Carnival of MS Bloggers #112

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

Acceptance: Anger, Uncertainty, and Murphy's Law

Get Mad, Get Really Mad 

by msrecess  

“That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.

As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her ”that’s so annoying, Mom.”  And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck.  Taking the MS out of the equation.  I chimed in with her frustration and you could hear how frustrated I was for her in my voice.  Strangely enough, I think it helped.  In that moment I was on her side.  I wasn’t saying you should do this, you should try this, Mom it could be worse.  Instead I was on her side and I was mad at MS for her.  I was mad at life for her.

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you.  Show you that you’re not alone and your feelings are justified.  As a self proclaimed ”problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs.  Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them.  Without knowing this you actually help them more by not trying to fix their problem than fixing it.

So today I got mad at MS.  I got mad with Mom.  We chimed in together about how this is so annoying.  How much this sucks.  How Mom just can’t win.  It felt good.

Lesson learned: I think I will get mad at MS more often.

I Want to Scream 

by msrecess 

I feel overwhelmed. I feel frustrated. I feel upset. I feel mad. I feel hurt.  I feel so many things that my initial reaction to them is to ignore them.  I like to think I am pretty good at dealing with problems head on but this one won’t go away.  There is also no end in sight.  It’s a problem that I can’t discuss with many people nor do I want to discuss it with many people.  My mom has MS and it sucks.  It absolutely sucks.  I can’t get a handle on it.  I can’t.  I am admitting it.  I don’t even know where to begin to get a handle on it because it is constantly changing.  There are new symptoms, new emotions, new issues to tackle, constantly new.  They also aren’t my symptoms.  They also aren’t symptoms I totally understand.  They are new terms and phrases.   MS also brings decisions that aren’t mine to make.  They are Mom’s to make.  I have no control over a situation that is infiltrating every ounce of my life.  My lack of knowing what to do is driving me crazy.  I literally sit as my head fills with thoughts and have no idea what to do.  I just want to curl back into my shell and do nothing.  I just want this to go away. I just want to scream.

I Feel the Earth...Move... 

by CJ of my MonSter Stories

Today was one of "those" days - when it seems as though someone might be sticking a probe in random areas of my brain and saying "Watch what happens when I do this!"  It was a very active day for what my neurologist calls "paresthesias", odd sensory disruptions that include tingling sensations and numbness, feelings of vibrations and/or electrical sensations in one or more body parts or my entire body, reduced sensation or heightened sensation.

At times, walking was difficult due to the intermittent numbness of the front part of my right foot combined with the sensation that I was stepping on golf balls.  Because of tingling and incoordination, I couldn't get my thumb and fingers working well enough to  pick up the dime and nickel to use for the parking meter.  Talking on the telephone was a problem because I was getting a shrill sound coming and going in my left ear and then my hearing would be diminished for several minutes at a time.

Sometimes the vibrations were so noticeable that I watched to see if other folks would say anything because I was sure we must be having an earthquake!  While sitting in a chair it felt as if the floor were vibrating beneath my feet and I could feel the sensation go through my body.  I was certain that everyone else had to be experiencing it too.

While preparing for bed, I was standing in the bathroom brushing my teeth.  Suddenly I felt the familiar rush of fatigue and weakness wash over me and it felt as if my entire body, to the core, had turned to Jell-O.  I've learned that it can happen at anytime, regardless of my level of activity, and there is nothing I can do to prevent it, fight it, or stop it.  I must lie down and do nothing...and so...I am.....

(Reposted by permission © Post by CJ Taylor.  Photo from NASA)

Grocery Shopping with MS Meets Murphy’s Law 

by Dave of Dave's ActiveMSers Blog 

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space.

Thanks, Murph, sometimes you aren’t so bad after all.


This concludes the 112th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 26, 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 24, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #98

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

Eager Bladders, Fatalistic Humor, Caregiver Survey

I. P. Freely

by My Odd Sock

Nah, this isn’t about the work of legendary folk-lore author, I. P. Freely

It’s about bladder control pure and simple.  Or lack thereof in regards to many of us with multiple sclerosis.

You see, most of the time I HAVE bladder control.  This is about the times when my bladder controls ME!  Like a loyal dog to its master, when it goes–I go!

