Monday, May 31, 2010

In Remembrance

Today, I honor the memory of my grandfather, a navy pilot in WWII,
who died in December 2009.

                The Lone Sailor© Statue in Washington, D.C.

Sunday, May 30, 2010

Timber!!!

First it was the jungle that our grass was. Hip high. Now it is a rather large (and by large, I really mean HUMONGOUS!!) branch which come crashing down during a recent storm. This 'branch' is really the size of a tree itself.


Here's another view. In the background is our detached garage.  Guess we'll be calling a tree service out sometime soon.

Saturday, May 29, 2010

Playing with the Conductor

Conducting student before his exam: "An orchestra admires a conductor who knows his own mind and isn't afraid to speak it." Regarding professional musicians.... "What they think doesn't matter, they are merely the guinea pigs for MY interpretation."



Tune in at the 5-minute point.

Principal Horn: "I'm SO sorry, sir. Made a domino there, I'm afraid. I'm terribly sorry."

Conductor: "Disgraceful, disgraceful incompetence. Do it again."

Principal Horn: "I'm sorry sir, bit of trouble with our lip."

Conductor: "Don't give me any of your lip!"


Hattip to Bruce of Horn Matters for bringing this gem to my attention.

Friday, May 28, 2010

Sharps Containers Repurposed.

Trying to organize things around here (just a tiny bit), I found some unused Sharps Containers.  When I was using Copaxone, I used a large laundry detergent container instead.  It would hold about 9 months worth of syringes.

Now I don't do shots anymore so what do I do about the red plastic tubs which are hard to miss?

I found a new use for the random Sharps Containers floating around the house.

Used Battery Container!!


Now how smart am I?
:)

Thursday, May 27, 2010

A Sythe Through the Jungle

I meant to post this when it happened, but it's never too late to make fun of oneself.

Meet my backyard only 10 days ago.  Ignored, neglected, overgrown, turned to seed....

A Jungle!!  Or Little House on the Prairie or imitation Prairie.


See the path in the foreground?  It was forged with a mighty Sythe.

.....Or maybe it was the elbow and back grease of Rob, with the help of a lawnmower purchased years ago to suit the height of two less than 6 feet tall women.


Sorry Sweetie for the short lawnmower and low handle (at least for you, it is perfect for me but I don't really mow anymore now do I?)  Except I did do some mowing on the side of the house and in the front yard.  Rahrrrr!!!

Wednesday, May 26, 2010

National MS Society asks about Your Use of Social Media

Do you remember the Survey which the National MS Society asked that we bloggers answer back in March?

Well, since that time, I was interviewed for an article which will appear in the fall edition of Momentum magazine.  I am one of three bloggers (including Trevis Gleason and Marc Stecker aka. Wheelchair Kamikaze) who were asked about how they navigate MS information around the internet.  I got to read a copy of the piece a few weeks ago and it should be good.

Anyways, so the National MS Society is asking a few more questions which will be included in the survey results presented in the article this fall. 

Please go here to answer four simple questions regarding your use of social media.  I did.

Kiss Goodbye to MS on World MS Day

Today, Wednesday, May 26, 2010, is the 2nd annual World MS Day as designated by the Multiple Sclerosis International Federation.  It is being celebrated around the globe by MS organizations and patients worldwide to raise awareness of the disease and to support raising funds for research.  I saw the following promo coming out of Australia and just had to share it with you.

Tuesday, May 25, 2010

Wendy Booker, Inspiring Others, Living with MS

I had the privilege of talking to Wendy Booker this weekend.  She is known as a mountain climber who lives with MS.  She has run countless marathons and raised money and awareness for MS causes.  She founded her own non-profit (not MS-related) and have helped others do the same.

I emailed some questions, she sent wonderful responses, and then we spoke on the phone yesterday.  It was impossible to capture everything said, but I came away with someone to keep in touch with and to be inspired by.  We could have spoken for hours.


My interview with Wendy can be read on MS Central, below is portion from that post:

Desiring to give back to the communities which have supported and touched her on her many journeys, Wendy created The Other Side of Everest Educational Foundation. The Foundation supports the children of deceased Sherpas, aims to improve the lives of both children and mothers in Nepal, as well as educating and inspiring under-privileged and challenged school children in the United States.  The Foundation grew from Wendy’s desire to support one baby whose mother was widowed at age 19 after her Sherpa husband died in a climbing accident in 2008.

Although I might disagree with her after speaking, Wendy says that she “was nothing extraordinary” before MS; if not for MS, she was on her way to “becoming a couch potato.”  Serendipity works in mysterious ways.  With MS, Wendy has found a way to make a difference in other people’s lives...literally around the globe.

Read this post in its entirety:

MS Around the Globe: Wendy Booker, Mountain Climber and Inspiration

Monday, May 24, 2010

Blogging


Gotta get around to creating some content. :)

Sunday, May 23, 2010

New MS Bloggers in the Neighborhood

MS Newb
I feel like the new kid on the block, trying to figure out who’s who in the neighborhood. The Newb! Ms. Newb! MS Newb! Yep, that’s me. A newb, but not a n00b. Definitely not a n00b.

So, with this blog, I’m putting myself out there (scary!) and sharing my journey down this unknown path. My decision to not use disease modifying drugs has certainly set the course, but thankfully not into uncharted territory.

I experienced my first episode in February 2010 and was diagnosed with multiple sclerosis (MS) a month later. I’ve been living with the diagnosis for two months now, and have possibly been living with MS for over a year.
En Route to Liberation by Mark
The results of my ultrasound are as follows:

"Although there is no direct evidence of any narrowing or blockage in either internal jugular vein, the flutter and turbulence have said to be an indication of CCSVI".

The Dr who performed the diagnostic work explained to me that this is typically what they are finding in MS patients and is satisfactory to have the treatment in other countries.

Next step...
Fight for CCSVI
My CCSVI treatment took place Monday, on the 3rd of May 2010.I had 2 stenoses in my left jug (high and low) a mild one low in my right jug and a severe in my azy.There were no stents placed. They put stents only if ballooning is not an option and they are doing very well if you ask me.

