Archive for the ‘Patient Advocacy’ Category


I’m exhausted.  Both my head and my body need a serious break. 

Two new drugs.  Side effects.  One of the two pulled for several reasons.  The last drug to treat the problems.  The problems are still there.  The drug is new so who knows what will happen.  You’ve just started the drug, so you need more time to see if it works, and the side effects go away.

I DEFINITELY needed a break the day my uterine biopsies were done. My OB/GYN did them last week. 

Although, before I continue, this Post might be a bit much for the squeamish.  So consider yourself WARNED.

It was the second most painful procedure I’ve gone through in my entire life.  The first being the insertion of a urinary catheter while just lying on an examining table.  The Doctor put it in faster than completing the sentence:

“Okay, this is going to hurt a bit.”

I screamed at such massive decibels.  I still wonder to this day if I didn’t scare the hell out of all the other women in the waiting room.  Or perhaps, only dogs could hear me. 

I don’t remember if any women were in the waiting room.  I was like 18 tornados trying to find the exit doors when everything was done.  This was for ongoing UTI’s.

I have no clue what my OB/GYN was doing for her biopsies.  However, I can say she’s thorough? Holy shit.  Or holy blood?

I have a new Fibroid, the lining of my uterus is fuller, thicker etc.  Basically, a lot more blood and tissue for an egg to implant, but not good as my Fibroids are taking up space there too.

The biopsies, though? They’ll be benign.  THEY.

I could “feel” her almost slicing me up all over the place!!! Not like a simple “Punch Biopsy.”  Those are like a small poke.  You feel like you’ve just been vaccinated with a large needle.

After we were done, she told me quickly, “Move up the table.  Move up the table.  I don’t want to get any blood floor.” 

Like I said, she must be…thorough?

She told me to relax, take my time, I did a great job (she said that as we were doing it, I could take a break.)  It took me so long to actually move, then clean up, then try to get dressed…they actually sent a nurse to check on me.

BWAH-HAH-HAH!!!!!!!!

Ah, I love Medicine! I wonder what my hysterectomy will be like?

My OB/GYN is lovely though.  Only two things to note for the anaesthetist:

1. Not to be picky, but if you’re thinking about Propofol? It makes me sick.  Midazolam, please? 
Granted, those were only for less invasive things I’ve had done.  Still, no Propofol in your Alchemy.

2. DO NOT forget I’m on Propranolol.  I’d like to wake up after surgery.


Just mentioned on Twitter that I’ve got WP back up and running on my mobile. Hopefully more Posts soon?

I’m just starting Propranolol.  Been a month now and the side effects are kicking my ass off.  However, in a good way? Like I’m trippin’ out on significant levels of Opiates.

I’m still feeling pretty gonzo with my second dose.  I’m 40mg bid now. NOTE: Update Meds Page.

Later.  It can wait.  I took my second dose not long ago.

Why Propranolol? Based upon a fairly educated guess, I’m now dealing with chronic migraines.  It can be used for prevention.  Maybe kicked off from when I had every sign of a Stroke, and was chucked into hospital last summer.

Wow! This is a bit of a Post! Writing it when I feel like I’m in between being on Morphine and Heroin.

Not that I’ve done Heroin.  Am I spelling it correctly? Have I slept with a Heroine? Do I need one? Holy crap! Damn straight I do! *laughing*

No, I’ve just talked to people who have used it and what it was like for them; what they experienced.  Did I ever find out what some people can experience!

Utterly fascinating! I realized why so many people could become addicted to it.

I’ll also say it’s utterly fascinating why I’m getting stoned out my mind.  Well, it is to me because I really get off on Pharmacokinetics.

I’ve gone through every med I take and found the answer. Plus extra stuff which is just icing on the cake.

Super-awesome Post to write, but hells bells no, not now!  I can’t even handle this screen anymore.