My problem usually occurs in the morning when my eyes are bloodshot and my bladder is brimming like a cup of Maxwell House.

I do my quickest spasticity-induced, “quasi-shuffle-foot drag” (Government moves faster!) into the powder room.  But it isn’t quick enough for my seemingly ping-pong ball sized bladder.

Typical view of preferred potty distance.

Vicinity when my bladder opens flood-gates.

Because my bladder likes to get a jump start on the day as soon as I cross the threshold of the bathroom.  (In Track & Field, this is known as a “false-start.”)

Needless to say, my day begins with damp UnderRoos.  (Stealing the slogan from Folgers….”The worst part of waking up is urine in your lap!”)

My sometimes accidental basement bathroom.

But the bathroom isn’t the only place where yours truly has had bladder issues…outside in the yard…in the basement…in the shower–wherever I suddenly find myself far enough away from the potty…and not enough leg umph to get me there!

My problem seems to occur when I wait too long.  Then, when it is too late–I have to go–and go NOW!

Luckily the urge has never struck when I have been in public.

I’m sure you can relate to urgency mishaps.  Do they happen to you?  Are you prone to have problems any particular time of day?  Ever have an accident in public?

Please share your story in a comment.  Your words will have me sitting on the edge of my (toilet) seat with anticipation!

So I doubt the work of I. P. Freely will ever match the popularity of a James Mitchener, Stephen King or J. K. Rowlings, but the impact of the author’s words influence nearly everyday of my MS filled life.

Why the long face?

by Andy of our lady of the multiple sclerosi

New Neurologist: The First Visit

 

Props: 

Projected Sign:  No Eating Nor Drinking While in This Office (We’ve had too many spills!!!)

Table

Eyeglasses

Hospital Gown

File and pen

Neurologist (writing): “Do you have any problems with your eyes?”

Me (seated – table): “Not yet.”

Neurologist (writing): “Do you have any problems with bladder, bowel control?”

Me: “Not yet.”

Neurologist (Removes glasses, looks up appearing exasperated already): “You really shouldn’t be so fatalistic. Any problems swallowing?”

Me (pausing): “No.”

Perfect Chicken Broth

by Whitney at Nutrisclerosis

Use 1 whole chicken don't forget the feet. Cut the chicken up, put the whole thing in the stock pot and just barely cover it with water. Add 2 Tbs. of apple cider vinegar and let it soak for a half an hour to an hour. The chicken should be truly free range, preferable raised by someone you had a face to face conversation with about it's eating habits (lots of grass, bugs, lizards, seeds, snakes, and corn with  no rat or mouse shit in it) and habitat. Also no hormones or antibiotics. I am very  much into finding delicious heritage breeds like Dorking or Rhode Island Red. Ok, moving on.

Bring to a slow boil all the while adding: a slice of lemon (I use the end about a third of an inch slice), 2 bay leaves, salt, pepper, 1/2 cup of fresh parsley slightly chopped, 1 or 2 carrots, 1 onion, 1 or 2 stalks of celery, 3-5 cloves of garlic crushed. Once it boils, turn down to low and simmer for 2 hours. Skim the scum.

After 2 hours take the meat off the bones and put the bones back in and simmer them for another 20 or 30 minutes. Turn the heat off, let it cook a little and then strain it and throw all the chunks out. That's it there's the broth. Don't skim the fat off it when it cools. Eat the fat, or skim it off and use it to cook something else. Or give the fat to me, I will use it. I use the meat in recipes, and usually freeze it. I also triple this recipe and make it in my giant zillion quart stock pot.

MS Caregiver Survey

I (Lisa) received the same following email asking me to post this survey in the Carnival, but Patrick went beyond the call of duty.  Read his post below and complete the survey before October 21, 2011.

[Patrick] Received an interesting email:

“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society. The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

 www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.

“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the [National] MS Society so that they can learn how to better meet the needs of those caring for people with MS.”