HAVE MS???
FIX YOUR VEINS and take it from there.
Michelle's MS Journey of Hope
Since we returned from India I have been so thrilled with the small, positive changes in the MS and I have been riding high. I want to do everything and NO I don’t know when to stop (a personality trait or personality fault whichever way you want to look at it). Since we returned from India things have been relatively busy. Not just “back to the daily grind” busy but there have been a few added issues to manage as well. Having a bit more energy now I thought I could bring even more meaning to my wonderful life; I suppose therefore that some of this stress has been self inflicted.

Thursday, May 20, 2010

Carnival of MS Bloggers #63

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

Disability, Ability, Physiatrists, and Determination

Am I Really Disabled?
by Jennifer Digmann

Sounds like such a stupid question. Me, the one living with Multiple Sclerosis for the last nearly 13 years, but almost every morning I wake up thinking, “Just give me a second. I’ll jump out of bed and get moving.” Silly right? But, my dreams play a small part in this deluded thought. Stupid dreams! I still walk in them, how deceptive and unfair is that?

Since I met Dan, I have never walked.  But in my dreams, we often walk together into crazy, nonsensical adventure all of the time – hey, dreams don’t have to, and trust me, mine don’t, make sense. And I guess it’s good that I still walk in them because it reminds me what I’m fighting for. I believe, I HAVE to believe, I will walk again!

But am I really disabled?

You’d think, the wheelchair or the reality I can no longer roll over in bed, or get to toilet without help might tell me. But, un-uh. Still don’t see myself that way. As for those little blue wheelchair signs designating handicapped parking spots and restrooms, those are just signs. That’s not me!

This lack of acceptance, i.e. denial, might explain my constant frustration and frequent tearful outbursts when no one is looking. But those are mine to live with and deal with, and pity is certainly not acceptable or being asked for.

But again I ask, am I really disabled?

Recently, I was asked by the office of Student Disability Services to tell the Facilities Management staff at Central Michigan University how they could improve the handicap accessibility of their buildings. Guess that should’ve been a clue, but truly, it was the 2 women in wheelchairs I met that night that made me doubt the genuineness of my disability.

They were also providing the FM staff valuable feedback on building improvements. Only they were sharing stories of cruising their power chairs around campus, or through town, the daily difficulties of riding public transportation, or having to replace worn out wheels.

I couldn’t relate. After all, I ride in my van and can’t imagine driving my chair enough to wear out my wheel’s tread. Really, I’m only kind of disabled.

But when they started talking about getting stuck in the snow or having slippery wheels from said snow and about hard to open power assist doors. I started to relate.

Then the topic turned to the best handicap bathrooms on campus. And when we all knowingly exclaimed, “Library. Definitely the library.” It started to sink in. I was with my peers.

Sure my MS support group is full of people who understand this disease, but none of our regulars use a wheelchair. And Dan, he provides tremendous support and understanding. But it was in that room; with those women in wheelchairs that it began to be okay.

Yes, I really am disabled. And after not walking for the past 8 years, you are probably thinking, “Well duh! Finally.” But for the first time, I felt comfortable enough to say, “I am disabled.” (of course with the caveat, ”I make disabled look good!”)

And maybe now, I’ll even be okay with photos of me in my chair. Um … probably not. Call me vain, but I’m thinking I’ll still probably crop it out. :-)



She wasn’t shy.  Nor intimidated.  She walked up to me and gingerly picked up my cane which was leaning against the table.

“Don’t touch that” her mother said.

It’s OK” I replied.  “You can play with it” I said to the little girl.
From that moment on, my new friend didn’t leave my side.


Her name was Airyanna.  (I thought she said “Ariel”, like the mermaid) 
She was three-years old.  Cute as a button and wise beyond her years.

I showed Airy a couple of very lame tricks with my cane (I admit my repertoire is rather weak!) and she clapped & squealed with approval.

“I try” she said.  And she performed my “tricks” to perfection.
"I applauded for her…while thinking I really need to work on some new tricks.

Noticing her socks adorned with frogs, I said “I like your socks.
Can you jump like a frog?” She squatted like a frog and jumped several times.

Then she quickly turned to me and said “Your turn!”

“Oh, I can’t…”
“Yes you can.”
“No I ca…”
“Yes you can.  Try it.”

So I got down like a frog and made several “leaps,” all without losing my balance or spasticity tightening my legs like a department store mannequin.  Airy clapped with approval and said “See I told you you could do it.”

The kid was right.  Three-year old luck I figured.

Next, she hooked my cane around a chair and jumped over it.
“Your turn” she said.
“No, I can’t” I said.
“Yes you can.”
“No I can’t.  I have MS—a degenerative disease of the nervous syste…”  She interrupted “Yes you can.  Try it.”

She would hear nothing of my explanation of MS.

Having a vertical leap that can be measured in millimeters, I picked up my right leg and threw it over the cane.  Then I dragged my left foot over to complete my “jump.”

Airy clapped.  “See I told you you could do it” she exclaimed.
Isn’t it medication time I thought to myself?

I asked her to pass my cane as I wanted to walk and throw a dirty plate into the garbage bin which was about 10 feet away.

“You don’t need this” she said referring to my walking stick.
“Yes I do–I can’t walk witho….”
“Yes you can.”
“No, remember my MS?  The chronic disease?  Myelin sheath…”
“Yes you can.  Try.”

So, slowly but surely.  One foot in front of the other.  My arms out like I was walking the high wire, I made my way to the trash can.  Again, Airy applauded.  “See, I told you!”

Yep she did.  She told me I could do lots of things that I thought this friggin disease had stolen from me.  Who would have known there was no need to consult medical specialists with their wall full of diplomas.  No need to take pills with names I couldn’t pronounce.  Or undergo examinations & treatments costing thousands of dollars.

I only needed to talk to my new little friend, Airyanna.

Thanks kid for giving me some much needed confidence and restoring a little faith & dignity in myself.  The short time we shared together was just a couple of hours, but the impact you made on me will stay with me forever.

Class dismissed.



I get it. I do. You were diagnosed with MS and you are scared. You don't want to "end up in a wheelchair." (There are worse things.) You were just diagnosed in the last couple of years, maybe it was over 10 and you were doing just fine, thank you, but now your MS is acting up and you are searching for comfort, answers, help. Really, I feel for you. I've been there. Before the Internet, before cell phones and email, I've been there. My blog is meant to help you, comfort you, maybe answer a few questions. I also hope to show anyone who stops by that having MS doesn't define who you are. Life goes on.

