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, December 6, 2012

Carnival of MS Bloggers #129

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

Rediscovering One's Self

by Linda of Bright Wings of Summer

Funny days
Warning: This post may use the words poo &bum, and cause outright laughter...

What did you have for breakfast? Sometimes my days are very boring, and not much happens.  Other days...
It started yesterday.  During a fab day out Christmas shopping with a girlfriend I developed a sore ankle - which I naturally ignored - never let a foot impediment get in the way of a good Girls Day Out!  Then later that night, exhausted, and with Hubby just getting home at 6.45, and no dinner on the table - I said - well lets just have waffles!  SO there were were at 8.00pm at night having waffles, and cream and maple syrup - for Dinner!! (At least they were sourdough, and have eggs in them... I won't mention the vast quantities of fat in the butter.  or cream. Not if you don't. )

Anyway - My sore ankle? is still sore... this morning I discovered it has a reduced range of motion.  So what? Well after a quick google check - don't you love google - it has ALL the answers!  I have spasticity in that left foot now it seems. Yucky yucky yuck poo bum.  (I DID warn you!)

So what?  Well I have MS (Multiple sclerosis) (If you don't know what that is go and google it.  Try wikipedia.  I'll wait)...

So - this is my First sign of progression since 2006,  I'm not happy 'bout that.  Which means today is now a designated "rest, stay cool, and no stress day"... Right... other than paying the bills, taking the framed art to the shop, returning a broken frame to K-Mart, and the FN (fortnight) grocery shop?  With a heat wave coming.  Well 30 is a heat wave for me...    Hmmm my list of things to do is huge, and now I need to make dr appointments, and think about treatment for spasticity -which means physio, or doing stretches myself, which will still take more time out of my day - groaning melodramatically -
why is life never simple?  
O.K. need to stop thinking about the list. It's making me stressed just thinking about it.  Right then - No lists. They are evil.  (Except when you read other peoples lists on Aimees List it Tuesday :-).

I Breathe. Nice thoughts. watching the birds enjoy the bird bath.  Oh, and see the cat watching them through the window - cute.  But  I know what he wants to do - go outside and eat them.  Don't think about the psycho teenager Alpha Male Cat who wants to go outside and hunt...or the fact that both the cat litter trays really, really do need freshening up... or the cat hair dust bunnies I know are there somewhere if I look... nope not looking.

Instead Look at the pretty flowers in the vege garden...without thinking of the fruit fly that have already stung the tomatoes, which requires a trip to Bunnings to buy fruit fly traps, or netting, or napalm... and definitely don't think about the 28 spotted lady beetle that you know is lurking on your eggplant leaves having a munch...
Thinking about munching...Hmmm getting hungry - time for breakfast.  At least we have bread (it's only just a little stale), and eggs, and milk (just enough for a coffee).. which I'll surely need if I am to be superwoman and figure out what I can do with the 2 wrinkled apples, and a sad lemon, I can see in the fruit bowl...  Nope can't be bothered with the eggs - there is just enough waffle batter left for 1 more - and THAT's what I had for breakfast!
by Kim of Doc, It Hurt When I Do This...

We cripples have learned a thing or two about the Laws of Physics.  For example, a body in motion stays in motion and a body at rest tends to keel over and plant itself face down on the sidewalk.  That’s one of the easy ones.  Gravity claims us all sooner or later, but it claims a cripple a little sooner than most.  We know that aging is the great leveler, we’re just waiting for our peers to catch up with us. We might need a cane or wheelchair in our fifties, but don’t we feel a bit smug whenever some able-bodied person scoots around us, frightened of his own inevitable decline?  That’s okay, we think, you just keep running, buddy, the day will come when you can’t run anymore. You go, Charlie. 

We cripples have also learned a thing or two about love. How spouses, for example, who love us very much, can entertain a twinge of disappointment when we cannot go for an impromptu walk around town, enjoy the rush of blood in our limbs and the air in our lungs, the quickening heartbeat, the children playing catch in the street and the sun slipping towards the horizon. It is an uncomfortable feeling, disappointment, it makes them feel that perhaps they are not good people for having such twinges. So they push it away.

But these small disappointments can accumulate over time. We are not aware of this, of course, though we do worry that it is being felt. We perform reality checks on an annual basis, we give our spouses opportunities to come clean.  But they reassure us, year after year, that it doesn’t matter, honey, I love you, I’m not going anywhere. And we believe them. We believe them because they dote on us, bring us coffee and cook our breakfast on Saturday mornings. They do all the housework and grocery shopping, open packages for us, chop the veggies for dinner. And they do not withhold affection, we get held and kissed and gazed at lovingly every day. So it must be true. It doesn’t matter. They love us. They aren’t going anywhere.

And yet we have doubts. We push those doubts away and tell ourselves they are of no consequence.  But they infiltrate our bliss in various ways; in my case, in a recurring nightmare. My husband and I are at some event in a large building with a stage. When the performance is over we head towards the exit along with everybody else. The crowd swirls around me and my husband is no longer at my side. I search for him, spot the back of his head a few yards away and push through the crowd in that direction. But I lose him. I cannot see him anywhere. My vision begins to darken and my legs weaken. I hobble along corridors through room after room and decide to head for an exit, he’s sure to be outside waiting for me. By the time I reach the door, the building is empty and I am alone. I step outside into the waning light, hysterical with grief, and peer at the narrow distances, past a now empty parking lot and across a barren landscape, and drag myself in the direction of home. Just before I go completely blind, I awake.

