How did that happen?

  • Random
  • Archive
  • RSS
  • I have 0 answers, but ask anyway
  • Submit to Marbles4MS
banner

Wonder (warning: explicit sap)

Even amidst the coolness of our 7 and 10-year old kids and their project to paint a world free of Multiple Sclerosis, I sometimes get caught up in the day-to-day.. stuff -  scraping paint off the walls, website maintenance, supply purchases, scraping paint off the dog, etc.  While updating www.marbles4ms.org this morning, I came across a blog entry from Connor’s principal concerning a meeting between the two last winter.

I read it again while answering e-mails, ordering some packing boxes online, eating breakfast and doing laundry.  And then I paused at the wonder of what I was reading.  Connor’s principal is a terrific lady and skilled writer, but that’s not what struck me.  It struck me that a human was made to feel that wonderful as to need to write about it.  And that made my kids feel wonderful.  Then many people felt wonderful when they read it.  What an easy way to feel great - it’s like free detox.  Heaven knows I want to feel that way, but whether it’s the daily drudgery of life, or shocking MS pain I’m feeling these days, wonder often eludes me.

I bet everyone has an arsenal with which to kick drudgery or hardship square in the bottom - memories or photographs or family or old letters or a dog who needs only a tennis ball thrown for him to feel wonderful.  When I think about it, I realize that my arsenal overfloweth.  I just need to keep it closer to the surface so it’s there when I need it.  And the check is so easy.  If I’m not smiling, I need it. 

Below is the wonder for which I paused today.  If you may be wonder - deficient, take one more minute to read it and then another 1.5 seconds to smile. (but don’t call me in the morning..)  

http://www.marbles4ms.org/il_blog.html

Have a wonderful day :)

    • #ms
    • #Multiple Sclerosis
    • #inspiration
    • #inspirational kids
    • #marbles4ms
    • #marbles for ms
  • 8 months ago
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+

Q:I was diagnosed with MS last November, and I find your blog very helpful. :)

partypandasssssss

Well that stinks.. but I’m glad I can help.  Let me know if you’d like to see anything in particular on the blog - I’m always looking for suggestions.

Cheers :)

  • 9 months ago
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+
My MonSter is beating me badly today.  Maybe it’s the heat.  I asked my kids if there was anything positive they could tell me to cheer me up.  They told me I was the bravest and strongest person they knew.  Score.
If your MonSter is beating you today, remember you are stronger and braver than you think.
Cheers :)
View Separately

My MonSter is beating me badly today.  Maybe it’s the heat.  I asked my kids if there was anything positive they could tell me to cheer me up.  They told me I was the bravest and strongest person they knew.  Score.

If your MonSter is beating you today, remember you are stronger and braver than you think.

Cheers :)

    • #ms
    • #Multiple Sclerosis
    • #hope
    • #courage
    • #strength
    • #inspirational
  • 9 months ago
  • 9
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+
'\x3cobject style=\x22width: 500px;height: 328px\x22\x3e\x3cparam name=\x22movie\x22 value=\x22http://static.issuu.com/webembed/viewers/style1/v2/IssuuReader.swf?mode=mini\x26amp;embedBackground=%23e87728\x26amp;pageNumber=6\x26amp;titleBarEnabled=true\x26amp;backgroundColor=%23222222\x26amp;documentId=120608155343-4dbd9bd14d704d51813193e2f3d2e8fc\x22 /\x3e\x3cparam name=\x22allowfullscreen\x22 value=\x22true\x22 /\x3e\x3cparam name=\x22menu\x22 value=\x22false\x22 /\x3e\x3cparam name=\x22wmode\x22 value=\x22transparent\x22 /\x3e\x3cembed src=\x22http://static.issuu.com/webembed/viewers/style1/v2/IssuuReader.swf\x22 type=\x22application/x-shockwave-flash\x22 allowfullscreen=\x22true\x22 menu=\x22false\x22 wmode=\x22transparent\x22 style=\x22width: 500px;height: 328px\x22 flashvars=\x22mode=mini\x26amp;embedBackground=%23e87728\x26amp;pageNumber=6\x26amp;titleBarEnabled=true\x26amp;backgroundColor=%23222222\x26amp;documentId=120608155343-4dbd9bd14d704d51813193e2f3d2e8fc\x22\x3e\x3c/embed\x3e\x3c/object\x3e'

Here’s an article from MS Connections magazine featuring Marbles4MS - their project, their goal and what it’s like to live with MS in their family.

I’m so incredibly lucky to be their Mommy. 

Jackson and Connor:  I love you both so much.  You guys ROCK!

Cheers :) 

    • #ms
    • #Multiple Sclerosis
    • #marbles4ms
    • #mmarbles for ms
    • #inspirational
  • 10 months ago
  • 1
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+

Q:That's a great find about the app - very cool indeed. I tried to respond on the blog, but couldn't do it. I'm definitely losing it. Or maybe you deactivated me as a contact, not that I'd blame you given how sporadic I am. I hope you do start punching in your information. It can't hurt and could help a lot in an emergency

willowrussell

I would never deactivate you!  ..unless you were H.A.L. in “Space Odyssey”, or a smartphone that kept calling me an idiot..