That said, if you have been following my blog (and of course you have, AND of course you remember every story I've told...hahaha) then you know I have, after 20 years post-DX, claimed the title of secondary progressive MS. My neurologist, a few years ago, told me if I didn't go on Novantrone, that I would, "dwindle." (such a cute word, I still say I'm going to name my next dog that, "Here, Dwindle!")

My plan is to live my life with the support of a team of doctors. The draft seems never ending. I DO have my team captain, which is huge and I thank my lucky self-luminous gaseous spheroidal celestial bodies of great mass which produce energy by means of nuclear fusion reactions (stars) every day! But doctors retire, move away, my MS doctor jumped ship in 2004 and I my search has been ongoing for a replacement.

Now, I don't have to tell you that your MS Doc will be one of the most valuable relationships you can have., whether you were recently DX or were DX 30 years ago. Depending on your age, you will probably die with MS. (Not FROM it, but WITH it.) Yes, I said it and I'm sorry if no one else has told you that. But please, this is not necessarily a bad thing. IF you get on with life. Your MS Dr. should be the one to help you do that. Don't settle for anything less.

Sooo, taking my own advice, and I must since I live by "I never expect more of anyone than I do of myself," I have gone through some, er, how can I say this in a nice way, dumb ass neurologists. The most recent one was on my short list until she deserted me in an ICU, HER hospital's ICU, for days, while I was dealing with some virus or infection (one of the complications that CAN kill you courtesy of MS ) and the first time I saw her after my adventure to Hell and back, she had NO idea that I had been in HER ICU. (Had she returned my calls, messages or emails....) That Dr. fell off the list. Seattle is a big city, but how many neurologists can I dump before they see Diane coming and run the other way? (And FYI, doctors are notorious gossips!)

Sooo, my yearly appt. was approaching, I basically endure them, shove plastic brains under my shirt or act like a fool to try and get some laughs out of a boring and unnecessary meeting. I mean, I'm SPMS, there are no BIG PHARMA drugs for me, no surgeries or magic exercises. I have my chair, my walkers and canes, all the material needs are met. Only myelin repair can help me now---by way of a doctor appointment. You dig?

Now I was called out on this, I mean it was a breaking! (Yes, I'm showing my age, but at least I'm in the 90s now!) A woman, my age, DX 20 years like me, went ballistic when, after she told me I should go to her gay/MS support group, I said (and I SWEAR this was all I said!), "Why?"

Amazing how many times that small word has gotten me in such big trouble! (And, no, I am NEVER going to stop asking.)

This woman told me she wanted every new MS drug that came out (I couldn't believe she actually said it.) and "I am not going to quit fighting!" Game on. To which I replied with indignity, "You think I don't fight?" (My voice was only slightly raised.) After that she backed off, but became cold and obviously steaming, which led to a total melt-down against the passing by maintenance man and me. It was ugly. He and I were stunned, she stormed off, returned after about 15 minutes and apologized, he and I were like, "No problem. Difficult times right after you move in here, blah blah," and she split again in her scooter. He and I never spoke of it again.

But I hear YOU, some of my readers, yelling the same thing at me, thinking the same thing when I rant about the snake-oil drug dealers of MS Land. But, hear this: I do NOT discount you.

I don't have answers, mostly my own piecing together of MS information, I am fascinated by the whole journey we are on together. There are so many unknowns, so many possibilities, and this is why I consider MS an adventure. While I feel confident in my decisions, I could be completely wrong---I simply require proof that I am wrong.

Still reading? Bless you. Back to the point of this War and Peace with MS: My neurologist had been trying to (and this is all my perception) dump me off to another in a long line of worthless and border-insane physiatrists (a physiatrist: they are MDs who specialize in rehab and figuring out what your MS body could use help with. Some people with MS only have these as their MS Doc and they THINK they are neurologists---Nope, just MDs...if I had a dime for every person with MS I had to explain that to, well, I would be HALF as rich as the dimes from all those who never believed me!) , so I had no intention of seeing another one.

Two days, then again one day before my MS yearly chit-chat, I called to confirm the time. (A must do since my van ride there depends on accuracy.) Both calls confirmed A-OK. I had set the appt. TWO MONTHS ago. 4pm the day before appt. I get a call changing my time by TWO HOURS and MY DOCTOR! "Dr. XXX is unavailable." (sure) I argued the time and we debated the time until I got my same time back but with new Dr.; I later called back to confirm it was a neurologist and how to spell the name. Was this fate? Maybe this would be my NEW team member and I could dump Dr. XXX!! Drat! I wanted to dump her first. She never liked me after I called her out about taking money from a drug company to speak about their drug. (Silly, girl. I assured her not to feel bad, "You all do it."

Morning of appt., oh, remember how DR. XXX wasn't available? I called right back that day and after saying I was a new patient, yep, she was available. They also had NO record of me ever having an appt. with Dr. XXX---hahahaha, this was planned far in advance. ANYHOO, I start thinking about the name of the new neurologist and yep, it was that physiatrist who Dr. XXX had been pushing. You know what I hate? Lies. Attempts to manipulate me because I am deemed too dumb, or unable to fight back. BECAUSE---if they do it to me, then they will do it to my 103 year old aunt in a heartbeat. You know?

Okay, I choose to make this a good day, a good experience---I am in Fate's hands.

After a mix-up of my records (they had no idea what MEDICINES I was on! Good grief. "I am just a Temp." Fair enough. I finally got to meet Dr. ZZ "Everyone loves Dr. ZZ" That is another way of saying, "If YOU don't like her then something is wrong with you." Hold onto your Fez, I WUV HER! I have a new team member! Hooray! Now let me tell you why.

She was honest. She did not hesitate, to find the legally correct answers. She had (sit down) READ MY REPORTS! She even brought up my radial nerve palsy from 2005! She could finish my sentences, CORRECTLY. She agreed with me about all the hottest new and improved MS blugs. er, drugs. She looked me in the eye. Oh, man, my dream come true! She GETS it. And after I told her how I knew what Dr. XXX was doing and why (Because neurologists diagnose MS, they get the MRIs and try drugs on you; you MUST start there, but where I am now---all that is done. Unless a cure or myelin repair comes along, a neurologist has better things to do. That is the reality.) and Dr ZZ agreed with me and apologized that it wasn't handled better.

