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

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

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

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

Sincerely,
Lisa Emrich

Thursday, 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.

Thursday, May 10, 2012

Carnival of MS Bloggers #114

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


Powerful Food, Pseudoexacerbations, and B/B Dysfunction


by Webster of halt stop forget relax

I imagine that many of you with MS deal with the dreaded B&B issue; not the second B - Bladder - which gets lots of attention. We either pee too often, or not enough, or get UTIs all the time, or wet our bed, or our pads, or ourselves. But the first B - Bowel - is the one that rarely gets talked about, and when it does get talked (or written about in neat little pamphlets explaining the various symptoms of MS that may affect us) it leans toward one end of the spectrum -- constipation. Oh, the dreaded bloating and feeling that you have to take a dump, but you just can't.

It doesn't tell you that constipation can be so bad that you need to see a gastroenterologist to find ways to manage it. Like taking doses of various meds, laxatives, eat more fiber, or even using your fingers to pry the stool from you. Oh happy, oh joy. Of course, you know you might be able to go if you just drank enough water to wash things out, but when you do that you can't control the other B [Bladder] (see paragraph one.)

It also doesn't tell you about the other problem: incontinence. Yes, that kind of incontinence. Going without warning wherever you might be. I have known someone to whom that happened - in a high end department store, no less. The sales clerks were very kind to her and led her to a private bathroom so she could clean up, and brought her a change of clothes. Yes, they were very kind indeed. She never set foot in that store again.

They don't mention that in those pamphlets. N'uh uh. And another woman told me that she was in a mall when it happened to her; suddenly it started running down her leg. She said she never wanted to be a runner, but she did that day. She was mortified, and lucky too, in a way, because though  she left a trail of sorts, it just led to an empty parking spot. She retained her anonymity, at least.

What if the problem you have is that you can't feel when you have to go until, well, until it's actually TIME TO GO? And what if that happens when you're in the middle of a dream that starts telling you to get to a bathroom ... any bathroom ... like right now? And you wake up in a stupor, and you can barely move your legs because the blankets were a little too warm and you try to stand up, and you can't? You try and you try and you keep falling back onto the bed, and you start going and you know you can't control it? What do you do? This is no nightmare; well, yes it is, it is a nightmare, and this nightmare is part of MS. This is what happened to me the night before last.

So I look around to see what I have nearby that might save the situation. I find one of those thin blue plastic absorbent lined pads that they use at every urologist appt. [Don't mock me- I think it's foolish to  let all that Dr. office stuff go to waste - so I bring it home; you never know when it might come in handy] This seemed like the perfect thing to use it for - to catch my poop unmentionable bits so they didn't get all over my sheets. I turned to lay on my side and managed to get it beneath and behind me. My sheets were saved; I just lost my dignity as I had to call my husband to help at that point. I had no TP. I couldn't clean myself. I still couldn't stand. I was exhausted. I just wanted to cry but couldn't thanks to my antidepressant.

I needed more sleep, so after DH cleaned things up (he's so good, he takes these things in stride), I took a long nap, after which I was able to (barely) stand, at least enough to use a walker to go to the bathroom, take a shower and get dressed.

MS just keeps getting better and better. I know; you don't have to say it, I was happy to share.

[Here is more information regarding bowel dysfunction.]


by Yvonne Sousa

Kale
Kale is the new black
I cannot put it off any longer. For almost forty years I have been shirking my vegetable consuming responsibilities and now it is time to face them. Don’t get me wrong, I would try to lean towards healthy eating often enough. If I decided to treat myself with a bit of fudge I always went for the pumpkin or cranberry variety to get some of my fruit requirement in.

When picking out ice cream flavor I would choose a vanilla base- vanilla being a type of bean. If went out to eat and was asked which side I would like with my entrée I would pick the French fries to get potatoes (a veggie after all) in with the meal. And, of course, I never held the lettuce, onion, or tomato on my burger. The pickles I would toss aside, you can only go so far on the health kick.

But for some reason all of the hard work above was not enough. Apparently I needed to take a more thorough and active stance on eating vegetables in their natural form. I have been told that they are a necessary part of the diet and eating more of them will help my health and my BMI. But as someone who has taken great pains to avoid them whenever possible, where to begin?

I like the idea of corn- well cornfields anyway. They present such a nice image of middle-America and kids with overalls and ribbons frolicking in the fields. But a super healthy cousin who has a small farm in her backyard (too weird, even for my family, a farm in Massachusetts,) informed me that corn is now the root of all evil.

Seems, she insists, that we Americans eat too much corn and give too much of it to our livestock and that is why we are falling apart. I guess that is good news. It is only the idea of corn that I like, the actual stuff is icky.

Ok, I can handle a salad. I will go with that. But no, it turns out iceberg lettuce is really just a big clump of green water. It is not that healthy, the experts are starting to say.

I was about to give up when a friend directed me to Dr. Terry Wahls website that shows a super good-for-you eating plan, designed especially for people with multiple sclerosis. At first, it was terrifying. Dr. Wahls wants you to eat nine cups of green leafy vegetables a day! That just seemed insane and totally overwhelming.

