Carnival of MS Bloggers #80

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

Perspective, Healthcare Policy, and Friendships

Martyrdom Ain’t For Me, No Siree!

by Jenna of Me, My MS and I

I’ve come across many instances of describing people with MS as ‘MS sufferers’ recently. Everyone prefers their own terms, as it were, or none at all. It thoroughly annoys me that others take it upon themselves to decide I’m a ‘sufferer’ and to describe me as such. I’m not planning on being up for martyrdom, so no ‘suffering’ with quiet dignity for me, thanks! I plan to grow old disgracefully and have a whale of a time doing it!! I’m a person that happens to have MS (and it’s *my* MS thank you very much, so hands off with the descriptions and names!!), not MS that just happens to have a person attached. We’re people, not a condition. Consider the mental health campaign slogan: see me, not a label.

I prefer to have a riotous time during the good times and enjoy them thoroughly, and although the bad times aren’t great, I decided to kick my MS in the arse and fight it every step of the way (even if it means throwing sand in its eyes!), as opposed to ‘suffering.’ Suffering implies a passivity that no MSers whom I know subscribe to. We’re all fab, super folk who are determined and stubborn and fight our MS every step of the way. These are our bodies, it’s our MS, and we decide how we describe ourselves.

Perhaps some people with MS don’t mind at all being described as a ‘sufferer’ and that’s their choice which they make and are happy with. Everyone is entitled to their own opinion, but before the next time you decide to call someone with MS a ‘sufferer,’ consider if you have the right to – are we really ‘sufferers’ and what gives you the right to decide if we are?

Living with MS on Your Own Terms

from Diane J Standiford of A Stellarlife

It always amazes me how well you handle your multiple sclerosis. Oh, sure, you may have cried, been freaked out, asked, "WHY ME?" but after the smoke cleared, you started living with MS on your own terms.

You started a blog. You wrote your feelings and struggles about your new life, sharing with the world very private observations and fears. Then you read other blogs and bonded with strangers who lifted your spirits because you found you were not alone with MS. Strangers became friends and daily visitors.

Your canes or walkers, scooters or wheelchairs, became pals. Pals you decorated, bought accessories for, heck, they became a part of the family! Courage grew in your very soul. Needles-peedles! You found you could inject yourself and eat better, exercise, find new doctors and learn new words. What was once a hideous burden, became a tedious inconvenience.

Most miraculously, you found laughter in the struggles of MS. Would you have found some of the bodily mishaps funny that now you do? Laughter is the best medicine and every day you use it you are certain to feel better. Laugh and the MS World laughs with you.

Most gallantly, you never stop looking for a cure, you fight for your health care rights, you challenge doctors and scientists to "step it up." From your walkers you call congress and organizations urging them to fight with you. Using your damaged brain you weed out MS scams, and plan ways to keep medical experts on your side.

So hats off to all of you! That hotel on Boardwalk is YOURS! And for those of you just diagnosed with MS? Well, very soon you too will live on YOUR own terms. Life is but a game, and we are just the players. Gather your family, friends and loved ones around the game board and remind yourself every day that life is short, so drop the "Get out of Jail Free" card and throw the dice!

Attitude and Perspective for Better Living with MS

from Michael Gerber of Perspective is Everything

Attitude and Perspective for Better Living with MS

I am dependant for my survival on a medication
that is priced at between $25,068 and $30,756 per year.

from Stuff Sick People Have to Put Up With

Yes. You read that right. No, that’s not a typo or a mistake.

My medication alone is priced at between $2,089 and $2,563 per month.
I earn between $15,000 and $23,000 per year.

Obviously you can see the problem here. The total out-of-pocket cost of my medication alone exceeds my entire annual income by up to $16,000.

I often ask people: “What does ‘being sick’ mean to you?” I ask this question because I am curious as to how people will respond. Most of the time, people who do not have any kind of chronic illness can only conceive of “illness” in a few ways:

A. Short-term, minor illnesses, like colds, flus, and mild bacterial infections, that either go away untreated or go away with a relatively inexpensive antibiotic

B. Acute, catastrophic illnesses like cancer that can potentially bankrupt a person, but that are treatable and “curable” (for the most part) with, say, chemo.

and/or

C. Acute, catastrophic accidents that result in broken bones or other surgical needs—-again, can potentially bankrupt a person, but are “fixable.”

From what I’ve seen, unless someone has direct personal experience with chronic illness (either themselves or an immediate family member), they really can’t conceive of it.

