Gratitude for MS Friends Worldwide

I remember when several of us MS bloggers had a chance to meet in person for the first time. Meeting face to face and getting to know one another was a transformative experience; since that initial gathering we’ve become longtime friends, continuing to meet whenever we can and frequently communicating and supporting each other online.

During the past seven years, I have been fortunate to travel throughout the country to advocate for MS patients. I’ve participated on panels and spoken at conferences. I’ve even traveled to Switzerland twice to represent the interests of MS patients.

Now, I am more than a musician. I am a patient advocate, writer, speaker, consultant, educator, and champion. I also am just trying to live the best life I can with these unpredictable diseases.

Read this post in its entirety:
Why I Am ThankFul For My MS Friends Around The World

Moving Past Guilt to Gratitude

Guilt can be insidious. It serves to keep us down and tends to worsen our impression of its root cause (no matter what that cause, external or internal). I’ll boldly say that much of the time we make ourselves feel guilty even when our loved ones are supportive and wish the best for us.

But what if the guilt is coming not from the several things you can’t do, but from the things you CAN do?

Sounds silly, doesn’t it? Feeling guilty for being ABLE to do things or feeling self-conscious about sharing positive news or about enjoying a bit of that elusive thing called remission.

Not long ago I was at a meeting with other people living with RA during which we were asked as a group about remission. What does remission mean to us? Who had achieved remission?

I have a confession. I was hesitant to say too much because unlike some of the other RA folks in the room, I agreed with my doctor when she determined I was currently in remission. During a recent appointment, I reported no pain or swelling during the past couple of months. (Never mind, I honestly forgot about the minor flare-up I experienced earlier in the summer while we were talking).

I had no tender or swollen joints when she examined me. My inflammatory markers remain low.

I’m doing great!!!

I feel guilty saying so because I know that so many people are not doing well. There is so much pain and angst within our online RA community that sometimes it feels unfair to talk about the good things. But I was encouraged to do just that.


Read this post in its entirety:
From RA Guilt to Gratitude

Carnival of MS Bloggers #135

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

Lucky Girl

from A Little of Everything

I constantly see a lot of posts about lack of support for some people with MS. I guess I've been very lucky, my family and friends have been nothing but supportive. I think it's very important for people in our lives to be educated about MS and the effects can have on someone.

Someone can look perfectly fine, but could be having muscle spasms and pain, that they just aren't calling attention to.

The most important part, in my opinion, is trying to keep the persons stress level as low as possible. Also family and friends understanding that. It's not always possible,
but I have found cutting out negative people or situations have helped a lot.

I don't think I would have been able to get through this far without the support system I have. And also knowing the people I don't talk to everyday, or for a while, sometimes give me the space I need. And still love and support me regardless!

I'm a very lucky girl.

With a Grain of Salt

from Needle Fatigue

This week was a slow week for news on the MS front.  Only one article in my Medical News Today-Multiple Sclerosis news feed: Salt May Play Role In Autoimmune Diseases

Anyone in my family would know why that headline got my attention.  It’s because — with maybe two anomalous exceptions — my people are… salt monsters.

When my clansmen go to the Chinese restaurant with the saltiest hot and sour soup in the world, they add soy sauce.  The only thing I think I have ever seen spared from the salt shaker is ice cream, and I’m not actually sure of that.  So one might think I’d be a pretty damn good candidate for a study of salt consumption and MS.

But the thing is, if you ask my family, as an adult, my devotion to sodium chloride has been pretty weak.   (It may be worth noting here too that I’m the only person with MS anywhere in my family, that we know of.)   I’d say that for the last ten years — and well before I had my first attack — my salt intake has been half of what I consumed as a wee salt monsterette.  All of my snacks are indecently raw and healthy.  I use low-sodium soy sauce.  But not all the time.

Recently I’ve read some interesting books on “intuitive eating” (if you’re interested, try this one) and found that that’s pretty much how I already go through life.  I figure if I crave a nice bloody steak (which isn’t often), there’s probably a good reason for it. And sometimes I shove aside the low-sodium Kikkoman and reach for my jug of tamari.  I’m less happy about the sneaky items in my kitchen that seem healthy but probably aren’t — that innocent box of rosemary-olive oil quinoa, with the sinister “spice sack” inside…

If you have MS, you probably get asked this question a lot: “So are you on a special diet to treat that?” This is something I’m still investigating, but I’m pretty sure the scientific consensus is that there is no diet that will prevent the progression of MS.  There are diets that might make you feel better — generally speaking — and I plan to write about some of that stuff here — but if there was an actual diet that could stop MS, or even better reverse the damage, I think we’d have bloody well heard about it.

