I Refuse To Be Discriminated Against

Handicapped? Moi? Yes, I do need to fight to keep my limited abilities

Today was one of those days. I worked my butt off this weekend and last weekend, and I was looking forward to going to see The Bare Naked Ladies in an effort to build memories of fun events during an otherwise difficult Summer where I am wasting my ”prime” time of wellness preparing my house for sale.

Smack ! Apparently I’m not handicapped ”enough” as I don’t have a handicapped placard on my car to demonstrate my disabilities.

While I mostly enjoy the challenge of enjoying myself despite any terrain issues, the reality is that I am handicapped. The combination of a hilly, mountainous setting, plus a long walk from the parking area, is a recipe for disaster and unhappiness as I deal with being frustrated by my body’s inability to allow me to pass for normal on an otherwise fun evening.

Rather than let the situation pass, I sent them a rant and I hope they will reconsider the abusive, accusatory messaging that accompanies their so-called ”warning” about fraud risk. Having purged this from my system, I can now get on with my life for today… whoever is reading this, I hope you’re having a good day.

Yes, this set my temper afire
The longest DM rant… part 1
The longest DM rant… part 2
The longest DM rant… part 3
The longest DM rant… part 4

It may not make a difference, but I feel better for getting this out of my system.

New Day, New Anger Drama

Why do they make it so hard to remain mobile ? ! !

Spent a couple of hours (HOURS!) on the phone on May 20th trying to arrange for oxygen for daytime use. I need a portable oxygen concentrator that can provide continuous flow overnight at 2 liters per minute, as well as give me options for running around during the day with supplemental oxygen for when my oxygen drops.

How I’m managing without supplemental oxygen when running around during the day – the Wellue SP02 Ring

Spent the weekend very actively, running around doing an art and wine festival. There were a few times when I know I would have done better having the portable oxygen concentrator, but that just wasn’t my reality.

When going out to walk the fair (I have to get my steps in, regardless of what I’m doing each day), I also stopped to buy a grape soda from Hillbilly Teas, and it was yummy. But, while I was walking back to our booth, the crowd was overwhelming so I moved off the main fairway and went around the fair via the street so that I could breathe more easily. Sadly, the SP02 went bezerk, to the point of vibrating, to let me know that my oxygen saturation dropped below 88%. The ring did its job, so that I fixed my breathing by taking deep breaths to bring up my saturation rates, but it left me wondering: what happens when the deep breathing trick doesn’t work anymore?

So, I sat down on the phone today to try and determine what was causing the delay in getting my portable supplemental oxygen unit.

Big mistake.

Aggravating, maddening, BIG MISTAKE.

I try to be reasonable, but when I’m being fed b.s. I find it very hard to control my temper.

In trying to figure out whether or not the Rx was approved (it was), I then had to figure out why no one was calling me to provide the necessary equipment… Big mistake. They have taken bureaucracy to new levels. Very low expectation or results levels.

Simply trying to reach the right person was a joke, as they have two (2) departments handling the portable units, and neither one is accountable. Not to anyone !

When I said I wanted status on when to expect my portable unit, there was a noticeable pause. When I reminded them that I had upcoming trips that I needed the equipment for, it was like a light bulb went off in the clerk’s brain, and she punted me to the “Travel” department. Angelique. Useless, f’ing Angelique that sent me the wrong original equipment for my household unit way back in January.

Angelique of SuperCare (Super We don’t Care!)

Angelique’s little girl voice joined me on the phone, and she started to ask stupid questions. “When are you leaving for your trip?” “When can you bring your equipment back?” “You’ll need to go to the store to pick up your equipment as it’s too close to your departure date (I told them June 10th)”.

When asked why I’d have to bring my “portable” equipment back, I was then told that the Travel oxygen department is different than the regular supplemental oxygen department and they only deal with loaner equipment.

When I asked when I could expect my regular portable equipment and not loaner equipment, she had no idea. Apparently, there is no equipment available.

Seriously ?!?!?!?!??????

I can walk in and borrow a unit, but I cannot keep it. Crazy.

She started to go into her tired old spiel again in her tired little girl voice, and I cut her off and said I’d already heard it and didn’t need to hear it again. Yes, I was short. Rude, even. Angelique gets all huffy and continues to try and feed me her canned spiel, and I cut her off again. Not interested. Already heard it.

We go back and forth for a bit, and I demand to speak with a supervisor, and there’s none to be had.

Angelique leaves me on hold for about 15 minutes and then apologizes and says someone among the supervisory staff will call me.