“Illness,” for the vast majority of the population, is transient. It’s temporary. It’s that nasty cold you have for 2 weeks that passes. At worst maybe a broken bone or cancer: but hey, with a surgery and a cast or some chemo, you’re set, right? Life goes on. You get “better.” You’re cured. Everything returns to normal.

I think the reason why a large segment of the population actually thinks it’s OK to deny health coverage to people is because they have zero direct experience with a chronic, incurable illness.

I’ve been sick for nearly four years. I am never getting better.

Let that sink in for a minute, if possible. I’ve been sick not for 4 days, or 4 weeks, or 4 months, but 4 years. I will never, ever get better.

It is difficult enough to get through each day, to work and be productive, to manage all of my responsibilities while constantly and unrelentingly sick, without also having to worry about stuff like: “Where on earth will I get an extra $30,000 to pay for my medication when my health insurance policy expires next summer?”

For those of us living with chronic illnesses, every single day is a struggle. I don’t talk about it much, but I am constantly in pain. I constantly feel sick. I remember, before I got MS, how I used to wake up and it was just a question of: “Do I feel sick or well today?” Most days, of course, a person feels well. Then you go about your business and don’t even think about your body, really.

For almost four years the question I’ve asked myself upon waking has not been: “Do I feel sick or well today?” but rather: “How sick do I feel today?”

There is no more “feeling well.” I will never again “feel well.” There will be days when I feel less sick or more sick, but there is no more “well.” It doesn’t exist.

I can live with this illness, and what it’s doing to me physically, and what it will continue to do. I understand that I probably won’t be able to walk within 5-10 years. It’s OK with me that I already have lots of permanent neurological damage. I can bear it. The pain, I can handle it.

What I can’t handle is, on top of everything else, not knowing how I will get health care, or afford a health insurance policy, or afford a medication that costs more than my entire annual salary. I think until you’ve lived with that kind of situation or witnessed it firsthand, it’s fairly easy to dismiss the needs of people who really do need health care. It’s fairly easy to be callous, because your only point of reference for “illness” is perhaps a cold, or the flu.

This is universes away from the cold or a flu.

The illness I can bear. Not having access to health care and medication, I cannot bear. I really can’t. Please don’t ask me to.

My Thoughts: Friendship

from Matt's Multiple Sclerosis Blog

I have always been one to keep a few close friends in my life rather then surround myself in a huge social crowd. It's been hard for me lately not because MS has destroyed my friendships but because MS has allowed me to see people more clearly, to see them for who they really are, to “see their true colors” and unfortunately, I have not liked what I have seen so far... This has led to several of my good friendships falling apart.

Every incident has been different in it's own ways but fundamentally, when you break each situation down, all my friendships have ended for the same basic reason. I have been let down in some way shape or form as a friend. I have always gone above and beyond for my close friends, the people I care about, and the people I love. I have always put them all before myself, and truly tried to be there for them how ever I could. I slowly began to realize in the last few months that none of my friends were really willing to do the same for me. I'm not going to bring up any particular incidents because I am not trying to put anyone on the spot or bring my personal affairs into the matter but I can truly say that I have busted my ass for several of my friends who in return couldn't even show a little effort in trying to be there for me.

I try my best not to hold grudges but sometimes resentment is hard to shed, sometimes it's hard to forget the past and not be bitter. I don't let it anger me anymore because that is a waste of my emotional resources but to be bitter doesn't really take a toll on my emotional well being. Though I guess you could argue that this has caused me to grow cold and I know it, I can feel it, but I can't help it. Why should I care for those who have proven to not truly care for me? For those who have found it so easy to just walk away?

I have just a couple true friends left who I know are genuine but at this point I feel no desire to reconstruct old friendships because I don't know if I believe that people ever really change. It would take a lot for someone to prove to me they have changed, that they want to truly be my friend, but at this point, “sorry” won't do. “Sorry” has lost all it's value to me. Anyone can say it but not everyone can mean it let alone prove that they mean it.

When writing on my blog I try my best to maintain a positive attitude but I can't hide the fact that at this point in my life, I have a very grim view of humanity and it's not because of my MS. MS might have aided some of my negative views on humanity but for the most part it's my life experiences and social experiences that have lead me to think the way I think and feel the way I feel. Knowledge is power but knowledge can also be a painful burden. Maybe I have just yet to mature enough to know how to properly process and handle the knowledge I have obtained, I don't know, I just know that I am growing cold and calloused and I have no idea what it will take to change that or how long it will take for that to happen.

