant antler-like baguettes stacked, round loaves dressed with spirals of flour piled in baskets, a perfectly placed sprig (I think it was cilantro) and garlic, like a bud emerging from the center of one particularly striking doughy mound. Edible art. Did I mention the variety of grain combinations and all the seeds texturing the surfaces of the loaves yet? Or unusual dried fruits like figs, baked right in? I have never been the kind of woman to turn down fresh bread (even while others are scooping out the center of their bagels to save on carbs)...I LOVE BREAD! Just don't ask me to bake it myself...it is always, always a disaster. Ask my kids...no, never mind, don't ask my kids. They will surely tell you scary details about my lead-bread escapades of the past.

So, me being me, I asked if I could take some pictures of their comely loaves because they were so astonishingly beautiful. Go figure, the baker said, "Yes, of course." Hard to know from her smile if this was a regular request, but clearly it made her happy. I went out to the car, put down my glasses, picked up my camera, hobbled back in.

How to snap a photo while using a cane: Set the cane against a table. Position yourself to take stunning pictures of artistically arranged, painstakingly designed, deliciously baked bread. Voila.







Did I mention the scones with sharp Vermont cheddar & chives? I had to purchase some bread to be sure it was as mouth-wateringly delicious as it appeared to be. Again. WoW! These weren't just Good "looking" Loaves.

A cup of Jasmine tea in my left hand, camera in my back pocket; I balance tea, scone and loaf of fresh bread for dinner in hands while somehow opening the car door. Drive home. Rest until the kids return from school. Oh, no. One needs picking up. Get Belin. Drive her to PT. Park in handicapped space. Uh, oh, I forgot to bring my cane to PT. I'm tired, but I can manage, as it is not too far to the elevator and then the correct office. Drive home, debating in my mind...I would love some home-made vegetable soup to go with that bread with the roasted pumpkin seeds for dinner...I'm way too tired and it's too late to put up a pot of soup now. Drive a bit further than planned to purchase soup for the family from a favorite cafe to take home with us. It is now dark and I am really nervous about driving in the dark. My hands are numbing up...my right ankle painful. So much more for my now exhausted brain to process. But we make it home fine, and everyone is delighted by the gift of artisan bread, the best part of dinner.

Fast forward. I cannot find my cane anywhere. It's been 3 days. I've looked and looked. I figure, well, part of having MS (at least for me) is forgetfulness. I probably need to have several canes; this is going to happen sometimes. Some days I need the added assistance of a cane other days I don't, but I have to have one on hand always for the days I do. I say to Gord, "We better pick up a new cane today, maybe several...(I laugh at myself-I was always one to misplace things like keys for example...but a cane is a lot bigger and easier to spot than a set of keys...this is beyond my pre-MS forgetfulness). "Lets play hooky from life this morning" I suggest, "and go for a pretty drive before running errands"...and Gord says, "Show me where that bakery is while we are out."

We take a drive-I'm achy as it's -1F when we leave the house. My neurons are not appreciating the severe cold. I'm grateful to be a passenger, now that we are back to "normal" January temperatures. I snap some lovely photos (to post sometime in the future). We both feel relaxed and happy, joy riding on this cold, clear January morning. I actually remember where the bakery is located and we stop. He is as delighted as I was the first time I stepped inside. My heart sings on the second visit as well. We carefully select a hardy, crusty rye and two more of the cheddar & chive scones and tea (a light morning snack). I chat with the cashier in a friendly way. I don't know why, but for some reason, I look down and to the left edge of the counter. There it is, my cane, just hanging there next to the register! I say, "Hey, that's my cane, I've been looking everywhere for it!" The young woman looks at me more carefully, perhaps remembering my face or that I took photos (or maybe my unique accent). "Yeah, we thought it was some kind of miracle," she laughs, "person walks in with cane, tastes our bread and walks out healed."

I thought about this. In a way it was true. I walked out of there last week with a full, contented heart. I had been to my "Happy Place". I was distracted by JOY, and perhaps too many things in my hands to remember the cane. It was a healing of sorts. Temporary, as I really needed my cane that second morning, as fortune smiled and I found it again...but the lingering memory of the fragrance, warmth, colors and shapes of the breads in the bakery...this will be a healing place, a "happy place" to go to in my mind for a very long time.

Judowolf’s Musing on MS-Part3

Do you realize how many clubs in this country have no volunteer members? Club Med is not one. People go there to have wild sex, sun on the beach, have wild sex, enjoy fine dining, have mild sex, drink to excess, have WILD SEX, speed on wave runners, have a little sex, stay for seven days, return home, and have no sex. My wife and I belong to Club MS, a member of the Corporation of Chronic Diseases. Some of the other club members are: MD, MLS, Parkinson’s, diabetes, heart conditions, kidney conditions (also known as club dancing with dialysis), and club failure to thrive.

Corporate headquarters sends manuals to all new members and establishes the rules, regulations, fees, dues, laws, by-laws, fines, symptoms, all handicap aspects, misery associated with each, financial hardship, emotional stress, psychological breakdowns, marriage break ups, friendship ending, and relationship trauma. Hope you noticed there was no wild sex mentioned. Their sole purpose is to make all members totally miserable. Their motto is “We wouldn’t kill you, but we will make your life miserable.” The members of these clubs have many many problems dealing with their new club. All their freedom has been taken away. Independence is robbed quickly or slooowly. Their dependence on other people increases over time. They hate their disease. The members have no recourse but to deal with these issues.

