Devil Dogs

June 1, 2011’s anniversary is coming up. Big Brother passed away 10 years ago this week. Glioblastoma, or, more simply, a fast-moving brain cancer. Despite his determination to outrun the odds, Big Brother fought valiantly for 18 months before his worn out body gave up.

10 years since I’ve seen Daddy Dearest, his wife, Shorty, and had to deal with Baby Sis’s hurt that, even in the presence of death, Dad had zero interest in her or my Big Brother’s imminent passing, and was chasing me around his living room in a crazy game of musical chairs, trying to get my attention.

Pictures, family photos, were a fight-worthy prize in our dirty little divorced family never-ending war. Daddy Dearest was holding out a prized photo album – one he denied having – and which had caused such a war of accusations and fact-checking among we three surviving children of his first marriage.

My brother was sleeping in a chair across the room while life slowly seeped away, and Daddy was causing drama trying to get my attention with photos while Baby Sis paced behind him, trying to get his attention and a chance to see the photos of her childhood, of which she had few happy memories.

I don’t need Mom’s stolen photos, even if I would have liked to have seen them, because I have actual memories. And nightmares.

Not being able to get any satisfaction from me (because my only goal was to get through that farewell visit to say goodbye without any drama), I was happy to see my Baby Sis leave that night with the photo album clutched to her chest in victory. And fear that it would be taken away from her. Such were the ups and downs of emotions and priorities when Daddy Dearest and his often overlooked second wife were around.

With all the genealogy research I’ve been doing on Ancestry.com, I’ve been dying to pick up the phone and quiz Daddy Dearest about what I’ve found out so far about his own father’s challenging life, vs. what he has believed or the stories he’s told himself when the man who raised him wouldn’t talk. It’s the stories we tell ourselves to justify our feelings of depression or anger that get handed down through the generations

Is bitterness and anger / depression at thwarted dreams my legacy from my paternal side?

Is acceptance of what is, and happiness despite life’s frustrations, my legacy on my maternal side?

Family trees are funny things. Depression runs rampant in many branches on the paternal and maternal sides. There is always plenty of cause and justification for depression and anger on many sides of our family tree, and then you see the breakout branches of happiness and success despite the clear odds, and it just leaves me shaking my head.

My focus is on memories vs. tales.

I’ve spent so much time debunking stories my Baby Sis and Cousin L have made up, that I sent Cousin L the Gettysburg address of research years back, debunking every lie she had been told with public records which captured the facts at the time they occurred. Sadly, she still thinks there was money to be found as her legacy. And, she believes the lies Daddy Dearest told both she and Baby Sis when his mother, our Nana, died. No, Nana wasn’t being kept alive in Florida or the Caribbean through Uncle Bobby’s CIA-linked machinations to wrest Paul Revere’s Sugar Company fortune for himself, stealing from Daddy Dearest. But, just as QAnon has caused people to believe the most outrageous and fantastical, beyond credibility tales, so has Daddy Dearest caused belief in craziness in some members of our family.

As I’m going through the public records, I’m seeing more evidence that we are connected to the owners of Kelly’s Roast Beef (a beach community staple for years and years, now expanded to even more success). I’m so convinced if it, I’ve sent Cousin L a copy of the book, “Growing Up Irish Catholic (and surviving my Mom’s 11 sisters)” so that she can read it and decide for herself if that branch of the family isn’t a dead ringer for many of the crazy personalities and overlapping timelines and places we have with a different branch of our family tree.

But, to get back to my Big Brother… it’s been 10 years and I think of him often and miss him every day. If heaven exists, I hope he’s reunited with our Mom, our Uncle Andy (just a few short years older than him when he passed), and having a Devil Dog in a private replay of a magical moment with our Baby Sis.

I hope he’s out running, and biking. Playing hockey or baseball with all the little kids in heaven, and smiling his happy smile because he knew life was too short to waste it being miserable.

Life is truly what you make it, and he chose to make the best of it at every turn. Probably our maternal genes showing up, as Betty was a survivor, but she made some pretty terrific kids despite any momentary blips that might encourage anyone to think the contrary.