Yeah, ri-i-i-i-i-i-ight.

Why is this delay even remotely acceptible?

We can no longer obtain liquid oxygen due to congressional cutting of benefits.

We can no longer support our oxygen needs with faster than a 2-week (or longer) delay? Supplemental Oxygen is one of those “immediate” needs, and two (2) weeks or longer waiting is not anywhere near “immediate” response.

It’s ridiculous that one of the most progressive countries in the world cannot get out of its own way to help folks with medical issues live their best life.

Blazingly Angry

Filthy ! Look at how dirty the decorative pillow is…
When I made the bed with a mattress cover and new sheets, look at how filthy and poor fitting that comforter is…
Sleeping on a bare mattress because she insists on a cover sheet and they are no longer making her bed properly, with a top and bottom sheet…
Blood on the threadbare comforter…
More blood…

I would not leave a stranger to sleep in filth. It’s not acceptable for toddlers when their parent’s don’t keep their bedding clean and sanitary. It’s certainly NOT acceptable to leave a vulnerable elder with dementia in less than clean living circumstances, and that’s before we know she’s paying $10k a month to be safely warehoused.

Maddening.

I’m being told her prescriptions are 90 days past due, and that they will stop filling her Rx’s in July if the payment is not brought current.

When I butt in to figure out who is full of hot air, I’m assured that her pharmacy bill has been ”cleared up”. Really?!! can’t prove it by me.

I’ll help with her meds if I can afford it, but I am not made of money.

As a side note, my biz partner and I had a great weekend, did blockbuster jewelry sales (for us), and hope for more of the same at next weekend’s show.

I was hoping to use the extra money to pay for my Trauma Therapy assessment this week, and then put the rest toward my upcoming trip home for a memorial service…

My friend is worth every cent I just paid to keep her living in a sanitary manner despite being non compos mentis most of the time. She may not be able to see the filth, but I can and I will not allow the neglect to continue.

*This* (dramatic pause)
*This* right here is why I will always champion euthanasia.

The lack of human decency to care for my friend’s most basic sanitation needs by the staff charged with her care is maddening.

If they can’t see the filth, they need a different job.

If they don’t care about the subtle neglect, they need a different job.

May I never be ”warehoused” and unable to care for myself ever again.

Don’t help me !

PO Box for personal safety

I think I’ve written before that I acquired a stalker during my long journey among internet dating sites.

While I already had a PO Box for my business starting in 2003, I began converting all of my physical contact information to a PO Box for my personal safety, as well as following my Las Vegas Auntie’s departure from CA that left me virtually homeless and couch surfing in 2011.

That choice to put all my identifying documentation for residential purposes into a PO Box has also ensured that my stalker can’t find me, and that the lawyers can’t find me for trying to build a case that I’m a faker regarding my breathing difficulties and physical health.

Great book about being proactive in protecting one’s safety

While I don’t consider myself particularly paranoid, I also resent the automation of physical addresses online to try and pinpoint our physical location 24/7/365. What really makes me crazy is that the Post Office is supposed to be providing the verification data, but they don’t list all their PO Boxes as verifiable data !

I’m sure the government paying for the automated addresses has some linkage to The Patriot Act or other fraud avoidance scheme, but it’s maddening to be proactive about protecting my physical safety and privacy and have it make things like hotel and flight reservations hard to book because they want a street address. They insist on ”helping” me, when they should have a manual over-ride for ease of booking vs being a tyrant for refusing to book when they can’t match the address to something in their automated tools.

So, today was a jumble of steps, plus multiple phone calls, trying to ensure that I got my hotel booked at a decent price, pay for arrival a day earlier than I actually arrive so that I’m guaranteed a hotel room as soon as I arrive at 7am, after a red-eye flight.

Next up will be the rental car, connecting flights to FL and then back to CA, another hotel room, another car rental, etc., etc., etc. So far, it’s all on budget for controlling costs so I’ll hope that I have enough funds to get this all done between now and July.

I’ve still got to pay for my booking of a ”staycation” in mid-June, but I think that’s covered by a credit card (it all gets blurry when I’m juggling multiple tasks).

For now, please don’t ”help” me, automated tools, when it just makes loads more work.

Tomatoes, Redux

The side yard raised bed planter

Before it was made clear to me that the house had to go, I built yet another raised bed planter, added some wildflowers, a tomato plant (indigo blue heirloom tomatoes), and generally readied my side yard for this Summer’s veggie garden.