Please note you must complete the survey by Friday, October 21st and “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
Caregivingly Yours, Patrick Leer


This concludes the 98th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 13, 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, October 11, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #95

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

Challenges of MS, Stories, Humor, and Hope

MS Really is Bad
by S.S.-O of Multiple Sclerosis and Me

One of the things that helped me come to terms with having MS was that "it's not the worst thing that could have happened"...I'm beginning to rethink that...MS is pretty darn bad...okay, maybe it isn't the worst, but it's up there with the rest of the bad things.  i think that what makes it worse than some other diseases is that the cause is unknown, it's unknown how it could affect anyone on any given day, the cure is unknown- there are just too many bloody unknowns.

One of the ways that it can affect us is with bladder control.  Some patients may not be able to control their bladders whilst others may not even be able to empty their bladders (no consistency either!!!!) for me, sometimes I pee just because there is a bathroom around - not necessarily because i have to pee, but because there is a bathroom i don't mind using available.  I never let it get to the point where my bladder is about to buss because if i get to that point, my ass is grass - there's no holding it for me!

I noticed that every now and again something would happen to me so i said to G, "you ever had to pee, used the bathroom and then u notice after you're done and u leave the bathroom (mind u) that, "shit!  i have to go again?"  Of course she said no and as usual, we moved on...i chalked it up to one of those things that just happens sometimes i guess.  I subscribe to the MS Society's monthly publication and 1 day i was reading it and i saw an article on the bladder control issue and it spoke about patients' not being able to empty their bladders and it hit me, "what the?!?!?! i guess that's what i've been experiencing"  i'd never thought that it was the MS - for once i didn't blame it and it actually is to blame.  When it happens, it's only at nite - i drink so much water (i always say, the only things i drink are water and alcohol, i don't mess with juice and sweet drink and all the other shit out there) that sometimes i have to get up 2 or 3 times to pee at nite - well when i do use the bathroom and get back into bed to go back to sleep, that's when it give me a nudge and says, "eh eh...we not done yet" so i have to get back out of the bed and head back to the bathroom.

I've had conversations with the MS, "i mean, do u really think that it's necessary to put me thru this????  i mean i have to get out the bed, stumble to the bathroom, pee, stumble back to bed, lie down to start going back to sleep and THEN u decide to let me know that "oh by the way, u're not done yet" so i have to start the whole bloody process al over AGAIN!!!"  i mean...really?!??!?!  UNNECESSARY walking is not something i ever look forward to; i try to save my walking for when i absolutely must do it and in my book, this situation counts as completely unnecessary and uncalled for.

Don't get me wrong, i still know that my situation is not the worst (for sure) and maybe MS isn't the worst, but it sure is damn bad!!

GRRRRRR!!!

No More Secs!!

Living, Laughing, and Loving Despite Multiple Sclerosis

by Ann Pietrangelo

An Excerpt:

“Your test results are all normal. At this point I would consider the three treatment options we spoke of. There is no hurry in making this decision, but would like to hear back from you in the next couple of weeks. If you have any questions or concerns please call me. Thanks.”

When I was a kid, doctor shows were all the rage on television. I’d seen the pronouncement of diagnosis hundreds of times. The kindly old doctor touches the patient’s hand and looks into his eyes as he breaks the news. He might put an arm around the patient’s shoulder, or comfort the worried spouse. The camera would then zoom in on the patient’s face so we can see the emotional impact up close and personal.

But it seems we’re not going to get our Marcus Welby moment … or anything that even vaguely resembles one.

The email that changes everything lands in my inbox on January 28, 2004, at 2:19 p.m. Just another email mixed with a batch of well-worn jokes and plenty of spam.

The test results are all normal. It is one of those good news/bad news situations. In this case, however, normal does not translate into a clean bill of health. It is in this instant, through this most impersonal exchange, that normal takes on a whole new meaning for me.

The email comes as no surprise. Diagnosis or not, life as I know it has already been altered beyond recognition. Still, the doctor doesn’t actually use the words. The meaning of the email, prompting me to decide on treatment options, is clear … but not clear enough. I want to hear the words, or at least read them. I want and need this diagnosis to somehow be declared official before I make any decisions. This is a very big deal.

The news is, for the moment, known only to the doctor and me. I fantasize briefly that if I delete the email, that if I pretend I don’t know, it won’t be true. If ignorance is bliss, maybe I can simply refuse to accept the information I’ve been given, like a child who ignores her mother’s call.

