Brass and Ivory: Life with MS & RA

Time Capsule 2012

noreply@blogger.com (Lisa Emrich) — Sun, 01 Apr 2012 16:38:00 +0000

What kind of silly things would you have put in a time capsule when you were 10 years old? Your favorite hair clip, a piece of music you performed, a baseball card if that was your kind of thing, maybe a picture, favorite cassette tape (remember those?) or a locket of hair.

Now think....what would you put in your time capsule this year? I might fill the time capsule not so much with items, but with stories. It is through stories which we can share the most intimate part of ourselves.

My story might be punctuated with little things like a horn mouthpiece, piles and piles of music, the top of my no-longer-used Autoject2, or a picture of my engagement ring. My story would definitely focus on music and health.

Maybe readers 100 years from now would have to conduct research just to uncover what exactly is multiple sclerosis. The thought that people couldn't receive the health care they needed because of a silly thing like money would be unheard of and not easily understood. But the heart of the blog would remain pure and unending.

Just as we continue to celebrate the everlasting time capsules which are the musical masterpieces of Bach, Beethoven, Chopin, Mozart, Strauss, Tschaikovsky, Mahler, Prokofiev, Ives, Debussy, Copland, and many, many others, we will honor those who have blazed the trail before us.

Perhaps someone opening my time capsule would know that deep down, things are the same. People are the same no matter their health or conditions. Beyond the hope of a cure, I would want someone to see me in the things I chose to share this year or in 100 years.

This post was roughly inspired by the 2012 WEGO Health Activists Writer's Month Challenge prompt of the day: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112.

Poetry and Quotes

noreply@blogger.com (Lisa Emrich) — Mon, 02 Apr 2012 17:46:00 +0000

Today's prompt for the Health Activist Writer's Month Challenge is - "Choose a quote that inspires you – positively or negatively – and gets you thinking." Rather than discuss a quote, I want to invite you to honor National Poetry Month with me.

On HealthCentral, we will celebrate the talents of our own RA community and create a place to share our thoughts, our words, our poems throughout the month of April. To get us started, I created a poem which features a side of rheumatoid arthritis.

light

by lisa emrich

rain beats down on the windowsill

heat rises from the concrete

early morning stretches

undo glitches in

my toes,

time stalls,

outside children play

in the sun rays and laugh while

dawn drips down their faces and smiles

a gasp

rings out while

tangles twist about

hands, knees click and clack,

ravished joints mostly seek solace

in the comfort of heat

teasing light

i love the

sun

Read this post in its entirety:

Celebrating RA Poetry and Community Creativity

The Master of Time and Matter

noreply@blogger.com (Lisa Emrich) — Wed, 04 Apr 2012 01:49:00 +0000

Who doesn't want superpowers? Today was a day that I could have used a superpower or two.

I posted the following status on Facebook earlier this afternoon:

"I've gone to yoga, filled up my car with $50 gas, picked up 21 pieces of clothing at the dry cleaners, stopped by the pharmacy, had lunch with my mom, put previously-mentioned clothing in the closet at home, and sat to read emails/posts for about an hour. Maybe it's time for a shower now since I'll be teaching in less than 2 hours. And, I must practice some of the 18 contest pieces I will accompany at solo festival in a few weeks. Whoever said Spring Break was for resting?"

I also managed to throw one load of laundry into washer (and later dryer) as I was teaching and practicing. I finally paused around 6:30pm this evening. Whew!

The first superpower to come in handy would be the ability to stop time. I'd love to stop the clock and be able to complete tasks, or take a big snooze, or simply take a brain time-out, without having the entire day pass by.

A second superpower which would come in handy would be the ability to "think" a task and have it be accomplished as easily and timely as possible. Imagine being able to come up with the concept for an article, "think" it through at lightening speed, and have it be fully referenced, clearly written, and published "just like that."

Or even better...have the house cleaned just by conceptualizing it. Now THAT would be a SUPERPOWER!

Today's post was inspired by #HAWMC Day 3 Challenge.

Sharing MS in the Community

noreply@blogger.com (Lisa Emrich) — Thu, 05 Apr 2012 01:46:00 +0000

Last year I talked about why I write about health. Here is an excerpt of what I said....

"I consider myself a patient advocate and somewhat of an educator. I wish to see the MS blogging community remain an active and vibrant force on the internet. I feel that it’s important to promote other people’s material and websites, so I continue to do so.

I write about my health which encourages others to do the same. Together we help to spread awareness and understanding of what it takes to live with illness. We provide a resource for those who are searching for answers to questions or validation of their own experiences. Together we are powerful."

I continue to believe that together we are powerful. Often I am inspired by others. Four of my fellow MS bloggers have contributed to a recent video project at the new MS Community Education Sharing Hub, sponsored by Novartis (makers of Gilenya) and produced by wegohealth. Their video is great! As soon as the Sharing Hub has been "shared" on Facebook or Twitter 100 times, the National MS Society will receive a $1000 donation from wegohealth.

I cried today.

noreply@blogger.com (Lisa Emrich) — Sat, 07 Apr 2012 22:18:00 +0000

In the past few days, I've accomplished much less than I desired. Not that I haven't been busy, because I have, but that there is so much more to be done.

Just as I mentioned in the recent "superpowers" post, I wish that I could simply conceptualize something and it would be accomplished, completed, created, finished, etc.

That's not the way things work. So today, when Rob and I were talking about what needed to happened (or that we wished would happen) before joining our households, I began crying.

Just a frown at first, then halted breathing, and finally full-blown tears. It was uncontrollable (kinda like my life feels right now).

I can't do everything by myself. I can't do it all alone.

At least I exploded in tears rather than in some other way.

So today, it was good, I cried.

Best laid plans, and not-so-good pipes, go awry

noreply@blogger.com (Lisa Emrich) — Wed, 11 Apr 2012 01:37:00 +0000

The door to my Music Studio is located halfway down a very long driveway.

My driveway isn't exactly driveable at the moment.

Under the asphalt, broken water pipes were hiding.

Even big pipes were no match to tree roots.

We now have a new PVC main water line between the house and the street.

But that's not all...

A bit of our front fence is missing

and the lilacs are sadly kissing the sidewalk.

This is where the backhoe entered the front yard to dig up the old pipes.

Unfortunately, that's not where the broken pipes were located.

Hopefully tomorrow my students will be able to safely enter the studio once again.

Carnival of MS Bloggers #112

noreply@blogger.com (Lisa Emrich) — Thu, 12 Apr 2012 20:30:00 +0000

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

Acceptance: Anger, Uncertainty, and Murphy's Law

Get Mad, Get Really Mad

by msrecess

“That’s so annoying.” Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.

As I was talking to her, something happened. Instead of trying to solve her issues or getting sad myself, I told her ”that’s so annoying, Mom.” And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck. Taking the MS out of the equation. I chimed in with her frustration and you could hear how frustrated I was for her in my voice. Strangely enough, I think it helped. In that moment I was on her side. I wasn’t saying you should do this, you should try this, Mom it could be worse. Instead I was on her side and I was mad at MS for her. I was mad at life for her.

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you. Show you that you’re not alone and your feelings are justified. As a self proclaimed ”problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs. Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them. Without knowing this you actually help them more by not trying to fix their problem than fixing it.

So today I got mad at MS. I got mad with Mom. We chimed in together about how this is so annoying. How much this sucks. How Mom just can’t win. It felt good.

Lesson learned: I think I will get mad at MS more often.

