I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Sincerely,
Lisa Emrich

Thursday, August 18, 2011

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!!!


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.

http://www.nomoresecs.com/downloads/no_more_secs_600x800_72ppi.jpg
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...


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.


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.

Thursday, August 4, 2011

Carnival of MS Bloggers #94

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

Good Ol' Summertime

by Ivy at Life with MS and EDS
In a modest white house,
There was a fridge with blue containers
Stocked with hated Rebif shots
and a woman sick of dealing with…

Evenings wasted each week – three
The need to drink water til the constant need to pee

Heat packs and popping two Aleve
Itchy shot spots nothing could relieve

Shot spots that were also black and blue
Constant fears of waking with the flu

An auto-injector that’s too powerful
A medicine’s whose effectiveness is rather doubtful

Goodbye hate and fear.
Goodbye drinking til my pee is clear.

Goodbye Aleve.
Goodbye time thieve.

Goodbye auto-injector contraptions.
Goodbye injection site reactions.

Goodbye flu-like side effects.
Goodbye mounting skin defects.

Goodbye six full sharps containers that live on top of my fridge.
(Oh wait, I’m stuck with those since no one will take them from me!)

GOODBYE REBIF!

Here I come, Gilenya! Hope you and I get along well!
(Obviously inspired by, “Goodnight Moon”)


by Karen of Meandering...One moment please

You know what I've been thinking lately...


...but it's the only one I have,
so I'm going to have to go with it,
and figure out how to make it fit.



by Gracie's Mum

About two years ago Grace went through a phase where she believed that there were monsters in her room.

Not just under the bed, not just in the closet or behind her door.

No, she believed that they came in through the night, from where we don’t know, but she believed in them and we let her and we took the necessary precautions to make her feel confident that the monsters wouldn’t be welcome in her room.

We made a sign.

She couldn’t write or read at this point but she knew what it said:

No Monsters Allowed.

She decorated it and we hung it up on her door so that at night, when it was closed, the monsters knew to turn around and go back from where ever it was that they came.

And it stayed there.

It didn’t come down during showings on the house.

It didn’t come down until moving day morning and only then to be re-hung on the door to her new bedroom.

She still believes that monsters are a threat to her sound sleep. To her security. And although she’s never seen a monster, she knows that the risk is far too great to not hang a sign.

It’s astounding how much adults underestimate the intuition of a child.

It’s no secret that I do not have a spiritual, mystical or religious system of beliefs and that I am an agnostic.

But there is something, somewhere deep inside me, that believes that sometimes things are more than coincidence.

Not more than six months after hanging that sign, I, Gracie’s Mum, was diagnosed with MS.

And, it is in fact a monster.

It goes unseen, unheard, unfelt, for months. But you know it’s there.

And it was.

And it is.

And we live with this monster, the three of us, every day.

It lurks behind doors, at the top of stairs, at the bottom of hills.

It laughs as I get in and out of the tub, daring me to slip and fall.

It nags me and taunts me whenever I walk from a smooth surface to rough waiting for me to lose my footing.

It waits patiently in the dark for the last minute before spoiling a long planned family outing with unexplainable  fatigue or dizziness or lack of balance or all of the above mixed together in a toxic cocktail that can only be cured by a few days in bed.

And in spite of all the signs, or ropes of garlic, or crucifixes, séances or exorcisms, this monster, although not allowed, not invited, will still come through every and any open door in our lives.

It’s the in between times that matter.

The time between visits from this monster that matter the most.

Also, the comfort in knowing we are not the only family being plagued by such a terrifying monster sometimes does more than any sign could.

Knowing there are others out there, like us, going about their business, planting gardens, planning trips, getting ready to shop for back to school stuff, all the while looking over their shoulder, under beds, behind doors and in closets, is often enough to get though the paranoid induced moments in our lives.

MS is a monster in our lives, and in the lives of many others.

MS is a monster in Jeff and Sarah's life. And they have a team fighting this monster. And that team raised thousands and thousands of dollars to pay him to get the hell out of their lives.

And our life.

But, we are not hiding him under a bed.

