Things Tentatively On My To Do List

Even though here in NY, things are opening up gradually, until there is a vaccination available, I'm reluctant to head into NYC for anything. Even here in the 'burbs, even though masks are required to be worn in shared public spaces like grocery stores, people are complacent and selfish, and mask wearing compliance isn't what I'd deem even remotely close to 100%.

There are many shitty things to associate with the pandemic, and exposing the true nature of other humans has been, unfortunate and quite enlightening. I hate just about everyone.

Another shitty thing is our inability to make any real plans. Vacations seem almost impractical and absurd--yet, I am so exhausted, I need a break. Making doctor appointments seems out of the realm of possibility too. If I am forced to go, I could presumably DRIVE, but I've never driven to NYC, and usually take the train. I'd have to search out parking garages or on street parking, and hope for the best. 

That all being said, for my own notes, I am crafting this to do list of potential doctors I need to see, but at this point, it might be early 2021 before it happens:

1. Kidney Guy (regular follow up appointment & vaccinations)
2. Endocrinologist (establish as a new patient; and follow up U/S for thyroid nodules)
3. Hematologist (get to the bottom of my anemia)
4. Neuro Ophthalmologist (regular follow up appointment)

I have triaged everything else. I see Mt. Sinai is opening a new office at 331 Central Park Avenue in Scarsdale, so I might check in September to see if any of the names of the doctors is familiar to me so I might save myself a trip into Manhattan.

The rheumatologist I was seeing last year is being forced into retirement, and I'm less than enthused about starting with yet another rheumatologist, when it doesn't appear as if my joint and other pains are rheumatological in nature. 

As an aside, I did mention in my previous post about how I haven't had a therapist since September 2019. I did manage to do an effective Google search to find the practice where my previous therapist ended up. I called and left a voicemail last week, and have yet to receive a response. 

Four Months Later

Two weeks after my previous post, life as we all know it, changed. 

3/10 Maharajah's office started working remotely, and a week later, my office followed suit. I volunteered to work as part of a skeleton crew. I got a couple days into it when I received the first of what would be two emails informing me that a coworker (on another floor) tested positive for COVID19. The office closed down for two weeks, they had a sanitizing crew come in and I worked another couple of days before the second email came through saying another co-worker tested positive.

Fortunately, so far, no one else has come up positive, and I have been working all this time. At first it was 2 hours a day 3 days a week; then 4 hours a day 3 days a week, then 4 hours every day, staggering mornings and afternoons every other day.

By the beginning of April, my mom was alerted that COVID19 was in the nursing home; she knew it before the official notification came through, as everyone in her wing was dying of it. One by one, each person died, by the end of March, the woman in the next room over and then the person across the hall were taken to the hospital (to die), THEN mom's roommate. She was terrified, and yet our conversations were weirdly NORMAL.

When I spoke with her, I said that I hoped when she was sick in February, that I hoped it wsan't the flu, and we both doubted it was the flu. I hoped that she had some kind of immunity--despite the fact of the abundance of comorbidities she had which would make surviving it unlikely.

It's a blur. I don't remember if my last conversation was April 17th or the 24th. The staff at the nursing home were over-burdened as people were out sick or otherwise not showing up. There were two aides to care for, then, 63 residents. Despite calling the nurse's station and trying to get help so that someone could get mom's cell phone and bring it near her so I could talk to her, that never happened. There were no final goodbyes. My last goodbye was just what I'd call an ordinary goodbye. The last time I saw her was December. 

On top of the nursing home's negligence, the "hospice" came in precisely once, I am not even sure what they did as I wasn't the medical PoA, but they came in once, and from what I can tell as a spectator, they neglected her until she died.

We were told she'd die in 3 days, and she lived 11 days, 8 days beyond their prediction. For me, it was two weeks of radio silence. Mom was no longer alert and able to make or receive phone calls. Before they sedated her with morphine and ativan, she frantic and screaming for my father who died in 2008. She was terrified. And it takes a lot of fortitude for me to type this out without sobbing in anguish.

5/4 Mom died.

5/15 she was finally cremated.
6/7 We were rushed by my sister's church as well as mom's sister to bury mom's ashes, rather than wait until the end of the summer when it might be safer to do so, so then we'd be able to comfort one another and share in the burden of grief, and perhaps share a meal as a family. But no. I was robbed of that. 

On top of my anger about how mom was neglected by Shady Pines, then the hospice, I'm angry at my aunt for rushing things according to HER schedule. She could easily have had a memorial mass at her church, no one was stopping her from doing that. Instead, we were rushed to bury the remains. There were no hugs. There were no condolences. The whole thing has been more to bear. 

There is also this lingering suspicion of what awful things she told others about me, as I am now persona-non-grata with the extended family (on mom's mom's side), as I have only heard from one cousin from that side of the family--the rest have been silent. No card. Not even a text. They've all abandoned me how they surely must think I abandoned her--it doesn't matter if she abandoned me or was otherwise emotionally unavailable and verbally abusive to me.

From a medical and self-care standpoint, I have had to triage everything. All my doctors, or the ones I will call the important ones: internist, gyno, kidney guy, cardiologist, neuro ophthalmologist are all in NYC. And NYC was hit harder than where I live 40 minutes north of NYC. All my routine check ups and appointments have been postponed indefinitely until things even out. Even as I type this right now, it looks like NY has finally leveled off. But I won't feel comfortable about going into NYC for any appointments until a vaccine has been developed.

This is also a helluva time to be "flying without a net" without a therapist. I haven't found a new therapist since Kerry went onto greener pastures last September--it also doesn't help that our insurance plan this year sucks moose balls with it's $6200 deductible that had to be met before they will cover things at 80%, assuming I find providers that are "in-network." And with mom no longer being physically here, I wonder how much more work I need to do. I can't put my finger on it, but I still need more work to be done, though at this point it's "damage control," finding healthier conflict resolution skills and coping mechanisms.

Right now, I'm just left with a tremendous amount of cognitive dissonance regarding my mom: knowing how she abused me and my siblings (and dad, too); and knowing how she was abused too, and me wanting better for her than she was willing to fight for herself.

According to my notes, April 22 was the last menstrual cycle I had, right around when the calls to/from mom stopped. Coincidentally I've stopped menstruating. My mom died. Is this when I officially become/became an adult?
 

Three Months Later

Wow! Hard to believe it's been three whole months since my last post. Plenty going on, as usual.

In December I started seeing a chiropractor who was also a functional medicine doctor, and despite the fact I started seeing him primarily for active release therapy/technique, he spent the majority of my seven sessions (the initial consultation plus six sessions) bullying me and ranting about how I refuse to go gluten free and dairy free. Mind you--there was no rapport--how does he expect me to build up any trust in him as a health care provider if all he's going to do is rant about what I'm not doing--and of course, conveniently overlook all the things I did manage to alter. My suspicion is, that his primary focus seems to be a clientele who are high performance athlete. Let's just say, I'm NOT his target clientele. After six sessions of being bullied directly (as well as being subjected to his political rants), I decided this was not a good fit for me personally.

In December I also managed to see a new rheumatologist for yet another rheumatological screening--and he was quite thorough and was testing all kinds of things, even things my previous endocrinologist (the one who retired in December 2017) would test. 

I was really impressed with how thorough he was and how easy it was for us to build up a rapport. Only problem is when I saw him in January, I was informed the hospital is trying to get him to retire (he's only in his early 70s, and not ready yet). Looks like the hospital is trying to get an infusion of young blood, and aren't all that concerned with the patients this doctor treats. I have one more appointment with him (in April) and I hope to get some kind of conclusive diagnosis--my suspicion is Ehlers Danlos Syndrome--as I have a collection of seemingly unrelated issues, yet when I connect the dots, it brings me back to EDS.  I hope when I see him, he'll suggest I get genetic testing--and whether I get that done or not will hinge directly on how much the % insurance will cover, as Maharajah's plan changed this year and it is utter garbage--I'm pretty much hemorrhaging money this year with our high deductible.

Undaunted, I found another chiropractor for the active release therapy, and I have been getting treatments weekly. This will be the sixth week, and between this and a kenalog injection I had (right into my psoas bursa), I am walking better, able to dismount from a chair better, and climb stairs better--at least the lifting of the leg, but not the "push off" movement. I am allowing myself a total of 12 visits to get everything "dealt with." Doc Handy (as I'll call him herein) is great.

Doc Handy thinks I should set up a blog regarding my affinity for diet supplements--but I don't know where to start. I am not certified in anything, whether nutraceutical or nutrition related, I only know I am my own best case study and I know what works for me and my collection of issues.

My acupuncturist thinks I should set up a YouTube channel with affiliate links for the same topic--supplements.

And my rheumatologist thinks I could do this even without any type of professional certifications.

This is clearly something I want to do for a living, as it helps me, and a bunch of my friends have sought my advice, I dispensed my advice, and it has made impacts in their lives--now that's something truly lovely--fulfillment in helping others!

If anyone reading this has any suggestions regarding potential paths for me to take (online certification courses regarding supplementation, or a nutritionist certification course or something I have yet to articulate which will help me in this endeavor--please leave a comment. 

Short of this, I'm considering finding an ND (naturopathic doctor) locally (if they exist nearby), schedule a consult to see if they would be up to the task to be my internist, and or whether they can help me on my path to helping others. 

In the meantime, things at the Salt Mine continue to change and erode, and never, of course, in a good way. Last Monday, I applied for a job at a civil rights organization and I am hoping when I get hired (see? I'm trying to remain positive with the WHEN, not IF), that this will be a bridge job, something to pay my bills (and make a tangible impact in the lives of others, too, hopefully), and will bridge the time between now and whenever I am able to finally make the transition into what I believe is patient advocacy regarding consulting with them more thoroughly about their current medications, health issues, and trouble shooting any possible vitamin/mineral deficiencies.

Last Monday, I not only sent in my application and resume, but I also had an automated phone screening--so I'm hoping and waiting for the next step--the face-to-face interview. I need to dust off my prepared scripts I generated in previous years--and start reading up a bit more on this new organization, to ask specific questions during the interview.

I am using the power of positive thinking and the law of attraction with the words I choose. The job would be close to a 6% pay cut, but the commute is shorter--and by shorter, I mean shorter by 200 paces--it literally is at a halfway point between where I park my car and my current office building. I literally can see the building from where I park my car. I've been doing a lot of visualization and planning. I've taken the time to empty my desk out of anything extraneous or non-essential, purging out old stuff--so it's like a spring cleaning of sorts, and I'm setting up a big 3-ring binder of stuff for whomever will become my replacement--something which was not done prior to me landing this job nearly 18 years ago. 

So, I think while I have a wee bit of a lag today, I'm going to do a quick search for NDs, and I'm also going to set up my reference page, in anticipation of a face-to-face interview.  

Mondays are my least favorite day of the week--and I'm trying to change that.

I hope you're having a good day.