Also, she is so damn CUTE! She is disarming, and I am not easily disarmed. ("I will be bullet proof..." a song on the charts.)

Sigh. I was so relieved. Then! The best yet! I described my exercise program, my walking program, my goals, and she said and I quote, "You are doing all the right things." She was "impressed" with how well I was doing after 20yrs DX (and actually 40yrs my first symptoms began) and YEA! I am so empowered now and full speed ahead! No more quilt, no more doubts. I'm living with MS and moving forward.


A Parallel World
by Judy of Peace Be With You



A parallel world,
that is where I sometimes feel
MS has sent me.

Surely there can’t be
people who wake up knowing
it’s easy to move.

Was I one of those
who blithely took for granted
running down the stairs?


Then There Were Four
by Wendy Booker

In 1914 Ernest Shackleton posted a notice “Looking for willing and able bodied men to go on a perilous journey from which they may never return” Over a 1000 applied.

In 2002 I answered a similar notice. I was one of a handful of ‘applicants’ and so began my amazing journey to climb the highest mountain on each of the seven continents. I wasn’t a climber. I wasn’t an adventurer. I had never been higher than a few gentle mountains that make up part of the White Mountains of New Hampshire. I went with my father, I think I was ten.

But the call to attempt to go on a perilous journey of which I knew nothing but wanted to learn was too great and so with no experience in 2002 I went to Alaska to climb Denali. I did return but I was humbled. And thus began my new life…..

My journey was further complicated by the fact that unlike Shackleton’s able-bodied men, in 1998 I had been diagnosed with MS but that above all else was my very personal reason for attempting this mission. I wanted to see if I could climb with and for MS.

Mountaineering is unlike any other sport. It is a very solitary sport and a team effort both at once. The challenge is met by bringing together a clear, responsible decision as to what is the smart thing to do. The ego must be totally eliminated and the glory or self-adulation to reach the summit must be weighed by the total cost of what it takes to get there. As a friend so eloquently put it, “This is not a missed shot in a tennis game, there are no do overs. The ramifications of a single decision are enormous and the responsibility lies totally on and within the individual climber.” A poor decision not only affects the individual climber but also puts great risk on the people who must now give their own lives in order to save that person. A summit will only be recalled or glorified for a finite period of time. A poor decision on the way to that summit will carry a lifetime of regrets or take that life altogether.

It is all about individual choice. Reaching one’s personal boundary and recognizing that we have a responsibility to ourselves, those we care about, the people we are climbing with and to our personal mission. The hardest choice I have had to face in the 12 years I have been living with MS was to turn back from a summit attempt on Everest… twice. I have had to recognize that on Everest I reached my boundary- sustained life above 17,000 feet, where the air is painfully thin and took my body to a place where it couldn’t function with Multiple Sclerosis. My MS could not tolerate the lack of oxygen to the brain and the enormous daily temperature fluctuations on the mountain. Everyday while others on my team grew stronger I was getting weaker. I noticed new symptoms I had not had before as well as a severe increase of those I have lived with for years.

Sir Ernest Shackleton’s perilous adventure to Antarctica could have ended very differently then it did. Although the expedition failed because he did not reach the south pole, Shackleton triumphed over enormous odds to bring all 28 men safely home.

My mission has been to educate, motivate and encourage those facing MS that they too have the ability to take an amazing journey with their disease. They have the personal responsibility to get on a medication to make themselves the best they can possibly be to face the challenges of the mountain ahead. Just like an individual climber facing insurmountable odds, discomfort, fear, trepidations and perseverance, we with MS face this mountain every day. But only within ourselves do we hold the individual decision to push back, reach and recognize our limitations, challenge our hearts, minds and spirit and live a fulfilling life with and for MS. It is not an easy mission but I personally know it is fate that brought us here. Our spirit that will guide us through. And the rewards are like no other.
Like Sir Ernest Shackleton my mission ended very differently than I had expected. But I did not fail. I have attempted Everest twice. I took MS to the highest it would allow me to go. As the medical staff at base camp have documented, the bar has been set. I am a mountaineer, an adventurer, an explorer. And I’m not done yet.

Wendy, Safely back at Everest Base Camp
Climb On!


This concludes the 63rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 3, 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, June 1, 2010.

Thank you.

Comments for this post.

Wednesday, May 19, 2010

Carnival of MS Bloggers #62

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

Thoughts on Chronic Cerebrospinal Venous Insufficiency

This is an early edition of the Carnival featuring posts related to CCSVI.  We will have our regularly scheduled Carnival tomorrow as well.  Enjoy the bonus this week!!

Note: The National MS Society presents information regarding CCSVI, including a recording of the webforum held on April 14, 2010 and hosted by NMSS and the American Academy of Neurology, on their website.

CCSVI Tempo
by Judy of Peace Be With You



CCSVI,
the latest lightening rod
for strongly held views.

Some want us to sprint.
Others ask moderation.
Patients want relief.

Do we ask too much
of this new experiment?
Let's please find the truth.


by Ginger of CCSVI, Liberation Surgery & Me

Before my liberation treatment I was not able to live in temperatures above 20 degrees Celsius. In fact, temps around 18 were optimum for me. In the late Spring and entire summer I would be a prisoner in my air conditioned home, held hostage by the sun's heat. I would joke to myself that I was like a vampire but the joke just wasn't funny anymore after living like this for the last 10 years. If I exposed my body to any type of heat above 20 degrees I would get extreme pain in my hands, arms, feet and legs. My feet would feel like they were burning and my body would go all tense and tight and I would not be able to walk at all. I would become dizzy and experience vertigo.

Since spring began a few weeks ago and the temperature has started to rise I have been watching myself with great interest as I'm hoping my heat intolerance is gone. I have had hints that it might be gone like when I had a hot bath and was able to clean the tub after. (Usually I felt like a limp piece of spaghetti and had to go directly to bed leaving the tub to cleaned on another day.)

Two days ago I decided to take my dogs to the off leash park with my son Darin and his puppy. It was around 22 degrees Celsius so I was a bit concerned how my body would react. When I started walking in the park my left knee felt like I had a tensor bandage wrapped around it and I thought "Oh God! here it comes!" But then I kept walking and the "hug" went away. I was waiting for the ax to fall but it never did. I was aware of the sun's heat on my skin and the breeze blowing but I had no exacerbations at all!

