Category Archives: Blogroll

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Find Me In Fatigue

Reblogged from MS~LOL: Multiple Sclerosis a Life Of Learning:

Fatigue is hands down the most difficult MS symptom to experience and explain. While all invisible symptoms defy description, finding words to convey the feeling of this type of exhaustion is not easy. Because everyone thinks they understand "being tired," it is particularly helpful to draw a line of distinction between that and this experience. So I will try to do that...

Read more… 1,063 more words

I sitting here with 7 other people with MS at Kessler's MS Wellness program talking about MS fatigue and reflected (in my head) on this post...
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Here WeGo: Who Deserves Awards!

So tell me, are you a Health Activist? I bet you are going left and right with your head right now. But I think, there is a good chance you are wrong. So if I get you going up and down with that noggin, please check out Wego Health. They are all about empowering health activists. (ie. helping us, to help other peeps like us.)

Not convinced? Let’s go to the dictionary, shall we?

Ac•tiv•ist  1. An especially active, vigorous advocate of a cause.

I know what you’re thinking. That you have no interest in yelling about individual rites; you’ve never marched with a picket sign and sometimes you look askance at those people who remain in a public space to make a point. And forget about the whole “hunger strike” thing. And the words Active and Vigorous are not exactly the go-to words used when describing life with MS… But activists take on many different forms.

I’ve developed this handy check-list to help you figure this out.

  1. Are you very involved in an online MS community?
  2. Do you visit your blog, the MS board and/or your facebook page with such regularity that you always hear the distant call of people you love pleading for your attention? “Umm…honey, you said 10 more minutes 25 minutes ago!”
  3. Do you find yourself unable to sleep because you are concerned about the well being of someone you met online who is struggling with her/his new diagnosis or symptom?

If you were nodding as you read any of these statements, then you my friend, are a health activist. You are a person who is trying to make change, a change that will make a difference for all of us living with Multiple Sclerosis. And that change can be as simple as making someone feel better about their challenges, or making a person laugh at something they couldn’t before. Maybe you are someone who provides a valuable resource of up to date information about MS. Or you are someone who helps as a mentor to the newly diagnosed. There are so many ways to take an active role in the MS community and Wego is here to make our role even easier. They’ve added adrenalin to my commitment, my passion and my efforts to help the MS Community. (After all, I’m not only an MS activist; I’m also a member!)

So, now you know who you are. And you also know who Wego Health is.  And your timing is impeccable. Because right now- Wego Health is awarding health activists who are making a difference. If you or someone important to you fits in to the categories listed nominate them. And while you’re at it- spread the word and get more people thinking about it.

Check out his link to learn more about the award program. Think hard about who makes a difference in your online MS experience. Then nominate them. And if you think you fit the role- feel free to nominate yourself.  Here is the handy dandy link that will allow you to start nominating!

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London Calling: How I Learned to Stop Worrying and Love (the) Gigi!

I went to Europe. Really. I did. I never thought it would happen. I mean, with our enormous student loan debt we never have extra money for luxuries such as a vacation. But lucky me! I’m the granddaughter of Beatrice Goldstein Kaplan. She came to America in the 40s and left all of her wonderful family in London for us to play with.  And as a result we are in no short supply of fabulous British cousins always telling us about their comfie spare rooms and how nice we will look in them. But without tickets to get across the pond it didn’t even seem worth thinking twice about.  So when the opportunity came up to think twice, I realized that money wasn’t the only reason I resisted thinking twice.  No, the money (or lack there of) was a helpful way to avoid the other reason for not considering this vacation. That being the one that hides underneath every moment when living with an incurable, unpredictable, potentially progressive disease.

About 3 years ago, my 20+ year old MS started acting out beyond it’s normal behavioral issues. Symptoms heightened and I shortened. (And I’m only 5’2″- so I don’t have much to work with here!) Over these past years I’ve been challenged by constant dizziness, greater limitation in my ability to walk and worse of all, an inability to stand for lengths of time. Like- for example- long enough to cook dinner. But as all of us with MS do- I found new ways to cope. Not-to-say that any of it is easy. These changes are always emotional ones. But when all is said-and-done, I have found a way to live within my limits-de-jour. So long as my expectations of the day are low and I have the “bright-side” handy when I need to break it out, – I can deal.  Sorry I left the kitchen such a mess honey…you know….i have MS ;)

So when the possibility of venturing across the pond became a reality I went in to high-gear worry. I would have to come out of hiding and face the fact that I am now “it.”

Not long after our tickets were booked we started realizing that we have other close connections on the mainland. (that being Europe) Our lovely former neighbors moved to Berlin and our friend knew someone who has a great place to stay in Paris. Now how could we possibly make that voyage and not take advantage of these opportunities. But in the back of my head I’m thinking, If we don’t do it now we may not have the option when I’m less able. Oh wait. Not when; should I become less able. (Phew! Found that bit optimism in my back pocket!)

And though my adorable college professor husband doesn’t earn the big bucks (“even though we aint got money“) we do have summer vacations! So we reserved August for what we hoped would be an amazing trip.  And it was all that; for reasons planned and unplanned, expected and unexpected. And I learned a lot more than the detailed history of the Berlin-Wall falling or how something called a Shandy is a great way to experience an English Pub with an actual beer product in hand.

* * *

Tune in next time for the second episode in the series “London Calling or How I stopped worrying and love GiGi” when I will discuss my experience with MS, accessibility in Europe and my new love for GiGi – replete with photos evidence for all of the afore mentioned.!

