November 28, 2014

Oh Goodie!

Less than a week to my bilateral total knee replacement and I'm reviewing the inter webs about information...
And I see this one...apparently my sex life will get better post-op. Hmm. Now I just need a partner...;-)

Dr. Tarlow comments:  Common knowledge says successful joint replacement surgery improves life function and patient well being.  Less often addressed but of importance to patients is the effect joint replacement has on sexual intimacy.  Fortunately, good news is seen in this aspect of patient life after orthopedic surgical intervention.  Read on.
From the Daily Mail -U.K.

From  a report from  Rathod P, Deshmukh A, Ranawat A, Rodriguez J presented  at the 2013 Annual Meeting of the American Academy of Orthopaedic Surgeons (AAOS).

 Painful osteoarthritis of the hip or knee can reduce mobility and make normal activities like walking, exercising and yes, even sexual intimacy, a challenge.  New research evaluating the influence of total hip and total knee replacement on the physical and psychological aspects of sexuality found a majority of patients experienced reduced function before surgery. Fortunately, significant improvements were reported after total hip or total knee replacement surgery. 
Before surgery, 147 patients answered questionnaires for the study. Of them, 67% reported physical problems with sexual activity such as pain and stiffness, and a whopping 91% reported experiencing psychological issues, related to sexual self-image and general well- being.
Post-surgery, 116 participants responded to questionnaires and reported significant improvements in both physical and psychological issues impacting their sexual function. Ninety percent (90%) of patients reported improved overall sexual function after total hip or total knee replacement, with total hip replacement patients experiencing a higher rate of improvement.
The post-operative improvements reported were:
  • Improvement in general well-being: 84%
  • improved sexual self-image: 55%
  • improvement in libido: 42%
  • increased intercourse frequency: 41%
  • increased intercourse duration: 36%
People considering total knee or total hip replacement surgery should talk to their surgeons about their current level of activity, and what they can expect for their post-surgery return to activity – in and out of the bedroom.

November 20, 2014

Our blissful socialized medical care...

For the longest time, I've been a ranting promoter of the Canadian system of health care. My experience had always been that when you were sick, you got care. When you weren't that bad, you waited, but eventually you got good, mostly free care.

Cases in point - when my kids wheezed with asthma, they were seen immediately. When my son's ear got ripped in rugby, care was quick and caring. When I lost my sight at the start of a MS flare-up, I was totally mothered. And now that they've found that my knees are destroyed, I'm in relatively quickly to get them fixed. Things still seem to be flowing as they should.

But I'm seeing the changes as I get ready for this knee surgery. Patients are grouped together in rooms now without concern for gender. The hospitals are running at too high a capacity for such niceties as unisex rooms.

I'm asked to bring all my drugs in with me. Presumably they will simply give me my own drugs rather than ordering them for my time in hospital from the pharmacy. I will be bringing in everything I need for my stay, including clothing and whatever.

There are signs everywhere telling me that as a patient, I have the right to ask people to wash their hands before touching me. I find this sad, as it speaks of nurses and docs running flat out and exhausted.

There's no guarantee of in-hospital rehab follow-up care - I will likely get physio twice a week - in the community - if that. Home care nurses are scarce as hen's teeth, and my bed is going to be barely cooled before they fill it again. My son has experiences of "warm bedding" it on the navy ships - I didn't realize this was the case in hospitals now...

Ah, I remember the good old days, when I had the time to rub a patient's back before bed and make them all nice and cozy. Now I'm going to be managing my own pain meds, up and about before my legs figure out they've been traumatized,

I don't think this is necessarily a bad thing. And I foolishly have confidence that if I need services, the system will step up and meet that need, as well as it can. But I'm expecting a Chevvy service, not a Cadillac one.

Mind you, I've never liked Cadillacs. Nah, I lie. I like luxury as much as anyone. But I am still in the category of preferring to have everyone receive care according to need, not according to ability to pay. So I'm not complaining. Um, yet....

Let's hope my wild knee ride meets my needs... (note: photo below is not of my hospital)

Stages of change...

