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 #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 #142

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

Why I Ride - Rick Parker

by Rex Parker of Biking MS

A lot of you know that I ride Bike MS in honor of my late brother, Rick. But only a few of my friends in Boise were fortunate enough to get to meet him. So I thought I'd write a bit more about Rick this week, so that everyone could get to know him a little better.

First off - I had three older brothers, and had a very different relationship with each one. Here's the line-up...before you start writing comments about my cardigan, I should tell you this picture is 25 years old.

From left to right: Russell, Robert, Rex (me), Rick

I am the youngest, Rick the oldest. Despite the age difference, he was my best friend. Russell was closest in age to me, so of course we fought all the time growing up - and there's still some tension there today. Robert helped raise me as my parents farmed and held down second jobs. My relationship with Rob was more parent-child growing up, so that was often adversarial as well. That changed as I got older - Robert and I grew very close in our adult lives.

Rick, however, was always my hero. I absolutely idolized Rick growing up. Being the oldest, he was in and out of the house when I was a kid. His visits from college were the highlights of my year. I'd count the days until he arrived for a visit, and I'd cry when he left. Many of my best childhood memories include Rick.

Rick Parker, HS Senior Photo, 1975

One of those many memories is when Rick took me to see an R-rated movie when I was 8 or 9 - the first "Alien" movie at the drive-in in Terry, Montana. My parents told him not to, but he knew I wanted to go and snuck me out of the house to see it. I spent a good part of the movie on the floor of the car, scared to death. But I loved it. If my parents read this post, this may be news to them.

Rick also taught me how to shoot a basketball. If you've ever seen me play basketball, you'll realize I'm not doing Rick any favors by telling you this.

Rick fostered my love of reading - and his gifts of books were a constant throughout my life, starting at age 7 with a science-fiction art book that I have to this day. Rick was not a casual gift-giver, either - nearly every book I got from Rick has a hand-written inscription inside. Rick was a gifted writer, and majored in journalism in college. I treasure those books.

When Rick was crippled by MS, he kept the gifts coming. He once wheeled himself downtown several miles to meet Steve Earle (one of my favorite music artists) before a concert, at a book signing for Steve's first book, "Doghouse Roses." And then he wheeled himself home in the dark. All for a gift - not a birthday gift, not a Christmas gift - just a random gift that he knew I'd love.

Rick and I often liked the same books. Rick once read a book called "West With The Night," an autobiography of the first person, Beryl Markham, to fly over the Atlantic from East to West - and he knew I'd love it. Rick had a very hard time leaving the house in those days, and had no use for computers (no internet shopping for him) - so for Christmas that year, he inscribed and gave me HIS copy of the book.

I could fill an entire blog post with nothing but stories about Rick's giving. If he had $10 to his name, he'd want to give you $20. And he always wanted to provide the best for his kids.

Back to the pre-MS days...

When I graduated high school in 1987, I left home immediately to go spend a year screwing around with Rick in Missoula, Montana. Rick had just met his future wife, Earlene, and would soon be starting a family. I was driving a 1966 Chevrolet Biscayne that was on its last legs, so I biked a lot that summer. Having no bike when I got to Missoula, Rick set me up with a sweet old Schwinn Le Tour.

Rick's family from left to right: Travis, Rick, Earlene, Jeramy - around 1994

Rick was an avid road cyclist, and was starting to get more serious about it - he had just upgraded to a 1987 Schwinn Super Sport - which was a very expensive purchase, I'm sure, for a guy trying to finish college and working nights at a hotel. As many of you know, that Schwinn Super Sport is the bike that I rode in Bike MS Idaho last year (more on that bike later.) One of Rick's favorite events was TOSRV (Tour of the Swan River Valley) and he was also the top fund-raiser in the 1987 Montana Lung Association ride, where he won an early mountain bike - a Bianchi Grizzly. As I look back, many of the things I'm passionate about - craft beer, cycling, music, reading - are all things that Rick was passionate about as well. To say that Rick was influential in my life is an understatement.