So, the salt issue is something I’m just going to look at as one more of those nutritional areas I can improve on.  And after all, if it’s just being considered as a cause of MS, the horse is kind of out of the barn there.  And as the studies in Nature  point out, it’s only one of many.  It reminds me, on the day I was diagnosed officially, I asked my neurologist: “So you said there are all these  ‘environmental triggers’ that cause MS — what are they?”  His answer was “If I knew that, I’d have a Nobel Prize.”

And on that note, hot and sour soup sounds really good right now.

YouTube Therapy: Making MS Manageable with the World Wide Web

by Katie Brind'Amour of Healthline.com

Although progress in the treatment of MS has been slow, individuals with this condition can at least be grateful for one of the best free resources now available: the Internet. This venue for at-home treatment clearly should not replace treatment advice from your own physicians, but things as simple as YouTube videos can offer a new world of simple symptom improvement advice that can improve your daily life.

According to Healthline.com, the type of MS you have or the degree to which your MS has progressed will impact the type and severity of symptoms you experience. Always remember that your own at-home treatments should be tailored to the severity of your condition—start small, and work your way up!

Use YouTube advice to get a handle on bladder control problems. These Pelvic Control Tips offer viewers five strategies for keeping it in. By doing exercises daily, you can both prevent some bladder problems and improve symptoms you may already have.

Get your balance with simple home-based exercises. For those in early stages of MS or with periods of total remission, more advanced balance exercises may be appropriate. For those with more difficulty balancing or a more advanced stage of the condition, balance techniques designed for seniors may be more comfortable. Regardless of your ability level, start all exercises close to a bed, countertop, or wall that you can use for support and stability in case of a totter or fall. Check out the video instructions for guidance!

If you want to avoid losing your hand-eye coordination as long as possible, YouTube has an answer for that, too! Try early preventative exercises (that require agility) to hone your hand-eye skills. Start with a basketball (sitting, if needed), and work your way up to the tennis ball as shown. For those with more difficulty, try one of the numerous videos for children to rebuild your hand-eye coordination. Stringing beads or foam onto a pipe cleaner can be tough at more advanced MS stages!

Another problem that commonly accompanies MS is depression. Use YouTube videos for a little meditation-like pep-talk or learn tried-and-true strategies for fighting depressive symptoms naturally. If fatigue is a problem for you, consider searching out freebie videos like this little clip of using yoga to fight fatigue.

Finally, we all know that MS can negatively impact both concentration and memory. Although options abound, try this video to learn a single exercise that may improve your ability to concentrate during a task. Memory techniques may be good to mix up from time to time, but advice on starting to improve your memory can be key to getting your at-home training off the ground.

No matter what you choose to focus on—just one symptom or a bit of everything—it seems like a bit of a blessing to be living in such an electronic age. Take advantage of everything YouTube has to offer for making your at-home preventive efforts as effective as possible!


This concludes the 135th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 28, 2013. 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, March 26, 2013.

Comments for this post.

Carnival of MS Bloggers #128

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

Happy Thanksgiving

Thanksgiving Prayer 2012

from the life well lived blog

I was a bit surprised when J suggested maybe A was ready for some more adult prayers. When asked, she meant the more adult prayers where we tell God what we want or need. I was kind of taken aback. I haven’t prayed that way since hearing a Riverdale
Baptist high school soccer coach lead his team in prayer before playing us by asking God to grant them victory, and then leading them in a public confessional to try and explain why God had let them lose to us.

Somehow keeping my relationship with God one where I can simply be thankful for all I have been given seems more my speed. If my wife or kids ever ask for an older prayer, I suppose I could lead them in a “Pater Noster” or an “Our Father” with or without the “for thine is the kingdom...”

Until then, I will keep my prayers to what I know.

• I am thankful for every day spent with a family who love and forgive me.
• I am thankful for the resilience of mind and body my kids show daily.
• I am thankful for a home in which to be comfortable.
• I am thankful for the love of our three dogs and the riches they imply we have.
• I am thankful for a job on which I am still challenged to learn something new every day.
• I am thankful for friends always there in time of need.
• I am thankful for the advances in medical technology allowing me to even consider running a half marathon in a couple of weeks after seven and a half years of MS.
• I am thankful for every sunrise and sunset.
• For every beginning, middle and end I witness,

Thank you.
Amen.

"short" blocks (Sandy vs NYC )

by Lorraine of I'm a Scatterbrain

These are giant community compost bins; empty, they each weigh half a ton.
This is a little ways downtown from me... and on the river, so also three
"long" blocks away from me.

