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.

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