Thursday, November 18, 2010

Carnival of MS Bloggers #76

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

Fall Inspiration, MS Paradoxes, Bowel Management

by Lisa Emrich of Brass and Ivory


Colorful leaves have been falling to the ground for weeks.  Rainfalls have drenched the ground.  The combination has left a gorgeous 'painting' upon my front sidewalk.  The gray stone is etched with images of leaves now blown away on the wind.

Nature is truly beautiful.  In fact, the universe works in glorious ways.

I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.

Read this excerpt from my Monday's post on MyRACentral:
My voice has gotten stronger over the years since disease has moved in.  I used to be a shy person who never spoke up or tried to draw attention to myself.  However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.

Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....
Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.

So Monday I mention publicly that I haven't been performing as much lately.  Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday.  Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment.  I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me.  The contractor asks me to reserve those other dates, just in case.

Thursday, I was traveling out of town to speak on a panel of health activists at a conference.  While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician.  He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra.  I even mention that they have a concert this coming Sunday.

After leaving the conference and sitting on the train coming home, I get a chance to check my email.  What do I find?  The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.

In general with all of the traveling I've been doing, I have been practicing less.  My playing 'chops' are a bit mushy and out of shape (to be honest).  I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.

However, I am needed to play.  I need to play.  I need to be able to play.  I spend some time Thursday night exercising my lungs and chest, breathing into the horn.  Coaxing a warm sound from the cold metal, vibrations traveling upon the air.  Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.

Friday (today) I go to rehearsal, music unseen awaiting me on the music stand.  I find music from composers unknown, horn parts both exposed and transparent.  Any wobbles or mishaps will be glaringly apparent.

But then rehearsal begins.  The lips cooperate, the abs stay strong and firm.  The blend of sounds created by different instruments reminds me of the falling colorful leaves outside.  I breathe in the warm air of beautiful music.  It feels good to my body.  Good for my soul.

I needed this gentle reminder from the universe that I really am a musician, an artist deep down.  Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations.  For this, I am eternally grateful. 



by Blindbeard of Blindbeard's Multiple Sclerosis Blog

Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.

1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.

2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.

Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.


by Diane of A Stellarlife

Constipation affects many people with multiple sclerosis.  I read all the "...most of the people..." symptoms as soon as I got my diagnosis and began my planning.

All my life I had been very regular.  Up in the morning, deposit in the loo, off for a run, home for my day to begin.  Even as a child, up in the morning, loo, on with day.  I took it for granted.  Never imagined anyone else had a problem.  Then I saw a photo of my uncle Arthur sitting on the john, chin in hand and written on the back was: "The Thinker."  My questions about why that was so funny led to my first understanding that for some a daily quick deposit is not so quick.

Then I read "the word" in an MS pamphlet.  Next I read how to avoid this problem, just in case it struck me.  I could understand how easily it might happen, since our ability to move becomes compromised.  When I needed my first scooter, I experienced the big C.   (Well, I DID experience Cancer at that time, but for this story that "C" is constipation.

WARNING GRAPHIC WORDS AHEAD
I no longer found the morning dump so reliable and I learned (after 40 years) that the word my mother taught me was "Grunty", NOT "Grunny."  Imagine my shock and embarrassment.  I had never needed to "grunt" before, but I certainly heard that a lot in my work place restroom.  (I kept asking friends, "Are they SICK?"  But, learned it was expected during most deposits. SHOCK)  So, then I had to take action.

First I analyzed my stools. (I warned you--this is not for the meek.), and noticed they were very dark.  Dark and hard as a rock.  I then examined my diet.  Yes, eating enough fruits, vegetables, whole grains...so I increased them all.  No change.  I swore Mr. Hankey was hard as iron.  LIGHT BULB MOMENT!  My multi-vitamin was IRON PLUS!  I thought that would be good for my MS.   Switched to non-iron.  Started reading labels of all the cereals and food I ate "iron-enriched" UGH!  I would probably explode in my next MRI!!

After a month of no extra iron, my stools returned to normal!  But, moving the bowels was still not quite right.  I remembered reading in Katherine Hepburn's autobiography that she had something called, "Psyllium," every day and she started her day with a bowel movement and dip in her lake.  I told this to my partner, who laughed and explained that was what Metamucil was.

