Carnival of MS Bloggers #43

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

Yoga, Tysabri, and Insurance

For My Students: Yoga Invocation 
by Nadja

When I teach yoga I like to give freely of myself, to nurture my students and to help bring them closer to their true selves.

Nevertheless, I get as much out of my teaching as they do. Teaching yoga gives me a home, a place of sanity to stand when all I want to do is howl at the moon. It reminds me to breath. It reminds me of my favorite prayer by Saint Francis of Assisi:

"Lord make me an instrument of thy peace
Where there is hatred, let there be love
Where there there is injury, pardon
Where there is doubt, faith
Where there is despair, hope
Where there is darkness, light.
Oh divine master--
Grant that I might not so much seek to be consoled, as to console
To be understood, as to understand
To be loved, as to love
For it is in giving that we receive,
And it is in death to self
That we are born to eternal life."
Amen.

My heart is filled with gratitude for the things I receive from teaching yoga. I bow to my students. I bow to the teacher in all things. I prostrate myself to the divine with the faith that I will find a way no matter what.

Let yoga be your candle in the dark.
Let it lift you and fill you.
Let it in inspire you
Take what you discover on your mat into the world
And create peace, love and harmony.

Tysabri and Little Pieces of My Life
by Azoyizes

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.

Getting Squeezed
by Lisa of Brass and Ivory

This week I received the annual note from Carefirst BCBS, my insurance company, informing me what my new health insurance premium rate will be for the upcoming 12 months. Of course, I expected that it would go up, no matter how I wished it wouldn't.

What I didn't expect was HOW MUCH it was going up!! 31% increase

OK, so it's not the first time the rate has gone up substantially -
In 2003, it was 22.2%. In 2004, 18.2%. In 2007, 19.9%. In 2008, 18.8%.
(see graph below)

But COME ON. Enough is enough. another 31%?

For insurance which doesn't pay for my MS medications, I will be paying $5172?

That's just for me, no one else, and is not subsidized by any employer since I am self-employed. And unlike most folks who have employer-sponsored health insurance, I will be paying Social Security, FICA, etc taxes on that $5172.

Why doesn't Carefirst cover my main MS medication, Copaxone?

• Because the drug benefit for individual policies is capped at $1500 annually.

How do I get Copaxone if insurance doesn't cover it?

• I have to qualify for assistance from NORD which administers the PAP.

How do I do that?

• I must earn less than 200% Federal Poverty Level (FPL) and can't have significant amounts of money in savings.

How much is 200% FPL?

• This year (2009), it is an Adjusted Gross Income (AGI) of $21,660.

For more on this story, see The Value of Money or Value of Health: What Do You See?

Now, to be fair, the $5172 in insurance premiums will not be 24% of my 'total income.'

Since I'm self-employed, I get to deduct the amount spent on health insurance premiums before income taxes are calculated. So it's a minimum of 19.3%, after Social Security/FICA tax is accounted for and before the AGI is calculated.

But, please tell me. Who can afford to spend 19-24% of the highest level of income they can afford (or are allowed) to earn for health insurance premiums?

And let's just say that for 2008 I did earn considerably less than 200%. In fact, $5172 really would be closer to, if not more than, 25% of total income.

According to proposed health care reform legislation, affordable premium rates for someone with my income level would be closer to 5% of income AND I would very likely have coverage for my medical needs, including pharmaceuticals.

A few weeks ago, I sat down and calculated what medical expenses were included during one year in obtaining the routine care I require. That detail can be read at Living with Multiple Sclerosis: The Cost of Chronic Illness.

Update: Now it looks like the Public Option just might get dropped during negotiations in Congress. sigh.


This concludes the 43rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 10, 2009. 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 8, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #17 - Insurance Edition

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

"Cash, Credit, or Co-Pay?"

Coming to us from a London adventure in the land of free health care, Nina who blogs at Planning the Unpredictable discusses Insurance.

Since going blind in May, my insurance has paid out the following:

• $1,500 for the Eye doctor
• $1,000 for the Neuro doctor
• $2,500 for the MRI
• $1,000 for the Neuro doctor
• $500 for the Neuro doctor
• $6,000 for three months of Copaxone
• $4,500 for the Spinal MRI
• $400 for the IV Steroids
• $1,000 for the Neuro Doctor
• $500 for the Neuro Doctor

Total: $12,900 Medical Care and $6000 Drug Coverage

Nina's Out-of-Pocket: $200

[ed. Seriously? These were the negotiated and paid rates?]

Without insurance, this might have happened:

• Cash out my retirement
• Declare bankruptcy (isn’t medical bills one of the main reasons people declare bankruptcy in the US?)
• Try to qualify for a state run program which wouldn’t allow me to see a qualified doctor
• Ignore it and not receive any care
• Get diagnosed but unable to afford Copaxone

My life is NOT worth more than anyone else's, but since I have insurance I get treated like it is. I am insanely lucky. I was diagnosed in a week after going blind. I had no problems with insurance. Out of pocket, it has cost me less than 200 dollars. Again, INSANELY LUCKY.