Life moved on - I joined the Navy, then went to college (Go Bobcats!) Rick got on with his life as well - and seemed to ride less and less as he did all the things you do to start a new family - house purchase, raising kids, etc, etc. But cycling was never too far from his mind. As time went on, Rick and his family were a constant presence in my life. Many trips to Missoula, many concerts and other outings.

During my college years (1992 - 1997) there were some incidents that were, in hindsight, clear warning signs for MS. Rick would get awfully shaky sometimes after having a few beers, which I chalked up to age. Now that I'm the same age as he was at the time, I realize how ridiculous that was. Also, he would complain sometimes about his leg going numb while he was at work. For hours at a time. You'd think that would warrant a trip to the doctor, but Rick never went (to my knowledge) - and I don't think any of us were armed with the information we have now about MS, so I don't think anyone was pushing him to get it checked out.

After college, and a quick two-year stint in the Bay area, I moved to Boise. The proximity to Missoula (compared to San Francisco) was nice, and Rick and I got back to more regular visits, often around Montana State / Montana football games. One of those years (2002, I believe) Rick came down to Boise to spend the football game weekend with me. He seemed a bit off that weekend, and was particularly sick on Sunday. Then, after flying home Sunday night, he woke up Monday and found that he had completely lost vision in his right eye.

Things progressed swiftly at that point. The MS diagnosis came quickly - steroids cleared up his vision, and the fight began. It wasn't much of a fight, though. By the time he was diagnosed, the MS was pretty advanced. There were no significant remissions, and MS took him down steadily limb-by-limb. He went from a cane to a walker to a wheelchair within two years. Soon, it was hard to understand him, as MS took out his facial muscles. The eyesight would come and go.

There would be some brief respites, after steroid therapy, but they didn't last long. Rick would often schedule those right before a visit from my parents so they wouldn't see him at his worst. I think that the pain the disease caused his children and my parents affected him more than the disease did.

I should also note that we lost Robert to a tragic car accident in 1998 when he was only 37. My parents had already buried a child, and they were facing losing another. I will never be able to fully comprehend the grief this caused them. Rick understood this, though, and I'm sure it tore him up.

We lost Rick in August 2011. He was in a nursing home at that point, and had lost the ability to swallow on his own. He was getting serious infections, could no longer feed himself, and I think a breathing tube was on the horizon. Enough about that...

Maybe the worst effect that MS had on Rick was the depression that he fought. He spent some time on anti-depressants, but I don't think he liked them. Rick did not always take his degrading condition gracefully. The vast majority of the time, Rick was the same sweet, generous man he always was - but at times he could be very difficult to be around. I think he yelled a lifetime of profanities in those years. MS did that. MS took him from us, I think, long before he physically passed away.

I stayed in Missoula the week after Rick passed away, doing what I could to help Rick's kids with all the required arrangements. It helped to have tasks to focus on. At some point in the week, I noticed the Schwinn Super Sport hanging up in my nephew Jeramy's garage, and it appeared to be in great shape. It had been well cared-for all those years. The bike was just a bit too big for either of my nephews, so Jeramy asked me if I wanted it. I sure did.

Soon, I was riding that bike all over Boise, and having a blast on it. I hadn't ridden a road bike in years. For a long time, I was too fat to ride a road bike...but had recently cleaned up my act, was fit and raring to go. I don't remember where or how I first heard about the MS 150 bike ride, but the minute I heard about it - I knew that I wanted to ride it on Rick's bike. And I did. It was one of the most rewarding things I've ever done and I would give anything if Rick had been around to share the experience with.

Rick's Bike at Payette Lake, near downtown McCall, ID

Unfortunately, the old Le Tour and the Bianchi have not survived the years - but if I ever part with that '87 Super Sport it will have to be pried from my cold, dead legs. Thank you so much, Jeramy, for entrusting me with it.

I think often of Rick's and my last road trip together. I was fortunate to be able to take Rick to Glacier National Park in 2007. It was a great trip, but challenging, as I was an inexperienced caregiver. Rick was very patient with me that week. He was in his element in the Lake McDonald lodge - striking up conversations with everyone he could, joking and laughing as much as possible. In particular, I remember the night we ate dinner in the lodge. Rick had a very difficult time holding eating utensils at the time, and we were still trying to figure out how to make that easier for him. As a result, half of what was on his plate usually ended up on the floor. When our very eager, college-age waiter came over to serve us, Rick started laughing uncontrollably, and when he finally composed himself, said "This poor kid has no idea what he's in for tonight!"

