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.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, March 25, 2010

Carnival of MS Bloggers #58

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

Life with Multiple Sclerosis

The Perfect Ending!
by Paula of MS Scars 2 Stars

My report on my first time Dahn Yoga class experience is almost at the end. But I did promise to be candid in my experience and express my thoughts about the event, and I want to try to convey the support that the other participants gave to help each other. This was very clear to me when I attempted to get off the floor, but more about that later. I was of course unable to stand on my own and I was sitting in the middle of the floor. So with the help of my husband and others I was pulled to the nearest wall for support.

As I sat with my “back against the wall” I thought to myself; that is what the phrase means, “Got your back against the wall.” It was very supportive and solidly reassuring, although I knew I wasn’t going anywhere without help. Then strangely, everyone else sat down on the floor in a circle around me. We were asked if we would like some hot tea by our instructor. After serving us all a cup of tea, she sat on the floor and giving each person her attention asked each of us individually “How did you feel about the exercises?” How has the routine helped you? Everyone shared their thoughts in a group therapy style atmosphere quietly sharing their accomplishments. After, the tea and sharing was finished everyone was ready to leave the session.

Now it was time for me to stand up, everyone offered eagerly to assist me. But the smallest lady in the class affirmed she could help me stand very confidently. I thought, sure this attempt would be human folly. After all I had warned them that they would need a crane to get me off the floor. But, she looked me over and asked if I was ready, and before I could reply with “I don’t think you can…” I was standing. That was as big of a highlight to my day as getting on the floor. I am by no means recommending this be tried by everyone because, she later stated that she had worked in a hospital and had some formal training and experience with people who have trouble walking and standing.

The class was over and I felt great, lots of energy but relaxed!

Some things you see with bad vision are funny or
creepy, like a rubberband that looks like a cockroach.

Today everything seems to be seen through a
screen of fine silk, a pale green. sheer and almost white.
And then there are almost not-there
pale pink batik blotches all over everything, do you see it?

I can almost remember this scarf,
ancient and frail, the green & pink so faded as to be
almost the same, and bouncing around when I look away.
I think that scarf belonged to Lee's grandmother,
when they
went to live in a home, a Home, they left behind a life

went to live in a home, a Home, they left behind a lifetime's worth of
of junk that was unworthy of the move and the limited
space at the new Home. We went one morning (after
AmPm, or what was the other one that opened after
Laight Again closed for the morning? '

We had been out all night, not drinking 'cause Lee didn't
like the way I acted when I drank, funny to everyone

slutty. This was fine, we were both a hilarious buddy
road-trip movie,
buncing from set to set. So we arrived at the
grandparents old
to pick through all their crazy wild stuff. The grandmother
seemed to have been a flapper, with these tiny-size
delicate-brazen heavy silk with beads beading all
beads beading all
up & down, and long bead-string fringes. Lee took all
the tiny sexy women's stuff, and I took one frail
scarf of hers, the rest the old-man stuff,
green & gold seersucker,
legs barely more than shorts.
now I am seeing everything through a shadow of this
disintegrating scarf, too delicate to survive except burned
just slightly into my retinas forever.

The Grandfather also left a stunning pair of huge swim
trunks, I bound them up with a studded belt, just the
skinny knees and then the cowboy boots. We were
such a beautiful pair, really too bad I didn't want to be
in love like that, her girlfriend, and she always knew
"I" would leave "her" for some man as I did almost every
night, as she did even more,
her plans of lesbionics forgotten
for any gaunt-faced guy, who, even better, if he looked
like a junkie, the jaw dropping down like that can really
make those cheekbones shine.
She feared I would leave her to have kids,
with my wide hips & like my mom had done,
get pregnant and get married in the tradition of....

But years later Lee came back to town with her baby girl,
and her
husband waiting at home in San Fransisco
at his blotter-crazy museum and whatever family furniture
or knickknacks that would accumulate in the gravity of
my gone, gone Lee.