“I just love the word issues. As a matter of fact I wrote a blog on issues.”
“Stop it! You are writing about a very important topic. You cannot go off on a tangent.”
“Okay! Okay! You are right.”
“Do you realize how many people in the world have these diseases? They are not laughing and take their disease very seriously. So get back on point and help these people out. The people don’t want to get more depressed reading about what they already know. Insight is what they want. So give them some of your vast experience regarding how to cope better.”
“No, it would take too long. I have an idea though. I could tell them a few stories about my wife, myself, and our third wheel (pain in the ass MS).”
“That’s better. Go for it. Make them laugh.”
“Okay, here we go.”

No more advice, about why, when, where, and how to cope with your disease. “I lied. LAUGH, LAUGH and LAUGH, some more is my advice. I hope you noticed I really screwed up on the last laugh. I love to see the red squiggly line under the words. It drives spell check crazy.”


Let’s see. My wife and I joined Club MS 20 years ago. Along with the membership card we received a 200 page manual, with the rules, regulations and an MS pamphlet titled “All the miseries you will be exposed to.” Someone from the kidney club told me their manual was 300 pages. “Boy we were lucky, I think?” We also got a new partner Ms. MS. She came absolutely free and shipping was included. Notice I have given her a title as she is still single. If MS was floating around in me it would be Mr. MS. Anyhow, she loves hanging around with me and the wife.

MS was kind enough to bring her girl friend Ms. Fatigue. They hang around together all the time. Fatigue is not our partner like MS. She is MS’s implementer, her main function is ruining our plans, and she has been highly successful. Not anymore. No! No! No! We called Ms. MS on her cell phone ten years ago and had a heart to heart with her. We told her we were going to do what we wanted when we wanted. Ms. MS who is always cool, calm and collected immediately consulted the manual and launched the following plagues on my wife.

The B&B plague (bladder and bowel)-75% success, FMS (fine motor skills ka-put)-97% success, D plague (dizziness permanent, now a dizzy broad)-99% success, CSAFMTAM (Can’t Stand Alone For More Than A Minute, this forced us to cut back on the dancing)-90% success, CNLC (Can No Longer Cook, I have that privilege now, lots of PB&J)-95% success, NLCDLMV ( No Longer Can Drive Large Moving Vehicles, had to give up her job as a crane operator, oops it was a bulldozer, no a steamroller, darn wrong again it was a massive destructive machine on wheels, forget it she can no longer drive)-100% success, V plague (Vision is poor. She can see no see-ums, but not airplanes. Go figure)-90% success. Ms. MS’s success rate was over 95% and in only 15 years was sitting on top of the world. The only kink in her armor was my wife’s walking. Reaching into her bag of plagues she sent out the W plague (WALKING).

Fifteen years we took all the plagues and never fought back. That would have been stupid on our part. We called Ms. MS on the cell again, got her voice mail, left a message, and are still waiting for her call. We needed help so we decided to go see The Great Houdini (Oops, he is dead). Instead we consulted The Shaman of Medical Healing (also known as Carlin the Chosen Neurologist). Over the years his advice and knowledge has been priceless. This time he was at a loss for words. He knew my wife was having problems walking and this concerned him. Then he revealed to us that Ms. MS had contacted him via cell and asked for his assistance. She was afraid my wife would get injured if she fell down, and was in desperate need of some type of medical device.


Ms. MS doesn’t really care about the people she has entered. When one of her plagues fails she will do anything to succeed. The Chosen had not seen my wife walk alone in a number of years and brought her out into the hall. Moving along the wall she walked to the end of the hall and back. Returning to his office he said,” I think it would be beneficial if you got some kind of medical device to help you walk.” He then offered my wife the following; cane, crutches, Canadian crutches, walker, rolling walker, wheelchair, electric wheelchair, scooter, electric scooter, go cart, hover round, wave runner, boat, speed boat, wagon, horse, carriage, and finally a pile of pillows attached to her body. Taking out his prescription pad he looked over at my wife and waited. Giving him the dagger eyes (when you get the dagger eyes usually your life flashes before you) my wife replied, “I have my walls.” Shaking his head he replied, “Guess this isn’t the time for an assistive device.”

That was five years ago. Ms. MS was infuriated and had to contact corporate. Corporate was not pleased and first sent Fatigues twin brother Mr. Exhaustion. He had a few successes but was defeated and left. My wife was still walking in our home. After eighteen years corporate was at a loss. This had never happened before and an immediate board meeting was convened. After three days of deliberation their only option was to call in MR. EXACERBATION. He had never failed and was feared by the MS members. The stories surrounding him are legendary. He came, set up shop, and after a few days of observation proceeded to throw the kitchen sink, stove, refrigerator, microwave, tub, living and dining room furniture, all electronics, and the clothes hamper at my wife, to no avail. My wife got up, brushed herself off, looked him in the eye and said, “NAH! NAH! NAH! NAH! NAH! NAH! NAH! NAH! HEY! HEY! HEY! GOOD-BYE.”

Ms. MS still slinks around and plans. Ms. Fatigue now has a strong hold and often goes to Club Med on vacation. I wonder if she has wild sex. Does Fatigue and sex belong in the same sentence? Oh, well. We still see The Chosen, my wife walks around the house with her walls and me her walking wall, club MS is threatening us with yearly membership fees (fat chance) and every time my wife walks it pisses off her partner Ms. MS. Oh well we will always belong to club MS, but it could be worse.
With kindest regards, Judowolf


This concludes the 55th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 25, 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, February 23, 2010.
Thank you.

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