Rick on the Trail of the Cedars, Glacier National Park, 2007

If Rick could see me struggle to write this blog post, he'd probably have a good laugh as well - and call me a "buffoon" - one of his favorite words. I wish I were as eloquent a writer as Rick, but this will have to do. And I'll just close by saying I think about Rick every day and would give up anything I own to have one more conversation with him. I know that won't happen. But if, through sharing Rick's story, I can help make life a little better for someone else affected by MS - I know Rick would be very pleased. And that is why I ride Bike MS.

This concludes the 142nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 13, 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, June 11, 2013.

Comments for this post.

Carnival of MS Bloggers #129

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

Rediscovering One's Self

What's for Breakfast? Watercolour Hibiscus

by Linda of Bright Wings of Summer

Funny days

Warning: This post may use the words poo &bum, and cause outright laughter...

What did you have for breakfast? Sometimes my days are very boring, and not much happens.  Other days...

It started yesterday.  During a fab day out Christmas shopping with a girlfriend I developed a sore ankle - which I naturally ignored - never let a foot impediment get in the way of a good Girls Day Out!  Then later that night, exhausted, and with Hubby just getting home at 6.45, and no dinner on the table - I said - well lets just have waffles!  SO there were were at 8.00pm at night having waffles, and cream and maple syrup - for Dinner!! (At least they were sourdough, and have eggs in them... I won't mention the vast quantities of fat in the butter.  or cream. Not if you don't. )

Anyway - My sore ankle? is still sore... this morning I discovered it has a reduced range of motion.  So what? Well after a quick google check - don't you love google - it has ALL the answers!  I have spasticity in that left foot now it seems. Yucky yucky yuck poo bum.  (I DID warn you!)

So what?  Well I have MS (Multiple sclerosis) (If you don't know what that is go and google it.  Try wikipedia.  I'll wait)...

So - this is my First sign of progression since 2006,  I'm not happy 'bout that.  Which means today is now a designated "rest, stay cool, and no stress day"... Right... other than paying the bills, taking the framed art to the shop, returning a broken frame to K-Mart, and the FN (fortnight) grocery shop?  With a heat wave coming.  Well 30 is a heat wave for me...    Hmmm my list of things to do is huge, and now I need to make dr appointments, and think about treatment for spasticity -which means physio, or doing stretches myself, which will still take more time out of my day - groaning melodramatically -

why is life never simple?  

O.K. need to stop thinking about the list. It's making me stressed just thinking about it.  Right then - No lists. They are evil.  (Except when you read other peoples lists on Aimees List it Tuesday :-).

I Breathe. Nice thoughts. watching the birds enjoy the bird bath.  Oh, and see the cat watching them through the window - cute.  But  I know what he wants to do - go outside and eat them.  Don't think about the psycho teenager Alpha Male Cat who wants to go outside and hunt...or the fact that both the cat litter trays really, really do need freshening up... or the cat hair dust bunnies I know are there somewhere if I look... nope not looking.

Instead Look at the pretty flowers in the vege garden...without thinking of the fruit fly that have already stung the tomatoes, which requires a trip to Bunnings to buy fruit fly traps, or netting, or napalm... and definitely don't think about the 28 spotted lady beetle that you know is lurking on your eggplant leaves having a munch...

Thinking about munching...Hmmm getting hungry - time for breakfast.  At least we have bread (it's only just a little stale), and eggs, and milk (just enough for a coffee).. which I'll surely need if I am to be superwoman and figure out what I can do with the 2 wrinkled apples, and a sad lemon, I can see in the fruit bowl...  Nope can't be bothered with the eggs - there is just enough waffle batter left for 1 more - and THAT's what I had for breakfast!

It's Complicated 

by Kim of Doc, It Hurt When I Do This...

