Carnival of MS Bloggers #122

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

Sleep Disorders, MS, and Multipurpose Sticks

A tale of two stickies 

from Thomas of BiPolar, MS and still as handsome as ever 

Take a look at this picture:

On the left you see a very dilapidated golf club, a one iron of some ancient make probably used by the Morris clan (golf joke) and left in a garage sale.  The paint wasn't on there originally.  Just an added touch to being stuck in a garage by a guy who found that he could not play golf, but could hit a ball with a stick and follow it around.  I just didn't feel the need to pay some stranger for the use of their land to hit the little ball and follow it around privileges.

The club has a MS use though.  A few times a week I grab the club, stand in the grass, assume the position, and take a good swing.  If I remain standing, its a good day.  If I come down goofy or start to tumble, this is not a good day and I should be careful.  So while my one iron and its friends in the bag sitting in my garage may never see a golf course again, they do remind me of another day when I could freely play a sport I sucked at.

Now as for the stick in the middle of the photo, that's my new walking stick.  On Friday, Jackie and I went to the Southern Vermont Craft Fair in Manchester, Vermont.  This has been a tradition for many years and we'd stay at local B & B's and go to the Craft Fair at the rolling lawns of Hildene, the former home of Robert Todd Lincoln and his family.  Highly recommended. Well, the bed and breakfasts closed.  And this year the Craft Fair moved to the other side of Manchester.  Ch-ch-ch-ch-changes, said Mr. Bowie.

Time to turn and face the strain.  The Craft Fair is in the midst of a field, a Vermont field, meaning rocks and little gullies and tiny holes, and if you have any problem with coordination, and I believe lots of MSers do, here was a challenge.  If I held my wife's hand I could move pretty well, going from booth to booth, but the moment she stopped to look at jewelry or whatever and I continued on my own, any quick turn or "excuse me" step out of the way might send me reeling into any booth anywhere, and I'd find myself staring at a piece of crockery that would only set me back three hundred bucks.  I'd mumble some excuse like - "Astounding work. I must remind the Queen." - and move along, find Jackie and head out.

We got a drink and hit the food tent where free samples were distributed.  My favorite was the rye whiskey (butterscotch in a paper shot cup).  When we left the food tent, we headed out to the tents off to themselves on the other side of the field.  There was the temporary abode of Debi Hitter, purveyor of custom made walking sticks (Eagle Scout sticks a specialty).  I ended up with one of the those sticks, and used it successfully to move around the craft with slightly more balance.  The stick also opens up new possibilities for career options:

1. Religious leader  (i.e. Moses) - see the staff in his right hand - by the way, the statue is in Washington Park in Albany NY, and this shot was taken during the Tulip Festival held each May.  Let's see, I might  ask my former employer to "let my people go", but they would, and then try and run the Department of Social Services with trained monkeys  (a lot easier to pass out bananas than support).  And where would I lead my people anyway? Across the street for lunch? The parking lot?

2. Robin Hood - there's that scene in every Robin Hood movie and parody from Mel Brooks to Daffy Duck where Robin and Little John parry with quarterstaffs, like this.  See maybe I could become the local Jedi Knight for the Luther Forest area.  There must be an opening somewhere.  I know my first enemy, the chipmunks in the back yard. 


I figure a swing or two with my new Jedi stick (I can make the noises) and those little buggers will head off into the Endor forests.

3. Join one of those German groups with the leiderhosen, and the sticks with the jingle bells on them, but I'd probably be asleep in my chair by the second song, so never mind.

I'll try to come up with other stick uses (open for suggestions).  Right now I'll use it on tough walking days.  It's better than a wheelchair.  It's a reminder that tough days may be ahead, but I can handle them in style.  The lady who made the stick is also interested in providing others to the MS group.

