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 24, 2011

Carnival of MS Bloggers #84

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

Kindness of Strangers, Old Friends, and New Doctors

by Rodney at CCSVI Locator

I love Mardi Gras.  I have gone to the parades for all of my life.  I have been blessed to ride in the parades.  The riders throw beads, cups, stuffed animals, doubloons and other trinkets to the crowd.  The entire event is a love affair of the city.

The parades go on for about 10 consecutive days.  Last year my wife went to see her mother in Alabama, and our daughter and I went to a neighborhood parade that got expanded to three consecutive parades because of rain on previous days.

I parked five blocks away.   Even though I had MS, five blocks was not that big of a challenge.  I had some stumbling moments in the past, but no major problems.

I was fooling myself.  I took the cane and failed to use it as we walked down the very poorly maintained streets of New Orleans.

We made it to the parade route and all was great. The people were nice.  They gave my daughter and me drinks and food because the hour-long event went to three hours.  I sat down on the curb and got along with everyone.  My daughter made fast friends and everyone had a great time.

We had caught a garbage bag of stuff at the parades.  Our daughter was so pleased with her catches she could fly.  I know this neighborhood.  I may not know the individuals, but I know where I am.

Realize that New Orleans was coasting on an incredible high.  The New Orleans Saints football team had just won the Super Bowl and the city was full of love.

We walked and I stumbled.  I got better set and walked on towards the car.  About another half block and I was down on the sidewalk.  I started to crawl towards a Dodge pickup truck.  I would crawl, regain energy and get to my car.

I could not have been prouder of our 10-year-old daughter.  She was a trooper and maintained calm in a horrific situation of her dad falling on the ground.

Then New Orleans came up big.  I was crawling towards the truck, and someone got someone else and suddenly this young lady, a nursing student, pulled up to take the two of us to our car.

Total strangers stepped up and brought us back to the car.

I am eternally thankful to those helped me in a moment of extreme need.

Shortly, I filed for disability and began looking for new solutions beyond Tysabri for MS.

I was on Tysabri at the time, and my condition had deteriorated to a new low.

Within weeks, I began to work towards getting CCSVI.

So through tragedy, good turns of life can be presented.

The first good turn was when a place I loved gave me more love than I will ever know.

I have through my life tried to be the giver of love to those in need, and just the memory makes me cry.

My little girl and I drove to a restaurant, had dinner and drove home.

The next challenge is to see another parade.  I will go again.  Mardi Gras is something I want to experience again.  This year I will probably not go to a parade.  But next year I want to attend parades with the kids.

My life has been filled with goals.  Marriage.  Children.  Home.

My next goal of going to a parade is somewhat selfish, but I want to just stand before a parade and feel the love.

And I will do it with the help of my family.

by Tina of MS Keeps Life Interesting

Ah yes...class reunion time!

Preparation meant:

* Try on approximately 16 different outfits to see which one makes me look less spherical.
* Find which jeans elongate my 5'1" stature.
* Find which shoes have the largest heel I can walk in without falling, again, to give the illusion that I've not lost an abnormal amount of height since graduation.
* Accessorize in a manner that says, "I still got it". Whatever "it" is. Or was.

I was a What Not To Wear episode. In summary, I felt like I shouldn't wear any of it. But the reality is...I've known these folks since about 1977. I'm not fooling anyone with a crafty pair of jeans or dazzling top. I'm not 100lbs. I'm not 5'7". Let the secret be out.

So there I was, entering the establishment and immediately checking in at the...ladies room. When I'm anxious, my bladder shrinks to the size of a pea. No pun intended. Upon exit, I was scanning the crowd for anyone who looked like someone I used to know...but in a "20 years later" fashion. And wondering if, when I approached them with a warm hug, my head/neck tremors would act up and they'd look at me sideways. Or that I'd lose my balance a bit, as I do when I hug someone...which results in a slightly longer-than-appropriate hug. That can be very awkward for both parties. Thankfully, before I had much more time to consider the possible scenarios, I spotted one classmate...and another...and look there's another! Yaaaaay! My friends! Oh how I'd missed them! They seemed to know me upon first glance and vice versa. Whew. That was easy...

Side note: I love that most of the guys are bald. My husband didn't feel so out of place. Seriously though, how could they not be with the abundance of hair gel and mousse they wore circa 1988-1991? If they only knew the price of having that impressive, spikey hair...oh who are we kidding, ladies. They wouldn't have changed a thing!

So when you're used to drinking water and you decide to enjoy 2 Cokes in succession, the bladder isn't pleased. It identifies the black, caustic liquid as a foreign substance and wishes to rid itself of the offender as quickly as possible. After 4 bathroom trips in the first hour, I switched to water...which resulted in another 3 trips, though better apportioned.

