Category Archives: Blog

Can’t Spell!

Bill let me know that one of the words in my last post title “The Return of Autumn and Volunteer Work ” was spelled incorrectly. I’ve just fixed the spelling of “autumn” and apologize vehemently for the mistake. Apparently the spell-check only fixes the text. Sadly, I had looked at the title numerous times and didn’t even notice until he said something.

Here’s to a reallllllly boring post with shades of OCD. No comments necessary….

The MS Blog Becomes the MS Website

I’ve really enjoyed blogging about my MS journey. It’s therapeutic to just explain all of the weird, scary things that have happened to me. And to know that others, especially from the blogging community, have read and understand. So I’m a little sad that my personal multiple sclerosis story will now be put on hold as the rest of this MS website begins.

This site will start branching out into different areas, mainly: articles about the types of MS, medications/treatments, helpful living tips, bios on famous (and not so famous) people with MS, latest MS news, healthy/ easy recipes for better nutrition, and so on. There will still be blog entries about my life with the MonSter, but the bulk of the website will now begin. Lots of key word optimization, high repetition of the words “multiple sclerosis” and “MS”, selected advertising that is appropriate for the content, and tons of information that is probably too elementary for the veteran MS blogger. And dare I say MUNDANE? So as not to preach to the choir, this post explains the turn of focus and the forthcoming articles and info for those searching the internet for MS information and news. For newbies and people who basically just want the facts. Kinda boring, yes, but I actually love writing about health topics, and the need for researched information that isn’t presented in a cold, clinical manner is so important.

Feel free to continue to visit, because I’ll still be doing some blog posts, but this is a forewarning so as never to patronize readers or bloggers. And yes, it’s always free to read if you just don’t click on the ads! I will still enjoy reading others’ blogs, and have compiled my own group of ones which are heartfelt, informative, hilarious, and multi-faceted. I admire veteran bloggers because I honestly cannot even keep a steady personal journal— I’m lucky if I check in with myself once or twice a month! So I’m happy that I can provide links to good blogs.

And so starts the long, arduous process of building a free-standing website. Really a labor of love.

MS Sunny Day

Google Images

Hallelujah! It’s a nice, non-humid day in New Jersey. I volunteered at the library for 2 1/2 hours, looking up the age/grade levels at the Amazon and the Barnes and Noble websites for the donated “Sparks” program books. The volunteer coordinator said they sent their 1st batch of crates to the 2 social service agencies, where kids waiting to be placed in foster care can choose 3 books and receive backpacks. I also put “This book belongs to_________” plates in the front of a bunch of books. This program is great, and I’m glad I started working on it during its infancy. I’m finding that if I take my medication earlier in the day, I don’t get “wake-up” fatigue, so I have been able to get to the library 4 out of 5 times so far. Not bad!

So I’ve been getting myself out and the next thing to tackle is a yoga class. A woman is holding them at a first aid building down the road. Sounds like she has worked with people with diminished mobility (she has had classes where people use chairs for aid.) I’m gonna try the Tuesday evening class first, because I really am still a night owl.

We’re probably gonna go see the new Batman movie sometime this weekend. And I’m visiting my friend/old roommate and we hope to hit the LL Bean store (only one in this neck of the woods.) I will go slow and rest when I should, even though I don’t want to.

Peace out and enjoy the weekend… Jill, if you’re reading this post, we’re trying to get to the aquarium before you go back to teaching. We want to get Steven there, because he had such a great time last year.

‘Bye!

PS: Look for information on MS and seeking emotional therapy in the next post.

Multiple Sclerosis and Blogging

Microsoft.com

Okay, I’ve been blogging now for almost 2 months. As a writer for a women’s health website, I have a tendency to report the facts, mainly from the 3rd person perspective. I research health topics and collect my sources to document at the end of the articles. I have journalistic instincts in my blood (probably dates back to college, where I wrote plenty of papers towards an English degree.) I learned how to write from the opposing view (playing devil’s advocate?) I even wrote a (very bad) screen play! But blogging for the public eye……This is quite new.

What I’ve learned so far from this experience is that I am still quite a journalist and my site is a bit of a hybrid. I like to think of it as a website with a blog format. My husband Bill is the website development nerd: he knows how to create them with HTML, Frontpage (a formatting device), search engine optimization, and reciprocal linking. I am more of the creative force, concerning myself with the writing, photo selection, internal linking, and commenting. Together we’ve created a website which happens to have a blogging format— WordPress. A couple of times I’ve had to tone down his entrepreneurial instincts with the plea, “It’s a website, but it’s about a personal topic— people’s health.”

