May 25, 2010

feeling growly

I truly hate being at the beck and call of the disability folks.  Generally, they have been kind, relatively friendly, and caring. But they can turn on a dime and I find it terrifying, especially with this disease and its changeability.
Lately I get the feeling they think I am malingering. And it terrifies me.  They can pull my payments anytime they choose and I am out on the street. Literally.
I'd write more, but it's just too damn upsetting to think about.
Nothing like having a progressive, life changing disease that isn't QUITE enough to make me be considered as disabled. Because SOME days I can move and think.

May 21, 2010

The spotted dogs

Every once and awhile, the reality of having MS and the essential and existential traps it puts one in sends in the depression dogs - not necessarily the black dogs - but the ones with black spots.
Like life.
I hit such a black spot recently. I had had a major flare up of my MS, such that walking wasn't something I could really manage for more than a couple of feet, giving me spasms and twitches and fatigue that knocked me back on my back slumping into that gentle pudding of afternoon slumber...
For the first few days, I was okay with it.  I mean, I've had bouts before, but I'd been lucky - I could usually count on being able to pull myself out in a couple of days, gradually start exercising more, get my life back on track, empty my fridge of the things that had gone mouldy, you know, catch up.
But as the days dragged on and on, I got impatient, angry with myself, petulant, and the spotted doggies started to creep in from the corners, demanding food and a scratch under the ears. I'm allergic to them, so my eyes started watering at the slightest thing: the whine of a Midas Muffler commercial, songs on the radio with words like evening and night and lonely and loss, the delicate ruffles of petunias.  I started getting annoyed, plucking said flowers off and cursing their stickiness, thrashing things around in my fridge, throwing papers around, kicking the spotted dogs til they whined louder. Ineffectually, since my throwing arm and kicking leg were out of commission.  Which made me madder. It's like arguing with a spouse and throwing a tea towel at them.  Lots of flutter, no effect.
I'm a terrible patient, largely because I am terribly impatient. I don't like not being able to do things. I find it unjust.
Eventually, when the dogs get too large or their spots threaten to swallow up what little brightness covers their hide, I contact my "helpers".  They try to help, but they can't give me what I need.
I NEED to feel useful, important, meaningful.  I need to have something to do with my day that gives me a feeling of accomplishment. It's tough to get that done when even moving about takes more energy than you have in the bank. And there's that fine tension between wanting to help others and realizing you just don't want to spend the energy doing it.
I go to a church.  They are lovely people. But now that I am a member, they expect something from me. I don't have it to give, not even the little things like cooking squares. I volunteer, but find I am barely able to push my efforts forward. I fight attaching myself to anything, in case I might be required to do something for someone.
So am poised between the dogs and the wall. Trying gently to push them outward, but not having much effect...

May 14, 2010


Last November, the company asked the FDA not to approve any ANDA for Copaxone until the product is fully characterized. It further maintained it isn't possible for a generic applicant to show that its product has the "same active ingredient" as the drug "because neither Copaxone nor any significant subset of its polypeptides has been fully characterized, and because it is unknown which of Copaxone's potentially millions of protein-like polypeptides are clinically active and responsible for its therapeutic effects in reducing the frequency of relapses in patients with relapsing-remitting multiple sclerosis," according to the FDA's response, available at

Read more:

Ya gotta love being a guinea pig. I've just found out that my dear copaxone may be behind some of my high blood pressure and liver abnormalities. Not that anyone knew about this, apparently. It's endearing to be on medications which even the developer has no idea about how they work. It's reassuring to think they don't actually know WHAT IT IS MADE OF. It's such a pleasant thought to inject this stuff into my body every day while taking a whiff of optimism juice, hoping it will work, having no idea what "working" really means.

I've had experience with this before. I "did" Vioxx for pain before. I was on Effexor, queen of the iatrogenic disease causing drugs, which also remains unexplained as to how it does its magic. I was on Lipitor, until I got leg muscle spasms (might have been MS, now that I think of it), and put on ASA until they realized it would more likely kill me than save me.

And now as I step into my second half-century of life, as medically managed as anyone can possibly imagine, I'm offered these medications, told they are good, given my prescriptions and told to smile and be a good girl and take them. 

Yeah, I suppose on balance they are probably keeping me alive. But really now, folks. Couldn't I just chew on some nice alfalfa?

May 13, 2010

MS and lust, lethargy and lipgloss

Okay, I'll admit it.  I'm a fifty-one year old who has rediscovered the joys of lust after a long marriage where sex was the only medium used to indicate displeasure (unfortunately, ex didn't get that message). Let's just say it was a bit sparse near the end, say the last five years or so. (or 10)

One of the best best things about leaving my marriage was meeting a lovely man that taught me that it wasn't ME that couldn't respond, didn't like touch, etc.  It was the situation that cooled me off. I was overwhelmed with joy and sensation and still love the guy, years later, though he is no longer part of my life.

