Carnival of MS Bloggers #162

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

Suffering Disappears, Love Remains

by Meagan at Multiple Sclerosis, Motherhood, and other Traumatic Experiences

Do you ever have days when you feel like it has all become too overwhelming?

My grandparents, both in uniform during WWII

My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?

This is a true story.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.

My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA

Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.

Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.

This beautiful love story began to take a turn.

My grandparents on their wedding day, 1945

That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.

Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.

My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.

My grandmother, mother, and aunt/uncles: 1960s

Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.

Here is the beautiful part of the story.

My grandmother with her caregiver

My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.

The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.

My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.

My grandparents...1980s

The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. 

On their grave is the quote "Suffering Disappears, Love Remains."

When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what is? Love.

My grandmother with Louis Armstrong, 1950s

With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I can and I will. 

When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.

MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.

Despite everything we endure in life, it is still "A Wonderful World," isn't it?

Please Join Me at iConquerMS™

by Lisa Emrich at Brass and Ivory

This concludes the 162nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. 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 2, 2014.

Comments for this post.

Carnival of MS Bloggers #160

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

I Hate Good Enough

by Lisa Emrich

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.


This concludes the 160th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 6, 2014. 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, November 4, 2014.

Comments for this post.

Carnival of MS Bloggers #155

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

I'm Sorry...

by Lori at A Girl from MS and A Boy with MS

I'm sorry is a phrase that is either really easy to say or really hard to say. Sometimes it is used lightly, and sometimes it is used in some pretty intense situations. In marriage and really in life in general, the art of saying I'm sorry and what it means is actually really complex.

The first words Josh said to me after his diagnosis were "I'm Sorry." I am pretty sure I looked at Josh like he was an idiot. Why was he apologizing? Who says they are sorry for being sick? Are you kidding me? Being diagnosed with MS is something that is totally out of a person's control. Thinking about it now, I'm sorry is a little bit ironic. The things I really need Josh to say I'm sorry for are things like...

• Sorry for leaving the toilet seat up, and the fact that you fall in the toilet at least once a week as a result of this.
• Sorry for never unpacking my bags after business trips.
• Sorry for falling asleep with a glass of red wine in my hand and waking up startled resulting in me drenching you with red wine at 3 in the morning. (True Story... Don't you feel sorry for me?)
• Sorry for being grouchy when I wake up.
• Sorry for leaving my work stuff scattered on the table.
• Sorry for leaving empty glasses on the nightstand.

Even after reading this list, the things I want him to say he is sorry for are pretty pathetic. They are such minor things in life. AND truthfully, I might miss some of these things if he ever quit doing them. Although, he is free to stop doing these things just so I can test out what it is like. :)

On the MS front...

The eye washout has not completely gone away. Josh needs a steroid for his eyes to knock out the inflammation. Dr. Emily called in IV Infusion that can be done at home. Sounds dramatic, but it really isn't-just more of an inconvenience. Josh does an incredible amount of paperwork for his job. Really, I may never understand the amount of paperwork that he does. The IV is being done at home which works out really well for him so he doesn't have to stop work. Just another perk of having a home office. He has to do 3 consecutive days of the steroid. We are hoping to get them started today and finish on Saturday. I laughed and told him maybe he will have a cute little nurse come out to set it up:). It amazes me how far technology and medicine has come. The fact that he can do this from home and it not have an impact on his work is truly amazing.

Back to the "I'm Sorry's"...

Our wedding was FUN. Like, so fun I didn't want to leave. In fact, when we left the reception the first time, no one was outside to see us leave. We had to do a redo and tell the band to stop playing music so everyone would come outside to see us hop in the limo to start our happily ever after. Our friends and family celebrated (maybe celebrated a little too much:), but the main part of our wedding was our vows. When I took those vows, I signed up for MS. I signed on the dotted line when I signed our marriage certificate. Did I know it at the time? No. When you are young and in love, you feel invincible. All you can imagine are picket fences, babies, puppies, and rainbows. (At least as a girl I imagined this. I would be interested to see what Josh imagined:) Would I do it all again and sign up for MS? Yep. And guess what? I. AM. NOT. SORRY. And guess what else? I will NEVER be sorry.

Marathon

by Lyla at Dear Diary

I have been a runner in my lifetime. Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion. In 1999 a friend talked me into doing a "fun run" with her. She had just had her third child and wanted to get back in shape. She had been very involved in track during her college days and was really quite good, and fast.