Oxygen? Pulmonary Rehab?

Trying to figure out my latest test results. To be fair, I tend to talk the doc to death, but I need printed and verbal information in order to comprehend what I’m being told is happening with my body.

As I complained about in a prior post, I *hate*, *Hate*, *HATE* when they change the type of tests being run, and the test results aren’t consistent.

Not saying one can’t have multiple and various testing options, but I am saying that it’s the medical profession’s DUTY to ensure that the patients are understanding what they are being told. Especially if you’re telling me that I should try pulmonary rehab and might benefit from using oxygen, but don’t want to answer questions about what I understood you to say, and you don’t want to prescribe either item until I’m assessed by the palliative care team.

Seriously ? ! ? ! ! !

Comparison from 2014 Test Results – 33% lung function – still working full time; exhausted
Comparison from 2019 Test Results – 27% lung function
Disabled; still exhausted but can now rest when safety demands

As you can see, there are minor variations between the two test outputs, but the format is basically the same. I can figure out which key number I’m tracking – the meld between the FVC (Forced Vital Capacity) and FEV1 (Forced Expiratory Volume). Most people force 75 to 80% of their lung volume out within the first second. As you can see from my graph, I can barely take air in, and it takes forever for me to force air out.

My asthma has progressed from being labeled asthma to being labeled “small airways disease”, or “emphysema”, or COPD. Whatever term is necessary to explain to someone that they can’t breathe well. I don’t care about the labels. I care about how I’m feeling, and how I’m able to describe in layperson’s terms what I’m feeling without being dramatic or feeling like I’m going to die any minute (Trust me, I’m not. This disease is called a “wasting disease” for a reason).

However, I tell you all that to tell you this – understanding your test results is a critical aspect of self-care.

Not to freak you out, but to ensure that you are truly hearing what the doctor is saying, which is often different than how you feel and how you treat your body – your machine to function in this world.

So, I access website pages like: The American Academy of Family Physicians

to ensure that I am paying attention to what the tests say, how they say it, and what the doctor says as he’s walking me through the testing while throwing what appear to be general comments at me that are, in reality, very specific ways to drop keyword bombs in the patient’s lap without them overreacting due to terms they’ve never heard before.

Let’s face it – most patients tune out what they are being told. I get it. It’s overwhelming. BUT !!! When I have shown you that I want to understand what’s going on, don’t stonewall me.

During the March appointment, the doctor decided to tell me that my pain was probably “connective tissue disease” as a throw away comment. Since he’d never used that term before, I had to spend time researching it to find out that it’s a non-answer for my pain, and indicates general inflammation and abnormal reactions by the body so that it’s always upset and always reacting to things that a normal body would take in stride.

Great. But that still doesn’t address my pain ! I have a label, but not much in the way of useful information.

So, during this appointment we talked about the fact that I’m still awaiting a response from the palliative care team to see if they can deal with my ongoing neuropathy and pain issues. We also talked about the fact that I want to know if Pulmonary Rehab might help me (shrugs – it can’t hurt), and the fact that the pulmonologist has now stepped back from my active care as he wants to see what the palliative care team may decide to do. The care team that won’t even get to me for another 5-8 weeks… Fine. Not happy with the answer, but FINE.

He knows he will still be my primary doctor. He knows that I rely on our 25+ years together as someone strong enough to deal with me and my need to truly understand what’s going on. But, he’s stepping back from my care while I once again – probably fruitlessly – butt heads with new doctors as we learn each others personalities and I have to argue them to death. Fun? No. Necessary? Yes. Very frustrating for someone with PTSD like me for hating to deal with new people, hating to have to disclose intimate information and personal quality of life choices to a stranger… yep, I’m not looking forward to going through this, but when the professionals don’t give you answers you can use, or answers you can accept as in your best interest, you have to keep trying.

So, I told you all that to tell you this – it’s frustrating to have to be your own champion, have to keep you temper and your frustration in check, and still have to be cordial and pleasant while you try and wrestle workable / useable information from medical professionals.