Finding my way to the restroom, maneuvering through the large crowd of folks...many of them swaying...became quite an obstacle. I had to navigate a series of steps, as well. They were narrow, which added an extra little spice to the venture. All I could envision was taking a spill similar to the one I had about 6 years ago at a child's birthday party...where I fell down narrow steps, hit the back of my head, and knocked myself unconscious. It ain't a party 'til someone wants to call an ambulance for your mommy, right kids! RIGHT!

But I made it...all 7 times. Without falling, without so much as tripping. Sure, I bumped into a few folks, but they didn't seem to mind...probably didn't even notice. And then it happened out of nowhere. The lights went dim, the colored disco ball spun, and the music began. Oh no. I never, ever used to turn down an opportunity to dance!

I immediately took a step toward the dance floor, but stopped myself. I decided it was a "No" with a capital N. I simply couldn't dance. I'd get overheated, my eye would blank out, my legs would shake, and I'd stagger out. But wait. These are the people I've known since 1977. And these are my favorite songs. MS...may I have this dance? Just this once?

It Takes Two! Apache - Jump On It...complete with applicable "cowboy with lasso" dance! Lady Gaga for good measure! Perfect! As predicted, I lost the majority of my vision in the left eye, my legs began to shake, and I knew it was time to take my "dance partner" home to recuperate. But I'll tell you, my head/neck tremors coincided perfectly with "Bad Romance". It's not the easiest song to dance to, so I just sort of moved my body a bit and let the tremors do the rest. My girlfriends were clapping with approval, so I must've been doing something right. Come to think of it, maybe that truly is the correct way to dance to a Gaga song? Hey thanks, ms!

What was I worried about, you know? I was able to be there and have a blast! I got to dance, which is something I've always loved to do and used to be fairly good at (though not anymore, but it's still fun)! And I was able to reconnect with some wonderful folks that I've missed dearly over the years. I think that's worth some leg weakness, eye blurriness, and a little peeing for good measure. That's what panty liners are for! Did I just say that out loud? Wow. I really AM just like my grandmother...

But behind every wobbly woman is a strong man to shove her into the truck. Many thanks to my dear husband for being that strong man. In sickness and in health...in wobblies and in strength...in temporary blindness and in clarity...he loves me through all seasons. And I love him right back :-)))

by Maryann of MS and ME

My neurologist here in Salem referred me to an MS specialist in Charlottesville. As I have never been to one, I was intrigued. We drove the 2.5 hour drive to C and I checked in. After getting weighed (ouch) and BP taken, we were shown to an exam room. I wanted Arnie to be there to help me with questions and to help remember what the doctor said. Of course, Monty was with me also.

After a few minutes, Dr. Scagnatti entered the room and shook our hands. I like him a lot. He was with us for 50 minutes. First he did a complete MS history, then a thorough neuro exam. He then asked if I would be able to walk in the hallway without Monty and without my rollator. I told him I could do that as long as I could walk close enough to the wall to catch my balance.

I was asked to walk normally--for me--while he watched. He then had me stand and told me that he was going to give me a push (or a pull), I can't remember which. He said try not to take more than two steps backwards. He did it twice, and I took six steps back. I forgot to ask what that was for.

He then sat and talked to us. He asked if I agreed to be in the Touch program, which is a clinical trial for people taking Tysabri. The check for the virus that causes PML, the brain infection for which there is no cure. I signed the papers. He then said that he wants me to have an MRI scan of the brain, cervical spine, and thoracic spine to check for new lesions. That is scheduled April 1, then I have an appointment to see him the second week of April. He also said that during that visit, I will be assessed by the physical therapy group there.

Since Arnie goes to Charlottesville to his oncologist, we will be making the trip now more than once a month. That's okay, it's just 2.25 hours from home.

I'm glad Dr. Scagnelli wants to see me back again at regular intervals. I expected for him to say to come back in six months or so. I really really like him, and so does Arnie. That gives me peace.

by Tanya Asbreuk

Before I was diagnosed with MS, I had no idea what was going on with my body. In my left eye, my colour vision was fading and I was light sensitive to the point of constant nausea. I actually went out and bought an eyepatch – and then drew a skull and crossbones on it with a white-out pen. Aaarrr Matie! As long as my eyes were open I had a headache so bad it bought tears to my eyes, and I felt this bizarre pressure, like there was an ice pick tearing into the back of my eye from inside my head. I found out later this is called “Optic Neuritis.” On top of that, I had tremors in both arms and hands – worst in my left. This was happening as I was finishing up my manual drafting class at college, which is all about drawing very neat and specific lines with a pencil and ruler. I couldn’t even keep the ruler still with my left hand. I also had a strange sort of spasticity in my right leg – I’d be walking along, then suddenly my leg would kick out randomly, and I was never sure if it was going to end up where I expected it to be. This is called “Ataxia. ” I was using public transit and walking a lot at the time (and still do). I also started slurring my words slightly, and had trouble concentrating on tasks that were usually very simple for me – called “Cognitive Impairment” or "Cognitive Dysfunction."