But I was committed so I continued exploring. One of the veggies she recommends is spinach. Well, I can kind of deal with that. Especially if I use the bagged, dry spinach and load it with dressing in order to pretend it is salad. That might work for me. The wet stuff Popeye used to chug is out of the question but maybe I could accept the dry stuff.

Then Dr. Wahls said something wonderful, something I could totally work with. It turns out that kale is a green leafy full of all kinds of nutrients and good stuff! Wow, I thought only Portuguese people knew about kale.

And I had no idea it was a vegetable! Is Dr. Wahls sure about this? I always thought kale was just a soup additive that you got from your grandmother’s house or your cousin’s yard (oh yeah, a farm, now I get it).
Portuguese flag and ball

This whole time it seems we Portuguese folks were already on the health track! I did some more research and it turns out that kale is the new black, meaning, it is the new super food. And since it is super good for ms’ers, it is the new orange as well. Yay!

It shouldn’t surprise me that my Portuguese friends and family were leading the way in this regard. Didn’t our Brazilian cousins discover last year’s new super food- the Acai berry? Who knows what we will discover next? Maybe the delicious Portuguese pastry trutas are the next super food? Why not? Trutas are filled with sweet potato so there you go! We Portuguese folks have now discovered three new super foods.

What about codfish cakes? The poor cod is one ugly fish but he is a fish and so maybe filled with good proteins and stuff. Hey, I bet he eats kale too so if you eat codfish cakes you might be getting protein AND a vegetable.

red wine
And then there is the wine. I don’t care what the French or the Napa Valley people say, the best wine comes from Portugal. And, research shows that red wine is really good for you. The experts suggest drinking it in moderation but I know a lot of other experts that drink it all day and they seem pretty healthy. They are pretty vocal and animated at least.

I guess my dad knew what he was doing when we visited his homeland when I was twelve and he wouldn’t let me drink American soda. “You are in Portugal and will drink wine like all the other Portuguese kids!” I thought he was being weird. Turns out, he was just worried about my health.

Encouraged and energized, I set out to start my new healthy eating plan and the world fell into place! A nice, hot bowl of kale soup filled with all things good. Vegetables- kale-who knew, potatoes, and a tiny bit of carrots to give the soup some extra color (carrots are no longer one of the best veggies and I don’t want to muck up the soup up too badly), beans-this soup just gets healthier and healthier, linguica- protein, thank you, and salt pork.

I don’t know too much about salt pork- is it a vegetable too? Even if it is not it just adds a bit flavor so how bad can it be? Red wine, some Portuguese bread- hello-grains, butter- dairy of course, codfish cakes as a side- all kinds of health benefit there, and trutas for dessert. Repeat this meal nine times a day. I love Dr. Wahl. This is going to be a cinch!


by Sarah O

Don’t you sometimes have that feeling that you know exactly what your body is going through, what the problem is and where the problem is. Sometimes you really don’t have a clue. But sometimes you just know.


Another one of those weeks when you’re going through so much you don’t know what to control or where to start. Can’t say what triggered it. I do vaguely recall saying that my throat was hurting.  Then it wasn’t. Was going back and forth between the hospital to see an unwell relative. Also took some probiotics to cure a stomach bug. Had a few bad nights of worsening chills. The days were marked with a constant supply of acetaminophen to keep functional. Realized I had low grade fever throughout the day and all the ugly things that come with it. Body aches, dehydration, burning eyes. Sneakily getting worse, my bones started to ache, my limbs became weaker and weaker. “I have an infection.” I can't explain but it felt like something running rampant in my body. Until one day I was sitting at work crying, my bones hurt so bad I felt they would break, I couldn’t put pressure on my legs or carry anything with my arms.  All my other pains crept up with a vengeance.  It was like a symphony, each one trying to out-do the other and make itself heard and noticed. The pins and needles, the stabbing, the aching, the crawling, and the shooting.

I did get a bit scared. It could be the Fibromyalgia, the Multiple Sclerosis, or the Osteopenia.

Of course I went to a few doctors, but we started an antibiotic course on our own.  The white blood cell count was high. Within a few days I was getting back to normal. I slept like a baby and my pains were gone.  I have had many, many bad infections in the past, but never such a bad experience of tiding through it. Okay, so I’ve had some pretty bad infections in my life. They’re really not so hard to wait through. But this time, it was crippling.

Two things: A quick look around the internet shows how MS patients are at an increased risk from infections. The immune system is already compromised and any minor infection can cause serious flare-ups of existing symptoms, sending you hurtling over the edge.

Also, if you look it up, it is suggested that you see your GP if you have Multiple Sclerosis or a weak immune system and develop any Respiratory Tract Infection (RTI). A simple course of antibiotics may pep you right back up. If you want, you may look up detailed studies on the subject; http://www.ncbi.nlm.nih.gov/pubmed/8534384.

As for me, I’ve never been so petrified of coughing, sneezing germ bags in my life. Also, I've started carrying a hand sanitizer, and graciously offer it to as many as will use it !!

[Lisa's note: Here is more information regarding infection and pseudoexacerbations.  When living with MS, developing an infection can cause symptoms to temporarily worsen.  It can be quite unpleasant, but it doesn't affect the course of your disease.]


This concludes the 114th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 24, 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, May 22, 2012.

Thank you.

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

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