Carnival of MS Bloggers #21

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Daily OM 
by Herrad

You may jump to conclusions today when interacting with others,

especially if you are assessing your exchanges from an emotional or biased point of view.

Perhaps you are feeling suspicious of other people's motives

or are making assumptions about how you're being received.

If this is the case for you today, it may be because your mind

is busy referencing the past and compelling you to get stuck in projections.

Consider focusing your attention on the present moment instead.

Paying attention to what's really happening, rather than getting mired in mind chatter,

can help you to think clearly and rationally so you can form appropriate conclusions.

Staying present allows us to process information rationally

during our interactions with people.

Being in the moment frees us of the mind's tendency

to dip into the past or jump ahead into an unknown future.

We can listen attentively and take what we see and hear for what it is in its own context.

The objectivity this affords us allows us to come to more pertinent conclusions.

We can also respond to what's in front of us rather than

react from past experiences, our fears, or conditioning.

Stay present and absorb what is happening to you right now,

and you will be able to honestly assess your situation

and draw more accurate conclusions.

In a post which made me laugh outloud, Mandi of Anatomy of Restlessness shares  
An open letter to Acme Syringe.

Dear Acme Syringe Company:

I am writing to tell you that I have used your syringes for years, and I would like to ask you for a syringe sponsorship. I believe that I have excellent qualifications, and I will be a good representative of your company. A far better representative than the folks who abuse your syringes and use them multiple times to inject illegal substances. Attached is my syringe resume:

Allergies
One round of allergy shots 1x a week for 3 years
One round of 2 allergy shots 2x a week for another 3 years
4 skin tests, with about 60 needle pricks each (back and forearms)

Multiple Sclerosis (this is where it gets exciting)
Innumerable blood draws
almost 25 days of infusion with Solu-Medrol and IVIG
spinal tap (this one requires several little needles for numbing and a few BIG needles for drawing cerebro-spinal fluid)
injections of interferon every other day forever and ever
B12 shot

Thyroid
biopsy with several needles
more blood draw

Diabetes
I don't have diabetes, but I would definitely use your syringes if I were to get it.

Thank you so much for your time to consider my request. Please feel free to contact me with any questions or comments.

Sincerely,
Mandi

ps: I can definitely get you lots of photos of me wearing a sports bra in extreme locations using your syringes.

Hey - DID YOU KNOW MONTEL WILLAMS HAS THAT? asks Bald Ben.

Would the real Bald Ben please stand up......

I never much thought of myself as a "blog person". Sitting here writing some sort of blather about myself for others to read never really seemed of much interest to me. Then my wife got pregnant. One might ask, "Hmm, how does your wife getting pregnant lead you to blogging? I would think you would have a lot more to think about?"

Your question would be a good one, albeit a little short sided, but a good one nonetheless.
You see, my wife wasn't only pregnant with one baby, but she was pregnant with two babies! Yep twins. This as I have been known to say is proof there is a God and he has a very dark and wicked sense of humor.

Picture it: It's a lovely day in heaven. Large white billowy clouds, soft harp music in the air, well manicured lawns, you know....heaven. Standing by the pearly white gates, God, calls all his buddies around, "Buddha, Moses, Vishnu, Jesus get over here." As they gather they realize that God has got a real rip snorter and He can barely hold back his laughter.
Now, God has been known to tell a good yuke from time to time, (i.e.=2 0floods, pestilence, duck billed platypus) but if he already can't contain himself this has got to be good. "Wait till you see this," almost bursting in hilarity, "See that Bald guy down there?"
"Yeah" They reply choir like.

God bellows out," allakazam!"

ZAP!

Bald Ben's got MS.

God is rolling. He almost starts a thunder storm he is laughing so hard.

The other deities look at each other a bit confused. You see, Buddha never understood this whole incurable disease bit. He's more of a knock, knock joke guy.

Knock, knock…
Who's there?
Buddha.
Buddha who?
Don't cry, it's just me the Enlightened One…..

And Moses was still trying to figure out how the Jews, after thousands of years of persecution, were supposed to be the chosen people. Jesus, being the savior and all, meekly taps God on his great big omnipresent shoulder and says, "Dad, ummm, that wasn't really that funny." God, still laughing, eyes his eternal Son and says, "Wait for it, wait for it...."

Another allakazam!