I said yes, and over the next five years I ran in several events including four marathons and three triathlons. In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease. My next marathon had begun. It took another six years of head scratching before the diagnosis came. Oddly welcome. Nice to know the reason why, right?

Some questions though, do not have answers that feel satisfactory. And then there is the whole thing about not knowing what the future holds. All there really is to plant my feet on is what is in front of me right now. I am more than ok with that. Distance running is kind of the same. Being in the moment, being with myself is a big part of what I would try to do during a long run.

Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care. Running shoes are optional.

Sneaky MS

by Cheri at I Tri not to Forget...

After transitioning to the autoimmune paleo and Wahls protocols, I definitely have had more good days than bad, as far as my MS fatigue. I have also learned to be more in tune with my energy levels, and therefore what I schedule for the week, making sure I rest if I need to, so I don't crash.

Having said all of that, there are days when I feel really good and I get caught up in the moment and push it too far. For example, last weekend, I started off my Saturday with a 1 hour vinyasa flow yoga class from yogaglo.com, then went for a walk with my daughter as she rode her scooter around our neighborhood and I ended up spending a couple hours in the afternoon out in my yard cleaning up the garden. I felt great and then it hit me, like somebody turned my switch to "off". I had just fixed dinner and then realized I was exhausted, and needed to lay down that minute. I basically ate dinner and went to bed and that was it for me. A couple months ago, I would have been down for the count the next day too, but I wasn't this time. I took it easy the next day, but I was still able to function, so I feel like I am making progress.

I believe that my body is slowly healing, and I am making peace with this new life, but sometimes this "MSness" can just sneak up on me...


This concludes the 155th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 5, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 3, 2014.

Comments for this post.

Photo Credit: Dawn - Pink Chick via Compfight cc

Carnival of MS Bloggers #152

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

Special Announcement:

Our blogger friend Judy Mercado of Peace on the Journey has published her inspiring and expressive haikus and poems in her new book Peace on the Journey: Poems which is available in paperback and Kindle editions.


Editorial Reviews

“For those struggling with chronic illness, loss of a loved one, or any major life challenge, the Peace on the Journey poems affirm that one can still choose to smile and resolutely renew life. In facing hardship honestly but tempering it with hope, these healing poems light a path out of despair.”

—Dr. Joan Barice

“In deceptively simple seventeen-syllable nuggets, these poems convey a complexity of emotion and perspective that quite often transcends the limits of language. They are nuggets of shared humanity that find their mark squarely in the heart and soul. Sometimes in whispers, sometimes in shouts, Judith Mercado’s words resonate with wisdom and truth, and grace the reader with intimacy, honesty and understanding.”

—Marc Stecker, Wheelchair Kamikaze

Book Description

The poems explore the theme of renewal in the face of adversity. Influenced by the haiku form, this collection offers a poem a day
for a year, though one can easily start on any page and progress in any order. Peace on the Journey is enrolled in Amazon’s Matchbook program. This means that if you already purchased the print edition in the past (or purchase one now), the Kindle price is reduced by 50%. Ten percent of net book proceeds will be donated to the Myelin Repair Foundation.

May my poems illumine your journey.

~ Judy

Work and Other Decisions

by Andrea of MS Changed My Life

We had no idea what curve balls the MS was going to throw our way, but we had the
basics: avoid heat, overexertion, and stress. I had been teaching 2nd grade for 4 years, so I was well established at my school.  I informed my principal of the situation when I returned from my maternity leave. I had asked her to not say anything to anyone else. From the beginning I just didn’t want people to see the disease when they looked at me. I wanted them to see me, not the MS. I don’t like for people to feel sorry for me or pity me. I never have. I handle what’s been given to me and move on with life. At any rate, I entered my 5th year of teaching that fall. I did tell some of my fellow teammates that if they see me stumbling through the halls, it was not because anyone had finally pushed me over the edge to cause me to drink at school.

That school year came and went without a hiccup. I regained the feeling in my legs about 8 weeks after the whole episode began. We’d done lots of reading about MS being passed on to children, and we found that our children would have a slightly higher chance of developing MS than “regular” children. Mine wasn’t a genetic issue. No one else in my family has it. I’m #4 of 6 kids, have 9 cousins, aunts, uncles, and grandparents, but I was the “lucky” one. We felt that it would not be a reckless or careless decision to have another child. I’d had absolutely no issues after that 8 week numbness in 2004, and I’d had a wonderful first pregnancy and delivery – other than going into pre-term labor as a result of our first pug passing away in my arms in the car on our way to the emergency vet. We are crazy pug people; 4 pugs and 2 cats. Pretty awful experience losing our little buddy. Our son was born 3.5 weeks early, but he was 7 lbs. 7 oz. and was perfectly healthy. We agreed that it was time for another little one.

