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

Thursday, September 24, 2009

Carnival of MS Bloggers #45

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

Inspiration, Humor, Good News, and Immortality

MS: What Will the Neighbors Think? 
by Jen of MS Strength

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and Bill and I had both lost our jobs— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!


Ah, the humor of our MS Bloggers. It pleases the soul and lifts the spirit. Sometimes it even causes bursts of laughter.

Joan caused such a reaction recently with her very simple post...

One photo.

One title.

One cute chick.

Joan of A Short in the Cord says,

"I Guess They Saw Me Coming!"





High School Reunion and Tysabri 
by Maryann and Montana

I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.

Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.

The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.


Embracing Mortality, Living Immortal.... 
by Linda of Brain Cheese

I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.

It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.

On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.

Over the course of the next 24 hours, I developed what my mother thought was the stomach flu...in 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.

The next day, I was allowed to stay home from school because my temperature "didn't feel right"...in the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.

By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.

I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.

When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now"...it was so strange receiving such a gentle caress from a stranger.

I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.

*******

At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.

I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.

The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.

Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.

These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.

As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.

I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...


This concludes the 45th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 8, 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, October 6, 2009.

Thank you.
Comments for this post.

Thursday, September 10, 2009

Carnival of MS Bloggers #44

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

Please complete this survey before September 14, 2009. Thanks.


HOPE

A special story shared today by Judy who blogs at Peace Be With You.

Hope got up that morning and breathed in the sunshine air. That’s what she called it—sunshine air, that quality of air which shines brightly and thrills with promise, of shadows remaining distant, of strength staying resolute. So she breathed in the sunshine air and thought, Oh, my, this is the day that the Lord has made. Let me rejoice.

She was heading to the kitchen to prepare her morning toast when she tripped over a—what did she trip over? She looked down, but the tile floor was as smooth as ever, no stray objects around her that she could see. Must have been daydreaming already, she thought. I’d better get my act together so I can go out and enjoy this sunshine air.

The first thing she did when she walked into her blue-and-white kitchen—hey, weren’t those hand-painted, blue willow plates on the walls just great?—was to pull open the French doors to the patio. She stood at the threshold, her hands propped high above her on either side of the door jamb, and breathed in deeply. Jasmine, even a hint of morning dew, filled her lungs. Promise, that’s what this day reminds me of, she thought. Of how a day is always the beginning of the rest of your life.

She walked back into her kitchen, pulled out two slices of oatmeal bran bread and the jar of mango preserves bought the day before at Morning Glory Farms. After putting the bread in the toaster, she turned the lid of the jar to open it. Except it wouldn’t open.

“Drats. I should have bought that jar opener I saw at the store yesterday.”

It had seemed like such an unnecessary thing to do at the time. $13.99 might not seem like a lot to others, but she had decided to save every penny she could toward a vacation hiking up the Costa Rican mountains with other members of the Audubon Society, and $13.99 was 1,399 pennies.

She tried again to open the jar. The lid wouldn’t move. Her hand kept giving out at the wrist, as if it lacked strength. Hearing the sound of rustling leaves coming through the patio door, she remembered—this is a day of sunshine air. Then she reached into her pantry for the strawberry jam she usually used except on days like today when promise seemed especially worth celebrating.

That’s okay, she thought. Strawberry jam is good enough to celebrate sunshine air. Anyway, it also came from Morning Glory Farms, and everything they produced was a miracle.

She went to place the jar on the counter, but missed the edge. The jar dropped to the floor, red jam spilling onto her white tile and splattering her cabinet doors, shards of glass everywhere. After gazing at the broken jar on the floor for long moments, she leaned over to pick it up, but lost her balance and landed on her hip on the hard floor. In the stunned moment after landing, she thought, what just happened? Then she quickly examined her arms and legs for cuts. Somehow, miraculously, she had fallen where there was no glass. Only a bit of jam stuck to the hem of her short, frilly nightgown.

“See, I told you,” she said, using her elbow to get off the ground. “This is a day of promise.”

After wiping clean the mess on the floor and cabinet doors, she picked up the edge of her nightgown, and rinsed the jam off. Her toaster had long since rung to tell her the toast was ready so she threw out the hardened slices, dropped two more in, and went looking for something to spread on her toast.

Butter, isn’t that what most people put on toast? But did she even have butter? She never used ordinary butter, not even for cooking. One thing she had always been proud of was how she ate right, exercised, and kept a good attitude.

She opened the refrigerator door.

No butter.

The toaster rang.

She gazed at the toaster, heard the leaves rustling behind her, and sighed. Then she squared her shoulders and reached for her toast. She slid the slices onto a plate and strode to her outdoor patio table. There she sat, breathing in the sunshine air and smiling before she bit into her dry toast. That’s when she noticed the pamphlet on the adjoining chair. She thought she had thrown it out the night before, but apparently not.

The designer who laid out the pamphlet’s artwork must have been a cheerful sort—or not knowledgeable or smug or superior or something—because he chose uplifting colors. Hope stared at the pamphlet until she remembered her toast was now growing cold. She bit into the dry toast. The crisp edges seemed to scrape across the delicate upper skin of her mouth. Her skin in general seemed awfully sensitive these days, and she reflected on how skin was supposedly the largest organ of the body, which meant she was just one big sensitive organ.

She lay the toast back on her plate. I probably should use paper plates from now on, she thought. Less risk if I drop them. From the patio, she scanned the blue-willow plates she herself had hung in her kitchen. It didn’t seem likely she could add another, not just because of the money but because she’d better donate her ladder to someone who could actually climb it.

She picked up the pamphlet from the adjoining chair, gazed at its aqua and apricot tones and thought, the designer should have made sure the pamphlet’s contents were equally uplifting. Or were the pastel tones intended to take the edge off the life sentence contained within? Is that what Hope had to do now—paint her life in pastels?

She had always hated pastels. It was the primary color spectrum of a tropical jungle or the honesty of Delft blue china she always preferred. She laid the pamphlet down and picked up her toast.

Stay with the program, Hope. Stay with the program. Remember, this is a day of promise.

A ray of light filtered through the Japanese maple usually shading her patio. It lit up Hope’s face and she lifted it to let the sunshine warm her. A breeze picked up the pamphlet in pastel colors, and it fell to the flagstone terrace.

Alerted by the sound, Hope watched as the pages fluttered. Then the pamphlet closed on itself. Living with MS, the teal-colored title said.

Saving 1399 pennies was not going to make a hiking vacation in the Costa Rican mountains possible, was it?

Hope swept up her plate, most of the toast still uneaten, and headed for the kitchen door. There, head bowed, she stopped momentarily before turning to look at the patio again. The sun is still strong, she thought as she lifted her face to warm it. The plate in her hand dropped to the flagstone and shattered.


This concludes the 44th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 24, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 22, 2009.

Thank you.
Comments for this post.

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