2016, The year I can’t wait to see end.

Warning:  This post is pretty much venting on my part.  The picture I chose has nothing to do with anything I said, but it was just too cute not to include!

On the minute chance that anyone noticed, yes, I did take down my rambling post from a few days ago. Note to self… Do not engage in blogging when utterly exhausted. 

Anyway, yes, it’s true.  I really cannot wait for this year to be over. With the U.S. election finally being over, I expect I’m not the only one.

Really America, what happened there?  Why on earth would you put that man in the White House?  These are of course rhetorical questions that I don’t expect, or want, anyone to answer.  What I do know is that some of my American friends and family are justifiably worried, especially those in the LGTB community.  And I’m worried for them.

Aside from the rambling post I left up briefly, it has been nearly a year since I’ve posted anything.  My plans for this blog haven’t gone as originally planned.  Part of the reason for that is the same reason I don’t blog under my name…real life drama that follows me online.

Speaking of which, on what world is it okay to attack your child’s chosen spouse every single damn time you talk to your offspring?  You don’t have to like or approve of your children’s choice in spouses, but you sure as hell can show some basic courtesy.

In other news, my world has been turned upside down this year…

In late February, we lost the last of our senior furbabies.  Aries has turned 15 about 6 weeks before we had to say goodbye.  His kidney disease, a common condition in older cats, progressed faster than expected.

Understand that until the day we had to euthanize Aries, I had never lived a single day of my entire existence – and I’m in the latter half of my 40s – without having at least one cat.  

This is a huge paradigm shift in my world and frankly, I hate it.  I’ve already had my life shrunk that of a hermit where the internet is my only regular connection to the outside world.  The single biggest factor that has seen me through so very much, especially through a lifetime of health issues, has been my pets. And now they are all gone.

We talk about getting another kitten or cat, insured of course, but for reasons I won’t bother going into, I doubt it will ever actually happen.

That’s it for now.  Thanks for reading.

Does Time Fly By, or Crawl By?

RAMBLING ALERT!

I realized after writing this, that I rambled a bit…oops! 😀 Also, I tried repeatedly to just show the Summary where folks could click on “more…” if they wished to continue reading instead of one long post. But in months I’ve been away, they changed that several functions and I can’t quite figure it all out yet. Sorry about that.

Moving right along now with the actual post…

The concept of time really has me all screwed up this past year.  Sometimes it seems to fly by so fast I get windburn, but at other times I could swear it stopped altogether!

It’s been a year now since I started this blog.  So many wonderful people immediately welcomed me to this wonderful online space that is WordPress, and for that I will always be grateful!

I’ve had so many false starts and still haven’t used this blog as I originally intended…

You see, this blog was (and still is) meant to be my space.  The place where I could say whatever I wanted, about any topic, and not have to constantly worry about how people in my “real” offline world would react.  I’d kept so much bottled up for so very long, just trying to keep the peace, that I thought I might go completely bonkers.  Or postal…

I had, and still do, tons of thoughts and ideas rolling around in my head.  Getting them onto paper (so to speak), where other people could actually read them, has proven a lot more challenging  than I had expected.

In one sense, blogging is a lot like journaling, but then again, it’s really not.  Over many long years, I’ve filled countless paper journals, but coming up with a post that wouldn’t later make wish I could crawl under a rock and disappear… 😳  Well now, that’s just a whole different ball game!

Which brings me back to the title of this post, “Does Time Fly By, or Crawl By?”  Speaking for myself, I would have to say both.  (As I suspect it does for almost everyone. 😉)

When I started this blog it had only just over a year since I was diagnosed with MS (Mulitple Sclerosis). As I state right in the “About Me” area of this blog, the diagnosis was decades in the making, and when I started this blog, I was still very deeply buried in the angry phase of grief.

Angry that I’d been ignored by the medical field for so very long.  Angry that even with irrefutable proof glaring back from the MRI scans that not only did I have MS, I’d had it for a very long time.