For more discussion on the contrasting healthcare systems in the U.S. versus the U.K., read the rest of Nina's post.

Next up, Lisa of Brass and Ivory explains that  

The MS Relapse is Not So Inexpensive.

Since the relapse this spring, I have finally received all the Explanation of Benefits related to the three doctor's visits, 5-day round of IV Solumedrol, and a trip through the MRI tube.

• $710 Three Neuro Visits
• $3825 Solumedrol Treatment
• $6000 MRI Brain/Cervical

Total Billed: $10,535

• $5285 Insurance Paid
• $4550 PPO Discount
• $700 Lisa (out-of-pocket)

Total Paid: $5,985

Who ever said MS was inexpensive? Nobody I know.

On a different note, Lisa tells us that she just received notice of yet another large rate increase for her insurance premiums.

The chart on the right shows that the greatest increases were seen in the following two-year time spans: 2002-2004 (44%) and 2006-2008 (36%).

As it stands, Lisa's policy now costs $3780 each year, still without coverage for dental, vision, or MS meds.

It's no wonder that individuals with special health considerations are getting married to gain access to insurance coverage or worse getting divorced.

Just read this NYT article.

Health Benefits Inspire Rush to Marry, or Divorce
By KEVIN SACK
Published: August 13, 2008
With health insurance out of reach for many, obtaining coverage is factoring into the decision for more couples.

With that, this concludes the 17th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 28, 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, August 26, 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.

Carnival of MS Bloggers #10

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

Presented this week is a 'Top 10' list of absolutely the most necessary tools and armor any MSer must have on this journey called Multiple Sclerosis. Please do click on each post title to read the full text.

#10 - Doctors who Care

The Waterworks Saga, cont'd

My Urology appointment yesterday was brief and to the point. The first question the Dr asked me was how old was I and he commented how much ink there was on the paper; pointing out the obvious, that I have been through quite a bit for my age. Yes I have. Unfortunately. He asked me many questions about my bladder symptoms. After I answered all of his questions he explained that there is definitely something neurological going on. He went even further, explaining that with all of my spine problems, MS and Autonomic Dysfunction, Lupus, why wouldn’t my bladder be affected?

#9 - Personal Advocacy

'Tis or 'Taint?

I told him about falling down the stairs last month and my leg buckling at least once/wk leaving me catching myself or on the floor. He says "may be seizures or black-outs". What should I do for follow-up/safety? "Less stress". Hmm, I'm right on that, Doc.

Bladder problems: "You have four children, of course you will have bladder problems". Well what about the 5 years after last child/before bladder problems began?? I was once the queen of the Kegels before I became the queen of the numbum last fall. He said "you need to see a urologist/gyne and they will test you and teach you exercises. But I don't know any good ones to refer you to, so ask your primary doctor.

#8 - Financial Independence

Kiss My What?

Due to recent events I have been looking into new housing for myself and Princess. I don't spend too much time worrying about whether people would want me or not, but whether I want to rent from them or not. I know I am a good tenant, I am clean, quiet and pay my bills on time. So it came as a big surprise when a recent possible landlord was very concerned about the fact that I am disabled and didn't have any recent references. I have been married for 6.5 years and with my husband for over 8 years -- I haven't exactly been renting anything in that time. She was too concerned by my not working, even though I am able to pay the deposit, first month's rent and even a few months in advance if need be. [...]

But did this matter to said bitchy-possible-landlady? Heck no. She went on and on about having to talk to her attorney about what they would have to do to rent to a disabled person and what modifications would have to be made.

#7 - Gratitude

Rebif in Britain

I found out that I have to pay a charge for it too - the basic price of a prescription, £7.10 [ed. = $13.85, that's less than $5.00 per month] for each delivery (every 3 months). A small price really when you consider that a the starter kit alone of 4 weeks supply comes in at £586.19.

Which brings me on to another topic. Browse through the history of this blog and you'll find a few rants here and there about the fact that not all of the UK has to pay the prescription charge. They are currently free in Wales and are on the road to becoming free in Scotland over the next few years. At face value, it seems we folks in England are getting a bit of a shafting as there are no such plans on the table here.

Turns out there is a hidden side to this. Disease Modifying therapy is nigh on impossible to get for those living in Wales. Had I still been living there, sure I'd have gotten my monthly pill prescriptions free, but I would have been almost certain to not get offered Rebif as a treatment. The reason? The funds just aren't available.

#6 - Patience

Bureaucracy!

I wish they would just make it easier for me--mostly I wish I didn't have to deal with all this, there are enough other things going on . . . but that's beside the point.

So I called Betaplus--to check on my application for patient assistance. They told me I qualified just today so tomorrow I can call their pharmacy and get a 90 day supply delivered. When she told me the price I said my insurance was actually $5 cheaper so I'd go with my insurance.

So, I called my insurance--after lots of automated button pushing--I talked with someone who told me that I could only order a 30 day supply and it was going to cost $60. Now Betaplus was cheaper. [ed. WOW, even with insurance coverage, Kelly could get her DMD more cheaply through the assistance program] It turns out I was going by a quote given to me at the beginning of the year when we were officially under our new PPO insurance but because of Xavier's outsourcing of their health care plans the switchover hadn't reached Anthem so I was being quoted prices for the HMO which we had in 2007. Craziness.

