Carnival of MS Bloggers #117

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

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

Relenting and Renting
by Laura at Inside MyStory

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

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

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

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

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

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

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

Jack Osbourne Has MS

by the MS Blogosphere

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

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

The Full Story

by Judy at Peace Be With You

A good attitude,

success may depend on it.

So is being real.

I am no fool, see.

I know crap can just happen,

good person or not.

One can only make

the best of what life offers

and hope luck shows up.

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

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

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

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

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

But not at this psychiatrist's office.

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

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

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

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

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

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

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


This concludes the 117th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 5, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 3, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #19

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

"Please Be Gentle Here"

In a new MS blog - Chemo Is Not A Pony - Xenu discusses Ataxia, Chinese Hamsters, and Sesame Street Band-Aids including a profound look at Chronic Illness.

Today I woke up with major ataxia in my arms, hands, legs, and feet. This has happened around a half a dozen times over the course of the past year. Usually it lasts around 24 hours and then disappears. I think the longest it’s ever lasted was close to 48 hours.

I am clumsy, uncoordinated, dropping things, tripping, walking oddly.

It was also an injection day and, for some reason, the chinese hamsters hurt like hell going in. [See the original post for an explanation of “chinese hamsters.”]

I remember one time that Lisa, over at Brass and Ivory, commented that she doesn’t use a Band-Aid on her injection sites because it is unnecessary. I use a Band-Aid, but not for physical reasons. I am aware that the blood clots within seconds of withdrawing the needle, and that the wound is tiny anyway.

When I place a Band-Aid over my injection site, it is for purely psychological reasons. I buy boxes of colorful children’s Band-Aids—Dora the Explorer, Sesame Street, Hello Kitty, etc. Affixing one to the site is soothing; it says, This is over now. It labels the wounded area. It communicates to other people: Please be gentle here. This part hurts. I am vulnerable. It covers up with cartoons and superheroes the memory of a puncture and the evidence of ongoing internal damage in the form of an incurable disease. The Band-Aids are an attempt to “make better,” to heal, what cannot be made better and cannot be healed.

Lazy Julie, who really isn't lazy, creates fabulous MS Haikus and clever art.

Sleep evades me now.

Insomnia is my foe

MS gets so tired.

My upper arms ache.

Result of ex-stress no doubt.

My power. My choice.

Bad TV. Scrabble.

Escape routes for boring moms.

Only numbs the pain.

No meeting weekend.

Big surprise I feel like crap.

Serenity now!

Mind Sparkles. MS.

Lesions abound. Brain and spine.

Can't wish them away.

All meaning changes.

MS. It used to spell Ms.

I want that back now.

Anne of Disabled Not Dead discusses family, sleep, and Restless Leg Syndrome.

I have had this for as long as I can remember...even as a young child. I "inherited" it from my mother and grandmother. Of course, I say that in jest because I have no idea if it is inherited or not.

When I was a child (from age 4 to 9), my Gran slept with me in my bed because she stayed overnight alot and there was no extra bed for her to sleep. I can remember her rubbing her legs into the wee hours of the morning as they danced and spasmed with a mind of their own. Many a morning I went to school as tired as I was when I went to bed because my Gran's RLS not only kept her awake, it interrupted my sleep too.

After my parents divorced, my mother rented my room out to a boarder, so I had to sleep with her. Rerun time! She had the same thing going on that my Gran did. I can remember my Gran complaining about her restless legs over breakfast in the morning and my mother telling her to stop complaining. Years later, my mother would complain and Gran would tell her to stop complaining!! LOL

My mother was an alcoholic as well (Gran didn't drink) and she tried "medicating" it with booze for most of her adult life. Didn't help much from what I could see. When I entered 8th grade, my mother took me to her doctor because between the two of us with restless legs in the bed, neither of us was getting much sleep. She didn't bother seeking help until "I started keeping her up at night." !!!!!!!!!!!!!

Doc ordered Valium for both of us, except she mixed it with the booze. He gave me a list of foods to avoid that might stir up the legs. I was already on a Celiac's disease diet from age 9 and most of the bad foods were already avoided. So in later years (before Requip) my RLS had to be quelled by my own investigations and research. I learned what stirred it up, activities to avoid or prepare for, and some ways to help with the constant jumping when I didn't get RLS med on time.

Please read the rest of Anne's post here. where she discusses how restless legs can be associated with multiple sclerosis.

Update on Fundraising for Herrad's Cushion.

Herrad is a fellow MS blogger who writes at Access Denied-Living with MS.

Here is an excerpt from an email she recently sent to Anne and myself.

Thank you all very much its a moving experience that you all support me like you do. Its given me a tremendous boost, as well as reminding me about the important things in life.

The wound nurse from the Rehabilitation Center Amsterdam and my doctor recommend that I stay in bed for another month. The nurse was here this morning and said one month from now.

Its a deep and nasty pressure sore which will take a long time to heal. And when it does heal I have to be very careful. Will not be able to sit as long as I have been, will have to have breaks in the day when I lie down.

Will get Richie to measure my wheelchair cushion so you know which size cushion I need, think its different to the 18 x 18 measurements of one of the cushions. By the way which measurements do you use in the U.S?

I have been advised by the nurse and the ergotherapist that I need the custom built cushion not the overlay which does not give enough protection. I am by the way totally immobilized and can only move my arms and can not sit on a plastic surface as that will allow me to slip which is bad for pressure sores.

Thanks again for all the support and for the friendship and the love that I have been lucky to receive from you and all the other MS bloggers in the US, you are all wonderful people and help me tremendously.

Take care of yourselves.
Love,
Herrad

We have collected $335 of our $600 goal. Please consider donating and/or helping to spread the word. To donate to Herrad's Cushion click on the PayPal Button below. Together we can make this happen for a fellow MS Blogger in need.

THANK YOU VERY MUCH FOR YOUR DONATION!!!!

This concludes the 19th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 25, 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, September 23, 2008.

Thank you.

Comments for this post.

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.
Comments for this post.