I was able to walk in the bright heat of the sun with my dogs and my boy like a normal mom. I did not explode into flames like an Anne Rice character. This was the most marvelous feeling and I laughed because for most people it was so mundane and ordinary for them. My right leg and foot are still the weakest links in my recovery and the leg did start to feel slightly burning but that was all. I am hoping that when the temperature really goes up I will be able to withstand the heat and enjoy my summers again.


Goin' the other way on the CCSVI limb
by Doc of The Gimp Chronicles: Shade-Stealing Crips

I was recently asking some people who know I have MS why certain people reacted as if I had a potentially explosive brain tumor when they heard I have MS. Without hesitation, the response was "they just don't know better."

OK, I can dig that, I guess... because it corresponds with my own lack of overwhelming concern about dying from MS, or disability. I've never really felt like MS would kill me, and I've long been ready to be a fulltime crip. I won't be overly stressed when it happens.

I've had signs and symptoms for at least 3-4 years now, with diagnosis Jan of 2009, but I kind of figured well, can anything be done? It can? Well, let's do it. That is not to say I haven't had bad times and that I won't have more... doesn't mean I enjoyed avonex shots and side effects (which went away), but I just don't have the feeling of MS as a "horrible, disabling, crippling, monstrous" yadayadayada life-sapping badguy. I know I must seem very lucky to some who have MS-- I have insurance, a fanTAStic neuroimmunologist, a working clinical trial, a job, and a genetic predisposition to get things done. I have done about 90% of things I've wanted to (honestly-- i'm just missing the Oscar), and all that is left is to live a good, decent life and create as little terror and pain as possible.

So yeah-- I just am not hopping on the CCSVI bandwagon. There are serious problems in the methodology of research (yeah, I'm a PhD in English, but I read pretty well too). My major surprise is that I didn't really think I'd see a shrill (both ways) medical fad/ cure/ treatment/ whatever it is or might be acted out as they were in the past. Hey, I'm a vegetarian, I like my herbs and adore my teas, but it's not those that turned the Xmas lites off in my brain. Whatever the reason, the clinical trial drug works VERY well in me-- may not in others.

I look at it this way-- I was so ridiculously low risk for MS (not Scandinavian, raised in the sun, not even ONE yeast infection, and a non-environmentally risky job-- but yeah, female), yet my lesion load was so tremendous that it took 8 docs 7 days or so to hesitantly determine what I did NOT have-- by god, SOMEONE would have noticed blood drainage/circulation issues!

Or not...

And that is how the discussion of CCSVI goes. There is always someone who was cured or will believe themselves to be cured via unorthodox ways-- I swear one person said he was cured by parsley, chorella, and vitamin D. HMM!! Shouldn't the vegetarian have been protected from MS if veggies were the key? Undoubtedly, I'd contracted some invisible yeast infection.... or it's stress... or blocked veins.

I really do hate monolithic arguments. I can understand fear and loathing of MS. I am sure I'm relatively "lucky". I'm even a bit credulous.

But not about MS. And if one more person declares "all docs"/neuros are "in bed with Big Pharma" I'm gonna smack them freakin' silly. With my still-functional right hand, then beat them with my occasionally-needed cane.

Grump. I await some science.

And anyone mention grammar errors are "not supposed to be in English-major blogs!", I will say I'm off duty-- and THEN beat 'em with my cane. Grr.


by ManOnAMSion

It is human nature to want a quick solution to our problems – the silver bullet that will make it better.  The recent excitement around chronic cerebrospinal venous insufficiency (CCSVI) and “liberation treatment” put me in mind of that fact of life.  The reality is that this is a theory and a treatment in the early stages of research, and you need to put your multiple sclerosis into remission NOW.

It has been widely reported – in sometimes breathless, overstated terms – that Dr. Paolo Zamboni of Italy has discovered the cause – and cure – for multiple sclerosis.  If only either were true.  As well reported by Canada’s National Post, this very preliminary research has been totally blown out of proportion.  And if people living with MS line up for unproven surgery, rather than doing what we know we can RIGHT NOW to treat our MS, the results can be harmful.

It is true that Dr. Zamboni has found some support for a hypothesis of a connection between restrictions of cerebral blood flow and multiple sclerosis. And the limited data indicates that there may indeed be a correlation.  But  it isn’t clear to me whether what he has discovered is a cause of MS, as opposed to be yet another symptom, and this doesn’t point to the silver bullet treatment that many media reports have suggested.

As Dr. Jelinek explains well, this finding isn’t even all that new and in fact was written about by Dr. Swank many years ago in his book.  And Dr. Swank’s work, confirmed by Dr. Jelinek, has already given us a treatment plan, albeit not a silver bullet.

The fact is that for us folks with multiple sclerosis, staying well is within our control, but, sorry folks, it takes discipline and a life-long dedication to changing our lifestyle, starting with our diet.  Controlling what is put into our bodies is the key to controlling our bodies.

Does that sound like a silver bullet?  No, I suppose not.  But step back and think about it for a minute.  Do you really think surgery (as suggested by Zamboni) is a preferable solution to eating healthy?  I suppose there are many who wait for the heart attack and then have angioplasty or stents (or bypass) instead of eating right, but I sure wouldn’t choose that.

And I know that Dr. Swank and Dr. Jelinek’s recommendations sound difficult, if not impossible, when most of us first read them.  Take it from me, a man who had no discipline (75 lbs. overweight), it is daunting at the outset.  But after 8 months of living on the plan, I feel great, have lost almost 30 lbs. (and counting) and, most importantly, I have learned to love this healthy lifestyle and will never go back.

Do yourself a favor: if you are not a Swanker, commit to trying the plan for 2 months.  Really stick with it, see how you feel and see if you really want to go back.  The worst that will happen is that you will have a healthy diet for a couple of months.  The best that will happen is you will become committed and live a longer, healthier life, with less disease progression.  You’ll even help ward off cancer and heart disease (isn’t MS enough for you?)!


This concludes the 62nd 'early' edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 3, 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, June 1, 2010.

Thank you.
Comments for this post.

Tuesday, May 18, 2010

Embarrassing Moments in the Bathroom

As I was telling you about my recent adventures in Switzerland, I left out one event mainly because it deserves a post all its own.  I didn’t tell you about my experience with urinary incontinence. 