My husband felt that it was also time for him to do what he could to support the MS Society by participating in the Cox MS Atlanta cycling weekend by riding 100 miles over 2 days. He signed up and raised money for the MS Society. It was obviously a charity event, but leave it to my husband to still make sure he crossed the line first. Our son and I raced to the finish (from home) to greet him. He finished so early that we missed his actual crossing of the finish line, but we were there soon after. That’s my guy! Forever in my corner.

Curtis’ first MS charity ride – September, 2005

This concludes the 152nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 6, 2014. 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 1, 2013.

Comments for this post.

Carnival of MS Bloggers #148

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

MS Camp

By Miss Chili's Hot Stuff

Next week, I'll be off to MS camp. What it's really called is something more like MS hospital-university. At any rate, it's only 4 weeks, which is why I think of it more like camp than anything else.

Four weeks of living in a small room with WiFi, with 20 or so other people of different ages, different lots of things that I'm not, including Danish-speaking. Ugh. More on that later, I'm sure.

Per and I were there on Monday for an introduction day. We went through the main building, saw the layout of the rooms, found where different activities took place, introduced ourselves to the rest of the 'campers' (*snerk*), and had a meeting with the woman who is my contact-whatchamacallit. During this meeting, we talked about what I could and couldn't do physically to what I would/wouldn't eat or what time I could possibly get up every morning to what I wanted to get out of my participation or what was reasonable to work towards -- not that they expect anything out of me, but this is something that many other MS-afflicted folk want to participate in, and not just once but as often as there is space available.

Going through the various rooms, from dining rooms to exercise rooms to patients' rooms, Per wheeled me through and, when we were in the exercise room with the enormous Pilates balls, he wheeled me on towards a ball, so that I had no choice but to kick it. That's my story, and I'm sticking to it.

Overcoming MS retreat, July 2013

from Miranda's MS Blog

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

So in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?
Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?
a) I didn’t know it all… & I’ll share my new understandings here,                                b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.
d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!
for this, it helped having a little cell, with no TV or internet connection….

So, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion. He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on http://www.overcomingMS.org , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

Here’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from http://www.flaxfarm.co.uk  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

Meditation
I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK.


This concludes the 148th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 3, 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, October 1, 2013.

Comments for this post.

Carnival of MS Bloggers #147

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

Inspiration is All Around

By Jennifer Digman

Not so long ago, it really would puzzle me when someone would tell me what an inspiration I was. Generally, I would smile, say thanks and think to myself, “You really should strive to find inspiration in something a little higher than me and my Multiple Sclerosis.”

I mean, has anyone ever told you what an inspiration you are? An inspiration not because of your latest accomplishment but because you’re living with MS or some other illness.

Really, like you had a choice in that matter?

It wasn’t as though some great mystic force said, “How about living with a chronic illness for the rest of your life?” and your reply was, “Why, yes. That sounds good like a good plan.” And your inspirational life began.

But it was my amazing husband, Dan, who made me realize people are not inspired by my just having Multiple Sclerosis: it is how I live with the disease that inspires others. My choice to move forward optimistically and with purpose regardless of what the disease dishes out may inspire some. I don’t live hoping to be an inspiration, but what a nice side effect to the decisions I make.

Honestly, there are times when my positive attitude tank gets a little low, too. Fortunately I’ve realized that inspiration can be found all around us. For example, after finishing my graduate degree and unburying my nose from textbooks, I’ve rekindled my relationship with my neglected television and have found some great sources of inspiration.

The Sundance Channel program Push Girls follows the lives of five women who have been paralyzed by either illness or accident. The reality show chronicles the day-to-day challenges and triumphs that Angela, Tiphany, Mia, Auti and Chelsie each encounter. Since my becoming wheelchair dependent, I had never seen such honest, accurate depictions of life with a chair.

My beautiful niece Elizabeth joins me on my standing frame.

