Thanks for Helping to Celebrate the Chat Room's One-Year Anniversary!

Thanks to the chatters who came out to celebrate the one-year anniversary of the Delaware Area MS Chats!

We had one new visitor, Jughead from Jughead's Baltimore Blog fame. Thanks, Jughead, for the information about the Bioness L300 Foot Drop System.

The Delaware chatters outnumbered the out-of-staters this week, and as always we enjoyed our buddy Jen from New Jersey. Unfortunately, Diane tried to join just after we ended for the night (sorry, Diane!).

Thanks to everyone who has made this chat room a success this past year. We've reached out to a number of people who don't normally attend face-to-face support groups as well as many newly-diagnosed people. We've discussed a broad range of topics, which are too many to summarize here.

As we go into our second year, watch for possible "guest speakers" to join us. Our hours will change to 7:00 pm - 9:00 pm eastern time, but the room can stay open longer if anyone wants to continue the conversations. I look forward to another fun year of support, information exchange, and lots of laughs!

NEXT CHAT: JULY 24

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Delaware Area MS Chat This Friday: Happy Anniversary!

Delaware Area MS On-line Chat
Friday 10 July, 7:00 - 9:30 pm (eastern time)
Chat Topic: Happy Anniversary!

In July, the Delaware Area MS Chat Room will celebrate its one-year anniversary! So let's discuss anniversaries, like the anniversary of your MS diagnosis. Do you remember it? Do you recognize it in any way? Does it bother you? Do you recognize anniversaries of any major changes or accomplishments you've made as a result of MS? Let's talk about the ways we've grown in the last year, too, and any goals to meet before our next anniversary. Let's chat about this and, as usual, anything else that comes up!

If you want to connect on-line with others with Multiple Sclerosis in Delaware and surrounding areas, please join us THIS FRIDAY any time between 7:00 - 9:30 pm. Show up when you want, leave when you want. Chat from the comfort of your own home.

To attend, go to the right margin of this blog and click on the coffee cup or "Enter My Chat Room." Then follow the directions. (You must have Java enabled.) I'll see you in the room!

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Happy Fourth of July!

Also known as "American Independence Day" for any non-US reader. In Great Britain, it's known as the American Rebellion.

I once worked on an international project and our team was made up of people from six different countries. At the end of a conference call one American woman said, "Have a happy 4th of July everyone." Of course, most people on the conference call were puzzled. I had to point out that this is an American holiday.

Having said that, I wish to send belated Happy Canada Day wishes to my northern friends.

To the rest of you Yanks, be safe and well.

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Whew! That was a lot of work...

...Other people's work, that is!

Today, I took the car to the shop for transmission service and oil change; then the bug pro came to install termite monitoring stations (oooh, sounds like some hi-tech, space satellite); then the basement waterproofing pro came to fix a leak in the basement wall. They all worked quickly and professionally.

So why am I so tired? I guess it's exhausting watching other people work so hard.

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Well, that WAS completely different

Thanks to all the chatters who popped in Friday night for a very different MS chat. Because the topic was "open," the discussions were all over the place (about MS and not about MS), and got a bit heavy and times. But it was good to connect with friends and share deep thoughts and laughs in a safe chat room.

Next chat 10 July: The chat room will celebrate its 1st anniversary!

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Delaware Area MS Chat This Friday

Delaware Area MS On-line Chat
Friday 26 June, 7:00 - 9:30 pm
Chat Topic: And Now for Something Completely Different

Let's do something completely different in honor of the lazy days of summer. Call it an "Open Mike Night" or maybe "BS about MS." No specific topic, just whatever you want to chat about. But be warned: if you whine too much, you'll need to follow up with a joke or a song. We'll have a karaoke machine in the wings…

If you want to connect on-line with others with Multiple Sclerosis in Delaware and surrounding areas, please join us THIS FRIDAY any time between 7:00 - 9:30 pm. Show up when you want, leave when you want. Chat from the comfort of your own home.