I Want to Scream

by msrecess

I feel overwhelmed. I feel frustrated. I feel upset. I feel mad. I feel hurt. I feel so many things that my initial reaction to them is to ignore them. I like to think I am pretty good at dealing with problems head on but this one won’t go away. There is also no end in sight. It’s a problem that I can’t discuss with many people nor do I want to discuss it with many people. My mom has MS and it sucks. It absolutely sucks. I can’t get a handle on it. I can’t. I am admitting it. I don’t even know where to begin to get a handle on it because it is constantly changing. There are new symptoms, new emotions, new issues to tackle, constantly new. They also aren’t my symptoms. They also aren’t symptoms I totally understand. They are new terms and phrases. MS also brings decisions that aren’t mine to make. They are Mom’s to make. I have no control over a situation that is infiltrating every ounce of my life. My lack of knowing what to do is driving me crazy. I literally sit as my head fills with thoughts and have no idea what to do. I just want to curl back into my shell and do nothing. I just want this to go away. I just want to scream.

I Feel the Earth...Move...

by CJ of my MonSter Stories

Today was one of "those" days - when it seems as though someone might be sticking a probe in random areas of my brain and saying "Watch what happens when I do this!" It was a very active day for what my neurologist calls "paresthesias", odd sensory disruptions that include tingling sensations and numbness, feelings of vibrations and/or electrical sensations in one or more body parts or my entire body, reduced sensation or heightened sensation.

At times, walking was difficult due to the intermittent numbness of the front part of my right foot combined with the sensation that I was stepping on golf balls. Because of tingling and incoordination, I couldn't get my thumb and fingers working well enough to pick up the dime and nickel to use for the parking meter. Talking on the telephone was a problem because I was getting a shrill sound coming and going in my left ear and then my hearing would be diminished for several minutes at a time.

Sometimes the vibrations were so noticeable that I watched to see if other folks would say anything because I was sure we must be having an earthquake! While sitting in a chair it felt as if the floor were vibrating beneath my feet and I could feel the sensation go through my body. I was certain that everyone else had to be experiencing it too.

While preparing for bed, I was standing in the bathroom brushing my teeth. Suddenly I felt the familiar rush of fatigue and weakness wash over me and it felt as if my entire body, to the core, had turned to Jell-O. I've learned that it can happen at anytime, regardless of my level of activity, and there is nothing I can do to prevent it, fight it, or stop it. I must lie down and do nothing...and so...I am.....

(Reposted by permission © Post by CJ Taylor. Photo from NASA)

Grocery Shopping with MS Meets Murphy’s Law

by Dave of Dave's ActiveMSers Blog

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space.

Thanks, Murph, sometimes you aren’t so bad after all.

This concludes the 111st edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on April 26, 2012. 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, April 24, 2012.

Thank you.

Comments for this post.

Taking Time For Yourself to Counter Stress and Anxiety

noreply@blogger.com (Lisa Emrich) — Sun, 15 Apr 2012 20:44:00 +0000

After writing about anxiety and life events of the past week (post excerpted below), I took a few days away from blogging to get some rest. For the next few weeks, I really need to focus on events in my physical life. Please excuse me if it gets a little quiet around here. Thanks.

*****
Life has been crazy lately. I seem to be two steps behind, no matter which direction I reach. As I result, I feel the stress and anxiety beginning to mount. In fact, it is already mounted and is at a full gallop. I’m being dragged behind the tallest imaginary Clydesdale horse I’ve ever seen. I’m trying to find my feet.

Since the beginning of this year, life has been moving at lightning speed. Some of it has been exhilarating, some of it has been duty-bound. All of it has zapped my energy reserve and I’d like for it to slow down just a bit. So many tasks accomplished, but still too many left undone with ends dangling loose.

Take writing a post, for example. I have started many started. I’ve begun research on great topics. I’ve read hours of material and saved countless pdf files on my computer for future reference. Yet, I’ve not been able to complete them to be shared here on HealthCentral.

Can I be straight with you? I am underwhelmed with my ability to keep things under control lately. I am seeing the monster called depression (usually stuck in the corner pouting because he can’t be set free) grow braver and venture out of its cage to cause mischief and mayhem. (Side note: the word mayhem makes me smile a bit. Reminds me of the car insurance commercials with the “mayhem” character. Love those.)

Read this post in its entirety:

Stress, Anxiety, Multiple Sclerosis, and Mayhem

Successful Solos

noreply@blogger.com (Lisa Emrich) — Sat, 21 Apr 2012 20:43:00 +0000

Beautiful blue bonnets to celebrate a clean sweep of straight I's (superior scores) for all of the students I accompanied today at Solo & Ensemble Festival.

I was especially proud of my own horn students who totally rocked!!

Hopefully next Saturday's performances will be equally successful.

Carnival of MS Bloggers #113

noreply@blogger.com (Lisa Emrich) — Fri, 27 Apr 2012 03:09:00 +0000

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

The Diagnosis Game, Power of "Om," and Coping with Challenges

Note: My apologies for delayed publishing of the Carnival. Life has been crazy with plumbing issues, solo festivals, and a personal battle with depression and anxiety.

Limbolanders: Deal or No Deal?

by Laura of Inside MyStory

Howie Mandel has invited you to a special edition of “Deal or No Deal,” where the lovely but scantily clad physicians assistants and nurses present you with the opportunity to walk away the big winner. But first you have to pick the right briefcase containing your prize. Slowly you will pick off the cases one-by-one….

Beginning with the first pick, the crowd applauds when the case is opened to reveal Lyme disease. It’s off the board now – the blood tests confirm you’ve not been bitten by a tick. Whew, that was easy.

The next case you pick wipes a big disease off the board – SLE , no, not the latest Cadillac model, but Systemic Lupus Erythematosus. The audience moans a bit but you tell them that’s ok because there is still lots of big stuff left on the board.

Next pick and the crowd goes wild when you knock STROKE off the board. Such a simple common medical problem, anyone can settle for stroke, and you are sure you are destined for something more.

You press on with the game, being tempted with offers to settle from The Doctor, who is substituting for The Banker, in this special Deal or No Deal episode. Your support team urges you to say no deal and keep pressing on.

The stakes are growing because you are down to just a few cases left … which one holds the ultimate prize? Which one sends you home with the most to show for your efforts?

Oh no! The next case you picked contains Central nervous system (CNS) Angitis, and your neurological deficits can no longer be blamed on CNS Angitis.

To sweeten the deal, The Doctor offers you the opportunity to walk away in exchange for Psychological Counseling for life, and not just group therapy- this is individual one-on-one time with the shrink. You think long and hard, because it is tempting. You know you have depression and you know Howie has also done extensive psychotherapy for his OCD and look at what a success he is…. But you are no Howie Mandel and decide that this really isn’t in your head. After a lengthy commercial break while you ponder the choice, in the end you turn down the offer and keep playing.

The moment of truth has come – two cases left. You know you still have Multiple Sclerosis on the board. The second case contains the most dreaded prize of all – come back in six months. Which one does your case hold? The crowd is hushed and you are so excited with anticipation you can barely keep your legs under you.

Background music begins to play while Howie faces the camera and announces the time is up and you’ll have to return for the next episode to find out how you finish Deal or No Deal.

The Diagnosis Slow Lane

by Olivia of Chronic

I am in the slow lane of the diagnosis process...
In some ways that seems good, surely that means things aren't too bad right?
I am thankful my cervical MRI showed no lesions!
I had a mental party after this news!
Next, my new neurologist has me set up for another
nerve conduction study and a lumbar puncture. (YIKES)
I am also seeing a urologist because I have had back to
back Urinary Tract Infections and a bladder that seriously has a mind of its own.
Next week the urologist will do some type of catheter test to show more of what is going on with my bladder. He seems to think it is a mis firing of my brain telling the bladder to empty and then it will not empty completely.
We will see.
I am sharing these details because when my symptoms first started I cruised the internet trying to find anyone who had a diagnosis story, I know we are all different but maybe my story will make this road a little easier for someone else.
In the meantime I just have to keep on keepin on.
That means, kids school drop off and pick up, laundry, cleaning house, dishes, dinner, and most importantly loving on my loved ones.
I am still dealing with overwhelming waves of fatigue, spasticity, mental delay, bladder frequency/urgency, numbness, tingling, burning nerve pain etc.
However, the show must go on...at a much slower pace mind you.
My house is not perfectly clean but it is decent and my family and friends are loved.
I continue to do yoga twice a day and meditate at least twice a day.
My whole family loves the meditation music....so there are some good things from all of this.