I got married too, but it was imaginary. But
everyone saw we were so close, and we had
a wedding so beautiful in the huge snowflakes outside,

and three professional photographers taking even 3Dimensional
a wedding so beautiful in the huge snowflakes outside,

These giant flakes could also still be blurring
I look at, like if the flakes would melt on my open eyes,
there would be tiny searing flashes of white that was
then flickering to almost green, but really so
confusing in that almost-there way, I really can't see
anything through the invisible batik blotches.

I was telling this story to Charlie,
or some part of it,

and he revealed the source of my confusion, this

horrible odyssey that ended with Spackle run outside
and lost in the hall, of course I was exhausted, and not
used to wielding the walker and blocking the cat-bolt
at the same time, and so tired after falling in 14th street
barely catching myself with my finger tips on the honking
dead-stop cab. And staying up til 7 am and waking up
at only 8, and so tired still. He explained that all this
happened in real life
but over nearly three days without sleeping....
not just in the single day that I was trying to
create for myself,
piecing all the memories together best I could into ONE day
and how awful my made-up memory of that day was.

Of course, Charlie had claimed Spackle and she was fine,
Zoey had found her in the hall, a beautiful angel
to sweep up my pit-cat, big shouldered but trembly.

Spack gave Charlie the full body fluff when she bolted up
the stairs and into our embarrassing mess. I guess
Lorenzo saw all the crap everywhere, but it looks
right now likeI am typing on the face of this page, and the BG image
is bouncing from the contrast of the pink & green,
bouncing just fast enough to obscure everything
I have written here.

note: 05/08/09 seems story could end HERE
if not sooner

your letter ends perfectly "g'night." I'm so tired and
having trouble piecing the day together,
How did I go to the grocery twice?
I must have forgotten something important, I was
pre-occupied with scones all day.
I know, enough with the damn
scones, they are tasteless blobs
of overcooked dough. The best.

Today I stopped in the coffee shop to sniff the forbidden
They had a misshaped lump labeled "scone,"
and it had an odd greyish shellac, like some stale glaze
that was reverting
to powdered sugar right before my eyes.

No wonder I fell in the street, but that was yesterday now.

And then there are almost not-there
pale pink batik blotches all over everything, do you see it?

This concludes the 58th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 8, 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, April 6, 2010.
Thank you.
Comments for this post.

Thursday, March 11, 2010

Carnival of MS Bloggers #57

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

Poetry and Life with Multiple Sclerosis

Walking Then and Now
by Judy of Peace Be With You

Walking is routine
for others but not for me.
I wish it were, though.

It used to be so.
I shopped and played like them.
Didn’t give it thought.

Now my walking needs
certain aides and attention.
Preparation, too.

Heidi is a BAMF,
Guest Blog at MSUnderstood

I had a moment the other day, sitting outside the post office, waiting for Glenn. I was doing what I have been doing for a couple of years now; observing. I am mesmerized, quite honestly, and watch others with full mobility just move. The simplistic way in which they walk in, just moving to get from here to there. Barely a thought in their minds. They want to run, they run. They want to jog, they jog. So on, so forth. And I sit here, watching them.

I am drawn to young and old…the young that lock their knees on cue just for the fun of ‘walking funny’. …the old, and their slow and steady shuffle….a couple of adolescent girls that clasp hands and run as fast as they can to the storefront….the teens that are skipping and stomping and kicking as they walk….

It is just surreal to me. Do you know, I honestly cannot remember what it even ‘feels’ like, to hop on one foot? I am unsure how I would even begin to physically do it. Apparently, the lack of ability has caused some sort of amnesia.

Still, fact is, I used to be able to do what they are all doing. I used to do it effortlessly, and with little thought about doing it.

