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

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones

Labels

Showing posts with label Community. Show all posts
Showing posts with label Community. Show all posts

Friday, August 17, 2012

Carnival of MS Bloggers #121

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

Sunday, I had the pleasure of meeting with two MS blogger friends in Denver for breakfast.  Pictured below are Sherry from Word Salads, myself (Lisa) from Brass and Ivory, and Nadja from Living! With MS

Sherry, Lisa, and Nadja.  Breakfast in Denver.  August 2012.
Since beginning Brass and Ivory five years ago in August 2007 and the Carnival of MS Bloggers in January 2008, I have had the distinct privilege of meeting some absolutely wonderful people living with MS. 

Joan, Lisa, and Jen.  Lunch in Delaware.  April 2010.
Diane, Webster, Rob, Lisa, Jen, Gretchen, Jen's Mom.  Coffee in Seattle.  June 2010.
Lisa and Cathy.  MS Cruise to Alaska.  June 2010.
Jen and Lisa.  Weekend in New Jersey.  October 2010.
Lisa Emrich
Lisa speaking at ePatient Connections Conference.  Philadelphia.  September 2010.
Patient Leader Panel at BlogWorld Expo.  Las Vegas.  October 2010.
2010 was a big year for meeting bloggers and speaking at conferences.  Unfortunately, I didn't get pictures of some of the meetings with MSers I attended in 2011.

Lisa, Jen, Cathy, Daria.  Lunch in New Jersey.  August 2011.
Kelly (RA Warrior), Lisa, ePatient Dave.  Philadelphia.  September 2011.
2012 has been very busy - from blogging at the NMSS Public Policy Conference to traveling to Zurich to represent international MS patients. 
Lee and Lisa.  National MS Society Public Policy Conference, Washington, D.C.  March 2012.
International MS Patient Summit: Living and Working with MS.  Zurich, Switzerland.  May 2012.
Jennifer, Lisa, and Ann.  The Walking Gallery.  Washington, D.C.  June 2012.
Michael and Lisa.  Coffee in Washington, D.C.  June 2012.
Thank you so much for opening your homes and hearts throughout the past five years.  I am so grateful to be a part of this MS community and to have so many wonderful MS friends.  I wonder what will be in store for 2013.


This concludes the 121st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 30, 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, August 28, 2012.

Thank you.

Thursday, January 6, 2011

Carnival of MS Bloggers #79

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

Blessings, Honor, Friendships, and Self-Awareness

by Laura of Shine the Divine


 through 
the dark of night
I offer bright blessings to all
may we each open our hearts a little wider
 absorbing the love and peace that surrounds us
illuminating any darkness we feel
saturating us with
Spirit's sacred
light



may the returning light of winter
continuously sustain us, 
you, me, our beloveds,
all beings beyond
time and space
discovering
holiness 
exactly
where
we
are



by Mary at Travelogue for the Universe
For Hillel Panitch,
my primary MS doctor and the relentless researcher of MS,
who had stellar bedside manner and
who I really had to be talked into seeing by my eye doctor. In the end he became my first choice neuro doctor and I am very picky, being an "old neuro nurse".
I wrote this shortly after I found out he was gone.

I was sitting in the McDonalds parking lot,
Eating my lunch on the road where I work
(I still work full time, thanks Dr. P...)
Assessing clients

And helping them access personal care.

The clinic called and my heart always skips a beat when they call me

Back to my other reality....

This is YOUR life, not some other sufferer.

They wanted to invite me to a tribute to Dr Panitch.

I was on the “a” list.

I looked around, was there anyone looking at me?

Did anyone see? Hear?

I wanted to be polite, respectful,

I wanted to say, Yes.

My schedule flashing in my head.

How could I do that, I thought.
It is for the MS society.

The people who thought my MS story was too long and when I shortened it they said it wasn’t quite right.

But it is for Dr Panitch, I thought,
A lifetime achievement award.

