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.
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…
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.
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…
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.
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.
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.
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:
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.
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
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.
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.
Due to the timing of the pandemic restrictions on normal routines and best medical care practices, I haven’t had my PFT tests since August 2019, when I was dealing with breathing issues after my car accident. Luckily, my breathing has pretty steady for me, but as it’s been more than 18 months, I’m very interested to learn whether or not there have been any changes.
While I was hoping to get the breathing test done on my March 31st appointment, he decided to do a lung and heart ultrasound, as well as order a separate CT scan, before scheduling me for the desired breathing test in mid May.
When I talk about knowing my triggers, and understanding my lung capacity over time / seasonal variations, this is when this part of the doctor’s PFT (Pulmonary Function Test) helps me to understand when I’m at my best or worst each year / each season. Going 18 months without knowing what’s working or not, especially when my oxygen saturation rates keep dropping down into the 80’s while exercising, is a concern for lack of statistical data about what’s really happening.
In my case, when doing a 3-year look back, it’s clear that I am at my best from April or May through October each year, and I credit my high October numbers to the fact that it’s still very warm where I live, and I will have had the extra exercise I get all Summer (during the warm weather) to help my lungs function at their best despite their poor performance overall.
Additionally, I can see that the Winter / rainy weather which typically kicks in during November and can run through early March is also visible in my lung performance because I’m spending more time indoors, hiding from the wet and cold weather, and I’m getting less exercise every day.
So, for anyone new to what it means to have COPD, it’s important you get to know your numbers.
Don’t hesitate to talk to your pulmonologist or respiratory therapist about quarterly or semi-annual PFT tests, and run comparative assessments about when you feel your best vs. when the test results say you are doing well. Since one of the tests they give you includes a lung function test without using an inhaler as well as after using an inhaler, it’s an important tolerance test to let you know if the $400 or $500 a month medication is worth the improvement in your breathing you may experience short-term, as well as the complications for causing osteoporosis, cataracts, etc., etc., etc. So much goes into every decision about what medications to use, what medications to skip, and what alternate health / wellness treatments to try, that it’s important that we keep an open mind while also being open to alternative treatments.
It’s easy to ignore our daily efforts to continue to improve our own levels of wellness, but it’s important for your overall quality of life that you participate in your care options and in efforts to make yourself feel your best despite your diagnosis.
As for me? I’m working on a cruise for 2021 (tight budget until it’s all paid for), and I’m plugging in that trip for next January to some place warm and sunny to help me keep my swampy lungs dried out, and to give me some excitement during the worst part of my breathing year.
I realize my choice to travel before anything else isn’t for everyone, but you can do more if you concentrate your spoons of energy on how to get the most out of your life despite our overall challenging quality of life diagnosis.
I hope this information helps anyone reading this who may have breathing issues, or being a caregiver for someone with breathing issues, understand the importance of regular PFT testing, as well as the importance of knowing your specific results over time. It should help you to understand what is and is not working in your efforts to feel your best every day despite any weather or seasonal challenges that may act as exacerbation triggers for your version of the disease.
This is a typical result I achieve when running my PFT tests.
When I talk about my lung capacity being 26 or 27 percent, that’s highlighted in blue ink on the image above. The green highlighted area shows the normal range expected if one is healthy. The yellow highlighted area shows my actual measurements for liters of air processed during the 7 or 8 seconds noted when I’m inhaling or exhaling.
Remember – FVC = Forced Vital Capacity (what you can inhale) and FEV1 = Forced Expiratory Volume (when you exhale) over that same 7 or 8 seconds noted on the diagram.
As you can see, I can get in very little air, and I’me done at about 1-2 seconds for inhaling. Then, I can exhale for longer, but I’m pushing myself to get the air out (forced expiration). In general, I breathe very shallowly, and need to concentrate to take big inhales and big exhales when I’m trying to get my oxygen saturations up as the numbers fall into the 80% saturation rate while exercising.
Hopefully, this annotated image helps you to understand your own test results if your doctor runs these tests and gives you copies. As Russ Winwood of www.COPDathlete.com has shown, knowledge is power, and you should get these tests run during the 4 seasons of the year over time so that you get a feel for when you are at your best or worst for breathing abilities.
Finally, when you look at the rating I’m given (under the green column), you can see I get a “D” or “Barely Passing” grade. (One of the tests I took when I was 58 told me I had the lungs of an 80 year old – ha, ha – but the important point is that I’m staying stable for the last couple of years, and I continue to push myself to try and maintain this level of measurable functionality).
For those new to COPD who may be reading this to try and educate yourself about other folks experiences, tricks and tips for wellness, I hope this data helps you build your own set of helpful, relevant, factual markers.
Managed to get to the radiology department by 7am yesterday morning, and was the first person of the day for my CT scan.
