Carnival of MS Bloggers #134

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

Ignorance is Bliss
by Alison of Beauty and meaning in a broken world

When I was 28 I was living up a steep flight of stairs, and I noticed that my one leg was weaker than the other. It carried on for a while so I went to the doctor to have it checked out. The doctor looked puzzled and told me that if it carried on she would like to have me tested for MS. Well, I was horrified and felt that she must be a terrible doctor, rather than thinking that it may be true. For of course I could never have MS, not me! The obvious course of action for me was to never see her again }: (

I then forgot all about it.

Well of course I was wrong and she was right, but in some ways I am glad that I didn't know until my 40's as there was not much that could have been done back then and it saved me a lot of anxiety. I didn't have many problems, mainly tiredness. I found it hard to ski or skate but I just thought I was unco-ordinated and it wasn't a problem. I also suspected that I had a problem with my immune system, but put it down to having had a bad case of mono as a teenager.

Now MS is affecting many things and I have come to terms that this has happened to me. But I am glad that I had less to worry about and that I was able to tackle some other tough things while oblivious to the time bomb that was ticking away. I do feel for those that have know for much longer and have had worse symptoms than me. MS can make life such a struggle and I know that I have been spared from something that could have been much more difficult.

 

This concludes the 134th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 14, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 12, 2013.

Comments for this post.

Carnival of MS Bloggers #120

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

The Future with MS and Jello Legs

"Am I going to die?" well yes, but probably not today....

by Jamie at Newly Diagnosed with MS

Being newly diagnosed with Multiple Sclerosis is scary business.

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible. 

One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”  Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle.

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs.

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.

• Make healthy menu choices; avoid high fat, high sugar foods.

• Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.

• Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!

• Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!?  It is doing its job!  Let it work!

So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!

Curse or Blessing? 

by CJ at my MonSter stories

I don't think it's wrong to ask "Why?". I don't ask "Why me?". Sometimes it's painful and difficult, but I try to look for the positive or the good, or at least a life lesson, in the seemingly "bad" things that are always happening to me or those I love. Struggles, trials, pain, difficulties, rejection, betrayals, illnesses, tragedies, heartaches...all these have had a major role in making me the person I am today. Some of the things I've been taught or made stronger in include unconditional love, compassion, mercy, grace, kindness, patience, self-control, endurance, discernment, contentment, joy, gentleness....wow!, as I write this I just realized...a lot of the "fruit of the Spirit"!

Much of my thinking on the subject of common human struggles has been written about in songs, and as music speaks to me and for me in so many ways, certain songs quickly come to mind, including this one that I would like to share:

( © Post by CJ ~ please do not copy)

Jello Flavors

by Janie at PasstheMSplease 

I got up and walked across the floor. It may not sound like much, but if you’ve ever tried that with Jello legs, you know how awesome it is. Believe me, when you have Jello legs you don’t want to do this…….the floor is very hard when you hit it.

I have also tried to get up with NO legs. That is also a no-no. When you try to stand up and there seems to be no muscles in your legs, you don’t get very far…...well, actually you do…..but it is not in the direction you wanted to go.

Those of us with MS go through a lot of phases with different parts of our bodies. My legs are one part of me that is so unpredictable. Some days I can walk fairly well. I bump into the wall and the furniture, but I usually get where I am headed. Other days, I sit in the recliner or lie on the sofa because my legs won’t go where I want them to. Some days, I am blessed to get out of bed because my legs won’t hold me up.

I usually use a cane to walk out in public. Open areas scare me. There is nothing to hold to and if I start to fall, there is only one way I’m going. I really don’t like the cane because I don’t feel that it gives me the support that holding on to my husband does. Most of the time, I am holding on to his shirt, his hand or the back of his pants at the waist. This seems to work for both of us and makes me feel more secure.

My husband is trying to talk me into getting a walker with a seat and a storage area. Many times when we have been shopping, I have wished I had one. I could just turn it around and rest for a moment on the seat. It is a hard decision for me to make because it means that I probably NEED it rather than just wanting it. I guess we all hate to think we are getting to that point and fight it as long as possible.