Until this moment, I could still hold out hope that it was all some colossal mistake or overreaction on my part; just one of those things that happens and is soon forgotten. Sure, I’ve had health problems like everyone else, but nothing like this.

Even while these thoughts run through my mind, I’m aware of another stream of consciousness floating alongside. I consider these feelings as being a normal first response because, after all, nobody plans to be disabled or sick. It’s just the luck of the draw and on this particular day it happens to be my turn to draw the short stick. I was never one of those “it won’t happen to me” types. I’m more of a “why not me?” kind of gal. I always figure I’m as good a target as anyone else, for both bad and good life events. Now, when it’s put to the test, is my chance to see if I truly subscribe to that philosophy.

My fantasy of just ignoring the news is short-lived; the realist in me wins out and I return to the task at hand. I hit the reply button and type, “Thank you. Does this mean I have a definite diagnosis of MS?” I marvel at my own matter-of-fact attitude. I am not about to let emotion rule the day and my stoic New England heritage is firmly in control...

The MS Claw

from A.D. of Everyday Battles

It’s truly an evil disease, this MS of mine. I’ve been using these blog posts to keep everyone up-to-date on fund-raising efforts, the events to ‘give back’ for those who’ve contributed, but I haven’t really given a reaction beyond telling people how thankful I am, how oh-so-humbling this experience has been thus far, how I am elated at the incredible response I’ve received from friends, family, strangers–but I’ve failed to give my own personal, first-person point-of-view of precisely how I feel about all of it. So, indulge me; let me ‘exhale’ on all of it.

I’m scared. I’m scared. I’m scared.

To put it in the right ‘frame’, you need to know that my Father was diagnosed in 1985, a couple of years prior to my entry into the world. As a teenager, I watched my Father’s disease progress–his own personal ‘MS claw’ had a grip, though the speed at which his claw grasped him was entirely different. It was 10 years before we began having to pick him up off the bathroom/bedroom/living room floor and help him get back to his feet. It was 15 years before its talons began to break the skin and draw blood; that is to say, before he had completely lost his ability to walk. He now lives in long-term care, his MS claw never leaving him, its grip only ever tightening as we all look on, helpless, powerless, and impotent to do something, anything for him. This understandably really defined what my biggest fear was.

That, one day, it’d be ME being picked up off the bathroom/bedroom/living room floor.  That, one day, it’d be me being grasped, clutched, left scarred and bleeding by my own MS claw. Then it happened. Biggest fear become reality. To my astonishment, the craziest thing happened: I dealt with it. And I continue to deal with it, as the claw tightens and loosens its grasp, I adjust. It never lets go. It has cut me several times. I can’t walk. I can’t type. I can’t contain my bladder’s contents. I have ‘difficulty’ with romantic intimacy (I will allow you, to quote the Immortal Bard, to “take it in what sense thou wilt”–use your imagination…).

But I deal. Everyday. I find it astounding how well a person can adjust to change–we all hate it, most of us, given the option, never would–but when you lay your cards out, drop the ones that serve no purpose, and focus on what matters and what’s important…and hope that you can pick up what you were missing for a good hand, the resiliency of the human spirit can take flight; if you’re as lucky as I am and are surrounded by courage, strength, and lots of good ol just plain awesome. I find it in my family. I find it in my friends. And they’re all pulling at the claw, trying to help release me from it’s seemingly herculean grasp. It’s why I’m still here. It’s why I still believe life is worth living, whether I’m running, walking, or rolling…

But I’m still scared.

I’m scared the $20k+ that my friends, family, et al helped me raise is all for naught.
I’m scared that I may find some relief from endovascular therapy only to watch and feel the squeeze of that claw as it does what it is programmed to do and just keep on squeezing, breaking my skin, drawing blood, leaving me scarred with no hope of recovery.
I figure since my biggest fear became my every waking second…it’s about time I found a new one, yeah?

One might say I’m being melodramatic. And perhaps I am. But despite how irrational it may seem and despite how easily you as an objective 3rd party may be able to poke holes in my fear-theories…it don’t take ‘em away.

The claw’s still there.