Sadly, while the tech was nice enough, he was in a rush to make a staff meeting, and kept trying to help me move faster on and off the machine table vs. leaving me to do it at my own pace so that I would not tweak my right side.
While I am still hovering around 177 or so vs. my preferred 200 lbs, anyone who looks at me still sees an obese woman and presumes that I am out of shape / unable to help myself move around. I’m pretty limber, which my pot bellied appearance belies, but people believe what they want vs. listening to what you’re saying.
I had to tell the tech – twice ! – to let me lay back at my own pace as I was trying to protect my right side from torso muscle spasms. He kept trying to shove the pillow under my head to ensure that I could breathe when my arms were raised over my head, and that was making my right side crazy.
When it came time to get off the danged table, he tried to grab the sheet under me to lift me up (very painful), while not understanding that I was hooking my feet under the side of the table to give me stability to use my leg muscles to sit up without tweaking those right side muscles.
We spent more time with me stopping him than it took for me to do it myself. As my business partner, Whimzzie, knows very well – Don’t Help Me !
At any rate, I got home to find that a new paralegal had (finally) answered my email about the status of my car accident case that the lawyer keeps on dropping. Of course, she didn’t actually read the file or any of the receipts and such that I’d sent over in November, so she wanted me to send it all. Again.
It was great timing, though, as I was already aggravated from the back pain and that was great motivation to get her what she needed in the hope that a demand for my unreimbursed expenses and a settlement proposal will be finished and finally sent out by the end of this week.
I don’t like to think of myself as money grubbing, but I’ll be glad when all of this is done with, and I can hopefully get the $2k I’m out of pocket to put against my car loan, or home repairs, or mortgage payments.
Whatever the money goes toward, I’ll be glad to get the case behind me as all this paperwork is not worth the aggravation – especially when the pain is aggravating enough.
And, you know The Hartford folks will try and claw back funds from any money that I eventually receive from the Gekko insurance company. I, meanwhile, spent today’s payday funds on new swimsuits for the Summer / January’s cruise, and made sure that not all of my budget went for sensible choices, LOL.
As part of dealing with the flare of back pain, incontinence, and swampy lungs I’ve been dealing with for the past couple of weeks, I’ve been dragging my feet about asking my pulmonologist about a referral to the palliative care team as the last time I requested it (about a year ago), he was very much against it.
I’ve been dealing with my pulmonologist with regard to managing my end of life / euthanasia wishes through a number of quick and dirty skirmishes over the years.
Let me make it clear – I am the worst patient out there. I’m opinionated. Stubborn. And there’s ton’s of things that I just won’t do or try even if they might alleviate my (whatever – there’s too many different situations going on) to make me a good patient.
That being said, though, I’ve been with this guy since 1992. We’ve survived the “You’re going to die if you don’t do exactly what I tell you to do” fight, and we’ve learned to laugh at my stubbornness as I’m still here 25 years after our last knock down drag out ” I am the doctor ! ” debate over my care choices.
Anyway, as I wrote in a different post, I had to have the doc process the necessary forms to continue my disability benefits, and we talked about the fact that I’m having a pain flare that’s impacting my quality of life to the point where I need to research new options and alternatives as the issues appear to involve my spine and neuropathy in my feet vs. it being centered on my heart and lungs.
While my doc has softened his views about euthanasia, he is still adamant that it’s not for me. As my End of Life Doula seems to believe, we’ve been together for almost 30 years at this point, and he doesn’t want me to go. I don’t think that’s the issue so much as his focus is on keeping me alive until medical science delivers new treatments that may work for me (what he said back in 2015, when I was asking about lung ablations and stem cell treatments).
Whatever the issue may be, though, I don’t want to lose him as a primary care physician as my most pressing issue is my ability to breathe.
Over the last couple of weeks, going to exercise class has been challenging as my oxygen saturation have been dropping quickly and crazily:
I’ve been in a lot of pain overnight. Lot of pain getting up and down from the toilet (man, who knew that used so many torso muscles?). The lung pain has quit, but I am looking forward to getting the MRI at some point in May so that we can figure out if there’s anything specific going on with my spine and right side, or if it’s just more of the same old, same old.
Luckily, my ox sat rates are mostly staying in the 90’s and not falling as low as 83 / 84 while exercising, but I am very grateful that the doc has FINALLY approved my wish to try the palliative care team to get their assessment of what’s going on, and whether or not I’m being a jerk in refusing to go on injectable insulin.
Ultimately, though, I’ve decided I’m done with anything that doesn’t serve me, and pain is never going to be high on my list of things to deal with.
Let’s hope the palliative care team will accept me after the referral is received, and that they have some options for helping me feel better despite my challenges.
