Friday, May 9, 2008

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


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.

Comments for this post.


  1. Lisa,
    Thanks for including me in the Carnival this week.

    Reading others from the Top 10 toolkit has been inspirational for me. It's always so good to know we're not alone!


  2. Oh, gosh, thanks for including my scooter.