Carnival of MS Bloggers #115

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.

Comments for this post.

Carnival of MS Bloggers #113

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.

Carnival of MS Bloggers #97

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

Sleeping Legs, MS Faces and Awareness, RX Yoga

Pink Kayak Blues

by Karen of Meandering...One moment please

Photo courtesy of Hubbers

One of the best things about vacationing at the lake is kayaking and canoeing. I have always enjoyed both. This year was no exception! There is nothing quite like gliding along the water silently, taking in all that nature has to offer.

As my mobility is somewhat stilted on land now, it was exhilarating to travel quickly across the water so effortlessly. I once again felt in control of how my body moves. I felt totally able bodied, and free from the limitations that disease has imposed on me.

I zipped around the bay and paddled out on the big lake for about an hour. As I headed back to the cottage, I noticed that I no longer felt any pain in my lower back or legs. The transverse myelitis plagues me with a considerable amount of pain most days. Wow, kayaking and nature surely is the best medicine I thought!

As I beached the kayak on the rocky shore, the excitement of being pain free slowly turned to concern, when I realised that I couldn't feel the rocky ground through the underside of the boat. Not tending to be an alarmist, I continued to maneuver the kayak to a stable resting position so I could climb out.

If you've ever been in a kayak, you know that the only way out, is to pull yourself up, back, and out from the tiny opening. It usually works pretty good by using your legs to push against the front of the boat, as you lever yourself up with your arms. I kept trying to hoist myself from the confines of the small space where my legs rested. It wasn't working!

I couldn't get out of the boat! I couldn't get out because I couldn't move my legs at all, nor could I feel them! There was no one down at the dock, and the cottage is a considerable way up the hill, so calling out for help was useless, because I wouldn't be heard. It was about at this point that the panic set in.

There I was, stuck in a little pink kayak, numb from the waist down, with arms flailing, while making bizarre squawking noises. Thankfully the scene was eventually noticed by Hubbers, who was on the upper deck sorting out his fishing tackle. I think the squawking noise was what caught his attention.

He managed to haul me out of the little pink prison, and settled me on the sand, where I laid like a beached whale. Convinced that my legs had just "fallen asleep", I protested the urgent suggestions that we should take a trip to the nearest hospital, (which wasn't that near).

After a while laying flat on my back, searing pain started shooting from my toes up to my hips. Well, this was surely a good sign! Pain equals feeling, and feeling equals not paralyzed. I regained almost full feeling in both legs, (along with full pain) over the course of the next few hours.

The doc said that the angle of my legs in the kayak, put pressure on the spinal cord, smack dab in the area of the cord that has already been damaged by the TM. That pressure in turn compressed the cord further and caused the temporary paralysis.

There you have it... I knew my legs just "fell asleep"!

To be on the safe side, I have scratched kayaking off the list of fun things to do up at the cottage!

The Real Face of MS

by Laura of Inside MyStory

Do you grow weary of hearing the inspirational tales of people who have MS but still conquer the world?  Do you have trouble identifying with the athlete who just ran, swam or biked across the world in the face of MS or the person who climbs into the ring with a raging bull and emerges with the championship belt? The list of motivational speakers includes a wide variety of talents and skills and they mean well, but it can be difficult, if not impossible to relate to their message.

It’s a mystery why this disease affects all of us differently and I don’t begrudge those people who appear to have benign Multiple Sclerosis – that mild disease that may not even need to be treated. Kudos to them being able to continue living life to its fullest, setting lofty goals and working hard to achieve them and I certainly don’t want to take away from their successes, but I have trouble relating to these super-patients.   Their normal of living with Multiple Sclerosis doesn’t compare to the normal of the numerous people I know who have this same disease.

The best human interest stories and inspirational tales for me don’t come from the globe-trotting, super achieving people with MS.  The real people living day in and day out with the struggles make the most inspirational witnesses to the human condition of living with Multiple Sclerosis.