I realized the the MS society fitness thingys began at the start of October,
and this time I can't blame my laxness on their SHITTY web site.

Even so, these things run vaguely once a week, with no clear reason why some weeks are off, to it is a fucking pain in the ass to enter them all in Google Calendar. Yes, I love my abductors, total Stockholm Syndrome, and Google knows all my teensiest bits of data.

This is an example of my occasional yearning to have a smart job again,
I would like to make the MS web events be "google-calendar" accesible.

I thought I could go back to web-D when I was unable to tend bar because
of MS, I thought, well, I'll just teach myself the new web coding just like
I taught myself the old coding.

This photo (left) is by my downstairs neighbor, Eak the Geek.

The next day he, Jennifer Blowdryer
and I went to the Key Food to get food out of the giant dumpster (they couldn't give
it away in case it was rotten, but tons of it was frozen, anyway, I didn't want to eat, just see the spectacle). I would like to train myself out of saying wrong things, like "tons," or "a lot," but in this case it seems fitting?

He was away at law school and I wanted to get ahold of him for some co-op reason (I was on the board of directors, ha ha, back then), and HE the reason I first went on Facebook, because where ELSE could he be? ... Well, myspace wasn't quite dead yet.

J. B. and  I ended up being foul weather friends and having too much wine and going to see all the trashed areas in our tiny neighborhood.

The blackout here was from Monday to Saturday, and we were up and down the stairs
between our two apartments for silly projects like prying open an old boom box to add
batteries for radio or what...

what else??? there was so much nothing we did in the dark together.

Actually, I had more social life after the storm, in the dark, than any time since Charlie...

Charlie called me several times before the storm and after. He still calls me Hon and Babycat, which makes my spirits SOAR.

Not for long of course, and when my mood crashed it was very easy to brood in the darkness about a-a-a-all the bad things in life. Like Indian Point being not that far away, and right after Japan, no wonder I dwelt.

I told EVERYONE that I was nowhere near the storm, but today I put this on my brother's Fbook -- Hey T, this was nine "short" blocks from my place (don't tell Mom or Dad, BWAH ha ha ha)

This concludes the 128th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 6, 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, December 4, 2012.

Comments for this post.

Do you share the positive?

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

Carnival of MS Bloggers #106

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

Gratitude, Anger, Nostalgia, Freedom, Balance

A Small Stone: Jan 13, 2012

by Laura of Shine the Divine

.שַׁלָ נְעָלֶיך, מֵעַל רַגְלֶיך--כִּי הַמָּקוֹם אֲשֶׁר אַתָּה עוֹמֵד עָלָי, ואַדְמַת קֹדֶש-הוּא

Take off your shoes from your feet, the place your are standing upon is holy.

(Exodus 3:5)

I look down at my two seemingly ordinary feet, veined with time standing firmly on my favorite yoga mat, the sunshine yellow one that has traveled many miles in the past to retreats and teacher trainings, to classes and workshops where I too have had the privilege of being called teacher. This mat rolled like a scroll in the corner of my bedroom, waited ever so patiently for my body to be well enough to return to its sticky, yielding surface. Now unfurled lovingly, naked soles press down, I hear a voice resonating deep within: the place you are standing upon is holy—this is no ordinary moment, it is suffused with healing, pay attention, be present.

For one who has struggled fiercely with standing and walking over these three years since being diagnosed with MS, this place is indeed kadosh, holy. I am grateful.

I'm an Angry Bird

by Karen of My MS Journey (MS stands for Miss Sexy, right?)

When I was a bereavement counsellor, I had a client who was "stuck" in her grief and at every session would wail "why me?"  As a non-judgemental counsellor it was my job to help her through these feelings but I have to be honest, there was a tiny part of me that sometimes thought "why not you?"

Fast forward a few years and as I face this new challenge of MS I have been all over the place with my feelings, even dipping into a little bit of "why me?" but as I thought of my client - why NOT me?

Of course it is only two short weeks since I was officially diagnosed but since my first Neurologist maaaaaaaaany years ago, the symptoms that I have been experiencing over the last couple of years fit MS so much that I suppose in some ways I had almost diagnosed myself.  It's fair to say it wasn't a surprise at all.

The day I was diagnosed was December 22nd and my Mum had flown in from Florida, where she lives, to spend Christmas with us.  That night as I was going to bed, after talking it all through, my Mum actually said to me that I needed to take this "more seriously" as it is in my nature to joke (I guess it is a coping mechanism).  Well, I have moved on from the jokes and now I am ANGRY!

Even though I had my suspicions I was also hoping it would be something like a trapped nerve or something that could be "fixed".  MS can't be "fixed" and each day seems to bring a new sensation and I am getting pissed off at the body that I have exercised and  looked after most of the time (with the odd burger and bottle of wine thrown in for good measure) for betraying me.