It was like all these things that I had taken for granted about my body were tired of being ignored, and were all having temper tantrums at once. It was at that point that I started looking at my body as separate from me, and I spent a lot of time asking it what the **** it was doing. My Neurologist told me I was actually having three separate attacks that just happened to overlap. It didn’t make me feel any better about it. Then came the corticosteroids… and I lost some serious time that week. The funny thing about taking 1200mg of steroids in 3 days isn’t what happens during those days – it’s what happens afterwards, as your body is flushing them out. My class apparently went on a field trip the week after my steroid binge, and I went with them. I participated, I asked questions (maybe not as intelligently as normal) and… I have no memory of that field trip. I thought I had dreamed it, and I had to ask my Instructor if I had actually been on a roof that day. I’m just glad there were people around to keep an eye on me! My nurses have since told me that is not a typical response to the steroid, even at that dosage. I’m special, I guess. I sure as heck didn’t imagine it.

I always wondered if there had been warning signs in my past – something that I didn’t know I was supposed to take seriously. After my diagnosis I started researching everything I could think of – early onset symptoms of multiple sclerosis, MS diagnosis, MS causes, disease progression, MS symptoms in women… and came out with a lot more questions than answers. I found out that MS occurs about twice as often in women than men, tends to hit my age group more than others (25 to 45 years,) tends to occur more often in Caucasians then other groups, tends to happen more often to people who live in temperate climates, in developed first-world nations… in other words I fit the profile, but no one seemed to know anything for sure. There is no proven genetic link, but it tends to happen about 20% more often in families having a history of MS. Mine doesn’t.

This concludes the 84th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 7, 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, April 5, 2011.

Thank you.

Comments for this post.

Thursday, March 10, 2011

Carnival of MS Bloggers #83

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

What Does MS Equal To You?

By Mary K. Mennenga

Guilt as an emotion is what
People use to get what they want
The only way it's able to work is if you buy into it
Honestly only you can make yourself feel guilty
Of course people will use words to reinforce your interpretation
Of what they've said to help you in feeling guilty
It's more about your interpretation of what was said
Take great care whenever buying into guilt
Because if guilt is the reason behind your actions
Your actions will have little meaning
Because it's become something you have to do
Instead of what you want to do

By Lisa Emrich at Brass and Ivory

MS = a twisted roller coaster, spiraling and without brakes.

I can’t recall the last “real” roller coaster I rode.  Honestly, I’m trying to rack my brain.  Was it during a visit to Disney World in 1985?  Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)

During one ride, the anticipation and excitement about being strapped into a seat and allowing your body to be whirled through the air is intoxicating.  During the other ride, eyes are closed, feet are trying to push the imaginary brake pedal in the passenger seat, and the adrenaline rush is exhausting rather than exhilarating.  (Can you tell I have vivid memories of a car ride which scared the living daylights outta me?)

Living with multiple sclerosis is a bit like a roller coaster ride.  Many different and ever changing roller coaster rides, in fact.

When first diagnosed, I think that the roller coaster is ridden in total darkness.  You can’t see what obstacles, loops, twists, or drops are to come.  The fear of the unknown can be overwhelming and you just want someone to turn the lights on.

When living with MS for a little time, you begin to see patterns which repeat.  You get to know your own roller coaster track.  If you have relapsing-remitting MS, this analogy may sound very familiar.  Perhaps each relapse is like a separate ride which eventually comes back to rest.  However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”

Dealing with life with MS can be an emotional roller coaster as well.  You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance.    Of course, no one has to go through these stages in any organized fashion.  There are no hard and fast rules. 

I have found each reminder that MS is a companion who will not leave sends me out on the roller coaster once more.  It doesn’t matter how many times I’ve ridden the ride, or how well I know that I will never truly fall from the rickety supports, or that I will once again learn how to live with the new post-ride me.  I still get strapped in for a bumpy ride complete with anger and tears, sadness and guilt, and finally resignation to the new normals of life with MS.

A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey.  Your initial coaster may be like the gentle teacups which swirl in circles.  As you learn more about the disease, you may begin to see what types of rides others experience.  Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops.  You know that you might be on that ride also at some point. 