No, I said, so plainly, No.

I am honored (and I was sincerely),

But I cannot do it.

I lived in two worlds,

The Neuro Nurse and the Neuro patient.

My friends, coworkers from 30 years ago would be there,

as health care professionals.

How would I fit in?

My world, a subset of both nurse and patient.

Hearing he is gone from our material world,

I am relieved I was not there,

That my memories can be of him standing in the hallway,

Trying to peek at my progress on his study meds,

Briefly making eye contact, I smiled at him,

Trying to say what he has done for me is appreciated.

He has bought me some time,

He has given me expensive cutting edge treatment I would have otherwise gone without,

He put his hand on my shoulder and said, “Don’t worry, we will take care of you.”

And

He meant every word.

by Herrad of Access Denied


Giorno Di Mercato, 1976
Expressionist Art.

The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.

That is really what the internet is all about, simple and straightforward communication and participation.

Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.

I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others.

My words are not changed by anyone, every post, with the occasional interesting article, has been written by me.

My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.

In the 4 years since I started blogging I have made many friendships and received and given alot of support.

I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.

When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.

This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.

I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life.

It enables me to communicate with others around the world, even when I could not leave my bed for two years.

This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.

Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago.

I communicate regularly with people I have never, and sadly, will never meet, except online.

The internet has enabled me to communicate with others and be part of the world.

That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.

It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.


by Joan of A Short in the Cord

I'm going into my fourth year of "early retirement" due to disability.  As is my custom, I am reviewing lessons learned from last year.

The most important lesson learned is that I should not plan to have the same level of energy that I had before disability.  Last year, there were too many times when I believed that I was normal and had the same energy level that I had before.  So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion.   "What happened?"  I would whine.  Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.

But last year, I lost sight of my authentic self.  I lost sight of the reason for my disability.  This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise."   Bullpoop.  I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days.   I am not using them as role models any more.   I will be my own authority and not succumb to peer pressure.

This next year, I pledge to do less.  I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything.  I pledge to give serious thoughts to my priorities.   And I AM prepared to deal with the disappointments - mine and others.

Just thought you should know this now so that you will be prepared for a different year, too.

Happy New Year!


This concludes the 79th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 20, 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, January 18, 2011.

Thank you.

Comments for this post.

Thursday, December 3, 2009

Carnival of MS Bloggers #50

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


Newly-diagnosed Copaxone user Sarah says I Hit a Vein Today and....

It HURT!!!

Really bad.

It was in my left thigh, I fired and everything was fine. I waited my 10 seconds as the Copaxone slowly transfered from the syringe into my body and when I pulled the Autoject away, I almost passsed out.

BLOOD!

LOTS OF IT!

At the very moment I saw it I thought, "Ugh, that's not good". I cleaned it up and luckily it stopped bleeding pretty quickly. I sat on the side of the tub for a moment and took a look at my new word art, For My Life! "Yes, it is" I thought.
I cleaned up the 'scene', applied an ice pack, and went into the living room and sat next to the hubs. He asked, "What's wrong?" and I just shook my head, "Nothing". Clearly lying.
I knew the veins hurt like hell. Lesson learned. Mark the 'shot spot' before applying heat so I can actually see what I'm doing.
~~~~~~~~~~~~~~~~~~~~

by Judy of Peace Be With You


If I get weepy,
It’s usually because
I miss who I was.

I know I’m still me,
But my new garment sometimes
Does not fit too well.

I am mostly brave.
I smile through a lot that pains.
Aren’t I just like you?


by Judy of Peace Be With You


I sometimes forget
how impaired MS makes me.
I think I'm normal.

Looking at others
buying groceries with ease
reminds me I'm not.

I must remember
what it’s like to feel healthy
so my brain does too.


by Judy of Peace Be With You


Graceful is someone
who accepts life’s ups and downs
with cheerful aplomb.

I am sometimes good.
I scale the rocks and ridges
without falling down.

But frequently
I stumble into the ditch.
I must start over.

