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

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

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

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

Sincerely,
Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones

Labels

Showing posts with label Gratitude. Show all posts
Showing posts with label Gratitude. Show all posts

Thursday, March 14, 2013

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.

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.

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.


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.

Thursday, November 22, 2012

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

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.

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" accessible. 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.

Thursday, January 19, 2012

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

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.


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?


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.

Thursday, November 24, 2011

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

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.


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.


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.


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.

Thursday, July 21, 2011

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

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.


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?


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.

Thursday, January 20, 2011

Carnival of MS Bloggers #80

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

Perspective, Healthcare Policy, and Friendships

by Jenna of Me, My MS and I

I’ve come across many instances of describing people with MS as ‘MS sufferers’ recently. Everyone prefers their own terms, as it were, or none at all. It thoroughly annoys me that others take it upon themselves to decide I’m a ‘sufferer’ and to describe me as such. I’m not planning on being up for martyrdom, so no ‘suffering’ with quiet dignity for me, thanks! I plan to grow old disgracefully and have a whale of a time doing it!! I’m a person that happens to have MS (and it’s *my* MS thank you very much, so hands off with the descriptions and names!!), not MS that just happens to have a person attached. We’re people, not a condition. Consider the mental health campaign slogan: see me, not a label.

I prefer to have a riotous time during the good times and enjoy them thoroughly, and although the bad times aren’t great, I decided to kick my MS in the arse and fight it every step of the way (even if it means throwing sand in its eyes!), as opposed to ‘suffering.’ Suffering implies a passivity that no MSers whom I know subscribe to. We’re all fab, super folk who are determined and stubborn and fight our MS every step of the way. These are our bodies, it’s our MS, and we decide how we describe ourselves.

Perhaps some people with MS don’t mind at all being described as a ‘sufferer’ and that’s their choice which they make and are happy with. Everyone is entitled to their own opinion, but before the next time you decide to call someone with MS a ‘sufferer,’ consider if you have the right to – are we really ‘sufferers’ and what gives you the right to decide if we are?


from Diane J Standiford of A Stellarlife

It always amazes me how well you handle your multiple sclerosis. Oh, sure, you may have cried, been freaked out, asked, "WHY ME?" but after the smoke cleared, you started living with MS on your own terms.

You started a blog. You wrote your feelings and struggles about your new life, sharing with the world very private observations and fears. Then you read other blogs and bonded with strangers who lifted your spirits because you found you were not alone with MS. Strangers became friends and daily visitors.

Your canes or walkers, scooters or wheelchairs, became pals. Pals you decorated, bought accessories for, heck, they became a part of the family! Courage grew in your very soul. Needles-peedles! You found you could inject yourself and eat better, exercise, find new doctors and learn new words. What was once a hideous burden, became a tedious inconvenience.

Most miraculously, you found laughter in the struggles of MS. Would you have found some of the bodily mishaps funny that now you do? Laughter is the best medicine and every day you use it you are certain to feel better. Laugh and the MS World laughs with you.

Most gallantly, you never stop looking for a cure, you fight for your health care rights, you challenge doctors and scientists to "step it up." From your walkers you call congress and organizations urging them to fight with you. Using your damaged brain you weed out MS scams, and plan ways to keep medical experts on your side.

So hats off to all of you! That hotel on Boardwalk is YOURS! And for those of you just diagnosed with MS? Well, very soon you too will live on YOUR own terms. Life is but a game, and we are just the players. Gather your family, friends and loved ones around the game board and remind yourself every day that life is short, so drop the "Get out of Jail Free" card and throw the dice!


from Michael Gerber of Perspective is Everything



from Stuff Sick People Have to Put Up With

Yes. You read that right. No, that’s not a typo or a mistake.

My medication alone is priced at between $2,089 and $2,563 per month.
I earn between $15,000 and $23,000 per year.

Obviously you can see the problem here. The total out-of-pocket cost of my medication alone exceeds my entire annual income by up to $16,000.

I often ask people: “What does ‘being sick’ mean to you?” I ask this question because I am curious as to how people will respond. Most of the time, people who do not have any kind of chronic illness can only conceive of “illness” in a few ways:

A. Short-term, minor illnesses, like colds, flus, and mild bacterial infections, that either go away untreated or go away with a relatively inexpensive antibiotic

B. Acute, catastrophic illnesses like cancer that can potentially bankrupt a person, but that are treatable and “curable” (for the most part) with, say, chemo.

and/or

C. Acute, catastrophic accidents that result in broken bones or other surgical needs—-again, can potentially bankrupt a person, but are “fixable.”

From what I’ve seen, unless someone has direct personal experience with chronic illness (either themselves or an immediate family member), they really can’t conceive of it.

“Illness,” for the vast majority of the population, is transient. It’s temporary. It’s that nasty cold you have for 2 weeks that passes. At worst maybe a broken bone or cancer: but hey, with a surgery and a cast or some chemo, you’re set, right? Life goes on. You get “better.” You’re cured. Everything returns to normal.

I think the reason why a large segment of the population actually thinks it’s OK to deny health coverage to people is because they have zero direct experience with a chronic, incurable illness.

