Monday, June 27, 2011

In Case You Were Wondering

We're on Vacation. 
Don't sit at the window TOO long. 
We'll be home before you know it.

Friday, June 24, 2011

Finals for #Dosie Awards

Your popular vote placed Brass and Ivory in the finals for the 2011 Dose of Digital #Dosie Awards.  Thank you!!  You rock.

Now it's on to voting in the Finals.  We're up against some awesome diabetes bloggers so please make your mark for your favorite MS blog (or at least the one who is up for the award).  Your support helps to keep this blog(ger) going.

Thanks and please vote here before Sunday (June 26) at midnight.

Thursday, June 23, 2011

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.



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.


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.


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. 

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.

Tuesday, June 21, 2011

Voting for Brass and Ivory in the 2011 Dosie Awards

It’s time once again to vote for the best of the best in pharma and healthcare social media. It’s the 2011 Dose of Digital Dosie Awards.

These awards are unique in that they include the Best Patient Blogs as an honored category.  "Brass and Ivory: Life with MS" is on this list of distinguished social media participants and needs your vote to be included in the finals.

Please go to Dose of Digital's blog and place your votes for some of the coolest MS-related social media initiatives and communities there are on the web.  You will find familiar websites such as HowIFightMS, ThisIsMS, HealthCentral, ChronicBabe, WeKeepMoving, IWalkBecause, PatientsLikeMe, and more.

Don't be overwhelmed by the large volume of entries (over 700), but look for websites/Facebook pages which are familiar.  And if you are reading this than "Brass and Ivory: Life with MS" should certainly be familiar. 

Thanks for your VOTE in this preliminary round!

Monday, June 20, 2011

LEGOS Rock! Last Minute Travel, and Canes

For the past two days, I have had the pleasure of building LEGOs.  Yesterday was one of my nephew's birthday, in addition to being Father's Day.  Due to some last minute travel arrangements, I was able to spend Father's Day with my own father and I'm staying at my nephew's house.  Well, it's actually my brother and sister-in-law's home but the three nephews greatly enjoy the space.

LEGOs are the big hit in the house and we jumped into the fun with a couple of new sets that my nephew received for his birthday.  Very cool stuff and it turns out that Aunt Lisa probably enjoys following the directions and building the special pieces of equipment, flying machines, castle game boards, etc as much as the boys....maybe even more.  It's especially cool when someone asks Aunt Lisa to make something specific.  We've had lots of fun.

The reason for this last minute trip is not something positive.  My cousins suddenly lost their father on Friday.  It was totally unexpected and quite a shock to everybody.  But the family has rallied around my cousins and many have traveled from afar to pay our last respects and to support the cousins.  I'm glad that I was able to drop everything and come as well.

Since life has been so very busy for me lately, I'm keeping my fingers crossed that my body holds up.  I know that I'm pushing it, but so far so good and I'm still walking, talking, seeing, thinking.  All the important stuff.  When I was leaving Chicago, I did bring the folding cane out of my luggage.  It was welcome support when it came to negotiating the craziness which is the Chicago O'Hare Airport.  In last week's trip to New York City, I didn't need the cane but I had it just in case.

I've brought the cane with me on this trip to Oklahoma.  Last night when I opened my suitcase to remove my pajamas, my oldest nephew saw the cane and asked whose it was.  I said it belonged to me.  He chuckles, "but you're not 80 years old."  That's right, I'm not 80 but sometimes these legs need a little extra help and support.  That was the end of the brief conversation.  We had other things to attend to...more important kid things.

When I finally went to bed after being awake for 20 hours, I slept for over 12 hours while only getting up once during the early morning hours.  Much needed rest indeed.  Some of the numbness on my face even subdued a bit.  Sleep is powerful magic.

Today we've had another day of fun here in the house of three boys.  More games were played and LEGOs built.  Tonight I expect another good night's sleep.  I think that I'm actually getting more sleep than if I were home.

After I return home, I will be turning around and leaving again for vacation.  Once again, the cane will be coming along in my suitcase.  It may stay there during the trip or it might be leaned upon.  That remains to be seen.  In the meantime, getting rest is vitally important, especially since there will likely be more games to play tomorrow. 

Until then, goodnight and listen to your MS body.  Always pack that cane (if you need one) just in case.  I do nowadays.  :)

Thursday, June 16, 2011

Carnival of MS Bloggers #90

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

Light in the Shadows


The Journey - Light In the Shadows
by Karen of Meandering...One Moment Please

Hubbers snapped this pic of me taking pics.


I was concentrating very hard on the tiny flower in the shadows, adjusting for the perfect exposure. You can compensate for the darkness by changing the aperture. The aperture setting determines how much light is admitted "into" the camera, determining how much light reaches the image. I just couldn't seem to get it right!