ZAP! Bald Ben is now the father of twin boys. All the deities break down in uncontrollable laughter at the great cosmic joke that was just played on the poor kid who lost his hair when he was 16. If you listen real close, you can still hear their eternal mirth.

But I digress, I started the family blog (It's linked to on the left20there. Two babies, one Bald guy, and a woman who can't tell the difference: a love story.) Simply because I was feeling a bit lazy and antisocial. "Hold the phone," I hear you say, "Lazy and Antisocial? Blogging can be a tough hobbie, and it ostensibly connects you to thousands of people at one time."

Ahh, you are right. If done with a little bit of heart and elbow grease blogging can be a full time job. However I am not looking for anything permanent thanks, just a little part time thing on the side will do just fine. The laziness and antisocial behavior came out of the fact that I didn't feel like having to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum. Oddly enough despite the blog, I had to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum.

However something odd happened along the way,

"Did you step in Dog poop?"

For the answer to this question AND MUCH MORE, visit Bald Ben who says, "...I will not hide. I am Bald Ben. My view points, my thoughts, my opinions are all free for the taking. I stand behind what I say, that's why I say it. Otherwise this would all be a colossal waste of time."

This concludes the 21st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 23, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 21, 2008.

Thank you.

Comments for this post.

Carnival of MS Bloggers #3

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

In Living with Multiple Sclerosis, Anne shares some of her history in and provides reasons why she deals with it the way she has chosen.

"for my husband and my two sons (the only members left of our small family).... for all those friends/acquaintances who tap my knowledge for their personal dilemmas.... for all those who benefit from my educational and disability advocacy.... for my own continuing education of things that matter to me most. And I am still here, after all these years - good, bad and indifferent - and living with Multiple Sclerosis."

For every MSer, the time will come when you must decide whether To Tell or Not To Tell. Depending on what stage of the disease you are in, it is an important question to consider. Anne, from Disabled Not Dead shares her experiences, including some of the disappointing outcomes.

"After dinner, we sat with dessert and the conversation came up again. I then told her about MS and how it affects me. She said, "Anne, I was afraid you were going to tell me you had MS. My mother died of MS." I told her that people rarely DIED of MS, that usually it was a complication FROM MS that killed MS victims. We talked as we cleaned up the kitchen and she turned to me and said, "I don't see how I can remain your friend. I saw what my mother went through and I don't want to see it or go through it with you. I just can't handle it, Anne."I told her that she wasn't as good a friend as I thought she was and we said goodbye and left. We have never seen them again since."

Having chosen "to tell" Callie, blogging at MS My Way, received numerous questions from her co-workers who were curious to know How Was I Diagnosed? Apparently her experience is quite typical and the details may sound familiar to those who have been there. Certainly, go take a gander and see what Callie has to share.

So How Did I Get from There to Here? asks Mandy from MS Maze.

"Five years ago, I had a well-paying full-time job with benefits including health insurance, 401k, a bonus, paid holidays and sick days, and three weeks paid vacation. I had responsibilities I took seriously, thought nothing of putting in extra hours when required and occasionally traveled for business. I was energetic and enjoyed my work. Today, I have a part-time, hourly-paid job with no health benefits, no 401k, no paid holidays or sick days, no paid vacation, and no reason for a bonus.

So how did I get from there to here in five years? A few things contributed, but multiple sclerosis is THE reason I find myself in this position...."

UK blogger, Shirl contemplates "Sleep, Perchance to Dream - for England?""Please excuse the mix of sayings here. Nothing wrong with sleep in itself. It's a good thing. But sleep for me has become a bit too much. As in, I'm having an excess of it and not enjoying it. So, it's for England. As in boring sex.

Tomorrow is another day...except it's here already...where did yesterday go?"

Blogging at Sunshine and Moonlight, Kim describes her frustration as she wonders if she's Robbing Peter to Pay Paul due to her MS.

"...I told the hubby that I felt I was losing myself. Each day, little by little, I was changing. I didn’t like what I saw in the mirror that morning – a tired, young woman, whose spark was quite dim. A young woman who was robbing Peter to pay Paul many different times a day.

I told him that I feel different; that I’m not the bubbly and silly Kim any longer. This, of course, worried me deeply. I will not let M.S. take my spirit. I keep saying that sentence over and over again, but I realized this weekend that M.S. has changed me. So, like everything else, we talked it through."