While exploring on the Saturday during my trip, we made our way to the Kunstmuseum (art museum).  My first stop was the restroom because my bladder was on my mind.  I was wearing a simple pair of jeans; not much to deal with besides a button and zipper.  However, this was one of those occasions where I couldn’t get everything undone in time to avoid soaking my underwear.  Very embarrassing, I know, but an important topic to discuss none the less.

Read this post in its entirety:

Taking MS On the Road: Urinary Incontinence and Embarrassing Moments

Monday, May 17, 2010

Actemra, Rituxan, Orencia

With nine biologic medications available to treat rheumatoid arthritis, it can be difficult knowing which to choose and how they compare.  Read my previous post - Biologic Medications for RA: The Big Picture - for a run-down of medications including Actemra, Cimzia, Simponi, Rituxan, Orencia, Humira, Kineret, Remicade and Enbrel.

Today, we’re comparing Actemra, Rituxan and Orencia which are medications FDA-approved for the treatment of moderate-to-severe rheumatoid arthritis.

The Immune System in RA

The exact cause of rheumatoid arthritis is unknown.  However, RA is most likely triggered by a combination of factors, one of which being an abnormal autoimmune response.  Involved in the inflammation associated with rheumatoid arthritis are B-cells and T-cells, which belong to a class of white blood cells called lymphocytes.

If the T-cell recognizes an antigen as "non-self," it will produce cytokines (such as TNF-alpha, IL-1, or IL-6) which cause B-cells to multiply and release immune proteins (antibodies). These antibodies circulate in the bloodstream, recognizing the foreign particles and triggering inflammation to rid the body of the invasion.  For reasons that are still not completely understood, both the T-cells and the B-cells become overactive in patients with RA.

What do these drugs do?

Each of these drugs interfere with the communication between cells which cause excess inflammation associated with rheumatoid arthritisACTEMRA (tocilizumab) is an interleukin-6 (IL-6) receptor inhibitor.  ORENCIA (abatacept) is a selective costimulation modulator with inhibits T-cell activity.  RITUXAN (rituximab) is a monoclonal antibody therapy which binds to CD20+ B-cells and causes their destruction.

ACTEMRA, RITUXAN and ORENCIA are intended for patients who have had inadequate response from at least one TNF-inhibitor medication (such as Cimzia, Simponi, Humira, Remicade and Enbrel).  Read RA Biologics: Cimzia vs. Simponi for more information.

Read this post in its entirety:

Sunday, May 16, 2010

More New MS Bloggers - Welcome

Just a few more bloggers and websites to welcome to the MS community.

My Odd Sock by Doug

Obviously, you ended up here because you mistyped…Or, you have too much time on your hands. Either way, you have stumbled upon the home to my humor, my thoughts and my complete waste of Internet technology.
My Odd Sock is my glimmer of inspiration, a creative dream of a lifetime! (Sad isn’t it?)

Tales From the Crip by Kim
Having taken turns writing for radio and reference books--and cranking out an unbearably serious first novel--I'm now exploring the lighter side of life: Having MS.
Stumbled & Standing by River
Parenting with Multiple Sclerosis ~ A single mother's stories of juggling Multiple Sclerosis and Motherhood.
Pip's Blog by Pip
I manage the Berkshire MS Therapy Centre (www.bmstc.org)and have an interest in any issues concerning MS and disability. My interests outside work include travel, sailing, film, theatre and music with a particular interest in guitar which I am attempting to learn!
Book On My MS Blog by Bill

Flowers4MS.com by Angela

MS Multiple Sclerosis Symptoms by Alex

Friday, May 14, 2010

Gratitude Friday

Often I am reminded of the many blessings I have. Sometimes I forget to acknowledge my many gifts and fortunes (no talking money, mind you). Today I am grateful that the weekend is upon us and there is nothing particularly involved that I must do.

My friend Oscar has the right idea. Curl up with a bit of sunshine and relax.


Oscar is the first of my cats to truly take advantage of this comfy cozy spot.

Tuesday, May 11, 2010

MS Spasticity and Fatigue haven't got a chance!!

Last week I went on an adventure, one which involved a passport and long 8-9 hour flights over “the pond.” I traveled from Virginia to Switzerland for a meeting involving other MS patients. During this travel some of the things I was concerned about were fatigue and spasticity, both problems related to my MS.

The welcome dinner for the event did not take place until Sunday evening, but I boarded a plane Thursday to arrive Friday morning. The reason I traveled a couple of days early was to get adjusted to the time difference and to recover from the exhaustion of travel. Plus I wanted to see just a bit of the area.

An ‘overnight’ flight sounds like a great way to sleep on the way over; however, leaving at 6pm from the US and arriving at 8am (in a time zone which is 6 hours ahead of home) is like waking up around 1am on the plane to eat ‘breakfast’ and begin a full day ahead. I don’t know about you, but I don’t exactly function well on only a few hours of sleep (assuming I was even able to fall asleep and stay asleep on the plane).

Read this post in its entirety:

Taking MS On the Road: International Travel, Spasticity, and Hot Baths

Personal note: I was extremely fortunate to be able to find a way to deal with these MS-related issues. Not everybody is so lucky all of the time. Perhaps due to sheer will or the new medication I'm using (Rituxan), who knows, but I seem to have fully recovered from the trip without much residual effect.

I am very ready for next week's Rituxan infusion since my RA has started to act up again and my joints are feeling the effects. I've become a cranky RA person again. I'm told that some patients report even greater benefit after the 2nd and 3rd rounds of medication. That would be awesome, and maybe I will achieve as close to remission as is possible with my rheumatoid arthritis. That would be very cool.