Angry that still, it wasn’t good enough for some people in my life to believe I wasn’t a lazy cow and hypochondriac.  Yeah, well I don’t talk to those particular people anymore.  Family or friend, they had to go.

Furious that my GP (family doctor) still did not, and to this day still does not believe my various symptoms are as bad as I say. Furious that he refuses to educate himself on studies taken over the last 20 or so years proving beyond a shadow of a doubt that yes – unlike decades of the incorrect assumption widely accepted by the medical field worldwide, that MS is essentially a painless disease – which he still believes to be true. Yes doctor, MS DOES cause pain, in many cases a lot of pain.

Unrelenting, never breaking, drive your nearly to the point of insanity kind of pain. Even my neurologist has told him so, and stated that I need better pain control to have any decent quality of life. His answer? Nope! Almost a year ago, he cut back what I was barely surviving on to less than 1/2 the dose, and recently made another small cut in the number prescribed, and again, without consulting me or the neurologist. I have barely left my home at all this past year. I made it to one movie with my husband and a friend, and all other “outings” have been for various doctor & specialist appointments, and medical tests. And for those I have “outings” I have to portion out my meager supply of pain meds to get through the day, yet each one still costs me anywhere between 2 to 7 days in bed recovering. (And no, there is still no option to find another GP where I live.)

Angry that year after year, decade after decade, my health continued to decline, my disability to accrue, and still, no-one could be bothered to take me seriously.  Seriously enough to do the one single test that would have shown what the core bloody problem was to begin with!  God knows I’ve had every other invasive and embarrassing test done, repeatedly, over the span of 30 years. Hell, despite now having enough proof to convince even the biggest skeptic, my GP still doesn’t believe the MS is not new or, that most of my symptoms are very real.  (Though I suppose after he spent nearly a year convincing me that all the various specialists I was sent to until that fateful MRI was finally done and analyzed by one of the country’s top MS specialists, who was shocked no one had done one before given my medical history, categorically said no more tests were needed.  That first set of MRI scans left zero doubt in his mind that I had MS and had had it for a very, very longt time.  Once my GP got that report he could no longer deny the truth, but over two years later is being very selective about the severity and the length of time I’ve had it.  Still, for him, that’s actual progress!)  Sadly though, he still balks at treating anything related to the MS and the neurologist can’t see me nearly often enough to write prescriptions or handles relapses.  So for the latter, and when the pain drives me to a breaking point, I go to the ER. Which the ER hates because it’s a huge waste of time, resources and taxpayers money, and the GP hates for the same reasons.  Except in his case, it also makes him look bad for refusing to treat the pain appropriately, or prescribe steroids for the relapses – neither of which he thinks are nearly as bad as I “claim” them to be.

Angry that even most of my family didn’t care enough to believe me, before or after finally getting the diagnosis.

Obviously I still have some anger around all this.  (Okay…a lot of lingering anger…😃) I suspect I always will.

But, I am finally learning to accept the things that I cannot change or control.  In some cases, that means letting go of the very people who are supposed to love you unconditionally.

In my case, it meant facing the fact those family members who rejected me as soon as our mother died and my services as the the family caregiver, general lackey and whatever else was needed…then again rejected me when I was diagnosed, terrified, angry and feeling very much alone and unwanted…  After several miserable months of trying to find out why they hated me, and did they ever truly love me….  Finally, I had to face the truth.  No, they never did care.  We were raised in the same house, by the same parents, but I truly was the little sister they never wanted

So I’m learning, albeit at the pace of a dead snail, to let them go. And as for my GP, I’ll just keep gritting my teeth while looking for a new one. The doctor shortage around here can’t last forever…I hope.

So in terms of things I can’t change or control, time crawls by.  So slowly that at times I’d dearly love to kick in the arse and scream, “MOVE, DAMN YOU, MOVE!”

But at other times, it seems to truly fly by so fast I that I can’t even catch sight of it.  In the last year I’ve had so many ups and downs, that at times I feel like a basketball being dribbled across the court of life!  The downs have been excrutiatingly slow and seem to drag on forever…but the highs, as brief, small and fleeting as they might seem, have been nothing less than wonderful!

