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...

Shhhh! Did you hear? There is an MS SoftServe update!

Just to be fair, I thought I should let one blog know what the other is doing. And the other is all MS SoftServe… not all Amy musings. Come to think of it, it’s Amy musings about MSSoftServe. (Hopefully you know what MS SoftServe is- or this will merely be evidence of  a mind long lost!)

So, in my ongoing effort to prevent sibling rivalry- I ask that you please check out mssoftserve.wordpress.com.

I’d rather not split them up again. Last time was a nightmare! You know how it goes- one starts pulling the other’s hair and then there’s biting… oh wait. That’s me and my sister in the early 80s … Sigh. Just read the blog(s)!

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!

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!)

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!

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~