Quail Hollow Moonlit Walk

A scorpion in the wild, highlighted at night by ultraviolet light.

I’ve written before about accessible open spaces or nature preserves that accommodate a variety of ability levels. In my post, “Zooming for your Passions” I discussed the fact that I find a huge gap between what able-bodied people feel is doable for handicapped folks, without any clear idea of the mix of abilities hiding their handicaps and trying to pass for normal as they go through life.

Last night’s moonrise walk during the full “Buck” moon was a perfect example of an opportunity to be out and about, vs. the ability to do so safely, without needing to bother anyone else for help, or end the evening with the EMT’s being called because I way over estimated my abilities, and could not hide in plain sight.

In a prior case, I had previously invited a 79 year old friend and neighbor to go for a moonrise “walk” with me on June 25th, in the foothills above San Jose, CA, and once we got there, the preserve was anything but practical for the lung-challenged walker. So, I didn’t invite her to go with me to last nights’ walk as I didn’t want to disappoint her twice in a row for getting in an interesting.

In the original invitation, there were a number of major issues: First – almost sheer up and downs, suitable only for billy goats and sheep for abilities levels.

Secondly – the trails were 1-way only trails, so anyone going on a walk had to commit to completing whatever loop they were on, as there was no simply turning around and returning the way you’d come.

👀

Note the fine print on the bottom left – “One-way trail map”

Now, I’m as game as the next person to do something foolishly stupid, but years of trying to make healthy efforts while hiding in plain sight have taught me to not be an idiot. So, I can only drive to the parking lot of this particular preserve and meander along the top of the ridgeline of that particular area as even the gentlest incline is too much for me to risk, now that I have a better understanding of the terrain. But, I went with a neighbor, so we sat around and sucked it up and we still had a good time despite very little actual walking…

Sunset, looking toward SF Bay, 25-JUN-21


Overlook at Sunset, from the San Jose foothills
Moonrise !

While I could read the maps to numerically understand the potential gain or heights I would be risking during my walk in June, it just doesn’t translate to my numerically-challenged, dyslexic brain.

1,000 feet…

1,600 feet…

1,800 feet… it’s all just so much gobbeldy-gook to my brain, as there might be flat walking areas along the ridgeline, and I won’t know until I get to the preserve and see for myself.

For instance, on the map for the Sierra Vista Open Space preserve trails, there are numbers for height or incline shown in terms of waves:

So, in preparing for last night’s second attempt at a moonlight stroll, my expectations were pretty low.

If you look at last night’s map of Quail Hollow, about an hour’s drive away in Felton, CA, there are waves indicating height everywhere, but the numbers I can see – 656 feet, 492 feet – are few and far between. So, my estimate was that the walking path may be half the height of the Sierra Vista Open Space Preserve, yet this area is in the Santa Cruz MOUNTAINS… so, one would think this would be a much rougher terrain for a handicapped person by the name of the location alone.

However, listening to our docent (walk host / safety leader), the actual height or incline gain would be only ~150 feet. A number mentioned nowhere on the preserve map. 👀

There are trail experts to whom height vs. distance numbers = calculable areas for gain or elevation / steepness in terms of grading a hike or walk. They can do the calculations in their sleep.

Since most novice hikers have zero ideas about how to calculate elevation gain over distance,

Part 1 – how to grade a hike’s difficulty
Hike difficulty calculations, part 2

and most descriptions or maps are inconsistent in terms of what data is shared for grading the trails for true accessibility for all levels of ability, the visitor is usually going to want to check trail descriptions, see trail photos and decide for themselves if the trail accessibility is overstated or understated in terms of terrain difficulty… IMHO, most people aren’t going to know how to do the calculations to estimate height gained or lost during a walk, and, even if they are able to do the math, can’t translate those numbers into reliable, factual, spatial relations data in their own head without actually walking the trail.

(Time to stop and catch your breath)

I am pleased to say that I was able to keep up with last night’s walking group, despite a 150 foot elevation gain and loss over the period of a mile – but only because we kept stopping to beat the leaf fall and underbrush for scorpions and centipedes. 👀

(Another version of last night’s trail map, with no indication of heights or elevations at all)

So, we left the Park Office (the old ranch house) where a wedding was taking place, walked North along the Italian Trail, along the Upper Meadow, then around through the Lower Chaparral and back to the Park Office.

There were about 40 of us, including parents with kids, and we heard all about the Italian Brothers who’d squatted on the land, to the point of building cabins, and which the original homesteaders tolerated (probably because they often traded for their labor on the ranch).

