Carnival of MS Bloggers #14 - Independence Edition

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

independence - freedom from control or influence of another or others
freedom - the condition of being free; the power to act or speak or think without externally imposed restraints
personal independence - self-sufficiency, self-reliance, self-direction, autonomy

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
The Declaration of Independence July 4, 1776
Those who won our independence believed liberty to be the secret of happiness and courage to be the secret of liberty.
Abraham Lincoln
In the truest sense, freedom cannot be bestowed; it must be achieved.
Franklin D. Roosevelt
Achieving freedom. What an excellent and empowering view of life. Independence does not quietly happen; it must be cultivated, battled for, and nurtured. Enjoy the following stories of freedom and independence.

Emotional Independence and Freedom from Guilt

Very recently our friend Blindbeard began telling her story of Healing. She has a beautiful way of getting to the heart of the matter at hand while discussing "issues...when trying to come to terms with having MS. They are not pretty, yet I cannot believe that I am the only one who went through some of these ugly stages." She continues with, "consider yourself warned, and if nothing else I hope a few people can relate and hopefully get rid of any guilt they may be carrying around for the things they did at one of the hardest times in their life."

Love Me, Don't Judge Me

There is a good reason why I take it very personally when someone tries to tell me how I should feel or what I should be doing. I don't get angry easily and I don't care too much about what others think about me; but being human, I care very much about what I think about me. I'm sure you know this, but please bear with me as I reiterate some things that are pertinent to this story for anyone who may not have read my older posts.

My diagnoses came as a complete shock, out of the blue, a horrible attack out of no where with very little warning. My early signs I shrugged off as nothing important -- depression, anxiety, a leg being numb from time to time etcetera etcetera. And in that first major attack I lost so much of my life that I valued: doing foster care (my neurologists do not want me to have even one kid because of the stress); working and having my own money; my general health, which had always been excellent; spending my time in the outdoors, fishing, camping, gardening. I cried for a couple of months but after a time when others were not crying as much, or were trying to show a brave face for me, I stopped sharing my pain with them, especially my family as they were just as upset (if not more so) than me. Mainly my mother because she is a nurse in a nursing home and cares for several MS patients that have had the disease for umpteen years without the benefits of the DMDs we have now, so she didn't want me to come to her work and see any of them in case it worried me more.

After the first shock wore off I kept all my feelings to myself and put on a brave face for the world to see. This worked for quite awhile until my fourth round of steroids in less than 10 months. I had just celebrated (?) my first anniversary of being diagnosed and was finishing up my taper of steroids when it all came crashing in on me. I woke up that morning feeling strange. I don't have the correct words for it, I just know I felt so numb and dead inside that I wanted to take a knife and cut myself to see if I could feel it. I fought the feeling and ate breakfast and went grocery shopping, but all I could think of was writing a note to explain why I had to kill myself. I came home, wrote the note thinking it would get that out of my head and finding it didn't help and then I made a series of mistakes. I printed the note and put it on the counter in the kitchen, found an old rusty dry wall knife and a rusty dull razor blade and went to work on my wrists.

Somewhere in the haze I was in, I had a feeling that it wasn't right so I called my mom. She in turn called 911 and my whole family, several police, firemen, and EMTs swarmed my house. I cut my wrists up and down and back and forth, crisscrossed and every which way I could. If those nasty rusty things were not so dull it would have been even uglier than it was. There was blood all over my clothes, the kitchen, and me. My memory becomes very hazy after I started cutting myself. I know I put my hands over my face and wouldn't look at anyone because I felt so worthless and useless that I couldn't look anyone in the eye.

I ended up being tossed into the loony bin and had 5 days to cool my heels and think about what I had done. I had to go before the Mental Health Review Board to show that I was no longer a "mentally ill and dangerous person." They shackled me (as if I could run away!) and that damn note I wrote, that was meant only for family to see, was pulled out over and over and over again. I got so angry from always having to talk about it, I told one of the counselors to just publish it in the newspaper so the whole town could read it and talk about it. In the loony bin I decided that I was no longer going to pretend to be/feel anything that I am not.

