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 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).
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.

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.