What could be Scarier than Psycho?
...well a bathtub of course.

Concerned with the effect heat may have on her MS symptoms, Kim says, "I haven’t bathed in 63 days. I don’t use the Jacuzzi to actually “bathe” though, that’s the purpose of the adjacent shower. So, yes, I’ve showered. I just haven’t enjoyed a relaxing bath in over two months."

At BugsBikesBrains, Shauna shares This is My Brain on Drugs ...including photos!! Her story of acceptance is inspiring.

"MS is uncertain, a characteristic about which we MSers like to complain. We don't know what each day will bring. You know what? I realized that this characteristic is something I should celebrate. I may not know what's going to happen, but it just might be great. And I know I have many tomorrows left.

So as much as I, like the rest of humanity, don't like change, I will celebrate my ever changing disease and do what I can do to make a difference."

Jim shares DEEP Thoughts regarding living with disability (deafness), disease (multiple sclerosis), and a spiritual relationship with God in Sunday Morning Spiritual Thoughts: Striving through bumpy road.....

"God's knowledge of my own discouragements are more than just knowledge; His knowledge is more personal, warm, and compassionate. He knows every pains I have been facing. Inside me, I know I am not alone because He is with me. Making a strong conviction to decided on what is affecting me, my attitude is to move on by living in faith. Accepting God's purposes and plans of God however He sees fit in my life. My faith is to believe Him and allow Him to adjust my life according to His will. I am to be aware of obstacles and hindrances I would be facing throughout my life that will throw me off balance. What should motivate me is like an athlete who trains for the Olympics to win a gold medal with such self-discipline and willing to face the challenges."

Jim's blog has become one of my personal daily reads.

So finally, you are reading this for many possible reasons. Perhaps you have MS or know someone living with MS. You enjoy discovering new blogs. Maybe you are a healthcare or policy expert.

Recently here at Brass and Ivory, I asked the question Why My Blog?!! and wondered how this blog will make a difference.

"For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultanting company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way."

So I thank you for helping me to understand the 'whys' and envision the 'hows' of communicating here, online, for myself and with each of you.

The next Carnival of MS Bloggers, a valentine special, will be hosted here on February 14, 2008. Submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 12, 2008.

Thank you.
Comments for this post.

Images from National Gallery of Art, Washington, D.C.

Carnival of MS Bloggers #1

Welcome to the new Carnival of MS Bloggers, Edition No.1

I'm excited about the many MS Bloggers who have responded to share their stories and invite you to visit their blogs.

So sit back, relax, curl up with your computer and a favorite beverage. Enjoy.

¤¤¤ Multiple Sclerosis ¤¤¤

Joan Wheeler presents her 13-year journey from initial neurological event to eventual diagnosis in My Multiple Sclerosis e-Book. This is her story (which I thoroughly enjoyed reading.)

Joan blogs at A Short in the Cord and reminds us that everyone with MS has very different experiences and thus has his own story to share.

¤¤¤ Opinion ¤¤¤

Writing at Self-injecting Chinese Hamsters since 2007, a newly-diagnosed MSer, simply known as -A, short for Anonymous, presents Why Baking Cookies is Not Going to Cut It.

Building on Susan Sontag's legacy in terms of analysis of illness, specifically "Illness as Metaphor," -A takes a brief, first look at MS and how it, like cancer for Sontag, has come to serve as a trope for various contemporary social "evils."

An Excerpt from Susan Sontag's Obituary

(via Los Angeles Times Dec 28, 2004)

In 1976, at 43, Sontag discovered she had advanced cancer in her breast, lymphatic system and leg. She was told she had a one-in-four chance to live five years. After undergoing a radical mastectomy and chemotherapy, she was pronounced free of the disease. "My first reaction was terror and grief. But it's not altogether a bad experience to know you're going to die. The first thing is not to feel sorry for yourself."

She learned as much as possible about the disease and later wrote "Illness as Metaphor," an influential essay condemning the abuse of tuberculosis and cancer as metaphors that transfer responsibility for sickness to the victims, who are made to believe they have brought suffering on themselves. Illness, she insisted, is fact, not fate. Years later, she would extend the argument in the book-length essay "AIDS and Its Metaphors."

¤¤¤ Life ¤¤¤

Victoria Plum, an ambulance technician from Berkshire, England (on this side of the big pond we might call her an EMT), presents Why can't I sleep??