I am thankful that there are these aids available to most of us. We have a Hospice store nearby and can often get things there without spending so much. Unfortunately, things are not always there when we need them and we end up paying ridiculous amounts of money at a drug store or online for something that really should not cost that much. For many of us who are not on Medicare or have not been approved for disability, these costs are out of reach and we do without.

I used to have a recipe for a lime Jello dessert bar. It was fabulous! I wish I could find it……….I like that use of Jello much better!!

This concludes the 120th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 16, 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, August 14, 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 #112

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

Acceptance: Anger, Uncertainty, and Murphy's Law

Get Mad, Get Really Mad 

by msrecess  

“That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.

As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her ”that’s so annoying, Mom.”  And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck.  Taking the MS out of the equation.  I chimed in with her frustration and you could hear how frustrated I was for her in my voice.  Strangely enough, I think it helped.  In that moment I was on her side.  I wasn’t saying you should do this, you should try this, Mom it could be worse.  Instead I was on her side and I was mad at MS for her.  I was mad at life for her.

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you.  Show you that you’re not alone and your feelings are justified.  As a self proclaimed ”problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs.  Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them.  Without knowing this you actually help them more by not trying to fix their problem than fixing it.

So today I got mad at MS.  I got mad with Mom.  We chimed in together about how this is so annoying.  How much this sucks.  How Mom just can’t win.  It felt good.

Lesson learned: I think I will get mad at MS more often.

I Want to Scream 

by msrecess 

I feel overwhelmed. I feel frustrated. I feel upset. I feel mad. I feel hurt.  I feel so many things that my initial reaction to them is to ignore them.  I like to think I am pretty good at dealing with problems head on but this one won’t go away.  There is also no end in sight.  It’s a problem that I can’t discuss with many people nor do I want to discuss it with many people.  My mom has MS and it sucks.  It absolutely sucks.  I can’t get a handle on it.  I can’t.  I am admitting it.  I don’t even know where to begin to get a handle on it because it is constantly changing.  There are new symptoms, new emotions, new issues to tackle, constantly new.  They also aren’t my symptoms.  They also aren’t symptoms I totally understand.  They are new terms and phrases.   MS also brings decisions that aren’t mine to make.  They are Mom’s to make.  I have no control over a situation that is infiltrating every ounce of my life.  My lack of knowing what to do is driving me crazy.  I literally sit as my head fills with thoughts and have no idea what to do.  I just want to curl back into my shell and do nothing.  I just want this to go away. I just want to scream.

I Feel the Earth...Move... 

by CJ of my MonSter Stories

Today was one of "those" days - when it seems as though someone might be sticking a probe in random areas of my brain and saying "Watch what happens when I do this!"  It was a very active day for what my neurologist calls "paresthesias", odd sensory disruptions that include tingling sensations and numbness, feelings of vibrations and/or electrical sensations in one or more body parts or my entire body, reduced sensation or heightened sensation.

At times, walking was difficult due to the intermittent numbness of the front part of my right foot combined with the sensation that I was stepping on golf balls.  Because of tingling and incoordination, I couldn't get my thumb and fingers working well enough to  pick up the dime and nickel to use for the parking meter.  Talking on the telephone was a problem because I was getting a shrill sound coming and going in my left ear and then my hearing would be diminished for several minutes at a time.

Sometimes the vibrations were so noticeable that I watched to see if other folks would say anything because I was sure we must be having an earthquake!  While sitting in a chair it felt as if the floor were vibrating beneath my feet and I could feel the sensation go through my body.  I was certain that everyone else had to be experiencing it too.

While preparing for bed, I was standing in the bathroom brushing my teeth.  Suddenly I felt the familiar rush of fatigue and weakness wash over me and it felt as if my entire body, to the core, had turned to Jell-O.  I've learned that it can happen at anytime, regardless of my level of activity, and there is nothing I can do to prevent it, fight it, or stop it.  I must lie down and do nothing...and so...I am.....

(Reposted by permission © Post by CJ Taylor.  Photo from NASA)

Grocery Shopping with MS Meets Murphy’s Law 

by Dave of Dave's ActiveMSers Blog 

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space.

Thanks, Murph, sometimes you aren’t so bad after all.