An MSer’s worst nightmare is not physical decline, it is abandonment. A couple of months ago, my husband of not quite two years, my partner for six, my doting, kind, funny, compassionate mate, informed me that he didn’t want to be married to me anymore because he resents my disease. I cannot be his activities companion. He feels like a coward about the future. He cannot be the husband I need and deserve.

It doesn’t matter, honey, I love you.  I’ll never leave you. Yes, he spoke those very words, year after year. Old reliable, he was. Like a 20th century car that gets an annual tune-up by its conscientious owner even though it never needs the points and plugs replaced. The fact that you cared enough to perform routine maintenance endeared you to it in a human kind of way. Unnecessary maintenance, but cute, very cute. I get a pat on the head for being so aware, so thoughtful, so painstakingly dedicated to taking nothing and no one for granted.

What isn’t cute is that annual reality check was never an invitation to placate me. I was not trolling for the lie, I was courting the truth, the whole truth, and nothing but the truth, so help me God. I’m funny that way.  I need to know even if it hurts. He knew that about me, knew that if he wanted out I would want to know about it. I told him that. Honey, if you ever decide that you don’t want to take the whole journey with me, I’ll understand. We’ve all got to follow the path we think will make us happy. And I meant it, every word.

Perhaps it was pride that held him back, or the prospect of getting bad press, I’ll never really know for sure.  Look, there goes that guy who dumped his disabled wife. What a putz. There are not a lot of ways to spin that kind of abandonment in a way that would make yourself a sympathetic character, goodness knows.  Judgments would be harsh, there is just no getting around that. It’s enough to hold a husband hostage in an unhappy marriage for months, even years. Keeping such a grave secret took its toll on him, and when he fessed up to me about his unhappiness, he wept deeply and often while I took in the news; I was at first incredulous, then defiant, bargaining for a delay in his decision until he sought therapy. Eventually, acceptance silenced me. I had just gotten the news that my marriage was dying and I had the grieving ahead of me, but for him it had died long ago and he was simply revisiting the grave with a heavy and regretful heart, only this time, he had brought me along. I had to leave.

He moved me back to my mother’s house where I had lived for twelve years before meeting him. I lay on my old full-sized bed and cried, feeling as though I had been punished and sent to my room without supper.  My mother had painted my old bedroom white after I’d moved in with him. And I suddenly felt as though I had never left that bed, that I’d been in a coma for five years, dreaming that I lived in another house with a husband, two dogs, three birds, a garden, lulled by the sweet strains of marital devotion, and now I had awakened back in my old bedroom, the white walls being the only proof of the passage of time.

A month has passed since the separation. I was sad, grieving, angry, bewildered for the first two weeks, but I’ve stopped crying now. I feel relief, I’m free. Liberated because I am no longer waiting for him, no longer feeling guilty for not being normal, no longer afraid that I’ll disappoint him. The worst has happened, I’ve been abandoned because of my disease.

But it is not the hardship that I feared it would be. I missed him for a while, for two weeks, but then I stopped, and that in itself troubled me. I realized how distant he had become for the whole previous year and how easily I had made excuses for him. He was tired, he worked two jobs and had other responsibilities besides. He was in a twelve-month rehab program and I figured I was there on a rain check for a year, I’d wait for him to finish it and then I’d get him back again. So I waited. I championed his progress, felt proud of him, in love with him, desirous and lonely, yes, but he was going through a tough time and I should try not to act too needy. I was very patient. I thought we were happy. I thought I was happy, but I wasn’t. And the fact that I stopped missing him so quickly saddened me, it meant the relationship had been over for me, too, and for quite a while. I simply hadn’t owned it.

I saw a therapist immediately, before I left my husband.  In my first session, I told my therapist that I was suffering from low self-esteem, that my self-worth was in the toilet. After all, I’d just gotten dumped out of a marriage because I was not whole. But by the end of the session, he told me a startling thing:  I possess very high self-esteem, I just think I don’t. We call that cognitive distortion.  

The distortion, it seems, came about when I got the bright idea to abandon my expectations. One should have expectations in a marriage, who doesn’t know that? Apparently, I don’t. I didn’t expect my husband to want to share activities with me, explore the depths of intimacy. I didn’t expect him to make plans with me for the future, be my health advocate in an emergency, I didn’t even expect him to want to be married to me forever.  Gratitude had displaced any reasonable demands I might have made. Gratitude so deeply ingrained that I felt I hadn’t the right to intone: “Please, sir, I want some more.” After all, I wasn’t a starving, abused orphan in a workhouse. I was well-fed and loved. What more could a middle-aged cripple want from a new husband?

And I had my own pride to contend with, my own fear of bad press. The odds were against us, so many women with a chronic disease or catastrophic illness are abandoned by their husbands. I didn’t want to become a cliché. Having expectations certainly wouldn’t tip the odds in my favor. And so I never protested when he wanted to stay overnight on his sailboat Friday nights, join a rock band, rehearse two days a week, and gig on the weekends. He had his freedom and I retreated to my office, seeking refuge in my online patient community of friends. There, I developed the intimacy my marriage lacked.