The 3rd raised bed planter – with tomatoes

So, I’d planted a bunch of cherry tomato varieties (with carrots co-planted to fight pests), and revitalized the water garden to welcome the lotus blossoms and keep the fish happy, it was a relief (a HUGE relief) to have the Realtor say all those things could stay as a bonus to the sale and not be a detraction.

I still remember our losing the Spring Street house and the new owners ripping out my Mom’s plants as we were moving out!

Insensitive. Heart breaking. Reality.

So, I didn’t have any illusions when I put my house on the market that much would have to change, and it wasn’t about my preferences any more.

My Roomie really loves the tomatoes I raise but has no idea what goes into a Summer crop. It takes 60-75 days before the fruits are ready to harvest, which means that the current crop will begin to ripen now. I began my plants in the middle of March, which means that I can begin harvesting by early June.

The second raised bed veggie planter.

Knowing that I need to plant now, at the townhouse, in May, in the hopes she’ll have uninterrupted (and free) tomatoes after the house sells.

She could not believe everything I put on the deck to get the raised bed (portable) planter ready. 4 bags of dirt. 3 oranges. Calcium harvested from my breakfast eggshells. (Yes, I enrich the soil, and will add worms once it’s up and running, LOL). Marigolds (pretty pest controls).

I was supposed to go back today to organize it all, but I’m too tired / headachy to drive safely. So, I’ll try again tomorrow. Nothing smells better than tomato plants.

Blue indigo cherry tomatoes – my first harvest from last week.

DE.TERM.IN.ATION

The dilapidated water heater door

This blog is all about me. Usually. Today’s story is about a neighbor, in his late 70’s to early 80’s, who was a finish carpenter. He also suffers from worsening hearing, COPD, sour gut, etc, etc, etc.

W* still hires himself out as a handyman, which is great, except for his failing abilities and his perfectionism.

Don’t get me wrong; I have my own moments of perfectionism. But. Our shared disease can break the perfectionism disease in anyone. Usually.

Where I left off on my ceiling repair…
He even emptied the stuffing & repacked it !
Cut to fit drywall, tape & spackling !

So, is it any wonder that I’m amazed at his level of determination to keep at it until he gets a project done to his satisfaction – especially when it’s someone else’s home and they are telling you ”it’s good enough”.

It took over two (2) weeks to get the door replaced (plus three (3) 4-hour long car rides to get the door, get a second door, go back to the first door and return the second door for a $45 (15%) restocking fee). But, we got through it and as of today the three (3) projects are done. Phew !

Finally !

Yes, I’m handicapped. Yes, I miss the challenge of work. In 2027, once my supplemental salary benefits disappear as I age into official retirement, I hope I have half of W*’s determination to keep on trying. To keep on reinventing myself. To survive despite the odds.

Calling Miss Manners…

Miss Manners, aka Judith Martin

Dear Miss Manners:

My mother passed away in 2005.

My older brother passed away in 2011.  I was at the funeral service, having flown back and forth once or twice a year from my home on the opposite coast to personally inquire into his needs and to keep my connection to his wife and sons strong in their time of stress and sorrow.

Although I had moved away from my family 20+ years earlier to stabilize my own health, I love both my siblings, their spouses, and children. As two spinster ladies, if you will, I spent Summer vacations visiting with them every other year with the help of my Mom, their grandmother. She and I would rent a cottage at the shore every other year, we and very much enjoyed the chance to vacation with my siblings, their spouses and children.  

On two separate occasions, when the boys were old enough,  I flew 2 sets of the nephews at a time, including their Grandmother, out to my coast for a kid-focused special vacation.  When their Grandmother was terminally ill, I flew home to live with her for a year so that she could have hospice services at home.  During that last year of life, we all pitched in to care for our Matriarch, and I thought our caring bond was mutual and strong.  

While their Grandmother has passed away, I have continued to fly back and forth for every family or nearby social event – graduations, reunions, regular vacations, etc. – I am invited to. I looked for any excuse and opportunity to spend time with my family.  However, I not realize that my moving back to the opposite coast somehow cost me my family membership card.

My sister’s oldest invited me to his 2013 wedding and I happily attended, even building a vacation around that time period to fully participate. Thereafter, despite being disabled as of 2015, any time I’m in town and want to visit and meet the next generation of kids, they are always too busy for me to drop by.

Next up, my brother’s oldest did not invite me to his 2017 wedding, although I was listed as a friend on his and his bride’s facebook accounts. Again, calls or notes to my widowed sister-in-law began going unanswered within a year or two after my Brother’s passing, but it wasn’t until I wasn’t invited to my nephew’s wedding or any of the engagement activities (in my own coastal back yard) that I realized I’d been excommunicated. REF: ”Pariah

Now my brother’s youngest is getting married, and there is no sign of an invitation to what would normally be a “family” event.

