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, June 21, 2012

Carnival of MS Bloggers #117

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

Disney World, Jack Osbourne, a Big of Luck, 
and Doctors Beyond Reproach?

Relenting and Renting
by Laura at Inside MyStory

Never do I want to be constrained to a wheelchair.  Yes, I know, neither do you.  None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine.  I took a trial run at it last week and came away with a renewed appreciation of being ambulatory.  It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family.  The thinking was being late in May, the weather would still be reasonable.  So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.

Heat sensitivity  is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs.  Keep me in that  type of  stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait  – step, lean,  drag, shuffle.  Repeat.   The hotter I am, the scarier the MonSter in me looks.

We planned on five days in the assorted parks and thought we had developed a reasonable game plan.  However we didn’t take into account the unusual early season crowds and did I happen to mention the heat?  The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on.  The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented.  A mere $12 a day and anyone can rent a  wheelchair for getting around the parks.  There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.

Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb.  My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing.  The height of the chair handles appear to be made for people who are less than 70 inches in stature.  My family is tall, and each one of them had to stoop slightly to push the handles.

I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own ass  around in a wheelchair, and I learned that is no longer a joke;  I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever.   But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing.  It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own.  I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too,  too,  too whatever.  This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.

People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty.  In a large, sun baked crowd, it is even worse.  I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid.  If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck  and especially the belt line?

It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park and she was not so excited with many of the rides we did manage to do.  But we made the best of it – we had our laughs, danced a bit to the music, and made our own fun and I appreciated the alone time with her. even though we were surrounded by thousands of other people.   Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences.  Being in a chair, albeit voluntarily and for a few short days, gave me  new perspective and renewed motivation to not relent to my MS.

Jack Osbourne Has MS
by the MS Blogosphere

Did you read the news or watch the TV interviews discussing the recent MS diagnosis of Jack Osbourne, son of Sharon and Ozzy Osbourne? More than 100 articles have been written and shared on websites since the public announcement was release the past Sunday evening.  The MS blogosphere has also discussed the news.  Here is a round-up of interesting posts:

by Judy at Peace Be With You


A good attitude,
success may depend on it.
So is being real.

I am no fool, see.
I know crap can just happen,
good person or not.

One can only make
the best of what life offers
and hope luck shows up.

by Thomas of BiPolar, MS, and still as handsome as ever

OK, before I begin, take a look at this piece of information here. That's fine, I'll wait. HmmmmHmmmhmmmm. Oh, good. Now in the spirit of sharing, I'd like you to know that that guy is my psychiatrist. Or was. Or still might be. I'm not sure.

First, I freely admit that everyone is presumed innocent before proven guilty. However, I always did wonder why there was a very large amount of turnover in the office. Last few years have been tough for jobs, I am aware, so I did wonder why so many young ladies were in and out of the place, unless incompetence reigned. But basically I paid my co-pay, sat in the chair, filled out the forms, and met with either the Doctor, or one of his associates. Before the associates all disappeared.

Aside from possibly having a serial killer employed, and that's the reason they had to move to their new place because there were no spots left for the bodies to be buried, it did cause one to ponder. I see a lot of physicians because of my dual diagnosis (everyone needs a hobby) and it's more than likely that at each visit the same face would greet me and discharge me. Sometimes the face was attached to the same head. There was consistency.

But not at this psychiatrist's office.

Anyway, moving on, you may have noticed in the article that this particular doctor was called on the professional carpet for having "prescribed excessive levels of medication, failed to properly monitor patients and failed to maintain accurate records." These were the alleged charges.

(Read more: http://www.timesunion.com/local/article/Psychiatrist-faces-sex-counts-3628274.php)

Now, this Doctor and I have had no personal problems, as far as I can tell, in that we worked well on trying various medications to calm the bipolar, and adjust to the new challenges of brain lesions from MS. Working also with his associates, we had a good rapport, and the improvement could be visibly seen. And for those who might have looked, this is where the 5 Keys to Mental Health came from (and No. 5 is on its way). If something needed to be changed, it was changed immediately, or if something needed to be added, it was. And I have benefited and am grateful to the practice.

