A Helpful Book

As a youngish and dating woman with MS, one of the things that has filled me with the most despair over the past several years is my loss of sensation in the...ahem...sexual areas. I consulted with my docs, whose recommendation was to place a bag of frozen peas over the...ahem...area in question and that that would help me feel increased sensation.
Well, I dunno about you guys, but frozen anything DOWN there doesn't sound too enchanting for me or the fellah involved. As one friend said, it's like going swimming in the Atlantic Ocean - cold at first, but okay once you're in...
Yikes.
Now, other than developing a jaundiced eye whenever I see a bag of frozen peas in the market, I haven't had much success with that advice. A friend of mine (who works with people with disabilities and their sexual health) and I got to talking. What if we combined the power of her knowledge of everything sexual and battery operated, and my nursing knowledge and the experience of someone living with MS, and we put together a helpful book?
Not a deadly boring one, but a light, useful one, with advice and drawings and some laughter and fun. That. we figured, could be a help to other people like me.
After all, MS is being diagnosed earlier and earlier, and it sounds gruesome to be sentenced to years and years without any idea of how to have a rewarding sex life. We deserve one, no?

But maybe that isn't what's needed. So we thought we'd ask you. In a short little survey, with no chance we can identify you, compiled on machines somewhere in the deep dungeons of the internet, impossible to trace. Well, maybe not completely impossible to trace, but I've got better things to do than find you. There are all those other frozen veggies to experiment with...

Here's the Blurb:

Dorothyanne Brown, a person with MS, nurse, and epidemiologist, and her
writing partner Karen Kalinowski, a Natural Health Consultant and Sex and Kink Awareness Educator, are collaborating to create a resource for people with MS and their partners about sexual intimacy. 

We've created a short survey, ten questions, to get a feeling for what your
needs are as a person with MS or a partner of a person with MS.

The survey is completely anonymous. We have no way to figure out who answers
it, we plan no cross linkage to any database or physician services. 

It will help us create a resource that will be most useful to you. 

Just click on this link and you will be taken to the survey:
http://www.surveymonkey.com/s/LSLN9XN

Please share widely with others with MS or their partners. Help us create a resource that will work for you.
Questions? respond here or email msandintimacy@gmail.com
And thanks!

Why going to the gym is so entertaining, or not...

Okay.
I've been going to the gym seriously for months now. Three times a week, give or take, an hour at a time, weights and machines and stretching and all that stuff. I usually come home and collapse, body in spasm and totally wiped out. The thing with MS is I don't get to progress upwards like "normal" people - as I exercise, I feel like I should be getting better, stronger, quicker ("We can remake her, better, stronger...").
But it just ain't so. One day I cheerily work through a 30 minute elliptical session without dying. The next day I can barely do 10 minutes. I'm trying to increase my walking capability so I can go on this boat cruise in Newfoundland - which involves a 3 km walk through moose and bug infested territory. I can deal with the bugs, but outrunning a moose might be challenging, and I really don't know how they'll react to my walker...but the views look fantastic and I really really wanna go. So I struggle on, pushing my unwilling cramping muscles through yet another session.
Today I got extra exercise plotting the demise of an exerciser on one of those bouncy machines. She was doing extra knee lifts and swinging her arms around in circles and punching up in the air and lacked only the leg warmers to pass for Olivia Newton-John getting physical. She was working on the machine at level 15 and increasing the level every few minutes.
I wanted to push her over.
Just a little bit.
She was so damn perky.
She even had perky HAIR, for gawd's sake. I instantly hated her with a vile passion matched only by the vileness of my sweat as it flattened my non-perky hair to my skull.
What made it even worse is that my favourite gym guy, the one with the sexy accent, was flirting with her. The flirting was bad enough, but what I really envied was that she could do her high fast stepping while swinging her arms and listening to music and flirting back, without falling over! How the heck?
I was falling over walking on the treadmill. Slowly.
Totally annoying. I much prefer the overweight older men who sweat honestly and suffer along with me. We at least have the honour of our suffering.
Couldn't kill her lest I lose the fondness of the sexy gym guy. So I pretended to find her funny while I turned a delicate shade of green. Why the hell didn't I use my body more when it worked properly?
Ah well, too late, she cried, and waved her wooden leg (as my parents-in-law would say). I'm obviously going to have to find another reason to keep going to the gym. Hmm. Maybe this would work...
http://youtu.be/NOMOwyHCHmQ

How exciting the brain...

I always was fascinated by the brain. I remember in grade 12 Biology, I dissected a fetal pig. The day I cut into the head I felt such reverence. Already I was totally awed by how well-arranged the body was internally, but the brain, even the fetal pig brain, was so humbling.
It seems oddly appropriate that the disease I got is all about the brain. It would be so boring to have a sore leg or something. Instead I get to wallow is the multiple glories of a magnificent system going awry.
"It is the most mysterious part of the human body, and yet it dominates how we live our adult lives"
TED remix about the brain

Why all the fury about CCSVI?

Whew. Apparently there will be an announcement about CCSVI made by the NL Health Minister at noon today.