From the update pile: I've got appointments with both my new psychiatrist and neuro this month, and just need to step away from my old psych (who I noticed in the newspaper today didn't pay his taxes and got slapped by the Feds), and do my paperwork to transfer stuff. Best of luck to my old neuro as she moves to New Jersey.  I found that out through a meeting of the minds of the two people who showed up at the support group Thursday.  I could not have met a more gracious lady, and I hope the group works out.

How to Sleep with MS 

from The Girl With MS

Why can't we sleep? There is no real reason other than MS as to why I have sleep issues, but it's amazing how I can mess myself up!

Here I am in the beautiful Eastern Sierras listening to Bishop Creek as it riffles by below the cabin. My current view:



On vacation but with a few minor projects and tasks to tend. But not enough to keep me awake all morning. The first night I was exhausted and fell asleep at 9pm when my head hit the pillow, awaking at 4am, which did constitute seven hours of sleep. But I didn't want to be awake at 4am.

So last night I aimed to stay up later thinking I could get seven hours and wake at a reasonable time. Now as the day progressed, after some time in the warm Bishop sun, some fly fishing and some creative cooking, I thought to myself, you are at 8,500' altitude, "Go fill up your water glass". Yes, I thought this often, every time I opened another beer.

I even thought of the magnesium supplement, magneleveux, in my bag, as I opened another beer.

Daydreaming, sketching, visualizing, I had a fun night, as I opened another beer.

Exactly what NOT to do with MS!

Sure, I stayed up until midnight, then woke up at 4:38am. Bing! And I'm awake. The need to pee and the incessant leg spasticity kept me squirming all morning long. The 42 degrees winding through the window bringing with it the sound of the creek was my saving grace. Ugh. I know better. I did take 1/2 a klonopin and a melatonin before going to bed. And another half of klonopin in am when couldn't fall back to sleep.

Three glasses of water later, a banana, magnalevure and some Shen Trition, and this Girl with MS is finally feeling a little better.

What I could have done:

• Enjoyed the great healthy dinner we had (micro greens, salmon, veggies)
• Dry brushed my legs
• Took a not to hot bath
• Read a book
• Wrote in blog

Etc....

Yes, these are all better choices then the one I made. So, live and learn. Let go and let God as they say.

This all inspired me to do some researching on sleep and MS. Here is some of what I found:

This is a great summary from WebMD of what can cause folks with MS to have restless sleep: Multiple Sclerosis and Sleep

Life aspects that can effect sleep patterns in those with MS:

• Stress
• Anxiety
• Eating
• Drinking
• Nutritional health
• Age
• Physical activity
• Mental activity
• Spasticity
• Depression

So, how do we deal with this sleep issue?

Time to change our habits!

Food suggestions:

Small bananas are good: (they still contain sugar so small is better before sleep)

"Combining the amino acid tryptophane with carbohydrates as well as calcium and magnesium can help your brain relax and your body nod off to sleep."

And the magic of oatmeal can make the difference of a more restful sleep pattern:

"Calcium has been proven to help the brain use and process tryptophan, while magensium, a natural sedative, acts as an "assistant" to calcium helping it to be absorbed into your system."

Check out more Foods to eat before bedtime from The Health Central Network

There are other things too. This is just a start!

There is Proof that sleep patterns affect MS!

If you've been having sleep issues and feeling more fatigued, there is proof that the two go hand in hand.

Check out this study: "Treatment of sleep disorders can improve fatigue and other clinical outcomes in MS."

“@MSBuzzNews: Multiple Sclerosis Research: Treatment of sleep problems reduces fatigue: Epub: Côté et al. Impact of sleep diso... http://t.co/f68LV6M8”

Ok kids. There is more to come on this and would like your thoughts but there's a high Sierra creek calling my name....

Sleep Disorders and Chronic Illness 

from Lisa Emrich of Brass and Ivory: Life With MS and RA

Sleep disorders, especially sleep apnea, can cause fatigue and increase the risk of cardiovascular disease.  Untreated sleep apnea can lead to depression, heart disease, diabetes, obesity, and excessive daytime sleepiness.  Stress hormones released during frequent drops in blood oxygen level caused by sleep apnea increase the risk of high blood pressure, heart attack, stroke, irregular heart beats (arrhythmias) and heart failure.  Excessive sleepiness can lead to fatal car crashes and accidents at work.

