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, September 23, 2010

Carnival of MS Bloggers #72

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

The Power of Words and Inner Spirit

by Diana Neutze 
It must be the most consummate
burglar of them all.
At the beginning, the thefts were basic;
walking, dressing myself,
turning over in bed.
But later, it removed my ability
to feed myself, to sing in a choir
and play the piano.
It seems the thieving is systematic;
when I spasm, I either go rigid
like a corpse or curl into a fetal ball;
my very beginning
and my very end are intact;
it’s the life in between
that is being dismantled.

Some weeks ago I had friends around
to honour a young man’s death.
Shubert’s “Winterreise” was sung.
The room was full of beauty and pain;
the human need to give comfort
was expressed by my friends
holding one another in close embrace.

Entrenched in my wheelchair,
like an armadillo,
I sat watching.
I could neither give
nor receive comfort.
The M.S had stolen
my human connectedness.
I was left with only words,
but words were not appropriate.
It was a double grieving
and brought with it the fear
that one day, even my words
might be taken away.

from Pandora's Perspective
I trip

down a corridor darkly

wall-walking the length
and breadth and height
my fingers reach
(when feeling out of sight)
afraid for tomorrow
but searching for
the rest of my life

I may stumble
I may fall
but never will I stop
-- Pandora Deichert

by Laura of Shine the Divine

truth be told
I get used to
going out
joining in
feeling part of
life beyond the boundaries
of my house.
I get used to it.

got used to it
this summer
as we celebrated my daughter's
bat mitzvah
and traveled to be
with family
and friends
so much joy.

but here I am
once again
peering through windows
foggy from a family's morning
of showers
as they prepare
and leave
for a day at school and work.

and truth be told
my legs are too tired
too weak this morning
to take me even out into the yard
to photograph a single leaf.

so I watch the sun bathing
the trees in gold
from my bed
shuffling downstairs with care
to discover
another pleasing view
through the kitchen window.


truth be told
I get used to
going out
joining in
feeling part of
life beyond the boundaries
of my house.
I get used to it.

got used to it.

but like the filtered sun-glow
slowly shifting her spot light
from one stand of trees to another
I cannot expect a body, my body
besieged by an completely unpredictable disease
to remain the same from day to day
moment to moment
my physical health
like, everyone's really
is in a constant state of flux
my husband is busy
my children are busy
I am here at home
with the dog
the cats
the blessed internet
the season has changed
and with it my ability
to venture out more
often.

truth be told
I pretend a lot.
at least it feels that way
when I am busy shooting emails to and fro
scheduling appointments and activities
for my family (a few for me)
filling up our calendar
filling in our story
I pretend that I will be able to attend
everything
I imagine that I will go
that I will feel strong
on that day
I'll be there too
with everyone else
and truth be told
sometimes I will
sometimes

but truth be told
the calendar details
a story that I watch unfold
most often from my bedroom
I have not driven a car in nearly two months
the last *pseudo-exacerbation
left behind myoclonis in my legs
there are days when it does not
happen
there are days when every time I attempt to
stand and walk
my legs do a wild dance
all their own
but will not allow me to move forward
without assistance
will not support me
so I must slowly edge along a counter top
table
chairs
wall
or simply wait
until the shaking
stops.
I cannot leave the house unless
someone comes to get me,
takes me
somewhere
else.

yesterday was spent sending
emails to several people who do not know
my story
they have no idea how exhausting it can be
for me to organize and arrange
schedule and check in with everyone
on the list
and that's as it should be
the not knowing
how could they
know?
they are strangers

and I imagine those who do know
I have MS
simply don't realize
don't understand
that even though I "looked great"
the last time they saw me
dressed well and made-up
or
because I am still fairly
efficient
able to get things done
most days
with my computer
and healthy mind
they don't know
that I am pretending
acting as if
I can do
everything
as though I have the energy
of a typical woman my age
with time on my hands
not working outside my home
time
on
my
hands
how could they know?
I do my best not to make it obvious
I do it for them
for my family
for myself
because
because I still want to be a part of
not apart from
life beyond the boundaries
of my house.

sometimes I create the foggy window.
sometimes I discover clarity.


but there is sunlight
on my hands
across my chest
as I lay in bed
resting
a rest that
cannot restore
the physical energy
that seems to flow right out my scarred
nerves
into my incredibly
active
mind

truth be told
my mind and my computer
help me to
go out
join in
feel part of
life beyond the boundaries
of my house.
I'm getting used to it.

truth be told
last evening Gordon drove me
to a tai chi class
I sat through it
but moved
in fact it felt as though
I were dancing
as my arms reached out
soaring through space
flying
free
though my hips and legs
remained bound to a
chair

there were emotions like
annoyance each time the teacher
instructed us to slow down
my body only does slow
then gratitude
because slow is easy for me
an MS gift that brings awareness
to my movements
sadness and jealousy as I watched
the other women
walking across the floor with ease
but those feelings were fleeting
quickly turning to admiration
and joy
the energy in the room
softening
with the grace of their movements
and my own

and tomorrow night my friend Viv
will come and stay over
she will take me to book-group
I'll be with women friends
I'll
listen
talk
join in
be part of
life beyond the boundaries
of my house.
20 months of practicing
home bound/gnome mound
living
I'm getting used to it.

