Tuesday, November 27, 2012

MS in America 2012 - Take the Survey

In five short days, the "Multiple Sclerosis in America 2012" survey (sponsored by HealthUnion, a creator of disease-specific communities) has received an impressive 1000 responses from people like you diagnosed with MS.

Take a moment to add your experience and opinions to the survey.  Results will be shared in January 2013 which the launch of a new MS website/community.


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" accesible.

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.

Monday, November 19, 2012

Broken Bones and MS

A recent study confirms that patients with multiple sclerosis have an increased risk of fractures and broken bones.  Researchers analyzed hospital records and death certificates using an English national linked Hospital Episode Statistics (HES) database covering the population of England of about 50 million people during the years 1999-2010.

In this English study, patients with MS had an overall 99% increased risk of fracture as compared to the reference group (Ramagopalan, 2012).  This exceeds the results of previously published studies which investigated the risk of fracture in patients with MS.

Read this post in its entirety:
Increased Risk of Fracture in MS Patients

Monday, November 12, 2012

Leading a Double Life

Last week, I spent a few days discussing important health and patient issues with a group of inspiring patient leaders representing a wide variety of disease states and communities.  Although none of us had the same disease, we discovered that we had similarities and overlap in our experiences and philosophies.  

As we each contributed to the conversation, several of us would preface our responses with our own personal experiences or those we’ve observed in our communities.  I found myself frequently saying things such as:
  • “As an MS blogger…”
  • “Within the RA community, I see…” 
  • “As a person living with chronic illness, I….”
On the trip home, I realize that not once did I say, “As a musician living with MS or RA, my experience is…”

Read this post in its entirety:
Arts in Health: My Dual Life as a Musician

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.

    Sunday, November 4, 2012

    Sharing Pictures from the Big Day

    Just a few images from the wedding which our fabulous photographer captured. It's so hard to pick favorites out of the over 1000 pictures which were taken. I think I've narrowed it down to around 400 so far? Enjoy.

    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.