Thursday, January 20, 2011

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

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?

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!

from Michael Gerber of Perspective is Everything

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.


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.

from Matt's Multiple Sclerosis Blog

PhotobucketI 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.


  1. Thanks! I am a Michael Gerber fan :) I love his attitude. I agree that we do not suffer from MS, my opinion??

  2. Lisa, thank you for sharing such a diversity of posts by these curageous people who are living with MS. My own journey with MS started almost 20 years ago and I can relate entirely to everything that was said.

  3. Love these posts, Lisa! Thanks for sharing them with us, and I totally agree with Kim. Jennifer and I are HUGE fans of Michael Gerber's!

  4. I loved reading your blog, which I stumbled upon when trying to find other MS'rs like myself. I too am a blogger ( find that this is a great technology available for finding those who choose to express our experience through blogs. Thanks for sharing your experience with me-I will be sure to check back with you often!