Added to my hurt is a core question for today’s etiquette-challenged.  Are Aunt’s and Uncle’s no longer considered “family”?  With the passing of siblings or parents, does that mean that the family tree is pared back to remove older growth?

I’m thinking it has to be some new etiquette as FMLA benefits commercials often talk about folks getting time off to care for their parents or grandparents, but those same commercials are absolutely silent on caring for Aunts and Uncles, never mind family members who never married or had kids of their own.

I don’t think I’m a toxic relative as I have always tried to be loving, considerate and caring.

However, I’m left wondering… Did I truly lose my seat on the family bus as life moved on without me marrying or having kids of my own?  Is that the only way we recognize family nowadays?  A relative must have never left town, and they must have married and had kids of their own, in order to be part of a family?

Still heartsick 4 years after not being invited to #2 nephew’s wedding, and the repeated omission for #3 nephew’s wedding later this year is really bugging me.  Can you shed light on some change in social practices that I have clearly missed?  Thanks in advance for any illumination you can provide.

Signed,

Yes, I’m the proud but heartbroken Auntie

Surprisingly Freeing

Picture it: May, 1975. Family and friends walking hundreds if not thousands of personal possessions from my family home to the curb. Strangers waiting like vultures to see what treasure was being discarded feverishly as we worked desperately to get everything out of the house. My father, always referred to as Daddy Dearest after seeing that infamous Joan Crawford biography, had successfully sued to get my family home auctioned out from underneath us, even before the divorce was final.

Not paying child support, not working reliably over the term of their marriage, he was determined to wrest every penny of value Mom had put into the house and into refurbishing me. She’d convinced him to be an adult during their marriage, to try his best to be the caring father, or, eventually, to protect me from his enraged frustration and resulting violence with my endless repairs and expenses, and he was done. Not only done, but determined to raze the family home and salt the ground on his way to whatever his future without the burden of a wife and children might hold. She’d kicked him to the curb, and he was not going quietly.

Tagging items for rehoming following a community-wide yard sale, or eventual donation

One of the hot spots that remained in my life after my family home broke up was an overwhelming sensitivity to the stories of loss and unwanted change that yard sales represented. Heartache I wanted to part of for dealing with other people’s baggage.

I would NEVER participate in a yard or garage sale as it would cause such sorrow over remembered stress and traumatic memories that it was always just easier to jettison anything that wouldn’t fit into the next chapter of my life vs. trying to salvage some cash from once-loved items I could no longer keep, or which had been destroyed or become too heavy a burden to carry in whatever the latest crisis happened to be.

Fires, floods, explosions – I’ve dealt with a repetitive need to rebuild my life after a change of circumstances – and each time I’ve salvaged things from the ashes as well as rebuilding fresh.

As I’m moving the indoor fish to the outdoor tank to make it easier to get the house emptied out while also still enjoying the garden while I am still living here, it’s getting easier to let go of all my stuff…

Of course, one of the water lotuses decides to bloom today. I’m going to miss the garden and this years crop of tomatoes. But, I’m feeling so much better to get out from under the responsibility of home ownership.


Hustling…

I’m going to hide among my toys… get on with you, Hooman !

So, I got the rocking chair, hassock and one of the cat’s beds washed and moved into the storage unit while tagging things to sell / give away if they don’t sell during our community yard sale later this month.

Herself is not impressed by all the furor and movement, and has retired to her other freshly washed living room bed under the sewing machine where she is safe from my traipsing back and forth to pack up things and load them into the car for delivery to the storage unit.

Got a bunch of specialty boxes at Uhaul this morning, and I’m hustling to get everything sorted as quickly as possible if there’s any chance at all of hoping that I can get out of here and sell my house by May 31st.

If we can’t close before the new sewer and utilities regulations take effect on June 1st, I can see that there is a grant which might cover half the equipment replacement costs up to $2k, as well as a second grant program for repairing any underground sewer lines up to $5k or half of the actual repair costs. There is also an option to get the Buyer to assume responsibility for the certification process during the sale, with up to 180 days after the close date to comply with the new ordinance, so my goal is to get my house on the market and sold as quickly as possible to enable access to any remaining grant funds, if at all possible, since the $100k allocated could disappear pretty quickly once the program starts.