I lay in my bed at night feeling awful and I picture my brain, wondering what is going on in there?  Is more damage being done or are these symptoms a result of the lesions already there?

I am usually quite a happy person and I feel like I am turning into a grumpy, moody, weepy, pathetic person.  How annoying I must be to know right now.

I am also quite vain (which woman isn't?) so I wouldn't dream of leaving the house without my full face of make-up (including lashings of the very best under-eye concealer to hide these dark circles) so I LOOK alright to everyone, which of course is the goal when applying the cosmetics.  Then I get MAD that they can't tell how ill I feel.

I feel myself feeling frustration towards well meaning friends who tell me that it could be worse or how they know someone with MS that is doing great.  I KNOW this is coming from a loving place to make me feel better and I would probably say exactly the same thing to someone if the situation was reversed.  I want to say that I am NOT your Auntie Mabel and the reason that MS is referred to as the snowflake disease is that no two patients are the same and will experience their MS in a different way.

Of course, this is what I want to say but I wouldn't because at least these friends and family have offered support and said something. I am so thankful for each of my lovely friends and family who have offered support, listen to me moan about my symptoms (usually for the 100th time) and have never once made me feel like I am putting on them.

The people that have hurt (and angered) me the most are the ones that have said nothing at all but then I guess at times like this you discover who you can really lean on and who really cares.

I know that anger is part of the grieving process and as an ex-counsellor I know that when a person is diagnosed with a chronic illness they may go through all sorts of emotions of grief including denial, anger, depression and finally (hopefully) acceptance.

I am in the angry bird phase right now so I apologise in advance if I am a snappy cow-bag.  I hope I don't offend or push you away along the way. I really don't mean to be such a drag.

So, enough about me - how are YOU?

Commencement

by Robert of The Gifts of MS

I went outside this afternoon, to enjoy the finally warm Southern California weather. And I'm enjoying the air, and the sunlight, and the smell of the trees... and I look at the bits of Backyard Project that are undone thanks to not my usual lassitude, but to the ravages of The Disease. A workbench I used to use a lot... but don't any more. Potted plants that I used to care for more assiduously, but don't any more. Sometimes because even walking up to them is difficult, sometimes because standing and dealing with them is difficult, sometimes because both are too difficult; sometimes because standing and dealing with them is (maybe) dangerous or (usually) just plain non-doable.

For all of us, there are Things that were once part of our lives, but are no longer. Things whose time has come and gone. Some of those Things, we left behind because we had no choice—we would have hung with them longer, if we could, but that possibility simply didn't exist (for example, the college we left because we at long last graduated from it, and once you do that, you're outta there). Some Things we left behind because their time had come, and we knew it; and depending on our relationship with them, letting them go was bitter yet sweet, or Not! Soon! Enough!!!

And there are the Things that we would have loved to keep a relationship with. But the Things themselves decided that the time was up. Or, in our case, the whatever-it-was that brought The Disease to us decided that it was time for us to travel a different road; a road without those Things.

Now, what is it exactly, that makes the letting go of some of those Things easy, and some difficult? The Buddhists would call it "attachment," but even if that term explains it correctly, it doesn't really speak to the way those Things are hooked into the depths of our being.

I hated my college for the first two years, I loved it with an amazing love the final two years. I hung around for three years after I graduated from the college (two of those years in the master's program). But eventually, even I had to agree that the time had come for Something New. That it was time to let those Things go, beloved as they had been. And really, many of them, the part and parcel of the Undergraduate Experience, were already gone. They had departed when my diploma was signed, and delivered to me on the day of Commencement. And interesting choice of words, that... not an ending, but a beginning.

And here I am, surrounded by Things whose time—for the moment, at least—has come. And I am facing a barrage of "Commencements." In so many ways... even in the once simple tasks of standing up in the backyard, walking across the back yard. The ways I used to do those little Things... those trivial, quotidian, almost unnoticeable because of their simplicity, Things... for now, at least, they're gone.

Somehow, "commencements" were easier to take when you knew they were coming for years. When you worked your ass off to achieve them. I'm sure there are some who might say that I actually did work my ass off to position myself to travel the M.S. Highway (and I don't mean with regard to the huge amount of weight I've lost) in some sort of mystical, non-immunological/neurological way; that I chose these "commencements" for myself; as Marley's ghost told Scrooge, that I forged this chain link by link and girded it on of my own choosing.

So these are among the gifts of M.S.: Commencements. Delivered daily. Sometimes even hourly.