“Ignorance is Bliss”

A true statement indeed, but ignorance is just the path of least resistance, the easy way out, and knowing myself and my pride, I know that I can't take that route in life. I'll eventually have to learn to deal with knowledge, reality, the world, humanity, people, all of it. I'm not taking the easy way out, I will endure and I will overcome.


This concludes the 80th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 3, 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, February 1, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #79

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

Blessings, Honor, Friendships, and Self-Awareness

Bright Blessings

by Laura of Shine the Divine

 through 

the dark of night

I offer bright blessings to all

may we each open our hearts a little wider

 absorbing the love and peace that surrounds us

illuminating any darkness we feel

saturating us with

Spirit's sacred

light

may the returning light of winter

continuously sustain us, 

you, me, our beloveds,

all beings beyond

time and space

discovering

holiness 

exactly

where

we

are

For my doctor

by Mary at Travelogue for the Universe

For Hillel Panitch,
my primary MS doctor and the relentless researcher of MS,
who had stellar bedside manner and
who I really had to be talked into seeing by my eye doctor. In the end he became my first choice neuro doctor and I am very picky, being an "old neuro nurse".
I wrote this shortly after I found out he was gone.

I was sitting in the McDonalds parking lot,
Eating my lunch on the road where I work
(I still work full time, thanks Dr. P...)
Assessing clients

And helping them access personal care.

The clinic called and my heart always skips a beat when they call me

Back to my other reality....

This is YOUR life, not some other sufferer.

They wanted to invite me to a tribute to Dr Panitch.

I was on the “a” list.

I looked around, was there anyone looking at me?

Did anyone see? Hear?

I wanted to be polite, respectful,

I wanted to say, Yes.

My schedule flashing in my head.

How could I do that, I thought.
It is for the MS society.

The people who thought my MS story was too long and when I shortened it they said it wasn’t quite right.

But it is for Dr Panitch, I thought,
A lifetime achievement award.

No, I said, so plainly, No.

I am honored (and I was sincerely),

But I cannot do it.

I lived in two worlds,

The Neuro Nurse and the Neuro patient.

My friends, coworkers from 30 years ago would be there,

as health care professionals.

How would I fit in?

My world, a subset of both nurse and patient.

Hearing he is gone from our material world,

I am relieved I was not there,

That my memories can be of him standing in the hallway,

Trying to peek at my progress on his study meds,

Briefly making eye contact, I smiled at him,

Trying to say what he has done for me is appreciated.

He has bought me some time,

He has given me expensive cutting edge treatment I would have otherwise gone without,

He put his hand on my shoulder and said, “Don’t worry, we will take care of you.”

And

He meant every word.

Participating In The World

by Herrad of Access Denied

Giorno Di Mercato, 1976

Expressionist Art.

Emilio Guiseppe Dossena.

The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.

That is really what the internet is all about, simple and straightforward communication and participation.

Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.

I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others.

My words are not changed by anyone, every post, with the occasional interesting article, has been written by me.

My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.

In the 4 years since I started blogging I have made many friendships and received and given alot of support.

I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.

When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.

This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.

I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life.

It enables me to communicate with others around the world, even when I could not leave my bed for two years.

This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.

Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago.

I communicate regularly with people I have never, and sadly, will never meet, except online.

The internet has enabled me to communicate with others and be part of the world.

That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.

It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.

The Year of Doing Less

by Joan of A Short in the Cord

I'm going into my fourth year of "early retirement" due to disability.  As is my custom, I am reviewing lessons learned from last year.

The most important lesson learned is that I should not plan to have the same level of energy that I had before disability.  Last year, there were too many times when I believed that I was normal and had the same energy level that I had before.  So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion.   "What happened?"  I would whine.  Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.

But last year, I lost sight of my authentic self.  I lost sight of the reason for my disability.  This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise."   Bullpoop.  I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days.   I am not using them as role models any more.   I will be my own authority and not succumb to peer pressure.

This next year, I pledge to do less.  I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything.  I pledge to give serious thoughts to my priorities.   And I AM prepared to deal with the disappointments - mine and others.

Just thought you should know this now so that you will be prepared for a different year, too.

Happy New Year!


This concludes the 79th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 20, 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, January 18, 2011.

Thank you.

Comments for this post.