This concludes the 112th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 26, 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, April 24, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #100

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

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

Telling my Mom

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

If you could see past disability

by Mary K. Mennenga

To see the person

Who isn't willing to quit or given up

On living life, hope and love

Life is about

Making the most out of what I've got to work with

It's not about what I can no longer do

Instead it's learning new ways of working within the limitations

Living life has brought to all of us

Pride is a force that will need to be dealt with

It's one of the things that can defeat anyone

Remember I'm are still in control of my choices

Will I make mistakes of course that's how most learning gets done!

All I ask is your understanding that

If the reason you're helping is because you think you have to?

That kind of support feels more like pity to me

Instead of being something you want to do with me

Honestly pity is just another form of guilt

That has nothing to do with me

Walk This Way

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

connection…

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.

wow.

need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

Living Fiercely

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."


This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 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, November 8, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #91

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

Dancing, Empowerment, Walking, Spasticity, Acceptance

Exercise and Empowerment
by Taylor of Dancing With Multiple Sclerosis

Lately I have been trying to find ways to empower myself. I know, that sounds like a big pot of swiss, gouda and cheddar- SUPER CHEESY. But I honestly do feel that with an unpredictable disease like M.S, we should take every opportunity we can to feel like we have some sort of control over our lives.

I have found that the best way for me to feel like I have some sort of say in my disease is by developing a plan, and sticking to it every day. For me, that involves a healthy diet along with an exercise plan. Also, setting aside time for stress-busting meditation, and taking the medicines and supplements that I know will help me. Of these things, exercising daily is most certainly the hardest.

A little background on me: I grew up dancing and dance has always been my passion. I danced all though college and even through bouts of optic neuritis and neuropathy. I was also an avid runner, with four marathons under my belt and I worked as a personal trainer for years. Last year, the most debilitating fatigue I have ever experienced hit me. Getting though a 3 hour rehearsal or a 90 min dance class would lay me flat on my back for a good day following. I would also start visibly shaking and get very weak and dizzy after a dance class (literally crawling to the wall one time in a modern dance class. Humiliating) I realized that I had to adapt every workout for how I felt that day, week, month. This has been one of the hardest things for me to cope with. When I hear runners run by my kitchen window, the desire to get out there and feel the brisk morning air chasing me is almost too much. But I cant. At least not every day.

I've learned that if I set aside 30 min a day to exercise- I feel 20x better than when I make excuses not to. Some days I only have it in me to stretch and do very gentle yoga. Other times I have been able to run, cycle and even dance. All it takes is the MENTAL strength to say 'now I am exercising' and start. Of course, there are times when I have overdone it and spent the next day on the couch. But exercising actually helps me to understand my limits and know how to operate in a way that I move and stay as active as possible without making myself sick. And *yeay!* for endorphins! Nothing beats the great flood of 'happy' that comes after a nice workout.

Exercising is one of the ways I have found to empower myself. It reminds me that I have strength even if it's just the mental strength to TRY exercising. It reminds me that my body is this physical, powerful thing and that I am connected to it in a positive way.

Anyhow, I suppose I am on this subject because I feel so great right now- and the only thing that has changed is that I have gotten back on track with my diet and exercising. I am still dealing with the same symptoms I've had for a month (burning legs, numb face, bouts of trigeminal neuralgia) but I am feeling so empowered right now. I feel like I am FIGHTING M.S again, and not just sitting back and suffering. It's a great feeling.

.

What I Miss the Most
by S.S.O. from Multiple Sclerosis & Me

the ability to dance!

I'm talkin bout "bussin ah wine (the Trini dance for soca - gyrating ur hips to the music with or without a partner(s))", ballroom dancing, any kind of dance.  I've mentioned before that i cyah wine no more - wining with a cane and a stiff left leg  (my left side is the problem side - it's weaker, the left leg is generally the stiff one (it always wants to be straight)) is not pretty and does not feel right, so wining is out of the question.  All i can do these days is listen to the music, sway side to side (a slight mini wine if u will) and use my cane as a prop to stomp to the beat and in fact Saturday nite, i used it as my flag/rag and was wavin it in the air :-) - UGH!!!

