I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, May 24, 2012

Carnival of MS Bloggers #115

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

Shakes, Battles, and Good Health

by Janie of PasstheMSplease

Several months ago I was sitting at the computer, minding my own business, and the world shook.

It took me a few minutes to realize what was happening since most of the time I am shaking anyway. I got the picture when my dog’s eyes got really big and she howled.

Howling from your dog may not seem like much to most of you, but Buffy NEVER howls. She has a high-pitched, Pomeranian bark, which she uses every chance she gets. Otherwise, except for snoring, she doesn’t make noise. Howling was quite out of the ordinary.

Like most MSers, my hands often shake, legs wiggle and jump, back and arms buzz, etc. I have had times when I was afraid to pick up a glass or try to feed myself for fear of spilling it all over the place. Although this is not an everyday occurrence, it happens often enough to be considered a normal part of MS. When the earthquake happened, it was really strange because I could hardly feel the “extra” shaking that wasn’t coming from something I was doing on my own.

I am on several website with other MSers. It makes me really sad to read that some have quit going out and socializing with their friends. Many of them do not want to embarrass the people they are with by going out to eat and dropping things. Many don’t go to the movies anymore, shopping, or anything in the public.

I know how they feel. I have gone out to eat with my husband and he had to end up feeding me. Although it was a totally sweet thing for him to do, it made me feel so bad. I felt embarrassed, helpless and just wanted to cry. He just ignored everyone around us and kept talking and eating. He is so special!

I have been putting my thinking cap on and trying to come up with things that we can do during our shaky times that otherwise might be hard. I have the following so far, and will think about more:

Shaking spray paint
Shaking orange juice
Shaking salad dressing
Shaking whipped cream

Anyone have more suggestions???!!!

by Lori of 12 December 2008

I'd like to think that multiple sclerosis doesn't have something personal against me. I hate it, but I'm pretty sure that we're not in a fight with each other. My relationship with MS is not a battle. I will not defeat it, just as it will not defeat me. It's a disease doing what it is programmed to do. To call it a fight or a battle or a struggle against some sort of oppressor is to make MS out to be some kind of third world dictator with a huge sense of entitlement and delusions of grandeur.

If (When) I get sick again it will not be because I didn't fight hard enough or because I did not think positively enough or because I didn't go to Poland for "Liberation" or because I didn't go gluten and fat free or any of the other 15 to 20 other "Cures" that have been presented to me in the past three years.

It will be because I have a disease that is programmed to disable me. To grant it human feelings or actions is to, in my opinion, make light of the seriousness of what MS can do to me.

You can't reason, negotiate or put MS into exile or eject it from the community. Doing what is suggested by my healthcare team and taking the daily injection from Big Pharma is not some kind of moral failing. It's working with the best that science has to offer right now for my level of disease progression.

To personalize it, for me, makes it seem as though I am some how responsible for never getting sick again and if I am left blind or disabled or unable to stay awake it is my own fault that I just didn't *Fight* hard enough.

That is more responsibility than I am willing to take on.

Your mileage may vary.
by Cathy of An Empowered Spirit 

 “The body is your temple.  Keep it pure and clean for the soul to reside in.”  ~B.K.S. Iyengar, Yoga: The Path To Holistic Health

When I was first diagnosed with Multiple Sclerosis I was 26 years old and in good physical shape.  I worked in Manhattan and walked 16 blocks from the Port Authority Bus Terminal to my office – in rain or snow or sunshine.  I lived in Weehawken, N.J., a township located along the Hudson River that overlooked Manhattan.  It was a ten-minute car ride into New York City – if by some miracle there was no traffic.  Each day after work, when I returned home to my apartment, I would slip into my workout clothes (no leg warmers or head band!) and pop my new Jane Fonda Workout video into my VCR (for those of you too young to know what a VCR is, it is a video cassette recorder).  The workout kept me in shape, feeling limber and balanced.

I moved to the suburbs after I got married in 1988 and had my son in 1992.  When my son was in middle school I decided to take a yoga class.  I was beginning to feel like my entire body was one tight knot, and the pounds were slowly creeping up on me. I asked my friends for recommendations for a good yoga class, and finally found a wonderful teacher at a local yoga studio. She taught an intermediate class (you know – handstands and all) but assured me she could adapt the more difficult moves to my disability (by then my MS caused my right leg to be totally numb and weakened).  In the beginning my version of the “Downward Dog” (hands and knees on the floor pushing your hips up toward the ceiling with a straight back – it looks like your body is forming the letter “V”) was standing parallel to their full-length mirror with my hands pressed against it, my feet a few feet behind me, feeling the stretch in my calves and feet.  My teacher had great patience with me, and weeks later I finally did a true Downward Dog with the rest of my class!  Once again I began to feel more limber and balanced.

Somehow life got away from me, as it always seems to, with daily responsibilities as wife and mother.  I stopped taking yoga.  Months turned into years without any yoga classes.  I went to a few Restorative Yoga classes at a different yoga studio, but it never felt as comfortable or rewarding.  Now that I am in my fifties, my muscles feel tight and achy all of the time, and getting out of bed in the morning is a daily treat because my legs won’t work the way I want them to – they stiffen up overnight.  I finally – finally – thought to myself that enough is enough.  If I feel like this now how will I feel in ten, twenty or thirty years? It was time to take care of my body again.  It was time to get back to yoga.

A few weeks ago I signed up for a Gentle Yoga class taught by a lovely woman whose class I’d taken a few years ago at my local library.  I nervously walked into the studio with my yoga mat and blanket (dusted off!) and chose my place on the floor.  I began my warm-up by stretching my legs straight up in the air while pressed against the studio full-length mirror, my arms stretched out behind my head on the floor.  After the teacher began class we heard three gentle yoga chimes slowly ring in the air until their sound faded.  We were ready to begin.  I followed my teacher’s instruction for each pose, paying more attention to my breath with every move.  We meditated with each pose, stretched every part of our body and balanced ourselves through deeper breathing. I immediately felt spiritually renewed.  I knew in my heart I was in the right place doing exactly what I was meant to be doing.  Again.

As we age we need to keep our bodies and our minds toned, limber and active.   We need to consider the quality of life we want to have as we grow older.  Three of my grandparents died in their sixties from heart attacks. My mother, like her mother, has arthritis.  Everyone reading this has his or her own set of family genes to contend with.  It may be heart disease, cancer, stroke, diabetes – whatever it may be, we need to think about what we can do right now to try to live a better quality of life. (Of course the reality is that life doesn’t always go according to how we’d like it to, but shouldn’t we try our best to have the best possible life?)  You can consider yoga as I did, or perhaps you’d prefer t’ai chi, or another complementary therapy.  Take a complimentary class first to see if the class you choose is right for you.  Talk to the instructor beforehand if you need answers to any questions you may have – make a list of questions if you need to.  A good instructor should be more than happy to help make you feel more comfortable with their class no matter what your physical needs are.  (Of course please consult with your doctor before taking any class.) Remember, you are taking an important step forward for yourself.  This is a gift you are giving to yourself – the gift of good health.  Namaste.

This concludes the 115th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 7, 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 5, 2012.

Thank you.