I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, September 25, 2008

Carnival of MS Bloggers #20 - The Invincibility Edition

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

"Strength and Invincibility"

It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

I looked down at my hand. Uh oh. The keys are by the computer.

This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

My son climbs up and looks over the other side.

"I dunno, Ma. I think I might get hurt," he says as he comes back down.

"Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audience.

As I am climbing up, I am thinking to myself "heh. You'd have never caught me trying this last year! I've become darn near invincible! Good thing I wore sneaks instead of flip flops."

And it was right about then, as I had one foot on the top rung and the other poised, mid-air to swing over the top of the fence, that I realized the A-frame was moving and it wasn't a side to side wobble. It was falling away straight out in back of me.

As I fell down onto the top of the fence which hit me right square in the gut, I remember thinking "glad we got that square topped fencing and not that real pointy stuff!" I balanced there for a couple seconds and then began to slide. The fence top caught under my shirt and the rough, unpainted wood proceeded to peel me like a potato as gravity pulled me down.

"YEEEEEOOOOOOOWWWWWWW!!!" was all I could manage to get out as I slid uncontrollably.

Then I realized, to my horror, the fence had scraped right under my shirt and managed to snag under my bra and I was hanging there, in front of the rush hour traffic with my shirt and bra over my head and my feet still off the ground.

Oh. My. God.

So many thoughts racing through my head as my hands worked madly to try and lift my entire body weight off the fence by my snagged shirt and bra.

"I hope my neighbor isn't watching!"
"I hope my son isn't watching...and scarred for life!"
"Man I don't want to find this on youtube!"
"I hope my brand new bra isn't all womped out of shape now! I paid good money for that!"
"That breeze feels kinda nice!"

It was probably only seconds before I was down off the fence. Then I was so busy surveying the carnage that I forgot I had an audience and when I remembered I was frantically trying to cover back up.

So how did we ever get the keys and go to Mom's that night, you ask?

My son, who had fortunately been spared from witnessing the whole tragic act, was around the corner wandering and goofing off, oblivious to it all.

When he saw me crying over my hurt dignity he asked what was wrong and I told him the fence had just beat me up.

He puffed out his chest and strutted over to the fence proclaiming "I'm not letting MY mom get hurt again! I'm going over the fence!" He proceeded to climb with a purpose and was up and over the fence without so much as a splinter to show for it.

He was in the back and out the front with keys in hand before my stomach and chest had even done welting up and bleeding and turning black and blue.

So, there could be one more side effect of Fingolimod that I hadn't considered.

The bottle should say "Caution: May cause feelings of grandeur and invincibility that could cause you to go temporarily insane and make a 47 year old do something that only 10 year olds should even attempt."


"Caution, always tuck in your shirt while taking this drug. May get hooked on fence and hang naked in front of traffic. Be sure to stay away from all fences before you know how you will react to this medication."


"Stop taking this medication and consult your physician immediately if you find yourself hanging by your shirt from your fence during rush hour with your boobs exposed for all to see. This could be a serious reaction and may need medical attention, especially if scrapes, swelling and bruising develop."

If I have anything to say about what the warning labels will be, that should about cover it.

by Michael of Perspective is Everything
Living with a disease like multiple sclerosis, or many others for that matter, can be very unpredictable. One day you feel strong, the next day you don’t. One day you are asymptomatic. The next day you have a new symptom that won’t go away. Diseases are just like life. Every event, every instance falls into one of three categories:
  • The things we control
  • The things we influence
  • The things over which we have no control
I choose to exercise as much influence and control over my disease as I possibly can. Let me explain what I mean by that………

A few months ago, my right hip started to give out. Typically, when this happened I fell down….and I don’t like falling down! I went to see the chiropractor to get an adjustment. I went to the orthopedist and got an x-ray and an MRI. I went to see my neurologist and my physical therapist, too. Since nothing showed up on the x-ray or MRI, the consensus was that the weakness was caused by a weakening of the hip muscles…..caused by MS.

So here is what I did about it: I started exercising my right side. I exercised it at least four days a week. In time, I started exercising my left side too. Now, I exercise five to six times a week. Do you know what happened? My hip got stronger and stopped giving out and I stopped falling down.

About two months later, I started having lower back pains. I saw the chiropractor and the acupuncturist and that helped for awhile. But then, a few weeks later, the pain was back with a vengeance. It was so bad that I could not stand up or walk. I could barely move. At home, I normally use a walker to get around, but for a few days, I used a wheelchair in the house. The chiropractor came to my home. So did the acupuncturist. I was able to move, but only a little. I saw my neurologist and my physical therapist. Again, the consensus was the same: the disease was progressing.

The physical therapist explained it best: my quadriceps (the muscles of the thighs) had become so weak that the way I walked was putting a great amount of stress on my lower back, which wasn’t that strong either. “THAT’S GREAT NEWS” I said. “That’s something I can do something about.”

So I did something about it. I added exercises to my workout to strengthen my ‘quads’, lower back and core. Guess what is happening? I am getting stronger. These new symptoms may be the best thing that has happened to me in these past few years because they have put me in control of how I manage this disease. I am getting stronger, more disciplined and more determined to not allow this disease to overtake me, at least not yet. In fact, the physical therapist calls the exercises we do today “pre-gait exercises.” Pre-gait means “before walking.” Am I going to improve my walking? You bet. Will I be able to walk without a walker? We will see. What I will do is the best that I can.

We may not always have the ability to do something about what is happening with our bodies and our diseases. We can be defeated or energized. We can do all we can to combat what is happening or we can do nothing at all. We can focus on all the abilities that we have lost or focus on all the abilities that we still have. One thing is for sure, we always have a choice in how we respond.

