Carnival of MS Bloggers #71

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

Take Time in Life with or without MS

Slow Down!

by Laura of Shine the Divine

Heart shaped stones we found walking along the Ashtabula River.

SLOW DOWN! scream my neurons. And what choice do my limbs, my voice really have? None. My mind has a choice to make however; be miserable and angry because this is NOT how I want my body to be or sit, listen, breathe, observe, appreciate, accept the gift of this moment just as it is.

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We are back from our last bit of traveling for the summer. In my opinion, Northeast Ohio is the epitome of slow living.

Rosie driving great-grandpa's 'ol Case tractor with Gordon's guidance

Lily Pond @ my brother-in-law's house

Gazing at the Ashtabula river from one of many covered bridges in Ashtabula County, OH

Friendly clipeared/hornless goat at the County Fair, Jefferson, OH.

So it was sort of ok that my MS decided to kick it up a notch and say "hello, ummm, you know you still have a chronic illness, right?" before we left last week and on and off throughout our visit.
On our way home we stopped at Niagara Falls and enjoyed the majesty of the rushing water.

Gazing at the falls is a timeless experience.

Yet another reminder that sometimes it's best to slow down and witness the beauty we miss when we are rushing.

Driving home from Ohio through New York and Massachusetts gave me plenty of time to appreciate the country side and the skies (it's a 12 hour trip, we brake up into two days.)

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Of course I wish that now that we are home again my MS symptoms would kindly knock it off already!

And with this thought I must gently remind myself about my choices: be miserable and angry because this is NOT how I want my body to be or sit, listen, breathe, observe, appreciate, accept the gift of this moment just as it is.

Sitting peacefully seems like a pretty good idea. I'm feeling deep gratitude as I write this, because truth be told, I am still getting out a bit with a commitment to rest in between. (Haircut yesterday and shiva call for a friend.) Mostly I tell people I'm feeling well when they ask, because who wants to hear "Well actually I feel like crap, but here I am anyway:)" and honestly, overall, I DO feel well much of the time...So I don't think this is another exacerbation in progress, or maybe just really minor one? Because despite the difficulty with speech and walking on and off (can't access words, or make my mouth form them and release them, plus the accent is back and shaky legs that don't want to support me or lift up and move and then just as mysteriously my neurons "come back online" again) Most likely just MS being MS with surprising ups and downs. I know my doctor says this is NOT supposed to happen on Tysabri, except for heat or exertion creating pseudo exacerbations, but I dunno, I've been doing my best to stay cool in our air conditioned bedroom and except for one day when I walked 2 miles a few weeks ago (that was amazing!), I don't think I'm exerting myself. Unless of course hanging out with my teenage daughters, visiting relatives, being pushed in my wheelchair when it's too hot to walk and sitting in a car for hours on end counts as exertion? Maybe. I'm trying hard to figure out the balance of rest and moving through my life. So we'll see. I have an MRI scheduled for Friday evening. (Needed one anyway because of being on Tysabri, so the timing is good).

Thank you everyone for your thoughtful comments, prayers and well wishes. Although I've been horrid about responding, know that I read everything you write and feel immense gratitude for your support.

gentle steps,
Laura

Went Downhill and Can't Get Back Up

by Maryann

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

MS Chronicles

A new website/blog for the MS community.  "These are stories by MS patients for others with MS, their caregivers, friends, and family. This blog will tell the stories of what it's like to have MS--whether they are happy, sad, courageous, or ordinary stories. Become a participant and join in the story telling by contacting Ann at ann67p@gmail.com.

 

This concludes the 71st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 23, 2010. 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, September 21, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #4 - Valentine's Special

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


Today is Valentine's Day -

A day of flowers and hearts,

chocolate and cupids,

gushy proclamations and

tender whispers of devotion.

In other words -

A Day of Love. Love for your sweetie and love of yourself.

So what's the first thing that comes to mind when you think of romance?

Really? Are you sure?