These ladies are role models, inspirations and my peer group all at the same time. When Mia or Chelsie used a standing frame, they were strengthening their muscles—not thinking, “Hope this inspires someone.” But it did inspire someone – me. After buying my own used standing frame, I now stand 2 to 3 times a week for 30 minutes at a time. My circulation and breathing has gotten stronger. I feel more powerful and better about my abilities.


Just as the summer season ended for Push Girls, I slipped into Lifetime’s hit fashion show Project Runway another one of my other TV favorites! But never did I expect this program would introduce me to a designer who inspires me in my life with MS.

Justin is a 27-year-old fashion designer who is deaf. He is incredibly talented and lets his work speak for itself. As he has gotten closer to his fellow designers, Justin has taken the opportunity to gradually educate them about his deafness and the deaf culture. His opening up to others about his realities is the same way I aspire to help others understand MS and what it’s like to live with this chronic illness Dan and I share.

This is why he and I advocate, blog, speak and lead a self-help group. In addition to helping to better our lives, these activities also provide opportunities to help others move forward with theirs.

Like all five Push Girls and Justin, I don’t believe any of us are trying to be inspirational. We are just living our lives as best we can—much like so many of you who are inspiring so many others just by the way you live.

Do you ever think you are an inspiration to others? Whether or not you realize it, you are.

Every day.

This concludes the 147th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 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, September 17, 2013.

Comments for this post.

Carnival of MS Bloggers #110

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

Story Time

MS You're Never Gonna Win! by Madeline Adams-Gurowitz

Thanks, Amy! You're daughter totally rocks!!

Newbie

by Annie of Mama Melee Society

I am new at this game. It’s been five months, one hundred and fifty one days to be exact, since I experienced my first MS symptom

To those who have struggled with MS for many years, five months may seem trivial, but to me, as a so-called beginner, it’s been a long five months. I feel like I’m just beginning to understand the changes in my life, I am just beginning to learn how to deal with these changes. In other words I feel like a MS preschooler.

Do you remember preschool? For most, it’s a happy time of life. MS and preschool are surprisingly similar!

ABCopaxone. Preschoolers learn their ABC’s. The first thing I did was learn about was the various drugs available for MS. I chose Copaxone and inject myself daily. Did this scare me to death at first? Yes, (I may have cried) but now that I’m experienced, it’s no big deal.

Nap Time. Do you remember rolling out a mat for your preschool nap? Turns out, a daily nap works great for MS too! At least that’s the excuse I keep giving myself.

Recess-it’s not just for kids! Possibly the best part of preschool was recess. I have very few memories of preschool, but I do remember sliding down a slide at recess time. In MS, “recess” is simple: Exercise daily! I walk on my treadmill when possible. Something as simple as stretching also helps me feel better. I have a beginner’s Yoga App on my iPad that I’m starting to love too. Do what works for you.

Arts & Crafts. Every month Copaxone shows up on my doorstep, packed in ice, in a Styrofoam cooler. The coolers are starting to pile up in our garage. My children happily used two of these coolers to make Valentine’s Day Mailboxes to take to their school Valentines parties. What other creative ways can you think of to use those coolers?

Dress Ups. Did you have dress ups in Preschool? A box of costumes that facilitated becoming someone or something else? These days I feel like I am constantly wearing a costume. My first MS symptom was numbness in my right hand. After a few weeks, the numbness escalated into outright pain. Not being able to use my hand interfered with my ability to blow dry and straight iron my hair. So I gave up the hair battle and have gone naturally curly, which is much, much easier. Do I like my curly hair? I’m trying to. I still feel like it’s not really me (ironically), hence the “costume,” but I’m trying my best to adjust.

Story Time. Where do we get our MS stories? From the Internet of course! There are many great online resources for MS. In the early days soon after my diagnosis, I spent time reading all kinds of information online. After a while though, it just got plain depressing. The uncertainties of MS can be scary for newbies, but it is important to be informed of all the good, the bad and the ugly. Knowledge brings power!

Field Trips. We get to take field trips too! Trips to your doctor’s office can be fun! Ok, maybe not fun, but at least helpful. And maybe if you’re lucky, you’ll get a sucker.
Play/Game time. Are you exercising your brain? I’d never played a Sudoku game in my life till a couple of months ago. Try it, your brain will thank you!


Wash your Hands. We learned in preschool how to wash our hands. This is more important than ever, keep those germs away, keep yourself healthy. Always remember to wash your hands before injections.