~~~~~~~~~~~~~~~~~~~~


Broken Tailed Traveler

How can I respond to the kind things you have all said to me in comments here on this blog and privately through email, except to say that I am grateful that this wasn't about me? I say this with anavah (humility) in my fullest understanding of the word. I was taught through the study of middot (soul traits) that this word (at least in Hebrew) does not mean humble as in lowly, but instead it means knowing when to step forward and take ownership and recognizing when to step back and allow others to shine. Perhaps in this instance we have all stepped forward in unity, illuminating the world with our shared awareness of the blessings we have received, despite or even because of our brokenness, with full acceptance of joy, much like this broken-tailed butterfly appreciating the fragrant orange flowers upon which it is feasting. I may have had a seed of an idea that became the first stitch in this quilt but it grew from the wisdom of many individuals collaborating. For this word quilt is truly an ode to all of us who participated in creating community here in the blogosphere as well as the travelers who have stopped by to witness our gratitude and in turn have become part of this comforting blanket; a community of humanity far and wide. This whole experience has been an unfolding, blossoming, opening, song of souls, blessing life; each of our unique voices joining in to create a harmony that is complicated, textured, rich and sweet. Indeed a choir of love that I hope will continue to reverberate in our hearts for a very long time.

As you can probably tell by my improved vocabulary, the steroids are beginning to heal the swelling in my brain. Over the past two weeks I have traveled to many lands much like this blog entry, at least if you had heard the changing accents through which my brain has conveyed the English language through my voice, it would appear that I was quite the world traveler. It has been a fascinating journey for my family. Every morning I start the day sounding completely different from the day before. Even inside my mind I hear whatever voice will follow before I open my mouth to talk…certainly a clue of some kind to an aspect of the process of speech formation. When this all started two weeks ago, my pitch was higher, my English was halting and kind of “broken”. I could easily have been mistaken for a recent Chinese immigrant, just learning my own mother tongue, American English. Then my syntax would be confused and I sounded somewhat like Yoda from Star Wars. At other moments my r’s were completely gone as were unessential words like “a” and “the”; s’s were not present to indicate plurality. Then I would go back and forth from this more toddler like formation in speech to a slightly southern sounding voice, a lilt to my voice as though I were from Georgia or South Carolina. Yesterday my pronunciation shifted so that I sounded like I was from somewhere in Northern Europe; an undisclosed country, but certainly not the Philadelphia accent I grew up with. Today the morning began with toddler speak and difficulty retrieving words but then for most of the day it has been a combination Irish brogue with a slightly Canadian flavor. Late this afternoon, around 3:30 or so, my normal voice, with proper syntax and most of my vocabulary returned. I did go back to Irish for a wee bit this evening and then found my natural voice again. Why this fluctuation and world travel is happening in my brain is a marvel; a mystery of misfiring neurons altering my speech patterns, I suppose. It has been a “long strange trip” (to quote the Grateful Dead) to be sure. It is as though I am an actor or perhaps channeling the voice of another being, and yet beneath all of this lies my “witness consciousness”; my own thoughts below the surface sometimes accessible through language and at other times just “watching”, unable to fully communicate all that I wish to convey. And so admittedly there is frustration, especially when I can’t remember the precise word I want or when I sound more like Elmer Fudd than a 44 year old woman…but my curiosity about this bizarre phenomenon has allowed me to once again discover the blessing through the humor of this situation. Yes this time around it is the gift of laughter at the surprising nature of MS that is sustaining my family and me. My eldest daughter is sorely missing my brogue this evening. This was her hands-down favorite. I must say we all enjoyed a moment the other night when I exclaimed while viewing a movie: “This is weally, weally, cweepy!”

