Category Archives: LOL-Day to Day

The dailies for this life of learning.

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SSDI- From DISability to THISability

Please join us tonight for MSLOL Radio’s 11th show From DISability to THISability.
Tonight just happens to be Sept. 7th 2011 at 8pm EST

While coping with MS, we try to focus on what our abilities ARE, not what they aren’t. So leaving a career to be officially labeled Dis-anything by the government of these United States, often compromises the emotional foundation we’ve worked so hard to maintain. When you add the application logistical nightmare to the mix, it’s a wonder that any of us make it through the process.

Tune in tonight and you’ll hear from people who have made it through that process and found new meaningful ways to spend their time, often empowering them to make a difference not only in their lives, but in the lives of many.

We will hear from Kristina Erickson, the health insurance specialist from the National MS Society, who will help us demystify the process and provide some tips and tricks in getting through it. And a number of very compelling people who have been there and done that!
It’s a call in and listen show, so all you need is a telephone and the ability to dial the toll free # (877) 552-4068. Or if you prefer to listen via that link to the world at large that you call your computer… you can do that too! Go to this link and turn up the volume!

While you are waiting patiently for the show to start… enjoy the music stylings of MSbians- Katie’s Blues (Find a Cure for MS!) It’s our new show theme! Thanks Dean Kramer!

Oh, I almost forgot. If you are busy tonight… worry not! The podcast will be available after the show for listening on your schedule. Life is sweet, isn’t it?!

 

 

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Stuff You Should DEFINITELY Know!

If you don’t already listen to the smart, entertaining, informative blogcast on the How Stuff Works website  (that being, “Stuff You Should Know“) you are seriously missing out. Josh and Chuck are so many things. They’re smart, funny, self-deprecating, did I say funny? conversationalists that make all the most amusing references, ones that speak to me on a generational level. (Though I think I’m a touch older- we clearly have similar reference points!)

I listen to their podcasts quite regularly; it makes for excellent distraction while riding the bike. (Though I recommend stationary here… the laughing will be dangerous when balance is required!) The topics they speak to are everything from “How McDonalds Work” to “How Fascism Works” to “How Scooby-Doo Works” to  “Is Buthan on to Something with Their Gross National Happiness?” They run the gamut… and keep you coming back for more. Even the titles that don’t immediately appeal like: How Terror Management Works or How Agritourism Works are made fascinating by these guys. And I should mention Jeri here.. she produces the show and we know that Josh and Chuck wouldn’t sound so smooth without her! So kudos to her too. (Too patronizing? 😉 )

So here is the money moment. I wrote them a letter a few months ago about MS SoftServe and they read it on the show “How Military Snipers Work”- it couldn’t have been the one on tickling or clouds.  So, follow these links and add them to your to do list. Assuming you are able to commit facts to your long-term memory- you will be impressive at parties and on facebook status updates. Or, you’ll just be entertained for the length of the show and forget it. It’s all good!

So, listen to the listener’s mail segment that I’ve edited out of How Military Snipers Work. It’s only a minute, though be warned! Their affable personae may lure you in for good.

MS SoftServe on SYSKl!

Happy Happy Joy Joy~

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See! I told you!!

You see Blog, I have proof ! The essays I’ve written for Health Central (that ones that have kept me so distracted) have been posted. So you can see first pixel that I’m on the up and up.  Here are the links for MSCentral. Right here. Just below this text. You see them?   No, I’m not being defensive! (Why is it always the other person who is defensive!) I sound like this because quite frankly, I feel funny that you thought I was in an illicit affair with another blog. There will never be another you, so please get that out of your default settings.

I know you’ll understand once you have context…

Your Next Neuro Appt: Making Sure You Remember Not to Forget

Everyone knows the first rule of preparedness when you are off to see your doctor. Bring a list. (If you didn’t know, go get a pen!) There are so many emotions that surround any doctor appointment; but when you are coping with a chronic, unpredictable, potentially progressive disease, (sheesh, just typing those words gives me the yucks!) the anxiety factor is huge. And anxiety does not partner well with clear thinking and remembering….. read more~

The Squeeky Wheel get’s a lot more than greased, it gets help.