another secret
to reveal
another
truth to be told
as much as I want
to go and do and be a part
of life beyond these walls
I am often hesitant to
leave the safety
of our house
to be seen
moving awkwardly
to be heard
on days when
the lilt of my
MS acquired
foreign accent
is not pleasantly exotic
because my mouth and tongue
are not receiving the information they need from my
brain
to work together in a coordinated
fashion
and no one
not even
Gordon
can understand my speech
on those days.

and the consequences of going
and doing
are a day or so of "losing ground"
as I float in my bed
exhausted from an excursion
like today.

this is not a page filled with
"woe is me" words,
please don't mistake it as such
this is simply what is.
a sharing of my experience
as I reflect upon my life
this morning
my goodness it's afternoon already.
well
my truth for today
with a small "t".
if my circumstances were different
I might not have time to write
to rest and see my story clearly
to listen to the stirrings of my
heart
or
be
tender
with it.

this is what is.
this is where I'm supposed to be in my life
right now
on this
day.

I trust that this is
true.

I am grateful for the quiet in the house
for this time of reflection
for the range of emotions
rising up and settling back down
like my belly
my chest
as I breathe.

what a gift it is to feel so much, to be able think and shift a view point, view the earth's beauty through my windows and capture a glimpse of it in photographs that can be shared instantly across the world via the internet.

truth be told
I feel blessed.

*I have 2 neurologists, both wonderful. I visited the first one in August after 48 hours of an increase in my symptoms and my wonky leg thing started. She saw no changes in the mri and told me it was just a "pseudo exacerbation". Don't worry, mri looks great. The other doctor who saw me five weeks after the first one and was privy to witnessing myoclonis in action when I stood up, said it was more likely an actual "exacerbation" that didn't show up on the mri because it occurred in old scars, but again not significant enough to change treatment plans at this point, because (thank God) the mri results look unchanged from 6 months ago. Tysabri seems to be working to slow the progression of disease.

This concludes the 72nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 7, 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 5, 2010.

Thank you.

Comments for this post.

Thursday, September 9, 2010

Carnival of MS Bloggers #71

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

Take Time in Life with or without MS

by Laura of Shine the Divine

Heart shaped stones we found walking along the Ashtabula River.

SLOW DOWN! scream my neurons. And what choice do my limbs, my voice really have? None. My mind has a choice to make however; be miserable and angry because this is NOT how I want my body to be or sit, listen, breathe, observe, appreciate, accept the gift of this moment just as it is.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We are back from our last bit of traveling for the summer. In my opinion, Northeast Ohio is the epitome of slow living.
Rosie driving great-grandpa's 'ol Case tractor with Gordon's guidance
Lily Pond @ my brother-in-law's house
Gazing at the Ashtabula river from one of many covered bridges in Ashtabula County, OH

Friendly clipeared/hornless goat at the County Fair, Jefferson, OH.
So it was sort of ok that my MS decided to kick it up a notch and say "hello, ummm, you know you still have a chronic illness, right?" before we left last week and on and off throughout our visit.
On our way home we stopped at Niagara Falls and enjoyed the majesty of the rushing water.
Gazing at the falls is a timeless experience.

Yet another reminder that sometimes it's best to slow down and witness the beauty we miss when we are rushing.

Driving home from Ohio through New York and Massachusetts gave me plenty of time to appreciate the country side and the skies (it's a 12 hour trip, we brake up into two days.)


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Of course I wish that now that we are home again my MS symptoms would kindly knock it off already!

And with this thought I must gently remind myself about my choices: be miserable and angry because this is NOT how I want my body to be or sit, listen, breathe, observe, appreciate, accept the gift of this moment just as it is.

Sitting peacefully seems like a pretty good idea. I'm feeling deep gratitude as I write this, because truth be told, I am still getting out a bit with a commitment to rest in between. (Haircut yesterday and shiva call for a friend.) Mostly I tell people I'm feeling well when they ask, because who wants to hear "Well actually I feel like crap, but here I am anyway:)" and honestly, overall, I DO feel well much of the time...So I don't think this is another exacerbation in progress, or maybe just really minor one? Because despite the difficulty with speech and walking on and off (can't access words, or make my mouth form them and release them, plus the accent is back and shaky legs that don't want to support me or lift up and move and then just as mysteriously my neurons "come back online" again) Most likely just MS being MS with surprising ups and downs. I know my doctor says this is NOT supposed to happen on Tysabri, except for heat or exertion creating pseudo exacerbations, but I dunno, I've been doing my best to stay cool in our air conditioned bedroom and except for one day when I walked 2 miles a few weeks ago (that was amazing!), I don't think I'm exerting myself. Unless of course hanging out with my teenage daughters, visiting relatives, being pushed in my wheelchair when it's too hot to walk and sitting in a car for hours on end counts as exertion? Maybe. I'm trying hard to figure out the balance of rest and moving through my life. So we'll see. I have an MRI scheduled for Friday evening. (Needed one anyway because of being on Tysabri, so the timing is good).

Thank you everyone for your thoughtful comments, prayers and well wishes. Although I've been horrid about responding, know that I read everything you write and feel immense gratitude for your support.

gentle steps,
Laura

by Maryann

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!


A new website/blog for the MS community.  "These are stories by MS patients for others with MS, their caregivers, friends, and family. This blog will tell the stories of what it's like to have MS--whether they are happy, sad, courageous, or ordinary stories. Become a participant and join in the story telling by contacting Ann at ann67p@gmail.com.
 
This concludes the 71st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 23, 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, September 21, 2010.

Thank you.

Comments for this post.

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