Let me hear the experiences of the primary progressive MS patient who regularly lobbies on Capitol Hill in Washington, DC, to keep awareness of our needs in the limelight for legislators.  Now this is someone I should wish to emulate.

How about the single mom whose partner decided to leave rather than stay in the trenches with Multiple Sclerosis?  Recently I heard that 70% of people living with MS end up divorced; how do those people who are left alone, often with children to raise, manage?  These people only have themselves to rely on for their daily needs. There has to be a tale or two about their highs and lows that would inspire me to not give in to this monstrous disease and its unfortunate side effects.

Or maybe I can learn important lessons from the person forced onto disability from their dream profession, because MS doesn’t discriminate and strikes people from all walks of life.  What does it take to maneuver the maze of assistance programs when you lose all your assets and your identity to this disease?

There are as many stories as there are people living with MS; they may not all have happy endings, but there are lessons to be learned from all. Life with MS is not a happy fairy tale, but more like one of those tales from the Brothers Grimm, where life is often cruel. Give me the real life stories of emerging from the dark side of MS with new direction and a sense of purpose.

What Is Our Role?

by Judy of Peace Be With You

We MS bloggers
comprise a small percentage
of those who are ill.

Are we a voice
for largely silent people
who need to be heard?

What is our role?
Just simple self expression?
Must we advocate?

Marathon Not Sprint of MS Awareness

by Diane J Standiford of A Stellarlife

As I have aged (like fine wine, uh-hem), my need to make people aware of multiple sclerosis has increased. Funny, but I expected the opposite. As my own knowledge and experience grew, MS became a bigger unknown to my worlds.

There was my work world. I was only in my thirties and full of energy! I started a disability group for employees (not ONE member had MS). I explained about MS while riding my scooter to city council meetings, to jury duty, on buses, in Starbuck's across Seattle! Then I moved to an enclosed community in gay-Seattle and began my awareness quest there. My struggle to get around with my cane was epic, and it led to many discussions about MS. I fought to make the public restrooms of my mixed retail apartment building accessible, I wrote letters to the theater chain asking for isle rails, I met with city sidewalk engineers to fix broken ramps and install new ones where needed. MS, MS, MS

By my fifties I moved to a retirement community, average age 85, and my energy for all this awareness making has run flat. Not a day goes by when eyes do not look at me in my power chair and wonder, "WHY is SHE here? In THAT?" I have considered a hand-out, the book with one of my short stories about MS located in the library here apparently is not sufficient. (Though the first one I donated was stolen, causing a bit of a brouhaha, so some residents actually wanted to read it...)

Shocking to me how many of this age group are so unfamiliar with MS. Keeps me wondering who is doing any MS Awareness for us? A once a year walk just isn't enough, and what does that do? It shows people laughing, walking, maybe a power chair here and there. But mostly a party atmosphere---how are people learning about MS from these events? (Sponsored quite often my at least one drug company.) I remember the one I went to. Finding transportation there was a joke, and the volunteers tossed me a T-shirt, "You can put this on over your shirt."

When I said I couldn't lift my arms up, they looked at me like I was an alien. Good grief. I ended up leaving after they couldn't find a place for me to sit and were having so much fun laughing among themselves about a movie they had seen...well, I just zoomed as fast as I could in hopes of catching the ne'er-do-well Access Van service before it left.

So, it seems I will be spending the rest of my life supplying MS Awareness. Fifty years ago, I am sure some other woman with MS spent her life doing the same thing. Though, when I was five years old I was hearing about MS from TV ads, magazine ads, radio, "MS. The crippling disease of young adults." A few more of those ads would make my task a lot easier.