Laters…


I mentioned on Twitter that it might, might be time for me to hang up my Blogging Hat.  Or, to say stop my Blogging Hands.  That would be more appropriate.

It’s not an ongoing, forever-we-experience, Blogging Crisis.  It’s not Writer’s Block.  I could think of many things to write about.

Things have changed.  Some that are easy(ier) to explain, some I don’t know if I can, but I’ll try.  Some I don’t even know if I can explain to me!

My Blog has been up for nine years.  I don’t know how long any measurement that means.  In terms of living, averages of any kind, but that’s pretty irrelevant, I think.

I mentioned the word, “living.”

Are Blogs really living entities? I believe the answer is a very firm, no.  We MAKE them living entities.

I made an analogy on Twitter as well, regarding the “feelings” between both my Blog and me, as a person.  I said, “I feel like I have phantom limb pain.”

It’s true.  Something has been severed.  The “living entity” I have created, that which was so connected to me…  It’s not anymore…  But to what degree, and even what part of my body, I do not know…yet.

Despite still writing a bit more, I have been tremendously unhappy with my Blog.  The beginning of things being severed? There were times I couldn’t even look at it.  Now, things seem so, terribly disjointed and I can’t fix them.

I definitely don’t expect you to understand that last sentence!

Does reading my Blog make me cry? *laughing* Of course not! It’s my life!

Thinking about my life might make me cry, but my entire life isn’t on my Blog.

The only times I’ve cried reading my Blog was years ago.  I would receive these Comments from utter strangers.  They would pour their hearts out to me and tell me I literally saved their lives.

I would sit and bawl my eyes out.  Why me? Who am I? I didn’t say anything? It took a LONG time to respond to people like that! But they were few.  I’m not being egotistical.

I write a lot about having no life.  Well, I do.  We all do.  Perhaps not as we’d always like it, but you can’t escape the fact.

How many hours have I Blogged, read other Blogs, spent time on Twitter when that came along later.  How about all day and all night?

At the time it felt just fine.  Really? Not so really. 

That’s not healthy.  I mean, for me it isn’t.  It’s an unhealthy escape.  Too easy to muck about when I need to focus on getting myself at least somewhat together.  Also, that “somewhat” is just a start.

How long has it been since I really got into my own writing? I mean really got into it? I have SO many unfinished projects, I haven’t sent any Submissions to anyone in ages. *sighs*

Am I done? I sure feel done.  This Post has been exhausting to write.  Difficult, too.  Don’t cry, PA!

*teardrops*

But for now, I’m still here.  I haven’t made a final decision. 

Maybe Dr. PA can perform some surgery on both sides; to mend herself and reattach what she brought to life and into this world.


An afterthought to my last Post “Forever Bullied.”

MOTHERSHIT PSYCHOPATH talks a lot of trash.  It’s like backward primordial ooze but coming out of a Heroin Junkie’s Wormhole.  Or some hole.

I could get her to pour her ooze out through her fists.  C’mon small talker.  I dare ya.

Here, when someone reports any type of assault, no matter how big or small, legal action does not hold between the parties involved.  As soon as you make a telephone call, it’s immediately out your hands. 

After that call, you might have completely wished you had never made that call.  At all!

That’s because any assault reports are directly handled by the Police.  You have no say, except for what happened.  Then, they do a full investigation and prosecution for any and all charges are their decision.

What an evil thought.  I know she’d be screwed though.

Oh, what an evil thought…


They’re still working on getting me an appointment at the Stroke Management Clinic.  Which is fine.  Referrals can vary for time periods. 

Sometimes you have to appear sick by the Doctors, sometimes healthy by them, maybe be their best friend, or kiss lots of nurses in the “Paperwork Closet.”

Or just get lucky.  Apart from any Paperwork Closet Activity.

When I called yesterday, it turned out the paperwork hadn’t been sent.  This, from the (third now) hotel, the Ambulances have always chauffeured me to, and upon arrival, with great aplomb.  The Orderlies should be playing, “Pomp and Circumstance” EVERY time.

So the Stroking, I mean Striking Woman gave me the exact number to call at the other hotel, to have my Paperwork (Closeted or Otherwise) sent over to their hotel. 

Closeted or not Closeted?! Have we not moved past the Stone Age and given all of these people their Rights and Freedoms! Ho! Oh, Ho! Ho!

Is this sounding like a bad Monty Python Sketch yet? I’m doing my best.

The Paperwork was sent but it was basically end of day.  So, call back today.  I thought the Striking Woman would just give me an appointment as typically, all Medical Administration Assistants do.  But I received a nasty surprise.

“Okay, PA…I’ll put you through to Triage now…”  Click.

Okay.  Yes, when you are chauffeured to hotels you go through ER Triage.  Who is about to die? Who has cut their finger? Although, children are Triaged quite quickly and with great care.

Look up the word: IATROPHOBIA.

Never did I expect to be transferred to a person over the phone, to discuss my problems in any “Triage Manner.”  If ANYTHING, I thought they would Triage appointments based upon Doctor Reporting from the patient, the full examination, all workups, tests.

And boy did I have a FULL Neurological Exam! Things were done to me a million miles beyond so many basic ones I can do in my sleep!

At one point, he was testing my leg joints, mobility in different ways, and other reflexology–not just the “sit and tap the knee.”  Wait.  He did do that apart from all the others.  I just wasn’t sitting.

My legs were up in the air.  And there was no need for a woman in the room! I had my pants on.  But at one point, it was like a combination of two gentle forms of Shiatsu and Swedish.

ASIDE: I am addicted to Shiatsu.

The strangest Neurological question he asked, was the most bizarre I’ve ever heard.  Probably will remain so.

“If you comb or brush your hair, does it ever hurt? On one side of your head? Both? Nothing?”

Holy All the Elephants in Africa Pause! “Erm…maybe my right.  Yes, when it’s tangled? Yeah, my right.”

WHOA! HOLY MEMORY! I screamed like hell having my hair brushed and combed as a kid! What on earth does that mean?

Anyway, what does the title of this mean? I started to drift off into TIA Land on the phone with the Triage Guy.

God, we were almost coming to blows.  I have to warn EVERYONE new I talk to that I don’t mean to sound like a “Professional Patient.”  I’ve studied Medicine.  I was going to pursue a Career in Medicine.  It’s just that sometimes life doesn’t always go as planned.

I also said I was unprepared! I had to make a list of so many things! So much happens (in the back of my mind to argue against your pseudo-points!)

So, fine.  Conversation ending, then WHAM! I said right now, happening, told him what was going on.  Speech starting to slur, rambling, needed dark glasses immediately!

He said he’d let me go and rest.

But what timing. *sighs*

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Someone might be checking me out now.  Looking at my blog to find out more about me.  I’m not sure.

But that’s okay.  In fact, it’s great! I want you to know me!

However, if you are looking at my Blog and checking me out, know that I am SO much more than these words.

If you are reading, I hope you see this.  If you took a look and don’t come back? I’ll be so mad of not thinking of this sooner!

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I was talking about Bedbug Treatment earlier.  They run like crazy through our vents so if one person can get them, in can be a bloody Five Alarm Pesticide Fire for the rest of us.

Due to this “New and Improved” (I love that oxyMORON) the MORONS around here are making us wash our entire living spaces.  And I don’t mean that annoying Febreeze™ commercial.  I mean it for real.

It’s even more fun because I live in a Bachelor.  Not at least a one bedroom.

Anything you can imagine putting in a washer and dryer to clean, we (I) have to do it.  Alright, a wee dose of sarcasm, BUT NOT THAT WEE!

Afterward, secure tightly in a garbage bag for Pest Control Treatment.  Which I find yet another thing oxyMORONIC.

I doesn’t hurt my other valuables that I would NEVER put in a washer and dryer.  Like my BOSE WAVE III.  So, if they’re worried about Bedbugs in every single stitch of our clothes, linens, every piece of fabric that touches us, why do we have to launder it over and over?

So here’s what I want to know. 

It doesn’t affect stuff on bedside tables, art on walls, books, CDs and DVDs, Televisions, dishes that might be out because you didn’t get a chance to wash them all yet, food in cupboards, misc. things on shelves, blinds, curtains, any kitchen appliances…

Well, why the hell don’t you just leave all the fabric stuff out in the open and have it all sprayed too!

Harrumph.

Oh, and on Tuesday they’re treating my place for ants and mice.  However, we have “special ants.” They’re called Pharaoh Ants.  Very easy to deal with.

They like water, so just keep any damp areas wiped dry.  Then they go away. 

Although, they can be Techie Ants too.  I’ve found them skirting around my Laptop screen when using it.  Maybe they were just curious as to what I was writing.  Either way, no harm, no foul.  They didn’t cause any damage.

Back to the Bedbugs.  I believe my Second Treatment will be on Thursday.  I couldn’t even manage to do all Preparations for the first.

You see, under my “regular” health conditions, I need to take a guy I know to go grocery shopping with me.  I can’t lift the heavy bags!

I also have him help me with laundry because it gets pretty bad going up and down, up and down… 

A bag of clothes slung over my shoulder with one hand.  The other, holding my cane and a jug of Detergent.

I’m not complaining here.  Know that.  Just the facts of the case.  What I will complain about is that our Laundry Room has five Washers and 10 Dryers.

Now, we have the above and a head injury so unbelievable…well, it is quite unbelievable so try to imagine it when washing my apartment with it!

I get migraines that appear like I’m having strokes.  Neat, huh?

A stroke.  Picture that.  Even on it’s own. 

Granted, sometimes they are not as bad, and SO symptomatic; waving a huge flag with every sign listed.  That was when it started and I first went to hospital.  In my Chart, they Rubber Stamped: STROKE PATIENT!

However, after Discharge I did have another that sent me back to hospital.  Thus, this “thing” is highly unpredictable.  And painful.  And weakening.  And EXTREMELY DANGEROUS.

I lose a significant (more than?) degree of both gross and fine motor skills.  PA fall down go BOOM.  In fact, I almost did doing the damn laundry the FIRST time for this!

Wait.  I did fall a bit.  I remember because I immediately wrapped and curled my arms and hands around my head.  To protect it if I went all the way down.  Like my head isn’t (severely!) enough?

I’m also visually impaired so wraparound sunglasses mandatory.  Really sick makes being bedridden mandatory.  So can my awful TBI Sleep.

TBI is an acronym for Traumatic Brain Injury.  The term is generally used for a head injury that’s more than a bump on the bean that you’ll get.  One that won’t significantly affect you, and will heal quickly.  Like a mild Concussion.

However, a more serious Concussion that takes too long to heal, acquires problems, and possible chances something might not heal? Post-Concussion Syndrome? That would then be shifted to a TBI.

All head injuries can make you SO tired and want to sleep.  That can be part of the healing process.  But when stuck with massive, permanent, can be treated or not, your degrees of sleep can be astonishing.

I’m minimum 12hrs a day, but sometimes more.  On some days I would kill for more.  Caffeine or not.  Like today.

The information and guidelines to prepare for this Bedbug Treatment? It’s more like something actually written by the Gestapo.  It makes me wonder if anyone without any challenges could do it all?

Moreover, it’s given to you four days in advance.  Moreover, moreover, I live in a Co-Op.  The By-Laws state, if you need help for any health conditions, you are to obtain a Doctor’s Letter stating why you need help–and what your issues are.

FOUR DAYS??? I got mine for the First Treatment on a Friday.  Thanks for that.  So I was at least ready for the Second.  This was charming.

Despite my letter being Crystal Clear, I was told I had to explain exactly what I needed help with.  In Detail.  Then, the Co-Op would see what they could do.  They could only do so much.

I began citing the portion of the By-Laws regarding all of this, only to be interrupted, that I had to read them, “properly.”

I have a wonderful relationship with our Manager.  We talk, we joke, he knows I know the By-Laws back to front.  I do things to make this place run a lot easier for him.

Why is he not doing the same?

My emails to him now. *laughing*  I’m trying to “maintain” a Business Tone.  Have I reached the Antagonistic Tone yet? I don’t mean to sound that way.  But it’s called: Documentation.

I found a little cart I have that I thought was broken.  One of those metal, grid-like ones you can use for shopping.  It turns out it’s not broken at all.

I could use it for laundry.  Still, there is absolutely NO WAY I can do what is required (again, like I have a stroke, and only having a few days.)

I think I could do my laundry with my little cart.  It actually supports me evenly, so no cane! Completely irrelevant though.

I’m going to have more tea.  Try and wake up.  Then do a couple of loads? It’s so late now nobody will be in there.

God help me.  Well, he can’t.  Agnostic Theorists won’t make it happen.

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In zoned voice to Receptionist with rising tears toward end:

“Hi, it’s me.  I know we talked about delaying things because of my living situation.  Yes, not knowing about the second Bedbug Treatment.  And not hearing back from the maintenance guy about ANOTHER flood from the woman upstairs.

Well, I finally heard back from him, and would have called you earlier but the office was closed.  We need to reschedule the appointment.  In fact, I don’t even know when I can do the bloods.  You see…even if for the time…
when.

..
.
…well, uh, wait, they’re doing more pest control.  Ants and mice.  And I was told my second Bedbug one was two days after?

Things have been damaged I’ve found.  I’m making a list for my Insurance Company because I did everything right.  And the medical letter? It said everything right! But now I have to tell them everything!

Snniff,snifff, I’m sorry.  So it’s not just my living situation and all I have to do there and I don’t know how, but the bloods, and I don’t care.

First week of the month.  That’s when I get my period and the catamenial migraines that mimic strokes and it was so bad this time and real migraines gr…uhhh…ummm Sssoorrryyy…

So no way I could do them on time, in bed for days and I don’t care.  Ahhh…ohhh..snifff…shighff.  I don’t care about my dying liver, having all three Hepatitis A, B and C or dying.  I don’t care.

I can’t do anything about anything.  What’s the point? Who cares and all I have to do is going to take forever anyway so everything is just going to have to wait.  I can’t do anything about anything.

The only thing I can do is get my hair cut.  That’s all I can do.  Get my hair cut.  And dye it too.  That’s all I want to do.  Maybe if I can do that.

So I guess I’ll have to call you back when all of this has to be done.  Thanks, hon.”

The tears will be full throttle if you couldn’t tell.  The call would not be aggressive in any manner whatsoever.

The “hon” is because I have a very special rapport with my portion of the Staff (Sweetie GP’s Staff.)

They would probably (definitely!) ask me if I wanted a call from Sweetie GP. 

With the call I would continue to be so upset, I’d be confused and anything could pop out of my mouth. 

Although note it would not be Passive-aggressive if it sounded like it, because of our relationship.  It would be purely because I was falling apart all over.

This will basically be the call I will have to make to the office tomorrow or Monday.  And sadly, that’s how it will go.

Unless I just shutdown completely and state we must postpone.  However, if I’m asked any questions? Then I might start falling apart.

I think I’ll go for the second option.  Shutdown.  The Receptionists are always busy.

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Your Liver is both a Recycling Bin and a Garbage Dump.  When you put everything into you, it all swirls around, various organs wake up or go to sleep, but your Liver basically has insomnia.

It works non-stop.  If there’s anything left that’s good from what you stuffed in you, cool! We’ll clean that up and chuck it back into you, fresh blood added, no charge!

Blech.  What was THAT?

This is the Garbage Dump Situation.  Too much Toxic Waste and your Liver.  Well? Who on earth has internal HAZMAT Suits for all of their organs!

It appears, mine might be more of a Garbage Dump right now.  Maybe? Not worthy of HAZMAT though.

I have a whack of bloods to do.  And one “serum.”  A, B, C…serum! There are no types of blood screenings for Hepatitis C.

Yes, Sweetie GP is thorough! Either that, or my Liver is a massive Garbage Dump and I’m really sick.

Hep?

It all started with an elevated enzyme but which one? I don’t know.  One nurse in the office wasn’t available to go over all the results and give me all the levels of anything off.

I know it’s related to alcohol.  Mostly.  20+ years of “Drink Any Man Under the Table Bipolar” has done that to me.  I wish it hadn’t.

And please don’t blame me for blaming it for blaming me.  Bipolar does many awful things.  Things where you have no control when not treated.  So I say, under certain circumstances, “Blame The Beast.”

But not all of them.

I can’t believe all of the other enzymes she’s ordered that she’s never done with me before.  There are basic ones that are always done with just standard Physical Exams.  But…

Still, here I sit.  Still drinking.  Right now, actually.

It’s hard being an addict.

And yet, she could tell me I have three months to live and I’d be fine with that.  Enough time to get my affairs in order, work with her for what I wanted and needed…and have her there.

I’m not afraid of death.  It surrounds me. 

Forever wanting to work in the Funeral Industry, working in an HIV/AIDS Hospice, pursuing a career in Medicine as a Palliative Nurse.

Attempting suicide and ending up in a coma for three days.  I still wonder if I did clinically die before being fully intubated and put on a respirator.  The records are too spotty to tell.  I should have been dead.

Why do I feel so scared now?

Is it because I had complete control over death in all of those situations?

Is it now because I’m staring at a piece of paper I don’t understand?

Is it a piece of paper that could lead to a place where I have no control?

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No doubt my readers from The Country of Scotland, The Gaelic, and Former People Lounging on Hadrian’s Wall, will know this expression.  This is due to its historical origin of these people’s Geographical Location.

Granted, that is purely anecdotal evidence from an old, Scottish Gentleman I know.  I have yet to find any Peer Reviewed Studies.

Also, there is a high probability it is known by the People of Great Britain, England, Wales and the Republic of Ireland.

And maybe some others.  Like me.  I live in Canada.  And I love what this means.

“PISS OFF! GO FUCK YOURSELF! GODDAM, BLOODY TOSSER! USELESS EXCUSE FOR A MAN! EVEN DATING MY DISGUSTING AND FILTHY BROTHER WOULD GET ME OFF FASTER THAN YOU!”

Well, now? *raises eyebrows*  That young lady sounded a little bit upset, didn’t she?

Using the expression might not make someone go totally mental, but what it means is this.  Although I did use it from a woman’s point of view.

Euphemism (or even literally?) to get on your bike and fall off your seat.  Then hit the VERY HARD metal crossbar, and crush your balls SO MUCH TO HELL.

To the point they are barely recognizable.

Any and everyone? Please chime in if I’ve got it wrong here.

I bring all these shenanigans up because I might be able to stop saying, “Get On Yer Bike!” to myself.  There’s no way I can go cycling now, and might not EVER be able to for the rest of my life.

But I accepted that.  Like so many other things that I probably won’t be able to do for the rest of my life.  It made me sad, mad, threw me into serious states of Depression, but I made it out.

There’s a chance I can no longer say that phrase anymore.  Maybe.  Recumbent Bikes.

A neighbour on my floor rides every day like nuts.  He seems almost like a Pro! He knows my health problems and immediately said I could do it with all of the types, what would be best for me.

So however you want to do it, “Get On Yer Bike!

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