Its grip is still getting tighter.

1 month to the day ’til the plane hits the tarmac in San Jose. Until then…1 day at a time.

Despite MS, to Spite MS

by Dan Digmann

I keep telling Jennifer, “This really is going to happen!”

We’ve written our book, “Despite MS, to Spite MS.”

Our designer sent it to the printer on Tuesday, Aug. 2, and we’re hoping you are as excited to read it as we are to share it with you!

“Despite MS, to Spite MS” is a compilation of our essays describing our experiences, emotions and attitudes in living with this chronic disease of the central nervous system.

We were quite nervous and overwhelmed when it first was suggested to us that we should pursue self-publishing a book of our stories. But the more we thought about it, we realized it was a needed step for us to take to increase MS awareness and help people to move forward with their lives.

Guiding the themes of each section are some of the most inspirational and motivational haiku-style poems our friend and fellow blogger Judy Williams has written for her blog, Peace Be With You on the MS Journey. We are so honored to include her in our book!

Thinking back to the day in 2002 when I met Jennifer at the “Finding Your Buried Treasure” event in Frankenmuth, I recall one of the activities where we had to cut out magazine pictures to place on what was to be the treasure map for our lives.  The pictures were to be of things that were important to us.

Among the images I included were of a book – something I always had wanted to write –Bruce Springsteen (of course!) a church, and a family.

So here I am some eight years later self-publishing a book that includes essays I needed to receive copyright permission from a Lutheran Church organization and Springsteen to print. And I truly am blessed that I wrote, compiled and edited this book with my wife, Jennifer.  Visit the website www.despitemstospitems.com to learn more.

This concludes the 95th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 1, 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, August 30, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #88

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

laughter, motion, and self-advocacy

Focusing On Laughter

from Kaleidoscope Muff
 

I believe that once you’re diagnosed with MS, you land on every MS-connected mailing list. I constantly receive notices about lectures, advertisements about medicines, and magazines. Last week, the edition of MS Focus arrived, and it gave me a few smiles. That was the purpose, actually, since all the articles concerned laughter and its value in sickness. I’m usually a hard sell, but I bought into this theory, and I read nearly all of the articles. There were a few bloggers in there as well, and I really enjoyed reading an MS-related publication.

Then I asked myself, “Self do you really believe that ‘laughter is the best medicine?’” That’s when I realized how long it’s been since I just laughed out loud! Sure I’ll give a little giggle at something funny, or I’ll smile when I feel content (or even to just make others feel happy.) But when was the last time I really had a good laugh? Someone may tell a humorous joke – tee hee. I’ll read something written with a ‘tongue-in-cheek’ attitude – ha ha. There’s a sit com I’m watching – har har. But a really good, non-stop belly laugh? Too long ago…

I can remember, in my past, a lot of times wanting to laugh, and having to stifle it because of my location – usually church, but it’s happened elsewhere, too. I can still visualize that urge rising in me, and bending over to prevent the laugh from escaping. I know the feeling of the tears flooding my eyes because the laugh just wanted a release. Now, I wish I had even those feelings!

I’m not saying I’m not happy – basically I am. I get curmudgeonly over this crappy disease and all the losses I’ve incurred because of it. But my nature, my essence, my inner being is that of a happy soul. I’m just saying that I don’t laugh anymore. I don’t hear/see/feel something hysterically funny and respond by laughing. According to the magazine articles, such laughter can help us physically. So what do I do? Laughter is something you can’t truly fake. It’s either there, or it’s not.

One time, not too long ago, something happened that struck me, and I wanted to laugh. It had been so long since I used those muscles that I got a pain when the laughter began – a stitch in my side – and I stopped at once. Is that it? Do I not laugh because it hurts? I just don’t have the answer.

Am I an oddball? Will the laughter return someday? Is there something wrong with me? Are there others out there, who while feeling somewhat happy, cannot laugh? I need to give this some thought…

Peace,
Muff

The Magic of Motion
from Kate of Dancing with Monsters

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe,  heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.

MS Patients Have to Play Doctor

from Matt's Multiple Sclerosis

If there is one thing I have learned so far as a "newly" diagnosed Multiple Sclerosis patient (going on 1 year now) it's that the most devoted doctor an MS patient will probably meet is themselves... That's right... Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can't speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor's just can't seem to take care of business.