But still....should I go back there? Should I recommend the practice to others?

Everyone lives with their own delusions, even well trained doctors. Within each person is a golden nugget, a true clean soul that shines. It just gets covered with personal crap, and the jewel can not get its light through the mud and gunk of life. The person needs to clean that jewel themselves. And it takes time. This doctor may have some time soon.

Last night I started looking in my health insurance guidebook for another psychiatrist, one that was, literally, closer to home. I've been fortunate that I've had the same doctors pretty much for years, and haven't had to experience the constant shuffling many patients do. In fact, my regular physician retired the same day I did. But as far as I know, none of these folks had any of the issues that are being doled out to my psychiatrist.

So how to handle this? Consider what would you do if you found out a professional individual who helps you balance your disorder/illness/life has not exactly been a shining light to others? Forgive and continue? Forgive and move on? or just move on? I am fortunate that I can.


This concludes the 117th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 5, 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, July 3, 2012.

Thank you.

Thursday, June 7, 2012

Carnival of MS Bloggers #116

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


Optimism, Breathing in Sync, and Steroids

from Lisa Emrich of Brass and Ivory

Did you hear of the Everyday Matters program co-sponsored by the National MS Society and Sanofi-Genzyme (developers of Teriflunomide and Alemtuzumab)?  If not, please read this post in its entirety at HealthCentral.

Five individuals living with MS will be chosen to work with the Everyday Matters team to map out strategies for achieving a desired goal or addressing a specific challenge in their everyday life through positive psychology.  The lucky five with work with Shawn Achor, renowned psychology expert and former Harvard University lecturer, Kristen Adams, a mom and Emmy‐award winning producer living with MS, and Michelle Clos, a life coach certified by the International Coach Federation who is also living with MS.

I had the pleasure of speaking with Kristen Adams earlier this week about the program, about positive thinking, and about living with MS.  As a professional producer, Kristen’s expertise is in video and telling stories.  She will be conducting the initial interviews of the five participants living with MS to introduce them to the MS community online.  She will keep in touch with them over the course of the program and visit them near the end to document how each has achieved a desired goal or worked through a particular challenge. 

After attending a weekend workshop with Shawn, Kristen, and Michelle in Denver, Colorado from July 13-15, 2012, the five participants will receive six months of personal coaching from Michelle. The participants will also be keeping a video diary throughout the program to share their experience.  In November, the entire group will be brought together again.

Kristen shares that the most important part of the project is for people in the MS community to VOTE on the topics.  What issues are most important to you?  What challenges would you like to see tackled through the program?  The five participants will be chosen, in part, by how their own challenge or goal represent the interests of the MS community. 

During our interview, Kristen was very excited as she described how several of the ideas Shawn teaches are reminiscent of homespun wisdom - “If you don’t like your situation, change your attitude.”  You have the power to shape your circumstances.  “My circumstances necessarily aren’t changing but my attitude about my circumstances can,” says Kristen.  “I have the power to change my attitude about my situation.”  Changing your outlook can help you feel differently about unchanging circumstances.  

Shawn and the “Tetris Effect.”

Although Kristen admits to not playing Tetris as a youngster, she shared one of Shawn’s analogies with me.  I really liked it so I’m sharing it with you.

The game Tetris teaches you to scan for patterns.  The better you get at seeing the patterns, the better you get at playing the game.  Kristen shares that it has been discovered that “people who played a lot of Tetris, even when they walked away from the game, would start to see those patterns in life all around them.  So [Shawn] says, you can teach your brain how to scan for the positive in life.” 

Here’s a really simple exercise to try.  At the same time each day, think about three positive things that happened that day.  Kristen does this with her sons at the dinner table.  This “trains your brain to scan your environment for positive things,” Kristen says.  This is one way to rewire your brain for optimism.