Now that I am single again, my friendships continue to nourish me, I still have the intimacy. And I’ve made plans to find my groove again as a writer, I’ve long neglected a book I started writing several years ago.  But what continues to haunt me is the notion of expectations. If I ever consider marriage again, I must bring to the table a list of expectations and a promise to myself that gratitude shall be reserved for acts of kindness only and never become the sole tenet of my marriage philosophy. The prospect of such a thing seems daunting right now, in fact, it upsets me to think about it.

The fact that it troubles me to imagine such a testament to self-worth means I have some healing to do yet.  And heal I shall.  My husband has given me a gift I would never have asked him for: I’ve gotten my whole self back, intact, for the most part. And I won’t squander it.  Not ever.

This concludes the 129th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 20, 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, December 18, 2012.

Thursday, November 22, 2012

Carnival of MS Bloggers #128

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

from the life well lived blog

I was a bit surprised when J suggested maybe A was ready for some more adult prayers. When asked, she meant the more adult prayers where we tell God what we want or need. I was kind of taken aback. I haven’t prayed that way since hearing a Riverdale Baptist high school soccer coach lead his team in prayer before playing us by asking God to grant them victory, and then leading them in a public confessional to try and explain why God had let them lose to us.

Somehow keeping my relationship with God one where I can simply be thankful for all I have been given seems more my speed. If my wife or kids ever ask for an older prayer, I suppose I could lead them in a “Pater Noster” or an “Our Father” with or without the “for thine is the kingdom...”

Until then, I will keep my prayers to what I know.
  • I am thankful for every day spent with a family who love and forgive me.
  • I am thankful for the resilience of mind and body my kids show daily.
  • I am thankful for a home in which to be comfortable.
  • I am thankful for the love of our three dogs and the riches they imply we have.
  • I am thankful for a job on which I am still challenged to learn something new every day.
  • I am thankful for friends always there in time of need.
  • I am thankful for the advances in medical technology allowing me to even consider running a half marathon in a couple of weeks after seven and a half years of MS.
  • I am thankful for every sunrise and sunset.
  • For every beginning, middle and end I witness,
Thank you.

by Lorraine of I'm a Scatterbrain

These are giant community compost bins; empty, they each weigh half a ton. This is a little ways downtown from me... and on the river, so also three "long" blocks away from me.

I realized the the MS society fitness thingys began at the start of October, and this time I can't blame my laxness on their SHITTY web site.

Even so, these things run vaguely once a week, with no clear reason why some weeks are off, to it is a fucking pain in the ass to enter them all in Google Calendar. Yes, I love my abductors, total Stockholm Syndrome, and Google knows all my teensiest bits of data.

This is an example of my occasional yearning to have a smart job again, I would like to make the MS web events be "google-calendar" accessible. I thought I could go back to web-D when I was unable to tend bar because of MS, I thought, well, I'll just teach myself the new web coding just like I taught myself the old coding.

This photo (left) is by my downstairs neighbor, Eak the Geek.

The next day he, Jennifer Blowdryer and I went to the Key Food to get food out of the giant dumpster (they couldn't give it away in case it was rotten, but tons of it was frozen, anyway, I didn't want to eat, just see the spectacle). I would like to train myself out of saying wrong things, like "tons," or "a lot," but in this case it seems fitting?

He was away at law school and I wanted to get ahold of him for some co-op reason (I was on the board of directors, ha ha, back then), and HE the reason I first went on Facebook, because where ELSE could he be? ... Well, myspace wasn't quite dead yet.

J. B. and  I ended up being foul weather friends and having too much wine and going to see all the trashed areas in our tiny neighborhood.

The blackout here was from Monday to Saturday, and we were up and down the stairs between our two apartments for silly projects like prying open an old boom box to add batteries for radio or what...

what else??? there was so much nothing we did in the dark together.

Actually, I had more social life after the storm, in the dark, than any time since Charlie...

Charlie called me several times before the storm and after. He still calls me Hon and Babycat, which makes my spirits SOAR.

Not for long of course, and when my mood crashed it was very easy to brood in the darkness about a-a-a-all the bad things in life. Like Indian Point being not that far away, and right after Japan, no wonder I dwelt.

I told EVERYONE that I was nowhere near the storm, but today I put this on my brother's Fbook -- Hey T, this was nine "short" blocks from my place (don't tell Mom or Dad, BWAH ha ha ha)


This concludes the 128th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 6, 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, December 4, 2012.

Thursday, November 8, 2012

Carnival of MS Bloggers #127

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

The Colors of MS
by Ashley of MS Run in US blog

Every day is a brand new day and an opportunity to make of it what we want.  Every day we’re faced with thousands of choices; what to wear, what to say, where to go, what to do, how to react, how much to spend, how much to save, when to indulge, when to restrict, how to love, etc.  Data suggests that adults make nearly 35,000 decisions every day.  The idea of it can be staggering and intimidating.

colorsRecently a client shared with me a story about himself when he was young.  In less words then the story should be told, essentially as a youngster he waited years for his family to have enough money to purchase the 64 pack of crayons for art class.  Until then they were only able to afford the 8 pack of standard rainbow crayons.  A few years later after he had gotten his use out of the 64 pack of crayons he decided to pass them on to his younger sister.  Before giving them away he notice, upon inspection, that he had only used the standard 8 colors regularly.  He so highly valued the other crayons that he was “saving” them.  He realized though that he saved them so much he didn’t even use them!