AH!  I had seen many ads for this Metamucil stuff and although I lacked a lake, I would take it every day like my hero-actress (heroine-actor? eesch) Kate.  I began.  Not much happened. I called my doctor, "Could I take a higher dose?"  He agreed that might do the trick.

While I didn't like the consistency or color (orangish) of my poo (I WARNED YOU) I was once again going very easily.  Too easily.  It would come too fast and without warning.  What a messy situation for someone using a walker and unable to run to the loo.  I was starting to get discouraged.  Then, another light bulb---my belief was that simply drinking all the water necessary for the Metamucil dose was way more water than I'd ever drank at one time---what if I upped my water to that level and dropped the psyllium?  My fiber intake had been enough for many years...

It worked.  My bowels now move daily and are of perfect color and consistency.  I can even control what days I might want to hold off (like for doctor appts.) and up the next days water.  Such a simple fix.  I still have a nervous bowel---if I am anxious about something (like a visit from strangers) all bets are off and I can't ALWAYS make it in time to the loo, now that I must use a power chair, slow moving lift chair, transfer---but I am getting better each year at knowing when to start heading for the loo.

Yes, I discussed this with my doctors.  The nasty neuro I dumped, explained how MS effects the bowels and she showed me a poster on her wall that points out all the nerves there--wow!  Who knew?  She offered NO solutions or suggestions. My primary guy was his usual, "That is interesting."  He is still learning.   AND he is open to anything.  He KNOWS he is not God.  He also knows ME and how I experiment on myself.  My current neuro just brushed me off as usual.  She doesn't even see me anymore--has shoved me onto her rehab doc.  (I refused to be scared by her dire predictions for me and refused her drugs of choice.  She hates the sight of me.)

So...water, water, water, every other day 64oz, 32+ in between. Looking back, I really don't think this is MS related for me at all.  As a child I rarely drank and got my water from food, hense, I was over-weight.  When I got a handle on my weight, I began drinking water whenever I felt hungry.  I was not hungry, I was thirsty.  Since moving became difficult, I lowered my water intake without realizing it.  (To avoid extra trips to loo.)

When people tell me they just got DX MS, I tell them to drink more water.  Now, with the idea that iron is backing up across the blood-brain barrier, I wonder if that hurt me.

Too much IRON BAD.  WATER GOOD.  True for just about everyone!


This concludes the 76th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 2, 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, November 30, 2010.

Thank you.

Comments for this post.

Friday, November 5, 2010

Carnival of MS Bloggers #75

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

Courage to Speak Up, Speak Out, and Share

by Ragged Warrior

I was trapped in a toilet today. It was scary.

While out and about at an appointment today, I decided to find a salon for a shampoo and cut. I have been so weak lately that I have been unable to wash my hair myself. Since an entire week had passed since I last washed it, I thought the salon idea was a good idea. Unable to find one of the ‘cheap chain salons’ I found an independent salon that had a sign flashing: ‘walk-ins welcome’. OK, so I thought I would just ‘walk-in’.

The only problem was that it was next to a gym with full length glass windows. Ugh!!

I decided to waddle past the gym with my head turned the opposite direction. I don’t know about you, but I don’t want to be faced with skinny people jumping up and down for no reason. Plus, I didn’t want them to think that I cared if they pointed their finger at me and started laughing. So. I held my head high——and looked the other way while passing the spandex people.

I made my way to the welcome desk and asked if they could fit me in. Little did I know that the halls and booths in this salon were only 1 inch wider than my walker. And nothing could have prepared me for what would soon happen.

The receptionist said “yes, Tracy can help you in a few minutes”.

“OK” I replied.

I entered the salon area and pushed my walker through the aisles knocking brushes, hair sprays, and applicators to the floor. Women of all sizes and shapes quickly took refuge in all the nooks and crannies they could find, while beauticians pressed their bodies flat against their workspace. I pretended I was OK, but the truth was, I was struggling for each step. They turned away from me; perhaps hoping that they would never be in such a condition. People dressed in suits walked out of their offices, only to see me and turn back around. I hate it when faced with my own mortality, how about you? Plus, you know when you are traveling down the highway and you come upon a ‘wide load’, well it was sorta like that. They kept moving ’round and round’.