Nature has a way of healing us whether we think it will or not, and I decided that I was just going to be me and let nature do her thing. I will never, under any circumstances pretend to feel anything other than what I am feeling. I know it was the steroids combined with my hiding my true feelings that pushed me over the edge that day. That is why I don't like people telling me what to do or how to feel. I will get there in my own sweet time, and trying to force it is not healthy. Instead I am embracing my emotions and enjoying the way nature works on a damaged soul. I am intrigued by the healing process; it is such a myriad thing and so unpredictable. But in a life that is so routine I want to scream and run away some times, I welcome the ups and downs and realize that we all grieve in our own way, and it is always best to let nature do her thing and not let others tell you how you should be feeling. I wish I had known that earlier -- my wrists would be a lot prettier.

Freedom of Laughter

Physical Independence on Wheels

Browsing through the blogrolls of MSers, I discovered a new-to-me MS blogger, Retired Waif, who writes with sarcastic humor and dry wit, often with colorful language. I think it was this statement which sent me reeling in laughter - "People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one."

Why YES, this IS in fact the hill I want to die on.
So I haven’t been around lately, because I’ve been, seriously and for real, actually out of the house for once in a while. No lie. This hermit thing is for the birds once summer hits, and I’m doing my best to actually get the kids in the open air as much as possible. This is all made much, much easier by the fact that I have my new chair, which is utterly slick, and I can now do things other than clutch my husband’s arm all day ...

Despite the invention, some time ago I believe, of a circular frame or disk arranged to revolve on an axis on vehicles or machinery (popularly known as the “wheel,”) people remain, apparently, very very daunted by hills. On my behalf. The situation is so dire, in fact, that it renders null and void any requirement for consent on my part to being touched, grabbed, or screamed at

Here’s a brief summation of a few of the incidents I mean:
The farmer’s market: Not the first time this sort of thing happened, but the first time that the situation went beyond one in which I could continue to chirp “No thank you! No thank you!” and started letting the obscenities fly. You see, the Farmer’s Market I frequent and the ATM a block-and-a-half away are separated by… (cue the spooky music)… a HILL. OK, a pretty steep hill. It’s actually a hill that I practiced on a few times to make sure I was up to the hills on campus, before I took the chair out alone for the first time. It goes… up. On a grade. In one direction. As a hill does.

Halfway up I hear panting behind me. A fortyish woman who, let’s be frank, probably spends a good deal of her time praying to be in the sort of shape I’m in is laboriously clambering up behind me and, thinking she might need to pass, I pull aside and stop. Mildly annoying to stop on a steep grade, but no more so than having to hurry up on her behalf would be. When she catches up, I expect her to pass so that I can continue, but instead she stops and, proud as anything, beams “I came up here to help you!”

“Oh, thank you so much, that isn’t necessary,” I tell her.
“Oh, no, it’s fine, she says, and proceeds to dart out her hand and make a snatching sort of grab for the back of my chair. And right here is where I lose all sympathy for these people. It’s the grab. It’s not just that they’re touching without permission. Not just. It’s the fact that the grab is fast and the grab is furtive, because they know. They know they’re doing unwelcome shit. They just think they can get away with it.

I couldn't really hold back a loud, startled “What are you doing?” and things devolved from there. She wouldn’t leave, just stood there, arms folded, yelling about how she was helping and I should be grateful and so on and so forth. Egh. Enough.

After she’d finally gone away, I turned back up the hill again, sharing a shaking-our-heads-in-disbelief glance with my ten-year-old. Not two more feet up the hill it happened. Crack. The seat-back (which is extremely low) gets slammed into the small of my back, hard. Someone, a man this time, has apparently decided that he’s going to take over this going-up-the-hill thing for me and, not seeing any way to push the chair (because there isn’t one) has decided to grab the backrest and shove.

No.
I was, at this point, beyond furious. Guy, as well, was livid at being challenged by the ought-to-be passive victim of his help. To quote Forster, “the man was young, the woman deeply stirred, in both a vein of coarseness was latent.” Anyone reading this blog knows there’s more than a vein of coarseness in this waif, and it ain’t all too latent–and my rescuer had quite the temper himself.