New symptom? Bring it on. Teach me how to respond to it, manage it, beat it and be stronger. It is not easy. But it is my disease, my condition and it is my job to do as much as I can about it for as long as I can……which I plan on doing for a very long time.

Participate. Make a difference. Live a life that matters.

This concludes the 20th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 9, 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 7, 2008.

Thank you.
Comments for this post.

Thursday, September 11, 2008

Carnival of MS Bloggers #19

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

"Please Be Gentle Here"

In a new MS blog - Chemo Is Not A Pony - Xenu discusses Ataxia, Chinese Hamsters, and Sesame Street Band-Aids including a profound look at Chronic Illness.
Today I woke up with major ataxia in my arms, hands, legs, and feet. This has happened around a half a dozen times over the course of the past year. Usually it lasts around 24 hours and then disappears. I think the longest it’s ever lasted was close to 48 hours.

I am clumsy, uncoordinated, dropping things, tripping, walking oddly.

It was also an injection day and, for some reason, the chinese hamsters hurt like hell going in. [See the original post for an explanation of “chinese hamsters.”]

I remember one time that Lisa, over at Brass and Ivory, commented that she doesn’t use a Band-Aid on her injection sites because it is unnecessary. I use a Band-Aid, but not for physical reasons. I am aware that the blood clots within seconds of withdrawing the needle, and that the wound is tiny anyway.

When I place a Band-Aid over my injection site, it is for purely psychological reasons. I buy boxes of colorful children’s Band-Aids—Dora the Explorer, Sesame Street, Hello Kitty, etc. Affixing one to the site is soothing; it says, This is over now. It labels the wounded area. It communicates to other people: Please be gentle here. This part hurts. I am vulnerable. It covers up with cartoons and superheroes the memory of a puncture and the evidence of ongoing internal damage in the form of an incurable disease. The Band-Aids are an attempt to “make better,” to heal, what cannot be made better and cannot be healed.

Lazy Julie, who really isn't lazy, creates fabulous MS Haikus and clever art.

Sleep evades me now.
Insomnia is my foe
MS gets so tired.

My upper arms ache.
Result of ex-stress no doubt.
My power. My choice.

Bad TV. Scrabble.
Escape routes for boring moms.
Only numbs the pain.

No meeting weekend.
Big surprise I feel like crap.
Serenity now!

Mind Sparkles. MS.
Lesions abound. Brain and spine.
Can't wish them away.

All meaning changes.
MS. It used to spell Ms.
I want that back now.

of Disabled Not Dead discusses family, sleep, and Restless Leg Syndrome.
I have had this for as long as I can remember...even as a young child. I "inherited" it from my mother and grandmother. Of course, I say that in jest because I have no idea if it is inherited or not.

When I was a child (from age 4 to 9), my Gran slept with me in my bed because she stayed overnight alot and there was no extra bed for her to sleep. I can remember her rubbing her legs into the wee hours of the morning as they danced and spasmed with a mind of their own. Many a morning I went to school as tired as I was when I went to bed because my Gran's RLS not only kept her awake, it interrupted my sleep too.

After my parents divorced, my mother rented my room out to a boarder, so I had to sleep with her. Rerun time! She had the same thing going on that my Gran did. I can remember my Gran complaining about her restless legs over breakfast in the morning and my mother telling her to stop complaining. Years later, my mother would complain and Gran would tell her to stop complaining!! LOL

My mother was an alcoholic as well (Gran didn't drink) and she tried "medicating" it with booze for most of her adult life. Didn't help much from what I could see. When I entered 8th grade, my mother took me to her doctor because between the two of us with restless legs in the bed, neither of us was getting much sleep. She didn't bother seeking help until "I started keeping her up at night." !!!!!!!!!!!!!

Doc ordered Valium for both of us, except she mixed it with the booze. He gave me a list of foods to avoid that might stir up the legs. I was already on a Celiac's disease diet from age 9 and most of the bad foods were already avoided. So in later years (before Requip) my RLS had to be quelled by my own investigations and research. I learned what stirred it up, activities to avoid or prepare for, and some ways to help with the constant jumping when I didn't get RLS med on time.
Please read the rest of Anne's post here. where she discusses how restless legs can be associated with multiple sclerosis.

Update on Fundraising for Herrad's Cushion.

Herrad is a fellow MS blogger who writes at Access Denied-Living with MS.

Here is an excerpt from an email she recently sent to Anne and myself.
Thank you all very much its a moving experience that you all support me like you do. Its given me a tremendous boost, as well as reminding me about the important things in life.
The wound nurse from the Rehabilitation Center Amsterdam and my doctor recommend that I stay in bed for another month. The nurse was here this morning and said one month from now.
Its a deep and nasty pressure sore which will take a long time to heal. And when it does heal I have to be very careful. Will not be able to sit as long as I have been, will have to have breaks in the day when I lie down.
Will get Richie to measure my wheelchair cushion so you know which size cushion I need, think its different to the 18 x 18 measurements of one of the cushions. By the way which measurements do you use in the U.S?
I have been advised by the nurse and the ergotherapist that I need the custom built cushion not the overlay which does not give enough protection. I am by the way totally immobilized and can only move my arms and can not sit on a plastic surface as that will allow me to slip which is bad for pressure sores.
Thanks again for all the support and for the friendship and the love that I have been lucky to receive from you and all the other MS bloggers in the US, you are all wonderful people and help me tremendously.
Take care of yourselves.

We have collected $335 of our $600 goal. Please consider donating and/or helping to spread the word. To donate to Herrad's Cushion click on the PayPal Button below. Together we can make this happen for a fellow MS Blogger in need.


This concludes the 19th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 25, 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, September 23, 2008.

Thank you.
Comments for this post.