Fist pumping with Dr Miskin

from Melissa's Madness

That was my Facebook status yesterday. Was I really jumping around the office with my neurologist with fists in the air? Uh...no. Actually the very thought of it almost makes me drop to the floor hysterically laughing. All kidding aside, my routine appointment went well. I am set up for an EEG and MRI. He did say that my strength is good, but after watching me walk, that my balance is a little shaky (which now that I think about it, I did notice). I asked him if he could recommend anything specific to help with that. He said going for walks (duh) and doing yoga-esque balance exercises. Here's the thing. Years ago I attempted yoga at home and didn't like it. Now, like I said, this was years ago. Pre-Alison...Pre-MS diagnosis. I think at that time I maybe got bored with it, but to be honest with you, I only did it for a week at most. With my mind-set nowadays, my doctor is recommending it, so I'll absolutely give it another shot. At this point, I'm just glad I didn't get another prescription written out for me. I stopped at Target yesterday (shocker) and purchased Jillian Michaels: Yoga Meltdown, so we'll give it a go. He also wants me to continue the strength training I have already been doing.

OK...yoga time. Fingers crossed this goes well.

UPDATE 11:50 AM: WOW!!! That was so much different then I remembered!!! I really liked it! Alison just told me that I'm "sweaty and gross" so it must have been a good workout. ;)


This concludes the 97th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 29, 2011. 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 27, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #58

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

Life with Multiple Sclerosis

The Perfect Ending!
by Paula of MS Scars 2 Stars

My report on my first time Dahn Yoga class experience is almost at the end. But I did promise to be candid in my experience and express my thoughts about the event, and I want to try to convey the support that the other participants gave to help each other. This was very clear to me when I attempted to get off the floor, but more about that later. I was of course unable to stand on my own and I was sitting in the middle of the floor. So with the help of my husband and others I was pulled to the nearest wall for support.

As I sat with my “back against the wall” I thought to myself; that is what the phrase means, “Got your back against the wall.” It was very supportive and solidly reassuring, although I knew I wasn’t going anywhere without help. Then strangely, everyone else sat down on the floor in a circle around me. We were asked if we would like some hot tea by our instructor. After serving us all a cup of tea, she sat on the floor and giving each person her attention asked each of us individually “How did you feel about the exercises?” How has the routine helped you? Everyone shared their thoughts in a group therapy style atmosphere quietly sharing their accomplishments. After, the tea and sharing was finished everyone was ready to leave the session.

Now it was time for me to stand up, everyone offered eagerly to assist me. But the smallest lady in the class affirmed she could help me stand very confidently. I thought, sure this attempt would be human folly. After all I had warned them that they would need a crane to get me off the floor. But, she looked me over and asked if I was ready, and before I could reply with “I don’t think you can…” I was standing. That was as big of a highlight to my day as getting on the floor. I am by no means recommending this be tried by everyone because, she later stated that she had worked in a hospital and had some formal training and experience with people who have trouble walking and standing.

The class was over and I felt great, lots of energy but relaxed!

I'm a ScatterBrain by Lorraine

Some things you see with bad vision are funny or
creepy, like a rubberband that looks like a cockroach.

Today everything seems to be seen through a
screen of fine silk, a pale green. sheer and almost white.
And then there are almost not-there
pale pink batik blotches all over everything, do you see it?

I can almost remember this scarf,
ancient and frail, the green & pink so faded as to be
almost the same, and bouncing around when I look away.
I think that scarf belonged to Lee's grandmother,
when they
went to live in a home, a Home, they left behind a life

went to live in a home, a Home, they left behind a lifetime's worth of
of junk that was unworthy of the move and the limited
space at the new Home. We went one morning (after
AmPm, or what was the other one that opened after
Laight Again closed for the morning? '

We had been out all night, not drinking 'cause Lee didn't
like the way I acted when I drank, funny to everyone
and

slutty. This was fine, we were both a hilarious buddy
road-trip movie,
buncing from set to set. So we arrived at the
grandparents old
apartment
to pick through all their crazy wild stuff. The grandmother
seemed to have been a flapper, with these tiny-size
delicate-brazen heavy silk with beads beading all
beads beading all
up & down, and long bead-string fringes. Lee took all
the tiny sexy women's stuff, and I took one frail
scarf of hers, the rest the old-man stuff,
green & gold seersucker,
legs barely more than shorts.
now I am seeing everything through a shadow of this
disintegrating scarf, too delicate to survive except burned
just slightly into my retinas forever.