My prayer for today:
Focus on sending out loving energy,
even when my body is screaming it is too tired or it hurts too much.
Continue to learn how to love my new body.

Hugs and blessings to all!
xo
Olivia

Please Don’t Make Me Om

by msguidedjourney

The Yoga Paintings of Jan Hyde

I had always disliked yoga. I actually really loathed yoga. I just didn’t have the yoga personality. I had things to do, people to see, places to go and you mean to tell me I need to cover myself in a blanket and do Shavasana? If you have never practiced yoga, Google it. It’s the corpse pose. I guess I didn’t have an appreciation for lying still in a corpse-like posture while listening to meditation music and seagulls. And the mere thought of oming in a room full of people made me want to snicker because it just seemed so silly.

I first tried yoga in a class that was held above the garage of a woman my sister knew. It was a nice studio and Mary seemed like a nice person, but each week when my mom, sister and I went, I felt more and more stressed. I found that I just couldn’t stand the slow pace; the quieting of the mind. I did the 6 week session and declared that yoga just wasn’t my sport. I tried it one more time at the local Y and the instructor showed up wearing jeans to teach the class and she would actually fall asleep, complete with loud snoring, during Shavasana. The only time she seemed like a yoga “teacher” was the time that I sat silently while everyone else omed their three oms; one to the room, one to the earth and one to the universe. She would look at me and sternly say, “let’s try that one more time.” Please don’t make me om!

That was about 8 years ago and I had the idea in my head that yoga actually made me angry. When my MS specialist told me that yoga was a very good exercise for people with MS, I still avoided it for several months. On one of my last rides home from Pilates, I happened to drive by a studio that just caught my eye. It was an old mill building with a brook running beneath it. I went online, found the website and saw that the schedule was very flexible. There was no commitment to take a set amount of classes. My friend S had been trying to get me to revisit yoga and when I told her about this studio she tried a free class. She loved the place and assured me that there was no oming involved. I decided to give it a go. It was a large, but not too large, stylishly Zen studio, comfortably warm and dimly lit. I immediately felt comfortable there. The first class I tried was a Vinyasa Sundown Flow and it was very physical. I felt challenged in that it required a lot of upper body strength and the instructor moved rather quickly from one pose to the next, thus the flow aspect. It was nothing like any yoga class I had ever done and while maybe that class was too physical for a beginner, I bought a five class pass and started trying different classes twice a week.

One of my favorite classes is the beginner class on Monday mornings and I find it to be a fantastic way to begin the week. On sunny days, the large windows that wrap around three sides of the studio, provide yoga mat sized sunny patches that make me feel like a cat in the sunshine. The instructor is so warm and engaging, I would probably om while standing on my head if that is what she asked of me. While that was probably an exaggeration, I have been known to now om on occasion and it no longer feels wrong to me. Shavasana has become my favorite part of class. Last night I went to a gentle yoga with mediation class and the instructor went around the class during this quiet time, massaging each students head and using aromatherapy oil to give a blessing on our foreheads. It felt amazing to have my MS rattled head pampered in such a way. I have also participated in a work shop that was 3 hours of restorative poses, which essentially was an afternoon of creative Shavasana and was simply amazing.

I have caught yoga fever and I’m not looking for a cure. Whether or not you have a specific health issue, yoga seems to be an all around whole body fitness routine that not only engages your physicality, but also your mind. As anyone with MS has experienced, closing your eyes while standing straight with arms at your side results in an automatic swaying of the body, but yoga has improved this for me personally as it is excellent for challenging your balance. I highly recommend it and suggest that you don’t give up before trying it at several studios to find your comfort zone. May the pure light of your spirit shine and guide you through each day… Namaste.

To spend three coins

by Dan Digman

All I remember is standing on the basketball court one evening at the elementary school I attended across the street from my home. I was taking a break from shooting baskets, and I caught myself staring at our family’s one-story light green house.

It was the last place I wanted to go.

I don’t recall exactly how old I was, but I was old enough to know the realities of a life lost after earlier in the day I had seen my dad cry for the first time. My mom wept with him and, seeing them both so sad, my brother, sister and I cried too.

Dad had received the call that his brother Jerry – my Uncle Doc – passed away at his home in Dyersville, the town where my dad and his 13 siblings had grown up.

It was going to be a sad night, a sad day tomorrow, and another sad day at the funeral when I knew I was going to see all of my beloved aunts and uncles cry as well. I had never see any of them cry before either.

All I wanted was a free pass.

I just wanted to make this all go away and get our lives back to the place where everything was familiar, comfortable and manageable again. I longed for something to fast-forward me past the sadness of my Uncle Doc’s death to the time where all this dust was settled and life was back to normal.

I realized one day it would be better – time heals all wounds – but I was afraid, and I just didn’t know how I was going to be strong enough to get through this.

And so, in my creative elementary school-aged mind, I developed a revolutionary thought:

What if when we were born, God gave us three coins – free passes, if you will – that we could use at any time in our lives. Three opportunities to fast-forward through a difficult time and pick life back up once everything returned to “normal.” We’d have the memories of the experiences we skipped over, but we’d be able to bypass and avoid the pain, fear, sadness and anxiousness that accompanies such overwhelming situations.

Three coins. But when they’re gone, they’re gone. This meant that you really would have to think long and hard, using them only when you were facing what you felt were truly going to be the most overwhelming circumstances you’d ever face.

With this revolutionary thought, I picked up my basketball and went home to face the realities I was avoiding. I realized that even if I did have three coins, I wouldn’t need to use one at this time in my life. I would be strong. This too would pass.

Through a series of sad days, seeing my uncle laid to rest and seeing my dad and his siblings cry together, each new day thereafter was less painful than its yesterday. Soon the dust settled and life was back to normal. I made it through, even without one of my three coins.

I realize such an outlook was developed by my elementary school self, but I’ve carried the three coins thought with me every day since.

I look back on all the times in my life where I wished these three coins were real. Times when I was afraid, and I just didn’t know how I was going to be strong enough to get through them, such as coping with the deaths of my grandmothers, getting diagnosed with Multiple Sclerosis and living through a previously failed marriage.

Through each of these moments, I had convinced myself that if I had a free pass I would have cashed it in and fast-forwarded through the difficult time. If this indeed were the case, I would have found myself today at 39 years old and without any of my three coins.

The reality is, it would have been wasteful to have cashed in my coins on any of these moments. I stand here today living a life where everything is familiar, comfortable and manageable, even after living through the pain, fear, sadness and anxiousness of events like the death of loved ones, an MS diagnosis and a divorce. And I didn’t need any coins to do it.

At the end of each day, I find comfort in knowing that with or without the three coins, I will receive the strength through my God, family and friends to make it through the challenges and difficulties in life.

Perhaps these are the three coins I was given when I was born – God, family and friends – and these collectively will be available to me in unlimited supplies to help me move forward through the most overwhelming circumstances I’ll ever face.

I often find ways here to incorporate a Springsteen lyric that inspires me in times of need, but here with my three coins, I turn to a scripture reading – Matthew 7:7 – that my Grandma Otten had hanging on a plaque in her kitchen that showed a picture of Jesus knocking on a door:

“Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you.”

Whatever your faith or beliefs, I wish you the best in discovering the three coins that will help you along your journeys through life.