If you are interested in participating in the Everyday Matters program, sponsored by Genzyme and the National MS Society, go to everydayMSmatters.org to learn more.  HURRY!  The deadline is next Wednesday, June 13, 2012.

by stephen of one life: livin' the dream

i took a tai chi class many years ago, in which the teacher admonished us to remember to keep breathing, or, to be more exact, to remember not to stop breathing. when i was in high school, during my very brief stint in track, i figured out that the best way to pace myself was to coordinate my in-and-out breaths to my foot falls. i found i was able to run further if i could maintain this rhythm. years later, when i used to walk a few miles during my lunch break every day, i used the same technique, matching my breathing to my foot steps. it was a meditative process, even overlaying a mantra over my breathing.

i have in recent years had to give up both running and walking, but i have long been an on again, off again meditator, and the same mantra rhythm has stayed with me. i spent some time with a physical therapist who reminded me not to hold my breath when working with hand weights or doing other strenuous exercises. seems like pretty common sense advice, but i was, as probably many of us do, holding my breath as i strained. so much easier when the proper breathing is maintained.

oddly enough, i just recently discovered that, as i dragged myself down the hall with my walker, i was, again, holding my breath, and, how much easier it was when i timed my “steps” with my breathing. also made me feel less likely to fall. amazing how the simplest things can make such a huge difference.

by Annette of How Did That Happen?

So after spending almost 3 weeks on solumedrol to fix my optic neuritis, I started a 3 month round because my leg went on strike - for 3 months.

Different people have different things to say about their steroid experience and I would love it if I could report a 3 month stint of boundless energy - happily scrubbing the kitchen floor while whipping up some creme brulee at 3 in the morning.  Sadly, I have never fallen into that bucket.  A list may be a more efficient vessel for my steroidal experience.
  • Metal Mouth - as soon as the IV steroids make their way into my impossibly small veins, my mouth fills with the taste of metal.  It feels like I’m sucking on used tractor parts.  The only cure - peppermint altoids and Coke - together.  Well there is another cure - eating anything with a taste stronger than that of a tractor.  I went with the peppermint altoids and Coke during the infusions, but when I left, I stopped at every drive-thru between the doctor’s office and my house.  I bought and ate everything that wasn’t tied down or secured really well.  There were times I could have happily chewed off my own arm if there was no fried chicken or Lays potato chips within my reach.  (I’m a vegetarian, btw.)
  • Weight gain - obviously due to the fried chicken, chips and pounds of key lime cheesecake I ate daily during those months, I gained 60 pounds.  This was the toughest part for me.  I had always been around 100 lbs and the 10 baby pounds I had gained were driving me crazy.  After the 3 months were up I tipped the scales at 170.  The fact that Rochester didn’t have an Olympic heavy-weight wrestling team was inconsequential.  I was headed for the big time.  Don’t get me wrong - 170 is perfect for some people - I get that.  My ridiculous standards are meant only for me.  The doctor’s advice?.. Steroid weight can be a bear to come off.  Super - thanks for that. So I spent the next 6 months eating gummy bears, crying to the Cosmos.. HDTH???  (Could it be that the answers to my HDTH questions are smacking me square in the face, but my delusional God complex, ‘perfect every day in every way’, and ‘off the charts D-personality’ are all plotting to conceal the answers that probably would have accelerated this drawn out process significantly?  Another redundant question.  Of course not.)
  • Potty Mouth - This was really something.  I’m proud to be a Canadian with unflinching standards in the Emily Post manners department.  I understand that can be as annoying as dropping f-bombs to some people, but again - only my standards matter in this world - am I right?  (That was a redundant question.  Please do not answer it.  Thank you.)  The vile eruptions that poured out of my mouth while on steroids would shock a back-woods hooker on crack.  And no one was spared.  Michael got the brunt of it, but anyone that mistakenly wandered across my path got blasted.  My mother-in-law finally lost it one day and said, “Watch your God-damned mouth - you sound like a trucker”.  I’m surprised she survived my ensuing wrath.  I remember a drive-thru experience one day when I checked my order while still at the window.  There were only 3 10-packs of chicken nuggets.  I had ordered 4.  I began swearing at the skinny, acne faced boy behind the window, but he ran away.  The GAUL!  I actually parked the car and walked into Wendy’s so I could berate more people more effectively.  This was, of course, after I ate the 30 chicken nuggets.  The manager ended up giving me 3 free 10-packs as long as I left the building immediately.  Score.

This concludes the 116th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 21, 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, June 19, 2012.

Thank you.

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