The Grandfather also left a stunning pair of huge swim
trunks, I bound them up with a studded belt, just the
skinny knees and then the cowboy boots. We were
such a beautiful pair, really too bad I didn't want to be
in love like that, her girlfriend, and she always knew
"I" would leave "her" for some man as I did almost every
night, as she did even more,
her plans of lesbionics forgotten
for any gaunt-faced guy, who, even better, if he looked
like a junkie, the jaw dropping down like that can really
make those cheekbones shine.
She feared I would leave her to have kids,
with my wide hips & like my mom had done,
get pregnant and get married in the tradition of....

But years later Lee came back to town with her baby girl,
and her
husband waiting at home in San Fransisco
at his blotter-crazy museum and whatever family furniture
or knickknacks that would accumulate in the gravity of
my gone, gone Lee.

I got married too, but it was imaginary. But
everyone saw we were so close, and we had
a wedding so beautiful in the huge snowflakes outside,

and three professional photographers taking even 3Dimensional
shots.
a wedding so beautiful in the huge snowflakes outside,

These giant flakes could also still be blurring
everything
I look at, like if the flakes would melt on my open eyes,
there would be tiny searing flashes of white that was
almost
pink,
then flickering to almost green, but really so
confusing in that almost-there way, I really can't see
anything through the invisible batik blotches.


TURNS OUT--
I was telling this story to Charlie,
or some part of it,

and he revealed the source of my confusion, this

horrible odyssey that ended with Spackle run outside
and lost in the hall, of course I was exhausted, and not
used to wielding the walker and blocking the cat-bolt
at the same time, and so tired after falling in 14th street
barely catching myself with my finger tips on the honking
dead-stop cab. And staying up til 7 am and waking up
at only 8, and so tired still. He explained that all this
happened in real life
but over nearly three days without sleeping....
not just in the single day that I was trying to
create for myself,
piecing all the memories together best I could into ONE day
and how awful my made-up memory of that day was.

Of course, Charlie had claimed Spackle and she was fine,
Zoey had found her in the hall, a beautiful angel
to sweep up my pit-cat, big shouldered but trembly.

Spack gave Charlie the full body fluff when she bolted up
the stairs and into our embarrassing mess. I guess
Lorenzo saw all the crap everywhere, but it looks
right now likeI am typing on the face of this page, and the BG image
is bouncing from the contrast of the pink & green,
bouncing just fast enough to obscure everything
I have written here.

note: 05/08/09 seems story could end HERE
if not sooner

EMAIL TO FRIEND:

Hi,
your letter ends perfectly "g'night." I'm so tired and
having trouble piecing the day together,
How did I go to the grocery twice?
I must have forgotten something important, I was
pre-occupied with scones all day.
I know, enough with the damn
scones, they are tasteless blobs
of overcooked dough. The best.

Today I stopped in the coffee shop to sniff the forbidden
beans.
They had a misshaped lump labeled "scone,"
and it had an odd greyish shellac, like some stale glaze
that was reverting
to powdered sugar right before my eyes.

No wonder I fell in the street, but that was yesterday now.

And then there are almost not-there
pale pink batik blotches all over everything, do you see it?



This concludes the 58th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 8, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 6, 2010.
Thank you.

Comments for this post.

Carnival of MS Bloggers #43

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

Yoga, Tysabri, and Insurance

For My Students: Yoga Invocation 
by Nadja

When I teach yoga I like to give freely of myself, to nurture my students and to help bring them closer to their true selves.