The past is over. Time to begin the new. The past created precisely what is necessary to deal with the present. We couldn't deal with the present if we hadn't lived through the past.

Which means that the greatest gift that M.S. gives us is the ability to deal with the M.S. Highway.

But oh, the past... the wonderful, wonderful past. Was it really that wonderful? I certainly like to think so...

But as a very wise friend once said, there are many paths to enlightenment; but nostalgia is not one of them.

A Small Stone: Jan 14, 2012
by Laura of Shine the Divine

A small stone: A steel-mixing bowl rings cheerfully as a handful of green peppers meet its surface; animal awareness perceives vegetable and mineral interaction as the ethereal sound of a singing bowl infusing the kitchen with good vibrations.

A pocket full of pebbles: This weekend we celebrate the remarkable devotion and sacrifice of Dr. Martin Luther King Jr. and the many brave souls who also risked and gave their lives rallying around him. This Shabbat, we begin the book of Shemot, Exodus; an ancient journey to freedom that replays over and over again throughout time for nations, for individuals unfolding in unique ways. For me, freedom is not so heroic, but significant nonetheless for my beloveds and me.

Freedom tastes like vegetarian chili simmering on the stove. Vegetables chopped with my two hands, peppers, tomatoes, onions, garlic, cilantro, beans rinsed, cumin and cocoa sprinkled, lime squeezed--slowly...oh so slowly, not only because it is the speed at which I am able to attend to my work, but because this is how I know I am alive, this is how I honor the preciousness of the gift it is as a mother, strength and endurance improving, to prepare a meal for my family. A task that I’ve not been able to do completely from start to finish while standing and all at once without resting in between for four years. Freedom tastes like gratitude. Freedom tastes like love.

Un-tethered...this is the sensation I am experiencing. Released from my computer, my primary connection to the world beyond my windows and backyard for nearly four years. Freedom, I taste freedom as I putter about the house. Each day I MOVE away from the keyboard and 11inch screen to discover, recover, remember what I lived before, what it is to be a human doing, not just a human being. It is the reverse of what many long for, so many people tired of going, going, doing, doing, tied tight to the world beyond windows, yet for me this is a deep, deep blessing.  The key will be to find the balance between the two—being while doing. I’m only human after all.

I am not the way I was, will likely never completely regain what has been lost, unless someday a brilliant scientist or team learns how to regenerate damaged myelin, still, I am grateful for the strength that has been renewed at this time and continues to increase daily.  Baruch HaEchad. Blessed is the One.

“All progress is precarious, and the solution of one problem brings us face to face with another problem.” ~Dr. Martin Luther King, Jr.

And my thoughts return to balance. I miss being online, visiting my blogging friends who have become so dear to me. I must find a creative solution to balance my time on and offline; a tiny problem as problems go, no comparison to the challenges Dr. King was referring to, but still one I must face. These friendships are real and I do not want to cause more isolation in my life, forget about the kindness and support I have experienced from so many beautiful souls around the world. I don’t want YOU to feel that I have forgotten you or that I don’t care about your wellbeing, because I haven’t and I do. Where there is love, there is always a way…I will find it or it will find me, I have complete faith that this is true.

Well this pocket full of pebbles has grown into a cairn, fitting really, marking great achievements and small, gratitude, friendship, blessings and love.


This concludes the 106th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on February 2, 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, January 31, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #102

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

Thanksgiving, Gratitude, and Faith

Reflecting on Abundant Beauty

by LauraX of Shine the Divine

It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.

Loved Ones

by Judy of Peace Be With You

A loved one’s presence

provides prized companionship

and valued support.

Buoyed by precious love,

one’s spirit takes flight and soars

past stressful moments.

Though hard times exist,

a sense of kinship prevails.

One is not alone.

Wait a Minute

by Mary of Travelogue for the Universe

Wait a minute,

just a slice of time,

does it look like a pickle slice?

Wait a minute,

catch your breath,

can you hold it,

in your hands?

Wait a minute,

did you ever hear,

"Wait a minute,"

and it really meant to

"stop?"

Wait a minute,

60 seconds,

how far does Earth travel

in that time?

Wait a minute,

adult time out,

wait a sec is

another way to say,

Wait a minute,

or a second,

take a moment,

for a change.

Our circumstances have nothing to do with our happiness

by Michael from Perspective Is Everything

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

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

A Problem of Faith
by Kim of Doc, It Hurts When I Do This...

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.


Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.


The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.


When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.


The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.


The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?


This concludes the 102nd edition of the Carnival.  Thank you for making this such a wonderful community online.