From that day forward he developed a motto: “Use all your colors!”.  This is a motto he applies to all areas of his life, of which his colors are his abilities. Whether it be for work or pleasure he commits to using all of his colors/abilities.

Obviously this concept has to be applied within reason.  We can’t just use all the money we have in one day or we’d find ourselves in a bit of trouble by the time the bills came.  But what if we applied this to abilities that we do have in plenty: love, compassion, endurance, forgiveness, kindness, patience, humor, drive, integrity…  These are all things that are given to us in immeasurable amounts.  There is no end to the amount of forgiveness we posses.  There is not limit to our kindness.  We impose our own limits on these attributes.

What if for today and beyond we don’t limit our abilities to do these things? What if we forgive until we can’t forgive anymore, and then we forgive more?

Remember as you go throughout your day that you have a box full of colorful qualities that you can use to brighten your world.  Use your colors.  And when you’re tired of coloring your world, color some more.

“Happiness is like jam.  You can’t spread it without getting some on yourself.” -Unknown

by Caroline of The Girl With MS

Sometimes this is not very easy to do, keeping your clothes on, with MS. Summer months are brutal and just hiding out by the AC doesn't cut it for most folks. Planning ahead with cooling devices is best but sometimes we simply wake up in the "red zone", inflamed and sensitive, a red flag for a relapse.

When I'm in the Red Zone the first thing done is to rate the shade of red. Am I getting a little pink or have I fried myself?

And then ask myself why?
  • What did I do yesterday?
  • What did I eat?
  • What was the temperature?
  • How did I sleep?
  • What's on my agenda today?
What can I do now to move into the "Blue Zone"?

Hanging by water is a great option. Pools, rivers, lakes, oceans provide instant relief from warmer temperatures. But not all of us have this opportunity nor can we often remove our clothes to cool off so improvise we must.

Quick tips:
  • Cool shower. Even Luke warm is fine. Just hop in the shower for instant cool down.
  • Wet bandanna around cooling points: neck, wrists, ankles
  • Ice water, drink it, pour it on your head, pour it down your shirt!
  • Wet shirt, cool off body. Huge help in the Sahara when my guides put my shirt in the crocodile infested waters so I could cool off. They don't have ice on safari in Tanzania, FYI.
  • Juice it! With Cooling, anti inflammatory and detoxing foods such as cucumber, apple, pineapple, etc.
  • Visualize the Blue Zone:
Ahhhhh....feeling cooler already. Now, not to mess it up.

That means to watch diet and activities all day:

  • Cooling foods
  • Activities by AC
  • Water, hydration
  • Reduce stress and get those items checked off to-do list
  • Have fun brainstorming on some new projects
  • Find balance
  • Be at peace
  • Mellow in the "Green Zone"
So, How do you deal when you're in the Red Zone?

This concludes the 127th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 22, 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, November 20, 2012.

Thursday, November 1, 2012

Carnival of MS Bloggers #126

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

Happy Belated Carnival
from the Newly Married Lady
Rob and Lisa

(a few select photos from the big day)

by Dr. Yumi of Universal Balance Consultations

OK, here’s Part II of my article on reducing the risk of relapse after delivery. Remember in Part I, we talked about how much your risk increases after delivery, and how important rest is to recover properly and avoid relapse. We also included some tips to make sure you get that rest.

Nourish your body for post-delivery recovery
Next is diet. I can’t stress the importance of proper diet enough. Not only will you be providing nourishment for yourself (and the baby if you’re breast-feeding,) a nutrient rich diet with some selected items will actually speed your healing process. And by recovering and strengthening the body, you’ll be reducing your chances of relapse.

“So what foods are best to nourish, and promote healing and strength after delivery?”
As soon as you get home from the hospital, you should make a big pot of Recovery Soup. It should have the following ingredients:
  • Lamb, pork kidney or carp (one or more)
  • White spring onion or white scallion, (the white parts are especially important)
  • Ginger (freshly crushed or cut into thin slices is best)
  • Dong quai (Angelica sinensis)
After that, just add more of your favorite vegetables, salt to taste and maybe some light seasoning. But you don’t want to use any type of spicy ‘hot’ seasoning, (chili pepper, cayenne pepper, and the like.)

There are other herbal supplements you can use to recover and nourish if you’re interested. But the Recovery Soup will make a great base to start from. I recommend you have a bowl or two each day for at least one month after delivery, or as long as you’re breast-feeding.

For the remainder of your diet during this period, you want to be eating as many nutrient rich foods as you can, which means include fruits and vegetables in all your meals. Also, stay away from fatty meats and junk food. I shouldn’t have to say here to avoid buckets of greasy fried chicken and value meals from the local fast food joint. But I will. Avoid them!

These should be a very last resort; so maybe suggesting specific dishes you’d like to your friends in the cooking rotation would be a good idea. (See Part I) You want to strike a balance between healthy and tasty.