To attend, go to the right margin of this blog and click on the coffee cup or "Enter My Chat Room." Then follow the directions. (You must have Java enabled.) I'll see you in the room!

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Happy Summer Solstice

I want to be aware of nature and the Universe and the changing of the seasons, but feel disconnected from it all. The solution will be to disconnect from the PC just for a few days and take a look outside. To experience Summer in all its glory. This photo is giving me ideas...!

Don't worry - the CHAT will be back on Friday!

Blessed be!

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Oh Well! Back to Normal...

I'm back to my "baseline" energy level (which isn't much). Sigh. The day started out okay, but then I slowly descended into the concrete pit early this afternoon. Of course, I continued to push myself (you do, too, and you know it). Around 5pm I couldn't get out of the chair (fortunately, it was a comfy chair).

Oh well! Having lots of energy was nice while it lasted. But now I'm paying for using a week's worth of spoons in one day.

Ironically, I attended an MSAA Life Coaching teleconference on Fatigue this afternoon. It didn't help relieve my fatigue, but it reminded me not to be hard on myself when it hits. I'm not lazy. I'm not a bad person. I just have MS.

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What a Difference a Day Makes

Today, I feel much better than yester- day! I don't know how long this will last, so I am NOT taking this wonderful day for granted. Of course, I'm using this energy to do chores. "Oh what fun it is to clean..." Feel free to finish that song with lyrics of your choice!

Thanks for all the support I received for my "cement" day, yesterday. The comments got me through that mess.

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It's One of "Those" Days...

I woke up feeling like I was covered in cement. After a time, I got out of bed, but there's not much else that I will be able to do today. So this is the end of this post.

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Another Cool Chat

Thanks to everyone who visited the Delaware Area Multiple Sclerosis Chat room. As promised, it was another cool chat.



"Kathy" reported that the Delaware NMSS chapter has funds for Delaware residents who need assistance in making their homes more accessible. They are also looking for ideas for future programs, so be sure to contact them if you have suggestions.

We talked about health care issues, and the national discussion on the subject. "Cathy" from Wisconsin was able to watch Obama's Green Bay town hall meetings on the subject (check out her thoughts at her blog). Northern Delaware has formed an action team in response to the National Health Care Day of Service and is planning a walk on June 27th at Paper Mill Park to draw attention to the need for health care reform. We'll definitely have to keep up on this subject (hmmm... maybe a topic for a future chat?).

We did chat a lot about cooling vests, neck wraps, wrist wraps, misters, fans, things that work, things that don't work, and other ideas for staying cool. I'm getting used to using my cooling vest, and feel it was worth the investment. "Lanette" loves her best cooling device ever, her neck wrap.

And yes, we served lots of virtual frozen drinks to make sure that we all stayed very, very cool!

NEXT CHAT: 26 June 2009

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Delaware Area MS Chat This Friday

Delaware Area MS On-line Chat
Friday 12 June, 7:00 - 9:30 pm
Chat Topic: One Cool Chat Room!

No, I'm not bragging about the chat room (although it is a lot of fun). Because the weather continues to heat up, it's time to focus on cooling products. Let's share information about any cooling products you use (cooling vests, fans, neck wraps, etc.) or any techniques you've perfected to keep yourself from melting. I've had my cooling vest for a few weeks and will share my experiences. So put on your cool clothes and join us on Friday.

Let's chat about this and anything else that comes up.

If you want to connect on-line with others with Multiple Sclerosis in Delaware and surrounding areas, please join us THIS FRIDAY any time between 7:00 - 9:30 pm. Show up when you want, leave when you want. Chat from the comfort of your own home.

To attend, go to the right margin of this blog and click on the coffee cup or "Enter My Chat Room." Then follow the directions. (You must have Java enabled.) I'll see you in the room!

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Philadelphia 30th Street Station Freeze for MS

Philly Improv Theater and the National MS Society's Greater Delaware Valley Chapter teamed up on this flashmob freeze at 30th Street Station.