Graduation! I’m going to go out on a ledge here and assume you graduated from preschool with flying colors. I did too! This gives me hope that sooner or later, I will be a graduate of MS preschool. Wish me luck.

This MS Moment is brought to you by the letters “F” and “U” and the number “2”

by Yvonne Sousa

It was Elmo that finally did me in.   Yes, Elmo, as in Tickle Me.  But maybe that is not fair.  While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street.  Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind.   The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

As I grew out of my toddler years her television concerns continued.   The Partridge Family was NOT ok.   The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country.  At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules.   I would watch Sesame Street with my four year old nephew and we enjoyed it immensely.    I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang “How I Miss my X” to a very sad looking X.   I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it?   Her ex is the letter X!   Isn’t that a riot?  And look, X misses her too.  They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

Anyway, back to modern day.   I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month.   After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.

Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called.  Much to her dismay as it was her lunch hour, I was an hour and ten minutes early.   No, I hadn’t bothered to check what time I was due there.  My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.”   It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me.    My mind continued to swirl with all that had piled up that month and of all the things I had to do.  But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not).  And so, with this round of paperwork done, I grabbed the thing closest to me to read.

It was a book from a Sesame Street series called Sesame Street Library.   In it, loveable Elmo ventures into the library looking for a Little Black Puppy.   As he searches he gets distracted from his important task by story hour.   I do that all the time.   Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission.  Betty Lou offers to help.   She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.  Poor Elmo has been misunderstood.  I can relate to that too.  More evidence our furry red friend might be afflicted with a myelin damaging illness.

He explains his plight again.  He is looking for an actual puppy that is missing and happens to be black and little.  Again, the kind Betty Lou wants to help.  Back to the card catalog they go and then to the stacks where she produces a book called “How to be a Detective.”

“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there.  Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search.   Elmo excitedly thanks her.   That’s when I lost it.  In the lobby of therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceed to yell at Betty Lou.

“Betty Lou that is NOT helpful!!!!!  What kind of friend are you?  I know you mean well but if you really want to help, start looking for the damn dog!   How long do you think it will take Elmo to read all those books before the search begins?   After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have.   Can’t you just help look in corners and yell ‘here Fido’ or something?  How bout you read the damn books and then get back to him?”

Poor Betty Lou.  Perhaps she didn’t deserve my wrath but she was not alone.  Elmo was next on my “need a good talking too” list.

“Elmo, don’t be a putz!  Tell Betty Lou what she can do with her freaking books and where to go.   Don’t stand there with that stupid smile expressing all kinds of false gratitude.   Throw the books at her and start looking for the dog.”

I suppose the moral of the story was that you can find anything in a library.   But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern.  She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure.  She asked me what I was looking for, therapeutically speaking.  Then she told me where I could research the answers to what I was looking for.  She recommended some books.  I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that MS has got him too.

Image: sheelamohan / FreeDigitalPhotos.net

10 Things That Will Make Life Easier for People with Disability
by Renae of msrenaeclare

1. Dragon naturally speaking voice recognition program. Since I am no longer able to type, thanks to this goddamn Multiple Sclerosis, and I am paralyzed on my left side I am using the voice recognition program for my computer every day when I write. It has saved me from untold angst, frustration and exhaustion. Having MS makes everything exhausting so something as wonderful as this program makes it fun again to do what I love. Of course, it makes some serious errors and sometimes refuses to curse for me. But what the hell, it’s a small price to pay.

2. Ex N Flex. These machines are really great for people who need to exercise their arms and legs and they are recommended by the Multiple Sclerosis Society. I use them every day and without them I would be at a loss. They have my highest kudos and their customer service is bar none.

3. e-books. I read a lot and before e-books I had a hard time holding books properly and drop them often. Because I have to spend quite a lot of time in bed because of MS and read tons of books and I am so thankful for this wildly successful adventure.

4. e-reader. There are so many kinds of readers on the market. I am using the Samsung Galaxy tablet. It’s just the right size for me to read in bed and has Internet features and lots of apps so if I need to look up something while I’m reading, the information is right there in my hands.

5. Handy ride transportation system for people with disabilities. This wonderful program is based in Dallas, Texas and I don’t know what I would do without it. With my wheelchair I am no longer able to get in and out of our car and these wonderful handicapped accessible buses just lift me up or down the ramp and we’re off on another exciting adventure. Without it I would be stuck between a rock and a hard place.