Being disabled, even if mine is largely invisible as I don’t use a wheelchair or a walker, I do have private conversations with many friends who are also injured or disabled, and their frustrations with trying to live their lives to the best of their ability.
This year, the long term disability / supplemental salary insurance company (which has changed from Aetna to The Hartford) threw me a curve ball during the audit by contacting me directly vs. going through my lawyer.
They know better, but they believe they are a law unto themselves and my mental health is something they are regularly attacking in an effort to get me to give up and go away.
In particular, I don’t have a lot of extra energy, so I rarely open the mail (bills) and try to deal with them once a month, when I get paid.
The bill I thought was for Medicare’s Supplemental Drug plan (which is auto paid online) was actually a request for proof of disability from The Hartford, which was sent on 3/1 and which was due 4/21. Since I didn’t even bother to open the mail until 4/9, I immediately had a minor hissy fit because I keep thinking Aetna is who I’m still dealing with, even though my employer has changed insurance companies. Yes, it’s my bad.
But, there is nothing guaranteed to make me see red faster than to deal with their games of bypassing the lawyers to come directly to me, hoping that I will miss deadlines and cause my ongoing claim to be denied. In particular, their oh-so-condescending verbiage on the letter just fans the flames of my frustration:
“If an APs and LTD Claimant Questionnaire form are not received in this office by 4/30/2021, we will assume that you do not wish to pursue your claim and your LTD benefits will be terminated accordingly.”
So, I had to chase the lawyer to let them know I was being contacted improperly, and to ask them to reach out and remind The Hartford that they are not to write me directly. Then, I began the long, aggravating process to answer all their infernal questions (Do you need help with finances? Who cleans your house? Do you need help with toileting? What can you no longer do that you used to do?).
Absolutely maddening ! and frustrating, as I try every day to ignore my breathing issues and related health challenges, and yet here I have to talk about it at least once a year, while confirming that I’m not a goldbrick faker, and that I’m not dead yet, so they need to keep paying me.
At any rate, one of my friends has been disabled since 1984 / 1985, and she was covered by a union contract which guaranteed her disability payments through age 72. My friend has an ostomy bag, surgery-induced Type 3 diabetes, and is a hospital frequent flier due to her ongoing disability issues related to PTSD from the treatments, as well as the daily pain she is in. However, she also goes through the same intrusive types of questions that aggravate the heck out of me, but the new twist is that she has been told that her union employer has changed insurance companies, and that she is no longer able to be covered until age 72, but now is only covered to age 65.
I find it funny that we cannot retire as workers until our age group reaches age 67, but the insurance company thinks it can get away with reducing benefits as of age 65.
Additionally, there is no question that she should be grandfathered in under the original union contract and retain her benefits until age 72, but they are going to war over that question in the hope she will give up and go away.
Imagine my surprise when I was researching ERISA laws today (the fiduciary legislation under which we all purchase or receive insurance coverage from our employers), and found that a Judge in Canada has finally decided enough is enough for trying to abuse their insureds receiving disability.
Yay ! A strike for the little guy !
It doesn’t yet help us here in America, but I’m hopeful that these aggravating battles of the forms from Insurance companies who are determined to treat us all as deadbeats will be reviewed and their heinous decisions repealed on review.
Luckily, in researching good faith and fair dealing in terms of insurance claims, it looks like the courts are waking up to the unfair and profitable tactics insurance companies are using to deny benefits:
Let’s hope my lawyers continue to win and my disability income continues until I pass away or until I reach age 67. Either way, it’s frightening to try and live when you don’t know how you will succeed financially for planning your day to day realities, and having my friend’s benefits be threatened under her wellness audit in another state, it gets scary for all of us.
Not to malign the folks that get their rocks off being “adult babies”, but having dealt with surgical repairs to my nether regions since childhood, I can assure you that incontinence is no laughing matter. Nope. Not even remotely sexy. 👀
So, having had my first urinary tract or bladder surgery at 5 years old, and being traumatized to the point of being tied down for days in the hospital because I removed (whatever) equipment or catheter post surgery because it hurt, I can assure you that I am no more likely to opt in for helplessness post surgery as an adult just because the loss of control bodily functions is back.
No one tells you that, in addition to talking your quality of life by making you feel like a junkie testing your blood sugar daily, or multiple times a day, the disease of diabetes may take your quality of life through neuropathy. In my case, the neuropathy that sets my feet on fire and keeps me in pain when trying to sleep has decided to attack my internal digestive tract nerves, adding to my daily joys by worsening my genetic weakness and gifting me with both urinary and fecal incontinence.
Absolutely not willing to have bladder or sphincter surgery as I age, as I still have nightmares over the original pre-surgery tests where they laid 5 year old me down on a table and filled me with liquid until I peed myself. In front of an audience. So not sexy. Never mind so not anything I would willingly endure again, even though I survived the tests the first time AND have the PTSD memories of the humiliation to prove that embarrassment won’t kill me. Even if the memories try their best to haunt me, and the daily incontinence worries steal my joy.