It can be frightening simply knowing what others experience.  Knowing what you might experience.  Knowing what you have experienced and may again (or always).  This knowledge is a type of anticipation which no patient or medical professional wants to burden you with, however “knowledge is power.”  It seems better to know what the possibilities are rather than always riding with your eyes closed.  Right?

No matter what the ride entails.  Know that we do not have to ride alone.  Others have come to the amusement park with us.  Our friends, family, loved ones, caregivers.  And, honestly, we (those who live with MS) do not have exclusive access to the park.  People living with other chronic and acute diseases may be there as well.

In fact, life itself is like a roller coaster, never completely flat nor static.  We each move forward (whether we intend to or not) eventually.  Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us.  Choosing to never go this journey alone.

MS = a journey to destinations known and unknown

MS = a community of travelers who support each other

MS = the reason I am here, right now, reaching out to myself

by Tammy Malkowski from Pick Tammy's Brain
My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.

I could fall at any moment.
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.

My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.

I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.

You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.

I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.

I may need your patience
And your compassion too.
But never your pity
For all I have to do.

I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.

I am making an effort
To be someone who
Is making a difference
In my own life too.

Give me a chance
Be on my side
I am still me
Even with all the drama inside.

My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.

The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.

by Tammy Malkowski (2/25/2011)

from Living! with MS by Denver Refashionista

Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)

I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.

One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.

My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.

Joy is often about valuing what you have, not morning what you have lost or could lose.

This concludes the 83rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 22, 2011.

Thank you.

Comments for this post.

Friday, March 4, 2011

Carnival Delay

Hi folks,

Did you notice?  The Carnival didn't go up yesterday.  Tuesday was extra busy.  Wednesday was normally day.  On Thursday after going and going and going non-stop from 10 am to past 7 pm, I gave myself an extra day to collect the posts.  Thought that I would take time today during an infusion of Rituxan to take care of getting the Carnival posted.

Today has not been a boring day, that's for sure.  And not really in a good way.  But things are going more smoothly now.  After having trouble getting an IV started this morning, me bending my elbow too far and causing the delicate IV we did get started to infiltrate, thus getting a dose of steroids and saline in my arm (not the vein), I was tired.  Silly arm of mine didn't let me know that there was a problem with the IV until I already had a HUGE bulge on my forearm (which was BELOW the IV insertion point).  I think I do know when the tube must have broken through the vein wall as I did feel a 'pinch' at one brief moment while I was adjusting myself in the chair and typing on the computer.

Then a different was brought in to check for veins with a doppler scan (and proceeding to miss three sticks herself, I think), I fainted.  My blood pressure seriously was measuring a systolic (the bigger number) pressure of 40 (I was told much later in the day).  I'm also told that I stayed lucid enough to talk a bit.  I just remember trying to continue to reach through the fog to stay connected with the kind nurses at this new-to-me infusion center.

Then there was talk of admitting me to the hospital so that another team could put an IV in my upper arm (which this outpatient department doesn't do).  But eventually pediatric nurses were called to help get another IV started.  (Yes, I did finally make this suggestion after the nudge of finding someone who might work with small and difficult veins didn't result in a successful IV.)

I honestly lost track of how many attempts to start an IV were as a number of them happened while I was almost blacked-out. I'm sure that it was at least eight.  However, my experience here is still better than the previous infusion location I must say.  The attitude and atmosphere made a huge differnce.  And Yes, the peds nurses (it took two of them working together) got a good IV going.  We were finally back in business.

But since the pre-treatment steroids didn't make it into my veins, I had the same infusion reaction at about one hour into the drip (and we were already going at a planned slow pace with the infusion rate).  We had hoped that my body was still processing the steroids which ended up sub-Q.  More IV benadryl and steroids were given, the drip stopped, and after 30 minutes we were ready to begin the infusion again.

That was several hours ago.  Since we are staying at a slow infusion rate, I still have a couple of hours to go.  But at least the medicine is flowing into my body now without difficulty.

As a result of all this drama, I haven't felt like writing, collecting, or creating any posts or articles (including the Carnival) today.  My apologies....but now you know what's been going on with me today (and this week, see P.S. below).  Thinking of most of the days this week, I've been on the go-go-go much more than usual and I'm exhausted.

Hope things are good with you.  Don't fret, the Carnival will indeed come (sometime).

P.S. I was able to spend a large chunk of time catching up with an old friend who was in town this past Sunday.  I taught as usual on Monday.  Tuesday evening I attended a concert and went out to eat after wards with a small group.  Wednesday was normal busy.  Thursday was gong to be somewhat busy, but became a hugely long 8 hour day away from home.  Today, I arrived at the hospital before 7am; I will probably finish close to 5pm.  Long days indeed.