In the last year, I’ve rediscovered a couple of true friends I had thought lost to time.  They, along with a couple newer, but not brand new, friendships, have helped kept me sane and made life worth fighting for.  I’ve finally accepted the fact that I can’t go on pretending I will somehow get better one day, and must accept and use, physical aides if I’m to have any kind of life outside my bedroom walls.  (Now, if I could just talk the landlord into replacing the stairs with an escalator…😉)

Okay, so this has turned out far longer than I intended and upon re-reading it, much whinier than I’d hoped.  But hey, the good news is I’ve finally written a post of my own and not another re-blog!

I sincerely hope everyone had a great, safe and joyful holiday season and that you and yours are all doing well this new year!

Cheers!

Sigh. MS sucks!

Yup, I’ve been away for a few days.  Like the post title says, MS sucks.  Big time.

I’ve actually been in the thick of a relapse for a couple of months, but as my GP refuses to treat anything to do with the MS, there isn’t much I could do about it.  My first clue was when my left eye started acting up again a couple of months ago.  Then a couple of weeks ago I woke up one day with horrendous vertigo that just would not go away.

I know I should have long since gone to the ER for help, but I’m so used to being told that’s not an appropriate place to seek treatments for relapses. I should see my GP, they tell me.  Really?  But he says no, call your neuro or go to the ER.

If you’ve ever had to see a specialist, you know it’s not like you can just call them up get an appointment in a few days.  Months, maybe.  Hell, where I’m at, you can’t even do that with your family physician.  (If you’re lucky enough to even have one, that is.  Your insurance or lack thereof, makes zero difference anymore.  There simply aren’t enough of them practicing here, and the ones that do seem to actively avoid anyone with a complicated medical history.)

A couple of weeks ago I woke up with horrendous vertigo that would not go away. Walking was nearly impossible.  So, after a long scheduled test for another MS issue at the hospital this past Thursday, and after coming close to braining myself in the shower that morning, off went down the hall to the ER.

Fortunately, there was a neuro who works with mine on duty, and he soon had me hooked up to what ended up being a three-day course of high dose of IV steroids.  I can walk again.  Yay!

This is the first time anyone has bothered to treat a relapse, so as tiring and frustrating as going back and forth and waiting for hours to get plugged back in, I’m most happy to be walking again.  You know, without falling and bashing into every wall.

Okay, that’s my TMI post of the week!

Cheers. 🙂

Why I Blog…

Or more accurately, why I blog the way I do.

What with all the various reblogs on a wide range of topics that I’ve been checkering my blog with since I started a few months ago, some might wonder if I have an actual purpose in mind.  A voice, so to speak.

To be honest, the only real goal I had when starting this blog, was to have a place that was mine.

A place that where I could speak my mind and not have to worry about what other people are going to say. That’s the beauty of being able to write anonymously, and to also having the power to approve or deny comments.

You see, I am fully aware the very people I don’t want to ever find out about this blog, may eventually do so.

And despite the fact that I have not yet, nor have intentions of ever doing so, slamming them in any way – or returning the “favour” of saying about them all the nasty things they have said, and in some cases, continue to say, about me – I cannot bring myself to stoop to their level.  Though it is, make no mistake, bloody tempting at times!

I wanted a place where I could tell my story, and be heard, but not judged.  In the short time I’ve been here, I’ve been welcomed and encouraged by so many wonderful people.

I hope I can be as supportive of them, as they have been to me.  And I hope to support and encourage other new bloggers.  Eventually, I hope I can gain the courage to tell my story.  I’m not seeking sympathy, just compassion. And connection to other people.

I do have some wonderful “offline” friends. They don’t judge me or my multitude of health problems, and their unwavering support – especially in the last few years as my life has been more or less imploding around me, has meant the world to me – but they all have busy lives.

It’s hard to stay positive when your own family betrays you, cuts you out the minute you are no longer useful.  It’s hard to stay positive when others – who you are powerless to completely cut out of your life – spend so much time calling you filthy names, gossiping about you and in general, do their level best to break up your marriage.