Nevertheless, I get as much out of my teaching as they do. Teaching yoga gives me a home, a place of sanity to stand when all I want to do is howl at the moon. It reminds me to breath. It reminds me of my favorite prayer by Saint Francis of Assisi:

"Lord make me an instrument of thy peace
Where there is hatred, let there be love
Where there there is injury, pardon
Where there is doubt, faith
Where there is despair, hope
Where there is darkness, light.
Oh divine master--
Grant that I might not so much seek to be consoled, as to console
To be understood, as to understand
To be loved, as to love
For it is in giving that we receive,
And it is in death to self
That we are born to eternal life."
Amen.

My heart is filled with gratitude for the things I receive from teaching yoga. I bow to my students. I bow to the teacher in all things. I prostrate myself to the divine with the faith that I will find a way no matter what.

Let yoga be your candle in the dark.
Let it lift you and fill you.
Let it in inspire you
Take what you discover on your mat into the world
And create peace, love and harmony.

Tysabri and Little Pieces of My Life
by Azoyizes

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.

Getting Squeezed
by Lisa of Brass and Ivory

This week I received the annual note from Carefirst BCBS, my insurance company, informing me what my new health insurance premium rate will be for the upcoming 12 months. Of course, I expected that it would go up, no matter how I wished it wouldn't.

What I didn't expect was HOW MUCH it was going up!! 31% increase

OK, so it's not the first time the rate has gone up substantially -
In 2003, it was 22.2%. In 2004, 18.2%. In 2007, 19.9%. In 2008, 18.8%.
(see graph below)

But COME ON. Enough is enough. another 31%?

For insurance which doesn't pay for my MS medications, I will be paying $5172?

That's just for me, no one else, and is not subsidized by any employer since I am self-employed. And unlike most folks who have employer-sponsored health insurance, I will be paying Social Security, FICA, etc taxes on that $5172.

Why doesn't Carefirst cover my main MS medication, Copaxone?

• Because the drug benefit for individual policies is capped at $1500 annually.

How do I get Copaxone if insurance doesn't cover it?

• I have to qualify for assistance from NORD which administers the PAP.

How do I do that?

• I must earn less than 200% Federal Poverty Level (FPL) and can't have significant amounts of money in savings.

How much is 200% FPL?

• This year (2009), it is an Adjusted Gross Income (AGI) of $21,660.

For more on this story, see The Value of Money or Value of Health: What Do You See?

Now, to be fair, the $5172 in insurance premiums will not be 24% of my 'total income.'

Since I'm self-employed, I get to deduct the amount spent on health insurance premiums before income taxes are calculated. So it's a minimum of 19.3%, after Social Security/FICA tax is accounted for and before the AGI is calculated.

But, please tell me. Who can afford to spend 19-24% of the highest level of income they can afford (or are allowed) to earn for health insurance premiums?

And let's just say that for 2008 I did earn considerably less than 200%. In fact, $5172 really would be closer to, if not more than, 25% of total income.

According to proposed health care reform legislation, affordable premium rates for someone with my income level would be closer to 5% of income AND I would very likely have coverage for my medical needs, including pharmaceuticals.

A few weeks ago, I sat down and calculated what medical expenses were included during one year in obtaining the routine care I require. That detail can be read at Living with Multiple Sclerosis: The Cost of Chronic Illness.

Update: Now it looks like the Public Option just might get dropped during negotiations in Congress. sigh.


This concludes the 43rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 10, 2009. 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 8, 2009.

Thank you.

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Carnival of MS Bloggers #41

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

Symptoms, Yoga, and Dignity

Vent and Symptoms
by Casey

I get so frustrated with people telling me that my symptoms aren't real, that I just need to get over it or that they know someone with MS or TM and their symptoms were different than mine so I don't have it and it has to be something else. First of all MS/TM can affect each person differently so just because one person doesn't have pain in a certain area doesn't mean another person can't. Also, these illnesses are hard to diagnose and can take years. Lesions don't always appear on MRI's and results don't always appear with a spinal tap. Sometimes the diagnosis is based on ruling everything else out, the symptoms alone, and evidence that an "attack" has happened more than once.