Spending tonight emptying the curio cabinet so that I can see if I can sell that next weekend over fb Marketplace. Very pleased with how quickly one of my stained glass lamps sold on Saturday / Sunday.

Sadly, my bowling buddy broke out in shingles last week, and it’s spreading, so we’re skipping bowling tomorrow. Ah, well, more time to drive Katie crazy with my packing efforts.

I hope anyone reading this is having a good day.

Traumatized, Really?

So, I’ve been thinking about the palliative care team’s suggestion that I seek trauma therapy. In the moment, I was trying to take in everything they said, and I didn’t think to ask, ”Why do you think I need such counseling?”

It’s really thrown me for a loop, being told to seek trauma therapy from a single meeting with professionals who are supposed to be skilled in dealing with patients with co-morbidities who aren’t yet at hospice care level for services, but who wish to get off the merry-go-round of aggressive medical care.

Is my determination to have my wishes respected with regard to euthanasia and day to day care choices really a sign of trauma? I don’t think so. But, wait, isn’t the refusal to accept a medical recommendation a sign of self-destructive behavior and part of unresolved trauma?

Looking to connect with the MFT Grief Therapist I engaged to talk through my issues following the end of my working life and adjustment to my next chapter in life, it appears that she may no longer be active in the field as a voicemail left tor her has received nothing but silence.

In addition to all of this being stymied with moving on to ensure I have a team who will support my quality of life wishes as I spend more time in pain, less time sleeping at night due to that pain, etc., etc., etc, I am thinking about my decision to sell my house and now doublechecking myself to ensure that my particular problem solving solution to IRS debt isn’t a result of dysfunctional thinking. Maddening.

Outwardly calm, while the back of my brain juggles all the positives and negatives

I’ve talked to the tax guy.

I’ve talked to the Roomie, who is willing to have me be a roommate yet again.

I’ve done a mental assessment about preparing to sell my home, and set Fall as a goal to get this done and to put my house on the market in order to clear any outstanding IRS debt once the filings, offers and compromises are pinned to a specific number. I’ve looked at what should be sold, scrapped, or given away as part of downsizing my life to prepare for the next stage, and I keep thinking:

– I’m functional

– I’m not depressed

– I’m not hurting myself

– I’m not hurting anyone else

– I have a plan to move into my own place at some point

– How can this be unhealthy / trauma-centered living?

I have no idea. I’ve previously been to a Grief Counselor who seemed to understand my goals and recommended reading material on accepting death as an inevitable part of life and pre-planning to eliminate trauma. If I could get to that therapist, I’d feel more comfortable having an assessment (based on our prior relationship, to save time in finding talking space with each other) as to whether or not I truly need trauma therapy.

My version of therapy.

I’ve been looking at the various therapists in the area who deal with grief and trauma, and narrowed it down to a person in a practice with six therapists who might be a match, based on their online profiles, so I’m not ignoring the issue. But, why does this feel like a game of choose your own narcissistic neuroses vs. something that will aid my life?

Yes, crying and getting a yippy french poodle voice when trying to talk through stress or high emotions is not healthy. But…

– I *am* talking

– I’m not silent and simply crying

– If the listener / viewer can ignore my tears and tone, I can articulate what needs to be said and get through a conversation that I clearly don’t enjoy having.

– I can hear what the therapist has to say, and act on their suggestions.

– Isn’t that the goal of therapy; to face your fears and persist?

– Do I really need to spend another $250 to a couple thousand on trauma therapy?

No answers here, but I am making progress in fits and starts to continue moving on in my life and streamlining my finances to eliminate my biggest financial headaches. I can’t see how anything I’m doing is anything but practical thinking vs. bad decision making.

As I said to the houseguest when she was wanting to own a home of her own, ”How are you going to pay for the repairs and upkeep?” I’m facing that decision myself, as I haven’t had a working furnace since February 2020, and I don’t have the $7.7k to replace it. The $700 portable 4-in-1 HVAC window system is working well enough and adds the benefit of AC in my home, but is not a long-term solution for sustainability or resale of my home.

At this point, I can invest $1k or so to repairing the furnace (vs. replacing it) to get through the home sale and keep my offers high enough to get what I need from this property, but do I need to do so in order to prepare my home for sale, or can I get enough to clear my IRS debt and start fresh with the house as is?

Next week’s goals include contacting the home sale agent of my choice, as well as contacting one of the six therapists to see if I can get an initial assessment about whether or not trauma therapy will make a difference in my quality of life, financial and eventual end-of-life choices. Best I can do for now to consider the advice I’ve been given.