We heard owls, flushed out something small in the undergrowth (probably quail or partridges), and I managed to keep up and have fun despite the misty dampness, the dry trail sand being kicked up, and my pine and redwood tree allergies trying to clog up my breathing. Most important, though… we were able to pick up a few scorpions hiding in the underbrush, which our docent flushed out with his ultraviolet flash light (gotta get me one of those!). The picture at the top of the blog is a much more reasonable quality image than the blue speck I was able to get with my camera. But, here’s the grouping from last night’s fb post for anyone who cares to see my actual efforts…


Meanwhile, I tell you all that to tell you this:

I looked at my sand-covered, steel-toed boots this morning, and they’d gotten another good workout for breaking-in those ridiculously heavy boots without any wear and tear sores on my feet. Yes !

(Regarding my proper gear obsession – Living in fire and earthquake country, there were only ~17 firefighters / emergency personnel to come save us decrepit 55+ residents in the event of a natural disaster when I first moved here to the old folks Summer Camp 5 years back. Now that the area residents have grown to almost 250,000 more people – and the police and firefighter staff have not been increased – there is even less likelihood we’ll be a priority on the first responders list, so it pays to be prepared to help yourself and your neighbors).

Anyway, I tell you all that to tell you this. You *can* do it ! You can keep trying to stay fit and independent despite what the breathing numbers may say in your PFT (Pulmonary Function Test) reports.

I may be down to only ~16% of normal lung function, but you have to keep trying to help yourself be the best you can be. Besides sitting around waiting to die, what else have you got to do with you time? Might as well have some fun, and enjoy the world in all its beauty, if that’s what makes you happy.

Plus, you never know what you may see ! I still have the goal to take photos like these hobbyists, but until that talent magically appears, I’m going to share other people’s better photos of similar adventures…

The milky way over Arcadia National Park
Strawberry Moonrise – Portland, Maine
Another moonrise over my beautiful Atlantic ocean…

Tomorrow is another day… let’s see if I have enough energy to get up at 5am to get ready for a birding walk an hour’s drive away in Watsonville… Must keep finding reasons to push myself to get out of bed and ignore my pain and failing health. Life is too short to sit around waiting for the end to hurry up and get here.

And, while the spirit was willing, the body quit.
Maybe next time…

7 Ponds Blog

Heard from my EOL Doula today with an interesting article she’d come across the she thought might apply to me, and she was right. I found it very interesting, especially this part:

“In 2016, Canada made medically assisted death legal. And in 2021, they passed another bill to broaden access to allow people with a serious medical condition to apply, even if their death is not considered imminent. This is different from most legislation in the United States in which one must have a terminal condition with six months or fewer left to live to be eligible.”

This change in Canada’s euthanasia conversation and laws gives me hope that I won’t have needless suffering at the end of my life, should America grow up and separate the religious dogma against suicide from its euthanasia / quality of life concepts, conversations and laws.

Sadly, my Cousin T has been in an incredible amount of pain, to the point where she’s had multiple surgeries this year, playing whack-a-mole with her symptoms, trying to get her some relief. The worst part? She had a bone spur on her cervical collar / spine, probably the source causing loss of control of her legs, forcing multiple concussions and injuries over the last few years.

Now, I clarify they “believe” this bone spur is also causing her incontinence (previously fixed in childhood and re-operated on in May), but because of the whack-a-mole approach to her care, it’s anyone’s guess as to whether or not this will be the treatment that sticks and fixes her major aggravations.

In Cousin T’s case, she went in for what she thought was a reasonable outpatient procedure, where they would do a simple operation on her spine (simple?!! What where they thinking?!!). Anyway, I tell you that to tell you this:

The surgery left her without any practical use of her arms and hands for 3-6 months, AND they denied her rehab support, saying that – as a low income SSI (Supplemental Security Income) recipient – she could go to a nursing home / board and care home, but could NOT go to rehab.

So, Cousin T is stuck at home, this is what her spine looks like:

And she’s NOT entitled to necessary and practical rehab care while they left her helpless to help herself while recovering at home. First, the drain didn’t work, necessitating another day’s hospital stay and second immediate surgery.

Next, she developed an abscess at the surgery site (DOH !) that they are “monitoring” through home health / visiting nurse services.

Now, this is the same Cousin who needs to have her leg amputated because she broke her ankle in 2009, and 21 surgeries later, the leg just won’t stay healthy and uninfected. Cousin T won’t agree to the amputation, and she’s on incredible opioids and CBD items plus pain management services to try and control her pain while ensuring she’s not abusing her drugs…

It’s a no-win scenario, and when you add in the spine surgery to try and mitigate her failing body, there is no pain-free, practical solution that will give my infection-prone Cousin the quality of life she is seeking. And, should she fall prey to addiction or suicidal thoughts because of the unrelenting pain without sufficient paint relief, our ableist society will blame her for her failing body, poor medical choices, unsuccessful outcomes, and will call her a deadbeat for no longer being able to work.