I used to dance when i was growing up - modern dance - and always loved it.  As i got older i wanted to learn how to tango, so bout 5 years ago, i signed up with a ballroom dancing school.  I was quite good, if i do say so myself, but had to drop out when i realized that i would need to rob a bank to continue.  I was able to afford the lessons at first, but as i advanced and got to the level where i could perform at exhibitions and such, the cost became too much and even though i might have gotten away without robbing the bank the 1st year - beyond that there was no telling.  So instead of risking jail for a hobby, i decided to let it go.  For the short time that i did it, i enjoyed myself thoroughly and as i mentioned, i was quite good.

Nowadays when i'm at a fete or see people dancing anywhere in general, i feel a tug at the heartstrings - it saddens me just a little.  When we're partying, most of my friends will come and take a wine on my chair or me (wish i had a picture to share) - just depending on the type of chair :-) and i love them for that - but it's just not quite the same.

Spasticity Poem I

by Mary of Travelogue for the Universe

Quit pulling my leg,
You rowdy MonSter,
Couldn’t sleep past 4
Again.

Never knew what spasms were
When patients told me,

Hard to see,

Calf goes flat,



The Pain,

A Whimper,


A Grimace,
A bite of the tongue,

A face washed of smiles.

First goes flat, then gnarly, the muscles contract

In a schizophrenic symphony,

Discordant,

All wrong.

Rub my knee, flex my foot,

Jump out of bed, stomp like a weird dance,

Go away you spasms and pain,


Die you MonSter,
Die.

When to Ask For a Steroid Infusion

by Matt of Multiple Sclerosis Daily News

This morning I called the hospital to ask for a steroid infusion. My walking is very clunky and my hands feel very funky and I don't want to wait until it gets real bad to do something. For the past few weeks I've had a hunch I was going through an exacerbation. I didn't get in for an infusion this evening, so maybe tomorrow.

But now I'm not sure if I really need it. My walking is bad, but I can still walk. In some ways it feel better than last week. Tonight I walked a half a block and felt okay, so no infusion, right? I feel better than I did this morning, but it took me forever to get out of bed, which is why I called the hospital in the first place.

I'm confused, when should I get a steroid infusion? Is it only for dire emergencies or is it also for impending potential emergencies? I don't want to be "that patient" but right now I am, I'm potenitally wasting people's time. And I've done this before. I asked for a steroid infusion and backed out at the last minute six months ago.

I swear I'm not normally like this but with MS I'm paranoid. I waited until I couldn't walk at all to get my diagnosis, I don't want to do that again. So now I'm trapped in this bipolar situation where the sky is falling and then everything's okay again.

The thing about MS disability is you get used to it. One day you don't walk very well, the next day you figure out how to walk despite whatever went wrong using different muscles. Then you don't feel so bad. This is why I'm going on Tysabri, because I am the king of this. I work around new disabilities and then they don't seem so bad, but if you look at my best a year ago to my best today it doesn't look so good. I'm getting worse over time but I'm learning to deal with it, which is good for me, but it indicates that a new treatment is needed.

That still leaves the question, when should I get a steroid infusion. I have no idea. I really don't, and I hate wasting people's time.

Errands and Walking

from Judy of Peace Be With You

From force of habit
I grabbed my cane forgetting
distances are hard.

Walk, walk, walk some more
my walker left in the car
what was I thinking?

Errand to errand
I slogged on deeply fatigued
until I couldn’t. 

Stages

from Angela of Gracie's Mum: a Story of a Mum with MS

We’ve all heard about the Five Stages of Grief. You know, Denial, Anger, Bargaining, Depression and Acceptance. This model is applied to many different situations in life that involve some form of loss. Death, Divorce or Illness fall among the most popular, but there are of course many more situations in which one is forced to rally through the 5 stages. I am seeing my good friend go through this with her recent separation from her husband. Right now, she is fighting it out somewhere between Anger and Acceptance. I watched my mother in law go through all of these stages when my father in law finally succumbed to cancer. I, myself, have gone through these stages. I spent the most time on both Anger and Acceptance.

Which is where I find myself now. On the final stage, only, I wonder, why there aren’t varying degrees of Acceptance, like what happens afterward?