It’s hard to stay positive when you are in pain 24/7, year after year.  Especially when despite have excellent medical coverage, you still can’t get the medical profession to care enough to help you.

As to the question of why I’ve been reblogging so many posts from other blogs, the answer is simple.  I reblog posts that I feel need to be shared as widely as possibly.

Oh shit.  Please pardon my French, but I’m having yet another on of “those” moments right bloody now.  I’m going to do something I don’t normally do and actually hit the Publish button, rather that leave this the Drafts pile with all the others I’ve written, but never actually posted.

 

Mental Health Awareness Week: Why is awareness so important?

I came across this blog post earlier today. It struck a chord in me. Perhaps I’m too sensitive, or cynical, or both. It’s been my personal experience that those who really and truly need to “get it,” are the ones least likely to ever open their minds.

I struggle with depression. I don’t know – or care – what came first, my physical or mental health issues. What I do know, is that despite living in the Information Age, people are often willfully ignorant. Look, I don’t want or expect people to know the minutiae of the challenges I face each and every moment of every day. What I do want – and wish I could expect – is for others to stop expecting that it’s okay to dump their beliefs and expectations on me.

If I do share with you that I’m having issues when outside my home, it’s generally just a courtesy on my part. It means I’m sharing in the hope of less judgement than I normally face. I don’t want people to think I’m intoxicated when my balance goes or my words start to slur, so if I’m out with folks I don’t know that well and I notice something is about to go wonky, I state then and there that I have MS. It is not – let me be very clear – an invitation or cue, for anyone to proceed peppering me with questions, sharing the so-called medical wisdom, or to pass judgement. It is not a case of my pulling the sympathy card. I just want the people around me to know that I’m not plastered or high.

If my depression gets the better of me while out in public and you don’t live the expression on my face – or in my case, lack thereof – it does not give you, family, friend or stranger, the right to go off on me. Period. You don’t like the look in my face?  Here’s a tip, don’t look!

p.s.  And please, stop comparing me or my case to other people.  Believe it or not, I am fully aware that literally billions of people have a much, much harder life than I do.  And I know that many of them still manage to put on a happy face and be an inspiration.  Guess what?  I am doing the best I can.  If that’s not good enough for you, then it’s your problem. Not mine.

#BlackDogRunner

I’m not sure if you’re aware, but this week is Mental Health Awareness Week. For those who spend much time around me, this must sound rather exhausting. Barely a week goes by where I don’t moan about my symptoms, complain about stigma, or behave in a generally ‘mental’ way. Rather than another week of raising awareness, I suspect many of my friends would prefer a Mental Health Ignorance Week. Where I’d be induced into a state of quiet normalness, and the rest of the world could continue… Well… pretty much as normal.

"Ignorance is bliss" “Ignorance is bliss” (This is one of my favourite pictures on the internet – I don’t know the original source)

And – if I’m fair – I’d have sympathy. For a start, I know how boring I can get when I feel motivated to speak. It’s like a terrible episode of Question Time, where the most annoying…

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This is what you call “not helping your case”

This is UNACCEPTABLE! A garbage diagnosis? Gee, where have I heard that before? Oh, wait I know… When my doctor said the same thing about my MS diagnosis. I have heard variations of the same kind of misogynistic bullshit from more than a few “doctors” before. F**k you, Dr. Drew. How DARE you immediately jump to such absurd conclusions based on a three minute phone call with the patient’s fiance? That’s ethically and morally wrong.

Some interesting screengrabs of Tweets from Drew Pinsky, his wife Susan, and the ditch they are digging themselves into more and more today with terrible handling of Pinsky’s misguided (at best) comments about endometriosis and IC during the Loveline show on Thursday night.

Apparently the situation at hand may be discussed on his show on Monday, April 28. We shall see. Even if it is, Susan Pinsky makes it sound like we’re in for another shit sandwich.