If you don't see the video on this page, you can see it at http://www.youtube.com/watch?v=VepWzarT1j8

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Irony or Synchronicity?

After posting yesterday's blog wondering about why I don't feel like writing, I popped in to read some very enlightened and fun comments to that post. Then I wandered down the right side of my blog where I have a number of widgets for topics that interest me like bird watching and phases of the moon.

But I was stunned and tickled to see that Today's Daily Om (see widget in the right margin) topic for 1 June 2009 is "Taking a Time Out; You Are Not Crazy." Wow! Is that ironic? Is that tapping into the Universal Flow? Or did they use my blog post to give them an idea for what to post next? Most likely NOT the third!

My Muse obviously has a sense of humor!

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I Really Should Write More Often...

... Afterall, that's the point of a blog, right? Blogs started out as personal diaries or journals, but evolved into a forum for thoughts and idea sharing.

I have a LOT of ideas to share and things to report. I just don't seem to be able to communicate with my Muse right now. Ah, but I know she is there, whispering in my ear, her light reflecting off the water, her scent wafting from the flowers on the back porch. Why can't I hear her? Or am I simply ignoring her, choosing instead to live a private life for a while?

Could that be? Is it because of Facebook and MySpace and Blogs, oh my, that I'm craving some privacy? Have I lost myself in a sea of constant communication with everyone on the planet?

Or have I written my one story, and now there is nothing else to write?

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Thanks to all my local supporters

What an amazing night we had with author readings for the Delaware Anthology release party!!! It was moving to hear the stories of others with MS - so much like my own story, yet each one so different.

I was touched by the people who showed up to support me. Me!??!! Just another face in the MS crowd, but these people made me feel like I'm one that matters. And you all matter to me! Thank you all...

Speaking of the Faces of MS, check out the video from World MS Day, set to the music of U2's Beautiful Day:




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Delaware MS Anthology Release Party

The Delaware MS Anthology is finally here! Hot off the presses!

"MS = My Success" is a new book containing a collection of writings by Delaware residents living with or otherwise affected by Multiple Sclerosis.

The stories are reflective, creative, and meaningful. By sharing their experiences in the book, the authors hope to inspire and motivate others with MS.

The process of writing about feelings and emotions is a remarkably effective means of creating clarity and perspective in your life.

Join us at our Anthology Launch Party!
Come get your very own copy of this wonderful work of art and have it signed by the authors! The authors will be doing live, selected readings from the book at 7:30pm.

When: World MS Day, Wednesday, May 27th
Time: 7:00pm - 8:00pm
Where: Newark (Delaware) Free Library

750 Library Ave.

Newark, DE 19711

(located at the beginning of Main St. in Newark)

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Another Fun Chat

Thanks to everyone who stopped by to discuss cooling vests, disease modifying drugs (DMDs), the release of the Delaware Anthology "MS = My Success" (more below), and World MS Day. Thanks to Shauna, who made us an international chat just in time for World MS Day. In case you couldn't make it tonight, here's what you missed:

We discussed cooling vests and neck wraps; both have been used with good results. I received a cooling vest in the mail today, and am still getting used to it, so it was helpful to have some people to talk to about this subject.

We had quite a long discussion about DMDs, thanks to Cathy who is an advocate for Tysabri. Then TheQueen stopped by to report on her participation in a trial for oral FTY720, aka Fingolimod (a pill!). And Shauna was in the original trials for Avonex, and continues today as part of the Phase IV, post-marketing, trials.

We talked about the May 27th event to be hosted by the National Multiple Sclerosis Society Delaware Chapter to launch the release of its anthology, "MS = My Success, A Collection of writings by Delaware residents living with or otherwise affected by Multiple Sclerosis." This event will include readings by the various authors (including three of tonight's chatters: me, Faith, and Sonia, plus others who weren't at the chat). Event will be at the Newark Public Library, 7-8 pm. Please stop by if you are in the area.