Just like in the Legal profession, the layperson (the patient or client) has a right to participate in their own care and in their own defense. But, the medical and legal professionals would prefer we all just do what we are told.

As if !

You know that’s not happening any time soon with me, and certainly not before I understand the “why” and the causes and effects of not listening to what I’m being told to do. Yes, I must fiercely resist touching wet paint, and I don’t always win that battle, either.

So, to go back to the original point of this post: pulmonary function lung tests and results. As you can see from this particular test result (not mine) most lung function tests show much higher lung volumes and results:

Reversible Obstructive Lung Function PFT Results

In my case, my numbers are so far off the normal range that I can barely get the tests to track my data.

Page 2 of May 2021 PFT test results – new test reporting
Page 1 of May 2021 PFT results – new test reporting

Looking at the new version of the report, and the data provided, left me cold.

Nothing was where it should be, and I was really struggling to understand the test results – especially as the doc had said, “hey, your breathing is 40% better” – really? When? How? Maybe after the bronchodialiator that wants to rob me blind for cost, gives me the shakes and rashes, oh, and impacts my bones plus gives me the bonus of cateracts and eye issues? That “40%” that we’ve argued to death over the years??? Hmmm…

On top of that, he ran a nitrogen test and said that I’d lost 40% more of my small airways.

I’m sorry, did I hear you right? I’m 40% better breathing (maybe with a bronchodialiator, the answer is still pending on that question), AND I’ve lost 40% more of my small airways lung function, and maybe it’s time to consider going on oxygen… What the heck ?!!!

I realize that the doc doesn’t like not having answers for me that I’m willing to accept in terms of treatment options, but that doesn’t mean that you can do a dump and run on data, and leave me adrift to try and figure out what you were actually SAYING vs. what I thought I heard.

Maddening.

So, I had to chase the doc for 2 weeks to get the test results, and now I’m having to chase him to understand exactly what he meant with his throw away comments during testing. Aggravating.

Figuring out the 2019 vs 2021 test results – page 2

Looking at this new vs old test comparison, it looks like my lung function volume was 27% of normal. It looks like the flow volume loops were much larger than my 2019 test (where no bronchodialiator was used) so maybe that was his sales pitch showing up in his comment that I had a 40% improvement – and probably after bronchodialiator use.

If that’s all the improvement I get, then I swear by it not being worth the cost and the aggravations (bone pain, rashes, irritability, eye issues and possible cataract surgery in my future). Nope. Not worth it !

Figuring out the 2019 vs. 2021 test results – page 1

As you can see, what I used to get on a single page now takes two pages, and I have to dig to figure out what’s happening with my body. Very frustrating. But mostly because I need confirmation that the interpretation of the results is accurate ! Once I have a chance to hear from my doc, then I will feel better. For now, it is what it is, and I’m left in the dark to find my way to knowledge. I’ve just got to suck it up, and keep these documents handy for our next zoom call, since we’re not meeting in person next time.

Looking at the numbers portion of my tests, I was an average of 27% in 2019 for useable lungs / lung function. Reading my latest test results, however, I am now at 16% of lung function without using any bronchodialiators. Well, that could certainly explain my exhaustion when trying to do chair exercise classes.

But, if I’m reading the test results correctly, even with bronchodialation, I’m only getting up to 20 – 25% of lung function. And gaining a whole bunch of other issues that I decided long ago I wasn’t willing to deal with if I decide to use bronchodilators. Maddening to have to fight this battle again.

So, for now, I’m not on oxygen. For now, I’m not yet under the palliative care team for aid.

I’m doing everything I can to continue to enjoy quality of life without extending my quantity of life. I’m still a fan of euthanasia as I don’t want to stick around for the end of life “wasting disease” period. I’m already in enough pain and sleeping poorly enough due to neuropathy that I don’t think I’m wrong in hoping for the end.

No one wants to choose euthanasia, but if it’s a battle of wits and stamina, I’m already losing most of that and don’t wish to continue fighting. Since mine is a birth defect, it’s been 60 years of incomplete and damaging treatment options to achieve life to this point, and since I’m in pain every day, I’m ready to go when my time comes.

