Diplomacy challenged.

2A2D9307-20D2-4347-9602-E9D3A0B6C748

I belong to the MyCOPDteam website, which is a support group for people battling COPD and trying to find resources in fighting this crazy disease.

I say COPD is crazy because even the so called “experts” on the disease – the docs, respiratory specialists and patients themselves – can’t all agree on it’s causes, triggers, definitions, etc., etc., etc.; making for a rollercoaster ride of things to consider and try in order to remain healthy on a case-by-case basis.

Into these care and treatment considerations come the various personalities of the patients and their caregivers and loved ones, willy nilly, with very little opportunity to filter in or out anyone who may be unhealthy for your individual state of mind.

There are key issues to be addressed with any chronic health issue, but the most important questions don’t get addressed until much further in the online support community, long after you have emotionally engaged with an internet friend or foe and their health outcomes.

Being a crabby New Englander, I was taught that a friend, no matter how boon a companion in real life, is still an “acquaintenance” until you’ve known them and been friendly for at least five (5) to ten (10) years.  What then are the rules for boundary management in internet life?

The reasons for the 5-10 year minimum getting-to-know-you period or reasonable limit is because people lie.  Or prevaricate.  Or put on one personality in public, but may actually be a whole other soul-sucking personality over time.  Until you’ve been in the trenches with someone, you don’t kniw who they are, but rather have bought a bill of goods they are selling you about their personality.

Into this picture comes the art of real life vs. internet life, and how well one manages the graces and decorum in the troll-filled universe we sometimes inhabit in the internet determines in a big way whether or not one is a fan of spontaneous interaction.  With strangers.  And their relatives.

I’ve done pretty well in the 1:1 world of Better Breather Classes.  I am who I am, and I participate fully.  Take me or leave me, but you won’t say you didn’t “notice me”.  And, we all have an unstated but clearly understood rule about manners and communication and kindness.  When in doubt – don’t say it, don’t do it – keep things running smoothly and ensure everything is non-confrontational and polite.  Everyone handles their chronic illnesses differently, and it’s not my business to police your interactions with others.  There is no “right” way to handle how you deal with your illness aggravations and vulnerability as you age.

I’ve also done pretty well in the world of internet dating, breaking through the safety wall to meet and date (or drop) the object of my potential lust and affections.  Because of the boundaries I created to protect my real world identity, few people got to be facebook-level friends  as my answer was always, “No.  You have my contact info on this (other) site.  Until we meet in the real world and decide that we know what we want from each other in terms of public behavior and manners, we’re fine staying friends on this (other) site and not on facebook.  There is no “right” way to handle how you deal with your love life and carnal desires, but I draw the line at starring in an episode of “Cheaters”, or of having your relationship drama rain all over the people in your life – online or in the real world.

So, with these experiences in mind, as I’m dealing with the bleed-thru of the MyCOPDteam friendly acquaintenances and their connections into facebook, I’m finding more things are getting on my nerves.

First, I’m not religious, so the whole “Prayer Warriors, I need your help” demand as a constant background battle cry is exhausting.

Second, we don’t all deal with the inevitable complications and end of life decisions the same way, so my diplomacy is being stretched thin as I go on facebook at all hours of the day and night, unprepared to deal with what can be endless drama in my otherwise lighthearted facebook experience by people who are chronically ill and showing their chronic illness panties – intentionally or otherwise – for all the world to see and remark upon.

Unless it’s siloed among my own family and extended family members – a place where it’s much easier to identify the landmines and avoid them through years of real-world exposure – I don’t wanna know.

 

Squirrel !

Squirrel

I have the attention span of a flea.

Could be my historic ADHD, or it could be that I am no longer tied to a fixed time table, allowing my messy tendencies to take over my life.  Whatever it is, I’m currently:

– Cooking a pulled pork meal in the slow cooker

– Cleaning the cat’s room

– Writing this blog

– Taking a nap (seriously)

– Trying to publicize our upcoming shows

– Trying to update our website

– Calling a friend to see if she wants to go for a walk by the shoreline on Sunday

I can never do just one thing.  Never.

Meanwhile, I was supposed to get out of bed, tag some jewelry, and deliver it to our store in Salinas.  Yep.  Squirrel !  That so didn’t happen today.

Now, it’s many hours later.

– The pulled pork is done and made eight (8) different meals (I love the freezer – so much less waste).

– I just finished changing the cat’s water and replenishing the kibble (she got pork drippings earlier for dinner – I know, I’m a bad cat parent feeding her people food)

– I’ve had at least two (2) naps, as my ankles are horribly swollen since it was in the 80’s today

– The website didn’t get updated

– The original blog post that caused this stream of thought, a brilliant blog about dealing with Anxiety, never got pimped (until now, even though I’ve completely lost my train of thought about why it was so good).

– And, I’m about to sit down and make some more jewelry as I’ll be heading to Salinas tomorrow, if all goes well.  One can never tell what my reality will be vs. what I plan for it to be the night before.  Squirrel !

 

Adventures

vs. Reality.

243E57DE-D0D3-42DF-A5DD-B9B45D9DE4DF

This is my cousin T in Harvest Caye, Belize.  She’s one of the strongest, most determined women I know.

When I arranged for T to participate in the cruise with other cousins, a spouse and friends, I knew she was a tough cookie, dealing with a bum leg that she’d refused to amputate, despite the fact that the broken ankle had led to bone failure as it deteriorated, and the fact that T is in incredible pain each day.

When I found her in baggage claim in New Orleans, she was very much as you see her now, with a bad leg due to a hip replacement on her left, and a failing leg on her right, with the bonus addition of 3 broken toes !

But, like the rest of the stubborn cusses in our family, T is nothing if not resilient.

054F2A8D-511C-421C-99C8-A112AA5F7E2E

So, I thought I’d arranged a handicapped-suitable reef tour boat, with a swim-up dive platform and easy access on and off the boat when swimming from the shore off which we’d be moored.

You know, something like this:

 

No such luck !

Instead, I’d chosen a tour that changes its itinerary based on the whims of the winds and current, and we ended up going out to the reef on a speed boat with a rickety ladder for climbing on and off the boat.

DA6B291E-DDF1-4FB8-9575-299FED7B5436.png

It wasn’t until AFTER we got on the boat that we’d found the itinerary had changed, and that we’d be climbing on and off the side of the boat from the moveable (and rickety) ladder, and that we’d be traveling about 30-45 minutes at high rates of speed to get to the snorkeling sites chosen for that day.

Roh-oh…

So, I took off my baseball cap and used it to cover my nose and mouth, ensuring that the speed of the boat didn’t cause the breeze generated to steal my wind.

I also tucked my body as far forward as possible, under the covered part of the boat, to stay out of the breeze.  No way did I want my choice to snorkel causing breathing problems or even a risk of a cold or pneumonia.

The bouncing of the boat was hard on my body, but our captain was good and kept the bouncing to a minimum.

Once we arrived at our drop off point for the guided reef swim (NOT what I’d agreed to)  to begin, T and I stayed behind on the boat while the Roomie swam off with the tour.

62F7855F-009B-4561-94A4-E3FAD9184E71

The captain and his crew could not have been nicer or more considerate to the two of us remaining on the boat.

He rigged up a life preserver and a rope for both me and T to hang on to the boat while snorkeling, and I’m glad he did as I did not have the strength to fight the waves and stay near the boat without assistance.  Just too much energy was needed, and the waves were too strong.

AF21956B-78D0-40E1-99CB-EB26D0053373

When it came time to get back on the boat, the three (3) crew members assisted us both on and off the boat so that we didn’t hurt any of our existing handicaps worse than they already were.

We swam at two stops, where the boat went ahead of the stronger reef swimmers to be able to meet at specific points for anyone ready to climb back onto the boat, and then we went off to a third location where the boat stopped to allow everyone to swim with the manta rays and nurse sharks.  (Being tired out and a big chicken, I stayed on the boat during that stop), although my for er Roomie loved it.

 

At the end of the day, I love snorkeling, BUT…  I’m still afraid of deep water and big fish (thank you Steven Spielberg and JAWS), but it was a great day where we all got sunburned, at least a bit.

Heading back to our cruise ship, I retired to a cabana in the Vibe beach club area, to hide from the sun while warming up and taking a nap.

It doesn’t matter how much or how little energy I have to do any of the planned excursions – any day at sea is the best kind of day for me.

972439F2-3F17-497D-B60D-DCEF3AA7FD2E

 

Mimi

A874CA8B-6FF7-4BD1-8C64-0062C6313FA8

As I wrote last week in, Burning Bridges, I have zero patience for being needlessly frustrated.  After being told I couldn’t have my preferred and necessary prescription to breathe, and after being told that my pulmonologist, an expert on my breathing situation, was no longer allowed to treat me, I booted the HMO to the curb.

Then, I ran into car trouble and money trouble, compounding the tight budget issue, but I wasn’t worried about it as I can go without my meds if I’m careful.   I also choose to have an extra month’s supply on hand in the event of an emergency, as I know how often things hit the fan in my vicinity.  So, I’m using my emergency supply this month instead of refilling my medications, saving me at least $400 in out of pocket expenses.

Today, we’re 33,000 feet in the air when my VoIP internet based phone rings, freaking me out, as well as the woman beside me.

We all know we’re supposed to have our phones and devices in “airplane” mode for safety.  Mine was.  The problem, instead, is one of manners versus safety.  Because I was signed on to the airplane wifi, my VoIP phone was working as it should and ringing.  But, I couldn’t stop it ringing by declining the call to send it to voicemail – my only option was to answer it or let it ring.

EF931A60-2B77-4599-87CD-0F59408C3247

There wasn’t a “decline” button anywhere to be seen, so I had to endure panicked and angry looks from the woman next to me who knew darned well that no one should be getting calls, as the phone kept ringing and ringing…  Guilty.

I knew we were safe and I wasn’t doing anything to endanger lives or interfere with the safe operation of our aircraft, but how do I explain that to the folks around me?

Luckily, the call eventually went to voicemail, where an Ernestine-like woman from my now terminated health plan was calling me to ask if I was ok?  If I needed help in ordering my medications?  If I needed financial assistance in affording my medications?

It was all I could do to leave her a polite vmail later in the day, after arriving in Tampa, to explain that I was no longer a member due to their program denying my prescriptions, ignoring my written complaints, and that I found it ludicrous that she’d try and help me find a way to afford my medications when they denied me the long-established drug benefits in the first place.  Heck, I’d still be a member if they hadn’t tried to rework and deny all my long standing medical care choices and requirements.

Mimi and her team of pharmacy compliance specialists may be good at their jobs, but if they hadn’t debated my doctor’s prescriptions in the first place, Mimi and company wouldn’t need their roles in the second place.

Hoping that I won’t get anymore unwanted calls while traveling, I still swear by the VoIP phone service via the ipad as the best way to save money on telephone and messaging costs.

Bette

C6CC7BDB-48E1-4871-8979-8065C9F2ED3C

I’ve been going to game night the last few Friday nights, and with every blessing, I truly feel one also receives a few slaps.

Mine is a very trying woman I’ve written about before, who has decided she likes me, but who drives me up the wall due to her narcissistic tendencies.

Let’s call her “Bette” in recognition of my particular favorite crazy, Bette Davis, in “Who’s Afraid of Baby Jane?”

9EAA0B61-D5EA-44FE-AD43-71B5F4D973E2

Bette is the 82 year old mother of 9 who has the will to be friendly, but has an overtly narcissistic personality which makes any attempt at friendship reciprocation challenging if not exhausting.

I get it.  Making friends is hard.  She’s trying.  We’re all trying.  But Bette is an emotional succubus that leaves you feeling exhausted and running for the hills.  Then, she gets her feelings hurt because she’s truly clueless about how to interact with people.

(Been there.  Done that.  I think I feel her pain).

Anyway, we have a Saint in our park who looks just like Katheryn Grayson, the 1950’s songstress in some of my favorite musicals.  Kathryn is Bette’s chief enabler.

7F8DFE11-0192-42FE-A138-4BACB7BAF2E7

I say “enabler” because Bette wasn’t leaving her house without help and prodding, and Kathryn has now decided that she’s bringing Bette to Game Night on Fridays.

Now, I have nothing against anyone coming to game night, if they are going to GAME !

My manifesto:  I’m not here to be your personal servant (more about that later), I’m not here to look at 102 pictures of your life when we’re supposed to be playing, and I’m not here to wait on you while you wander off in the middle of a game.

In particular (my pet peeve), I don’t want you putting tiles down on the word game board unless you’re ready to play.

None of this putting various tiles in various spots, deciding you need popcorn refilled, wandering off to find your rosewood cane (that you don’t need right that minute!), and leaving the other 3 players in the game waiting for you to finish taking your turn and clueless about where you left off.

No !

One of our newer Park residents wanted to play “upwords”, which is a variation on Scrabble, and which I’d agreed to play the week before.

CA3E456A-0BAE-4F8D-BEB8-8AB9983FF713.png

I’d managed to avoid Bette and her killer perfume by changing tables the prior week, so our Kathryn kept her busy at the Yahtzee table while I slid away from her clouds of scent by moving to the Ski-Bo card table.

This time, I wasn’t so lucky.  I had to hear (again) about the husband who has been dead two (2) years as of Valentines Day.  (I swear, Bette can turn any topic into a reason why you should feel pity for Bette or feel you must rescue her).  I had to hear about yet another bipolar episode which left her stuck in the house for the last 3 months.  I had to hear how her kids never visit.  And, did I know she’s a mother of 9???  Her manipulative, self-centered focus is truly an art form.

I had to listen to Bette yelling for Kathryn Grayson to wait on her (Kathryn, by the way, has her own walker and mobility issues and was sitting 2 tables away), I had to switch seats with Bette as she claimed to have hearing only in her right ear, I had to jump up and get her food (anything to stop the yelling), and then I had to listen to muttered accusations against Kathryn for stealing her husbands “very valuable” 100 year old rosewood cane. The cane which was later found resting on a table top.