This concludes the 113th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on May 10, 2012. 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, May 8, 2012.

Thank you.

Comments for this post.

Your Contribution to RA Research

noreply@blogger.com (Lisa Emrich) — Sun, 29 Apr 2012 15:41:00 +0000

Think you can’t donate your tissue since you have rheumatoid arthritis? Think again. Researchers want your tissue and blood samples in order to conduct a variety of research projects.

The Robert S. Boas Center for Genomics & Human Genetics, as part of the Feinstein Institute for Medical Research in New York, is examining patterns in the human genome to find specific genetic risks for diseases such as rheumatoid arthritis or lupus to Alzheimer’s disease and schizophrenia.

Here is where the average RA patient can participate. If you are scheduled to undergo orthopedic surgery, you can choose to contribute to the Tissue Donation Program - Synovial Tissue Collection study led by Dr. Gulko. The purpose of the study is two-fold: 1) to collect synovial tissue and blood to study the genetic and environmental factors involved in the development and severity of arthritis, and 2) to save or “bank” unused portions of the synovial tissue and blood for future studies. Currently, the Feinstein Institute is conducting at least seven clinical studies related to rheumatoid arthritis.

Synovial tissue often obtained during orthopedic surgery or through a needle biopsy has been a source of research material for decades. Often tissue samples are taken from the knee joint, but which method provides better samples? Researchers found that most microscopic features of inflammation were similar regardless of collection method. (Bresnihan et al. Synovial biopsy in arthritis research: five years of concerted European collaboration (pdf). Ann Rheum Dis 2000;59:506-510.)

Read this post in its entirety:

Donated Tissue Samples, Essential for RA Research

Anxiety vs. Depression as Experienced by Arthritis Patients

noreply@blogger.com (Lisa Emrich) — Wed, 02 May 2012 00:13:00 +0000

A new study published in Arthritis Care & Research suggests that one third of US adults living with doctor-diagnosed arthritis (including rheumatoid arthritis, gout, lupus, fibromyalgia, or some other form of arthritis) aged 45 or older report having anxiety, depression, or both. The study comprised a phone survey of 1,793 individuals living with arthritis from the Arthritis Condition and Health Effects Survey (ACHES) which is the most comprehensive population-based national survey of US adults with arthritis to date.

Eighteen percent of respondents reported having depression, a common comorbidity in patients living with chronic illnesses including rheumatoid arthritis (Murphy, 2012). In previous studies involving RA patients, nearly 20% of patients experienced depression (Söderlin, 2000). Whether we’re talking about arthritis, rheumatoid arthritis or rheumatic diseases, it seems that rates of depression have remained similar over time.

In the current study, almost twice as many people living with arthritis experienced anxiety (30.5%) as compared to depression (17.5%). Eighty-four percent of respondents with depression also reported anxiety. Thus a significant portion of patients (14.7%) living with arthritis experience both depression and anxiety.

Have you ever experienced depression or anxiety, or both, and do you live with a rheumatic disease?
Read this post in its entirety:

Anxiety is More Common in Arthritis Patients Than Depression

Be Straight With Your Doctor

noreply@blogger.com (Lisa Emrich) — Thu, 03 May 2012 17:59:00 +0000

An excerpt from a recent post at HealthCentral:

Earlier this month, I wrote about the stress and anxiety I have been experiencing lately. It's hard to believe that it was almost three weeks ago I wrote that post. I blinked and here we are at the end of April.

Before my appointment with the nurse practitioner at the neurology clinic, I filled out the symptom checklist (found on page 3 of the returning MS patient forms). The checklist is very helpful. Along the left side of the page are symptoms such as loss of vision, vertigo, weakness (arms/hands - left/right), trouble walking/falling, memory loss/cognitive problems, bowel problems, etc. For each symptom, you are asked to indicate on a scale of 0 to 5 the severity of each symptom (0=absent, 1=mild, 3=moderate, 5=severe).

For the symptom “depression/anxiety,” I went for the maximum and indicated a “5.” When my nurse came into the room and quickly glanced at the checklist, she was able to zero in on my current, most disabling symptom. No beating around the bush. We got down to business and talked about the state of my mental health.
Read this post in its entirety:

Anxiety and Multiple Sclerosis: Seek Help!

Welcome MS Bloggers!

noreply@blogger.com (Lisa Emrich) — Sat, 05 May 2012 18:03:00 +0000

An Empowered Spirit - Cathy

Weird Neuro Shit

Taming the Walrus -

Tracy's World

I have MS....what now? - Jodi

pottymouth - Renae

Pile of Information - Jeff

I suppose these things happen - Heidi

The Life of a Greek Wife - Ashley

Nahleen

Life Can Be Simple - Lisa

Diagnosis MS

The directory of the MS blogging community can now be found on this page.

Arthritis Awareness Month: Show Us Your Hands!

noreply@blogger.com (Lisa Emrich) — Mon, 07 May 2012 18:38:00 +0000

May is National Arthritis Awareness Month. I missed sharing the announcement on May 1 regarding the release of the 1,000 Hands Poster Project (see below), but it's never too late. Show Us Your Hands! is an awesome project spearheaded by my friends RA Guy and Lene Andersen.

I ordered my poster last week.

Even better is the announcement that Show Us Your Hands! has released a new photo book Our Hands Can! - "the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness of this group of autoimmune diseases. This photo book contains the inspiring photographs and moving stories of dozens of people of all ages from around the world who live with different types of inflammatory arthritis and is being released today in celebration of Arthritis Awareness Month."

Oh how I wish I knew that Lene was doing this. I would have made sure that my hands contributed in some way. However, a photo of my hand was part of the original collage collected last December 2011.

Some inspiring people are doing great things to raise awareness of RA and other inflammatory arthritis diseases. Very cool.

(May 1, 2012) – Show Us Your Hands! is pleased to announce the release of its 1,000 Hands Poster Project, the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness of this group of autoimmune diseases. This poster proudly displays the first one thousand hands which were submitted to the community collage project and is being released today in celebration of Arthritis Awareness Month.

May is National Arthritis Awareness Month in the United States. Its goal is to bring attention to the issues and realities faced by people who live with one of the more than 100 different types of arthritis. More than 46 million people live with arthritis in the US, including 300,000 children. It is the most common cause of disability.

The 1,000 Hands Poster is available for purchase at Zazzle. “This poster is powerful! It represents how individual we each are with inflammatory disease while also showing how strong we are together as a community,” says founding director Cathy Kramer. All funds raised from the sale of these posters go to Show Us Your Hands! An international awareness movement which serves to unite and inspire the inflammatory arthritis community.

The Show Us Your Hands! inflammatory arthritis community collage project debuted in December 2011. People of all ages from around the world are represented in this community project and new photos continue to be added to on a regular basis. The community collage project serves not only as a symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands. By April 2011, the Show Us Your Hands! inflammatory arthritis community collage project had grown to include more than 1,000 hands.

Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease, and Systemic Lupus Erythematosus.

Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.org. Show Us Your Hands! can also be found on Facebook and Twitter

(May 7, 2012) – Show Us Your Hands! is pleased to announce the release of its Our Hands Can! photo book, the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness of this group of autoimmune diseases. This photo book contains the inspiring photographs and moving stories of dozens of people of all ages from around the world who live with different types of inflammatory arthritis and is being released today in celebration of Arthritis Awareness Month.

May is National Arthritis Awareness Month in the United States. Its goal is to bring attention to the issues and realities faced by people who live with one of the more than 100 different types of arthritis. More than 46 million people live with arthritis in the US, including 300,000 children. It is the most common cause of disability.