I have found through my journey that people can either be really caring or on the other hand not care at all. I have found out who my true friends are, I have lost friends, and have been disappointed by friends who pretend to care but don't really show it. These illnesses don't just affect you physically but emotionally as well. It also affects the whole family and not just the person with the illness. I would give anything for this not to have happened to me. I miss the way I was. Mostly I miss being the wife and mother I was and pray that one day I can get that back.

The following I found on a blog of a woman who has MS and thought I would share. Even though I don't have a diagnosis of MS at this time I do have the majority of these symptoms and thought this would be a good way to share with others what it can feel like! I truly hope this well help some people understand what I am going through and realize that it is just all in my head, I am not being weak, and this isn't just something I can get over. [See MS Symptoms - What It Feels Like]

Video: Cooling Breath
from Suzanne
of Yoga Empowered Online 4 Multiple Sclerosis

YaoW! It's hot! Here's a breathing technique you can use to cool your system.

Remember - NEVER STRAIN THE BREATH! You can easily cause yourself a panic attack by pushing to hard. Find a breath speed that's comfortable for you. Especially with MS- we want to soothe your system not aggravate it! Smooth Steadiness & Ease. Please honor your body!

So this technique- You wanna be cool not look cool :o)

Find your easy seat. Spine straight and tall, hands on knees or in your lap. Roll your tongue or pucker your lips like you're sipping through a straw. Inhale- tilt the head slightly looking up as you breathe in coolness at the lips. Exhale- tilt the head slightly looking downward with your tongue at the roof of your mouth breathing out through the nose. Gently tilt the chin up & down not causing any strain.

Practice this technique for 10 breaths or 5 minutes- whatever you've got time for - even doing just a few breaths should help cool you a bit. Hope this helps you Stay Cool! Rock Your Practice! Xo- Suz

PS- This breathing technique can be used to bring coolness to your system, to calm the nervous system and to quell hunger or thirst. :0)

Do I stay or do I go............... 
by Herrad in Amsterdam.

I visited Judi’s blog @ Life as a Hospice Patient last night and read her latest post where she says she is sick of being sick. I know so well what she means about being sick of being sick.

I am really sick of it! Everyone with MS or another degenerative disease is sick of it I think. It is 3 yrs since my MS diagnosis and I have gone from walking and independent to needing help 24/7 and to lying in bed 24/7.

What is very hard to take is that there is no prospect of getting better just progressively getting worse. Yet every now and then I still do a double take as I realise that even though I am doing my very, very best, I will never get better!

That is not how it is supposed to go; it is supposed to go like this: the doctor does the diagnosis and then prescribes a course of treatment which you follow and get better and better and can then resume your life.

Not with MS and certainly not with Primary Progressive MS, I gathered that from the first day that I knew what was wrong with me. Saw right a way on the internet that there would not be any treatment because there was no treatment for MS just a variety of drugs to slow down the progress of the disease.

I have known all along that there is no prospect of recovery only getting worse with the only relief that I can let my doctor know when I have had enough. Then the delightful Dr Wijngaarden will come by and administer a drug that will put me to sleep and then she applies the drug that stops my heart after some minutes.

It is not a pleasant prospect but better than lying here unable to talk, to type and to even see and swallow. I know about all of this, that is why I have chosen euthanasia but I just can not understand how it can get to me big time, time and again that I am so very upset that I will not get better.

Took me some time to work out that there was no hope of recovery, the big trick is to keep hope alive while knowing there is no hope of recovery. Maybe it is because we have grown up believing that the doctor will make you better and this time they can't do that.

Took me some time to work this out had not thought of this aspect but of course that is what I have found so disconcerting from the start when it became all too obvious that I/ we were on our own with the diagnosis. I wonder if you recognise that too?

I try to make the best of the good that is in my life like my darling Richie and friends and still being able to be here and now. As long as I can communicate, can talk, write and read and I can eat and drink, I can put up with the pain as I am still getting the what I need to live.