Who knew I’d feel a loss as my completely uncontrollable speech patterns began to disappear?! But tonight as I’m writing this, even I’m a little bummed out that I just sound like ordinary me again. And to think, when this all started I cried! I don’t know how I’ll sound tomorrow morning, of course…the hour is late, before I know it day will break and a new adventure will be revealed.


This concludes the 50th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 17, 2009. 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, December 15, 2009.

Thank you.
Comments for this post.

Thursday, January 29, 2009

Carnival of MS Bloggers #28 - Internet Forum Edition

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

Forums and Message Boards for the Chronically Ill

Many readers are aware that I participate in various MS communities online and am somewhat skeptical of the quality of information and support which is often given. You may also be aware that I try to keep up on research related to multiple sclerosis and share some of that with readers.

As important it is to know 'how' to read the latest news or announcements of medical advancements and clinical trials, it is equally important to know how to find credible, reliable objective health information on the internet.

Something which we don't often think about is the quality of the online communities in which we choose to participate. Some are moderated and require that every post be approved by a human, but some have little to no moderation in place. Then there are the forums which are designed to collect and analyze patient data and behavior- see "what can happen when patients have access to one another's data."

This Carnival edition is meant to focus on the drawbacks and dangers of online forums for patients, not to highlight the benefits. We will need to feature the positives in a future collection of posts. First, the bullies.


by kmilyun
The first open use cyber-bulletin board I remember using was way back when (hear my bones creaking here) . . . a Prodigy one that was accessible via a V.22 1200 bps modem. It had a simple menu with four items and you had to wait a day for any reply to be posted. It posted on a board for recovering alcoholics. And, here is the point, there were “trolls” and “bullies” then and there are “trolls” and “bullies” now. They just have more available means and mediums to flourish in.
Recently I have joined a few multiple sclerosis forums. I don’t post - I lurk. Why? I do not choose to hang myself out there and be annoyed by the trolls and bullies. I have learned a lot reading through the posts. Some forums are better moderated than others and I have to apply some common sense in distinguishing the facts from the B.S.

Just remember you are never as anonymous as you hope online and words do hurt and there are alligators out there waiting to snap.

Cyberchondria has been on the mind of Nina lately.

There have been a few articles over the last couple weeks on how people are using the internet in relation to health issues. Microsoft published a research study. The results are interesting:
Our results show that Web search engines have the potential to escalate medical concerns. We show that escalation is influenced by the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user’s predisposition to escalate versus to seek more reasonable explanations for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect that such anxieties can have on interrupting user’s activities across multiple sessions. Our findings underscore the potential costs and challenges of cyberchondria and suggest actionable design implications that hold opportunity for improving the search and navigation experience for people turning to the Web to interpret common symptoms.
The research has been getting some media attention from NY Times and Guardian.
I agree and disagree with it. I don’t believe I escalate my symptoms. I educate myself on what I am experiencing, but not in an unhealthy way. I do think I am probably on the abnormal side of the fence though. From reading message boards on MS, I totally see this happening on a regular basis. Heck, Tom had an eye twitch and he thought he had brain cancer. It happens everywhere.

I know that doctors are recommending people not read about their condition on the internet. My doctor warned me and agreed with my opinion of MS message boards. There are a lot of people that get some tingly feet and think its MS. There is a long jump from tingly feet and MS. Maybe if I did escalate my symptoms I would have found out about the MS 3-4 years ago.