We cripples have learned a thing or two about the Laws of Physics.  For example, a body in motion stays in motion and a body at rest tends to keel over and plant itself face down on the sidewalk.  That’s one of the easy ones.  Gravity claims us all sooner or later, but it claims a cripple a little sooner than most.  We know that aging is the great leveler, we’re just waiting for our peers to catch up with us. We might need a cane or wheelchair in our fifties, but don’t we feel a bit smug whenever some able-bodied person scoots around us, frightened of his own inevitable decline?  That’s okay, we think, you just keep running, buddy, the day will come when you can’t run anymore. You go, Charlie. 


We cripples have also learned a thing or two about love. How spouses, for example, who love us very much, can entertain a twinge of disappointment when we cannot go for an impromptu walk around town, enjoy the rush of blood in our limbs and the air in our lungs, the quickening heartbeat, the children playing catch in the street and the sun slipping towards the horizon. It is an uncomfortable feeling, disappointment, it makes them feel that perhaps they are not good people for having such twinges. So they push it away.

But these small disappointments can accumulate over time. We are not aware of this, of course, though we do worry that it is being felt. We perform reality checks on an annual basis, we give our spouses opportunities to come clean.  But they reassure us, year after year, that it doesn’t matter, honey, I love you, I’m not going anywhere. And we believe them. We believe them because they dote on us, bring us coffee and cook our breakfast on Saturday mornings. They do all the housework and grocery shopping, open packages for us, chop the veggies for dinner. And they do not withhold affection, we get held and kissed and gazed at lovingly every day. So it must be true. It doesn’t matter. They love us. They aren’t going anywhere.

And yet we have doubts. We push those doubts away and tell ourselves they are of no consequence.  But they infiltrate our bliss in various ways; in my case, in a recurring nightmare. My husband and I are at some event in a large building with a stage. When the performance is over we head towards the exit along with everybody else. The crowd swirls around me and my husband is no longer at my side. I search for him, spot the back of his head a few yards away and push through the crowd in that direction. But I lose him. I cannot see him anywhere. My vision begins to darken and my legs weaken. I hobble along corridors through room after room and decide to head for an exit, he’s sure to be outside waiting for me. By the time I reach the door, the building is empty and I am alone. I step outside into the waning light, hysterical with grief, and peer at the narrow distances, past a now empty parking lot and across a barren landscape, and drag myself in the direction of home. Just before I go completely blind, I awake.

An MSer’s worst nightmare is not physical decline, it is abandonment. A couple of months ago, my husband of not quite two years, my partner for six, my doting, kind, funny, compassionate mate, informed me that he didn’t want to be married to me anymore because he resents my disease. I cannot be his activities companion. He feels like a coward about the future. He cannot be the husband I need and deserve.

It doesn’t matter, honey, I love you.  I’ll never leave you. Yes, he spoke those very words, year after year. Old reliable, he was. Like a 20th century car that gets an annual tune-up by its conscientious owner even though it never needs the points and plugs replaced. The fact that you cared enough to perform routine maintenance endeared you to it in a human kind of way. Unnecessary maintenance, but cute, very cute. I get a pat on the head for being so aware, so thoughtful, so painstakingly dedicated to taking nothing and no one for granted.

What isn’t cute is that annual reality check was never an invitation to placate me. I was not trolling for the lie, I was courting the truth, the whole truth, and nothing but the truth, so help me God. I’m funny that way.  I need to know even if it hurts. He knew that about me, knew that if he wanted out I would want to know about it. I told him that. Honey, if you ever decide that you don’t want to take the whole journey with me, I’ll understand. We’ve all got to follow the path we think will make us happy. And I meant it, every word.

Perhaps it was pride that held him back, or the prospect of getting bad press, I’ll never really know for sure.  Look, there goes that guy who dumped his disabled wife. What a putz. There are not a lot of ways to spin that kind of abandonment in a way that would make yourself a sympathetic character, goodness knows.  Judgments would be harsh, there is just no getting around that. It’s enough to hold a husband hostage in an unhappy marriage for months, even years. Keeping such a grave secret took its toll on him, and when he fessed up to me about his unhappiness, he wept deeply and often while I took in the news; I was at first incredulous, then defiant, bargaining for a delay in his decision until he sought therapy. Eventually, acceptance silenced me. I had just gotten the news that my marriage was dying and I had the grieving ahead of me, but for him it had died long ago and he was simply revisiting the grave with a heavy and regretful heart, only this time, he had brought me along. I had to leave.

