Monthly Archives: October 2009

Happy Halloween!

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Fall is one of my favorite times of the year. I’ve been very busy freaking people out with my clown costume, watching horror flicks, enjoying the beautiful autumn leaves and crisper temperatures, and making more “homestyle food.” Hope this post finds YOU well and in a lighter mood: the term “Laughter is the best medicine” is a cliche for a reason— it’s absolutely true and it never changes. Try to put the MS up on a shelf for a while and take the time to enjoy this spooooooooky season…….I know I am!!

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MS News Updates

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It’s been a bit of a crazy week here at the Jersey shore, and so I’m posting a catch-all of latest news. Hope this finds you well and happy:

Joan’s Next MS Chat Room Session: This Friday, Oct 23rd

Come enjoy a Halloween party with Joan and her fellow chatters. The session is from 7 – 9pm, Eastern Standard Time. All are welcome, and more info and login instructions are available at her blog A Short in the Cord……… Joan’s chat is THE BEST!!

Glenn Close’s Mental Health Website

I learned about this site just this morning, as actress Glenn Close and her sister Jessie told of Jessie’s long battle with bipolar disorder on ABC-TV’s The View.  Having struggled with depression since multiple sclerosis altered my life course, I am a HUGE advocate for mental health and bringing knowledge to the forefront. So many people hide their emotional problems because of embarrassment/shame, misunderstanding, and doubt. I seek the ongoing help of a social worker and a psychiatrist— I take an antidepressant— and I want to pass this helpful site on to you and anyone else you might know who is afflicted by emotional illness. There’s help and support: www.bringchange2mind.org

MS Strength has Reached its (First) Goal of $100 in Ad Revenue

It’s taken over a year, but MS Strength has reached the $100 threshold needed for Google to pay out ad revenue. 100% of the profits will be donated to the National MS Society (the U.S.), who has a high priority of using funds towards MS research. The thermometer is set back to $0, and the next donation will be made at the next $100 threshold. Thanks to those who helped the thermometer rise; it feels great to take this money and donate it to our MS cause. A future post will tell about the actual donation, as I am currently waiting for Google’s check. 🙂

A New Website for MSers Which Chronicles 5 Patients’ Journeys and Distributes Information about Disease-Modifying MS Medications

I, along with 4 other MS webwriters ( Lisa, Julie, Kimberly, and Bill) have been hired to video blog our multiple sclerosis stories—along with personal journal entries— at a new website sponsored by EMD Serono, a maker of one of the current disease-modifying MS medications and a future MS medication. The site focuses on our stories and it also provides drug information to those who subscribe. As a HUGE advocate for newly-diagnosed patients learning about and trying disease-modifying medications, I’m proud to have been tapped and I feel myself helping others to weigh their medication options, no matter what the brand and the final decision. Thanks, EMD Serono, for allowing the 5 of us to accomplish this: www.howifightms.info

A Local Piece of News About Officials “Spinning Wheels for a Day”

This story caught my eye— I found it at the Nat’l MS Society’s FB page. Interesting, and it gives those in charge a chance to see what others with adaptive devices must navigate on a daily basis. I doff my hat to you, fellow resident Jackie Jackson: The Star Ledger’s Oct 15th Middlesex County News


Posted in Fundraising Info, MS and Emotions, News / Research

The National MS Society’s Volunteer Match

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I’ve found a helpful link on the National MS Society’s Facebook page and I want to pass it along. This website— VolunteerMatch.org— links volunteer hopefuls with opportunities with the National MS Society (the U.S.) as well as with many other organizations.  Since I’ve been exploring more volunteer opps to get me out of the house, I found this site to be very useful. I even located some opportunities at my closest MS Society chapter. Have a look….


Posted in Working/Volunteering Info

MS: Today I Feel Angry

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I have to admit that my feelings about my status quo change almost daily. No matter how much I try to rope in my moods and put on a mask of gratitude, I most certainly do not FEEL gratitude every waking moment. Just the nature of the MonSter I suppose.

I’ve become acutely aware of my feelings over the past several years and I notice a pattern: I go through cycles of low-level depression/anger every couple of months. It’s a vicious loop, but I imagine it just goes with my personal situation: being out of the workforce at the tender age of 38. I am not feeling sorry for myself or asking for sympathy, but merely acknowledging how I feel. Feelings ARE legitimate and with multiple sclerosis (or any other chronic illness) they can and WILL fluctuate, depending on the circumstances of the day. So I feel the low simmer of anger today as I sit here and feel underproductive, underutilized, and definitely underpaid! Where went that career I was promised in my early 20’s?…

A lot of days I DO NOT feel angry. I feel downright blissful and productive and appreciated. These are usually the days when I leave the house to volunteer or be with family and/or friends. Full days that remind me of how I used to be. Today is no such day. I need to self-start and motivate myself to study for a class test (I’m taking a psychology class which I do, in fact, love.) And some days I find this very tricky. I have also been sending out job inquiries with little response. So I stew….. I try to explain this pervasive feeling of anger / depression to others who don’t have MS and I don’t think I’m fully understood. The anger stems from a lack of utilization. I am like a slightly older toy, sitting and waiting for use because I am still mobile and physically viable, just slightly slow and gently worn. Under the right conditions and with a little care, I can work and be useful.

Here are some things I’ve found that really burn my Bunson:

  • I look at my years-old clothes in my closet, and I wanna bag everything up and bring it to Good Will. But I haven’t any extra money– because I’m underemployed— to buy a new winter wardrobe. The same holds true when I wanna pitch all of my old housewares/bedding/linens and I realize my money’s already spent.
  • I see some able-bodied person landing a journalism job outside of the home and I wish it was me.
  • I make contacts for new writing opportunities and I hear nary a response! This one REALLY singes…
  • I haven’t a grasp of where the day will go— too much free time— and I long for a no-brainer schedule.
  • I KNOW I should be making a reasonable living as an educated, full-fledged adult and I am NOT.

Now I admit that a lot of this anger is trivial, but that’s the way it is. Some days are just not the “full-of-gratitude, I’m-successfully-fighting-my-MS, I-won’t-let-this-condition-ruin-my-mood” sorts of days. Nothing wrong with that. The feelings are honest and they too shall pass. But they are real and they have a right to be acknowledged.

Posted in MS and Emotions