One thought is to make sure you’re actually lgged into Tumblr.  This happens to me this all the time.  Just browsing to Tumblr posts does not log you in and then you can’t <3 posts or comment on them.

Hope that helps :)

  • 10 months ago
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+
'\x3ciframe width=\x22500\x22 height=\x22375\x22 src=\x22http://www.youtube.com/embed/NCdQlO8YnYM?wmode=transparent\x26autohide=1\x26egm=0\x26hd=1\x26iv_load_policy=3\x26modestbranding=1\x26rel=0\x26showinfo=0\x26showsearch=0\x22 frameborder=\x220\x22 allowfullscreen\x3e\x3c/iframe\x3e'
  • 10 months ago
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+
Cool MS stuff – available now!
I can’t believe I’ve never done a search in the Itunes store for MS related apps.  Look what I found for the iphone/ipad! It was developed by the Multiple Sclerosis Association of America (MSAA). I searched for something similar for Android and found “MS Diagnosis and Management”, but that app is static, general information only.  Sorry Androidians..
Review:
Very, very cool.  You get out of it what you put into it.  It will build a powerful database with good reporting that can be shared with your MS team (doctor, neurologist, etc.), if you can use this as a daily journal and fill each category with your data.  I&#8217;m going to start tomorrow.  I will start tomorrow.  I promise I&#8217;m going to start tomorrow.  Even if my hands don&#8217;t work, I will type with my toes and start this tomorrow.  I promise.  Really.  
Search &#8220;MSAA&#8221; on the itunes app store.  Download is free.
Cheers :)
View Separately

Cool MS stuff – available now!

I can’t believe I’ve never done a search in the Itunes store for MS related apps.  Look what I found for the iphone/ipad! It was developed by the Multiple Sclerosis Association of America (MSAA). I searched for something similar for Android and found “MS Diagnosis and Management”, but that app is static, general information only.  Sorry Androidians..

Review:

Very, very cool.  You get out of it what you put into it.  It will build a powerful database with good reporting that can be shared with your MS team (doctor, neurologist, etc.), if you can use this as a daily journal and fill each category with your data.  I’m going to start tomorrow.  I will start tomorrow.  I promise I’m going to start tomorrow.  Even if my hands don’t work, I will type with my toes and start this tomorrow.  I promise.  Really. 

Search “MSAA” on the itunes app store.  Download is free.

Cheers :)

    • #ms and technology
    • #cool ms stuff
    • #ms app
    • #multiple sclerosis journal
    • #multiple sclerosis app for iphone/ipad
  • 10 months ago
  • 1
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+
View Separately
    • #Multiple Sclerosis
    • #MS symptoms
    • #MS numbness
    • #hand numbness
  • 10 months ago
  • 5
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+

Great news from the national MS Society

from: http://msactivist.blogspot.com/

NATIONAL MS SOCIETY’S STATEMENT: SUPREME COURT RULING ON THE PATIENT PROTECTION AND AFFORDABLE CARE ACT
National MS Society’s Statement regarding the United States Supreme Court ruling on the Patient Protection & Affordable Care Act


The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act.  This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis. 
 

Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families:
 

Prohibition of coverage denials based on pre-existing conditions:  Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need.
Prohibition of lifetime limits:  Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care.
Elimination of annual limits:  Similar to “lifetime limits,” many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care. 
Extension of parent’s insurance to 26:  Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy.
Closing the Medicare Part D Coverage Gap:  Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage.
Pathway for Biosimilars:  The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future.  The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed—which is good news for anyone who uses biologic therapies.

Background


Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care.  Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive. 


On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs.  Unlike some other diseases, MS is a lifelong illness—typically diagnosed between the ages of 20 and 30s - prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court. 
 

With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization.  Our approach is to support legislation that is in line with those principles.  We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS. 


Contact


For assistance with specific health insurance questions, people with MS, their families or healthcare providers may speak with an MS Navigator by calling 1-800-344-4867 (FIGHT MS).  You can find additional information on our website at www.nationalMSsociety.org.
 

    • #ms laws
    • #laws affecting MS patients
    • #patient protection and affordable care act
  • 10 months ago
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+

MS Fatigue

Here is a definition from Wikipedia:

“Prevalent amongst sufferers of multiple sclerosis , neurological fatigue is a feeling of overwhelming lassitude or tiredness that can occur at any time of the day, for any duration and does not necessarily recur in a recognisable pattern for any given patient.   Neurological fatigue has been described as an overwhelming feeling of weakness not associated with increased physical effort. There is near universal support that the fatigue experienced by people with MS goes beyond that of people without the disease. Many Multiple Sclerosis patients report sleeping more than 12 hours a night on successive nights and still being too tired to complete their daily duties despite feeling physically rested. This fatigue is also highly variable and there are some with MS who do not experience neurological fatigue as a primary symptom. As this fatigue is an invisible symptom, and because of the difficulty of explaining the ‘tired brain’ feeling of neurological fatigue, others can misinterpret the behavior of persons with MS as lack of effort, but it is important for those dealing with MS patients to realize that this may not be the case.  The specific causes of fatigue in Multiple Sclerosis sufferers are not fully understood.”