He moved me back to my mother’s house where I had lived for twelve years before meeting him. I lay on my old full-sized bed and cried, feeling as though I had been punished and sent to my room without supper.  My mother had painted my old bedroom white after I’d moved in with him. And I suddenly felt as though I had never left that bed, that I’d been in a coma for five years, dreaming that I lived in another house with a husband, two dogs, three birds, a garden, lulled by the sweet strains of marital devotion, and now I had awakened back in my old bedroom, the white walls being the only proof of the passage of time.

A month has passed since the separation. I was sad, grieving, angry, bewildered for the first two weeks, but I’ve stopped crying now. I feel relief, I’m free. Liberated because I am no longer waiting for him, no longer feeling guilty for not being normal, no longer afraid that I’ll disappoint him. The worst has happened, I’ve been abandoned because of my disease.

But it is not the hardship that I feared it would be. I missed him for a while, for two weeks, but then I stopped, and that in itself troubled me. I realized how distant he had become for the whole previous year and how easily I had made excuses for him. He was tired, he worked two jobs and had other responsibilities besides. He was in a twelve-month rehab program and I figured I was there on a rain check for a year, I’d wait for him to finish it and then I’d get him back again. So I waited. I championed his progress, felt proud of him, in love with him, desirous and lonely, yes, but he was going through a tough time and I should try not to act too needy. I was very patient. I thought we were happy. I thought I was happy, but I wasn’t. And the fact that I stopped missing him so quickly saddened me, it meant the relationship had been over for me, too, and for quite a while. I simply hadn’t owned it.

I saw a therapist immediately, before I left my husband.  In my first session, I told my therapist that I was suffering from low self-esteem, that my self-worth was in the toilet. After all, I’d just gotten dumped out of a marriage because I was not whole. But by the end of the session, he told me a startling thing:  I possess very high self-esteem, I just think I don’t. We call that cognitive distortion.  

The distortion, it seems, came about when I got the bright idea to abandon my expectations. One should have expectations in a marriage, who doesn’t know that? Apparently, I don’t. I didn’t expect my husband to want to share activities with me, explore the depths of intimacy. I didn’t expect him to make plans with me for the future, be my health advocate in an emergency, I didn’t even expect him to want to be married to me forever.  Gratitude had displaced any reasonable demands I might have made. Gratitude so deeply ingrained that I felt I hadn’t the right to intone: “Please, sir, I want some more.” After all, I wasn’t a starving, abused orphan in a workhouse. I was well-fed and loved. What more could a middle-aged cripple want from a new husband?

And I had my own pride to contend with, my own fear of bad press. The odds were against us, so many women with a chronic disease or catastrophic illness are abandoned by their husbands. I didn’t want to become a cliché. Having expectations certainly wouldn’t tip the odds in my favor. And so I never protested when he wanted to stay overnight on his sailboat Friday nights, join a rock band, rehearse two days a week, and gig on the weekends. He had his freedom and I retreated to my office, seeking refuge in my online patient community of friends. There, I developed the intimacy my marriage lacked.

Now that I am single again, my friendships continue to nourish me, I still have the intimacy. And I’ve made plans to find my groove again as a writer, I’ve long neglected a book I started writing several years ago.  But what continues to haunt me is the notion of expectations. If I ever consider marriage again, I must bring to the table a list of expectations and a promise to myself that gratitude shall be reserved for acts of kindness only and never become the sole tenet of my marriage philosophy. The prospect of such a thing seems daunting right now, in fact, it upsets me to think about it.

The fact that it troubles me to imagine such a testament to self-worth means I have some healing to do yet.  And heal I shall.  My husband has given me a gift I would never have asked him for: I’ve gotten my whole self back, intact, for the most part. And I won’t squander it.  Not ever.


This concludes the 129th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 20, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 18, 2012.

Comments for this post.