Which brings up an interesting point… would I have made different choices if I know about MS 4 years ago? I think I would have which scares me a bit.

~~~~~~~
Finally, Rebecca says that for those with MS "internet discussion boards and chatrooms are usually a bad deal."

Unfortunately, for those with MS [ed. some of us], the use of Internet discussion boards and chatrooms is usually not a good idea. One exception is looking at these boards and chatrooms as a way to possibly uncover the side effects of medications and treatments. For example, some of the drugs for MS cause hair loss, yet this is often not mentioned by doctors or pharmaceutical companies. Other than using the boards and chatrooms to find information on side effects, the boards and chatrooms are of limited value and can even lead to unwise and unhealthy decisions.
These problems occur in part because the online discussions are often frequented and even controlled by those who, because of psychological problems, are only imagining they have MS. Problems also occur when fake doctors find their way to these discussions, when sellers of quack cures are looking to make a quick buck, when hustlers prey on the natural sympathies most of us have, because group members sometimes encourage others to engage in unhealthy behavior and because the knowledge of group members is often dangerously limited.
The problem with control of discussions by individuals who do not have MS occurs because some individuals with psychological problems seek attention by faking MS symptoms. Such individuals have often been told by their doctors and neurologists that they do not have MS but these individuals will often persist in saying that they have “probable MS”.
Such individuals are not necessarily easy to identify in Internet discussion groups. Often they will come off a charming and supportive–at least until they are no longer the center of attention. The advice they give, however, is usually poor. Because they seek drama, they encourage others to have dramatic treatments. Why take an aspirin when a chemo drug may be thrown at a problem? These MS fakers do resort to bullying to get their way. Unfortunately, bullying is common in Internet discussions.
Other fakers in discussion groups include fake doctors. These individuals will call themselves doctors but they are not medical doctors and have limited knowledge of multiple sclerosis. Just because someone calls himself or herself a doctor, does not mean he or she is actually a medical doctor. The person may have a mail order PhD degree or some other degree actually requiring little training.
The fake doctors may be looking to make money off of desperate MS patients. After they have participated for a short period of time, they may offer a miracle cure for sale. Or they may encourage discussion participants to use their services.
Others also participate with an eye to quick profits. It is not uncommon to see hustlers trying to sell various miracle juices or supplements that supposedly cure MS. Or a more sophisticated ruse is to build a web site, sell advertising based on the web site and then use discussion groups to generate visits to the site. In this case, page views at the web site add up to additional advertising dollars.
Finally, there are those who try to get money out of others without offering anything other than a good sob story. While many with MS are impoverished, a wary attitude towards those requesting money from other members of discussion groups is appropriate. Some of those requesting money do not even have MS and should be out looking for a job.
Another group of problematic individuals active in Internet discussions are individuals with addictions–usually alcohol, drug or food related. These individuals are problematic because they will tell newcomers that factors such as drinking alcohol or diet do not matter even though doctors treating patients with MS know different. For example, doctors know it is difficult to cope with both obesity or malnutrition and MS. Diet matters.
Finally, there are individuals who are honest, loving and caring but who have such limited knowledge that their input is often not helpful. For example, one patient in a discussion group described symptoms that sounded like a heart attack but another person said these symptoms sound like MS and suggested that the person with the chest pain rest. The person with the chest pain should have been advised to see a doctor immediately.
It is important to remember that Internet discussions cannot replace face-to-face contact with others and real social support. If you feel lonely and socially isolated because of MS, call your MS society and ask for advice on how you can break out this loneliness. Or call a church and other group you trust and ask for help. Maybe a change in jobs or housing is needed so it is easier to maintain contacts with others and develop new friends.
Also, if you do feel lonely, promise yourself that you will do something to break out of isolation. Unfortunately, use of the Internet for more than a limited amount of time increases depression. This is the last thing you need when you are already coping with MS.
Remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Also remember that the articles you read on how great Internet discussions are have been carefully placed by businesses trying to make money. These businesses are not going to tell you about the many real problems involved in Internet-based discussions. These businesses are not going to tell you about the MS fakers, the hustlers, the alcoholics, the very obese, or all of the bad advice.
Again, remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Please remember to consult your doctors about how to stay as healthy as possible. Nothing here should be interpreted as medical advice. Instead, please use the information you find here in your discussions with your doctor.
Copyright 2008 Rebecca Hoover

This concludes the 28th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 12, 2009. 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 Monday, February 9, 2009.

Thank you.
Comments for this post.