Sleep disorders may be under-diagnosed in both rheumatoid arthritis and multiple sclerosis, according to research.  For information regarding sleep disorders, including sleep apnea, and their connection with RA and MS, please read the following posts I wrote this week for HealthCentral.

Read:

• Sleep Apnea: Is RA Connected with Sleep Apnea? (Part One) 
• Sleep Apnea: How is it Diagnosed and Treated? (Part Two)
• Multiple Sclerosis and Sleep Disorders: Do You Suffer Fatigue and Daytime Sleepiness? (Part Three)

This concludes the 122nd edition of the Carnival.  (Apologies for the late posting.)  The next Carnival of MS Bloggers will be hosted here on September 13, 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, September 11, 2012.

Thank you.

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 #117

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

Disney World, Jack Osbourne, a Big of Luck, 
and Doctors Beyond Reproach?

Relenting and Renting
by Laura at Inside MyStory

Never do I want to be constrained to a wheelchair.  Yes, I know, neither do you.  None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine.  I took a trial run at it last week and came away with a renewed appreciation of being ambulatory.  It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family.  The thinking was being late in May, the weather would still be reasonable.  So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.

Heat sensitivity  is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs.  Keep me in that  type of  stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait  – step, lean,  drag, shuffle.  Repeat.   The hotter I am, the scarier the MonSter in me looks.

We planned on five days in the assorted parks and thought we had developed a reasonable game plan.  However we didn’t take into account the unusual early season crowds and did I happen to mention the heat?  The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on.  The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented.  A mere $12 a day and anyone can rent a  wheelchair for getting around the parks.  There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.

Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb.  My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing.  The height of the chair handles appear to be made for people who are less than 70 inches in stature.  My family is tall, and each one of them had to stoop slightly to push the handles.

I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own ass  around in a wheelchair, and I learned that is no longer a joke;  I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever.   But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing.  It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own.  I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too,  too,  too whatever.  This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.

People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty.  In a large, sun baked crowd, it is even worse.  I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid.  If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck  and especially the belt line?

It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park and she was not so excited with many of the rides we did manage to do.  But we made the best of it – we had our laughs, danced a bit to the music, and made our own fun and I appreciated the alone time with her. even though we were surrounded by thousands of other people.   Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences.  Being in a chair, albeit voluntarily and for a few short days, gave me  new perspective and renewed motivation to not relent to my MS.

Jack Osbourne Has MS

by the MS Blogosphere

Did you read the news or watch the TV interviews discussing the recent MS diagnosis of Jack Osbourne, son of Sharon and Ozzy Osbourne? More than 100 articles have been written and shared on websites since the public announcement was release the past Sunday evening.  The MS blogosphere has also discussed the news.  Here is a round-up of interesting posts:

• Jack Osbourne, Newly-Diagnosed with MS: Celebrity and Disease Awareness by Lisa Emrich at MultipleSclerosisCentral.com 
• Celebrities with MS: We Need More of Them by Mitch at Enjoying the Ride 
• Welcome to the Club, Jack Osbourne by Laura at Inside MyStory
• you've got more than money and sense, my friend by Swisslet 
• M.S. is B.S. by cubanrick at mylifeonMarS
• MS in the News by Jodi at Jodi Bean's Blog
• Adjust Your Underwear by Thanks: Management
• Osbourne's MS Discovery by Simeon at Suddenly MS
• Just Wondering and Jack Osbourne by Life Can Be Simple

The Full Story

by Judy at Peace Be With You

A good attitude,

success may depend on it.

So is being real.

I am no fool, see.

I know crap can just happen,

good person or not.

One can only make

the best of what life offers

and hope luck shows up.