6. Invacare alternating air electric mattress. About a year ago I was hospitalized for many months with a very serious bedsore. When I got home I bought an Invacare air mattress that is the same type that was used by Christopher Reeves. It automatically rotates my body from one side to the other every half an hour and I love it. No more sores.

7. Life Alert. Of all the good things that I’ve done to help myself, this is probably the greatest. It has saved me from countless injuries and the countless times that I have fallen I have had five or six gorgeous fireman pick me and put me back where I belong. This is the number one program you need to get if you find yourself in danger. Believe me you will thank me. It’s a wonderful system and could possibly save your life.

8. Certified home health care aide. Oh, happy day when my present home health care aide showed up at my door. It’s been a long and bumpy road to try and find someone who is kind, professional, and honest. I found her and I love her. If you need help start the process. It’s well worth it.

9. Catheters. Another stinky piece of business but what can you do. The catheter was invented by Benjamin Franklin when his brother was having trouble in the nether regions so we can thank our wonderful forefather for helping out. He would be proud to know what his grand invention has done for mankind. And I can attest to that fact.

10. Bedside commode. My bathroom is small and my wheelchair is cumbersome so I decided enough is enough. There were several times when I had to be rescued by Life Alert and one time I actually broke a rib trying to get onto the toilet. I need help to get on and off the commode but Multiple Sclerosis affords us very little privacy. Embarrassment and humiliation are synonyms for MS. The alternative was just too awful to concede.

These are all steps that I took one at a time over the course of years and looking back on it now I see that each one of these 10 things has added a little more independence to my life and I hope to yours.


This concludes the 110th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 29, 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, March 27, 2012.

Thank you.

Comments for this 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 #105

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

Strength, Hope, and Forgiveness in the New Year

Forgiveness and Letting Go

by Kate Wolfe-Jenson of Dancing with Monsters

Whether it's forgiving myself or someone else, I've discovered it's a practice.
I love practice. Have I mentioned that before? Forgiveness is built into practice.

1. I plan to do something. (Intention)
2. I make an effort to do it. (Action)
3. It doesn't go the way I think it "should" go. (Judgment)
4. I let go of my ideas about what should have happened. (Mercy)
5. I reset or re-envision my intention. (Resilience)
6. Repeat.

Watching myself around forgiveness, I have found an unfortunate tendency to get stuck on step three.

I judge. I try to let go, but it really shouldn't have gone the way it did and it's really not my fault, but if I'd only done it differently…

The image that came to mind is of carrying around a stone. I set it down for seconds and then, compulsively pick it up again.

Forgiveness becomes a practice of letting it go and letting it go and letting it go.

What Race Will you Win?

by Dee Dee Vickers

Some days my MS body feels okay -

but other days, in the bed I want to stay.

But get out of bed is a must for me,

cause if I don’t, that’s where I’ll always be.

One side of my left leg doesn’t feel right,

and the right side feels really tight.

But do a few stretches before I arise,

and once I’m up, each day is a surprise.

What challenges will I face walking the pool?

At least 30 minutes of workout is always my rule.

Then home to shower, and “put on my face;”

And now I am ready for the next big race.

Run a race, I think not for me;

but other challenges I soon will see

Paint a picture, arrange flowers in a vase,–

write a poem – these I consider to be my “race.”

We all have a different “races” we face each day;

but stay in bed, those races won’t come our way.

So stiff on one side, ache on the other,

but think of the “miles” we have still to cover.

Yes, it all comes when the sun peeks in at us

and no matter the ills, “just don’t make a fuss…”

The world is our canvas to paint on each day

So get out of bed and be on your way!

Dee Dee Vickers

Georgetown, Texas

January 5. 2012

Untitled

by Natalie of Sunny, With A Chance Of Clouds

To protect a mind too fragile.
And determined by those misguided,
There is a purity that should remain unaffected.
If innocence and love could be spared.

And even though good intentions are meant,
The disadvantage comes to the one.

To become shielded,
Is no escape from that which can not be erased.
One shielded remains confused.
And is convinced truth must be avoided.

One shielded remains convinced...
A running away from any hints of truth is a benefit.

Unfortunate are those forever troubled.
Running away to shelter themselves,
A lie to comfort.
When truth is not enough,
Or which truth hurts too much?

You Can't Be Too Strong

by Marc Stecker of Wheelchair Kamikaze

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it  through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…


This concludes the 105th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 19, 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 17, 2012.

Thank you.

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