Suddenly, I wondered if my bladder might be full. You see, when you have MS, things like bladders don’t work like they are supposed to due to nerve death.

Some ladies are unable to control their bladders and have to carry various items with them. My friend has this. There is a special protocol that these ladies follow. First they use their containment buoys, “bam bam” my friend says, placing the buoys around her leaks. If that doesn’t work she throws trash, straw, hair and golf balls at the leak. The last resort is a concrete hat—it’s so hard to mix up the concrete though. When I am with her I remember to bring rags.

Then there are people like me. We have to push on the darn thing to get it to empty. And that is where our story begins.

So, I nonchalantly enter the handicapped stall and secure my walker. I sit down and begin to think about how I will complete this task. I muster up enough courage and plan the attack. I began pushing with all my might when to my horror, the toilet seat changes its axis violently, with no thought of my personal needs.

I cry out to God.

“Oh Lord, please say it isn’t so please God”.

It’s a true disaster, like an earthquake with Niagara Falls and the Hungarian sludge thrown in for good measure. I begin the inevitable ‘Slip n Slide’ down to the floor, my foot pushing a roll of toilet paper to the other stall. I grab the toilet paper holder and inch my way back up the toilet.

“Oh God!! NO NO NO” I cried!! Please help me Lord…..Jesus what do I do”.

This is where retroactive prayer comes in.

I say to God: “lord…..could you please pretend that I prayed about this this morning”?

I muster my strength to assess the damage. “Lord Jesus please help me” I muttered to myself.

“Oh no Lord….please tell me it isn’t on my clothes…what will I do”. Peeling off layers of clothing reveals the truth, it’s everywhere, in the front and back and down a leg. I am downhearted and blue.  What will I do?
I panic looking for a back door that I could escape from—there is none.

Oh, maybe there are…..paper towels………..oh man—it’s the blower type. I can’t get my rear up that high plus it would look suspicious if I was caught.

I’m trapped–I must plan an escape.
I could stay here and ask that they call 911.
I could glide on the wet path to the front desk and tell them I had a phone call of a serious nature.

OR

I could walk with my head held high, and have the girl do my hair. So, I decide on the latter, I will just pretend that nothing is wrong. If I talk enough, smile enough or laugh enough maybe she won’t notice.

So, that’s what I did. Did they notice? I don’t know. Am I going back? Not in a million years!

Did this really happen? Oh yes!!!

From now on, my friend and I will tag team.


from Carolyne's MS Odyssey

You know, it’s funny – most people would not describe me as a person in any way fearful of speaking her mind. In fact, quite the opposite – I am considered, as someone at work once put it, a “calm, funny, and politely pushy woman”. I took that to mean an assertive woman who gets things done! ;)

As MS’ers, we each have to be our own advocates, and speak out about our health, speak about our needs, ask about options, and so on. We must find our voices when dealing with our situations – especially with the medical community. I am well known within my own circle as someone who speaks her mind, challenges doctors if I feel it is necessary, and is generally not afraid to openly discuss any aspect of health situations & improving health with people. OK – I am pretty much not afraid to discuss anything! ;)

That being said, I had another “a-ha” moment the other day when my sister and I were  discussing the peace of chanting in yoga. I had never felt comfortable doing any chanting – but I enjoy listening to others chant. And I only whispered “namaste” very quietly, feeling too shy to speak it loudly enough to be heard. Namaste means “the spirit in me honours the spirit in you”. So when my sis challenged me to speak my inner voice – voice the word Namaste with feeling…well, I froze. The very thought made me tense up. And it made me wonder – why? Why was I afraid to speak loudly enough to be heard?

I pondered this in the woods the other day. SuperMike and I drove down to the south shore, quietly enjoying the brilliant fall colours and each other’s company. At his camp, while he closed things up, I wandered around a bit, and smelled the crisp air, shuffled my feet in the wet leaves, and simply breathed. At one point, I closed my eyes and whispered “namaste” to the trees around me, reveling in the feeling of nature and the sound of the wind through the trees. Did I figure out why I was nervous about speaking out loudly? No. But it struck me – I had not been down in that area of the province in over two years – since shortly before my accident. Wow – had I ever missed it!