To follow what’s going on, you don’t even need to have a Twitter account. Mine is twitter.com/endosucks (or @endosucks if you do have an account). Drew Pinsky is @drdrew, @loveline and @drdrewHLN (yes, he’s on CNN too), though he does also have others (like for the podcast). Susan Pinsky is @firstladyoflove.

If you want to respond, tweet at these accounts, and/or use the trending term #educatedrdrew.

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And then this treasure happened. Why…

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Multiple Sclerosis: The First Two Years.

Valariamsouza hits the ball clear out of the park describing her first two years after an MS diagnosis. She very clearly states what it feels like when your own body attacks itself…when it eats you from the inside out. And what it feels like to be utterly abandoned in your time of the most need.
I’ve already thanked her, but I’m going to say it again…THANK YOU, Valenciamsouza, for giving us and this horrible f***ing disease a voice!!!!

It's complicated.

What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.

I’m hungry.

I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.

Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me…

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Opinions. Everyone has One.

You know what they say about opinions right?

For the most part, I’m a huge believer in free speech and will defend anyone’s right to have their own opinions.

But you know what’s not alright?  Cramming YOUR opinion down other people’s throat.  Especially when you have no actual facts whatsoever to back up the ill-formed opinion you’re busy cramming down your target’s throat and regaling your loyal entourage with.

Lemme ‘splain,

From one standpoint, I am relieved to finally have a diagnosis.  But here’s the thing, I naively (apparently) thought that once I received it and let folks know, it would finally shut them up.  After all, how do you argue with scan results that show your brain closely resembles a slab of Swiss cheese?

And with not just one, but two neurologists who specialize in diagnosing and treating Multiple Sclerosis?

Well, apparently you can!

As it turns, I AM a lazy, whining, anti-social cow.  Or at least that’s what I’ve been told, repeatedly, by both portions of my family and that of my husband’s, acquaintances and even strangers.

Yes, leaving the workforce at the ripe old age of 32, was a well thought out career move.  Who needs a pension plan?  Eating cat food sounds in my golden years sounds like a great idea. Yummy!

I’ve had ever so much fun having my once busy work and personal life slowly shrink to almost nothing.  I love being in constant pain. I eat a bucket full of pills every day because I want to.  It’s a choice, really it is.

It’s been an absolute blast to watch my once spotless house transform into something you might see on an episode of Hoarders. I simply adore having to walk very slowly like a little old lady (at 44), eyes to ground, carefully scanning for stray pebbles or cracks in the concrete that might trip me up, resulting in yet another face plant or a cracked tail bone.  After all, who needs speed?  Don’t we all moan and whine about needing to slow down and smell the roses, so to speak?

Descending stairs without firm railings to hang onto?  No problem, sliding down them on my ass or back makes me feel like an Olympic athlete! Wheee…

And my absolute favourite thing of all?Having total strangers walk right up to me share their opinions with me!  And doing it loudly enough that the CSIS, the NSA or Paranoid Putin need not waste their resources trying to get intelligence on my latest nefarious plans.

Like I said, everyone has an opinion.

But if you’ve got any (more) opinions about me, my MS, or anything at all to do with my personal life – which includes my husband, our two daughters, and our pets – and it isn’t complimentary, then do me and the world, one small favour…KEEP THEM TO YOURSELF!

Go find yourself a life and stay out of everyone else’s business.

New Body Please

Excuse me sir, could you direct me to correct aisle for new bodies?

What’s that, you’re running low at the moment? Oh, just on the younger, hot looking models. That’s quite alright. I’d be more than happy for a female model that appears in her mid-forties, wrinkles, grey hairs, a few extra pounds and all. I just want one that works like any other relatively healthy mid-40s woman should.

No, I don’t particularly care about race. Sure, switching from a relatively colourless one like my current, broke down model, will take a bit of adjustment, but I’ll adapt. After all, my husband’s been telling me for over 20 years now that he loves me no matter what I look like!

Aisle three, you say? Splendid!

Pardon me? You also have a free Delivery Service and for just a small fee they’ll even assemble it for me? Wonderful!

Lead on, my good man, lead on.