Next week I've got another story related to my recent trip. This one, however, involves a bathroom, soaked underwear, and going commando. You can probably figure this one out ahead of time. ;)

Monday, May 10, 2010

Welcome to the MS Blogosphere

Liberated Too by tellnhelen
I believe the procedure was successful although they could only do the angioplasty on one side. Right now I'm following post-op instructions healing. My eyesight is my first big improvement. About 10 years ago I awoke during the night to a "smokey" room. There was no fire, but my fussy vision never cleared up. Today, I would describe my vision as "HD" high definition. I had forgotten how beautiful the world is---I am so grateful.
Quarter Acre Weed Farm by Karen
I have big ideas but limited energy due to a diagnosis of Multiple Sclerosis in 1986. I grow weeds and other things when it's warm enough to play in the dirt. I have 2 grown children who have turned out to be wonderful adults, a terrific bonus child (my stepson), a new husband whom I adore and a little, buff cocker spaniel. We've added to our family - I'm a mother-in-law, and a grandmother of 4. I consider myself many times blessed.
Puppy's Mum by Carolyn
I write, I breed dogs, I garden. My dogs garden too. It's all good fun! Poetry means a lot to me, and I would love to help new poets find their way into their voice.
Man on a MSion
Live well with the Swank diet for multiple sclerosis.
Recipes to Fight Multiple Sclerosis by Esther

Our MS Journey by JohnnyMac
A caregivers perspective on the MS journey.
Persistent in PA by Janet
Sunday Morning started with a very early drive to Ocean City, New Jersey to meet up with two other liberated women and one almost liberated woman. This was a chance for FB friends to become face to face friends, and do some walking..... Actually we walked the 5K MS walk together. We all made it to the end of the boardwalk and back.. It was also a good chance for us to talk about the different results that each of us is experiencing since being liberated.
AnonyMS
After I was diagnosed with MS in late January 2010, I researched it online. Big mistake. Many blogs I stumbled across were dismal and upsetting, people talking about their terrible symptoms, their anxieties and fears. I wanted to read something positive about living with MS, but the only uplifting stories I found were in pharmaceutical brochures.

Somewhere between the horror and the happiness is honesty. And that’s what this blog is all about. A real person living with a real disease. It’s not all gloomy, and it’s not all glorious. It’s just about getting through it. Celebrating the small successes, and not brooding too much about what sucks.

My MS Journal by Samantha
I was a average healthy 26 yr old woman in 2000 living in NJ with hubby and daughters when I started seeing double and my balance was WAY off. I am stubborn with myself, everyone else was always more important so I didn't complain or worry about goin to the dr. I mean if I had a headache I took a nap, but if one of the kids felt bad it was time to get to the bottom of it. Well finally after about a month of this double vision I went to the dr. With an odd look on his face he told me he wanted to admit me for more tests. I know you don't get admitted for 'testing' so I told him to tell me what he was thinking or I was going home.
Copying with MS
I am middle-aged, madly in love and coping with MS every day. I am hoping to keep an up-to-date blog of my day-to-day living with MS and share how I cope with my symptoms. I will share tips and tricks to getting more out of life and to hopefully motivate others to try to accomplish a little more day to day. I have a great support network here in Toronto, with easy access to various support services. Please feel free to contact me if you have suggestions on coping with MS - I would be delighted to share your tip and ideas with everyone!
My MS Fight by Dave
I am first and foremost the husband of my beautiful wife Julie and daddy to my two boys, Chandler and Logan. After that, my work is usually in the I.T. industry. The purpose of this Blog is to document how I'm doing and / or progressing as time goes by. My wonderful Dr. M suggested I do this so I can track my changes over time. If you are also struggling with MS, I hope you can find some comfort in reading about what I'm going through as you are not alone. If you are just curious, I hope that you gain some insight into what MS is like. No matter what, I appreciate your reading and keeping up with me.
Arterial Excursions by Evan

My name is Evan Thornton, and this is my latest stab at keeping a personal blog. I’ve started many and orphaned them all over the years; who knows — this might be the keeper. The first thing I plan on doing with this one is blogging my trip to Poland in the last week of March. I’m having vascular surgery to try to stop the progression of my MS. To get some background on what that is about, check the Wikipedia listing for something called CCSVI.

Yoga-Love-Multiple Sclerosis by
Diagnosed eight years ago, I focus my life with Yoga and Love (Reiki). During this journey I have become a qualified yoga teacher and Reiki practioner, I specialize in teaching yoga to persons with MS, my focus as well as the physical postures is helping people fall in love with themselves and find their inner-beauty and worth. I truly believe this has helped me become so strong and healthy. I am currently symptom free. The road to this place of health and love that I'm in now has been long and hard. That's another story. Just know, it's included hospitalization, medication, tears, divorce. A whole lot of stories for another time.


Saturday, May 8, 2010

Brahms Intermezzo and the Recital

Tomorrow is Mother's Day. Tomorrow is also the annual Spring Recital for all of my music students. I chose to hold the recital on Mother's Day many years ago for several reasons. One being that fewer activities are typically scheduled on that day; and two, it is a nice treat on a family-oriented day.

Each year I will normally play something at the end of the piano recital. Nothing big or fancy, but just a pleasant way to end the event before we move onto the reception. Yum...chocolate cake!

Since a couple of folks asked about videos of the recital (hi Cheryl and Connie), I thought that a short video of my song might be nice. I wasn't sure how the sound quality would come out but it seems to be acceptable. My hands are hurting today (darn RA) so I hope that Brahms doesn't mind too much any notes which get dropped.

So here it is. Intermezzo in A minor, Op. 76, No. 7 by Johannes Brahms.

video

Thursday, May 6, 2010

Carnival of MS Bloggers #61

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

What to Say, Shingles and MS, Wise Words for the Caregiver

How YOU doing?
submitted from the Better Left Unsaid blog

Clueless Co-worker: Sorry to hear that you’re suffering with your allergies.
Marvelous Me: Uh, actually it’s not allergies, I have MS and am having a relapse.
CC: *dumbfounded face* Ohh, ok then. Well, whatever it is, I hope you get better soon.
MM: *areyoukiddingme face* Thanks.
Thank You, for sending this in Marvelous Me (love the name). It raises a question I wanted to ask. How do you respond to the question “How are you doing?” Personally, I usually just say “fine” even if I’m so dizzy I can’t see straight or the pain in my legs is just about unbearable. Saying “fine” just seems so much easier than explaining everything. One can accuse me of not presenting the opportunity to help me out. Could someone say you’ve just passed up a perfect opportunity to educate someone. What do you think? Do you ever truly tell someone how you’re doing?

Attack of the Shingles!
by Karen at Quarter Acre Weed Farm

For anyone who isn't familiar with these devils, please do everything in your power to keep it that way. If you are over 60 (I'm not) or have a compromised immune system (I do) or if your doctor advises you to receive the vaccination, called Zostavax (he just did), familiarize yourself with information about Shingles and take whatever precaution or preventative available to you.