See, I thought you'd say sex. Hmmm. I'm usually a pretty good mindreader.

In honor of Valentine's Day, Shauna starts off the week discussing a couple of sensitive subjects - Penis, Vagina, and Breasts - in addition to SEX. But what does a discussion of sex and sensations have to do with MS?

"One of the first sensations we have as babies, is the sensation of touch. In fact, the earliest sense to develop in the fetus is the sense of touch. Human babies, and other primates have been observed to have enormous difficulty surviving if they do not have this sense. As well, if babies are not touched and held, they have developmental difficulties.Touch is the most basic part of a sexual relationship. We don't usually just jump into sex without some other physical contact. Touching, exploring, caressing; these are all part of an introduction to sex.

But what if touch hurts you?

For more, you simply must go read Shauna's post. It may not be pornographic, but it is certainly titillating. (Side note: Shauna claims that discussing sex is a sure-fire to increase blog traffic. I guess we'll see if she's on to something.)


Sex isn't the only subject appropriate for Valentine's - the love of friends and family is often irreplaceable.

Diagnosed the week before Thanksgiving in 2007, Daniel discovered just how "one man's struggle became a rallying point for dozens of others."

"I knew I had to tell people, but I didn't know how to do it. How do you tell people that you have known for your entire life that you have a life-long illness with such a stigma attached to it? How will they react?"

"My friends and family demonstrated shock, fear, sadness, love, perseverance, compassion, disbelief and just about any other feeling that one can experience upon hearing such news."

"One of the most difficult times in my life was met with so much love and an outpouring of emotion that it was incredibly overwhelming."

Daniel chose to tell others about his MS early on and received wonderful emotional support from friends and family. But how do you decide to share your diagnosis with others?

There comes a time when each person contemplates the big questions - "Who do you tell, when do you tell, why do you tell others you have MS?" - as discussed recently by Lisa.



A common symptom of MS which the books don't often discuss is GUILT. What do you do when faced with "MS and Broken Vows" as Mandy shares.

I vowed once again that it wouldn’t happen. Once again I broke those vows.

I vowed NOT to feel guilt at having MS, or for relapsing.

I vowed NOT to apologize to my husband for my MS.

I vowed NOT to speak of MS every day.

Five years into MS and I still cannot keep those vows.

A loving message for Valentine's Day from Mandy to her husband Jake.
More at MSMaze...


Multiple sclerosis becomes a lifelong companion - one which is always there for you even after you've both lost touch. But can we really ever forget about MS?

Searching for a solution to nighttime bladder problems, Kim may have found a practical solution - ear plugs. Curious? read more...


On this Valentine's Day when your partner snuggles up close and wants to know more about how you feel, or what exactly MS feels like, start with the question - can you imagine? Here's one of Joan's excellent examples.

"Have you ever had your leg fall asleep? Then you are familiar with that 'pins and needles' feeling. It usually passes once circulation is restored to the leg. Now imagine having that 'pins and needles' feeling in both legs constantly."

Continuing the sharing theme, Callie shares her list of annoying MS damages. Why an itemized list you ask? Just because she felt like it. Maybe you will see a part of yourself in her descriptions and know that you are not alone in this journey.


Choosing to view multiple sclerosis and his life experiences - no matter how devastating - as a gift, Chris discusses differences between a vocation and an occupation. Chris is the author of "Life Interrupted-It’s Not All About Me."

"By sharing my actual experiences with chronic illness and divorce I hope to provide others with the knowledge, awareness and understanding intended to help them avoid making the same relationship-destroying mistakes that I did by dealing more positively with the emotional and physical stresses put on a relationship when life is interrupted by chronic illness or disability."

Finally, in response to our recent discussions of love, depression, and loneliness, one reader shares valuable advice on choosing a Therapy Doc, or is that Dodo Bird? Thanks Doc.


The next Carnival of MS Bloggers will be hosted here on February 28, 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, February 26, 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.