Now Doesn't This Dunk Your Hat In The Creek.....

by Thomas of BiPolar, MS, and still as handsome as ever

OK, before I begin, take a look at this piece of information here. That's fine, I'll wait. HmmmmHmmmhmmmm. Oh, good. Now in the spirit of sharing, I'd like you to know that that guy is my psychiatrist. Or was. Or still might be. I'm not sure.

First, I freely admit that everyone is presumed innocent before proven guilty. However, I always did wonder why there was a very large amount of turnover in the office. Last few years have been tough for jobs, I am aware, so I did wonder why so many young ladies were in and out of the place, unless incompetence reigned. But basically I paid my co-pay, sat in the chair, filled out the forms, and met with either the Doctor, or one of his associates. Before the associates all disappeared.

Aside from possibly having a serial killer employed, and that's the reason they had to move to their new place because there were no spots left for the bodies to be buried, it did cause one to ponder. I see a lot of physicians because of my dual diagnosis (everyone needs a hobby) and it's more than likely that at each visit the same face would greet me and discharge me. Sometimes the face was attached to the same head. There was consistency.

But not at this psychiatrist's office.

Anyway, moving on, you may have noticed in the article that this particular doctor was called on the professional carpet for having "prescribed excessive levels of medication, failed to properly monitor patients and failed to maintain accurate records." These were the alleged charges.

(Read more: http://www.timesunion.com/local/article/Psychiatrist-faces-sex-counts-3628274.php)

Now, this Doctor and I have had no personal problems, as far as I can tell, in that we worked well on trying various medications to calm the bipolar, and adjust to the new challenges of brain lesions from MS. Working also with his associates, we had a good rapport, and the improvement could be visibly seen. And for those who might have looked, this is where the 5 Keys to Mental Health came from (and No. 5 is on its way). If something needed to be changed, it was changed immediately, or if something needed to be added, it was. And I have benefited and am grateful to the practice.

But still....should I go back there? Should I recommend the practice to others?

Everyone lives with their own delusions, even well trained doctors. Within each person is a golden nugget, a true clean soul that shines. It just gets covered with personal crap, and the jewel can not get its light through the mud and gunk of life. The person needs to clean that jewel themselves. And it takes time. This doctor may have some time soon.

Last night I started looking in my health insurance guidebook for another psychiatrist, one that was, literally, closer to home. I've been fortunate that I've had the same doctors pretty much for years, and haven't had to experience the constant shuffling many patients do. In fact, my regular physician retired the same day I did. But as far as I know, none of these folks had any of the issues that are being doled out to my psychiatrist.

So how to handle this? Consider what would you do if you found out a professional individual who helps you balance your disorder/illness/life has not exactly been a shining light to others? Forgive and continue? Forgive and move on? or just move on? I am fortunate that I can.


This concludes the 117th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 5, 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 3, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #109

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

Staying Upright

Depends

by Laura of Shine the Divine

tangled

caught on wires barbed

rusty

vines twist in the cold

sun

small hearts dangle

free

in a momentary breeze

tethered

or connected it all

depends

for the fence offers

support

a place to grow

home

perspective it seems is

everything

MS-behaving... A flare in symptoms began yesterday morning. I'm trying to look at this from a particular perspective... so much depends upon perspective! This has been the longest remission period I've had since 2009 ...almost three months of feeling pretty darn good with Gilenya. I am grateful for the reprieve. We'll see what the doctor says later today, I think she will want to see me and likely do an MRI. Maybe there won't be any new lesions, just an unexplainable reactivation of old ones. Life, I have learned, generally does not go as we plan, it is best to expect the unexpected, open to the possibility of blessings in every moment and wait for them to arrive. I watched the sunrise this morning, golden and glorious. An attitude of gratitude is amazingly healing! Also, the Michael Jackson Myoclonus MoonWalk thing my right leg does at times like this is propelling me forward, typically when this symptom starts up I can only move backward...I'm taking this as a good sign! (Honestly I do feel disappointed and frustrated too, but one can feel this, have a sense of humor and gratitude all at the same time. )

Falling ...

by Miss Chili's Hot Stuff

Yesterday, I fell. Outside. With help. Ow.
It was an hour or so away from my physical therapy appointment. Despite not having gone since, um, December ... after falling that time inside on their throw rug in front of the coat closet ... I sucked it up and decided that I was going to brave that evil throw rug, that it wasn't going to let me down again, ha HA!