Drama, drama, drama !

I know we’re supposed to be kind to each other and help everyone from feeling ignored, but I’m putting my foot down over “upwards” or any slow-moving game at these kinds of evenings when I’m there.

The Bette’s of the world have no mute switch, and can’t tolerate a slow-moving game.  I’m trying to be reasonable, but I have my limits, too.  We’ve got to make sure that Bette sticks to fast moving games, or make sure that she sits at other tables where such games are being played as it’s just too frustrating for the rest of us to be stuck waiting on her.

Yes, my living situation is just like high school or Summer camp.  Games night is about all of us finding fun and friendship, and no one person derailing the intent of the gathering.  I do feel a private speech coming on, aimed squarely at Bette, again, and am glad I could control myself for this round.

Getting old isn’t for sissies !

 

Procrastination

I was going to call this something else, but Brian Lageose’s repost from 2010 distracted me.  Please be sure to check out Bonnywood Manor when you have a moment and need a laugh.

what are they doing now cat

With the inevitable distractibility of the ADHD and hopelessly bored natives of any land, or your average cat, I am *still* working on my 2016 taxes.  Today’s topic – medical mileage reimbursement write offs.

Started looking for the mileage reimbursement rate for 2016 for my business expenses, and then ran into this gem that I’d forgotten.  Since I no longer directly care for Auntie and am no longer scrambling for any claw back that might net me a few more pennies credit on my taxes as dealing with her mental health issues was sucking the life out of me, I forgot completely about the medical mileage reimbursement.

business mileage tax write off 02 2016

I do think it goes without saying, though, that the IRS exists to suck the life out of all of us.  One must embrace their inner OCD penny pincher and paper pusher if they have any hope of clawing back a decent refund.  (And, by decent, I mean a refund that will offset the cost of any next trip that I am planning).

flamingo 76 days

Today’s budget is being updated to note any extra driving for 2019 so that I am tracking the tax write off going forward (vs. trying to claw it back years after the fact during 2016 and 2017 tax filing hassles).

homework

It may be nickel and dimeing myself to death in the hope that I will eventually exceed 7.5% of my total income in order to claw back more discounts on what I need to pay, but I all can say is, “Hey – they started it !”

they started it

So, I’m sitting here working on my taxes, looking forward to the Golden Globe Awards tonight (one must critique who’s wearing what, and which MEN are dressed like little boys in too tight and too short suit coats, as if they are the Hulk, about to burst out of their clothing due to a recent growth spurt).  Yes, I need a life.

Real boys, who may be forgiven almost anything in a suit when trying to present the critical, “neat, clean, presentable” look that our parent’s always advised was best…

kids suits

Vs. grown men with too much money and too little personal fashion savvy for my taste as they try to relive their childhood:

2015-golden-globes-menswear-roundup

Not saying I’m any kind of fashionista who has my crap together, but you can bet that I *would* be dressed appropriately for my gender and the occasion.

Meanwhile, back to doing taxes for me…

irs donation jeff leedy

Adulting. Taxes and Adulting.

lol_designs_feat-1024x580

The rule is, you can delay doing your taxes for up to three (3) years from their original due date, so long as they owe you a refund.

Seriously.

You’ll lose your refund if you don’t make the deadline, so I’m working hard (or, procrastinating and doing anything BUT working hard) trying to get my 2016 paperwork organized.

My files have been emptied.  I’m creating new tabs and sorting pendaflex hanging pockets alphabetically.  I’ve had to take a break and run to get yet more pendaflex hanging folders so that my still-needs-to-be-filed crap all over the office can actually be organized in preparation for scanning and emailing the necessary backup paperwork to the tax guy.  I’m doing ANYTHING to avoid looking at my tax documents yet again.

I’ve always over-paid my taxes to ensure that they have to write me a check vs. me writing them a check, but still I’m a nervous wreck.  So many changes happened in 2016, including buying a house, that I should be fine with all the tax write-offs.  But, still…

Having just come back from having a meatloaf sandwich, and now munching on some salted caramel pretzel fudge, I can see that I need to do a better job of buckling down.

April 15th is coming, and I need to get these done before that date.

bills chasing woman

Not just because I need my refund (the lawyer once again failed to mail my disability supplement on time, so I’m running late on the bills for the second month in a row!) in order to have some breathing room when life throws a spanner into the works, but also because I need to know the answer.  Did I screw it up, and I’ll owe them money or am I correct, and they owe me money?

Obviously, it’s better if they owe me.

But, what if I am wrong and I didn’t withhold enough?

tax-clipart-tax-preparation-790797-7323882