Numbers Confusion

Goal-oriented breathing test (pulmonary function test – PFT)

Finally got the long-overdue breathing test yesterday, and am more confused than ever since the test had changed (yet again), and the information the doc was giving me verbally didn’t match expectations for prior test results.

Old-school breathing pressure test

In particular, the doc said I was at 40% for my FEV1 / FVC – which was a huge improvement over my prior range of 26-29% for oxygen saturation rates.

However positive that information may sound, the reality is that I’m feeling more tired to the point where I no longer drive for exercise class as my oxygen saturation drops into the mid-80’s when I wear my oximeter while exercising and trying to figure out what’s happening, and the tiredness / exhaustion is making me a danger on the road for driving home after class. So, telling me my lung function is better (maybe he meant after the inhaler?) while also telling me I was still disabled with COPD makes no sense.

Add in the fact that the pulmonologist then went on to say that I’d lost 40% of my small airways lung function since my last test almost 18 months ago, and that it might be time for oxygen or different meds (that I have trouble tolerating), and I’m more confused than ever.

Now, try and breathe normally so we can test your lung function…

So, my test results haven’t been posted yet, and I’m chasing the doc to have them posted in the portal or emailed to me so that I can look at them at my leisure and try to figure out what’s really occurring.

Frankly, if docs are going to run NEW tests, I wish they’d also run the old style test at the same time during the first new test for continuity of test results / comparison over time when we are moving to a different testing model.

2014 Test Results – the day I was leaving for Australia
2015 test results – 4 months later, with meds that aggravate quality of life and give me a whole other new set of issues. Not worth it !
2019 – yes, I’m still non-compliant with recommended inhaler meds. I don’t want cateracts, rashes, inability to drive due to blurry vision, etc., etc., etc.

In my case, yesterday’s test used to be delivered in a plastic box, then it was a test without the box. Next, it was a series of “goal” oriented tests where I had to keep the bird flying over the water (and not fall in), or get the sun up and keep it up during the time of the test. Yesterday was the classic pressure / shutter test shown in the image above, without any incentive graphics. My glasses were off. My nose was pinched shut. I didn’t have to hold my cheeks, but it was a version of that same pulmonary function test I’d done a few years ago, before we switched to the goal-oriented graphics test.

This test shows someone working to blow out candles – this is a version of sunrise / bird flying graphics that are goal-oriented to incent someone to become competitive and blow out the candles using their best efforts to “win” against the testing goals.

Goal-oriented “gaming” or incentive testing
Goal-oriented testing shows only one candle remaining lit

Once the test is done, you get a report like this one so that you can understand your results over time:


So, no answers here, yet, but I hope I get a copy of my latest test results soon so that I can begin to compare the format to my 2019 test results so that I can better understand the latest info. Even if I’m only a layperson, I have the right (and, frankly, the duty) to be involved in my care and to make informed decisions about my quality of life.

I’m all for newer and better tests, and methods to try and get us to take these tests seriously by tagging our internal “competitor” for trying to get us to better comprehend the goal of the testing – getting you to try your hardest and not giggle from the silliness of the tests, etc., while trying to pattern the breathing so that the person doing the test shows accurate breathing patterns under specific circumstances which would never happen in real life (i.e., the standing up and breathing into a tube in a variety of hard and “natural” and unnatural breathing patterns).

Neighbors

Judgy Neighbors

It’s been a crazy week. Trying to get to the root of my friend with dementia’s personality change, while not overstepping the boundaries of friendship and the acknowledgement that I am not family.

So, I took her for a haircut. And paid for it since she’s hidden her wallet and can’t remember where her debit card and ID are stashed. While I will get reimbursed, eventually, from her family in Canada, it still takes a lot of diplomacy to not want to shake the life out of her relatives who neither understand the intricacies and expenses of managing her long term care needs as her dementia progresses, and who aren’t here to handle paying for things my friend can no longer pay for directly due to the tricks her mind is playing on her to increase her paranoia as she loses more and more of her personality.

