** Warning ** Adult Content

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.

Having now tried to get through to my endocrinologist the horrific side effects of incontinence due to the disease AND the medications prescribed to treat it, I’m looking at the end of life palliative care team that I hope to build with the help of the doula in the hope I can find a more realistic endocrinologist.

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.

Humiliating.

Frustrating.

Demoralizing.

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.


People Suck

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.

Even Superheroes Dread Tax Season

I was looking for an image to head this blog, and had to laugh at this posting from 2017 where the author talks about the difficulties most Superheroes have in filing their taxes since they have to hide the expenses of the their alter egos:

https://comicbook.com/news/five-superheroes-who-dread-filing-their-taxes/#5

Needless to say, I’m STILL running behind on getting my taxes caught up, and I’m going to miss another deadline. I got the 2016 taxes uploaded to the accountant’s dropbox tool, but there was only 1 file folder, 2017, and no file folders for the additional years. So, with the 21st rapidly approaching and an IRS notice that they are charging me with being $51k in arrears, I’m going to miss another deadline and will continue to work on things over the weekend.

Loved the fact that they Feds just granted an extension to the middle of May for 2020’s taxes, but since I’m so behind on getting the prior years done, it makes little difference.

If I end up being stuck paying the $51k, my thought is to sell my home (that’s one way to ensure that have to get rid of my extra stuff), and then move up to Sunnyvale into the indigent housing ($1,420 for the smallest studio at list pricing, and they allow pets).

While I hope that won’t be my choice, I’ll be ok with having to move into housing in the very walkable area of Silicon Valley, and it will be an affordable rent to get me through the end of my days. Should I live long enough to have lost my supplemental salary income in 2027, I can then approach them about reducing my cost of rent, if necessary, so that I can still afford to live.

Bonus round? I’ll be back in my Silicon Valley neighborhood, near my friends, in a very walkable neighborhood with a movie theatre, a Target, various restaurants only 2 streets over, and CalTrains within 2 blocks of where I will hope to live. It really helps to have a Plan B when trying to figure out how to survive in our crazy, expensive, high cost region.

As for the tax guy… I’m just going to have to hope that he or she doesn’t put a lien on my monthly income until my taxes are done. It’s aggravating enough that they have prevented me from receiving my stimulus checks until I get my taxes done and can see if I can take that money as a credit.

Death with Dignity

So, along with everything else, I’m thinking about my euthanasia paperwork. Not depressed or suicidal, but being practical about what’s involved in ensuring that I have control over the end of my life and avoid stress and suffering when the time comes.

Had yet another difficult conversation with my endocrinologist as she wants me on injectable insulin (so NOT happening, and that determination was made before I watched the film “Billie Holiday vs The United States” with its graphic scenes of people injecting themselves with heroin). Nope. Nope, nope, nope. Absolutely not going there !

So, she again sat across from me covered in PPE (personal protective equipment) from head to toe, and asked – AGAIN – if I had talked to my pulmonologist about my certainty that the weight I carried served to keep me healthy.

I’ve repeated the story of my Mom losing 35 pounds in 9 days during one of her final exacerbations, and I’ve reminded her that I moved here and put on 40 pounds and have not been hospitalized since 1985, so I think I have some knowledge and skin in the game vs. the anti-weight bias. Frankly, I don’t care what anyone else has to say, as it’s a non-negotiable topic in my view.

But, nope. For some people, fat people will be FAT first and PEOPLE second, if ever. Yes, my BMI indicates that I’m 39.x pounds over a healthy weight, and therefore obese.

However, if I tell you that I was hospitalized constantly when I weighed less than 160 pounds at 5’5”, and that my higher weight actually helped to reduce the number of hospitalizations, will that change your point of view? No? Why? Weight bias. I’ve lost 20+ pounds that I’m NOT happy to have lost due to the Jardiance and related side effects, and the incontinence issues are driving me insane.

Anyway, after dealing with the endocroniologist last week, I was more determined than ever to figure out next steps on the end of life paperwork as having yet another doctor focused on life at any cost is not a goal I have for myself. So, I updated my notes from the various Death with Dignity resources, clipped a bunch of doulas that seemed like they might work for me, and chose one at random based on her location, bio and photo.

My introductory email was very straightforward:

Anyway, the conversation with the End of Life Doula was incredible, and I don’t say that lightly. I’m not a fan of talking to folks on the phone in general, but this went really easily. She was outgoing, talkative, already focused on end of life rights for alzheimers and dementia patients as she was working with a lawyer trying to draft that type of language into an Advanced Healthcare Directive.

So, I was very pleased as we seemed to be an instant hit, and I managed to talk to a complete stranger for over an hour and a half as we jumped back and forth among topics, got interrupted by phone calls on both sides of the conversation and got to know each other a bit.

We’ll have another conversation on the 30th, and see if she’s been able to figure out a draft services agreement for how we’ll work together (since I don’t seem to need much 1:1 hands on services at present, and am seeking more advice / expertise to find doctors friendly to the concept of euthanasia, and start to work with them to nail down my health and quality of life in their eyes), while working with the doula as a partner so that the necessary paperwork can be complete.

The rules are pretty specific that I must be within 6 months of death (that’s going to be a problem in my present state of health, but that’s a worry for another day as I’m not yet frustrated or tired enough to feel the need to pull the plug immediately). I also have to obtain two (2) medical experts to testify that my quality of life is shot, as well as have one (1) psychiatric evaluation that my concerns are real and not as a result of a suicidal ideation.

Since the doula agrees that I shouldn’t have to justify what I find to be intolerable pain, nor justify what I find to be an unsupportable way to live – at the mercy of others, and dealing with incontinence – we’ll see what’s possible over the next year or two as I work to solidify my beliefs and carry them to certification.

We talked about my earlier efforts to figure out what I needed in 2015 since I’m not ill enough yet for hospice and am trying to remain independent without someone in my house “helping” me, and she was very helpful to offer comments on the hospice that I’d contacted to inform me that not all hospice organizations were willing or supportive of end of life choice.

We talked about a palliative care team, and my pulmonologist’s feeling that I’m not yet ready for that level of service, even though I am frustrated with the endocrinologist’s focus on health at any cost regarding my diabetes, and don’t want QUANTITY of life to be the focus when I’m all about QUALITY of life. The differences are small, but critical in my eyes for managing my palliative care needs and juggling all of my medical needs and comorbidities.

So, for now, it looks like an initial meeting of the minds in terms of finding what I hoped to find in my search for a doula. I won’t ask anyone reading this to wish me luck – especially if it goes against their own faith or belief systems. I mostly keep this blog to purge the crap from between my ears, as well as document my choices and what I’ve gone through and decided, so that I also have a paper trail for the psychiatrist – if necessary – when they want to evaluate my reasoning and whether or not this is a suicidal whim or a long-held belief.

Another Drama Drama

Connection Not Found

Along with all the other orders I’m getting from Baby Sis and Cousin T, I’m getting pushback from both of them regarding my choice to play on Ancestry.com

FYI, a cousin (second cousin) already did our family connections on our maternal relatives, so it’s not like I’m doing anything particularly new in terms of genealogy tracing but they have both come unglued, as if I’m going to lead the authorities directly to their door for anything untoward they may have ever done in their lives. As if ! 👀

What’s crazy is how the program works to allow one to connect paper documents. The links and data are already out there in the public, as the program suggests to me which records may be relevant based on its own algorithms and our parents and grandparents publicly available data. Nothing I do or don’t do changes that pre-existing, publicly available data.

But, whatever. Each will be listed “Female (surname)” with the photos annotated above. Nothing else. No date of birth, addresses, whatever. No reference to offspring or spouses. That’s not going to stop Ancestry from suggesting matches and trying to get me to update the blank placeholders with actual records.

And, it’s not going to stop my cousin’s records from listing them. Never mind anyone else in the family who chooses to create their own family tree.