Shingles is the Chicken Pox virus which lies dormant in your body after you recover from your childhood disease. It hides in our bodies, quiet, smoldering and just waiting for something to trigger it to get moving - clawing its way along whatever nerve fibers in your body it chooses to invade and inflame. So now, my immune system (as it does after the rare occasions I've been stricken with illness in the past) over-reacts, so now the MS is kicking my butt around and I'm really feeling the effects of that. The Shingles rash is better (the pain is manageable until the afternoon) and I'm not feeling feverish and sick all the time. I am getting better. This will pass. I will get on with it.


by Rick at Multiple Sclerosis Caregiving

In Multiple Sclerosis has a History, I wrote, “I didn’t know lumbar punctures have been used for diagnostic purposes since 1913″. I think that piece of the History of MS jumped out at me because lumbar punctures (aka “spinal taps”) give me the creeps.
Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.

After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”
The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, "Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands".)
Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.

I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.

My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.

A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.
Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.

A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”

For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.
I looked to the nurse and she was leaning the same way! And the walls, too!

It hit me. I was fainting!

Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!

Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”

Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!
Fortunately, the room I crashed was empty and no procedures were in progress!
I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.

As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.

She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.

“Can I help you sir?”

“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.

I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.

“I almost fainted,” I explained softly.

“I know,” she replied.

“How are you doing?”

“He’s almost through”, she offered calmly, continuing to sit still on the examining table.

“That’s good. I’m here for you, Baby”, I offered.

“I know you are.”
Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.

This concludes the 61st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 20, 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, May 18, 2010.
Thank you.
Comments for this post.

Wednesday, May 5, 2010

Multiple Sclerosis, Social Media, Wonderful Individuals Who Make a Difference

I am home from a fantastic trip during which I met some amazing people living with and affected by MS. We barely had time to truly get acquainted but it was obvious that these are folks with whom we each want to stay in contact.

Marlo Donato Parmelee, MS vlogger on Youtube (teslagirlm) and author of the book Awkward Bitch: My Life With MS. Marlo is a musician by training (opera singer) who has a band and works for Donna Karan in London a place which obviously values her expertise and energy despite MS. Now I've got to go read her book and prepare to give her a plug for the US book launch event which will be hosted in New York in September.

Birgit Bauer, author and columnist for the leading German woman's magazine Birgitte.de and creative MS blogger at Mein Leben mit MS. As people are still hesitant to reveal their MS diagnosis in Germany, Birgit stands out as a strong example of courage and humor. Birgit's MS has a persona known as Fräulein Trulla, who likes to lie around on the couch and doesn't want Birgit to leave her at home and get on with her life. I love the imagery of Fräulein Trulla pouting and demanding more attention.


Freddie Yauner and George Pepper, cofounders of Shift.ms which if you don't know is a unique online community based in the UK but open to anyone anywhere. Shift.ms is the only online community I've seen which truly offers up services to the younger generation of folks living with MS. Freddie and George are energetic and passionate about helping to facilitate connections among people with MS...and they do this in their spare time while holding down full-time jobs. Plus they have a really cool logo and brought stickers to share with everyone.

Although we had a welcome dinner and started to get to know each other and we had opportunities to tell bits of our stories regarding our online activities, it wasn't until the meeting was over that I felt we started to have a chance to get to know the real people behind the online social media personas. It was obvious that these are just a few of the many amazing individuals who are making a difference to other patients online. We each contribute to that everyday by our simple participation in blogs, on twitter or facebook, on youtube, in communities or message boards, etc.

When I have time to process my thoughts regarding our discussion of how social media is helping patients online, I will share those here. It was such a whirlwind day and we hardly had time to scratch the surface that I hope these thoughts decide to take root and not fly away (darn cognitive fatigue and memory issues).

In the meantime, Amanda Dolan from WEGO Health, which has started an MS community of their own, sent me an email while I was away. Here's her message (in italics) and my response.

Hi Lisa, how are you? I'm working on an upcoming post about MS bloggers and MS Health Activists and I would love to include your thoughts in the post.

Compared to many health conditions, there is a rich online MS community - especially with MS blogs. So, in light of this, I want to compile responses about what got everyone started and what keeps them going, as bloggers. I think this will be really helpful for those who want to blog about their health condition but aren't quite sure how to go about it. The online MS community is one of the most prolific and I think it serves as a great example for those who want to grow their own health community.

Could you tell me - What inspired you to start blogging about MS? What keeps you going as a blogger?

I'm looking forward to your response! Thanks so much,
-Amanda

During the first four months of my blog's existence, MS was discussed very little. I began my blog to focus on health policy, insurance, big pharma, and the extraordinarily leaky safety nets where are supposed to help patients. I ranted a bit (with a balanced approach, of course) and wanted to document what I had to do to obtain the help I needed. The blog was very academic in nature as well.

At some point another blogger living with MS commented on a post and through her, I discovered a network of MSers blogging about their lives and the disease. In an attempt to help bring these bloggers together and to feature outstanding material, I started the Carnival of MS Bloggers which was the turning point in my MS blogging involvement. I officially joined the MS community online with this move and we have grown exponentially since.

Bloggers may come and go, fulfilling their needs at a significant point in time. I've seen this happen with MS bloggers in our community. One thing which keeps me going with the blog and other online adventures is that it is not all about me. I hope to contribute to a whole which is greater than the sum of its parts and certainly greater than the role I play within it.

We (the bloggers, vloggers, forum participants, etc) are like blood cells which flow through a body. If we all congregated around one hand within the body (or greater online community), the rest of the body would die. And if we isolate ourselves and never venture back to the lungs where we find personal nourishment and rest, we would individually die off. Although my travels online may never take me to the left foot, I am comforted to know that others feed that community and that it thrives.

Since I began blogging about my own MS and since opening myself up to the welcoming community of MS bloggers and writers, I find more nourishment and calm in dealing with my own life. I am an educator at heart, a musician by training, and a writer gaining on-the-job training. It is wonderful if others find my contributions to be helpful and worthwhile. It is more important that I find my contributions to be helpful and fulfilling.

This is what keeps me going, especially at those times during which I feel I have nothing to say. Ironically on many of the days where I might simply put up a link to a funny cat video or a cartoon, those are the days where my "peeps" come by and leave a word of support. Life is not all about MS and that is important for all of us to remember.

Thanks for asking,
Lisa