(BTW: If you subscribe to this blog- you will be notified of when that happens. I’m thinking this weekend.. but who knows!)

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Dependence Day

Reblogged from MS~LOL: Multiple Sclerosis a Life Of Learning:

Click to visit the original post

For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals.

Read more… 690 more words

July 4th 2009 was so significant to me- July 4 2012 we even more so!
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Would Ubelieve it?

Have you ever heard of Uprinting.com? I hadn’t until it was recommended to by our resident graphic designer, Mark Miller of Aesthtica Studio fame. (He is one of us, btw!)  After setting up my first order, I was immediately contacted by “Ucommunity” who let me know that Uprinting  offers non-profits $250 worth of free printing and a 10% off there after. All we have to do is spread the word.

So, if you are a non-profit or play one on tv, check them out. We have to rally around those companies with a conscience!

an MSSoftServe sponsor~

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MS SoftServe-Gosh I wish I had extra cash to donate…

If you would like to make a $25 contribution to MS SoftServe, but just don’t have the extra cash, you are in luck.  The Find a Cure Panel will do just that. FACP is a place for people who are living with MS and other diseases as well as those who care for them a chance to express their opinions and needs.

So, if you’re living with it or a caretaker of someone who is, check out this link for the Find a Cure Panel’s site to learn more. After you are assured about the anonymity and the value in providing your voice to this effort, go the extra 2 minutes to fill out the brief survey and help to make MS SoftServe available to all of us who need it!  $25 doesn’t make a little difference.. it makes a HUGE difference. So vote early and often! ;)

Oh, don’t forget to select your non-profit of preference (MS SoftServe) … you’ll have to scroll all the way down (MS SoftServe) the alphabetical chain (MS SoftServe) to Multiple Sclerosis and click on (MS SoftServe) that little circle next to your choice (MS SoftServe).

It’s that easy! :)

Thank you!

~Amy G.

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MS You’re Never Gonna Win…

My daughter Madeline wrote and composed this song about me and our lives with MS.  I’m one lucky woman!

Can you believe what I feel right now? Why can’t I push the darkness down…
Trying so hard to let it go, but life- just aint that easy.
Working so hard to leave the stress, how did I get in this ugly mess.

Just never ever ever gonna let it go, but life just aint that easy~

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.
MS –You’re never gonna win, Hold in there mom, I’ll be there to help you.

So many scars all over your brain, why can’t your neurons work again?

Waiting for scientists to find a cure~.

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.
MS –You’re never gonna win, Hold in there mom, I’ll be there to help you.

I will stand by you, until the end, as the darkness fades away.
I’ll be there with you to say….

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.
MS –You’re never gonna win, Hold in there mom, I’ll be there to help you
MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.

I’ll be there to love you, I’ll always be there for you.
We win!

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Advocate Schmadvocate!

I’ve always said that it is a cruel joke to expect a person living with MS - the chronic incurable disease that changes over years, months, heck – even days - to be his/her own advocate. I mean c’mon! How are we supposed to by-pass the emotions that are in-and-of-themselves paralyzing, to educate ourselves about our version of this disease that is always changing? (Read more and tell me how you balance it! I need all the suggestions I can get.)

Oh, and while I have your attention:

Tell me, do enjoy reading these posts? Do you find my writing witty, engaging, annoying? If the first two adjectives are true, take a moment and subscribe to MSLOL. With this status will get a special email telling you that you are about to miss something; something that might make your day better. And here is the cool part. You probably won’t be receiving a note more than once a month. I’m not one of these every week bloggers… No, I spread myself a bit too thin for that. So if I’m posting, it’s important. (at least from my perspective!) And lucky you. You don’t even have to scroll to the end of that column on the left. The link is just under the little paragraph “about amy.” There, no lower. You see it? It’s under “Get my email” and it says subscribe to MSLOL. I know, that doesn’t make sense… but it will get you where you need to be.

Oh, and if you forgot what you were supposed to be doing… its reading and commenting on this little post on Health Central’s MS site!

Your welcome!

;)

http://www.healthcentral.com/multiple-sclerosis/c/93851/149857/week/

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Way to give! (or how to donate $25 without taking out your wallet)

You know all about MS SoftServe, right??  If you’ve somehow gotten to my blog and haven’t heard, I bestow upon you a silly amount of links! (video, blog, the staging ground for the site in progress and the cause on facebook.)

Are you still with me? Do you feel informed? Good.

MS SoftServe is making some amazing progress with grants applied and (some) awarded, with a spring campaign in the planning , and fundraisers on the schedule. At the rate we are moving.. this site will be available for use before 2012 becomes 2013.

I know, I know, you are really behind this effort. You know it will make a difference for PWMS and those who love (or even like) us. But unfortunately for many of us, making a donation is just not in the budget. Well lucky you (us).  The Find a Cure Panel is your ticket to karma (and so early in the year!) All you need is a few extra minutes to fill out an anonymous survey and Find a Cure Panel will donate $25 to MS SoftServe in your name.  What is  FACP you ask? . Here is the short version: FACP empowers people to impact on research. Click this link  for details.

Once you’ve determined that this org is legit and you’re ready to sign on to furthering the understanding of MS for the researchers who are dedicated to finding  a cure (not to mention the healthy donation to MS Softserve!) send an email to info@findacurepanel.com and put MS SoftServe in the subject line to make sure the cause you care about is getting the proper props!

Then sit back and enjoy the rest of 2012 with your increased karma… making this information contribution a win/win situation!

Thanks!

Amy