I’ve had MS for 6 years now and I still struggle sometimes when explaining my MonSter to the general public.  It’s never been a secret for me to keep – I’ve had no choice.  I’ve always needed to explain why I can’t stay at the party; why I can’t stay awake at 2 in the afternoon; why I can’t spend more than 10 minutes outside on a hot summer day with my kids; why I’m dragging one leg behind me like Captain Ahab; why I can’t see 2 feet in front of me.  There’s always something.  So when I heard the penny theory early on in this adventure, I quickly adopted it as an easy way to explain MS fatigue to folks.  There’s a lot more than fatigue to deal with, but it was a start.

The Penny Theory

Living with MS related fatigue is like waking up every morning and finding pennies on your bed side table.  These imaginary pennies represent the number of things you can do that day.  You have to spend a penny for any physical activity and some days, you have to spend pennies for mentally taxing activities as well.  Say you find 5 pennies one morning.  For you that might work out to:

  • showering
  • preparing breakfast for your family
  • 30 minute trip to the grocery store
  • doing 1 load of laundry
  • preparing dinner for your family

That’s it.  For the day.  Your pennies are gone. 

Now think about all you do in a day and how many pennies you would need to get it all done.  You can’t cheat.  You can’t stretch a penny.  You can’t borrow a penny from tomorrow or save one from yesterday.  And you can never plan for your pennies since you’ll never know how many there will be.  On a day when you have a graduation to attend or company coming for dinner, there may be 2 pennies.  How would you make that work?  You wouldn’t.  You couldn’t.  It would be a pysical impossibility.

That is MS fatigue. 

Hopefully, the Penny Theory can help someone who’s struggling to explain to family or friends that they’re not being lazy or difficult.  For many, it’s one of the debilitating parts of this disease that has turned their lives upside down and inside out.

Ps. I can’t end this post with my typical “cheers:)” salutation.  I can’t come up with a witty summation or an upbeat twist.  There’s nothing cheery about MS fatigue.  It just stinks.

    • #multiple sclerosis fatigue
    • #ms fatigue
    • #ms diagnosis
    • #explaining ms
    • #explaining multiple sclerosis
    • #penny theory
  • 11 months ago
  • 6
  • Permalink
Share

Short URL

TwitterFacebookPinterestGoogle+
Page 1 of 8
← Newer • Older →

How did that happen?

About

Apparently, I have something to say. I've spent the past 43 years of my life dazed and confused and constantly asking the Cosmos "but how did THAT happen?".

This blog, with your help will hopefully answer that question.

I have:
2 amazing sons (almost 7 & 10)
1 wonderful husband (48)
1 nasty case of Mulitple Sclerosis (6)

Pages

  • How did that happen? - Photography

Me, Elsewhere

  • Facebook Profile

Following

  • the-absolute-funniest-posts
  • partypandasssssss
  • opalgemblog
  • theanimalblog
  • positivethinkingforlosers
  • chronically-something
  • uglypuss
  • lisie318
  • yellowonesdontstop
  • bunnyears
  • springloadedandrusty
  • mustbelieveinme
  • fearingtoattempt
  • saratheblog
  • mutedwater
  • mymsdiary
  • chroniccurve
  • connie
  • ms-expressions
  • betterleftunsaid7
  • hempchick6
  • fabbra
  • audreyholmes
  • tumblinglifeseveryglory
  • shitsandkittymoes
  • knovak75
  • aloneandfloatinginspace
  • mistyeve
  • shadowofasoul
  • kiltlogy
  • chronicillnessbucketlist
  • badscientists
  • thingsparentsdo
  • kamikazee

I Dig These Posts

  • Photo via the-absolute-funniest-posts

    Follow this blog, you’ll love it on your dashboard!

    Photo via the-absolute-funniest-posts
  • Link via the-absolute-funniest-posts
    but why is forty spelled forty not fourty...

    francieum:

    jomason:

    Because no one likes u

    Follow this blog, you’ll love it on your...

    Link via the-absolute-funniest-posts
  • Photo via shadowofasoul
    Photo via shadowofasoul
  • Link via mymsdiary
    Michelle Obama DNC Speech Full 2012: 'How Hard You Work' More Important Than Income | Video - ABC News

    withouttheweight:

    Last night, Michelle...

    Link via mymsdiary
See more →

Top

  • RSS
  • Random
  • Archive
  • I have 0 answers, but ask anyway
  • Submit to Marbles4MS
  • Mobile

All rights reserved http://www.Marbles4MS.org.

Effector Theme by Pixel Union