I’ve been sick for nearly four years. I am never getting better.

Let that sink in for a minute, if possible. I’ve been sick not for 4 days, or 4 weeks, or 4 months, but 4 years. I will never, ever get better.

It is difficult enough to get through each day, to work and be productive, to manage all of my responsibilities while constantly and unrelentingly sick, without also having to worry about stuff like: “Where on earth will I get an extra $30,000 to pay for my medication when my health insurance policy expires next summer?”

For those of us living with chronic illnesses, every single day is a struggle. I don’t talk about it much, but I am constantly in pain. I constantly feel sick. I remember, before I got MS, how I used to wake up and it was just a question of: “Do I feel sick or well today?” Most days, of course, a person feels well. Then you go about your business and don’t even think about your body, really.

For almost four years the question I’ve asked myself upon waking has not been: “Do I feel sick or well today?” but rather: “How sick do I feel today?”

There is no more “feeling well.” I will never again “feel well.” There will be days when I feel less sick or more sick, but there is no more “well.” It doesn’t exist.

I can live with this illness, and what it’s doing to me physically, and what it will continue to do. I understand that I probably won’t be able to walk within 5-10 years. It’s OK with me that I already have lots of permanent neurological damage. I can bear it. The pain, I can handle it.

What I can’t handle is, on top of everything else, not knowing how I will get health care, or afford a health insurance policy, or afford a medication that costs more than my entire annual salary. I think until you’ve lived with that kind of situation or witnessed it firsthand, it’s fairly easy to dismiss the needs of people who really do need health care. It’s fairly easy to be callous, because your only point of reference for “illness” is perhaps a cold, or the flu.

This is universes away from the cold or a flu.

The illness I can bear. Not having access to health care and medication, I cannot bear. I really can’t. Please don’t ask me to.


from Matt's Multiple Sclerosis Blog

PhotobucketI have always been one to keep a few close friends in my life rather then surround myself in a huge social crowd. It's been hard for me lately not because MS has destroyed my friendships but because MS has allowed me to see people more clearly, to see them for who they really are, to “see their true colors” and unfortunately, I have not liked what I have seen so far... This has led to several of my good friendships falling apart.

Every incident has been different in it's own ways but fundamentally, when you break each situation down, all my friendships have ended for the same basic reason. I have been let down in some way shape or form as a friend. I have always gone above and beyond for my close friends, the people I care about, and the people I love. I have always put them all before myself, and truly tried to be there for them how ever I could. I slowly began to realize in the last few months that none of my friends were really willing to do the same for me. I'm not going to bring up any particular incidents because I am not trying to put anyone on the spot or bring my personal affairs into the matter but I can truly say that I have busted my ass for several of my friends who in return couldn't even show a little effort in trying to be there for me.

I try my best not to hold grudges but sometimes resentment is hard to shed, sometimes it's hard to forget the past and not be bitter. I don't let it anger me anymore because that is a waste of my emotional resources but to be bitter doesn't really take a toll on my emotional well being. Though I guess you could argue that this has caused me to grow cold and I know it, I can feel it, but I can't help it. Why should I care for those who have proven to not truly care for me? For those who have found it so easy to just walk away?

I have just a couple true friends left who I know are genuine but at this point I feel no desire to reconstruct old friendships because I don't know if I believe that people ever really change. It would take a lot for someone to prove to me they have changed, that they want to truly be my friend, but at this point, “sorry” won't do. “Sorry” has lost all it's value to me. Anyone can say it but not everyone can mean it let alone prove that they mean it.

When writing on my blog I try my best to maintain a positive attitude but I can't hide the fact that at this point in my life, I have a very grim view of humanity and it's not because of my MS. MS might have aided some of my negative views on humanity but for the most part it's my life experiences and social experiences that have lead me to think the way I think and feel the way I feel. Knowledge is power but knowledge can also be a painful burden. Maybe I have just yet to mature enough to know how to properly process and handle the knowledge I have obtained, I don't know, I just know that I am growing cold and calloused and I have no idea what it will take to change that or how long it will take for that to happen.

“Ignorance is Bliss”

A true statement indeed, but ignorance is just the path of least resistance, the easy way out, and knowing myself and my pride, I know that I can't take that route in life. I'll eventually have to learn to deal with knowledge, reality, the world, humanity, people, all of it. I'm not taking the easy way out, I will endure and I will overcome.


This concludes the 80th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 3, 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, February 1, 2011.

Thank you.

Comments for this post.

Thursday, December 3, 2009

Carnival of MS Bloggers #50

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


Newly-diagnosed Copaxone user Sarah says I Hit a Vein Today and....

It HURT!!!

Really bad.

It was in my left thigh, I fired and everything was fine. I waited my 10 seconds as the Copaxone slowly transfered from the syringe into my body and when I pulled the Autoject away, I almost passsed out.

BLOOD!

LOTS OF IT!