With the combination of rest and a nutritious diet, you should be well on your way to recovering from your delivery, and thereby reducing the chances of your symptoms flaring up. If you’re not interested in the diet, then the best thing to do is to just rest as much as possible after delivery. And avoid exerting yourself at least for a month or two. This will allow your body to heal. But I highly recommend you supplement with your diet.
Great, now you know how to regain your strength and avoid relapses. But you may still be wondering what it is that makes you more prone to relapses just after delivery.

What’s the deal with pregnancy and relapses?

According to oriental medicine theory, the kidneys are a major energy center, and govern the brain, back, spinal cord, bones, and bone marrow. The kidneys also store prenatal energy and control birth, growth, maturation and sexuality, so they’re one of the main organs that support pregnancy.

MS patients have lesions in the brain and/or spinal cord, which means your kidneys are probably already weak. (The kidneys could be the original problem, or they could have been weakened by some other imbalance.) Nevertheless, pregnancy, delivery, breast-feeding, sleep deprivation, overexertion, or any kind of mental stress, further burden the kidneys.

When the kidneys are weak and overtaxed, the risk of relapse increases.
You’re particularly at risk if you’re breast-feeding because your body is still weak from the delivery, and your kidneys are providing nourishment for both you and the baby. This especially drains your kidney energy, so you might want to consider switching to formula after a month or two. However long you breast-feed, though, be sure to have the Recovery Soup for the duration.

You just don’t want to take unnecessary chances. Everything about your pregnancy and delivery is putting a strain on your kidneys. So it’s important in the first few months after delivery to properly heal and allow your body and kidney energy to strengthen.

All right, so now we know what’s going on with your kidneys and why women with MS are more prone to relapses. We’ve also learned how we can avoid those relapses. By following the guidelines I’ve presented, you can rest easier knowing you’re taking appropriate steps to maintain your health.

I hope this information has been useful to you and will help keep your own pregnancy episode-free. Especially if you have MS, you need to take good care of yourself, so you can in turn take care of that precious little person who’s just come into your life.
I’ve enjoyed presenting this info here and look forward to discussing further MS topics with you. Thanks for your time.

Dr. Yumi Izumisato

This concludes the 126th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 8, 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, November 6, 2012.

Thank you.

Thursday, October 11, 2012

Carnival of MS Bloggers #125

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

Synchronicity and Balance

by Lisa of Brass and Ivory: Life with MS and RA

Today's date is 10-11-12.
On its own that's pretty cool.
But knowing that it's only
9 days until our wedding is even better.

10.11.12 + 9 = 10.20.2012

by Mary of Travelogue for the Universe

on Steroids.

Another Concept
referred to  by
Edgar Cayce
and other mystics
and dreamers.

Do you ever
open a book and find
it is exactly where you wanted to be?

Do you ever get somewhere and find something
you needed and yet were not looking for it?

Do you ever paint a picture,
What is it that
you are trying to say,
and when you are done,
You see the results,
so obvious,
a perfect result,
then you show another person
and they are affected,
with the emotion you had,
brush in hand, struggling to find the right
colors, strokes, tempo,
and you see the message as a thread
between you and another person,
and you see how special it is
that this whole experience even happened
as it was meant to be,
The Timing felt so right,
That is

by Alison of Beauty and meaning in a broken world

7 things that I hate about putting my medications for the week into my pill box:
1. It takes a long time.
2. It reminds me that I have a lot of medical problems.
3. There are too many tablets and the lids hardly close.
4. There is a lot to remember and keep track of. Do I need a refill? Will I get it on time?
5. They are small and fiddly and I keep dropping them.
6. They make me dizzy, unfocussed and unable to have more than 1 glass of wine.
7. They remind me that I have MS.

5 things I love about my tablets:
1. They cheer me up.
2. They reduce my pain.
3. They make it managable to go out in public.
4. They let me sleep at night.
5. They help me survive.

This concludes the 125th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 25, 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, October 23, 2012.

Thank you.

Thursday, September 27, 2012

Carnival of MS Bloggers #124

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

MS Hug, Montel Williams, and Massage
by Estizer of MS Open Mic

 I read a blurb in the NMSS Magazine that stated African Americans with MS are less likely to use any of the disease modifying drugs than people of other races. That got my attention although I do think its a matter of personal choice,I choose to do drugs! I set out to find the nearest African American support group to check this out. That was 1.5 hours away in Philadelphia.  Like any other group I’ve come upon, I talked more than anyone in the room. Except this one guy, he was pretty cool. I brought up the article and as it stated most of the people in the room were not on medication. But what the article failed to address was how many people in the room had insurance or co-pay issues.  As I looked around the table I was far more concerned with the level of obesity and a host of other health issues that must only complicate MS.

Everyone went around the table and talked about what bothered them last month and then it was the cool guys turn)At first he had a burning pain in his leg JUST LIKE MONTEL but when Montel said it I thought it was totally BOGUS DUDE and he just wanted to smoke some weed, but now I believed him! (Sorry Montel) Next the cool guy said he had an MS Hug and EVERYBODY in the room was like “oh yeah, oh yeah…they’re the worse right? Hahaha, oh yeah” EVERYBODY except ME! All of the sudden I felt like I forgot to put my drawers on. I just sat really quiet so nobody noticed.