I was skeptical of how this shot would turn out.


I was happy, yet surprised to see that the light in this shot was great. I guess a little stream of sunlight that I was unaware of beamed through the shadows when I clicked off the shot.

I was concentrating so hard on the shadows, that I didn't see the light.

We all know where I could go with this...analogy wise, but I won't. Suffice it to say, many lessons are learned when we least expect.

The fullness of life consists of light and shadow,
and the movement between the two.


by Just a girl with MS
I wish:
  • I could have just one more day to live without MS.  I want to know if what I'm feeling is from MS, or just situational.
  • I could find something to be thankful for - other than my doctor.
  • I would stop feeling sorry for myself.
  • I could think of MS as another challenge in life, and not an obstacle.

Today’s small stone 
by Laura of Shine the Divine

Who knew my chariot had magical powers….not only can it get me where I need to go gliding smoothly like Aladin’s carpet, but it can make me disappear.  I hope this does not sound bitter; this was simply my experience.  I felt strangely invisible as parents of kids I’ve known since my daughter was in kindergarten walked right past without saying hello during the award ceremony.  Perhaps it was because they were focused on their kids, or because I’ve not been able to be involved in volunteering for such a long time, or because I was below their line of vision, seated in my wheelchair.  But I remembered all of them and watched them chat with one another. It is interesting to simply observe without the burden of small talk.


by Judy of Peace Be With You


The MS label
is like a Rorschach inkblot
testing perspectives.

Some use their MS
as a new hill to conquer
obstacles be damned.

Some will surrender
to unknown MS futures.
Some straddle the fence.


I'm very thankful that you continue to sharing your MS lives with me and with the world.  You inspire me each and every day.

This concludes the 90th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 30, 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, June 28, 2011.

Thank you.

Comments for this post.

Tuesday, June 14, 2011

Praying to the MS gods

Praying to the ms gods. "Lisa, I don't know how you do everything you do?" says several friends online. An honest answer is that I'm not sure how to juggle everything which is going on right now either. Besides maintaining this blog and the Carnival of MS Bloggers, I do write several posts/articles for healthcentral.com each month.

Part of my unspecified responsibilities for Healthcentral include responding to members in the community and helping those who just pop in for a question or two. Of course I do not do this alone, but sometimes when everybody is busy, I do carry the hefty weight of such activity on the MS website. I feel bad when days go by and I haven't checked in. But at some point priorities must be made.

One of those priorities this weekend was recovering from a quick trip to Chicago. Seriously this was a very quick trip in that I was gone for a total of 33 hours. Twelve of those hours were spent either in a car, on a plane, or in an airport. Yes, I was at my destination for less than 24 hours. That was crazy quick!

I ended up sleeping the day away on Sunday. I think I finally got hungry enough to come downstairs for food around 4pm or later. My body said, "We're in a holding pattern today; you should just sit back down and relax."

At this very moment, I am on the train heading north to NYC. This will also be a quick trip, but a somewhat less stressful one. I'm so excited that tonight I will get to meet up with a cousin whom I haven't seen in probably 20 years or more. I'll need to get on a different train to go another hour north of the city, but it will be totally worth it. Can't wait.

The tomorrow I will be meeting with folks from the NMSS to advise on some online activities they have in the works. I first met with NMSS employees two years ago as part of an MS Community Advisory Panel. At that time, I was the only MS patient involved. This time I will be joined by others. I will be excited to get an update on the success of some strategies which they implemented since our last meeting.

During all of this traveling, networking, advising, and advocating, I have been also praying. Praying to the MS gods that they be kind to me. I need my legs to get around, while I did use the cane in the Chicago airport. I need my mental faculties so that I can contribute at a high level. I need to be able to see, well I just need to see period.

As I've been trying to stay on top of the exhaustion, I have noticed that the body is functioning at a slightly diminished capacity. My right arm has started to subtly shake, but only to where I know that it's happening. My face is numb and fuzzy. My brain has been in need of wake-promoting assistance. Overall, though, I'm doing remarkably well.

The MS gods are being kind. It's hard for me to know for sure how to attribute this wellness. It could be the treatment change I made last year. It could be the natural course of my disease (however, in looking back I was definitely sliding downhill before the drug switch). No matter the cause, I am grateful.

Grateful to be healthy. Grateful to be ambulatory. Grateful to have the support and concern of so many people who truly "get it". Thanks to all of you, and when I figure out how in the world I'm doing all that I'm doing, I'll let you know.

Saturday, June 11, 2011

Friday, June 10, 2011

Thursday, June 9, 2011

Cat-certo

Contemplative and cheerful composition.  Enjoy.