At any rate, I told you all that to underscore that euthanasia needs to remain a viable alternative for people who want to opt in.

Here’s the link that my EOL Doula sent:

Rational Suicide

I hope this blog sparks additional conversation about why access to successful methods of euthanasia may be the only rational choice for folks otherwise trapped in their bodies and constrained by financial and emotional issues that current Death With Dignity fail to address.

Frustration continues

Good evening. Met with the pulmonologist via video call today, and it was pointless. He continues to say to send him the reports from the Ring for ox sat data, but since he’s not ordering sleep studies or otherwise reacting to the data, it’s frustrating and pointless, in my humble opinion.

Nothing like watching an oncoming train wreck and being powerless to change its course.

Really worried about losing brain function to this disease due to oxygen saturation deprivation, but can’t get a second opinion via the palliative care team as they still haven’t acted on my May 3rd request for enrollment in their program (there’s a long waiting list to get in, and I have no idea what their capacity is, or what average wait times may be). So frustrating !

Still no resumption of my Better Breathers Club sessions a year and a half after they stopped all meetings, and I don’t think the hospital is going to let the club resume meetings any time soon – especially since the county is now back to mandating / strongly recommending masks for all indoor activities given the rise of Delta variant corona virus cases in the state.

I’m not expecting to live forever, but I would like to avoid oxygen deprivation issues while we all concentrate on the coronavirus to the detriment of other, more practical, concerns. Life goes on, and if I can’t qualify for euthanasia yet, it would help my peace of mind a lot to know I wasn’t doing damage to my brain that might disqualify my ability to opt for it in the future.

So frustrating to not have answers or an action plan to preserve my quality of life !

Otherwise, same crap different day.

Staying busy with the garden and trying to clean up my messy house and yard in preparation of PG&E’s replacement of our gas and electric utilities over the next year and a half (oh, joy! Construction noise).

Started building a third raised bed dry stacked pavers tiered planting bed to split up my irises into two locations so that they will have more room to spread their roots. All the busy work in the world, though, will not keep my brain from wondering if my shorter attention span and faster temper is a sign of brain degradation from low oxygen saturation periods, and if brain damage will stop me being rational enough to pass tests to certify that I’m in my right mind to opt for euthanasia when the time comes…

To paraphrase Richard Dreyfus’s character, Ken, from the brilliant film, “Whose Life Is It, Anyway?”:

“The only thing I have left is my consciousness and I don’t want that paralysed as well.”

I went to see Black Widow with a friend last night, and in the middle of an otherwise enjoyable evening, I’m gasping in pain and twisting uncomfortably in my seat as my diabetic neuropathy flares and my feet are on fire. Despite the topical. Despite wearing sneakers two sizes too large to protect my crazily sensitive toes…

I am already worried about my other friend, having enough funds left to care for herself as her dementia progresses, without worrying that the current pandemic restrictions are actively eliminating my freedom of choice in the future as my ability to control my own body and its response to pain.

No answers here, but I don’t want to be trapped in my body enduring personal care indignities like this trapped soul…

SP02 Measurement Success

I’ve purchased the Wellue SP02 FDA-approved continuous oxygen saturation meter.

While it’s anything but continuous, only able to record for up to 10 hours at a time, it’s certainly better than anything else I’ve seen or used to give me actionable data. Having to recharge every 10 hours is pathetic, but I love the data I’m getting access to for sharing with my doctor, feeling my best with “breathe!” reminders when my ox sat numbers drop below 92% and my thumb vibrates.

Excellent.

This weekend with the Wellue was world’s better than two weeks ago with the fitbit Charge 4 that didn’t do even the basic data capture for 3 days, never mind providing high and low graphs.

The following my data from the first 3 days of use, and I have to say that I’m very impressed.

So much more helpful than just this after 3 days and nights of wearing the fitbit Charge 4:

Got to say that Wellue wins this hands down, even if the stupid ring makes me feel like King Tut or some crazy potentate, it’s so bulky, LOL.

Still loving my Fitbit Alta, as I wrote about in 2017. It doesn’t give me SP02 measurements, but does a great job with other helpful fitness stats. Coach fittie is still my wellness first love.

Early Morning

Good morning. Happy Sunday. The first photo reminds me of glorious sunrises in Maine, so I had to share. There are times I miss my New England home desperately, and pictures help with the homesickness.

In the second photo, you get another nostalgia post about Summers spent on Cape Cod, MA, and Seabrooke, NH, when the air would be slightly moist and chilly, the clouds hadn’t yet burned off to welcome the hot, hot Summer sun, and the lace curtains were all the illusion of privacy you had between beach shacks built 10 feet apart from each other. That’s what this image of morning glories outside my bedroom window brings to me.