So, let’s recap my 5 stages: Denial, wasn’t one I spent too much time on, I was more in shock than anything else. I did have some moments of ‘this can’t be happening to me’ but they were fleeting because Anger is one dominant bitch that insists on riding ‘shotgun’ to no one. I was angry for being in the hospital, I was angry over the flip-floping diagnosis that encouraged the repeating of the first 2 steps an inhumane amount of times, I was angry because I was in the hospital missing out on Grace, Steve and my career, my students. I was angry that this was the hand I was dealt. I never Bargained, not for my life when I thought it was cancer, and not for my life when I knew it was MS. Who does an agnostic bargain with anyway? Depression, well, that’s a tough one. Of course I was down. I was stuck in the world’s, or at least this country’s, most disgusting hospital, who wouldn’t be depressed? I really feel though that the most time at any stage was spent on Acceptance. Because, there just isn’t any other way to live.

Adapt or Die right?

But, to say, ‘ok, alright, I have MS’ is totally different to saying ‘ok, alright, I have MS’ and actually living with MS. Excuse me, I mean, saying ‘ok, alright, I have MS’ and living in spite of MS. Yes, spite should be a stage of Grief for all of us that go on living to show life who really is in charge here. To show that although life may have handed us a crappy hand that we still go on to win the pot, still go on and all the while we’re flipping life the bird.

Because we have not only accepted our fate, but we’re going to rock it out while we do it.

I have only recently entered this ‘off the beaten path’ to Acceptance. Up until now, I accepted my life as a life that included MS. But I was very conscious of how exactly others would accept me with MS.

While in the Rehabilitation hospital I refused visitors other than Steve, Grace and my parents. I didn’t want anyone, under any circumstances, seeing me in a wheelchair, or trying, struggling to try, to walk. I also didn’t want anyone seeing me in that place because I’m sure that there would have been a few of my friends and family that would have not known better than to blow up on some unassuming nurse about why that place is not condemned. And that would have just been embarrassing. For everyone.

The first time I saw anyone during that period of time was at Chris and Emma’s wedding. I was still wearing the hospital bracelet and was out on a weekend pass. Wearing an AFO leg brace and using a cane with a wheelchair on backup, I allowed the world to see the MS me. I was terrified. At a pre-wedding get together I heard Emma tell Chris how at first she didn’t even know I was there until she heard me talk, and how I sounded so normal. I cried to myself hard that night in bed. And although I know that Emma was reacting as anyone would react to being shut out of a person’s life while they recover from paralysis brought on by a mystifying MS attack that left me almost senseless and in need of a brain biopsy. Without any contact with me there was no way she wouldn’t have thought otherwise. I get it. But it made me realize that people had an expectation. An expectation for the unexpected. There is no manual on how to prepare for that.

So I avoided it. Or tried hard to ignore it because sometimes it was unavoidable. Like when I still didn’t have my license back and relied on neighbours Lenna and Jenna to take me to physiotherapy appointments or for blood work. BBQ’s were tough because almost every deck has stairs to get to the dining area, so you have to go through the house and people you don’t know or haven’t seen in a very long time ask you what happened to you leg? Did you break it? Sprain it? MS? Wow, really? And then I’m MS chick for an hour and it’s hard to hide it while you explain the entire Journey Through Hell. And then you hear all the stories about the so and so’s they know who have or had MS and how they are either so normal you can’t tell or they died. I’m serious. And then of course there is the discussions focused on whether or not I’m going to Bulgaria for the ‘cure’. And then the ensuing explanation about CCSVI and my stance on the topic etc etc etc.

My saving grace was when I graduated from AFO and cane, to just cane, to nothing. And then it was super easy to hide it. And thus another stage of Acceptance: Pretending everything is normal.

Pretending everything is normal and denial are very different. I had accepted the diagnosis, the pain, the fatigue, the needles, the pills, the B.S. But I hid it because I didn’t want the focus of my life to be this disease. I wanted desperately to be able to seem normal just like them so that no one had to know about the MS thing. So I avoided the MS community completely for months because when you are part of a community you can’t get away with pretending you are not what you are that made you part of that community. I avoided eye contact with anyone in a wheelchair or with a cane. I was not like them. I had been like them, but I wasn’t anymore.

Then, I had a relapse.