Yelling. Screaming.
People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one. Really. It’s bloody expensive and insurance covered none of it (but they’d cover a powerchair, which costs thousands more, how asinine is that?). Also, I sliced my own hand open (there’s apparently a reason this chair is named the Razorblade) and don’t really want to be liable for someone else’s misguided injury. Speaking of injury, I did call the police, and it is assault to grab someone’s chair, and the officer I spoke with said that it might even be possible to make a case for leaving-the-scene if you break something on the chair and then run off, refusing to give me your info. I wonder if I can charge it as a bias crime when they respond to the assault charge with “but she’s disabled!”

You can’t really predict what kind of quixotic, litigious lunatic is sitting in that chair you’re trying to grab, so why not try asking first? The ass you save may be your own.

A Dream of Financial Independence

In January on Brass and Ivory, I posted about the cost of MS injectable medication. Only a few months later, the numbers need to be adjusted. Substitute $8000 for $7000 and $2000 for $1750. Imagine - one ounce of medication costs $2000. Unbelievable.

The value of money or the value of health - What do you see?
What does money look like to someone with multiple sclerosis?

This is what $7000 looks like to me....120 pre-filled syringes...120 mL.
Four months worth of daily self-injectable medication.

One syringe = 1 mL

120 mL = 4 ounces

1 ounce = $1750

But it won't pay the bills nor would it pay for an Italian vacation. You might look at it like an investment in future health and mobility. Put the money in now and hopefully reap the benefits later if all goes well.
This is what $7000 looks like to most people....$7000.

It could be used to pay the mortgage, to purchase a new french horn, or to provide for that Italian vacation. But for someone with multiple sclerosis, it likely goes to pay for out-of-pocket healthcare expenses.
Although I have a private, individual health insurance policy with a major carrier in the Washington, D.C. area, I still have to pay this $21,000 annual expense for a single medication designed to slow-down the MS disease progression. It might work, it might not work. I can only hope it does.
My insurance premiums now cost approximately $3500 each year, but the company still will not cover my medication in full. It will payout $1500 each year for medication, but the rest is my responsibility...my cost.
But what if you don't earn enough money to be able to spend an extra $21,000 each and every year in the hopes of avoiding some level of disability in the future?

Well, the patient contact organization created by the pharmaceutical company (in this case Shared Solutions) refers your case to their benefits investigation team. This team will also run a quick search for government programs in your area for which you might qualify.

What if your state or locality does not have a pharmaceutical program which will cover this medication?

Then your case is referred to the National Organization of Rare Disorders, Inc. (NORD) who administers the prescription assistance program for Copaxone/Teva.

What kind of information does NORD require?

Recent paystubs, federal tax return, 3 months of bank and investment statements, and a signed application form verifying assets, income, and expenses. If you are not single, all of the above information is also needed regarding your spouse.

What does it take to qualify for help in paying $21,000?

Well, what I do know is that with an income of $27,000, a single 37-year old female with some money in retirement and savings might qualify for a 25% award equal to 3 months of medication provided by NORD.
When that same single female, at age 38, earns an income of $19,400 (less than 200% federal poverty level), she discovers the magic threshold at which NORD will provide 100% of the $21,000 medication.

Ironically, today as I have prescription costs on my mind, I received the reapplication form from NORD. Within the letter accompanying the application, NORD reminds us -

"As the Program is one of last resort, we must remind you that continued participation in the program is not guaranteed. Also, allotments awarded may vary from year to year as they are based on dosage, financial need, and the relative size of the Program itself."

Nothing is guaranteed...and each year this now 39-year old female must submit all her financial information for evaluation.
How truly needy is she and how deserving of a helping hand?
It's a numbers game really. As a self-employed person, even I don't know exactly what I've earned until I sit down at year end and calculate all deposits and all expenses. But I did calculate once that I would need to gross an additional $30,000 to be able to pay the $21,000 (plus increased taxes and SEP contribution) and maintain the same take-home pay.

Anyway you look at it, that $7000 worth of medication is an expensive forfeiture of $10,000 earning power and the future financial security that the $10K might provide. I feel as though I have to give up alot in order to gain some hope of slowing this MonSter down.
How do you view your medication?

I dream of never having to examine my medication in this manner. That would be freedom indeed. What about you?

This concludes the 14th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 17, 2008. 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 15, 2008.

Thank you.
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