The next Carnival of MS Bloggers will be hosted here on December 8, 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, December 6, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #93

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

Humility and Grief, Neuro Ourselves

A River of Stones, July 13

by Laura of Shine the Divine

Small Stone:
Some mornings it seems the tub is filled with an equal measure of clear water and tears. They trickle down my cheeks becoming one with the bath as I imagine a former joy that is now impossible. I see myself stepping out, drying off, dressing (that I can currently do) and taking a walk through the quiet neighborhood before anyone else is awake; wheelchair and assistance free.

More pebbles in the river of my mind:
The loss of independence seems unbearable at times. Asking my daughters to push me up and down the hills of our neighborhood in my wheelchair feels like begging. It is hot. They don’t want to get up early while it is cool. They are teenagers. My belly aches, my jaw tightens, as embarrassment seeps into the hole where pride struggles to stay planted. I weep into the water, knowing that I must ask for help to go outside in the oppressive summer heat if I want fresh air (not that it is any different in the cooler months, I still can’t manage the chair by myself on the hills).

Then I contemplate all those in the world whose suffering is far greater than mine will ever be. A flicker of shame is sparked briefly, until compassion pours into the craggy spaces tangled with conflicting thoughts and emotions, nourishing the roots of dignity grafted to pride, transforming self-pity to acceptance, opening to lovingkindness for all beings.

You think you are done grieving, until a new wave washes over you. So it is, so it is. I meet the sadness with a gentle hug, arms wrapped around legs, hands resting on opposite shoulders, forehead on knees, grateful I can still bend into this posture of humility. This flexibility that still remains is a gift, I know. I am grateful.

The Accidental Expert

by Judy of Peace Be With You

Unexpected task
having to research and find
my own solutions.

Some will remind me
I did not attend med school
and am no expert.

Here is the problem.
Experts themselves lack answers.
Whom do I turn to?

The Neuro Visit That Almost Wasn't

by TickledPink at Gilenya and Me

With all of the other medical issues going on I decided to take advantage of the fact that my Medically Needy Share of Cost had been met and try to get an appointment with my new neuro, Dr. Silliman, at Shands Jacksonville Neurology Department. He had been the lead investigator in my TRANSFORMS clinical trial and was very familiar with me.

I didn't have a neuro outside the study (long story; last neuro had a stroke) and I had sort of been leaning on the trial to do all the neuro-esque stuff to me and catch anything that needed catching. In the trial I was poked and prodded and tested to the brink of insanity every three months.

It had now been 5 months since the study completed on Jan. 20, 2011.

So I called a couple weeks ago and got the person in charge of scheduling. She says "can you come at 3:20pm on June 23rd? It's the ONLY appointment he's got left for this month." And my answer is "of COURSE I'll be there! Put me down for it."

So I plan my trip accordingly. It's a 1.5 - 2 hr. drive to get there depending on how you go (I take the long scenic SLOW route as opposed to I-95 which scares me to death.) and I made sure to work in a planned stop to JoAnne's Fabric store so I could feed my new addiction - sewing clothes for my granddaughter. I also planned to stop for something to eat at Crispers which was on the way and has really tasty soups and sandwiches. (I had the Citrus Chicken Wrap <-- totally awesome!).

I spent the morning coloring my hair so I didn't have to wear my "Please don't feed the Skunk Woman" shirt, and I was out of the house right on time at 1:15.
================================================================
Geeze, I started this post quite a while ago (June 25th and it's now July 14th) and probably don't remember what all happened now to finish it. I need to stop starting stuff and not finishing it! I bet I'm ADD (but there I go on another tangent.... oo! a butterfly!.... what was I saying?)
================================================================
Anyhoo, to get to the point (was there one other than the main one about what I ate for lunch?) I get there and was signing in and they are looking at me all curious like from behind the counter. I notice the waiting room is empty. It's 3:15 in the afternoon. I ask which sheet is the one to sign in on for Dr. Silliman since there is a whole line of clipboards on the counter.

The ladies exchange glances that tell me they are bracing for the Angry Patient Response that they both know is coming. She asks for my name and tells me to come sit at the chair in front of her desk like letting me sit in the comfy chair will make what she's about to tell me all better.

I sit down and she starts clackity clacking on the keyboard doing stuff with that number pad over on the right that I never ever use. I hate when they do that because I can't figure out what they're up to. Then she stops suddenly and said, "You were bumped."

I say "Huh? Nobody told ME!"

She said "They didn't call you?"

"NO!"

"Is your contact phone blah blah blah?"

"YES! And I didn't get a call"

"Hmmmm" (long awkward pause).

Me: "Look, I just drove for 2 hours to get here and I'm not leaving until someone sees me. I was told this was his last slot for the month and my share of cost is met and it's the end of the month practically so I guess you need to find another neuro who can squeeze me in."