Now… how cool was I when two years later I felt an intense tightening around my chest, along with a pain and burning sensation. I clutched my chest… awashed in fear! This was it! Did I go to the emergency room? Because these were all the signs of a heart attack. I DID NOT. Why you ask? Because this was an MS HUG like the cool guy at the support group had described…just like it…right…everybody said so, right?

by Eddie at Multiple Stupidness

Montel Tells

When I first became ill, I scoured the internet for information on MS. Of course, this included YouTube, and there are probably hundreds of videos there concerning MS. Some are informational, some are testimonials and some are interviews or excerpts from programmes. Some are depressing and misleading, some are interesting and informative, and some are absolutely inspirational.

One of my favourites is the interview on Larry King Live of Montel Williams. I hadn't heard of him before I saw the interview, but he is an American talk show host who himself has been diagnosed with MS. As I watched it, it was wonderful not only because here was a man describing very, very similar symptoms to my own, but he was able to express things about MS that I felt, but had never been able to adequately verbalise.

An example of this is the injection I take every other day. I hate taking my injection. I hate it! Why? It doesn't hurt particularly. It's take less than five minutes, and I don't really suffer side effects from the betaferon like I did in the beginning. So why do I hate taking it? Montel Williams explains it beautifully, and very quickly I started directing people to these videos if they really wanted a clear, articulate expression of what MS is like and, because my illness felt so similar to his, a little of what my experience is like.

[Please go to Eddie's blog to view the videos.]

by Caroline of the Girl with MS

Many folks have asked about the benefits of massage for folks with MS.

Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?

Massage! Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.

Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.

The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.

One thing we can do to remove toxins is to have a massage. And what a treat it is!

Massage seems to help in several areas: spasticity, pain, fatigue, poor circulation, and mental wellness...ahhhh.... The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.
"Massage and the underlying disease of MS:

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:
  • relief of anxiety and depression 
  • improvement in mood, self-esteem and body image 
  • increased ambulation and improved physical and social functioning. 
The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation." 
So, keep up the massage and add some strength training or yoga to keep those muscles strong!

Lance Armstrong's LIVESTRONG.com talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.

Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage.
"For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." 
They get it. They get the disease and seem to understand what we need to feel better.

Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:
"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. “If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect.” By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. “One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement."
Wow! This is some great stuff. A must read for all with multiple sclerosis.

The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:
  • Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly. 
  • Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries. 
  • Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.
  • Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet. 
  • Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain. 
  • Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension. 
  • Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain. 
One of my favorites? Lymphatic massage...you can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?

This concludes the 124th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 11, 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, October 9, 2012.

Thank you.

Thursday, September 13, 2012

Carnival of MS Bloggers #123

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
FDA Approves MS Pill, MS Inconvenience, 
and Anti-inflammatory Foods to Help MS

from Lisa Emrich of Brass and Ivory: Life with MS and RA 

Late Wednesday afternoon, the FDA announced that Aubagio (teriflunomide) has been approved for adults with relapsing forms of MS.  Click through to the original blog post to find the FDA announcement, a Reuters news report, abstracts for 12 academic studies published between 2006 and 2012 regarding teriflunomide and oral medications in development for MS, and the Genzyme press release regarding the FDA approval of Aubagio (teriflunomide).

from Stax of Multiple Sclerosis & Me

i hate being sick; having MS!!

that's all; no funny stories, no lamenting or feeling sorry for myself.  i just hate it; it's a pain in my ass and a big inconvenience.

from The Girl With MS 

Nutrition will allow you to Thrive with MS! Anyone with MS should know what cooling foods are and how they affect the body and the disease.

My research began over ten years ago. Three different Chinese medicine doctors diagnosed me as being kidney yen deficient. While investigating what these doctors were telling me, I found that many of the symptoms for this 5,000 year old Chinese disease were shockingly similar to that of modern day MS and many autoimmune diseases for that matter.

When asked about the cause the Chinese doctors all responded with "Western diet and lifestyle". The Western diet contains many processed and falsly seasoned foods not to mention excess fat. Western people are known to skip meals, eat on the hoof and gorge on salte, fat and sweets with no care about their bodies.

According to Chiness Medicine there are different kinds of food: cool, neutral and heating. Depending upon our makeup and health dictates which foods are best. For an inflamed person with MS the cooling foods are desired.

(FYI - Chinese Medicine offers much more than discussed here where it's been crudely simplified. Resources linked below)

So what foods cool off the body and help my MS?

Some obvious food such as cucumbers come to mind. Apples, bananas, citrus, clams and many more. But what about sushi? Have you ever eaten the eel? Unagi? One summer there was a heat wave in Japan and a subsequent shortage of Unagi due to its cooking effect on the body.

Imagine using foods to cool off and saving that electricity bill!

Information about cooling foods and nutrition for MS has grown significantly these past ten years. Here are some places to check out:

A good primer on Chinese Medicine and food classifications

Spreadsheet of foods by class from DocStock

Heating vs Cooling Foods. A review

Food as Medicine - a look into Chinese Medicine. (downloadable PDF)

Chinese Food Pyramid for Dogs and More

Nutrition will allow you to Thrive with MS!

This concludes the 123rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 27, 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, September 25, 2012.

Thank you.