So, I got dressed, covering up anything that might need to be covered in this Denmark cold. Brrrr... Did I say, 'Brrrr' already? It bears repeating, as it's f*€&ing cold here.

Once downstairs and out at the street -- which took some time, having to walk from our apartment building past a few more to get to the street -- I rang for a taxi. It didn't take long until one showed up, and the driver jumped out to assess -- maybe that needs a few more 'ass'es in it, and you'll see why -- the situation.

When he arrived, I'd been sitting on the seat of my wheeled walker thing, brakes on and all. I stood up and arranged myself, made sure my hat was on, double-checked that my mittens were still in the pouch attached to my wheelie thingie, and took off the brakes of the wheelie (well, if I have to call it anything, I suppose this will do ... just as long as I don't name it, as then you know that I'm toddling down the road to Crazy Town) so that I could cross over to the taxi, which was parked maybe three metres away.

The driver came over to help me, or at least I thought he did, and maybe he thought he did, too. He put his hands on my wheelie and started pulling and pushing it, faster than my feet could keep up. I wrestled it from his grip once, gathered myself and forged on ... only to have him put his hands on it again, to push it faster than I could keep up with. Almost to the edge of the first sidewalk, I figured that I had to keep on with it.

Between the first and the second sidewalks, there's gravel and dirt and such. I was trying to walk over it, and the driver was pulling me onwards, when ... I don't know exactly what happened, but I tripped or something, and I grabbed furiously for something to keep me upright, but ... it wasn't there, and I fell, partly on the wheelie, partly on the gravel.

There I was, the wheelie partly overturned and partly beneath me, and the taxi driver holding onto it still, saying something about how I needed to stand up straight. Fuck, if I could stand up straight to begin with, I wouldn't have to use this thing to help me walk!

I remember trying to stand, but something happened, I don't know what, but I went ass over teakettle to the ground, hitting my head and shoulder and hip and ...

( ( ( had to stop writing for a while now, just to catch my breath and not cry and such ) ) )

The driver asked me whether I needed an ambulance and, when I shook my head (mistake, as that only made me dizzier) and said that I didn't, asked me whether I was going to keep on going.

This was one of those times I count as lucky and fortunate that the company that Per works for is on the same street as we live, as a man came over to where I was sitting on the ground and said that he'd seen everything and wanted to know whether I needed help. Luckily, he was heading to the very company where Per works (and which used to employ me before all this MS shit kicked me in the head!), so I gave him Per's name.

The taxi driver left before Per could get there, possibly as he was afraid of getting his arse kicked. Yes, he left me sitting on the ground, which I considered to be a well sight safer than anywhere else at the moment.

In the end, Per walked me home, gave me pills to ward off the pain that I knew was coming, made sure I had plenty of whatever I needed, kissed me and rubbed his cheek to mine, and headed back to work.

It's been a long while since I fell outside, but now, I guess, it's a much shorter while. Here's hoping that the whiles get longer and longer between...

*whimper*

N.B. In the midst of all this MS stuff, I'm also having hot flashes. Thence, the fact that, despite the brrrr factor of the weather here in Denmark, my mittens were off.

MS Messes With My Dignity...Or Am I Looking At It Wrong?

by Living with MS? Me too, Let's Talk

I am by nature an upbeat person-but in the 23 years I've lived with MS, I have found that this illness can really have an effect on my dignity. Before MS progressed to the point where it was causing obvious balance, cognitive issues etc. I was an executive and presented myself in a professional manner at all times. As time has passed, I have had to learn that shoes and bags don't "have to match", caftans have replaced my business attire, and I can no longer style my hair or apply make-up as well as I once did...these issues of course, aren't "life altering things" but were always important to me. But, more importantly, MS has made it necessary for me to "re-define" my style.