At the very moment I saw it I thought, "Ugh, that's not good". I cleaned it up and luckily it stopped bleeding pretty quickly. I sat on the side of the tub for a moment and took a look at my new word art, For My Life! "Yes, it is" I thought.
I cleaned up the 'scene', applied an ice pack, and went into the living room and sat next to the hubs. He asked, "What's wrong?" and I just shook my head, "Nothing". Clearly lying.
I knew the veins hurt like hell. Lesson learned. Mark the 'shot spot' before applying heat so I can actually see what I'm doing.
~~~~~~~~~~~~~~~~~~~~

by Judy of Peace Be With You


If I get weepy,
It’s usually because
I miss who I was.

I know I’m still me,
But my new garment sometimes
Does not fit too well.

I am mostly brave.
I smile through a lot that pains.
Aren’t I just like you?


by Judy of Peace Be With You


I sometimes forget
how impaired MS makes me.
I think I'm normal.

Looking at others
buying groceries with ease
reminds me I'm not.

I must remember
what it’s like to feel healthy
so my brain does too.


by Judy of Peace Be With You


Graceful is someone
who accepts life’s ups and downs
with cheerful aplomb.

I am sometimes good.
I scale the rocks and ridges
without falling down.

But frequently
I stumble into the ditch.
I must start over.

~~~~~~~~~~~~~~~~~~~~


Broken Tailed Traveler

How can I respond to the kind things you have all said to me in comments here on this blog and privately through email, except to say that I am grateful that this wasn't about me? I say this with anavah (humility) in my fullest understanding of the word. I was taught through the study of middot (soul traits) that this word (at least in Hebrew) does not mean humble as in lowly, but instead it means knowing when to step forward and take ownership and recognizing when to step back and allow others to shine. Perhaps in this instance we have all stepped forward in unity, illuminating the world with our shared awareness of the blessings we have received, despite or even because of our brokenness, with full acceptance of joy, much like this broken-tailed butterfly appreciating the fragrant orange flowers upon which it is feasting. I may have had a seed of an idea that became the first stitch in this quilt but it grew from the wisdom of many individuals collaborating. For this word quilt is truly an ode to all of us who participated in creating community here in the blogosphere as well as the travelers who have stopped by to witness our gratitude and in turn have become part of this comforting blanket; a community of humanity far and wide. This whole experience has been an unfolding, blossoming, opening, song of souls, blessing life; each of our unique voices joining in to create a harmony that is complicated, textured, rich and sweet. Indeed a choir of love that I hope will continue to reverberate in our hearts for a very long time.

As you can probably tell by my improved vocabulary, the steroids are beginning to heal the swelling in my brain. Over the past two weeks I have traveled to many lands much like this blog entry, at least if you had heard the changing accents through which my brain has conveyed the English language through my voice, it would appear that I was quite the world traveler. It has been a fascinating journey for my family. Every morning I start the day sounding completely different from the day before. Even inside my mind I hear whatever voice will follow before I open my mouth to talk…certainly a clue of some kind to an aspect of the process of speech formation. When this all started two weeks ago, my pitch was higher, my English was halting and kind of “broken”. I could easily have been mistaken for a recent Chinese immigrant, just learning my own mother tongue, American English. Then my syntax would be confused and I sounded somewhat like Yoda from Star Wars. At other moments my r’s were completely gone as were unessential words like “a” and “the”; s’s were not present to indicate plurality. Then I would go back and forth from this more toddler like formation in speech to a slightly southern sounding voice, a lilt to my voice as though I were from Georgia or South Carolina. Yesterday my pronunciation shifted so that I sounded like I was from somewhere in Northern Europe; an undisclosed country, but certainly not the Philadelphia accent I grew up with. Today the morning began with toddler speak and difficulty retrieving words but then for most of the day it has been a combination Irish brogue with a slightly Canadian flavor. Late this afternoon, around 3:30 or so, my normal voice, with proper syntax and most of my vocabulary returned. I did go back to Irish for a wee bit this evening and then found my natural voice again. Why this fluctuation and world travel is happening in my brain is a marvel; a mystery of misfiring neurons altering my speech patterns, I suppose. It has been a “long strange trip” (to quote the Grateful Dead) to be sure. It is as though I am an actor or perhaps channeling the voice of another being, and yet beneath all of this lies my “witness consciousness”; my own thoughts below the surface sometimes accessible through language and at other times just “watching”, unable to fully communicate all that I wish to convey. And so admittedly there is frustration, especially when I can’t remember the precise word I want or when I sound more like Elmer Fudd than a 44 year old woman…but my curiosity about this bizarre phenomenon has allowed me to once again discover the blessing through the humor of this situation. Yes this time around it is the gift of laughter at the surprising nature of MS that is sustaining my family and me. My eldest daughter is sorely missing my brogue this evening. This was her hands-down favorite. I must say we all enjoyed a moment the other night when I exclaimed while viewing a movie: “This is weally, weally, cweepy!”

Who knew I’d feel a loss as my completely uncontrollable speech patterns began to disappear?! But tonight as I’m writing this, even I’m a little bummed out that I just sound like ordinary me again. And to think, when this all started I cried! I don’t know how I’ll sound tomorrow morning, of course…the hour is late, before I know it day will break and a new adventure will be revealed.


This concludes the 50th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 17, 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, December 15, 2009.

Thank you.
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