Trigeminal neuralgia, or the joys of a rictus grin

TN, both acute and chronic, is a frequent gift from the Mad Sow.

"Trigeminal neuralgia (facial pain) is characterised by brief episodes of intense, stabbing, electric shock-like pain on the face. These episodes occur spontaneously or can be triggered by light touch, chewing, or changes in temperature (i.e. cold). The pain is so intense as to be completely disabling. In addition, weight loss is common because oral triggers prevent affected individuals from eating enough to maintain adequate nutrition.

A less common form of the disorder, called" a typical trigeminal neuralgia", may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs."

Okay, this is all very jolly, as is the comment that it is a very treatable condition. Surgery, medications, nerve assassination all can help...however...

First, one has to see a doctor to have it treated. As my MS clinic makes a game out of not seeing patients, this seems unlikely to happen in my case.

Secondly - weight loss? Well, that could be true - fact is, with the pain and my difficulties in swallowing, there are few things I have the will to eat. Unfortunately, ice cream and mallomars and fudge and wine and beer and all that fits sweetly down the old gullet...So I have yet to notice any advancement in my weight loss goals. Alas.

What I do notice is fatigue and pain when I have to talk, always present facial pain, total facial numbness, and the feeling of dropping ice cream, mallomars and fudge out of the corner of my mouth....smiling, one of my favorite things, needs to be paced during a bad stage, or I live to regret it, with needle sharp pain up along my eyes and into my nose. I have a constantly running nose and frequently running eyes...

("Does your nose run and do your feet smell? Why, you're built upside down!")

It's SO attractive. Of course, I probably feel it more than it is visible, but on days like today I feel like my eyelid is drooping, my lip is spasming, and my cheek is protruding into space.

On the good side, I've lived with the pain for so long that it is no longer completely disabling. It's just a constant undercurrent, sometimes more turbulent, sometimes calmer. It's hard to believe it has been my constant companion since 2002. It snuck in, feeling like a gentle caress on my face, fingers stroking my cheek like an inattentive lover to the point of irritation. Then sharp pain along the line from ear to nose. Then tearing, and lip numbness, and hearing problems, and all along a sneaky chronic pain that I live with until an unwary smile knocks my socks off with a fiery line from ear to face.

Unlike my other varied MS symptoms, I don't ever enjoy this one. Some of the others are kindof amusing for a while, but I suspect that's because I never know what I get next. The ones that hang around lose their amusement value. So far I have this facial pain thing and now chronic spasticity in my flexor muscles in my legs. I'm getting bored with both of them. I'd ask for a new symptom, but I'm afraid my body would agree!

j'ai perdu le fil - or ccsvi and MS

Or is it: Ich habe den Plan verloren (I've lost the plot)?

Okay, reality is I was thinking of the threads of life with MS and then I went looking for a photo to use and there was this lovely one of Frances and her ball of string from Minnesota, and well, I just had to include it.

In any case, I haven't been posting because I've been like a kitten with Frances' ball (or perhaps a more manageable one) around this whole venous insufficiency cause of MS thing. One moment up, another down, one tangled up in hope, another tied up in cynicism.

On the one hand, it makes logical sense. As one commentator said, we've always known MS was an inflammatory disease, but we just didn't know what caused the inflammation. Makes sense that the iron deposits in MSers brains might stimulate some inflammation, eh what? And the refluxing thing seems reasonable in terms of laying down more iron than should be there. In any case, it all seems promising, just (alas) not right now.

On the webboards, there are hysterical requests for "where can we get this done now!" that sound very much like Veruca Salt in Willy Wonka. We don't even have ultrasound thechnologists who can do the assessment properly yet! And no one seems to be thinking about the risk of having a loose stent flowing right directly back into your heart...from the very pliable and easily torn venous tissue. But, like the gruelling stem cell research that several have gone through, if it appears to offer a solution, we want it NOW. I was just at an education evening about stem cell research where everyone was begging to have their immune system destroyed in the hope of some recovery. Two weeks alter, now everyone is begging for something completely different...

And there are the conspiracy theories about why we haven't heard of this before now - the "big pharma" companies and neurologists are in some evil conspiracy to keep us hooked on their drugs forever. Well, yeah, big pharma stands to lose some cash if we all get healed, but it's gonna take a while, and I imagine we'll still be taking the drugs for the foreseeable future, given that the iron won't be leaving our brains anytime soon, even if our veins work better. We'll still need dampening of our immune reaction to it.

Reality is, research in MS is charging forward at a great rate. I am quite amazed at the progress made in the last 10 years - heck, it's no wonder mine wasn't caught until just recently - it wasn't even well known when my symptoms arose. Even now, most docs know nothing about it. In the past few years, we've been given some real tools to delay things - a good thing while they work on the cure. The cure will take time. Unfortunately.