I didn't actually lose money or anything but just all the phone calls makes me insane--So now I need to call tomorrow and hopefully can still get the betaseron through the patient assistance program.

#5 - Persistance in a Broken System

What Health Care Problem? It's a Great System

And the saga continues. Month #3 on my new insurance and still trying to get my MS medications without completely loosing my grip.

I waited two hours, giving them time to finish their task, and called the pharmacy. Voice mail. Wait… wait… wait. Finally, a human being. We went through the process, playing twenty questions, and then I inquired as to the charges. Uh oh. $280 over. [ed. Mandy's monthly copay is already $500] The pharmacy claimed that they have not gotten a phone call from my insurance company since last month’s fiasco. Great.

So, back on the phone to the insurance company. Voice mail system. Wait… wait… wait. I asked for the customer service rep who called me earlier and ended up in yet another voice mail system. I called back and asked for the rep I spoke to last month and, naturally, got voice mail.

Now into Friday evening, I guess I will face the hassle on Monday. Deep breaths, and I shall try not to loose my grip.

Oh, what a pleasure it would be to inform the insurance company that they do not meet my standards and I will bring my business elsewhere! Oh, yeah. I can’t. This is the only insurance company in my state that will give me any coverage at all… and only because it is required to by state law.

Equally wonderful would be the opportunity to choose another pharmacy, one whose representatives treat me with dignity and must court my business. But, again, this is the one and only pharmacy I am allowed to deal with.

It’s a great system we’ve got here.

#4 - Flexibility and Acceptance

Sometimes 'Going with the Flow' is Not Easy

On Day 5 of the IVSM, I was ecstatic to be able to stand-up out of a chair or the couch without struggling or pulling on the coffee table. Yeah!!! My legs had decided to work again. Standing up is such a glorious accomplishment at times.

Meanwhile, my body started feeling loose and free... much less spasticity... how very nice that was. Improvement continued during the 10-day steroid taper and beyond. I even regained most of my sense of balance.

About two weeks ago, only 1 month since the IVSM, I started to find climbing the stairs becoming difficult again. Then a rubber band settled around my right knee, followed by the hamstrings and calves which stayed tight and rigid, impervious to stretching or massage. Soon I found standing up to be strained again.

#3 - Good Friends to Feel your Pain

Prone to Accidents - Destined to Complain

Often times when friends tell me about their pains (both physical and psychological) I am apt to want to help them in some way...offer any medical/nursing advice I think might provide relief...but mainly LISTEN to their experience. I feel badly for them and I also feel NO NEED to try to "one up" them with some sort of a "well you think THAT is bad, I have **blank**". I genuinely feel badly they are in discomfort.

But when my "acquaintance" begins to lament about a new pain? Well...frankly, I want to scream at "them". I have visions of throwing "them" down a flight of stairs just so I can be certain any new pain "they" feel a need to tell me about will be real! I loathe listening to "them" tell about their latest pain. I feel angry. I feel entitled. I want to yell, "I have MS, dayumit! You have no excuse for your alleged pain!" I want to justify my pain by providing a description to "them" just how bad pain really is...and so on. I have a visceral response to my "acquaintance" and "their" constant pain complaints.

#2 - Laughter in the Face of Adversity

Already a Year in This Flat!

Because the agency we were with cut their care down to one 10 minute visit per day we went to another agency and it all went from bad to worse.These people were mostly crap, two were at least nice and with one I did feel safe and we did have a laugh.

Laughing is important but so is good care and attention to details and this is especially important when you are looking after someone who has become so handicapped.

#1 - Joy in the Adventure

Speed Racer on Broadway with Multiple Sclerosis

Go, Scooty, go! I gunned him and rammed the cone, hoping it was not covering a deep hole or unseen drop. The flying orange cone flipped backwards into the street and as we sped off the smooshing sound of Goodyear meets orange cone bad year echoed down the steep Seattle sidewalk.

Things were looking up, or, actually down, from there---clear sailing. As we passed the multitudes of cars idling, spewing noxious fumes and angry honking, the feeling of superiority was overwhelming. Now we were in a section of Seattle known as “Pill Hill,” named for the abundance of hospitals in the area. Zip, zip, zip, very smooth cut-outs aplenty. The other side of the street, looked rough, so we kept our eyes (yes, I said it) open for the best place to cross over. That best place never came. We arrived at the main drag toward home: Broadway.

And now, a bonus 10% more for our Top 10 List.

Visit Chris who has written a book about MS and relationships.

Hi everyone. Within the book "Life Interrupted, It's Not All about Me" I share with readers all the details, including the not so pretty details of my life with MS before, during and after my first marriage. I literally made my life an open book so that others with MS, disability virtually any chronic illness could learn from my mistakes, learn from them and become familiar with the many coping skills about which I speak.

This concludes the 10th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 22, 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, May 20, 2008.

Thank you.

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