You know, I just get used to this MS thing when my body throws me another curveball. For the past several years I thought my major difficulty walking was caused by my MS. Nope. Knees crusty with arthritis. 
So oh well, I thought. Let's change them up. Get fresh knew ones. Seemed reasonable.
And then I met my excellent and caring anesthesiologist, who described for me what I could be given  to perhaps help me with the expected excruciating pain.

Excruciating pain.

Yep. According to him, knee surgery is probably one of the very worst surgery one could have, and the MS gave him pause about how my pain could be controlled, given the nerve confusion and conduction problems.

I think he was trying to talk me out of having them both done at once. Instead he made me more convinced I needed to get it over with as the thought of going through this twice sounded horrific.

For pain relief' according to plan:
- advance Baclofen to reduce spasms, increase dose significantly for the first few days.
- advance acetaminophen, antiinflammatories, and morphine
- two nerve block shots in the back of my knees
- two ongoing drip nerve blocks for the front of my knees - down low so as not to affect the motor nerves but to cover the sensory ones. My legs are all of 24 inches long in entirety. Given the need for a long incision for the surgery itself, I figure these will end up somewhere near my groin.
- patient controlled analgesia for general pain.

And that's just for the first 48 hours. I'm thinking I should do a liver purge now just to get my cells working.

Plus I'm thinking he wasn't kidding about the pain. 

It's a bit panic inducing, though the doc was so caring and sweet. As is my surgeon. They must see something in my face because they look at me and say, intently, "we'll take good care of you."

It is amazing how much a kind look, a hand on the shoulder, a voice of concern and a gentle explanation go towards easing my fears.

Two weeks from knees...excruciating pain. Ooooh.

 I am taking my aching knees for a walk today to keep them toned.and doing my knee exercises like a mad thing.

And hoping the MS induced numbness hangs around for the next several weeks...

November 12, 2014

Kneeless in Nova Scotia

I'm in a state.
Of what, I'm not sure.
In a little more than 3 weeks, I'm off to have both knees replaced, at the same time.
To say I am gradually becoming awash with anxiety would be true. To say I am dreading pain would be fair, too. To say I am wondering how this will affect my MS would be right on the money.

I've survived surgery before - each time I had a C-section I was up and about quickly and healed up well. I had a baby to look after, too. In one case, three kids to look after. And somehow I managed it, largely thanks to the helpful intervention of my wonderful mother-in-law, who tended to everything while I healed. (true, sometimes she tended too well - I don't ever remember finishing a cup of tea, but at least I had the first inch or so before the cup was washed)

This time, I am even more fortunate. I have a circle of friends who are willing to help out, two grown sons who are pitching in, lovely things, a new apartment designed for such things.

I also have a spine that is damaged by MS, an epidural space that didn't work on my last delivery because there was some damage there, according to the anesthesiologist, and yes, spasmy legs and arms and bum muscles and general bodily pain from this disease that can only get worse with aggravation.

I've read a couple of studies on people with MS having knee replacements. They weren't encouraging. One small study reported acute hamstring spasms that required further surgery. Another reported over-mobility of the knee joint - which made the surgery a failure.

Three people, total. Anecdotal. Not significant. Enough to create a mini-cloud of worry.

Like my friend Tim, who watches airplane crashes endlessly before flying, I've been glued to graphic surgery videos of knee replacement. I can feel my legs being sawed and hammered. It looks positively brutal.

I panic, exercise the joints as they've taught me. Should lose weight but feel the urge for chocolate so strongly as my anxiety rises. So I bend my knees and do exercises as I chomp down milk chocolate. And sip single malt. I'm trying to be smart but parts of my brain have their own ideas.

So why do it? Well, I can't walk without pain. This could give me walking back. I thought the pain was due to MS until I saw my X-rays. My knees are crunchy. With replacement, I COULD get another several years of walking back, dealing only with the MS.

With better knees, I can exercise more. This is good for all sorts of reasons. General health, anxiety, weight management, control of MS.

So wish me luck. I'm taking a literal leap of faith here. With any luck, I'll soon be able to leap better.

August 25, 2014

New Challenges, or isn't it lovely Fampyra takes away some of my numbness RIGHT now when I need it?

Ah, knees.
Those humble, poorly designed bits of skeletal architecture that support our weight and allow us to move and somehow have kind of adapted to us being upright.
Those multi-part pieces of garbage that give out on us with annoying regularity...

Apparently mine wouldn't get much on the Antiques Road Show. I can hear the announcer now, "Well, there has been some damage, as you can see here, and here, and over there, and here, and that WILL affect their value. In fact, they're not worth as much as you paid for them."
"Oh, they were free? Well, that doesn't change my may want to keep them for sentimental value..."

No thanks. Sentimental value isn't much when the thing you are talking about causes pain and mobility limitations.

For a while I was in denial about my knees. I assumed my leg spasms were due to MS, which they are, but what I didn't realize was that my legs were spasming in response to the screaming pain from severely arthritic knees that wasn't making it to my brain thanks to the MS.

Sortof a win/lose situation.

But then I started taking Fampyra.
Hooray! Sensation is creeping back.
Damn. Sensation is creeping back.

So, whereas before I could leap about with gay abandon as long as my MS would let me, now every movement is accompanied by a chorus of groans and winces.
My knees have awoken.
I am forming new wrinkles to cross out my smile lines.

A sucker for punishment, I trotted off to see the orthopaedic surgeon about a replacement. He looked at my X-rays and asked which one to replace, as both are entirely wrecked. So I'm doing them both, at the same time. I figure my docs oughta get a paper out of this, given the combo of MS and bilateral knee replacement. Can't be that common.

It's a bit of bravado, I've got to admit. I am always best running at the high hurdles. Little ones bore me and I can't get excited about them. But this one is significantly terrifying enough that I am actually going to prepare for it, do my exercises, try to lose weight, etc, etc.

Oh yeah, and take my lifelong wish train trip across the country before I go under the knife. Just in case.

July 9, 2014

Blindness revisited, or how MS can spring up and mess with you just when you thought you were coping...

Okay, MS, I've got your number. I know you will make me tired, you'll give me muscle spasms, you'll eat away at my concentration like a deranged rodent. I know some days I'll feel so good people will look at my disabled sticker and mumble and gesture. I'll spring gaily along, overcommitting and overdoing because on good days I am almost manic, trying to crowd in as much as I can.

I know other days kids will offer to help me  as I bend over my rollator. Kids. Of six and seven. And old people will hold open the door for me, offer to carry stuff, fret about me. And I'll spend half the day lying on my couch with the cat kneading me anxiously.

But Cheesus Murphy, as the excellent Kitchener restaurant would say, DON'T TAKE ME F-ing EYES!

It's bad enough about the brain. I spent years and countless thousands educating it and for what? So I can misunderstand simple knitting patterns and never find my glasses? Honestly. If I had that tuition money back I'd spend it travelling the world while I still could, going to Africa and Madagascar and New Zealand and everywhere. Of course, hindsight is 20-20, unlike current sight.

Which brings me to yesterday. I've been having problems seeing for a while now - blurring vision, glasses don't work, etc, etc. I've become used to seeing things with furry edges. I now can no longer read small things without glasses - I'd blame it on age, but it's been a sudden transition, over the past few weeks.

Yesterday, though, I had a recurrence of what sent me to the hospital the first time five years ago - a creeping in of goo from the right side of my head, covering my vision, enclosing me in a swampy impenetrable fog.
Last time, it swept across both eyes, giving me intense claustrophobia. It came, lingered, left. Came back. Sent me to the hospital. Hung around a bit more, left me again.

Last evening, it crept in again, like a migraine aura, oozing in from the upper right corner of my eye, creeping ever so slowly until half my right eye vision was obliterated.

I thought I handled it well. I mentioned it to my companion, quickly, not lingering, in case I was having a stroke and he'd have to spring into action and do something with me. Like a distant foghorn. We continued chatting and working, and I quelled my panic. As with most MS things, there is little that can be done, when it comes right down to it. If I lose my vision, that's it. There's treatment with steroids, which shortens attacks, but really doesn't help with progression. If the bottom drops out of 'er, as they say, it drops out.

It came back, thank heavens and the gods above and all that is good and right in this world.

But it leaves me a little bit more frightened, a little bit more wary, a little bit in dread.
Sometimes I forget I have a progressive disease. I adjust to my current function, think it will always be thus. And then...

And then...

It's fucking terrifying.

June 1, 2014

Multiple holes in my head: Fampyra diaries and how do you know if you are crazy?

Do you remember that old elementary school question about "How many holes do you have in your head?" where you had to remember all the openings through which a bean may or may not be pushed?

Well, sometimes, I feel like there are others, deep vacant spaces with echoes. No beans growing there, but a certain lack of certainty, as it were.


I find the cognitive changes in MS the worst, because HOW DO YOU KNOW IF YOU ARE HAVING THEM????

At least when my legs don't work, I can see that, clearly. From the floor, maybe.

I think of the happy demented patient who doesn't know what he or she doesn't know, and then I wonder...hmm. Am I really confused or am I still mentally sharp? Do I just THINK I am mentally sharp when really I am barely able to mouth breathe?

Or, more alarmingly, am I mentally ill or just getting fed up?
It's almost impossible, mes amis, to tell the difference.

See, I'm generally pleasant. I smile at strangers (which leads to some odd situations) and I am kind to waiters and coffee servers and such. I try to be happy and cheerful and useful and sweet.

But every once and awhile I get angry, or fed up, or annoyed. Like most people. Rather less than most people. And when I let that demon out of the bottle, it seems everyone has to take me to task for it. I don't throw things, I don't hurt people. I get angry, at being misled, or not told the truth. I say things, like "This is where I draw the line". Because, y'know, it takes a lot of effort to figure out the truth when your mind is as foggy as mine. So when someone is deliberately misleading, well, I lose my temper. It's true.

And then all it takes is someone to tell me, "I never said that," and I slip into panic land. Maybe they didn't say it. Maybe I just misread it. Maybe I'm losing it. Maybe I need to plan for regular assessments, a nurse in the home to keep me away from sharp things, etc.

So, I took myself back to school, at my advanced years of 55+. I took myself to a creative writing school, a fairly demanding one. My brain gets seriously tired at the end of a writing day. I often can't even speak any more. Fortunately my cat doesn't expect too much in the way of conversation.

And I restarted Fampyra, trading my financial stability for this last kick at the writing can. It DOES make me sharper. I CAN concentrate better. I can walk better, too, managing a 5 km walk and a 3 km MS walk 2 weeks later.

Unfortunately, it makes me react quicker, too. It's like the Fampyra is lighting up my hippocampus, my limbic system, my amygdala, by blocking those potassium channels.

So I lose my temper quicker, too.
Or maybe some things just are annoying?

I just don't know.

May 7, 2014

Support me in the Scotiabank Charity Challenge today!

Support me in the Scotiabank Charity Challenge today!

I'm taking Ralph my rollator, some best buddies, and my cheery spirit and heading around Halifax for a 5 km walk to raise funds for MS services and research.  The Bluenose walk is a big event and it should be a lot of fun, but the important things for me are the physical challenge and the desire to raise funds for the excellent services the MS Society provides here in the Atlantic Region.

Wish me luck - 5 km is a big deal for me these days! And if you can sponsor me, that would be great!

10 days til lift-off..

March 8, 2014

Running running running, or how MS can act like a bull(y)

I've been hearing about this young lass, Kayla Montgomery, who runs like the wind. She has MS and because of this, as she runs, her body temperature goes up and she has what the docs like to call a "pseudo exacerbation" - her legs lose all sensation and she feels no pain as she pushes herself to the max.

So she can run very very fast, whereas other girls running hear their muscles screaming "no more, no more."

I'm happy for her, I'm glad she's having a good time and fast runs, but I'm a bit afraid for her, too. Our bodies feel pain because they are warning us of potential damage. If she can't feel anything, and loses all ability to stand at the end of her run, is she doing her limbs harm?

I know what I'm talking about. I used to go swimming three times a week. It was wonderful exercise and I found quickly that I could swim 20, 30, 40, 50 lengths of the pool. See, my heart and lungs were okay, and the rest of my body went numb shortly after the tenth lap, so I was in bliss as I swam back and forth and back and forth (and back and forth).

Until I tore my rotator cuff muscle. I've been going through months of physiotherapy and it still isn't better, had cortisone shots and I still can't lift my arm up over my head without pain. I damaged it by overdoing it (I never could swim 50 laps even when I was a KID) and didn't even notice.

Now fortunately, I am numb generally anyways, so the pain in my arm is negligible most of the time. When I feel it, I know it remains damaged. I never know when I will feel it. Sometimes I think it's better and I exercise using it, forgetting that it is still not right, and I end up the next day unable to put my coat on.

So that's why the picture of the bull goring the man...or as mums used to say, "it's all fun and games till someone loses an eye."

I think exercise is fabulous for MS. In fact, I think it is the only true thing that works in MS in terms of delaying progression and keeping able. I'm even attempting self-immolation by trying the Bluenose Marathon in May - a 5 km walk, just me and my Nordic Poles or rollator, followed by the MS walk the weekend afterwards.

I know I'll pay, I'm hoping for the aforesaid numb legs so I can do it without too much agony, but I'm 55. I'm perishing anyway, bits wearing out, stuff falling off.

Kayla's just a young thing. I hope someone is looking out for her, really looking out for her. She's far too young to end up damaged.

February 6, 2014

Once more into the fray, my friends...

May seems terribly far away, as I sit here gazing out at piles of snow and the deceptive sun that hides a freezing wind. But it's slipping up on us...
I'm doing the MS walk in Halifax again this year - I usually volunteer to help out with registration and then haul my sad legs around the route as well. Hoping I can still do that this year.

In honour of the walk, and of my father, who knew how to make every day something worth living, I herein record the joke he used to tell that always comes up in my head when I think of my draggy legs...

Harry kissed his wife and went out for his usual foursome of golf one sunny Saturday morning. When he returned, many hours later, he looked awful - sweat streaming off of him, brambles in his hair, muscles spasming as he walked.
He came in and crashed in the first chair he came to, begging his wife for a drink of anything, anything.
"My gosh, Harry! What happened to you? You look exhausted!"
"Oh it was terrible," Harry said, mopping his brow.
"It must've been. What happened?"
Harry took a long sip of water from the glass. "Well, everything started out fine, me and the guys, gorgeous day, though a bit hot, if I was going to complain...and we'd just started off. Had to wait for the first tee - busy as hell out there today."
He gulped more water.
"Then, we got to the second hole, and doesn't Ralph just up and have a heart attack right in the middle of the fairway! Dropped dead right in front of us."
"Oh no! How horrible," his wife said.
"I'll say. The rest of the eighteen holes, it was hit the ball, drag Ralph, hit the ball, drag Ralph..."

I'm looking for sponsors for my walk - if you'd like to sponsor me and Ralph, please go to my personal page for the MS Walk.  I'd really appreciate it!

January 18, 2014

What now?

So here I sits, like the cat videos, me in a box. A box made of certain limitations, certain walls, some openings, some slides and ladders.

I'm not limited enough that most of my day is spent dealing with my MS, and for that I am absurdly grateful.
I AM limited enough that a large proportion of my day is affected by my MS, and for that, well, I am grumpy.
I have had to retire, from an interesting and challenging career. I left work at 50, after staying home with my kids while we moved around for years for my husband's career. I don't begrudge staying home with the kids. I don't even begrudge moving around. But I feel as if I haven't had a chance to show my abilities yet. It's frustrating to get to a place where things were interesting and then find myself unable to do them anymore. And five years in, I'm starting to wonder what lies ahead.

I had a lot of fun working, using my creative mind on problems. I made a lot of mistakes, I had a few successes, I LIKED it. And then I couldn't do it, I couldn't remember what I was doing, I was so tired I could barely walk, I became hyperemotional and had a breakdown from the disease.

It's more common than you at first hear. I should have known, when I was diagnosed with depression, that my brain was wearing out. I've never been depressed in my life. Until MS came along. Now it's something I battle daily, along with fatigue and pain and decreased mobility.

But I'm young yet. I'm just 55. With luck I have another 25-30 years ahead of me - to do WHAT? There are only so many crafts. I've tried writing, I don't have the mental stamina for it. I volunteer, and I can continue to do that, provided I can have a nap regularly. But is it enough?

I don't know. I search on, looking for some way to make some sort of contribution.