So I find it terribly unfair that MS has sucked away my sensations in certain, ahem, key areas. Not that it has slowed me down. I argue to my friends that I am so fatigued from the MS that there comes a point on a date where it is just easier to lie down and do something that doesn't require much chat. It passes the time, remains fun, provides physical activity, I don't have to be witty, and the men seem to like it.

It's a bit dangerous, though, as it becomes my fallback position (as it were) when I am tired at the end of the evening. When I was dating more, I'd go out for dinner, say, go for a walk, wander about, then feel, really, I HAD to lie down right away.  Y'all with MS know this feeling.

The men - well, they were only too happy to keep me company. Add to that my main sensations left are located in my lips, and after a few kisses, well, life became rather scandalous pretty quickly.

But, I reasoned, if I don't use it, I might lose it. And, like eating chocolate when I knew diabetes was pending, I felt I should pack in as much as I could before the boom fell and I wouldn't be able to enjoy it any more. Well, they do say MS impairs some cognitive functions, too...

Alas, even using it hasn't helped me not lose it. MS marches on, and now I am a seriously lascivious woman trapped in a body with seriously impaired sensation. I tried to tell my neuro about it and had to revisit it a lot before he (always he, always he) would listen.  I'll just bet if I'd been a man and told him I couldn't get it up, he'd have been all over it with ideas.  But it remains that women lacking sensation is still deemed rather unimportant, despite so many studies talking about how sexuality is essential for intimate relationships, self-esteem, bonding, etc.

I'm still interested, and thank heavens I am in a relationship now with a kind, loving man who seems willing to explore options, but the fact remains there are times when I can't feel him touch me. And no matter how aroused my mind may be, if I can't sense his touch, my body doesn't respond. It's frustrating. I miss that thrill of neurons firing up and down my spine and tickling my lust centre. I miss the feeling of an aroused body. I miss the increasing heartbeat, the warmth speeding to the skin, the hairs raising. It often doesn't happen, and it's definitely not his fault.

It's tempting to give up, but I've never been a quitter...and I'm not quite ready to retreat to memories of my explorations.
But I've had to give up chocolate.

May 2, 2010

Catching multiple sclerosis before it strikes

Catching multiple sclerosis before it strikes

An interesting study (smallish but intense) about the blood markers that indicate MS, perhaps indicate how "fresh" the disease is.
Could be helpful especially in studying progression and treatment of the disease - and might explain how some respond to treatment and others don't - perhaps their disease is "older" even if less severe.
More fascinating research that is adding to the puzzle....

May 1, 2010

and now, from your friendly jellyfish...or maybe not...

So apparently sweet furry animals aren't the only creatures we should be grateful to for MS treatments...still, the thought of being stung by these guys (or bees, another selfless creature in research) is more offputting than my daily copaxone shots...

Chicago -
Madison, Wis (May 1, 2010)-  Quincy Bioscience, the biotechnology company responsible for the development of apoaequorin as a neuroprotective compound, is sponsoring the National Multiple Sclerosis Society in their fight to raise awareness through the Multiple Sclerosis MS Walk in Madison, Wisconsin on May 2.  MS is a chronic, often disabling, disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves.

Quincy Bioscience staff will be presenting and distributing important recruitment information for the MS HOPE Trial, a recently launched study by Quincy Bioscience.  MS supporters can stop by the Quincy Bioscience booth to learn more about MS Hope Trials and how the jellyfish protein apoaequorin may improve the quality of life for those with MS.

Mark Underwood, president of Quincy Bioscience became interested in the jellyfish protein while majoring in Psychology at the University of Wisconsin-Milwaukee.  After reading an article that linked the stings of jellyfish with the symptoms of MS, he decided to pursue this study further.  Underwood explains, “The importance of finding answers is at an all time high.  Events such as these can bring the community together to effectively raise awareness of MS and we at Quincy Bioscience want to bring hope to the MS community.”

Quincy Bioscience encourages the community to come out, raise awareness and support the cause for Multiple Sclerosis.  The walk will be held at Warner Park in Madison, WI on Sunday, May 2, 2010 staring at 9 a.m. and is open to the public.

About The Wisconsin Chapter of the National Multiple Sclerosis Society
The Wisconsin Chapter of the National Multiple Sclerosis Society is a community of individuals who are committed to achieving a world free of MS. The Chapter helps over 10,000 individuals throughout 68 countries throughout Wisconsin impacted by MS to move their lives forward. The Wisconsin MS chapter provides comprehensive support services and educational programs to people with MS, their family and friends, and raise funds locally to support the National MS Society’s research initiatives.

About Quincy Bioscience
Quincy Bioscience is a biotechnology company based in Madison, Wisconsin and is focused on the discovery, development and commercialization of novel compounds to fight the aging process. HOPE Trials is the research arm of Quincy Bioscience.

The company's products focus on restoring calcium balance related to neurodegenerative disorders and other destructive age-related mechanisms. Quincy Bioscience has developed health applications of the jellyfish protein apoaequorin for dietary supplement.

Picture credit: