Archive for the ‘Patient Advocacy’ Category


Well, I can try. Second night at Dad’s now. My sister and uncle just blasted into the room as she flew in from across the country. Things are now getting more and more stressful as I’m coming face to face with extended family members I kicked them out of my life (including my father in the next room.) I did so because they would give you Ebola through a simple phone call.

When I saw my sister, I started crying because I haven’t seen her a bajillion years. She was pretty cold, ambivalent maybe? Both? She did complement my shoes.

Still running on fumes. Actually had a full meal today. For dinner a Bison Burger! Welcome to Canada! You wouldn’t see that on every restaurant menu though.

Tomorrow I have to go the Funeral Home with my sister and pay for the Cremation. A financial glitch, but I would have done it anyway! She was my mother!

I’ll get reimbursed.  It will be covered by a Government Pension Mom was receiving. Of course, I know to get a Death Certificate. When dealing with Estate Laws you ALWAYS get multiple copies of Death Certificates for everything that you have to handle.

I meant to write more about my feelings and emotions. There is just so much going on. A concoction of business, chaos, miscommunication and exhaustion. It doesn’t leave much time for even the slightest pause or glimpse into one’s inner thoughts, and time to reflect upon them. Right now, I’m either the walking dead (bad pun) or functioning on a UFO’s Autopilot System.

 


That expression formally ends​with six. Someone I worked with used to say it all the time. With six. 

He’d do it out of frustration, when he’d made a mistake, when somebody was going through a hard time to help or cheer them up, and always while joking.

I never understood what the expression meant. I’d never heard it before up until that point in my life. I’d always gone along with everyone else at work. I laughed and smiled. Inside? I felt like a total goofball.

At one point, he and I were alone. I felt totally awkward and ashamed (why?) We both loved each other. A lot.

NOTE: some Asperger’s behaviour with all of this? Can you see that? Plus, a lot of my colleagues were mean. Must hide.

So, I finally asked him.

“S., what on earth does that expression mean? You’re always saying it, everybody else seems to know. What the ‘fuck’…hahaha…is it some kind Orgy Rule?” We were both in stitches when I said that.

After we both gathered composure, he told me to think about it. THINK ABOUT IT???You, little… I have thought about it! That’s why I’m asking! Doofus.

We were both in our 20’s. He was a few years younger. Since we were so close (damn near in love with each other) he enjoyed with great pleasure to tease and embarrass me while working. In front of the public! Anything to make blush. Which can happen before a hat enters a room to drop anyway.

I told him to fuck off and just answer the damn question. Otherwise, I would beat it out of him. Which would be impossible without many weapons. I’m tiny. Even though he was thin, he stood about 6’1″ To hug me, he’d almost have to pick me up. Especially if I wasn’t wearing shoes.

Anyway, for those who do not know, the expression means that you tell everyone in your life to yes, fuck off, screw themselves, go to hell etc. Except for only six people. 

Why? You need six Pallbearers to carry your Casket when you die.

I was almost on my knees, laughing so hard. I could barely breathe. It was a good thing he was right beside me so he could pick me up. I really was that close to falling. He just smirked, satisfied he’d almost made me look, once more, like a fool in front of the public.

My number two? Well, I’m wearing almost “Death Bling.” Two of the most beautiful pieces of jewelry I’ve ever seen.

A very close friend I met so long ago “gave” me his Cross. He was also a very close lapsed Catholic. I dare you to find me a bigger one. However, his Mother was extremely Devout.

She gave him his Cross when he went fully through all the Stations. Confirmed as a young boy. If she ever saw him without it, the Bible and more would hit the fan!

One night we were drinking and fooling around, being our idiot selves and I took it. I put it on, making jokes about how Catholic he was, I was the better one by not being Catholic at all!

I went home, and realized I still had it! HIS MOM!!! I called and left a voicemail. Nothing. This went on for YEARS.

Constant contact back and forth.

“Yeah, later.” ‘Okay, I’ll call you tomorrow.” “Let me send you an email in a couple of days.” “Don’t worry, I know it’s in a safe place.”

He died and I found out after the fact. What about his Cross?! It was “missing.” His Mother. Did G. tell them anything? I never got a phone call. Granted, my number is unlisted. But he knew where I lived.

Some people later told me after all those years, the constant excuses, never coming to get it, questions before dying? It meant something. What? I was totally clueless. 

They said it was because he wanted me to have it. I still didn’t understand and couldn’t grasp that concept. In fact, it still seems a bit odd to this day.

After a few years though, I think I might have figured out why. 

I knew he had ADHD roughly 10 years before I knew I had ADD! He confided in me, something he’d never told anyone else. His Mother had Mental Health Issues. And all around, I was the only person who really understood him. No words were ever said about it. I don’t think he could have put any letters together to start a sentence for it!

The cross is gold. 14K. Maybe an inch high so proportionate. It has the entire Lord’s Prayer in Relief on it!

ASIDE: Relief is a Coin Collecting Term. It means any part of a coin that is raised. The higher you can feel it, and the cleaner it is on the coin (and the cleaner the coin itself) the better Relief. Then, it is extended to all metallurgical engraving.

The second piece of jewelry is from my Nana. My Mom’s Mother. I loved it so much, even as a child. I actually became so bold when a teenager, I asked if I could have it when she died! She just laughed and said of course I could.

It is beautiful and obviously sentimental. A locket shaped as a shield. 18K. I can’t even begin to describe its complicated and intensely gorgeous engraving. 

Inside, there are two little pictures. One of her husband, my Grampa, a dashing, young man. The other, a baby picture of my Mom.

Neither of these are coming off until? Definitely not until we take care of Mom’s Estate! And probably longer. Definitely longer.


For the first time in my life, I’ve received more Tweet Notification Activity in numbers, than Comments on my Blog.

“Normally” that would be fine. 

However, I have over 100 or so people saying something about me saying something that I really didn’t think was something special at all.

It’s so, totally and obnoxiously fun, when you can take an amazing run-on sentence and hold it captive.  Make you do whatever you want it to, manipulate it as a Writer, even before the Random Note has been sent out? As long as you avoid Purple Prose.

Which that was.  I’m stunned A lot of Spam-A-Rama? I looked at my Inbox, briefly.  I’ve never been messed on Twitter before l figured who was trying to mess with me first.

*sighs*

Tired.

Just something to put up here because it’s such a massive contrast.  Which form of Social Media is beating up the other, you know?

They’re all going to see this on Twitter.  That’s even more of the crazy.

PA the AI should definitely become unplugged now.


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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