This leads me to resign myself to my probable fate. Perhaps this means I am not fighting enough for access to care, for treatment, for whatever. But I don't have faith in any of it yet. I dutifully take my Copaxone, while feeling it is doing no good, because it's the only alternative at present. I haven't noticed any reduction in flare-ups, really - in fact I am getting worse.

But fighting takes effort, and is wearying. I am too tired to fight with the medical system for unproven remedies. I'd rather exercise, try to keep well, rest, than take thousands of drugs for every symptom. And watch for chances where I can contribute to the research, to help, if I can, the 1000s behind me who are still young, who are still working, who have families still to raise. Yeah, I could push to the front of the line if I wanted to, maybe. But I remember being whisked past people holding their entrails in so I could get a CT scan quickly when I lost my vision. I felt foolish then. I'd feel foolish now. I can still walk; so many can't. My kids are grown; others' aren't. My parents are gone; others have parents to care for also. I can wait. And work on my own ball of string.

Quicksand

Quicksand arises when there is flowing groundwater passing through a sandy pit that keeps the sand from compacting. When you hear this, it takes away the mystery of the whole terrorizing quicksand of the movies - the stuff that lies, unremarked, for years, until the bad guy passes by and is consumed. Often it's just the extra that gets sucked in, the infamous "black guy" in Star Trek that accompanies the bigger stars on a planet explore, only to die gruesomely.

Lately, I've been feeling that quicksand-y feeling. It's all part of figuring out what I should be within the framework of my illness and limitations. I no longer have a job, or the mental stamina to think about that job anymore. My children have grown up and they rarely need me now, I'm divorced, I live alone save for a feisty parrotlet named Dora. I write, but I don't know that I write well, or that I have anything meaningful to say.

I purposely moved to this city to force myself to deal with the anomie, to face it head on instead of hiding it behind old friends and things. I wanted to wend my way, find firm ground under my feet.

It's not easy. I find toeholds - good friends that support me, family who care for me, a sweet man who loves me, but the toeholds are still slippery, and I don't fully trust them. I need to find a place to put my foot flat down, to find myself again, to find a purpose for my life, so I don't feel as if I am just using up oxygen and resources (primarily chocolate, but never mind) with no output.

Is it enough to just live and be thankful for that? Is it enough to read and appreciate, and see and appreciate, and move and be thankful? I think we have a responsibility to do more than this.

I try, in my little ways. I try to be cheerful, to bring smiles everywhere I go. I offer little helps. I want to offer bigger helps, but resist because I am no longer a dependable worker. My skill set is rapidly deteriorating, my new skills are slowly developing. And gently, inside me, my MS is slowly dripping to take away the sand from below my feet.

How do disabled people find the will to go on? How do they continue, when they know they are no longer contributors to the sand pit of life? Do they rest on their laurels, as I have been counseled to do? Do they find ways to remain contributors, despite their increasing loss of ability? When do they decide to stop fighting the quicksand, and let go? (which, by the way is supposed to be the best way to stop sinking, so perhaps the Buddhists have it right after all)

I'm learning to stop kicking, but it's hard. I've always been a kicker. I've lived my life as an advocate, a change agent, a promoter of others. This giving in to a disease that cannot be seen and that changes day by day is so hard.

So while I'm trapped, I'm thinking. I don't want to be an "extra" in this world. I still want to contribute. Now to find the direction. And then to wriggle slowly, carefully, over to the dry sand.

Some days you're the tire, some days you're the road

I am so sorry to whine, but for the last month or more, I've felt just like the poor mouse in this picture, shaken back and forth by my MSCat. It just won't let me go, and plays with me and tosses me between its paws and chases me when I think I've got away for a bit.

I can hear it purring with the enjoyment it's having with me.

Last night, in amongst my leg hiccups (back in full glory, darn it), I felt something new - the teeth of the MS, as it bit on my leg. The touch of the sheet was agony. Liquid fire burned up and down my right leg, causing me to gasp out loud. All of my nerves were agitated, so that the touch of a hand was an acute irritant. Even the gentle, caring touch of a dear friend.

Sometimes, I can pull it together for short periods and seem almost fine. I can laugh, chat along with the rest of them, go to events, make love, eat foods that require chewing.

But EVERY TIME, I have to pay for it. EVERY f*^&^%*ng time. After every fun day, I have days of exhaustion and pain. After every laugh, I have a moment of sorrow.

It's almost enough to make a gal give up and decide just to sit about and watch reality TV, especially on days like today when my brain is fine but the rest of me, from my throat on down, wants to pack up and go to Bermuda - and you know what? I'd send it, if I could. Even for five minutes.

Argh.

Unfortunately they are connected, my mind and body. And the final laugh is that my mind is what is wrecking my body, as it degrades. It's all so ironic, for the gal who spent a lifetime working on her mind...

On the good side, whatever wrecks things in my brains also makes me appreciate the wrecking, like the mouse admiring the artistry of the cat as it tosses her up and down, catches her by the tail, whips her about in glee. We are marvelous things, hunters and hunted.