NEXT CHAT: 12 June 2009

Delaware Area MS Chat This Friday: World MS Day

Delaware Area MS On-line Chat
Friday 22 May, 7:00 - 9:30 pm (east coast time)
Chat Topic: World MS Day

Did you know that next Wednesday (27 May 2009) is the first World MS Day? Are you planning to do anything? I am. So is the Delaware Chapter of the NMSS. I will tell you more about this on Friday.

Let's chat about this and anything else that comes up (like cooling vests!).

If you want to connect on-line with others with Multiple Sclerosis in Delaware and surrounding areas, please join us THIS FRIDAY any time between 7:00 - 9:30 pm. Show up when you want, leave when you want. Chat from the comfort of your own home or even in your pajamas.

To attend, go to the right margin of this blog and click on the coffee cup or "Enter My Chat Room." Then follow the directions. (You must have Java enabled.) I'll see you in the room!

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Do You Use a Cooling Vest? Please tell...

We've had two hot and humid days, and I'm feeling the effects. My fatigue has been more severe than normal and my right leg feels like a concrete block. NMSS offers tips to stay cool on their web pages as do lots of other MS sites. These tips normally help, but I seem to be struggling more than usual this year, so I've decided finally to get a cooling vest.


But which one to choose?????


The MSAA offers cooling vest kits as part of their Cooling Equipment Distribution Program at no charge, but I don't need the financial help right now, fortunately, so am researching which vest I want to purchase.


There appears to be different type of vests and lots of choices and I'm confused! So if YOU have a vest that YOU like, please tell me about it.


Thanks!


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For Family Members: Pix from Mom and Tina's Visit

Here are a few pictures of Mom and Tina's recent visit (yes, I look exactly like my mom). We had a a lot of fun! It was so nice to spend time with them. We made Mom a big brunch on Mother's Day, visited Longwood Gardens in Kennett Square, PA, (I was able to rent a scooter), and shopped at the local cupcake store. And, of course, we had at least one "photo shoot." The weather was perfect and we watched a LOT of backyard birds, ducks, geese, herons, and egrets. Tina and Tedd took great pictures of flowers and birds.

If you click on a photo, you will see a larger version.

Here are some pictures from Longwood Gardens - I loved that scooter! I now want to buy my own for every day use. There are too many pictures of the beautiful flowers so I'll just show you one of the main fountain.

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Catching Up is Hard to Do

I've been busy for a few weeks with a vacation and a family visit, both of which were wonderful (more later). But now I find myself playing catch-up with hundreds of e-mails and blog entries. It was nice having a break from the daily routine, and using all my energy in a few short days was well worth the price (I'm now exhausted and unable to walk well). I'll be back soon!

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Thanks, Chatters, for Another Fun Night

Thanks to everyone who visited the Delaware Area MS Chat room! This was a very free-form night of just connecting with old friends and chatting about whatever came up. I think we even invented our own word game.

I'm keeping this post brief because I have "Company Coming!" LOL!

Next chat: May 22

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Delaware Area MS Chat This Friday

Delaware Area MS On-line Chat
Friday 8 May, 7:00 - 9:30 pm (east coast time)
Chat Topic: Company's Coming!

I am expecting out-of-town visitors this weekend, as may be true for some of you. People who don't see me very often tend to have preconceived ideas of my physical condition, and usually insist that I sit down and do absolutely nothing. Or when they see that I "look so good," they don't understand why I can't do as much as I look like I can. Trying to explain our condition and our needs can be very challenging, especially if symptoms are invisible.

How do you explain your situation or needs to other people? Are you good at it or is it awkward for you?

Let's chat about this and anything else that comes up.

If you want to connect on-line with others with Multiple Sclerosis in Delaware and surrounding areas, please join us THIS FRIDAY any time between 7:00 - 9:30 pm. Show up when you want, leave when you want. Chat from the comfort of your own home. You don't have to be from Delaware, but it helps if you know that it's a state in the US.