Wednesday, September 5, 2012

Carnival of MS Bloggers #122

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Sleep Disorders, MS, and Multipurpose Sticks
from Thomas of BiPolar, MS and still as handsome as ever 

Take a look at this picture:

On the left you see a very dilapidated golf club, a one iron of some ancient make probably used by the Morris clan (golf joke) and left in a garage sale.  The paint wasn't on there originally.  Just an added touch to being stuck in a garage by a guy who found that he could not play golf, but could hit a ball with a stick and follow it around.  I just didn't feel the need to pay some stranger for the use of their land to hit the little ball and follow it around privileges.

The club has a MS use though.  A few times a week I grab the club, stand in the grass, assume the position, and take a good swing.  If I remain standing, its a good day.  If I come down goofy or start to tumble, this is not a good day and I should be careful.  So while my one iron and its friends in the bag sitting in my garage may never see a golf course again, they do remind me of another day when I could freely play a sport I sucked at.

Now as for the stick in the middle of the photo, that's my new walking stick.  On Friday, Jackie and I went to the Southern Vermont Craft Fair in Manchester, Vermont.  This has been a tradition for many years and we'd stay at local B & B's and go to the Craft Fair at the rolling lawns of Hildene, the former home of Robert Todd Lincoln and his family.  Highly recommended. Well, the bed and breakfasts closed.  And this year the Craft Fair moved to the other side of Manchester.  Ch-ch-ch-ch-changes, said Mr. Bowie.

Time to turn and face the strain.  The Craft Fair is in the midst of a field, a Vermont field, meaning rocks and little gullies and tiny holes, and if you have any problem with coordination, and I believe lots of MSers do, here was a challenge.  If I held my wife's hand I could move pretty well, going from booth to booth, but the moment she stopped to look at jewelry or whatever and I continued on my own, any quick turn or "excuse me" step out of the way might send me reeling into any booth anywhere, and I'd find myself staring at a piece of crockery that would only set me back three hundred bucks.  I'd mumble some excuse like - "Astounding work. I must remind the Queen." - and move along, find Jackie and head out.

We got a drink and hit the food tent where free samples were distributed.  My favorite was the rye whiskey (butterscotch in a paper shot cup).  When we left the food tent, we headed out to the tents off to themselves on the other side of the field.  There was the temporary abode of Debi Hitter, purveyor of custom made walking sticks (Eagle Scout sticks a specialty).  I ended up with one of the those sticks, and used it successfully to move around the craft with slightly more balance.  The stick also opens up new possibilities for career options:

1. Religious leader  (i.e. Moses) - see the staff in his right hand - by the way, the statue is in Washington Park in Albany NY, and this shot was taken during the Tulip Festival held each May.  Let's see, I might  ask my former employer to "let my people go", but they would, and then try and run the Department of Social Services with trained monkeys  (a lot easier to pass out bananas than support).  And where would I lead my people anyway? Across the street for lunch? The parking lot?

2. Robin Hood - there's that scene in every Robin Hood movie and parody from Mel Brooks to Daffy Duck where Robin and Little John parry with quarterstaffs, like this.  See maybe I could become the local Jedi Knight for the Luther Forest area.  There must be an opening somewhere.  I know my first enemy, the chipmunks in the back yard. 

I figure a swing or two with my new Jedi stick (I can make the noises) and those little buggers will head off into the Endor forests.

3. Join one of those German groups with the leiderhosen, and the sticks with the jingle bells on them, but I'd probably be asleep in my chair by the second song, so never mind.

I'll try to come up with other stick uses (open for suggestions).  Right now I'll use it on tough walking days.  It's better than a wheelchair.  It's a reminder that tough days may be ahead, but I can handle them in style.  The lady who made the stick is also interested in providing others to the MS group.

From the update pile: I've got appointments with both my new psychiatrist and neuro this month, and just need to step away from my old psych (who I noticed in the newspaper today didn't pay his taxes and got slapped by the Feds), and do my paperwork to transfer stuff. Best of luck to my old neuro as she moves to New Jersey.  I found that out through a meeting of the minds of the two people who showed up at the support group Thursday.  I could not have met a more gracious lady, and I hope the group works out.

from The Girl With MS

Why can't we sleep? There is no real reason other than MS as to why I have sleep issues, but it's amazing how I can mess myself up!

Here I am in the beautiful Eastern Sierras listening to Bishop Creek as it riffles by below the cabin. My current view:

On vacation but with a few minor projects and tasks to tend. But not enough to keep me awake all morning. The first night I was exhausted and fell asleep at 9pm when my head hit the pillow, awaking at 4am, which did constitute seven hours of sleep. But I didn't want to be awake at 4am.

So last night I aimed to stay up later thinking I could get seven hours and wake at a reasonable time. Now as the day progressed, after some time in the warm Bishop sun, some fly fishing and some creative cooking, I thought to myself, you are at 8,500' altitude, "Go fill up your water glass". Yes, I thought this often, every time I opened another beer.

I even thought of the magnesium supplement, magneleveux, in my bag, as I opened another beer.

Daydreaming, sketching, visualizing, I had a fun night, as I opened another beer.

Exactly what NOT to do with MS!

Sure, I stayed up until midnight, then woke up at 4:38am. Bing! And I'm awake. The need to pee and the incessant leg spasticity kept me squirming all morning long. The 42 degrees winding through the window bringing with it the sound of the creek was my saving grace. Ugh. I know better. I did take 1/2 a klonopin and a melatonin before going to bed. And another half of klonopin in am when couldn't fall back to sleep.