Well – I have begun saying “namaste” more loudly – loudly enough so that the people beside me can actually hear me. And you know what? It is actually a freeing & personally charging sensation! Who-da thunk something so simple could feel so empowering? And it is already translating into other aspects of my life – I found myself saying “No – I need my rest” to people at work requesting more of my time than I could afford to give; I found myself speaking up in situations where I had been taking a back-seat roll. I am the kind of person that will put herself last in efforts to make sure those around her are comfortable and happy. Finding my voice, for me, meant finding the voice that says “I need to take care of me, too – and that’s ok.” For me, I had to embrace that “namaste” means also to honour my own spirit… and follow whatever form that may take in the moment.

That’s exactly what we have to do with MS every day, too, isn’t it?
Namaste.
Carolyne


from Kaleidoscope Muff


Since the blog police didn’t arrest me for my last post, I’ll continue with the second part of this verboten subject. Now, while the bladder blues started for me a while before I began to seek answers about my walking, the bowel bouts didn’t begin under I was going through all the testing. At first – here we go with denial again – I assumed it was caused by the anxiety I was experiencing, but as I researched on my own, that item kept cropping up. If I couldn’t discuss my dampness problem, I sure as H%*# couldn’t talk about this one!

My first real ‘situation’ occurred once again in my classroom – I feel at times that I almost lived there! Since I was a child, I had experienced irregularity. No amount of fruits, veggies, or grains could change me, and I just learned to live with it. That sensation increased as the MS progressed, but it was soon accompanied by another doozey – urgency! As I said, I thought it was an upset brought on by worry, but it wouldn’t go away. I’d be teaching, and suddenly I felt as though I would burst. I’d get a teacher to cover, and I’d make a beeline for the teachers’ lav. At that time, I could still move a lot quicker, and I always arrived ‘in time.’ That wouldn’t always be the case, though. Once more, I was on an evaluation trip not too far from home. The school had presented a beautiful opening ceremony; then they took everyone to a nice German restaurant for dinner. The foods were delicious, but ever so rich. As the evening began to wind down, I felt that feeling inside and I panicked. The room was full of people; how was I to escape? Fortunately, one of my team members came over, and I said we’d have to get to the hotel for our opening meeting. Without my asking, she gathered the coats and I could throw mine on and get out quickly. Once in my hotel room, I could take care of the matter. I escaped what could have been a totally humiliating experience.

Those events continued to happen, but fortunately always at home, and I could move quickly enough. Once more it occurred during a field day in my last year of teaching. Again I lucked out in that I could get home in mere minutes, remedy the problem, and get back to the field day. When I was a principal, it happened more and more – after a dinner out with some teachers (I literally had to dispose of my inner clothing, and wrap myself in paper towels,) on a drive home (it was a forty to fifty minute drive,) and once after everyone left for the day and I was alone. After that, I watched everything I ate, and I always escaped the embarrassment that could have ensued.

After I left the work world, I was able to once again time everything, and I was mostly at home. I had to let Hubby in on what was happening, and he often became my savior by helping me out. Now I keep track of when it might occur, and the worst of it seems to be gone – it’s about ten months between events now. I feel lucky that I’ve gotten away without being ‘caught,’ but I realize it could happen at any time. Two years ago, we left a summer party early because I felt things moving quickly, and I knew I wouldn’t make it home in time. I miss out on a lot just to avoid ‘losing it!’

I know that others have probably experienced similar situations, but I often feel so alone with it. I’m a private person in the real world, and I absolutely could never talk about this. However, here in my little virtual existence, I feel I can let it all out and be honest. So this will conclude my discussion, and I’ll go back to babbling about more appropriate topics. Thanks everyone for your support.

Peace,
Muff

from Judy of Peace Be With You


I admire people
whose courage makes them willing
to slay the dragon.

They don’t run and hide.
Jaw set, eyes on fire, they fight.
Best kind of ally.

I am quite grateful
that some of those warriors
are fighting MS.



This concludes the 75th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 18, 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, November 16, 2010.

Thank you.

Comments for this post.

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