At first, it truly effected my self-esteem, as I hardly ever felt well "put together anymore". And, during conversations, I can't find words to finish a sentence. I wear a high brace on my weak leg, and it requires not so pretty shoes. Can you imagine putting on a cocktail dress with a pair of sport shoes, haha. I don't think so...

Even though my husband is wonderful and has taken over the household cleaning, laundry etc. I still after all this time, feel so guilty because I don't feel as though I pull my weight, as the old saying goes.

When I use to still drive and would do the grocery shopping, I would be bringing the bags in and before I could finish I would completely wet all over myself. I'd have to go in and shower before I could even think about putting the groceries away.

So, I ask-where is the dignity in that? Darn MS...One of the synonyms for dignity is poise-well, believe me, you can't have much poise when you'er walking with a brace and using a cane-and praying-Dear God, please keep me on my feet...And, as the girl in the graphic, I "do" hold onto walls in the house when necessary.

Well, MS can and has taken quite a bit of my dignity, but it will never take away any of my spirit. I love and appreciate each new day. So, I'll wear my caftans, brace and ugly shoes, but I'll always hold my head high because God has given me this life to live, and I above all else, I want to please him and have him tell me at the end-my daughter you have run the good race...


This concludes the 109th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 15, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 13, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #96

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

The Hurricane which is MS

You being you is amazing

by Mary K. Mennenga

When what you can do is stolen from you

The mix of emotions felt are different for each person

That learns their life and all plans made

May need to be changed or at least need a lot of adjusting

The future has become a question mark

What hasn't changed is your heart, spirit and love for life

Your not one to give up or quit when things get tough

Learning it's name M.S. gave you a power over it

Because you knew what it could and would do

M.S. didn't know the kind of fighter you are

You knew the fight was against M.S.

Not you!

What it took wasn't who you are only what you could do

You are much more than just that

Knowledge is a powerful tool when the fighting must be done from the inside out

Having limits isn't something you've had to deal with until now

Handling this isn't easy when it changes

One day you can the next your body fails it's not your fault

You know what the real reason is and it's not you

Getting people to understand does not always happen

Now all plan's made are tentative to limit misunderstandings

This is when we see how strong you are as you battle M.S.

Yet you still manage to take care of the people who love you

Of course you may not see it that way, your looking outward

We are looking in seeing your heart

That is the most amazing part of you being you

Like A Hurricane

by Gracie's Mum

August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.

The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.

The most famous of them all to hit Halifax was 2003’s Juan.

With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.

The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.

There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.

And although there weren’t many that hit land, last year was still no exception.

In August of last year we were walloped by a doozy that left us without power for 2 days.

Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.

Good times.

By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.

As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.

It wasn’t the worst of storms but it was a big one that’s for sure.

Hurricanes, although everyone is aware of the season, are for the most part unpredictable.

Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.

And we know that they’re given names and because of that we’re able to remember how bad some of them have been.

But none the less, the actual damage is unpredictable.

Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.

And nobody knows why this time they were hit or why they were spared.

Living with MS is much like hurricane season.

All year long.

Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.

Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.

And nobody has the cure.

And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.

Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.

Many will face a wrath of nature that no amount of planning could have ever prepared them for.

So what do people who live in the path of hurricanes do?

They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.

But very few move away out of fear.

They adapt or die.

So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.

And when and if it comes I have but one thing to say.

You better bring it ‘cause you’ve met your match this time.

On The Road Again

by Gracie's Mum

It’s been a long road.

Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.

And then, then it got a little swear-y.

I’ve been on this road for almost 5 years and a new road is just around the corner.

In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.

I have not returned to work since my departure in March 2010.

That is a lifetime ago.

And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.

Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.

On top of that, I have a house designed to conserve my energy.

I won’t say I feel back to my old self, because I don’t even remember what that felt like.

It’s been a long time.

I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.

A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.

I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.

To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.

To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.

To have future career goals.

Because I have confidence that my energy levels will not fail me as miserably as they have before.

For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.

I know that I will have MS for the rest of my life.

I know what MS can do without medication to divert its course.

I know now how one of those medications made me feel.

And I have learned from that experience.

I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.

I need this and my family really needs me back to being me.

And that I can see her, smiling back at me in the mirror, is almost too good to be true.

But to know, to believe that it is true, is even better.

Have a wonderful weekend!

I'm Special!

by Nicole of My New Normals

I see a neurologist to manage my multiple sclerosis. Even though I’ve had this ghastly disease for 11 years now, going to the doctor’s office always leaves me feeing down and depressed. I’m not entirely sure what I expected the doctor to say at this visit, but it was the same old stuff.

Sitting in the waiting room I kept thinking that MS wasn’t in my plans. Those thoughts would usually make me a blubbering idiot. But this time, I remembered some of my own words. I remembered the wonderful comments and support I’ve received both here and from family and friends.

I said before, I am never quite sure what the doctor will say. But that’s a lie. The feeling that I was misdiagnosed is always running in my heart and I thought he’d know. I secretly thought he’d feel that same vibe and would shower a little hope on me. After all, I thought only 2/3rds of the multiple sclerosis population ends up in a wheelchair? What happened to that? I told these statistics to my husband Tommy and he said, “You’re special and make the wheelchair look good.” It’s kind of lame, but I’m a sucker for compliments of any kind.

I thought people, who start out with visual disturbances, like I did, generally do well or at least don’t end up in a wheelchair? What happened to that? Again, all Tommy said was, “You’re special.”

I thought black Americans didn’t generally get this? Well, the gigs up. I’m black and I got it and yes you don’t have to say it I already know I’m special.

Mighty Mouse

 I read an article where Multiple Sclerosis Was Successfully Reversed In Mice. Too bad I’m not a mouse.

AAAGGHHHHHHHH!

Somehow, I feel better but I still need a drink!

"Life Interrupted, It's Not All About Me"

by Chris Tatevosian

Book Excerpt:

When I was struggling, my mood was one of nastiness.  All my actions had become hidden agendas.  My anger and nastiness developed into a learned technique for achieving my hidden agenda.  At one point during my marriage I recall my wife saying that she tried to do everything to please me in an attempt to avoid upsetting me.  Of course, she told me this so that I would be sympathetic and understanding.  As a result, I thought I was being more understanding, but I had also learned that expressing anger was a way of getting what I wanted from her.  I was guilty of angrily expressing frustration and hardship likely resulting from the embarrassment of my physical losses such as strength, energy, and simple motor skills.  Furthering this problem were the larger culprits: my mental and emotional losses, the loss of my self-esteem, and the development of cognitive difficulties.  This behavior became the norm.  In my mind I didn’t recognize my relationship-damaging and selfish behavior because my personal struggle to function was all-consuming of both my mental and physical strength.  I mean, come on, every simple daily task like tying my sneaker, standing up in the shower or holding an eating utensil became an embarrassing struggle.

Whether we want to admit it or not, the damage to our own egos can cause much anger.  Unfortunately, much of it is misplaced anger, and who is the unfortunate recipient of that anger?  I’ll take “my wife” for $500, Alex.  If someone, somehow, had been able to help me recognize I was acting that way so that I could have changed my behavior and stepped out of that “it’s all about me” fog, my marriage might still be intact today.  Having a chronic illness or disability is horrible, tragic, and unfair.  If you surround yourself in that fog of misery and self-pity, you may just be involved in a tragic accident, the result of which will be the tragic loss of your relationship, marriage or family.


This concludes the 96th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 15, 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, September 13, 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.

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