To attend, go to the right margin of this blog and click on the coffee cup or "Enter My Chat Room." Then follow the directions. (You must have Java enabled.) I'll see you in the room!

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Do You Have a Pulse?

I saw the neuro this week, and he suggested that I consider having the regular, monthly IV steroid treatment, aka "pulse" steroids, maybe in the future. I'm wondering if I should... I saw Diane J. Standiford's recent post on the topic of getting pulsed at http://dj-astellarlife.blogspot.com/2009/05/reduce-ms-disease-more-and-get-pulsed.html and decided to ask about it myself.

So I'm asking you if you are on the pulse steroid program.

1. What symptoms are you trying to control, or is it just an overall maintenance?
2. What side effects did you experience when you stopped?
3. Has anyone heard of the oral version (add a vial of something to a drink)?

Thanks!

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Where's Phil?

On March 28th, Phil Keoghan from the Amazing Race began riding from LA to New York to support Bike MS and raise money for the MS Society.

Today (1 May), he's in Pennsylvania. If you want to track his whereabouts (because it's fun) you can go to http://caflor.net/iosix/maps/phil.html

Here's his website: http://www.philridesacrossamerica.com/about_ride.html

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MSAA's Life Coaching Blog

As some of you know, I went on disability last year. Having been in the workforce for over 30 years, I no longer had career goals, education goals, schedules, and routines. Some would say that is a good thing, but I thrive on goals, objectives, schedules, projects.

When I saw this change coming, I created plans to get involved in volunteer and social organizations, like my church and the various MS support groups. I planned to have regular lunches with friends to stave off isolation.

Unfortunately, the reason that I'm on disability (FATIGUE) became the same reason that I could not carry out my new plans to volunteer and socialize. I was stuck. I was lost. "Now what?" I wondered. "Is this how I have to spend the rest of my life?" I started teetering on the edge of a very deep, very dark pit.

A few months ago I found the MSAA's Life Coach program, a FREE service to assist people with MS. All sessions are conducted over the phone and through e-mail so I don't have to drive. And the coach, Anne Marie, has been WONDERFUL. She continues to help me through this transition in my life, and I'm very grateful. Anne Marie led the recent discussion groups about Asking for Help that we discussed in a recent DE Area MS Chat.

Now she has a blog at http://blog.msassociation.org/ and I encourage everyone to check it out.

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Thanks to the Friday MS Chatters!

Thanks to the dozen folks who wan- dered into the Dela- ware Area MS Chat Room last night.

What a fun and interesting bunch of people! We had two new chatters including Weeble and Chris. I hope we didn't scare you away and that you'll come back on May 8th!

Throughout the night we discussed MS-Free Zones (MSFZs), the place where MS is not welcome in our lives. We compiled a diverse list of ways that people get away from MS (even for a short time) including yoga, music (playing it and listening to it), watching TV and movies, and playing trivia games. We discovered that, in some cases, one person's MSFZ is another's stress zone. That applied to travel, exercise and cooking. For some of us, blogging and chatting give us great pleasure even though we are discussing MS. So our MS-Free Zones are as unique as each of us.

In addition to MS-Free Zones, we had a very frank discussion about bowel and bladder problems. I'm glad we created a Safe Zone where people felt comfortable discussing this uncomfortable issue.

I can't wait to see what happens at the next chat! Please join us May 8th between 7:00 -9:30 pm (eastern time).

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MS Chats Resume This Friday: Finding an MS-Free Zone

Delaware Area MS On-line Chat
Friday 24 April, 7:00 - 9:30 pm (east coast time)
Chat Topic: Finding an MS-Free Zone
(Do you need a reminder? Leave a comment or send me an e-mail and I'll send a message on Friday - but I'll need your e-mail address.)

After a few weeks off for Spring break, the Delaware Area MS chats are back!