It is reassuring to know that in The Netherlands I can chose the moment when I have had enough, unlike people in England who can not say, this is enough now and who will be kept alive no matter what.

Even though it is not life as we have known it unless you think that not being able to talk, speak, see or swallow would qualify as life as you know it. I do not think that lying in bed not being able to participate in the life around me or in my community would qualify as life for me.

Don’t understand why there is so much negativity towards giving people the right to self determination over their own lives. In England the Moral Majority keep banging on about helpless people being forced to accept euthanasia and refusing to look at the real heart of the question which is people deciding when they have suffered enough and wanting to exit.

It is a question of a life of pain with no prospect of any improvement and not what they, the ‘Guardians’ like to pretend it is about; they like to propagate this myth that to pass a law allowing Euthanasia would put handicapped people at risk of being euthanised.

In England they practise Euthanasia by the back door, they will increase the dosages of pain relief such as morphine to such a level that you are kept in a sort of coma. Then steadily increase the dosage so the person slips from coma into death, this is what they call palliative care.

Anything but allow people the right to decide when they have had enough pain and do not wish to live totally dependent, hooked up to machines to keep you alive and totally incapable of taking part in life.

I personally can not think of a worse way to end my life then totally out of it on opiates attached to a machine that does my breathing for me and another that feeds me intravenously. That would not be what I would like to happen to me, everyone has the right to decide for themselves.

Shame that there is no real debate on the subject instead of just using the red herring of people being forced to request euthanasia. As far as I can see the current method of euthanasia is via the backdoor of palliative care.

‘’Euthanasia is popularly taken to mean any form of termination of life by a doctor. The definition under Dutch law, however, is narrower. It means the termination of life by a doctor at the express wish of a patient. The request to the doctor must be voluntary, explicit and carefully considered and it must have been made repeatedly.

Moreover, the patient's suffering must be unbearable and without any prospect of improvement. Pain relief administered by a doctor may shorten a patient's life. As is the case in other countries, this is seen as a normal medical decision in terminal care and not as euthanasia."

I am glad I live in The Netherlands where I have the choice to make use of the law on euthanasia.

Would it not be a more honest world if people could decide for themselves how long they wish to live with consuming pain, if they are suffering from a degenerative or terminal disease. Let us look behind the governmental smoke screen and demand a discussion and a change in the law now for a more people orientated approach.

It is a very pleasant afternoon here which I intend to enjoy hope you do too.

In the News: Biotech Bottleneck
from I'm an MS Activist

With a name like the Affordable Health Choices Act, you'd think the health-care reform bill that passed the Senate Health, Education, Labor and Pensions Committee this month would have made an effort to provide affordable health choices. But instead, the bill includes a provision that would create a 12-year market exclusivity period for brand-name biologic drugs. This would drive costs to consumers above even current levels, making the title little more than a mockery.

Biologic drugs, medical therapeutics derived through biotechnology techniques, are an important and ever-expanding field of prescription drug innovation... Prices for a single course of a brand-name biologic can soar into the tens of thousands of dollars, and this is not likely to change soon. Big pharmaceutical companies maintain that a lengthy exclusivity period in addition to the patent protection they already receive is necessary to drive continued innovation...

The Obama administration has favored a seven-year exclusivity period, characterized as a "generous compromise"...

There is still time for action. In the House, a pending amendment would offer a similar 12-year exclusion period, but there is an alternative: a bill put forth by Reps. Henry A. Waxman (D-Calif.) and Nathan Deal (R-Ga.) that would limit the exclusion period to five years. If Congress is serious about health-care reform, it must take another look at whether its legislation truly balances incentives for innovation against the need for price competition.
This is an excerpt from a July 28 editorial in The Washington Post. Read the full article here.


This concludes the 41st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 13, 2009. 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, August 11, 2009.

Thank you.

Comments for this post.