Families saved up their pennies to afford 2 weeks at the beach, and there were Grandmas and Grandpas, Moms and Dads, kids, cousins and Aunts and Uncles all crammed under one roof, rotating beds and company for a few days as everybody took a break from their routine to share the beach and renew family ties with the main core that had rented the house to share.

Parents rotated in and out, getting a 2 week break from their kids, and extended family members got to treat everyone to nights at the carnival playing skee ball or watching the fireworks, winning stuffed toys playing darts, or sitting around the BBQ by the pool area, making s’mores for the kids to enjoy as they dried off from their last swim before bedtime.

I may live in a Summer Camp for old people, but the feeling living here brings me is right back to treasured memories of my childhood, where adventure lived right around the corner or down the block and everyone was happy to make new friends and have fun.

proselytizing

I took some friends out to lunch yesterday. I was running about 15 minutes late because I had a back spasm in the shower and could not straighten up.

Normally, I do my stretches in bed late at night, during the night when pain wakes me, and before I get up to start my day. I often spend an hour or two hunched over every morning, trying to bring ease of movement back to my stiff body. I’ve had right side pain for a couple of years, dating back to my onset of liver disease. I also have arthritis in my spine, dating back to when I was thrown from a horse in 1980.

Anyway, I tell you all that to tell you this: pain frustrates and enrages me. Neither emotion is healthy or productive as a type of problem solving response, but anger with my body’s failings has been my go to emotion for 60 years, so I presume I’m as good as I’m going to get in terms of anger management.

(Kind of what my shower gyrations looked like to unkink my back)

Being frantic in the shower, trying not to fall while doing stretches to unkink my back, and racing the clock, wondering if I’m going to have to give in and call 9-1-1 if I can’t gain control of my back and legs long enough to lift my leg enough to get out of the shower and actually move, I work to turn my body like a pretzel, trying to unlock my lower back. Needless to say, my stretches solve the problem enough to allow me to move, but now I’m really racing the clock to get out of the shower, dressed, and into the front seat of my car. Testing my oxygen saturation levels before driving to my appointment, I’m safe to be on the road but am again angered at being left to my own devices in dealing with competing quality of life issues as I struggle to hide in plain sight and pass for normal.

So, we’re finally at lunch and we’re talking finances and pain and quality of life. We’re talking about how to afford to keep living while my breathing gets worse and we talk about affordability and my choice to live near public transportation, as moving to the boonies like Gustine or Sacramento would only solve my financial problems short term, and that I’d be screwed – royally – if I lived in the boonies without the ability to drive anymore.

From there, the conversation turns to euthanasia and my engaging an end-of-life doula to help figure out how to comply with the regulations to limit my suffering.

THEN the conversations take a really weird turn.

If I tell you I don’t know what comes next, and I don’t believe in an afterlife guarantee, why in the world would you start lecturing me about my choices having afterlife repercussions because I didn’t see in any redeeming value in needless suffering?!?!

So, my male friend and I are discussing Mah Jongg and when we can get together to play / for me to teach him the basics (there’s LOTS to memorize, before one even starts to understand the game and develop their own strategies), and his roommate is telling me what comfort her faith brings her as she is busy proselytizing.

I was raised in a Catholic household.

My family includes Protestants, Methodists, Jews and Buddhists. So, if I tell you I haven’t found any value in the various religious teachings, and that I’m an agnostic – please believe me !

I realize that this friend is very convinced that she has all the answers. More power to her. I, on the other hand, don’t mind if you believe and have faith – just don’t demand that I comply with your version of right and wrong when it is only my well-being involved.

The part that was the most maddening? Her dismissal of my very real suffering in championing her belief that I “might” not make the cut into her guaranteed afterlife because I choose to jump the line vs. waiting my turn.

Seriously?

I tell you I am agnostic, that I don’t believe anyone has the certain knowledge of what happens next. I tell you that I am not depressed, but I am in real pain which is impacting my quality of life. I tell you that I don’t believe in an all knowing parent-like figure who only wants the best for me…

…and yet you want me to check my brain at the door, suffer for however many more years (I had my first surgery at 6 months, so it’s been 60 years of pain and struggle at this point), and trust your judgement over my own…

Frankly, I’d worry more about my own mental health if I trusted another’s opinion over my own. I have the experience of living trapped in this body. I have years and years of experience in trying to overcome my own frustration, anger and suffering. But, you want me to dismiss my own reality and pin my hopes on some sky daddy coming to relieve my suffering, when he’s ready, because only he knows when I have suffered. Enough. 🙄

I wish I could have had the eloquence to highlight her insulting persistence yesterday that she knew best to get her to stop. But, the brown cardboard scapular around her neck kept distracting me from the true point of the conversation – the faithful vs. the agnostic who has no preconceived notions of entitledness or guarantees about their place in some unknown afterlife.

So, we let the conversation die with frustration on both sides.

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…