I was scared, petrified actually, that the jig was up and my cover was blown and that the entire world saw me as a fraud. And then, through all the stages I went through that particular time while recovering from that flare up, I realized that I was kidding myself.

I threw myself out there. And, I screamed to the world that I HAVE MS. I have it, and this is what I’m doing in spite of it all: I’m living!

To live with MS, to be a wife with MS, to be a mum with MS means pretty much the same to me as to anyone else, you live within the confines of your limitations until they are no longer limitations or you move the hell on. Oh, as life goes on and the disease progresses, I’ll still worry about being the mum with the cane and what Grace’s friends may or may not think of me or her. Oh, I’ll still worry about being able to dance at her wedding. I’ll still worry that Steve does way too much around here and I’ll let guilt take over from time to time about not being the household-keeper-upper that I want to be. But I won’t exclude an entire group of people from my world because they too were handed a crappy hand in life and to see them is just too painful for me.

No, because I have too much to offer their world and vice versa.

Oh, it’s on.

Acceptance is a great stage, but allowing yourself to see the possibilities that acceptance brings you are even better.

And the possibilities are endless.

Rock on. MS or not. Happy Hump Day!


This concludes the 91st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 14, 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, July 12, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #85

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

Dreams, Joy, Love

THIS IS A DREAM I HAD

by Mary of It is what it is, until it isn't what it once was

I found myself standing in a heavy fog. Trying to see through it I looked down at my feet, at first I couldn't see them. As the fog started to dissipate, I found myself standing on grass. I started looking up from my feet and seeing a field of grass. The fog was thinning I still couldn't see very far, but I wasn't afraid. Instead I was amazed at how peaceful and calm I felt.

I saw someone coming towards me, it was Rusty the dog I found when I was a child. As he came closer it looked as if he had the same ball he had when he found me. Running right behind him was Honey girl without a rock that had been her trade mark in life. It was odd but not surprising that we understood each other. We knew it wasn't my time to be with them yet, that I was just visiting.

As we were greeting each other, I noticed they both had all their teeth. I knew they always have toys, balls and someone to play with. They were so happy, we started running, playing catch and keep-away, Shadow showed up and we started to wrestle. Rusty was gnawing on my elbow, as Shadow was running around us, trying to distract Honey girl, as she was barking at me as I tried to grab her paws. Shadow joined us as it turned into a pet me, rub my belly, scratch my ear. With only having two hands the one not getting attention, was giving me kisses then all three were licking my face. I rolled around until I could get up and started running, then I turned and started chasing them. As we were playing I noticed that more dogs had joined in the fun. Some I knew very well, others knew me better than I knew them, but I remembered them all, it was nice to see them all again. Most didn't stay long but some did.

We came upon a lake that was clear and not cold, without a thought we all ran in with a big splash. As we came out of the water after swimming and playing. We went to lay in the shade of a large tree, I didn't notice before, but I was glad it was there. Lying there and realizing we hadn't stopped, because of pain or fatigue, it was so peaceful and quiet.

Then I heard a Loon's call, an eagle's cry; I began hearing all the sounds of the animals I have listened to throughout my life. Sitting up and looking around it was a beautiful scene. The sky was so blue, with puffs of small white clouds. The birds filled the sky; there were eagles, hawks and songbirds of all colors, shape and size. The sounds filled the air. I closed my eyes, as it became the most beautiful song I have ever heard. It filled my heart with joy and peace and I knew I would never forget how it fed my soul.

Rusty lifted my arm with his nose, as I started petting him opening my eyes, to see in the tree was Tony the squirrel. I had helped after he had fallen from the neighbor's house. He came down and laid across my shoulders. As I looked out at the lake and the field of grass and seeing all the animals I have watched throughout my life. I felt them welcoming me to stay awhile longer.

The cat's came over and started teasing the dog's. Standing up with Tony on my shoulder, we started playing again. It was so nice being with them all again running, laughing and playing. After a time most had gone, Tony climbed down off my shoulder and started walking away the fog was starting to roll back in. I heard a dog whine so softly and saw Rusty walk into the fog. The dream was starting to fade, I didn't want it to end. Calling Honey girl three more times as she walked towards the fog. She finally turned and smiled at me, I realized it was time to go.