Finding herself unable to sleep one night during her enforced time off the road due to a yet-to-be diagnosed medical problem, what does Victoria do?

Well, she does what many of us have done....she starts a blog.
Victoria shares her MS journey at the aptly named blog Victoria Plum - Technician!.

¤¤¤ Multiple Sclerosis ¤¤¤

Recently diagnosed with multiple sclerosis in November 2007, Kimberly Fabrizio is thankful to have had One Month Free of Hypochondria.

Kim blogs at Sunshine and Moonlight -- A Journey with Multiple Sclerosis and says, "Yes, I’m living in reality….Honest," and shares some ideas about Staying Positive without Mindless Optimism.

She also has discovered a new way to relate to her father, especially whenever she's, uh, like saying, "You know -- It's that....that....THING!"

¤¤¤ Life ¤¤¤

Although November 2007 was National Family Caregivers Month, we should take time to recognize the many things which our family members, friends, and caregivers do for us each and every month.

Mandy Crest blogging at MS Maze presents My Spouse, My Caregiver, a gentle testament to the many little things her husband does for her on a regular basis.

¤¤¤ Life ¤¤¤

Chris Tatevosian has gone beyond the blogworld and has written a book about his MS experience titled Life Interrupted, It's Not All about Me.

Chris shares his story regarding anger, frustration, rage, and marriage when a couple suffers the effects of multiple sclerosis.

No one should have to put up with that kind of behavior, especially your closest and most intimate friend, the person you love most in life. Yet this situation is prevalent among couples affected by MS. I have made my life an open book with the goal of helping others avoid making the same relationship destroying mistakes that I have me.

At his blog Defeating Illness, Chris primarily discusses issues surrounding his book.

¤¤¤ Multiple Sclerosis ¤¤¤

Richard Boughton reflects on the disease which is MS, as compared with other types of disease, in his post Blades of Grass found at non-idiotic people who happen to have MS.

Perhaps it is time to amble a bit more as we go through life, no matter what the weather. Goals are fine, achievements are dandy, but sometimes we can fail to appreciate the wonders of the process, the myriad sights and sounds, faces and places that are the fabric of our immersion in that which is our life. No matter what else it comes with, it comes only once—blades of grass one day, fuel for fire the next.
[Still] ... I'll choose MS.

Richard blogs at KEBENARAN - THE TRUTH.

¤¤¤ MS News ¤¤¤

Ann Sawyer and Judi Bachrach join blogging forces to discuss The MS Recovery Diet, a book which addresses the inflammatory effects of nutrition in diseases such as multiple sclerosis.

Ann provides answers to a reader's questions regarding the book on her blog, while Judi answers some questions regarding a vegetarian approach for her readers.

¤¤¤ Opinion ¤¤¤

As nutrition truly is important in maintaining a healthy body, Lisa Emrich at Brass and Ivory shares a recent experience she had after her rheumatologist suggested fighting systemic inflammation by fighting abdominal fat which produces cytokines (ie. TNF-s and Interleukin-1). The latest disease-modifying drugs used for rheumatoid arthritis suffers seeks to counteract the effects of these cytokines, but those of us with MS are prohibited from using these drugs due to neurological side-effects.

So in fighting abdominal fat, a natural approach would seem most logical. However, caution should be taken for those sufferers who seek the guidance of 'natural health' practitioners who may (or may not) have a larger agenda in play than your greatest health.

Lisa shares her experience with one local doctor In the Pursuit of Health & Wellness - Is Alternative Medicine Complementary?

¤¤¤ MS News ¤¤¤

Stuart Schlossman of Stu's Views and MS Related News invites readers to visit his blog and to subscribe to his weekly MS e-Newsletter which is presently received by over 4000 people globally.

Stu's blog is not the typical 'bloggers blog' but is an archived database of over 900 MS-related articles which give the viewer, the patient, and/or caregiver a place where they can learn more about Multiple Sclerosis.

¤¤¤ Multiple Sclerosis ¤¤¤

The next Carnival of MS Bloggers will be hosted here again on January 17, 2008. Submit a post from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 15, 2008.

As the carnival develops and participation increases, I hope to include more personal views and presentations on any number of topics and less quasi-commercial promotion.

Thanks for visiting and happy blogging in the new year.

Thank you.
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