Carnival of MS Bloggers #126

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

Happy Belated Carnival
from the Newly Married Lady

 

Rob and Lisa

(a few select photos from the big day)

Pregnancy and MS – Reducing Risk of Relapse After Delivery

by Dr. Yumi of Universal Balance Consultations

OK, here’s Part II of my article on reducing the risk of relapse after delivery. Remember in Part I, we talked about how much your risk increases after delivery, and how important rest is to recover properly and avoid relapse. We also included some tips to make sure you get that rest.

PART II
Nourish your body for post-delivery recovery
Next is diet. I can’t stress the importance of proper diet enough. Not only will you be providing nourishment for yourself (and the baby if you’re breast-feeding,) a nutrient rich diet with some selected items will actually speed your healing process. And by recovering and strengthening the body, you’ll be reducing your chances of relapse.

“So what foods are best to nourish, and promote healing and strength after delivery?”
As soon as you get home from the hospital, you should make a big pot of Recovery Soup. It should have the following ingredients:

• Lamb, pork kidney or carp (one or more)
• White spring onion or white scallion, (the white parts are especially important)
• Ginger (freshly crushed or cut into thin slices is best)
• Dong quai (Angelica sinensis)

After that, just add more of your favorite vegetables, salt to taste and maybe some light seasoning. But you don’t want to use any type of spicy ‘hot’ seasoning, (chili pepper, cayenne pepper, and the like.)

There are other herbal supplements you can use to recover and nourish if you’re interested. But the Recovery Soup will make a great base to start from. I recommend you have a bowl or two each day for at least one month after delivery, or as long as you’re breast-feeding.

For the remainder of your diet during this period, you want to be eating as many nutrient rich foods as you can, which means include fruits and vegetables in all your meals. Also, stay away from fatty meats and junk food. I shouldn’t have to say here to avoid buckets of greasy fried chicken and value meals from the local fast food joint. But I will. Avoid them!

These should be a very last resort; so maybe suggesting specific dishes you’d like to your friends in the cooking rotation would be a good idea. (See Part I) You want to strike a balance between healthy and tasty.

With the combination of rest and a nutritious diet, you should be well on your way to recovering from your delivery, and thereby reducing the chances of your symptoms flaring up. If you’re not interested in the diet, then the best thing to do is to just rest as much as possible after delivery. And avoid exerting yourself at least for a month or two. This will allow your body to heal. But I highly recommend you supplement with your diet.
Great, now you know how to regain your strength and avoid relapses. But you may still be wondering what it is that makes you more prone to relapses just after delivery.

What’s the deal with pregnancy and relapses?

According to oriental medicine theory, the kidneys are a major energy center, and govern the brain, back, spinal cord, bones, and bone marrow. The kidneys also store prenatal energy and control birth, growth, maturation and sexuality, so they’re one of the main organs that support pregnancy.

MS patients have lesions in the brain and/or spinal cord, which means your kidneys are probably already weak. (The kidneys could be the original problem, or they could have been weakened by some other imbalance.) Nevertheless, pregnancy, delivery, breast-feeding, sleep deprivation, overexertion, or any kind of mental stress, further burden the kidneys.

When the kidneys are weak and overtaxed, the risk of relapse increases.
You’re particularly at risk if you’re breast-feeding because your body is still weak from the delivery, and your kidneys are providing nourishment for both you and the baby. This especially drains your kidney energy, so you might want to consider switching to formula after a month or two. However long you breast-feed, though, be sure to have the Recovery Soup for the duration.

You just don’t want to take unnecessary chances. Everything about your pregnancy and delivery is putting a strain on your kidneys. So it’s important in the first few months after delivery to properly heal and allow your body and kidney energy to strengthen.

All right, so now we know what’s going on with your kidneys and why women with MS are more prone to relapses. We’ve also learned how we can avoid those relapses. By following the guidelines I’ve presented, you can rest easier knowing you’re taking appropriate steps to maintain your health.

I hope this information has been useful to you and will help keep your own pregnancy episode-free. Especially if you have MS, you need to take good care of yourself, so you can in turn take care of that precious little person who’s just come into your life.
I’ve enjoyed presenting this info here and look forward to discussing further MS topics with you. Thanks for your time.

Dr. Yumi Izumisato

This concludes the 126th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 8, 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, November 6, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #125

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

Synchronicity and Balance

 

Today's Lucky Numbers

by Lisa of Brass and Ivory: Life with MS and RA

Today's date is 10-11-12.

