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.