(she makes that "eeesh" face, upside down smile thing with open mouth that suggests that might not be too easy)

"See, he had his schedule cleared for this afternoon because graduation is today." (I keep forgetting it's  a teaching hospital).

"Yeah, well that's fine but it would have been nice to KNOW 2 hours ago before I wasted my day and thirty bucks in gas."

I sat down again (having stood up when I became irate) and said "I'll wait here until you get something figured out because I'm not leaving until I see a neuro."

She left and came back about 15 min later telling me Dr. Nameaslongasyourarm would see me and whisked me away down a maze of hallways that ended up looking awfully familiar. The spot I ended up in was one of the exam rooms over on the Research side where I always went during the trial. I was "home" and immediately felt comfortable.

I saw a guy in a white lab coat who seemed a little unsure of stuff I was telling him. I was guessing it was due to the fact that I'd been on Gilenya for nearly 4 years while it's only been approved since last September. I was thinking maybe the doctors who weren't involved in the study aren't as well versed in the stuff. Either that or they put a lab coat on the janitor and told him to wing it. Turns out the truth was somewhere in the middle. He was a resident. When he brought up my MRIs on the computer and had my initial one from the study side by side with the latest one from Jan 2011, I started asking questions he couldn't answer. Then he starts whapping me with that rubber mallet and when he hit my left knee I kicked him.

I didn't meant to kick him, but shouldn't a neuro who is examining an MS patient have sense enough to stand to the side when testing their reflexes?? He abruptly left the room. Wow. What a wuss. I only kicked him in the shin. It wasn't like I nailed him in the privates or something.

He returns with another guy in a lab coat who seems a whole heck of a lot more at ease with himself and confident. He shakes my hand and introduces himself as Dr. Somebodyelsewhosenameiforget. He takes the mallet from the first guy and gives me a whack. Immediately I could tell he knew what he was doing. He stood off to the side as my leg flew up as if to launch the winning field goal.

He turns to the janitor and says "You're right! Her reflexes ARE brisk!"

Then he taps me all over, watches me walk, and looks in my eyes. This is when he said "I see some optic pallor more prominent in the right eye than left."

Whoa! Back the truck up! I have never had an MS related issue with my eyes so the way he said it, like it should be no surprise, surprised me.

Of course I had to come home and google it. I'm not buying what he's selling though because none of the real eye exams by the neuro ophthalmologist ever revealed any issues whatsoever, so this guy with a pen light and no dilation drops isn't about to intimidate me. I don't care what he thinks he sees.

Speaking of what he saw, he also looked at my side by side MRI scans and got them to sync so that he could scroll through matching image slices like seeing my brain melt away from the top down and compare things. He stopped at one point to teach the janitor/resident about Black Holes. Apparently I have one. News to me.

A Black Hole is where MS has done so much damage that not only is all the myelin all gone but so are the axons it was meant to protect. Total nerve annihilation. He did say that it was so small I probably didn't even have any noticeable symptoms from it.

They did a blood draw after my prompting and a little researching on their smart phones once I mentioned that in the trial they did blood work every 3 months especially since there can be elevated liver enzymes. No mention of any eye exam, PFT or any other test that was so common place during the study.

I left there feeling a little less confident about my eyesight and my brain, but decided they may not know what they're talking about. I'll wait until I get to see the neuro I'd intended to see. I was told to make a 3 month follow up with him.

The day after my appointment I got a phone call. It was a courtesy call to let me know I was getting bumped... from my appointment the day before. Duh.

This concludes the 93rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 4, 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, August 2, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #34 - Expressions

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

"No words to express....."

Disintegrating
by Mon Voyage, Ma Chrysalide

dis-in-tə-grāt = To become reduced to components, fragments, or particles.

I have undoubtedly avoided writing about my Multiple Sclerosis for the past year. It makes me sad. I feel like writing about it makes it real and THAT makes me sad. Truthfully though, just living with it makes me sad. Not every day but often enough to be a thing I want to avoid. There are other things more putrid that I would rather do lately than discuss, talk or write about than what MS is doing to my body.

I need to start by stating that I felt compelled for the first time this year to fundraise for the MS Walk. Compelled because I began to feel a new sense of urgency I never felt before and it was brought on by a very upsetting new change in the landscape of my young body caused by…MS. First it was my left foot that started to look strange. Later it was confirmed by the Physical Therapist that I had atrophy of my left leg, ankle, foot and toes. Followed by a month ago, when I noticed after I got out of the shower that I had a massive dent in my upper thigh/hip area. I was informed that this is also an area of atrophy caused by MS.  