That said, I’ve actually found blogging to be a cathartic activity. I’ve posted at MS message boards before, under the anonymity of a user name. Here, my MS story is open and available to many people— strangers, loved ones, new blogging acquaintances. It is a place to drop some guard and post what’s really on my mind. Yet the journalist in me still tugs in the direction of business. So a hybrid website it is. A touch of personal with a dash of unbiased journalism. And of course, search engine optimization….

What I’ve found and liked in others’ multiple sclerosis blogs are the real, raw emotions. I’ve (slowly) read a few other sites and have found them so open and honest. Writers blog about their symptoms, their limitations, their strengths, and their frustrations (usually towards the health care industry.) I’ve read some poignant poetry, some gratitude lists, a bit of news about the gay and lesbian communities, and rants about the US’s sh-tty health system and insurance industry (and Canada’s more universal coverage— Michael Moore: you were right!) I think one of the most touching blogs is one in which the writer vents but does not comment or link to others. Almost a private diary, but with the benefit of letting others listen.

So I think I’ll always have a bit of the journalist’s eye, deciding on key word density and internal links that make articles and blogs easier to find in a search engine. Can’t help it. My other health site’s pretty much brainwashed me into doing this! But I’ve learned from other MS bloggers the joy and freedom of letting down some guard and writing from the gut. For such reads, it’s good to start at the MS Carnival of Bloggers homepage, where you will find links to many bloggers and their personal MS stories.

To wrap things up, I like to think of a blog as a loose-leaf notebook, with many pages in chronological order. Now, imagine opening up that notebook on a windy day. You’re maybe trying to remove a page from the binder, and whoa!—- they start flying out everywhere. But think of a person stumbling upon one of those pages and being touched by what you wrote. Another person comes across a tattered page, found on the street many miles away. Blogging is like sending out pages of a private notebook to the wind. No matter what the format (journalistic, personal, ranting, prayerful), the end result is touching a complete stranger’s life and making them feel a connection.

Weekend Getaway Benefits All

Seashore, Microsoft.com

I just came back from a much-needed, long weekend trip to Sea Isle City and Atlantic City, NJ. We had a family gathering at the shore with my mom’s relatives and saw some people we haven’t seen in a couple of years. Lots of fun and an appreciated change of scenery.

Both my family and I benefited from this visit. I learned from them that I need to push myself a little bit to get up earlier and do a little bit more (I have gotten slightly apathetic about going out or making a schedule this summer, probably because of the heat and the recent relapse.) Sometimes I have a problem deciding what I’m up for and what’s too much. Then I end up doing nothing. This kick in the butt has energized me and made me realize I just need to slow down but I don’t have to completely stop: people are becoming understanding of my limitations.

My family, in turn, has realized that I cannot do everything and run around wearing myself out like a crazy person. After getting up early and going with the flow for 2 days, I got up yesterday (after a Betaseron shot night) and was sluggish as we went to Atlantic City to gamble. My mom kept walking too fast, trying to squeeze in too much, and I reminded her that I am still slow and cannot walk all over creation. She’s starting to get it. Today we went to breakfast, then relaxed on the balcony of our rental and just enjoyed being. I didn’t overdo it and was able to make the drive home without collapsing at the wheel.

It’s hard to adjust to an ever-changing level of disability. With MS, it’s hard to tell what is transient and what is permanent. I am retraining myself to go forward and try to do things, but rest if I need to. My loved ones are starting to understand that although I used to be able to rebound pretty well from relapses, this might not always be the case, and to allow me my limitations and slower pace. My multiple sclerosis can set the pace for everyone and maybe help us all reserve our energy and not foolishly squander it. Maybe.

Air Conditioner Blow-Out

As if life couldn’t get any sillier at our house (general financial strain, a recent increase in our health insurance premiums, Bill’s stressful financial job, my lead limbs), we woke two nights ago to the sound of one of our air conditioning units completely fizzling out. And of course, this was the newer of the two. The rest of the night the older, on-its-last-legs unit sputtered out cool air as we hoped it, too, wouldn’t croak.

Last night we trekked to Walmart and got a new unit. Doesn’t it always seem like these kinds of annoying jobs need to be done when it’s 95 degrees and 95% humidity? Never in the spring or fall, when it would be easier. I think back to before we were married and how we did the same thing out of necessity at my old apartment. Guess necessity is what gets our butts moving!

I’m happy to say that we now have a new, functioning air conditioner, and I’m thankful that in New Jersey, the heat wave is usually just a summer experience. Just like in other aspects of life, it could always be better, but it could also be much worse.

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