As the diabetes has apparently attacked the nerves for the rear door, too, it has become necessary to have multiple sets of clothing and either never leave the house each day until I’m sure I’m emptied out, or go without eating if I want to get anything done.
The pandemic and shuttering of many public restrooms has worsened my sense of anxiety in terms of leaving home, and I’m using fasting as a way to regain some illusion of control. Otherwise, I find myself looking for a convenient bush, driving like a maniac to make it home before I lose control, or, getting home only to lose control walking up the stairs into my home, or as I enter the bathroom.
So not anything I’m willing to explore to try and wrap my head around the realities of my incontinence as a fun fetish. It may be seen as a way to adjust to the realities of my failing quality of life, but I am not willing to go there. 👀
Incontinence is so not sexy. 👀
I am not a fan of the concept of “life at any price”. And, the worsening incontinence issues also cross yet another quality of life boundary for me.
While I can wear a catheter on the front end (itchy ! ouch !), as far as I’m aware, there is nothing similar for the back end.
Adult Diapers in the form of “Depends” abound, however, I cannot abide that scratchy material against my skin, nor do I want to deal with unnecessary bulk underneath my clothing.
Having watched the memes and verbal abuse of our Ex President 45 include the issues of whether or not he wears Depends, I know how brutal people can be in terms of verbally abusing each other over their vulnerabilities. Having my body speculated upon for whether or not I wear incontinence products is not high on my list, either. Especially when I keep the Stay Free folks in business already, trying to protect against a predictable failure of my body.
I spent last night with a friend who is grieving the loss of his significant other. It was very weird to be in a crowd of St. Patrick revelers, Irish folk tunes blasting, and trying to have a reasonable conversation about his challenges with grieving.
We went back and forth between her adult children’s treatment of him, and my turning the conversation to his Men’s Group, prior history of traveling with them, and trying to inspire him to reach out to them in his grief, and start to make plans to travel again since he’s gotten the coronavirus vaccine. Cost Rica, Alaska, Italy. He used to travel occasionally with his Men’s Group, and the adult children are idiots since they never gave a thought to how their Mom and her significant other were able to afford to go on exotic trips to China and Russia while they were growing up in their early 20’s. Their Mom was a receptionist her entire life, and that’s not normally a job that gives a woman, never mind a widow raising 3 children, a lot of spare cash.
At any rate, I was glad that I could be there for my friend, but saddened that his step-children (for lack of a better label for people he had a strained relationship with for over 30 years), could not treat him respectfully. Never mind the scrambling the surviving 2 adult children did before their Mom died to lock her out of her own finances and exclude both their Mom and her significant other from the necessary involvement in her own end of life issues.
People suck, but especially when they are chasing money and stuff as a family member is dying, or once that person has passed.
The ridiculous part of all of this?
The son of his significant other had been living in my friends own home for at least 15 years – not paying rent since sometime around the financial crash of 2008 / 2009 – but he thinks my friend is the deadbeat. As if !
The son was supposed to be moving into a new rental home as of March 5th, and only now told the significant other that he won’t be moving out for the next 60 days or so as he takes his own sweet time about moving into the new rental. Crazy, right?
The significant other was supposed to be left alone in his current home for 90 days following their Mom’s passing, so that he could grieve at his own pace. The son and daughter were supposed to leave him alone, but have done nothing but bother this man with repair people, with realtors, and with removing things from their Mother’s house – all without any consideration of the fact that the significant other had a life of his own, and that they are not honoring their Mother’s final wishes in their rush to grab the gold ring.
The most important fact, though, is the fact that we are living in the heart of Silicon Valley, and the significant other is a millionaire in his own right. No kids, no relatives. And these 2 idiots have always treated him poorly, completely missing the goldmine directly under their feet in their need to grab their Mom’s assets and ensure that he gets nothing from their life together. Their father died when they were in their teens or early 20’s, and somehow their Mother’s loving my friend has become a betrayal of their Father’s memory in the eyes of these adult children who never bothered to see their Mom as a person in her own right.
Money is not a tool to make people behave, unless you’re a sick mindset. But, I do get quite a chuckle over the fact that greedy jerks won’t get a penny when the time comes because of their inconsiderate, rude behavior. They are so busy trying to rush him out of their lives that they don’t see the truth of his upright worthiness and love for their mother.
Sometimes, people suck, and it’s good to admit that and move on. With every conversation I have with the significant other, I hope I am able to get him to see that and find a way to ignore that nasty piece of heartache and motivate him to rebuild his life in a happy way, despite not having his beloved at his side.