No.

We will continue to show him off and talk about him, and write about him and lure him out of his hiding and take him for a long walk raising thousands of dollars to show him how much we hate his guts.

And if that doesn’t work, then there is always Gracie’s sign.


Happy Hump Day and don’t forget to look under your bed tonight before turning off the light!


by Tina of MS Keeps Life Interesting

Some time ago, I wrote about my beloved MS Magnet.  Capitalized, because it meant that much to me.  You see...my tailgate magnets tell an abbreviated story.  A story of me!  I think of car magnets as old skool "colorforms", but for grown ups.  Oh how I loved to play with colorforms.

Admittedly, some folks overutilize.  You've seen this, right?  I was behind one today.  They had quite the collection of hot vacation spot abbreviation stickers and assorted magnets.  I can play that game, too!  If they made stickers that said "WORK" and "BATHROOM" and "HOME", I could put 'em on my tailgate, 'cause those are the hot spots I frequent most;-)  Furthermore, there should be ample space for each magnet.  It's cumbersome to digest as I'm waiting for my light to turn green.  I'll bet when they were kids, they used 2 sets of colorforms, thereby overcrowding and discombobulating the scene they were attempting to create.  But I digress...

I had MS Magnet when I walked from my car to the store.  Twenty-five minutes later, I returned with my groceries, reached for the liftgate handle, and saw a dingy outline of where MS Magnet used to cling.  I let out a fairly loud, "WHAT THE!", followed by, "OH COME ON!  SERIOUSLY???"  I rubbed my blurry left eye, hoping it was a trick.  I looked on the ground, hoping it fell off.  I knelt down to look under the car.  I looked closer at the dingy outline and noticed clean smudges on my dirty car.  Smudges in which fingers were.  Suddenly, it became crystal clear.  MS Magnet was...taken.  I was so angry that I wanted to throw my carton of eggs on the ground in frustration.  Because when I get that angry, I throw stuff.  Alas, I forgot the list on the counter again.  The list those eggs were on.  And so I forgot to buy eggs.  Thankfully...

I bid you farewell, MS Magnet:'-(  I had a sinking feeling that our time together would be limited.  So many people commented on you, asking where it was I got you...they knew someone with ms and wanted you to ride around with them in order to honor that person.  Even my husband has one just like you, which surprised me.  You figure...me, him, and ms are stuck together for the rest of our lives.  It's the whole "in sickness and in health" deal.  You'd think the last thing he'd want would be anything ms-related stuck to his truck.  Though he sacrificially offered that magnet to me as a replacement, I cannot accept.  Losing you is hard enough.  I cannot risk a rinse and repeat occurrence.

"Sooner or later in life, the things you love you lose" - Florence + The Machine

"'Tis better to have had MS Magnet and lost than never to have had MS Magnet at all..." - me


by Patrick of Caregivingly Yours

(re-posted from August 2009)


Accessible fruit! Who would have thought?

With Patti’s Multiple Sclerosis progression holding and eating some of her favorite foods has become too challenging. As her spouse caregiver, I am always on the look out for solutions and options that can enable her.

Stopping at a road side fruit stand I discovered Donut Peaches (aka Saturn Peaches, aka Angel Peaches, aka Chinese Pan Tao Peaches).

Patti loves peaches. However MS progression was making holding and eating a peach next to impossible. That is until we tried “accessible” donut peaches! They were a hit, easy to hold and easy to eat!

Don’t just take our word for it. Mother Earth News offers the top reasons to eat a Donut Peach:

1. They taste better than other peaches. They're sweeter, with almond overtones.
2. They are lower in acid than other peaches.
3. The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.
4. The fruit's thin, red skin has little or no fuzz.
5. Their small size lends itself to being eaten out of hand.

You just have to like a snack high in Vitamins A and C and only 37 calories per peach.

Thank God when nature lends you a hand.

... and unlike the summer of 2009, this summer they are readily available in the produce section of Giant Food grocery stores at least here in Pennsylvania.


This concludes the 94th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 18, 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 16, 2011.

Thank you.

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones

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