Not everyone is like me. I’m a big-time communicator and very in touch with how I feel and what I need and I’m not afraid to ask for it. If I want a beautiful ceramic mug for my anniversary, I email a link to my husband. If I need a hug or to hear that I look nice, I tell the aforementioned person. This approach doesn’t work for everyone. Some want their needs to be understood (clairvoyance is very helpful here) and when they aren’t realized, there is disappointment. I’m all for putting it out on the table to increase the likelihood that I’ll get what I want (mug) or need (hug).read more~

 Hell-O Mommy… Pay Attention

When Madeline was born, I had been living with Multiple Sclerosis for 13 years, and on that very day I started planning what would be our first conversation about MS. Ok, maybe not that day. But worrying about that conversation was a big part of my “first time mommy-how am I ever going to do this baby thing” anxiety package. So I learned the basics, the one’s that all first time parents need to know and are forced to figure out! You know…  the holding, the changing, the nursing, the sling-ing, the bouncing, the soothing, the “sleeping” and that car seat that we couldn’t figure out-ing –These are the scenarios that humble us at a time when we thought we already knew how to do this “life” thing. With our new baby, we were reduced to preschoolers with their mittens clipped on their coat sleeves. And even though our learning curve kept us very distracted, I couldn’t ignore my fears of how this disease would impact my mom-abilities and how it would ultimately make Madeline feel. I needed to start prepping her for my unknown future as soon as possible! read more~

So blog, I hope this makes my case. I promise to keep you and all of our readers up to date on these writings. You will always be my first, blog, and I will never leave you in the internet dust. I promise~

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If You Can Dream: Learning to Thrive with Multiple Sclerosis

I recently met a documentary filmmaker named Emmett Williams. His friend Thy has been living with MS for two decades. They were having a conversation one day, about how few documentaries provide an in-depth look at what it’s like to live with MS. How can one  truly understand the MS experience with a few brief clips and short interviews. A film needs to show the intimate details of life with MS- from waking up to going to sleep and everything in between.

So, instead of lamenting that these film portraits of MS don’t exist, they are making one! How is that for proactive~

In Emmett’s words:

“If You Can Dream: Learning to Thrive with Multiple Sclerosis” will document the lives of  three people with MS — all with different variations, all at different points in their life. We will learn about their daily battles and triumphs, the importance of their support network, and the dreams they have for themselves and others who have been diagnosed with Multiple Sclerosis.*”

Once made, this film will bring its viewers closer to understanding of what it really means to live with this disease. This deeper look at life with MS, will help people better understand the variable nature of Multiple Sclerosis. Speaking as a person who has been living with it for 23 years- I  love the idea of a larger community who “gets it!”

Check out the website and watch the work in progress. If it is meaningful to you, consider making a donation. No matter the size every little bit gets this film closer to the proverbial can.

~Amy

*If You Can Dream will donate 25% of everything contributed over $10,000 to MS charities and 50% from any earnings after the film is finished.

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MSLOL Radio- Show 7: It’s all in the blog~

Tune in tomorrow, that’s Wednesday April 20th, at 8pm EST for “It’s All In the Blog” MSLOL Radio show 7. You’ll meet two award winning MS bloggers: Marc Stecker of WheelChair Kamikaze and Lisa Emrich of Brass and Ivory and founder of the Carnival of MS Bloggers . So get busy checking out their posts and join us tomorrow to meet ’em!

So you are saying “I’d love to, but how?”

Call (714) 510-3712 or toll free at (877) 552-4068 to listen, and press 1 to talk.

If you are you too shy to call in with questions or comments,  Skype me at mssoftserve or add us to your buddy list: mslolradio

No worries! If you can’t make it tomorrow, you can listen to the podcast at this site. While you are there… check out the archive. If you listen to them all in a row (12 hrs worth) you will hear how they get better and better and better!

Talk to you tomorrow~

Amy G.

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MSLOL-Radio: CCSVI- Been there done that!

(Read this in your best sensational news voice)

You’ve heard about the Liberation procedure… you’ve heard about the miraculous response… but do you know anyone whose  has been there done that!

(You may resume your normal reading voice!)

Join us on Monday March 7th (8pm EST) for a conversation with a number of people who have had the Chronic Cerebro-Spinal Venous Insufficiency Surgery. We will meet those who swear by it and those who don’t. It’s going to be straight up candid conversation…. there will be no talk about the contentious stuff or efforts to coerce or pressure.   Just a personal conversation with those who have an CCSVI tale to tell.

So mark your calendars! Monday, March 7th at 8pm est. It’s just a phone call away! (714) 510-3712

P.S.- In order for this show to be balanced we are planning to speak with 2 individuals who have had success with the procedure and two who haven’t. If you or someone you know fits the latter… please email me… we want to know their stories too!

amy@mssoftserve.org