Perhaps before I get into it, I should dish out my MS resume:
  1. Cannot walk without assistance. That is just a way of saying I need a fucking arm or a wall in order to keep from falling on my face.
  2. Knees and ankles that give out with absolutely zero notice. Keeps going up and down stairs really interesting….also adds fun when I am at the sink trying to brush my teeth.
  3. Spasticity…..OMFG. I am forever stiff, have chronic pain and when my legs move to walk….I actually kind of resemble the Tin-Man from the wizard of Oz…sans oil.
  4. Numbness. From the waist down. You know, I am not even going to go there. Use your imagination.
  5. Weakness and fatigue. Well, I went an entire year of having an active diagnosis of major depressive disorder. MDD, for all of you DSM freaks.
  6. Nystagmus…it has a ‘life of the party’ element to it…gather round, and watch my eye bounce.
  7. Electric shock sensations, crawling bugs sensations….shit, a whole gamut of sensations that should be foreign to me. When my numb feet touch cold cement, they feel like they are burning. My demented, destroyed and dyslexic little nervous system. Etc, mostly etc.
Anyhoo, before this turns into a depressing heap of MS shit, I shall move forward. (moving forward….just makes me laugh)

Ok, so I have dogs…2 dachshunds and a GSD. My dachshund, Rocky, had a disc disease. An irreversible degenerative disc disease. His little vertebrae is basically mineralizing as we speak. He has been paralyzed twice, he recovered both times. Took him a while, but being a stubborn & fearless little badger hound, he did it.

Now, here is my thing: I am here, watching him. (This is when he was paralyzed.) No matter what, he kept going. He didn’t let it stop him. I had a cart made for him, which he hated….he would much rather drag his little legs behind him than have them dangle from the cart. If you met him once, you’d get that. He is a noble & stolid little thing. A whopping 28 lbs of hell. Ok, so he would drag his little lifeless legs through the tall grass after a bug, or if he heard an imaginary sound that would cause him to speed off in a direction barking his head off. He never stopped enjoying his life. He kept his passion. Yes, his dog lust for life.

And I know…he doesn’t have the brain capacity for insight, he isn’t contemplative…he just was spurred forth by pure animal instinct. I know all of that. I am also aware that even while he was dragging himself around over the grass in the yard, my other two dogs never once said ‘hey, rocky…are you disabled? Do you need help? “

They never even noticed. Because it didn’t matter.
If only that were the way for us dumb-ass humans, huh?

Nah. And before anyone allows themselves to read my words as purely negative, or to view me as a complete misanthrope…keep an open mind. I am a realist. And reality isn’t all sunshine beams shining out your ass. And just for the record, not everyone wants you to shoot sunshine beams up into their ass either. Sometimes they just want to bitch and be heard and be done with it. Just like any other (based on assumption) chronic illness, there isn’t going to be a ‘happy day’ every day. That said, there also isn’t going to be a negative day every day. (*except for the Pollyanna’s and the total assholes….they are either all of this or all of that)

My MS has done a lot for me. In so many ways. It has given me excuse slip after excuse slip. It has given me a pity card. It has lacquered me with a thick coat of guilt that I can’t seem to shake off me, no matter how hard I try. It has given me people that do not know how to act around me, or has caused them to sound like a moron because they don’t know what to say. It has caused them to be ironic, and apologetic, and I seem to inspire the inner-life coach in a lot of folks.

The ones that say,:
‘well, it could be worse’. yeah, no shit.
‘things will get better’….really?
‘you have to keep positive’….mmmmm, that is one of my favorites.
‘everything happens for a reason’. great. So, basically some divine providence has some serous fucking explaining to do. So I then ponder my life, trying to mull over the profundity of my ‘sins’.

Nah, it is just something for them to say. We hold onto sentiment, warm fuzzies make us feel better. A positive attitude doesn’t make me walk any better. In fact, I am not getting any better.

But, all of this makes me a negative asshole. Then, after my reality crashes into someone’s sunshine filled daydream, I am the one comforting them.

I am not negative. I laugh when I think shit is funny. I read, paint and play with my dog. I gossip with my sister and we bitch about life. I am a college student. I have been in a relationship with Glenn since the late 90’s. I am passionate about art and music. I have beliefs, and hopes and dreams.

And, I have MS.

Remembering to Breathe
by Judy of Peace Be With You

I stare at the top
of my Peace Be With You blog,
needing its message.

The calm rolling waves
ease onto the sandy shore;
blue and white on tan.

The movement helps me
remember to breathe again
and let go of fear.