Informed. No one even attempted to soften the blow to my youthful and appropriate vanity. No, “I’m sorry, this is what MS does.” Just: “Yup, it’s the same as your foot.” So, god only knows if I will wake up tomorrow with another gap in my muscle on that leg. I hate MS.
There are no words to express how I feel about what MS is doing to my body. I have been struggling with another MS related change. My left foot no longer stays flat when I walk due to spasticity. I just tried out my custom fit AFO for the first time and although it needs some adjustments, it does help to keep my foot flat. The problem I have with it is that it makes wearing shoes impossible. Will I ever wear the thing? Probably not. It’s bulky, and due to my Dysautonomia I can’t walk that far anyway.

It is difficult to explain to people what it’s like to be almost 34 years old and not be able to walk with a normal gait, if at all. Or to be steadily losing your vision. Or to watch your young body be slowly disfigured by a disease you can’t understand and you can barely even pronounce.

I try to stay positive and most of the time, I am told by people that I am positive but somedays the effects of this disease on my life and body are hard to ignore. I truly hope in my lifetime they find a cure or something close to it.

I have been torn lately about how to confront my MS and I have some important choices to make this week. I have been off Tysabri since July 2008, taking my time to choose which disease modifying drug to go on. I realize I have taken too long because I have had a few small flare ups. I am thankful they have been nothing serious. Next week I see my Neurologist and I may choose Avonex. I am apprehensive about it because I had a bad reaction to Betaseron and they are so similar. I wish there was a better answer to treatment.
Time to choose…

MS'er Faith says
Here's to you...

This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.

A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.

So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.

This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.

Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!

Lazy Julie is Whining my way to a grateful heart...

Instead of sharing how I worked my way through my process to get to a place of humor, perspective, and gratitude, I thought I would share the mucky part before that and see if it makes me feel any better.

I am at the MS Center getting my monthly solumedrol drip, except I had to wait a half hour after the start of my appointment since I missed my March appointment. I am being punished for my non-compliance even though I am here which means I am trying to be compliant. Too late. I'm in the slot and there I will stay.

My feet are still numb and cold and even though I left a message for the neurologist yesterday, I have yet to receive a call back. And even though I am actually present in her office, she has yet to come by to see me and respond to my message about the numb feet. More punishment? I'll show her. She misses the solumedrol and her feet get numb, let her suffer because she deserves it. She brought it on herself.

I am alone. Lots of people are here alone but there are also people who have loved ones with them. It's probably 75% alone and 25% with people. So why I comparing myself to the minority and feeling bad?

The woman who is getting an infusion in the next pot just went to the bathroom. Her husband lifted her from the recliner into her wheelchair and then took her into the bathroom. I'm assuming he had to pull down her pants, put her on the toilet and either empty her cath bag (is there such a thing) or wipe her after she went to the bathroom. Who, exactly, would do that for me? Not that I want to be in a position to be having ANYONE take me to the bathroom but, God forbid, who will take me?

I am feeling like I have no loved ones that love me THAT MUCH. I am filled with self-pity and devoid of all gratitude. I am missing my dad and started crying when the nurse asked me why I missed the March appointment. I am missing that he was a person related to me who gave a shit and who I could count on no matter what. He would never let me be homeless. But I am not homeless. I have a job and a home and a refrigerator full of food.

I am missing Ken, too, not just as my boyfriend but HIM in particular. I am missing his eyes and his voice and his kindness and his hands and his love and his body. I'm not sure why I am missing him here and now. He never came to solmedrol drip appointments with me at this place. He probably would have tried to come if I asked but he never, ever would have offered on his own. Maybe I'm missing who I wish he could have been for me. In our relationship, he gave me a lot but he could not or didn't want to give me his whole self and his whole heart as a life partner. I am missing what he NEVER could give me. But then again, I hate when people feel sorry for me and cling to my independence at all costs so why am I craving that kind of support?

I am tired and want to fall asleep but I'm supposed to be working which I'm not doing anyway, so I should probably stop whining and either do some work or shut my eyes. I keep switching screens from this one to work email and feeling resentful about that.

I am, in short, not in a good place. I am sad, mad, scared, and, generally pathetic. I know that this too will pass. I know that because I am sharing my feelings, they will be halved I will get relief from the poison in my brain.

A woman just came in with a three-month old baby and I feel better looking at his peaceful face asleep in the stroller. Thank God.

I am not asking for help and I should be. I just closed my eyes and asked but I was not hit by a bolt of spiritual lightning.


This concludes the 34th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 7, 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, May 5, 2009.

Thank you.

Comments for this post.