The whining got louder waking slowly and calling Grey girl. As she came to the side of the bed, I tried getting out of bed but this is the real world and I still have M.S., so giving Grey girl hugs and petting her until I was able to get myself out of bed. The dream was gone, but the love will always be with me.

It was the best sleep I had in years, waking with so little pain for the first time. Knowing we will be whole again but until then, I'll settle for visiting them in my dreams.

Looking back to Look forward

from Nadja of Living! with MS 

Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)

I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.

One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.

My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.

Joy is often about valuing what you have, not morning what you have lost or could lose.

The Perfect Love

from Suzanne of LIVING - Life With MS

We waste time looking for the perfect lover instead of creating the perfect love. -Tom Robbins

In December of last year I was in my office and heard this *SPLAT* on my office window. I didn’t want to look. I knew what it was. But, I did look and there on the ground in the rocks was a small grayish bird alternating between breathing heavy and panting with its beak cracked open. Other than the breathing this precious little creature was not moving--at all. It was 20 degrees Fahrenheit outside and I figured in minutes, if it stayed there, not moving, in the freezing cold, it would be dead. I gathered up a shoe box and put a blue hand towel in the bottom of it for warmth.

I headed around the building and halfway around, there at the front door, was another little bird sitting quietly against the building, protected from the wind. It wasn’t the same bird I saw out the window; this one was a little thinner. I tiptoed in to get a closer look and I realized this bird must be the mate to the injured bird so I scooped him up in my bare hands and placed him gently in the uncovered shoebox and he just stayed there, quiet and still. I named him Reginald.

I went to the back of the building where I found the injured bird sitting very still-panting. I immediately scooped her up and placed her in the shoebox, next to her mate. I named her Chloe.

He maneuvered himself next to her, hopping sideways in the box.

I took them inside (I know, I’m lucky they didn’t take off) and let them warm up a bit and then I went out in the garage, left the door open and after a few minutes he flew out the door and went and perched himself in the small tree just off to the left. She still was not moving much but I took her outside and placed the box on the grass and just like that she took off and flew to him. I have to say, it was amazing and I felt like the “Bird Whisperer.”

It made me think—would I do the same? I’m not sure. I’d like to think I would but how can I really be sure. Recently, I told my husband, “You are the love I thought I would never have.” And I meant it. I can’t imagine, nor do I want to, a different kind of love or love with another person. So, yes, I would stay—I am sure.

A marriage can be weakened or strengthened by MS-by any chronic illness for that matter. There are all sorts of statistics about divorce and chronic illness and overall when the man has the illness the divorce rate is lower. I also read that the longer a couple is married the more likely they will stay together after the diagnosis of chronic illness.

We've been married for 16+ years. Shortly after my MS diagnosis I began to wonder if my husband would leave me. Wouldn’t he be better off without me? Why would he stay with someone who is flawed with illness when he could share his life with someone healthy?

I will have MS for the rest of my life (probably) and it will always affect our relationship in some way. And yet, he stays.

Is this the perfect love? I think what we have is a love we created over time that is perfect--for us.

Start creating your perfect love—stop wasting time looking for it. ~SMR 

This concludes the 85th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 21, 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, April 19, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #67

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

Professionals, Patients, and the Lottery

Leap of Faith 

by Judy of Peace Be With You

all over the world
committed professionals
looking for a cure

in a leap of faith,
though unsure of benefits,
patients take their shots

uncharted pathways
we explore together
hoping for the best

A Letter to Patients With Chronic Disease

by Dr. Rob at Musings of a Distractible Mind

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,
Dr. Rob

[Although not an MS blogger, I thought that Dr. Rob's post was extremely important and applicable for many of us in the MS community.  If you haven't discovered Dr. Rob's blog, I highly recommend it.]

The Here and Now

by Judy of Peace Be With You

Let us be honest.
None of us would have chosen
to contract MS.

To be practical,
what is the point in asking
why this thing happened?

The pressing question,
how to deal with what we have
in the here and now.

Why Me? Well, Why Not Me?

by The Wheelchair Kamikaze

Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.



This concludes the 67th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 29, 2010. 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 27, 2010.

Thank you.

Comments for this post.