Although the chat room took a break, MS never does. That's why it is so important to find a way to get a respite from this disease, even for a moment. Rosalind Kalb (PhD and well-known author of MS books including the "Knowledge is Power" series) refers to the part of us that MS can't touch as our "MS-Free Zone." She encourages us (and our caregivers) to carve out a time, a place, a way to stop thinking about it for even a small period of time to keep a sense of self.

Do you have a way to escape for a little bit, like immersing yourself in a book or a hobby, engaging in prayer or meditation? What techniques do you use to distract yourself for a while? Bring your thoughts and ideas to share. (Cookies are a welcome distraction, hint hint!)

Let's chat on Friday about this and anything else that comes up.

If you want to connect on-line with others with MS in Delaware and surrounding areas, please join us THIS FRIDAY between 7:00 - 9:30 pm. Show up when you want, leave when you want. Chat from the comfort of your own home.
To attend, go to the right side of this blog and click on "Enter My Chat Room" then follow the directions.


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But Not Today

Today was a good day. It didn't start out that way. Alarm goes off - grump - hit snooze - alarm goes off again - grump - hit snooze harder. It's raining. Grumble. Straight into the shower. Ahhhhhh. Feels nice. Blow dry my hair. Ooooohhh! Looks nice! Throw on a sweatshirt. Looks like crap.

After days of pondering, I sign and fax permission to publish one of my essays in an anthology (thanks, Sonia). Angst! I don't like the piece, it's not my best. Oh hell, my hair looks great so I just push send.

One piece of toast, brush my teeth again. Off to dentist. Routine cleaning. Oops, what's that sensation? A cap is loose, we can fix it now. But I have a lunch date. No problem. Hmmm, won't come off easily, need to come back. Have a filling that needs repair so we'll do them together next week.

Home. Decide to change my clothes for lunch. I don't go out much, and here's a chance to wear a nice outfit. Turtleneck because it's chilly and rainy. Hey, whatever happened to that green over-shirt that I bought at the Fair Trade store downtown? Found it. Nice. Different.

Ladies' Lunch Bunch once a month. Don't feel the need to use a handicapped parking spot today. Drizzling and very windy. Walk around to the front. Mmmmm, smells good in here. There are my friends! Good to see you. Ooooh, Chris brought her new baby. Hi Pam! Missed you last month. Lots of catching up, laughing, and good food. Someone offers Fair Trade white chocolate with strawberries and it is delicious!

Hey, across the street is that Fair Trade store owned my friend. I'm not busy. Jingle goes the bell over the door. Nice music. Oh, so many new items. Beautiful colors. I buy myself a bar of white chocolate with strawberries from Ghana, an apron from Indonesia (with pockets), and a sage green tea pot with four cups from Vietnam. Giggle with a few other Ladies from lunch who popped in, too.

Didn't go straight home. Picked up a light fixture from a specialty store. Bought a few bottles of wine. Checked out a new grocery store. Finally home. Put the tea pot in the china closet (see picture). Beautiful! The Husband puts up the new light fixture. Bright! He makes scrambled eggs for dinner. Yum! Finished watching Jeopardy! and I'm still going strong. I'm even blogging again.

On any other day, the dentist visit would wear me out completely. On any other day, the Ladies' Lunch Bunch would wear me out completely. On any other day, running errands would wear me out completely. On any other day, the rain would have me leaning heavily on my cane. On any other day, I'm just waiting.

But not today. Today reminds me of what life used to be like. Nice!

PS
From Wikipedia: "Fair trade is an organized social movement and market-based approach that aims to help producers in developing countries and promote sustainability. The movement advocates the payment of a "fair price" as well as social and environmental standards in areas related to the production of a wide variety of goods. It focuses in particular on exports from developing countries to developed countries, most notably handicrafts, coffee, cocoa, sugar, tea, bananas, honey, cotton, wine, fresh fruit, chocolate and flowers."

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