Some babies sleep all the time and love their bouncer. G. was NOT one of those babies! I would fondly refer to him as my “high maintenance little man”. He would refuse to be put down; only sleep on me; refuse to go to anyone other his daddy, big sis, or me; and often insisted that we stand and hold him instead of sit and hold him. I think he was older than four months old before both Ed and I got to sit down to eat a meal at the same time, sans baby.

By time G. was six months, I had decided that I wanted another baby, but there was NO way that I was going to wait until he was easier and then start all over again. When I was done with this stage, I wanted to be DONE! Anyway, it’s not like I was a Spring chick and I definitely wasn’t getting any younger. We decided to start trying for baby #2.

About 2 1/2 months later, I ended my shift on the Paramedic unit at 7am, rolled up my sleeping bag, put it in my locker, probably forgot and left my gear on the unit, and left the fire station bound for vacation at the beach. I was to return to duty in a week and a half, but as it turns out that was not meant to be.

The second day at the beach, I began to feel as if I had to pull myself up the stairs in the condo we had rented. I worked myself up to being able to mention my concerns to Ed, but as he could not see me having any problems, he blew me off.

The next morning I went out to get donuts from The Fractured Prune.
(This little aside is not MS related, but I must say that some things just restore your faith on the kindness of strangers, and this trip was one of them. When I got to the store, I went in, got my free sample, YUM, and picked out my dozen donuts. Only then did I notice the cash only sign. Not only did I not have any cash on me, but I also hadn’t brought my cell phone to call Ed and tell him to bring me cash. As I told the store keeper that I would have to come back, she told me to just take them and come back and pay her later. Who does that in today’s day and age? I thanked her profusely and made sure to come back as soon as we could. I hope this aside wasn’t to long for you, but I think we all need a feel good story every now and then.)
Once I got back to our building and was on my way back up the elevator, I suddenly felt an urgent need to pee. Funny, I hadn’t felt like I needed to go to the bathroom a minute ago. Well I started to do the well known “PeePee dance,” but it was not to be. I opened the condo door, threw the donuts on the table, opened the bathroom door, and I lost it. Somehow I managed to escape without anyone noticing what happened, but I was starting to get scared. I sneaked off to the drug store and bought some Depends, not something I ever thought I would be doing at age 34, and refused to go anywhere that would leave me out of sight of a bathroom. This sudden urgency was not a one time thing.

Meanwhile, I started to feel like I was limping and dragging my right foot, but I was the only one who could tell. It just kept getting worse, and two days later, I told Ed that we needed to find internet access so I could contact my neurologist. Sitting in a local McDonalds, I called the neurologist’s secretary. She told me that there was nothing they could do for me there, and that I would have to wait about FOUR MONTHS for an appointment. Since I had not been into the office in four years, they were planning to treat me as a new patient, essentially penalizing me for not having relapses. After arguing with her for a while, she told me to call her when we got back in the area.

I then told Ed that I should call work and tell them I wouldn’t be in for my next shift. He looked up in complete surprise and said “Is it that bad”. I said “Yes it’s that bad! Why do you think I’m doing all this?”. He truly had no clue what was really going on. I guess that’s part of the unfairness of MS, huh? It’s a silent disease that only the sufferer can hear or truly know.

The next day while shopping, my walking got bad enough that I said I was done. My family could finally see the limp, and I know longer felt safe driving a car. I, who would never go to the ER unless I was the delivering paramedic, or I had an open, compound, displaced fracture of the wrist without a palpable pulse, decided it was time to go to an ER. We found the closest hospital, and off we went. The ER was almost empty, so we were seen fairly quickly. In triage, I explained my symptoms and history, and also mentioned that I might be pregnant since we had been trying. They moved me to a room and started giving me a dose of steroids. Then the doctor returned to tell me that indeed I was pregnant. What should have been some of the happiest words I could have heard were about to turn my life into a nightmare. That’s a story for next time.

May You …
by Judy of Peace Be With You

Have light shine away
the darkness of your valley
so you can reach home.

Meet along the way
strangers who treat you kindly
and with a full smile.

Feel deep in your heart
the warmth of those beside you
who also love you.

This concludes the 57th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 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, March 23, 2010.
Thank you.
Comments for this post.