Soloist, Nora the Cat
Composer and Conductor, Mindaugus Piecaitis
Klaipeda Chamber Orchestra

Tuesday, June 7, 2011

The Vault and The Walking Gallery

The art of Regina Holliday, patient rights arts advocate, and others will be featured on display tonight at the Center for Total Health in Washington, DC.  This isn't just any art show where paintings go up on walls and sculptures are placed on pedestals though.  Each piece of art, which tells an individual's story, will be worn on the backs of living 'pedestals' - the walkers - at The Walking Gallery.

Jackets were sent from all over to become canvases for Regina's paint brush and for other artists as well.  At last count, I read that there are at least 54 jackets, many of which can be seen here.  Paint was still being applied late last night.

Regina turned my blog/story "The value of money or the value of health - What do you see?"  into The Vault.  Read the story, examine the painting, and tell me what you see.

The Vault



The Walking Gallery
Center for Total Health, Washington, DC
Tuesday, June 7, 2011
6:00 - 9:00 pm

The Walking Gallery from Eidolon Films on Vimeo.

Saturday, June 4, 2011

A Knot is a Knot, is it Not?

The topic of spasticity has been on my mind since I’ve been experiencing it more lately.  Four years ago, I did not understand what was spasticity and what was not.  I complained of really tight muscles to my neurologist who suggested that I exercise more.  His advice was logical but it didn’t directly solve my problem.

For many months I lived with this excess tightness which no amount of stretching seemed to resolve.  Yoga was nice, as was swimming, but I never seemed to achieve that blissful level of release in my muscles which I so desired.

It wasn’t until a year later (or so) that the tightness and stiffness in my legs got to the point where I just had to complain about it in an appointment.  During this appointment, I was consulting with the nurse practitioner who prescribed a trial of Baclofen.  I started at a low dose as she suggested and gradually increased it every few days ever so much. 

Within about a week, I began to feel a difference.  Thank goodness!! 

The message from my brain and through my spinal cord had been misinforming my leg muscles to pull against themselves.  Or rather the spasticity was the result of an imbalance between hyperactive muscle stretch reflexes and muscle contractions. The prescription medication served to disrupt this incorrect message and to break the cycle of stretching and pulling which tied up the muscles in knots.

Keep in mind that my experience with spasticity is just that…..my personal experience.  Many MS patients have spasticity which is much more dramatic and disabling than I have had.  My spasticity primarily effects my calves and hamstrings.  However, it is actually more common in MS patients to have spasticity in the thighs (front of the leg) and dorsiflex muscles (on the shins).

Read this post in its entirety:
Spasticity in Multiple Sclerosis: Not Just a Knot in the Muscles

Thursday, June 2, 2011

Carnival of MS Bloggers #89

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

MS Friends, MS Children, Parenting, and CCSVI

from Angela of Gracie's Mum

In preparing for MS Awareness Month, as you know, I approached several people and asked them to think about providing guest posts. In all, I had a great response. I was able to help tell the story of a fellow mom with MS, a dad with MS and the spouse of someone with MS.

What I was unable to obtain was a post from a child of a parent with MS.

I spoke to several people regarding their mom’s MS and to one person regarding her grandmother who had MS.

It was intriguing to experience the responses. None of the children of a parent or grandparent with MS was able to share their story.

Many, although they wanted to, felt they couldn’t get their thoughts and memories together in order to appropriately tell the story they had to tell.

Another issue, shared by all, was that to retell the memories, to broadcast their thoughts, was far too painful.

My thoughts quickly shifted from intrigue to fear.

In a candid conversation with a friend from Ontario about her mother’s MS, she revealed that “MS took the spontaneity out of going out for dinner, shopping and many other things. Most of our activities had to be carefully planned.” This same friend remembers at a very young age noticing her mother having to take rests along the way from home to the bus stop and that shopping eventually became difficult due to the narrowness of the aisles and the width of her mother’s wheelchair.

To the average person who has never experienced a parent with a chronic illness these examples probably mean very little. To a parent who has MS, who has an active child and a passion for leading a normal life, these examples are frightening.

I do feel a sense of relief in knowing that Grace will likely never remember a time in which I didn’t have MS and therefore will probably never lament or mourn the loss of those easier times. What I can’t come to terms with is that she will likely mourn and lament the lost opportunity to have a normal, easier life.

To have a life where mummy, not just daddy, can run and play in the yard. A life where mummy, not just daddy, can ride a bike to the store to get slushies. A life where mummy, not just daddy, can walk the beach for hours combing for rocks, shells and beach glass. A life where mummy isn’t always needing to sit and rest. A life where mummy is always present, not always needing to lie down. A life where mummy’s, not only daddy’s, legs work and work all the time. A life where the house, and location of that house, isn’t determined by what mummy can and cannot do. A life where planning is because we want to, not because we have to. A life that isn’t measured in spoons. A normal, easier life.