Anyway, I told you all that to expand on my spoon theory posts as I work to meet all my commitments while battling exhaustion.

Spring’s normal warmer weather is making me happily more active, but it’s also increasing my exhaustion as I try and do more in the better weather.

So, after a surprise call from one of my many cousins this morning, I was exhausted, chilled to the bone (despite an ambient temperature outdoors of 75 degrees or so) and went back to bed to try and warm up.

My plans to try and clean my friend’s assisted living apartment had to be cancelled as it was no longer safe to drive and my energy “spoons” had been used up for the moment.

Into this comes the well meaning but busy body Mah Jongg hostess, Gladys Kravitz, who decided to drop by unannounced to discuss the skipping of our next Mah Jongg playing session.

Greeting Gladys after being roused from bed

Needless to say, it was quite ballsy of Glamorous Gladys to give me the head to toe hairy eyeball after dropping by without notice and waking me up. Clearly, Gladys was put off that it was 1:30 in the afternoon, I was still in my PJs, and hadn’t yet gotten dressed or groomed to start my day…

Glamorous Gladys

What was really shocking, though, was to hear her wonder aloud as she left my home as to when or if I was in the process of cleaning or moving… not a kind nor a helpful comment when someone is not my intimate and is more of a friendly acquaintance.

The view from my driveway door.

While she has a right to her opinion, I was shocked that she said it out loud !

Yes, my driveway contains items which need to be sorted through and disposed of, but if I’m not asking her to pick up my mess, then she should keep her mouth shut !

Just be kind, ok? You don’t get to decide someone else’s priorities for how they sort through getting rid of or rehoming the treasures of a lifetime.

Meanwhile, I’m grateful she didn’t notice the other work in progress areas in my yard…

Gardening is more fun than cleanup
Oh-oh, the gardening bin is not put away
Don’t even look on the porch or in the side yard if you don’t want to see work in process…


The other door reblog

Alexander Key – The Forgotten Door

I don’t come to my blog as often as I should. If you’ve followed my posts, you know that I’m either out in the world trying to stay healthy, or I’m out cold, lying in bed, trying to recuperate from life as my battle against COPD, and the aggravating disability justification paperwork it also brings into my life, are pretty time consuming for wiping out my energy.

At any rate, I tell you all that to tell you this – I love Rachel Mankowitz’s blog posts. Full of every day bits of life or whimsey or religious dogma comprehension challenges for a teacher to address with her students; I never know what I will get.

Today, her post: The Other Door

hit my sense of whimsey as she posted the questions of hope versus reality and what her dogs might expect from life depending on which door she might choose when taking them out for their daily walks. In their doggy brains, every day is sunny and wonderful from the comfort of Rachel’s home… until she chooses the “other” door than anticipated, and she’s presenting them with cold or rain vs. their hoped for sunny day.

For whatever reason, it took me back to a favorite book that I read when I was 10 years old and struggling with reading comprehension as I fought my dyslexia and need to think in pictures as part of reading.

The Forgotten Door” by Alexander Key opened up the world of fantasy, science fiction and whimsey, previously only available when my Mom read to me at bedtime, and my mind could roam freely within the colorful mental images the story promoted. Without the need to translate letters into words and then into pictures, first, the story opened up worlds for that the hard work of battling dyslexia was trying to take away.

Struggling with reading comprehension, my brain would work to distract me with the pictures of the letters, rearranging them in my head, until I lost all concept of the story because I had fallen down the rabbit hole of spelling idiosyncrasies and couldn’t link up the necessary mental images to allow me to comprehend the story the written word author was trying to share.

For whatever reason, hearing the written word is much easier than reading the actual words.

Additionally, as diabetes attacks my eyes, I listen more and more to audio books vs continuing to exhaust my eyes by reading the written word. It’s not a complete moratorium against books, but as I spend more time on line via the iPad (tablet), I find that – even with the retina display to try and protect my eyes – they are easily fatigued, so text reading of a book for more than an hour is just not happening. I need to protect my eyes from fatigue, as reading too much causes blurriness, and I am not willing to give up my driving ability due to exhausted eyes.