We (MS Patients) typically all do our own research on the disease, possible causes, possible remedies, cures, etc. I also find myself researching medications and double checking drug interactions among medications and there has in fact been several incidents where I was prescribed more then one medication at the same time that should not have been mixed... Who figured this out? My Neurologist? Nope. My Doctor? Nu-uh. My Pharmacist? Try Again. ME. That's right, Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient.

When you think about it this really isn't fair... Doctors spend years going to school so they can get that little piece of paper that says "Yup, your a doctor" but then it's like they simply stop learning and keeping up with the medical world and maybe even forget half of what they crammed into their heads before that very important test in college. So now it's up to US, the patients, to double check our doctors work (unpaid might I add) to make sure they aren't killing us....

This brings me to my next point: It's just a piece of paper... All the doctors and neurologist I have dealt with seem to get really offended when you try to show any sign of knowledge relating to the matter at hand... How dare we (MS Patients) go around our all knowing doctors to learn about a disease we will be stuck with for the rest of our lives, how dare we! News Flash: KNOWLEDGE IS FREE, the only thing your paying for at college is the piece of paper you get in the end that says "This person probably should know what he/she is talking about" but like any other class about any other topic you are going to have your students who barely passed, shouldn't have passed, or passed because they cheated. Now those people are giving us drugs and making life changing decisions for us. So please excuse our personal desire to study our particular issues in depth... We may not have a piece of paper to show that we are knowledgeable on the subject, but I guarantee you that a lot of us MS patients know just as much if not more about MS as some of these "half-ass" doctors out there.

Now I better stop here to make something clear... I don't mean to trash talk ALL doctors, I KNOW there are some really great, helpful, doctors out there and that it's only a matter of time before I find one of them but the point I aim to get across is that there are a LOT of MS patients who deal with this exact issue... Mostly everyone I know in fact and it shouldn't be that way... Doctors have a Job and that's not to walk around protecting their ego and insuring people call them "Dr. So and So". No, it's to help people: Hear that doctors? Your Job is to HELP people, so do your job and do it right, please! It's really not that hard...

So until I can find a good, responsible, caring, doctor, I have no choice but to work with the system, I got. If I'm going to have to play doctor half the time then I am going to get what I want ALL the time... I know how I sound right now, really, I do, but you know what, this is how I HAVE to be, this is the attitude I HAVE to have in order for me to accomplish something positive with my health. I know what is wrong with me, I know what problems I have, and I am the only one who has taken the time to really research those problems and the possible solutions for them in depth. My doctors have done no such thing. So yes, I do believe that my treatment ideas are better then what has been so far recommended to me: nothing.

So I will continue seeing doctor after doctor until I find one that will actually listen and take what I have into consideration rather then immediately going into self-defense mode to protect their ever so fragile ego. I should be able to go to a neurologist and say "look this this and that didn't work, I feel like this, so I was thinking we* should try this and look into alternative means of treatment such as this and that" without that doctor shutting me down and ignoring everything I have to say simply because they don't want to hear me playing doctor.

If you don't want your patients playing doctor then don't put them in a position where they feel they have to...

I want to get better and I want to get better more than my doctors want me to get better so I will continue to play doctor until I get what I want and that's ultimately to get healthy again. I will continue to learn on my own, learn from others, and maybe even start schooling so that I can confidently say I know what I'm talking about. Sure most neurologist probably went over Multiple Sclerosis briefly in college but guess what, I have a vested interest in this information and in making sure that I have my facts straight so believe me when I say, if I am going to play doctor, I am going to play a doctor who is doing their job RIGHT.

Don't Stop Learning!


This concludes the 88th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 2, 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, May 31, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #78

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

Three Years of the Carnival!!

Finding the Stillness

from Judy at Peace Be With You

Sometimes one gets lost
in the hustle and bustle
and forgets to breathe.

Finding one’s stillness
becomes elusive when pressed
to match the world’s whir.

A moment of peace
restores and rejuvenates
so one can go on.