So for today, I'll watch and admire the killing dance. Tomorrow, I'll try to escape again. After all, the cat expects it.

Chewing on aggravation

I am feeling testy, or rather, close to royally pissed.
First, I call "Service Canada" after their threatening letter about my CPP stuff - which I sent them yonks ago and which was screwed up due to their staff's stupidity, so I have to settle it again - and they talk to me like it is all my fault for being a lazy so and so and why HAVEN'T I got those forms in yet, despite moving, errors, MS and all that.... Grrr.

And then there's the having to rent a car so I can get to a doc appointment 2 hours away so he can sign the forms that declare me disabled STILL for a disease that is never going to go away and seems never to be getting better, but I must verify it with my doc every three months notwithstanding this and I still don't have a doc in my new town...

Then I keep running into people who minimize what I am going through, tell me to cheer up, remind me that after all I could be hit by a bus tomorrow (you know who you are) which I KNOW is meant to be comforting, but which has the effect of making me feel my current, very real difficulties are of no matter whatsoever. Yeah, I sure as hell know it COULD be worse. That doesn't mean it isn't pretty bad right now. Of course, no one can see the pain I deal with, or the muscle spasms, or the discussions I have with my bladder, or the fatigue that pushes its way into my consciousness all the time, rendering me speechless.

I knew one fellow who told me I should be rejoicing in my "Freedom-50" - not having to go to work - when really I'd work in a salt mine if I didn't have to deal with this thing and live in ever increasing poverty...

And then there's just real life annoying me - huge bank charges, the cost of a good bar of chocolate, you know. The stuff everyone has to deal with.

Maybe it's cos I've lightened my antidepressant. You see, I was unable to cry. I know this seems like a good thing, but it's one thing to not want to cry, and it's a completely other thing to want to cry and be unable to. It's all part of the numbness (which, I might add, has become totally encompassing again now, making me want to fling myself against hard objects just so I can feel something, anything, other than the interior muscle pain that exists related to nothing). I can't bear it anymore. I need to sense something. So I'm cutting back, and the result is that I don't go around with beatific smiles (which, frankly, were beginning to freak me out) all the time. Now when I smile, I mean it, and it's not just some sweet nimbus-type glow.

Maybe I won't be so endearingly pleasant all the time. This probably isn't a good thing. And maybe I'm in a mood just cos I went to a MS Society thing last night and saw....and became afraid.

Life sucks. And then you don't die. And it sucks forthwith.
Okay, enough grumping. I'm off to do something practical and giving and sensible - volunteering. I'll be better soon. Sometimes, though, I should be allowed to be grumpy, pissed off, annoyed at this turn of events.

a bag of trouble....

I feel a bit like a bag of calamaties today. It's a beautiful fall day, leaves dancing in the streets to the directions of the wind, an aluminum can spinning dervish-like along the road and executing Michael-Jackson-like poses...
The walk along my road was breezy and sunny, filled with people enjoying the respite from the rain, saying that big city exhalation of a hello as they walked by me.
I was focusing. I think I have figured out where the next big lesion dwells. It's got to be on my left hemisphere, as I am developing foot drop in my right foot that makes me need to concentrate when walking or trip. I have foot spasms in both feet, but the right one is much more extreme. My right bum is knotted up, and completely numb. And the left side of my face is in spasm and pain, eye tearing all during the church service I attended.
Add a chronic neck pain on my right side and I could wallow in self-pity for hours. Instead, I wish I could peer inside my head, see what is going on, tease out the frayed nerves and wrap them with electrical tape...would love to know what is happening in there...so that at least, as I curl up my feet to keep them from dragging on the ground I could feel slightly in control.

Let's get physical....

I'm feeling a bit bound up. No, haven't been taken hostage, or involved in some unusual nefarious activity...
I have an elastic band about my waist, holding a pedometer and an accelerometer - part of a physical activity study I'm in from the University of Oregon. It's a well-organized study so far - they are making me wear the machines for a week to establish baseline activity levels and I fully expect we shall be doing goal setting and all that based on these levels to help me increase activity. I'm familiar with the pattern, having created a pedometer-based walking program (or, rather, adapted an Australian one) for public health in Kingston that then spread across the province. It is funny to see it flip its way back to me.
There's a different aspect to this program, though. Whereas I had regular classes with my groups, in this study, they are linking us through SKYPE to counselors who presumably will advise us on how best to be physically active with our various MS challenges. Could be interesting. Already the webspace is filled with documents I haven't seen before, about stretching and exercise and MS. I am thrilled to be in contact with someone who MIGHT, presumably, know something about the disease and be able to guide me. It's been a long lonely struggle and I am tired of reading info in books and trying to figure out everything for myself.
And while I've made good use of "Patients Like Me" for information about various things, exercise doesn't seem to be a common topic. Either people are training for mountain climbing, or they are too immobilized to do much. What about those of us in the middle?
Hoping to learn ways to stay as healthy as possible....