Too many times already I’ve noticed how much she has been forced to mature beyond her years. Too many times already she’s been the one consoling me. Too many times it’s been her little arms wrapped around me, or rubbing my back during one of my weeping, sobbing breakdowns. Too many times she’s asked me why my leg shakes or why I’m tired. Too many times she’s asked me if I need my cane, would I like her to get it for me. Too many times while at physiotherapy or doctor appointments I’ve had to explain a walker or wheelchair. Too many times I’ve heard her say how glad she is that I’m not in one of those anymore. Too many times, I’ve heard her say how glad I’m home and that she never wants me to go to the hospital again. Too many times I’ve seen the wordless expressions on her face, that tell me just too many of her fears.

And that’s just not fair.

I’d be lying if I didn’t say how much anxiety I feel when I’m at the MS clinic or preparing for an MS event like the Walk on Sunday. I’m anxious because I have not totally come to terms with this diagnosis anything beyond what I have personally experienced. The depth of this disease is not evident until I’m around others with it. And sometimes it takes my breath away. I imagine a likeness to my anxiety to that of a newly diagnosed cancer patient who arrives at their first round of chemo. They expect to lose their hair, develop a pallor complexion and lose weight. But it probably never really feels real until they see those waiting for their own chemo rounds and are on their 4th, 5th, 6th, 10th, and 14th round. Some have hair falling out, some have only tufts remaining and others are wearing scarves or hats to cover their bald heads.

Reality becomes visible. And you are left raw and open. But in spite of that you need to remain warm and loving, cool and collected because you are a mum and your little girl wants to know why you’re crying. Again.

You’ll always hear people say that a parent should never have to bury their child. Same is true for a parent having to be cared for by their child. It should never have to be that way. The parent should always be the parent, the child always the child.

When Steve’s father was very ill with brain cancer and in a palliative state at home and my mother in law required help from Steve lifting and bathing him, I watched and cried over the role reversal. And now I cry at the potential for that very same role reversal in my own home, with my own family.

And so I walk. I walk, I raise money, I nag, pester and plead for donations so that Grace will never have to lose her childhood to MS.

This post is dedicated to all the Gracie's of the world. To Kelly and to Kendra and to all the children that have lost a parent to MS, whether in life or in death.

I walk for you and for me.

Have a most amazing weekend!


from Daphne of General Static

MONTHS!

Thank goodness for the postings of a number of bloggers who talked about having had no results from their venoplasty for CCSVI. Because of them, I went to my procedure with eyes wide open and with the attitude that I would be OK with it however it came out. I just had to know. The money was spent the minute I made that decision and I really had nothing to lose from that point on.

It can certainly be disheartening to have no results; mine have been minor enough to cause me to wonder if they are just my imagination. I have no regrets, however and I feel like a pioneer, having been part of the early research. It's a lot of money, yes, but I was spending it to make sure I hadn't just ignored something that I would regret the rest of my life. I might still get some back from insurance and that would definitely be a good thing.
Because I am now five months past the procedure, I'm going to use this post to update you, and myself, on what has happened.

Within 36 hours of the procedure, I realized that 95% of the pretty awful shoulder and neck pain I had been fighting for over two years was gone. I could feel carpet under my feet. My face and scalp were far less numb.

Within a week, most of those symptoms had returned except the neck and shoulder pain - not a great result, but within a month, I was realizing that I could read difficult reports and understand them again. I never thought I had brain fog, but I have to admit that I would just throw my hands up in defeat over those reports and quit--not a good idea for someone with MS who is trying to keep up with various treatments and alternatives!

At the five month mark, I can still read the reports, I still have much-reduced shoulder and neck pain and I've actually bettered my walking time a fraction on the CCSVI-Tracker site. I now can stand, walk around an object 3 meters away, return and sit in 17 seconds. Just 3 months ago that was 24+ seconds. I thought it was a fluke but it happened again this month. Some of the uninitiated will pause at my pride over a 7 second improvement but hey, that's almost 30% better!

I do feel stronger. I can't measure that, but I seem to last longer, feel sharper and more confident in my walking. At the moment my face is again less numb but it does come and go. Nothing else has changed. I still have foot drop, I still have numb toes, I still walk with a cane and use a scooter frequently, but about the venoplasty? I still have absolutely no regrets.


from Marc of Wheelchair Kamikaze

"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me." -Brian Eno

There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in with love you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.

No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.

Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.

Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.

These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.

Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.

In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.

In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.

Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.

I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.

I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.

Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.

When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.


This concludes the 89th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 16, 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, June 14, 2011.

Thank you.

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