Have a Positive Attitude About MS!!

by Trish of These Pretzels Are Making Me Thirsty

http://xkcd.com/

Twelve days of MS Christmas

by Mis of Just My Thoughts...

On the first day of Christmas MS gave to me, a painful shot in the ass.

On the second day of Christmas MS gave to me, two vision impaired eyeballs

and a painful shot in the ass.

On the third day of Christmas MS gave to me, three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the fourth day of Christmas MS gave to me, four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the fifth day of Christmas MS gave to me, five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the sixth day of Christmas MS gave to me, six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the seventh day of Christmas MS gave to me, seven tricked out power scooters

six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the eighth day of Christmas MS gave to me, eight stuttering brain farts

seven tricked out power scooters

six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the ninth day of Christmas MS gave to me, nine tingling numb sensations

eight stuttering brain farts

seven tricked out power scooters

six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the tenth day of Christmas MS gave to me, ten ungraceful falls

nine tingling numb sensations

eight stuttering brain farts

seven tricked out power scooters

six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the eleventh day of Christmas MS gave to me, eleven different medications to take daily

ten ungraceful falls

nine tingling numb sensations

eight stuttering brain farts

seven tricked out power scooters

six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass.

On the twelfth day of Christmas MS gave to me, twelve more months of random weird pain

eleven different medications to take daily

ten ungraceful falls

nine tingling numb sensations

eight stuttering brain farts

seven tricked out power scooters

six handicapped parking permits

five... glowing...lesions!!

four spastic limbs

three days of Solumedrol

two vision impaired eyeballs

and a painful shot in the ass!

This concludes the 78th edition and third year of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 6, 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, January 4, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #74

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

Memory, Language, and Humor

Proteins and Memory

by Mary of Travelogue for the Universe

Proteins and Memory,
are they one & the same?
If so true, it makes proteins
so important in our game.
The shots of proteins like the bee sting
can slow the MonSter that I know.
Is my brain full of complex
Protein strands imprinted with
Memories of long ago?
And will the funding last forever,
Will the protein soup be ever?
Will they some day, find a new way
to deliver protein feed.
To chew or swallow, cook or wallow in exactly
what I need?
For now I take the proteins,
shots really not that bad.
The only way I can, The only way is how
to keep the MonSter
far out on the curb.

Lost in translation

by Jenn of Losing It

The day we finally went to the ER was the day I couldn’t put on my underwear and then face-planted in my kitchen, my body contorted on the floor like some sort of crime-scene chalk outline. I thought about how I might be paralyzed and wondered which of my darling pets would start gnawing me first. Et tu, Ella? (Just to clarify: I wasn’t naked in my kitchen. Separate incidents. Not that there’s anything wrong with that.)

So we head to Baptist NLR, the closest hospital to our house, and begin the obligatory ER wait. I see the nurse, another nurse, a doctor, and then a neurologist. He is a young guy, but he put me immediately at ease. He was competent, thoughtful, thorough, and Indian. I only point this out because, as it will become clear soon, there was a slight language barrier.

He did all of the standard neurological tests (I know this because I had epilepsy when I was younger). And then he had me walk up and down the hallway of the ER. I say walk, but it was more of a shuffle-lurch I was rocking at that point. I think he knew within the first five minutes what was wrong with me, but, like I said, he’s thorough.

And then we went back to the small ER room. He told us I would be staying at the hospital, which came as quite a shock because I expected to be in and out and on my merry little way. (Why I thought this, I still don’t know. Optimism? Denial?) I just nodded, trying to be the perfect patient, even though my throat was closing up as the anxiety crept in. His words were competing with my inner dialogue, and losing.

I needed to stay for days of observation and treatment, he told us. And I would get on steel rods for those five days, he said. He left the room to get my admittance paperwork started.

“Steel rods?” I blurted incredulously to Nick, my carefully constructed composure now crumbling. “Why on earth would I get temporary steel rods put in me? What good will that do? I don’t want surgery. Let’s leave. I’ll just keep the gown on.”

I was in hysterics.

Try as he may, Nick couldn’t stifle his laughter, which nearly provoked me to start throwing hospital equipment at him (Latex gloves, by the way, aren’t exactly as threatening as they may at first seem).