The Our Hands Can! photo book is available for purchase at Blurb in both hardcover format and softcover format. “Being part of this has made me feel proud of who I am with rheumatoid arthritis and all for the first time in a long time,” says Samantha Legere, who is profiled in the photo book. Founding director Lene Andersen adds, “Our Hands Can! is a tangible affirmation that all of us who live with inflammatory arthritis find a way to live meaningful, productive and joyful lives. Our hands may hurt and bear the visible signs of our disease, but it doesn’t stop us!” All funds raised from the sale of these photo books go to Show Us Your Hands!, an international awareness movement which serves to unite and inspire the inflammatory arthritis community.

The Show Us Your Hands! inflammatory arthritis community collage project debuted in December 2011. People of all ages from around the world are represented in this community project and new photos continue to be added to on a regular basis. The community collage project serves not only as a symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands. By April 2011, the Show Us Your Hands! inflammatory arthritis community collage project had grown to include more than 1,000 hands.
Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis, a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease and Systemic Lupus Erythematosus.

Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.org. Show Us Your Hands! can also be found on Facebook and Twitter.

Our Hands Can! by Show Us Your Hands!

Hormones and Multiple Sclerosis

noreply@blogger.com (Lisa Emrich) — Wed, 09 May 2012 13:17:00 +0000

Pregnancy, menstrual cycles, menopause and MS are the subjects of the following excerpted post:

Are you peri-menopausal or post-menopausal? Has menopause seemed to effect your MS? The question as to what extent menopause effects MS is one which has not been thoroughly studied. Women may talk about MS symptoms getting worse during menopause (Smith, 1992), but does menopause effect the clinical course of the disease?

According to recent research, presented as an abstract at the American Academy of Neurology annual meeting (2012) in New Orleans, menopause does not appear to change the clinical course of multiple sclerosis as measured by brain MRI scans and Expanded Disability Status Scale (EDSS) (Bove, 2012). Data is derived from a study involving 128 pre-menopausal women living with MS (ages 38 to 46) and 78 menopausal women (ages 54 to 62) as reported in MedPageToday.

The two year change in EDSS among pre-menopausal woman was 0.139 points while the change was 0.122 points in menopausal women. Not a significant difference. Changes in MRI scans were similar for both groups of women. Comparison to men living with MS from the same age groups was used in the study to eliminate the influence age might have on disease course in the analysis.
Read this post in its entirety:

Menopause and Multiple Sclerosis: Feel Worse? Your MS May Not Actually Get Worse, A New Study Finds

Carnival of MS Bloggers #114

noreply@blogger.com (Lisa Emrich) — Thu, 10 May 2012 16:22:00 +0000

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

Powerful Food, Pseudoexacerbations, and B/B Dysfunction

Unmentionable Bits

by Webster of halt stop forget relax

I imagine that many of you with MS deal with the dreaded B&B issue; not the second B - Bladder - which gets lots of attention. We either pee too often, or not enough, or get UTIs all the time, or wet our bed, or our pads, or ourselves. But the first B - Bowel - is the one that rarely gets talked about, and when it does get talked (or written about in neat little pamphlets explaining the various symptoms of MS that may affect us) it leans toward one end of the spectrum -- constipation. Oh, the dreaded bloating and feeling that you have to take a dump, but you just can't.

It doesn't tell you that constipation can be so bad that you need to see a gastroenterologist to find ways to manage it. Like taking doses of various meds, laxatives, eat more fiber, or even using your fingers to pry the stool from you. Oh happy, oh joy. Of course, you know you might be able to go if you just drank enough water to wash things out, but when you do that you can't control the other B [Bladder] (see paragraph one.)

It also doesn't tell you about the other problem: incontinence. Yes, that kind of incontinence. Going without warning wherever you might be. I have known someone to whom that happened - in a high end department store, no less. The sales clerks were very kind to her and led her to a private bathroom so she could clean up, and brought her a change of clothes. Yes, they were very kind indeed. She never set foot in that store again.

They don't mention that in those pamphlets. N'uh uh. And another woman told me that she was in a mall when it happened to her; suddenly it started running down her leg. She said she never wanted to be a runner, but she did that day. She was mortified, and lucky too, in a way, because though she left a trail of sorts, it just led to an empty parking spot. She retained her anonymity, at least.

What if the problem you have is that you can't feel when you have to go until, well, until it's actually TIME TO GO? And what if that happens when you're in the middle of a dream that starts telling you to get to a bathroom ... any bathroom ... like right now? And you wake up in a stupor, and you can barely move your legs because the blankets were a little too warm and you try to stand up, and you can't? You try and you try and you keep falling back onto the bed, and you start going and you know you can't control it? What do you do? This is no nightmare; well, yes it is, it is a nightmare, and this nightmare is part of MS. This is what happened to me the night before last.

So I look around to see what I have nearby that might save the situation. I find one of those thin blue plastic absorbent lined pads that they use at every urologist appt. [Don't mock me- I think it's foolish to let all that Dr. office stuff go to waste - so I bring it home; you never know when it might come in handy] This seemed like the perfect thing to use it for - to catch my ~~poop~~ unmentionable bits so they didn't get all over my sheets. I turned to lay on my side and managed to get it beneath and behind me. My sheets were saved; I just lost my dignity as I had to call my husband to help at that point. I had no TP. I couldn't clean myself. I still couldn't stand. I was exhausted. I just wanted to cry but couldn't thanks to my antidepressant.

I needed more sleep, so after DH cleaned things up (he's so good, he takes these things in stride), I took a long nap, after which I was able to (barely) stand, at least enough to use a walker to go to the bathroom, take a shower and get dressed.

MS just keeps getting better and better. I know; you don't have to say it, I was happy to share.

[Here is more information regarding bowel dysfunction.]

Kale, the New Frontier

by Yvonne Sousa

Kale is the new black

I cannot put it off any longer. For almost forty years I have been shirking my vegetable consuming responsibilities and now it is time to face them. Don’t get me wrong, I would try to lean towards healthy eating often enough. If I decided to treat myself with a bit of fudge I always went for the pumpkin or cranberry variety to get some of my fruit requirement in.

When picking out ice cream flavor I would choose a vanilla base- vanilla being a type of bean. If went out to eat and was asked which side I would like with my entrée I would pick the French fries to get potatoes (a veggie after all) in with the meal. And, of course, I never held the lettuce, onion, or tomato on my burger. The pickles I would toss aside, you can only go so far on the health kick.

But for some reason all of the hard work above was not enough. Apparently I needed to take a more thorough and active stance on eating vegetables in their natural form. I have been told that they are a necessary part of the diet and eating more of them will help my health and my BMI. But as someone who has taken great pains to avoid them whenever possible, where to begin?

I like the idea of corn- well cornfields anyway. They present such a nice image of middle-America and kids with overalls and ribbons frolicking in the fields. But a super healthy cousin who has a small farm in her backyard (too weird, even for my family, a farm in Massachusetts,) informed me that corn is now the root of all evil.

Seems, she insists, that we Americans eat too much corn and give too much of it to our livestock and that is why we are falling apart. I guess that is good news. It is only the idea of corn that I like, the actual stuff is icky.

Ok, I can handle a salad. I will go with that. But no, it turns out iceberg lettuce is really just a big clump of green water. It is not that healthy, the experts are starting to say.

I was about to give up when a friend directed me to Dr. Terry Wahls website that shows a super good-for-you eating plan, designed especially for people with multiple sclerosis. At first, it was terrifying. Dr. Wahls wants you to eat nine cups of green leafy vegetables a day! That just seemed insane and totally overwhelming.

But I was committed so I continued exploring. One of the veggies she recommends is spinach. Well, I can kind of deal with that. Especially if I use the bagged, dry spinach and load it with dressing in order to pretend it is salad. That might work for me. The wet stuff Popeye used to chug is out of the question but maybe I could accept the dry stuff.