Instantly the chatter lines light up. The CCSVI advocates are hollering again. They yell, they tirade, they do personal attacks on neurologists, the MS Society, the people who work at the MS Society, drug representatives, cardiologists, radiologists, that guy that's walking by the window, anyone who doesn't eat pasta, that annoying mosquito.

It's like as soon as you mention those four initials, you've poured alcohol on a fire.
From my way of thinking, I don't find such ranting persuasive. The pro-CCSVI people are sounding more and more like a cult of late.

We've seen this before, folks. Remember laetrile?

I don't know what will transpire regarding CCSVI and MS. I hate the medications we have to take that we aren't sure will do anything and that cost us a lot in terms of money and side effects (potential and present). I hate the fact that I have to take medications at all. I particularly hate that Copaxone has been fined for overcharging and they, TEVA, just wandered out of the discussion, grinning and patting their fat wallets. While gesturing with their other middle finger.

(But then, I have high cholesterol, too, and pay into Crestor's vast resources while eating potato chips. Thus supporting TWO evil industries. I feel kind of silly grousing about big pharma when I lack the self control to avoid them.)

But interventional radiologists are making money on this, too. They have better press at present, true, and maybe that's because a great many neurologists are, unfortunately, just not nice. Or they are frustrated dealing with a chronic disease for which they have no real hope or answer, despite years of research on it. Brains are, apparently, complicated. Immune systems even more so. Who designed this system, anyway?

In any case, the jury is still out. We're devoting resources to investigating this CCSVI thing, that, unfortunately, doesn't seem to be coming back with positive answers for many.

And any who raise a cautionary hand are being demonized.

This is a confusing disease. It's awful and hopeless and expensive and leads many to suicide. How about stepping back and stopping the attacks, eh, CCSVIers? I, for one, would be more tempted to listen. Right now I wish the whole thing would go away.

Rain, rain, go away...

Well, to be fair, the sun that's been hiding for the last several days is actually making an appearance today. I love feeling it on my skin as I curl by the windows.

No, it's the internal rain that's getting to me.

Battling depression isn't pretty. When part of it is due to organic brain disease, that's even more fun. Sometimes I don't even know who I am any more.

I'm disorganized, I overspend, I do silly things with my short term life choices. Sometimes it's a bit scary as I try to negotiate around the me and me-but-messed-up parts in my head.

I probably should have a keeper, someone to be accountable to. But in my twisted mind, I don't want anyone to play that role.

I feel a bit like a badly behaved horse, trying to fight her way out of a stall, but resisting the halter that would lead me there.

I wish they'd get a grip on what was going on in our heads, we MSers. Some of us have no cognitive or emotional problems; some of us hide them and suffer in silence; some of us display them for all to see.

Last week I bottomed out and I still feel like I'm in an unreal state, not really here, not really present. It's bizarre, like I'm recovering from a bad cold or something. My brain is crowded around with clouds and mist.

Where is that sun?

Goal setting and struggling

I'm heading to Newfoundland this summer. I can't afford it, and probably shouldn't, but I've always wanted to see the glorious island, and I want to go while walking is still possible for me.
It's becoming increasingly evident that walking is slipping away.
My MS seems to have settled in my "spanx" area, neatly encompassing the Monty Python naughty bits, creating numbness and spasms and weaknesses by turns. My hip flexors, while toned, refuse to propel me forward affectively - they pull oddly, knocking my knees off balance and causing knee pain. Right now I can walk less than a kilometre most days.

The boat cruise I want to take to see the fjords of Gros Morne Provincial Park (the one on all the wonderful tourism ads) requires a 3 km walk to reach the boat. I am travelling alone, so getting someone to push me in a wheelchair isn't an option. Instead I'm investigating using my walker, Nordic Poles, canes, etc. And practicing walking in the gym. http://www.bontours.ca/galleries/index.htm

I know I'm strong. Yesterday I carried an over 100 pound exercise bike out of my apartment (with help) and raised it over my shoulders to put it in a truck.

It's just the conversation between my muscles and nerves that lets me down.

So I continue to practice, knowing full well that it may mean nothing in the end, if my nerves shut down.

Back from the gym: managed 15 minutes on the treadmill, 15 on an elliptical ARC trainer, lots of core exercises. It was a good day...today.
Toes crossed it continues.

http://youtu.be/Rqh8Jqu8tIk

Exploring - how do I do it?

I'm plotting a trip to Newfoundland this summer, while I can still walk a bit. But even with the "bit" left, I'm wondering how best to get around. I hate my giganto unsexy walker. It looks old-lady-ish and is huge. A three wheeled one is smaller but doesn't come with the welcome seat. Canes are difficult to manage if you want to use your hands. I don't have a scooter.
Went looking on Amazon to see if I could find a sexy all terrain walker. Yep. It's there. Cheaper one costs tons. More expensive one is around the $1000 mark.
This being a crip ain't cheap.
So I'm emailing the people in Nfld and asking them how I can see as much as possible given my limitations. And they are coming through, charming folk that they are. The place where I'm staying near Gros Morne, Entente Cordiale, gave me a whole list of places I could see "just from your car". Others give me hints of activities still open to me.
I suspect I am going to like this place.
I just wish I had the right equipment to get around there.  Any suggestions?