“Steroids, Jenn. He’s going to put you on a five-day treatment of steroids.”

“Oh.”

I began giggling uncontrollably. Nick joined in, our chuckling filling that small room with the bad fluorescent lights and echoing down the hallway.

And in that moment we knew: Whatever came our way, we’d be OK.

Potty Humor in New Jersey

by Lisa of Brass and Ivory

Folks with MS are not the only ones who find value in appropriately-placed facilities.

 

"Reserved Seating"

"I Have To Pee"

After admiring the handiwork of these signs (and laughing), I just had to document the spottings.  Have you spotted clever signs on your journeys?  If so, please share them in the comments section.

This concludes the 74th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 4, 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 2, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #73

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

A Good Stretch and Tickling the Funny Bone

What’s a trip to Chicago without the Cubs?

by Jennifer Digmann

It was eight years ago today – September 28, 2010. Eight years ago that I met Dan and told my mom, “He’s really cute and sweet, but mom – he likes Springsteen. Yuck! And he loves baseball. How boring!!”

Now eight years later, not only am I happily married to Dan, but I’ve seen Bruce in concert six times – loving every one of them. And on our honeymoon, we saw the Boston Red Sox play baseball in Toronto. So it shouldn’t come as much of a surprise that we celebrated our fifth anniversary by meeting up with friends from Iowa to see a Cubs game in Chicago.

What a gorgeous, sunny day for baseball.

Dan, our friends Pam, Steve, D.J., Deb, and I found our seats about 30 minutes before the first pitch.  Wrigley Field, what a great evening!!

Our seats were at the very back of the second tier on the third base side. And if you regularly read our blog or know my life with MS, you know a bathroom has to be part of this story. The family restrooms, the ones I use with Dan’s help, unfortunately were located either on the level above us or on the level below us. Imagine having to wait for the elevator every time you had to go to the bathroom!

That’s exactly what I had to do. But it only took me one such trip before tired of making it. Luckily, we noticed vacant accessible seats closer to the family restroom, which coincidently had an incredible view of the ballpark. So I kindly asked a friendly usher, “How can we get seats like these? You know, ones closer to the bathrooms I use?” He understood my situation and encouraged me to check with Fan Services to inquire about upgrading our tickets.

Long story short: We were able to upgrade close to the family restroom on the first level, which landed us 10 rows from the field right behind home plate! It cost us a little more for these great seats, but it was SO worth it.

And just when the night seemed to be perfect, remember that band-aid on Dan’s forehead I mentioned in my last blog? Here’s the less than perfect way that happened - there had to be a way to get me and my powerchair that close to the field, and it involved me taking a motorized chairlift. In helping to secure my chair to said chairlift, my loving husband stumbled - stupid numb MS feet - and he hit his head hard.

Dan had to be treated by the nurses in the ballpark’s First Aid station. They were quick to treat him (no stitches needed!) and he was back to the game before the second inning ended. Hence his name is now, and forever, on file at Wrigley Field… granted it is in medical records but still, how many of us can say that?

What a stretch!

The game was great, highlighted by standing with Dan during the seventh-inning stretch where Hall of Fame running back Gale Sayers sang “Take Me Out to the Ball Game.”

What a stretch!

And speaking of singing, in the eighth inning three ballpark ushers sang “Happy Anniversary” to us and presented us with a ball used during the game. It even has dirt and scuffs on it. What a souvenir!

And what a night for me, a girl who once hated baseball. A girl who doesn’t let multiple sclerosis stand in the way of experiencing life. A great life with that cute man I met eight years ago.

True Story

from Multiple Sclerosis & Me by S.S-O

Saturday I had to take my car into Honda.  I got there and the Honda man opened my door.  I told him my usual, "I'll take a moment..." because in addition to just taking my time to get out the car, I was juggling a book, a cup of coffee, the cane, my phone and my handbag.

He said, "no problem...take ur time.  Would u like me to hold something for u?"

I said, "oh yes, thank u"...

 and handed him the cane!!

It Made Me Laugh
by Karen of Meandering...One moment please
 

Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."

******************************

******************************

Going off the SWANK Diet!

This concludes the 73rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 21, 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, October 19, 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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