Then Dr. Wahls said something wonderful, something I could totally work with. It turns out that kale is a green leafy full of all kinds of nutrients and good stuff! Wow, I thought only Portuguese people knew about kale.

And I had no idea it was a vegetable! Is Dr. Wahls sure about this? I always thought kale was just a soup additive that you got from your grandmother’s house or your cousin’s yard (oh yeah, a farm, now I get it).

This whole time it seems we Portuguese folks were already on the health track! I did some more research and it turns out that kale is the new black, meaning, it is the new super food. And since it is super good for ms’ers, it is the new orange as well. Yay!

It shouldn’t surprise me that my Portuguese friends and family were leading the way in this regard. Didn’t our Brazilian cousins discover last year’s new super food- the Acai berry? Who knows what we will discover next? Maybe the delicious Portuguese pastry trutas are the next super food? Why not? Trutas are filled with sweet potato so there you go! We Portuguese folks have now discovered three new super foods.

What about codfish cakes? The poor cod is one ugly fish but he is a fish and so maybe filled with good proteins and stuff. Hey, I bet he eats kale too so if you eat codfish cakes you might be getting protein AND a vegetable.

And then there is the wine. I don’t care what the French or the Napa Valley people say, the best wine comes from Portugal. And, research shows that red wine is really good for you. The experts suggest drinking it in moderation but I know a lot of other experts that drink it all day and they seem pretty healthy. They are pretty vocal and animated at least.

I guess my dad knew what he was doing when we visited his homeland when I was twelve and he wouldn’t let me drink American soda. “You are in Portugal and will drink wine like all the other Portuguese kids!” I thought he was being weird. Turns out, he was just worried about my health.

Encouraged and energized, I set out to start my new healthy eating plan and the world fell into place! A nice, hot bowl of kale soup filled with all things good. Vegetables- kale-who knew, potatoes, and a tiny bit of carrots to give the soup some extra color (carrots are no longer one of the best veggies and I don’t want to muck up the soup up too badly), beans-this soup just gets healthier and healthier, linguica- protein, thank you, and salt pork.

I don’t know too much about salt pork- is it a vegetable too? Even if it is not it just adds a bit flavor so how bad can it be? Red wine, some Portuguese bread- hello-grains, butter- dairy of course, codfish cakes as a side- all kinds of health benefit there, and trutas for dessert. Repeat this meal nine times a day. I love Dr. Wahl. This is going to be a cinch!

It's Just Bacteria

by Sarah O

Don’t you sometimes have that feeling that you know exactly what your body is going through, what the problem is and where the problem is. Sometimes you really don’t have a clue. But sometimes you just know.

Another one of those weeks when you’re going through so much you don’t know what to control or where to start. Can’t say what triggered it. I do vaguely recall saying that my throat was hurting. Then it wasn’t. Was going back and forth between the hospital to see an unwell relative. Also took some probiotics to cure a stomach bug. Had a few bad nights of worsening chills. The days were marked with a constant supply of acetaminophen to keep functional. Realized I had low grade fever throughout the day and all the ugly things that come with it. Body aches, dehydration, burning eyes. Sneakily getting worse, my bones started to ache, my limbs became weaker and weaker. “I have an infection.” I can't explain but it felt like something running rampant in my body. Until one day I was sitting at work crying, my bones hurt so bad I felt they would break, I couldn’t put pressure on my legs or carry anything with my arms. All my other pains crept up with a vengeance. It was like a symphony, each one trying to out-do the other and make itself heard and noticed. The pins and needles, the stabbing, the aching, the crawling, and the shooting.

I did get a bit scared. It could be the Fibromyalgia, the Multiple Sclerosis, or the Osteopenia.

Of course I went to a few doctors, but we started an antibiotic course on our own. The white blood cell count was high. Within a few days I was getting back to normal. I slept like a baby and my pains were gone. I have had many, many bad infections in the past, but never such a bad experience of tiding through it. Okay, so I’ve had some pretty bad infections in my life. They’re really not so hard to wait through. But this time, it was crippling.

Two things: A quick look around the internet shows how MS patients are at an increased risk from infections. The immune system is already compromised and any minor infection can cause serious flare-ups of existing symptoms, sending you hurtling over the edge.

Also, if you look it up, it is suggested that you see your GP if you have Multiple Sclerosis or a weak immune system and develop any Respiratory Tract Infection (RTI). A simple course of antibiotics may pep you right back up. If you want, you may look up detailed studies on the subject; http://www.ncbi.nlm.nih.gov/pubmed/8534384.

As for me, I’ve never been so petrified of coughing, sneezing germ bags in my life. Also, I've started carrying a hand sanitizer, and graciously offer it to as many as will use it !!

[Lisa's note: Here is more information regarding infection and pseudoexacerbations. When living with MS, developing an infection can cause symptoms to temporarily worsen. It can be quite unpleasant, but it doesn't affect the course of your disease.]

This concludes the 114th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on May 24, 2012. 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, May 22, 2012.

Thank you.

Comments for this post.

FDA vs. CCSVI: The Safety Alert Has Good Advice

noreply@blogger.com (Lisa Emrich) — Fri, 11 May 2012 14:48:00 +0000

How do you get the world to take notice of a controversial theory and treatment regarding MS and narrowed veins? You get the FDA to issue a safety warning.

Only if you were completely separated from the online MS community yesterday did you miss the alert coming from the FDA regarding Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the "liberation procedure" used to open narrowed veins.

CCSVI has been discussed widely throughout the MS community since mid-2009 (yes, even before the Canadian news picked it up in October or November that year). There has been a huge firestorm of patient advocacy which has pushed for treatment...and research...for CCSVI.

True that there are three documented cases of patients who have died following CCSVI treatment, two involving stent migration following early treatment/experiments in California. Last April, a Canadian woman died five days following treatment in Costa Mesa.

The FDA announcement does not reference any NEW cases of death, but that will not matter to our friends, family, and coworkers who are going to be asking us (or warning us) about the controversial theory/treatment.

The bottom line of the FDA announcement includes:

a recognition that more CCSVI research is needed,
patients should thoroughly evaluate the risks before undertaking any new treatment,
doctors should be aware of CCSVI and the balloon angioplasty treatment, and that
patients and doctors should stay in close communication regarding any treatment decisions.

These are all good words of advice for any health-related decisions we make.

Read this post in its entirety:

FDA Issues Safety Warning on Controversial CCSVI Treatment

More Brass and Ivory posts discussing CCSVI

Arthritis Awareness Month: Tools in the Kitchen CONTEST!!

noreply@blogger.com (Lisa Emrich) — Tue, 15 May 2012 17:16:00 +0000

In honor of Arthritis Awareness Month, we are having a giveaway contest here on Brass and Ivory. Two winners will each receive a set of six selected kitchen tools from the Stress Less line made by Trudeau.

Here are the contest rules:

Using the letters from the word RHEUMATOID, create as many English words as you can. Each word must have at least 6 letters and each letter in the word RHEUMATOID may only be used once.
The persons who come up with the most 6+ letter words will win the giveaway.
In the case of a 3-way tie, words duplicated on each list will be eliminated and the persons who then have the most unique words will win.
Please leave your list of words in a comment below this post. I have turned on comment moderation so that no responses can be seen until after the contest is over.
All responses must be in by May 31, 2012 at midnight Eastern Daytime Time.
The winners will need to provide a mailing address and phone number so that the sponsor can mail you the prize. Shipping is complimentary. (You may send your contact information to me privately. I will share it only with the contest sponsor and no one else.)
You do not need to have arthritis to participate. You do not need to purchase anything to participate. You must be at least 18 to participate.

Disclosure: I received a set of the same six kitchen tools to test and keep at no cost to me. The following is a description of the new line of kitchen gadgets and a brief description of my experience using them so far. More detailed product information can be obtained on the Trudeau website where videos of the products in action are available as well.

"Trudeau is proud to introduce its exclusive new Stress Less line of kitchen tools designed to reduce the strain on hands and joints. Ideal for those with arthritis or limited hand dexterity, these products are great for anyone looking to make everyday kitchen tasks easier than ever. Each item comes with a lifetime warranty."

Stress Less Easy Grind Pepper Mill (valued at $34.99)

I really enjoy freshly ground pepper. This pepper mill is BIG at 7.48 inches tall and comes full of peppercorns. When I first tried the grinder, I could hardly turn the handle it was so tightly adjusted. Pepper ended up on the counter top. Loosening the adjustment knob helped a great deal while also producing a coarser grind (which I like).

Stress Less Easy Grind Salt Mill (valued at $34.99)

The salt mill is basically the same grinder as the pepper mill, however the handle can be turned in either direction to obtain more finely or coarsely ground sea salt. Again play with the adjustments to find your desired balance. When I first tested the salt mill, I couldn't even see that salt was coming out of it, the salt was so fine.

Both mills are made of light weight material, however the pepper and salt stored inside make them feel a tad bit heavy. The wide-swinging arm on each grinder means that your elbow rotates rather than your wrist which may be helpful for some users and more difficult for others. It depends upon your personal situation.

These grinders are too large for the spice rack next to my stove. We'll see how long they get to stay on the not-so-large counter top next to my stove.

Stress Less Cheese Grater (valued at $19.99)

Can I confess than I've only enjoyed freshly grated parmesan cheese in a restaurant? I haven't even owned a cheese grater in probably 20 years and I learned that hunks of parmesan cheese are expensive.

I had to experiment cutting a piece of cheese to find that right size/shape which would fit under the flap of the grinder. I also learned that the grated cheese comes out better if you put pressure on the flap while rotating the arm. Unfortunately, my hands are not quite large enough to do this comfortably. There may be a trick to it which I didn't figure out. But freshly ground parmesan cheese does certainly taste good. I will definitely have fun repeat testing this item.

[Note: I finally decided to watch the product video and saw that the demonstrator held the cheese grater in a different manner than I had. I'll have to try that next time and see if it doesn't make using the grater more comfortable and easier.]

Stress Less Garlic Press (valued at $19.99)

Garlic is a must-have ingredient for dishes such as my favorite chicken noodle soup. Rather than using a garlic press I purchased in college, I have been using a Ulu knife and bowl to chop and dice garlic cloves.

In contrast to the other items in this set, the garlic press feels very substantial in your hand as it's made of metal rather than light-weight plastic. Very sturdy feeling especially as compared to my floppy plastic garlic press from college. However the holes are much smaller on Trudeau's press which may or may not be preferable for some people.

This was one item which was quickly cleaned up and placed in the kitchen drawer to replace my older garlic press which will find its way into a donation box or garage sale.

Stress Less Safety Can Opener (valued at $19.99)

I grew up in a house with an electric can opener and use one now. It was only in college and during power outages that I have had to use a manual can opener, the kind which requires lots of twisting motion in the wrist. Wow, manual can openers have come a LONG way. I had no idea.

I had to think logically a bit to figure out how to attach this opener to the top of a can, but once I did it was simple. I used a can of peaches for testing. Like the description says, there were no sharp edges created and the little pliers on the side of the device made lifting the cut lid easy. I even replaced the "lid" back on the can and put the peaches in the fridge and plan to eat more today or tomorrow.

Stress Less Pizza Cutter (valued at $12.99)

This pizza cutter is HUGE. I haven't used it yet but it looks to be rather effective although intimidating. To be honest I haven't taken the packaging off because I didn't want to expose a sharp blade just yet. I'll have to figure out how/where I might want to store this item before getting it out to use. If I had a drawer in the kitchen devoted only to larger kitchen utensils and/or knives, it would be an easy decision. But instead I have a really big pitcher/bowl on my counter in which these types of items are stored. There is a very positive review of this pizza cutter on Amazon if you are curious enough to read it. (I'll let you look it up though.)

I debated for over a month about whether or not to host a product giveaway. But then I decided that being able to share the opportunity with readers was nice all around, especially for those who may have limited strength and dexterity in their hands.

Please leave your contest submissions below. Happy word-creating!!

Getting Caught Up...

noreply@blogger.com (Lisa Emrich) — Wed, 16 May 2012 20:15:00 +0000

and then I look to see what task needs to be tackled next. Unless you want to find 20+ free, downloadable, published, peer-reviewed clinical studies in pdf form, I suggest that you do not google rheumatoid arthritis and physical activity. LOL.

Student performances are complete for this spring season. Young musicians did a great job on the Annual Mother's Day Recital. Family and friends made up a wonderful audience. As the kids get older each year, I notice that they eat less and less cake. Reminder to self - must purchase smaller cake next year!!

I'm so glad that MS and RA have not prevented me from being able to continue teaching and inspiring students. Amazing to realize that I've known many of these young adults since they were in kindergarten (or even younger). Should I feel old? Nah.

Online Rheumatoid Arthritis Influencers

noreply@blogger.com (Lisa Emrich) — Thu, 17 May 2012 11:00:00 +0000

SharecareNow names Top Ten influencers in the online RA community. My friends Kelly Young and RA Guy head the list.

Kelly Young - RA Warrior
Rheumatoid Arthritis Guy
Carol Eustice - About.com Arthritis
Ashley Boynes-Shuck - Arthritis Foundation
Dana - At the Water's Edge
Dr. William Shiel - MedicineNet.com
Dr. Scott Zashin - WebMD RA Community
Nancy Walsh - MedPageToday
kvnj - MDJunction RA Support Group
Lisa Emrich - Brass and Ivory: Life with MS & RA

Hey, did you catch No. 10?

I'm honored to be included in this list of people who definitely influence, inform, and inspire on a regular basis. A downloadable infographic featuring RA facts and the SharecareNow Top Ten is available.

From the press release:
"To be included in the SharecareNow 10 - Rheumatoid Arthritis list, influencers must have demonstrated a consistent impact on rheumatoid arthritis-specific conversations online over the past year. An individual's influence is measured and quantified through a proprietary algorithm based on more than 40 individual metrics, including rheumatoid arthritis relevance, syndication, presence and reach. These influencers are then ranked from most to least influential based on a unique scoring structure."

Now how cool is that?

Do you share the positive?

noreply@blogger.com (Lisa Emrich) — Sat, 19 May 2012 21:01:00 +0000

I know that when I share personal concerns related to MS, I get more feedback than when I post positive things about life. Maybe it’s that we all want to help each other when one of our community members is hurting, scared, or looking for information.

Last month I wrote about increased anxiety which was interfering with my daily life. I even researched issues surrounding anxiety and arthritis to share with the RA community since the topic was on my mind. In a way, I used news and published studies to reframe my own experience.

On a personal note, I visited with my MS nurse practitioner and together we decided to adjust my medications. I’d like to report that I’ve experienced a huge improvement in symptoms and things are mostly back to normal, just in time to spend seven days traveling next week. Also, today is Day #1 of ten days during which I will not be teaching any music lessons. This is finally my “spring break.” Yahoo.

Read this post in its entirety:

Life with MS: It's okay to be okay!! A Gratitude Friday Post

Do You Pace Yourself Regularly?

noreply@blogger.com (Lisa Emrich) — Mon, 21 May 2012 20:40:00 +0000

Rheumatoid arthritis can make activities more difficult to accomplish. It can cause severe fatigue and pain. RA can also complicate how you manage to divvy up your time each day, much less find time to exercise or stay physically active.

In a recent study, researchers in the Netherlands asked the question - “Are people with rheumatoid arthritis who undertake activity pacing at risk of being too physically inactive?” (Cuperus, 2012). (subscription may be required)

“Pace Yourself” - That’s what many of our doctors or physical therapists tell us to do. Stop before you wear yourself out or cause physical injury. Don’t overdo it.
Sounds good to me.
Read this post in its entirety:

Pacing Yourself May Be Harmful For RA Patients, A New Study Suggests

On the move

noreply@blogger.com (Lisa Emrich) — Tue, 22 May 2012 20:37:00 +0000

Headed out of town to meet up with some MSers in Europe. Hopefully, I'll have stories to share upon my return.

Carnival of MS Bloggers #115

noreply@blogger.com (Lisa Emrich) — Thu, 24 May 2012 16:53:00 +0000

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

Shakes, Battles, and Good Health

Earthquake Zone

by Janie of PasstheMSplease

Several months ago I was sitting at the computer, minding my own business, and the world shook.

It took me a few minutes to realize what was happening since most of the time I am shaking anyway. I got the picture when my dog’s eyes got really big and she howled.

Howling from your dog may not seem like much to most of you, but Buffy NEVER howls. She has a high-pitched, Pomeranian bark, which she uses every chance she gets. Otherwise, except for snoring, she doesn’t make noise. Howling was quite out of the ordinary.

Like most MSers, my hands often shake, legs wiggle and jump, back and arms buzz, etc. I have had times when I was afraid to pick up a glass or try to feed myself for fear of spilling it all over the place. Although this is not an everyday occurrence, it happens often enough to be considered a normal part of MS. When the earthquake happened, it was really strange because I could hardly feel the “extra” shaking that wasn’t coming from something I was doing on my own.

I am on several website with other MSers. It makes me really sad to read that some have quit going out and socializing with their friends. Many of them do not want to embarrass the people they are with by going out to eat and dropping things. Many don’t go to the movies anymore, shopping, or anything in the public.

I know how they feel. I have gone out to eat with my husband and he had to end up feeding me. Although it was a totally sweet thing for him to do, it made me feel so bad. I felt embarrassed, helpless and just wanted to cry. He just ignored everyone around us and kept talking and eating. He is so special!

I have been putting my thinking cap on and trying to come up with things that we can do during our shaky times that otherwise might be hard. I have the following so far, and will think about more:

Shaking spray paint
Shaking orange juice
Shaking salad dressing
Shaking whipped cream

Anyone have more suggestions???!!!

Battles

by Lori of 12 December 2008

I'd like to think that multiple sclerosis doesn't have something personal against me. I hate it, but I'm pretty sure that we're not in a fight with each other. My relationship with MS is not a battle. I will not defeat it, just as it will not defeat me. It's a disease doing what it is programmed to do. To call it a fight or a battle or a struggle against some sort of oppressor is to make MS out to be some kind of third world dictator with a huge sense of entitlement and delusions of grandeur.

If (When) I get sick again it will not be because I didn't fight hard enough or because I did not think positively enough or because I didn't go to Poland for "Liberation" or because I didn't go gluten and fat free or any of the other 15 to 20 other "Cures" that have been presented to me in the past three years.

It will be because I have a disease that is programmed to disable me. To grant it human feelings or actions is to, in my opinion, make light of the seriousness of what MS can do to me.

You can't reason, negotiate or put MS into exile or eject it from the community. Doing what is suggested by my healthcare team and taking the daily injection from Big Pharma is not some kind of moral failing. It's working with the best that science has to offer right now for my level of disease progression.

To personalize it, for me, makes it seem as though I am some how responsible for never getting sick again and if I am left blind or disabled or unable to stay awake it is my own fault that I just didn't *Fight* hard enough.

That is more responsibility than I am willing to take on.

Your mileage may vary.

Yoga and Giving Yourself the Gift of Good Health

by Cathy of An Empowered Spirit

“The body is your temple. Keep it pure and clean for the soul to reside in.” ~B.K.S. Iyengar, Yoga: The Path To Holistic Health

When I was first diagnosed with Multiple Sclerosis I was 26 years old and in good physical shape. I worked in Manhattan and walked 16 blocks from the Port Authority Bus Terminal to my office – in rain or snow or sunshine. I lived in Weehawken, N.J., a township located along the Hudson River that overlooked Manhattan. It was a ten-minute car ride into New York City – if by some miracle there was no traffic. Each day after work, when I returned home to my apartment, I would slip into my workout clothes (no leg warmers or head band!) and pop my new Jane Fonda Workout video into my VCR (for those of you too young to know what a VCR is, it is a video cassette recorder). The workout kept me in shape, feeling limber and balanced.

I moved to the suburbs after I got married in 1988 and had my son in 1992. When my son was in middle school I decided to take a yoga class. I was beginning to feel like my entire body was one tight knot, and the pounds were slowly creeping up on me. I asked my friends for recommendations for a good yoga class, and finally found a wonderful teacher at a local yoga studio. She taught an intermediate class (you know – handstands and all) but assured me she could adapt the more difficult moves to my disability (by then my MS caused my right leg to be totally numb and weakened). In the beginning my version of the “Downward Dog” (hands and knees on the floor pushing your hips up toward the ceiling with a straight back – it looks like your body is forming the letter “V”) was standing parallel to their full-length mirror with my hands pressed against it, my feet a few feet behind me, feeling the stretch in my calves and feet. My teacher had great patience with me, and weeks later I finally did a true Downward Dog with the rest of my class! Once again I began to feel more limber and balanced.

Somehow life got away from me, as it always seems to, with daily responsibilities as wife and mother. I stopped taking yoga. Months turned into years without any yoga classes. I went to a few Restorative Yoga classes at a different yoga studio, but it never felt as comfortable or rewarding. Now that I am in my fifties, my muscles feel tight and achy all of the time, and getting out of bed in the morning is a daily treat because my legs won’t work the way I want them to – they stiffen up overnight. I finally – finally – thought to myself that enough is enough. If I feel like this now how will I feel in ten, twenty or thirty years? It was time to take care of my body again. It was time to get back to yoga.

A few weeks ago I signed up for a Gentle Yoga class taught by a lovely woman whose class I’d taken a few years ago at my local library. I nervously walked into the studio with my yoga mat and blanket (dusted off!) and chose my place on the floor. I began my warm-up by stretching my legs straight up in the air while pressed against the studio full-length mirror, my arms stretched out behind my head on the floor. After the teacher began class we heard three gentle yoga chimes slowly ring in the air until their sound faded. We were ready to begin. I followed my teacher’s instruction for each pose, paying more attention to my breath with every move. We meditated with each pose, stretched every part of our body and balanced ourselves through deeper breathing. I immediately felt spiritually renewed. I knew in my heart I was in the right place doing exactly what I was meant to be doing. Again.

As we age we need to keep our bodies and our minds toned, limber and active. We need to consider the quality of life we want to have as we grow older. Three of my grandparents died in their sixties from heart attacks. My mother, like her mother, has arthritis. Everyone reading this has his or her own set of family genes to contend with. It may be heart disease, cancer, stroke, diabetes – whatever it may be, we need to think about what we can do right now to try to live a better quality of life. (Of course the reality is that life doesn’t always go according to how we’d like it to, but shouldn’t we try our best to have the best possible life?) You can consider yoga as I did, or perhaps you’d prefer t’ai chi, or another complementary therapy. Take a complimentary class first to see if the class you choose is right for you. Talk to the instructor beforehand if you need answers to any questions you may have – make a list of questions if you need to. A good instructor should be more than happy to help make you feel more comfortable with their class no matter what your physical needs are. (Of course please consult with your doctor before taking any class.) Remember, you are taking an important step forward for yourself. This is a gift you are giving to yourself – the gift of good health. Namaste.

This concludes the 115th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on June 7, 2012. 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, June 5, 2012.

Thank you.

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