On its own that's pretty cool.

But knowing that it's only

9 days until our wedding is even better.

10.11.12 + 9 = 10.20.2012

Synchronicity 

by Mary of Travelogue for the Universe

Synchronicity

is

Timing

on Steroids.

Another Concept

referred to  by

Edgar Cayce

and other mystics

and dreamers.

Do you ever

open a book and find

it is exactly where you wanted to be?

Do you ever get somewhere and find something

you needed and yet were not looking for it?

Do you ever paint a picture,

wondering

What is it that

you are trying to say,

and when you are done,

You see the results,

so obvious,

a perfect result,

then you show another person

and they are affected,

with the emotion you had,

brush in hand, struggling to find the right

colors, strokes, tempo,

and you see the message as a thread

between you and another person,

and you see how special it is

that this whole experience even happened

as it was meant to be,

The Timing felt so right,

That is

Synchronicity.

A love/hate relationship with tablets.

by Alison of Beauty and meaning in a broken world

7 things that I hate about putting my medications for the week into my pill box:
1. It takes a long time.
2. It reminds me that I have a lot of medical problems.
3. There are too many tablets and the lids hardly close.
4. There is a lot to remember and keep track of. Do I need a refill? Will I get it on time?
5. They are small and fiddly and I keep dropping them.
6. They make me dizzy, unfocussed and unable to have more than 1 glass of wine.
7. They remind me that I have MS.

5 things I love about my tablets:
1. They cheer me up.
2. They reduce my pain.
3. They make it managable to go out in public.
4. They let me sleep at night.
5. They help me survive.

This concludes the 125th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 25, 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, October 23, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #118

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

MS in the Movies, Best and Worse Things to Do After Diagnosis

Movie Time!

by Thomas at BiPolar, MS, and as handsome as ever

You know, there are days when you think you're doing real well with these disorders. This morning I was up early, shared breakfast with my wife, sent her on her way, and then did some reading. Following a chapter of a Buffy the Vampire Slayer story (yes, I enjoy the classics), I did my stretches, exercises, and then hit the road for a mile walk, headphones and all. Back home, I grabbed the newspaper, plopped on the couch, opened the paper and immediately fell asleep for one hour. This set back all other planned activities. Yesterday MS/BP let me ride my bike to run errands, then work in the yard, and get a lot of reading done, including Chris Matthews' book on JFK. Thought I could get two days in a row. Silly MS boy. Now since I'm all messed up and foggy as a London night, I'll try this.

Let's go to the movies!

It's Tuesday as I write this and I usually take in a flick today at one of the local movie houses. It's also two dollar popcorn day, and if the person taking the money and giving you your ticket is "of a certain age", I can squeeze in as a senior. Once you hit 55, and have a pension to live on, the words "early bird special" start coming out of your mouth. So over this summer I've seen everything from Prometheus to Abraham Lincoln, Vampire Slayer. I'll leave reviews of those epics to others, but just a note to the Abe Lincoln producers - please remember to keep that mole on his face all the way through the film, and by the way, during his Presidency, he had two other kids aside from Willie. I know, I know it's all made up. Alas, that's where some kids get their history from.

Anyway, below is a list of movies (and TV show) that featured a character who was either diagnosed bipolar or with MS. No one would ever figure on someone who had both, right?

Bipolar disorder: Splendor in the Grass (1961), A Woman Under the Influence (1974), Mr. Jones (1993), Michael Clayton (2007), Observe and Report (2009), The Informant! (2009), Shine (1996), 3 (2012), Homeland (TV) (2012), Lust for Life (1956), Frances (1982), Cobb (1994), Call Me Anna (1990), A Fine Madness (1966), Bulworth (1998) (for the rap scene alone)

Multiple Sclerosis: Hillary and Jackie (1998), Duet for One (1986), The West Wing (TV) (1999)

Bipolar is winning the race for most characters, probably because if you need someone manic, you can get it, if you need someone depressed, eventually you'll get that. Now these lists are not complete certainly and are from various sources around the web. You can find most if not all at Netflix or Amazon. I have seen some of these films and I intend to see more, but here's the one I'd like to talk about:

Duet for One. This is a small film, and is really based on the life of Jacqueline du Pre', so I guess you can watch either of the MS films noted here and get the same idea (See, it's not that Hillary and not that Jackie - it's the du Pre' sisters, Hillary and Jackie). Anyway, Julie Andrews was nominated for a Golden Globe for her performance as a concert violinist who contracts MS, and the movie is about how the decisions of her life after diagnosis affect those around her. You also get to see Julie undress, have sex with Liam Neeson, and say the F word a lot, which to a mind that still sees Mary Poppins and Maria from Sound of Music is a little disconcerting, but Ms. Andrews is a fine actress, and is supported by such greats as Max Von Sydow and Alan Bates who I think was in every British movie during the 70s and 80s.

But here's what bothered me. The character Ms. Andrews plays, Stephanie, constantly refers to herself as "a cripple." Now this movie was made in 1986, and since we're looking at 25 years ago, there were limited treatments, if any, and so she deteriorated at a faster pace, but a cripple? Perhaps I'm looking at the film (and before that a successful stage play) from too far away, or perhaps its a British thing.

But take a look at it yourself....

The whole thing is on You Tube. 10 parts but easy to follow.



Do you think we could ask Martin Sheen if he'd like to be President again? I'd rather have the guy with the MS than what we've got now on either side. Heck, we did pretty well with the guy in wheelchair. Oooops, no politics. Sorry. I'll be viewing Hillary and Jackie this week and will add some comments later.

Of course, these diseases are always good ones to flare up just when the story needs a push.

I'd like to close with a bit of dialogue from the film, this being said by Stephanie to her doctor.

"Sitting there year after year listening to miserable people like me tell you how the world does destroy them. Have you ever once felt anything like the pain they feel? All the despair, all the fear? You make your living from their suffering and you don't understand a shred of it. Anyone of us is more qualified to speak than you because we have been there. We're still there."

AKA-If you ain't got it, you don't get it. Other films? or TV shows?

The Five Worst Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade 

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

Mistake #1: Not immediately making long-term financial plans.

I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now. I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that.

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.

Mistake #2: Not immediately looking into more accessible housing.

I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.

Mistake #3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am. I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.

Mistake #4: Not taking people up on their offers to help.

My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.

Mistake #5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.

BOTTOM LINE: You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly.

The Five Best Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs 

Hands down, blogging is the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there or try to have anything published.

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift.

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you.

Best Thing #2: I acknowledge what my body is telling me. 

Me? Listen to my body?!? Hahahahahahahaha. The only thing I ever listened to was the voice in my head that ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing. And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.

Best Thing # 3: My “overbed” table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me. What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

It has a tilt top side for my laptop, a solid side for books, cups, plates, etc., and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

Whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually spilling. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing #5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of “Best Things” list? Having MS certainly isn’t the best of anything.

I resisted the MS label for a long, long time. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me, it was damaging when I wasn’t taking care of myself or accepting help because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you disregard it. By admitting I have it, I am free to take better care of myself.

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)


This concludes the 118th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 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, July 17, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #103

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

Mothers, Love MS, Job Accommodations

Clinging

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.

~~~~~~~~~~

It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

Death of a mother is the first sorrow wept without her

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much. 

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

Ask an MS Navigator: What are job accommodations and how do I get one?

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation.  You can request reasonable accommodation under the ADA if:

• You work for an ADA-covered employer
• You are “qualified” to do the job; AND
• You are a person with a disability as defined by the ADA.n>

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:

1. You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
2. Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

• How is MS affecting your job, potential job, or application process?
• Why are you requesting accommodations?
• What accommodations or changes to your work will be effective?
• What information will you need to provide to your employer (or potential employer)?
• When should you speak with your employer (or potential employer)?
• Who should you involve in the conversation?
• How should you follow-up on your request?
• What are your rights if things go wrong?

These resources can provide more help and information:

• The Win-Win Approach to Reasonable Accommodations
• ADA - Your Employment Rights as an Individual With a Disability
• Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
• SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.


This concludes the 103rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 22, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 20, 2011.

Thank you.

Comments for this post.