Back story: I had my first eye surgery at 2-3 years old, after I fell down a flight of stairs and they realized my lazy eye / crossed eyes were not working properly, forcing my father’s hand for yet another reparative surgery to address yet another birth defect. As the diabetes is ravaging my body to throw everything into turmoil, it’s also attacking my eyes. Birth defects – the gift that keeps on giving.

At any rate, I tell you all that to tell you to both enjoy Rachel’s blog, and to also check out this Scholastic fantasy story aimed at young adults. As the book blogger, Thomas McNulty, so accurately summarized in his synopsis, this book holds up very well 55 years after it was originally published in 1965.


Zooming for your passions

“Time In Nature”

Tagged to speak on behalf of our active seniors, I was privileged to interact with one of my favorite local TV personalities, Doug McConnell. I’ve taken many guided tours with Doug as part of trips through the Sunnyvale Senior Center, and I find him a wealth of knowledge while trying to safely explore interesting points of our state and local counties.

So, having been tagged to ask a question during the conference, you know the internet had to take a dive.

I’m going to presume it was my internet, as the show was still wonky once I gave up on the laptop and switched over to the ipad. But, like any zoom conference, I sucked it up, and we got through it, glitches and all.

Our Daly City host.
Doug McConnell, during his presentation of all the local open spaces
Listening Intently while Doug talks

I was freshly showered. The curtains were up so that people didn’t have to look at the fishing rods and background wall clutter in my bedroom… and then Daly City’s video went dark (note the green square above), and Doug’s oration began to go wonky.

I may get in trouble from the lawyer for participating in life, but the questions that I asked were important to me and hopefully others – “Where can still active but handicapped older adults go to have access to benches and open restrooms while still getting out and spending time in nature?”

I was very pleased to see that others were asking where they can go in a wheelchair or scooter if they have limited mobility and not total immobility. While the video cut out during Doug’s answer, for anyone from the bay area reading this piece, I’m happy to post a link to a local blogger who writes about this very issue:

https://irishsea-mark-videos.blogspot.com

Not being in a wheelchair, my needs are different than Mark’s, but it’s a good way to start to figure out places that I may be able to walk without too much difficulty, so long as I don’t need access to a bathroom every 30 minutes to an hour.

Here’s how Mark rates trails that he can traverse safely:

In my case, I’m trying to walk the trails, and Mark’s rating is “somewhat” helpful, but because I’m doing the actual work of walking, which is exhausting with my COPD, there are still areas of improvement needed.

In my case, any time there is a grade (that 0 to 5% incline Mark mentions in his chart is my “maximum” grade for comfort, unless my hair is on fire and I must deal with a slope). In my case, I become short of breath from the simple effort of moving my body uphill. The most gentle of slopes can cause my heart to pump like crazy, and I need to stop and catch my breath. A bench would be nice, but those are few and far between – it’s usually a mile or longer between benches. As for bathroom access – ha ! I may need a bathroom any time I exert myself, so while I need more benches, I also need more bathrooms or port-a-potties (because no one wants visitors going off trail and trying to find a convenient bush).

To compare the ratings for what the local open space authority considers “accessible”, I’ve put my rating on a few of their handicapped top 5’s that I’ve traveled on foot vs. in a wheelchair.

One accessible (1) parking space?????
This was not an “easy” trail. Remember that most summaries are written by well-meaning folks who think if a 5-year-old child can walk an area, then older adults with mobility issues and hidden handicaps should be able to walk it, too. No. Not really the same.
Weekdays only; early. No parking otherwise. Great place to visit and walk as it’s windy and refreshing, but it’s incredibly crowded, and there are no accessible bathrooms along the walk area.

While I only rated three (3) trails, you can see from my comments that I disagree with most of the ratings as being too difficult for handicapped walkers vs. scooters or wheelchair access. As limited mobility walkers for handicapped advocates, we’re not going to find one size that fits all handicapped visitors, so you’re going to have to make your own ratings.