Three glasses of water later, a banana, magnalevure and some Shen Trition, and this Girl with MS is finally feeling a little better.

What I could have done:
  • Enjoyed the great healthy dinner we had (micro greens, salmon, veggies)
  • Dry brushed my legs
  • Took a not to hot bath
  • Read a book
  • Wrote in blog

Yes, these are all better choices then the one I made. So, live and learn. Let go and let God as they say.

This all inspired me to do some researching on sleep and MS. Here is some of what I found:

This is a great summary from WebMD of what can cause folks with MS to have restless sleep: Multiple Sclerosis and Sleep

Life aspects that can effect sleep patterns in those with MS:
  • Stress
  • Anxiety
  • Eating
  • Drinking
  • Nutritional health
  • Age
  • Physical activity
  • Mental activity
  • Spasticity
  • Depression
So, how do we deal with this sleep issue?

Time to change our habits!

Food suggestions:

Small bananas are good: (they still contain sugar so small is better before sleep)

"Combining the amino acid tryptophane with carbohydrates as well as calcium and magnesium can help your brain relax and your body nod off to sleep."

And the magic of oatmeal can make the difference of a more restful sleep pattern:

"Calcium has been proven to help the brain use and process tryptophan, while magensium, a natural sedative, acts as an "assistant" to calcium helping it to be absorbed into your system."

Check out more Foods to eat before bedtime from The Health Central Network

There are other things too. This is just a start!

There is Proof that sleep patterns affect MS!

If you've been having sleep issues and feeling more fatigued, there is proof that the two go hand in hand.

Check out this study: "Treatment of sleep disorders can improve fatigue and other clinical outcomes in MS."

“@MSBuzzNews: Multiple Sclerosis Research: Treatment of sleep problems reduces fatigue: Epub: Côté et al. Impact of sleep diso... http://t.co/f68LV6M8”

Ok kids. There is more to come on this and would like your thoughts but there's a high Sierra creek calling my name....

from Lisa Emrich of Brass and Ivory: Life With MS and RA

Sleep disorders, especially sleep apnea, can cause fatigue and increase the risk of cardiovascular disease.  Untreated sleep apnea can lead to depression, heart disease, diabetes, obesity, and excessive daytime sleepiness.  Stress hormones released during frequent drops in blood oxygen level caused by sleep apnea increase the risk of high blood pressure, heart attack, stroke, irregular heart beats (arrhythmias) and heart failure.  Excessive sleepiness can lead to fatal car crashes and accidents at work.

Sleep disorders may be under-diagnosed in both rheumatoid arthritis and multiple sclerosis, according to research.  For information regarding sleep disorders, including sleep apnea, and their connection with RA and MS, please read the following posts I wrote this week for HealthCentral.


This concludes the 122nd edition of the Carnival(Apologies for the late posting.)  The next Carnival of MS Bloggers will be hosted here on September 13, 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, September 11, 2012.

Thank you.

Friday, August 17, 2012

Carnival of MS Bloggers #121

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

Sunday, I had the pleasure of meeting with two MS blogger friends in Denver for breakfast.  Pictured below are Sherry from Word Salads, myself (Lisa) from Brass and Ivory, and Nadja from Living! With MS

Sherry, Lisa, and Nadja.  Breakfast in Denver.  August 2012.
Since beginning Brass and Ivory five years ago in August 2007 and the Carnival of MS Bloggers in January 2008, I have had the distinct privilege of meeting some absolutely wonderful people living with MS. 

Joan, Lisa, and Jen.  Lunch in Delaware.  April 2010.
Diane, Webster, Rob, Lisa, Jen, Gretchen, Jen's Mom.  Coffee in Seattle.  June 2010.
Lisa and Cathy.  MS Cruise to Alaska.  June 2010.
Jen and Lisa.  Weekend in New Jersey.  October 2010.
Lisa Emrich
Lisa speaking at ePatient Connections Conference.  Philadelphia.  September 2010.
Patient Leader Panel at BlogWorld Expo.  Las Vegas.  October 2010.
2010 was a big year for meeting bloggers and speaking at conferences.  Unfortunately, I didn't get pictures of some of the meetings with MSers I attended in 2011.

Lisa, Jen, Cathy, Daria.  Lunch in New Jersey.  August 2011.
Kelly (RA Warrior), Lisa, ePatient Dave.  Philadelphia.  September 2011.
2012 has been very busy - from blogging at the NMSS Public Policy Conference to traveling to Zurich to represent international MS patients. 
Lee and Lisa.  National MS Society Public Policy Conference, Washington, D.C.  March 2012.
International MS Patient Summit: Living and Working with MS.  Zurich, Switzerland.  May 2012.
Jennifer, Lisa, and Ann.  The Walking Gallery.  Washington, D.C.  June 2012.
Michael and Lisa.  Coffee in Washington, D.C.  June 2012.
Thank you so much for opening your homes and hearts throughout the past five years.  I am so grateful to be a part of this MS community and to have so many wonderful MS friends.  I wonder what will be in store for 2013.

This concludes the 121st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 30, 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, August 28, 2012.

Thank you.