Sadly, as most open space authorities use able-bodied people as part of trying to assess what level of handicap the individual visitor may have, assessing how challenging it may be to allow someone to get out in nature without exhausting themselves from the effort of simply showing up – never mind actually trying to enjoy the trails on their own two feet – just isn’t addressed.

At the end of the day, if you are not handicapped, you most likely won’t understand the competing comorbidities and challenges that may keep folks housebound. Access to bathrooms is a key reason people don’t leave home. No place to sit and rest up is another stumbling block.

We’ve come a long way in my lifetime, but we need to do more for older Americans who are trying to stay active despite the barriers their invisible disabilities may present. One key issue: Restroom access, and the second key issue: benches for seating at quarter mile or sooner intervals. Not just “at the trail head”, and not a couple of miles in on the trail.

Having able-bodied people trying to help is a great start. Ultimately, though, we disabled people who live on the “spoon theory” for trying to have enough energy to get through the day, and who have invisible disabilities in terms of incontinence and energy levels, need to get involved to try and ensure that their local open space areas do a better job of understanding what “might” help older Americans stay active despite their invisible barriers to mobility and wellness.

REF: The spoon theory for anyone unfamiliar with that energy management tool

I used an hour and a half of energy to talk to a cousin today, so I needed to cancel my plans for the rest of the day and go back to bed to nap in order to have the energy to socialize with a neighbor tonight to play dominoes. The most simple tasks are exhausting for limited energy folks.

Audit Insanity

If you’ve followed my blog, you know that I’m regularly audited to “prove” I’m disabled. As part of that audit, I’m not allowed to volunteer my time for any worthy causes on anything approaching a regular basis, as the auditor’s fraud theory is that any kind of effort to stay connected to the world is time I could be earning a living and not collecting matching salary benefits due to my disability.

So, I tell you all that to tell you I participated in a Zoom call today where they asked me to participate as a disability advocate full time, and I had to decline as any type of regular participation in volunteer work will be used as another piece of “evidence” that I am defrauding the insurance company because I’m well enough to occasionally participate and volunteer, but not well enough to hold down full time employment.

Maddening !

The latest audit craziness is that they claim they have proof that I am entitled to retirement / pension benefits, and that I’m defrauding them by claiming on the forms I completed on April 15th that I’m not entitled to any such benefits.

For today’s audit exercise, I had to prepare a list of all my employers for the last 43 years (many of which were temporary services / consulting gigs that I no longer recall as I was reporting to their clients every day and not the agencies – the agencies were being used as billing / tax management services vs. running the billing myself as a 1099 consultant). It’s been a long day spent racking my brain trying to remember everyone while also being civil and inviting The Hartford to just tell me who may owe me pension / retirement benefits !

On top of all of that, I got Katie into the groomer for her monthly bath and nail trim, only to have the groomer question her weight.

Sadly, Sanchia was right. I got home and weighed her tonight, and she’s only 9 lbs. That means that, despite the healthy appetite and normal litter box output, the outlook isn’t good for those lumps I’ve been monitoring while the vet still won’t accept pets into their clinic with their parents. If she has to be put down, I’m not letting it happen without me at her side.

So, we’re at a stalemate for knowing what’s going on with her health. Herself still seems happy and well, but this pandemic depriving us of her routine veterinary care is getting really old. Talked to the vet 2 weeks back to see if the easing of dining restrictions, etc., by the county board of health meant that they would allow me into the clinic with her, and the answer is a frustrating “no”.

So, I fed her extra chicken tonight (she always gets a treat after the stress of a car ride), and I’m going to stop keeping her on a restricted diet (the vet wanted her at a maximum of 11 pounds), and we’ll see if giving her more canned food helps to get her back up to her normal weight.

As you can see from tonight’s picture, she’s still demanding pets and giving me the hairy eyeball if I stop petting her before she’s ready.

Meanwhile, we’ll see if I can possess myself of enough patience to get HP back on the phone to have them figure out why my new printer went offline, and get it working again. I need to scan the audit documents and get them over to my lawyer, and I really didn’t need any of this extra stress.