I quit really talking about my health issues on here when (redacted) started reading/following, bcs of (redacted)’s OCD and enmeshment issues.

But sometimes I just feel like my head is going to explode with how complicated and how ridiculously hard to do EVERYTHING is for me these days. Nobody, and I mean NO!….BODY! but God and self knows the scope of our individual burdens and battles. Nobody but God and self, understands just how many things serve to COMPOUND the degree of challenge, that I have with regards to trying to do necessary things and acheive and maintain the best health and functional ability as is possible.  Just as an aside, I write this not just to vent, but also to acknowledge all you other folks out there who may, while having a different set of challenges, cope with a similarly heightened level of frustration/limitation daily,  even without consideration of the general crumbling of US healthcare.

I will start with an example. Due to the fact I’m not getting any younger, and aging generally does entail declining health in more cases tha not, we made the difficult decision to add me to my husband’s insurance. Difficult because the one time I ever took on additional insurance, which became the primary one, it messed me up significantly with regard to doctors I was established and comfortable with, and had to change those. Also, the added insurance became primary and presented more hoops to jump through. I ended up paying higher copays and changing meds to suit that insurance’s formulary. That was 20 years ago. 7 years later when I was diagnosed with an autoimmune disorder and the cost of the med I take for that is exhorbitantly (and imho criminally high, thanks to the Pharmaceutical-Congressional complex and their corrupt and abject greed), which has doubled in it’s price every year of the 15 or so years I’ve been on it. I had to get grants, which also is true for many meds that others must have.

As feared, the new insurance balked at taking on that expense at all, and instead wants to force me to switch to a newer med, pill form, that is contraindicated in my case due to other conditions I have. I already had been on the liquid form of this alternate drug, so it’s all on record. But someone with credentials has to tell the insurer why staying on current one is medically necessary. Plus, it being end of year, it was time for a new prior authorization on it for 2025. Also, my usual Physician’s Assistant Sleep Specialist was out on emergency leave, and her fill-in had never seen me previously and wasn’t comfortable establishing the medical necessity on one appointment with me, so she went to the head Doc / practice owner, who arbitrarily decided I would be referred to a whole different practice, indicating (to me) that remaining a patient was not an option. The substitute P.A. called and informed me, Monday, after my having been in ER from 6 to midnight the orevious night (for unrelated problem) and told me she disagreed with transfer of care under these circumstances, and talked him into being allowed to offer me one more visit with my normal Phys Assistant before transfer. To reiterate:  my impression was that owner/doc wasn’t going to let me stay on, thus what’s the point of one more visit? The problem revolved around having to provide additional documentation/paperwork required to try and get current med approved. Also I was told they had stopped taking NEW patients who were on this med, over a year ago, as well as stopped initiating  the prescribing of it , and I was only “grandfathered in” because I was an established patient who was maintaining improvement on that med and had a track record of compkiance. I was NOT happy that no one informed me at the time when they stopped prescribing it. I should have been informed. I was extremely unhappy they were dropping this bombshell abruptly and with limited time to establish care elsewhere and for the next Dr to do the battle with my new insurance which would be necessary, IF they would even consider approving it.  Had they informed me they were no longer prescribing, I could have choosen  whether I wanted to stay, and not be forced to leave because of the snafu, but rather do my own research and choise a new provider. I found out the next morning my private health information was provided to said other  doctor whom I never even heard of! The fill-in PA was nearly as upset as I was, but the way I understood it, the dismissal of me was head Doc’s  final word, whether now or after “one last visit”. I basically said “ok, so I essentially have no other choice but please convey the message to (head doc) that if I experience a lapse in treatment because of his decision, I WILL sue him”. She said she would.

Another aside, I and my records were, incidentally, handed to the  above-mentioned currently offending practice in like manner 3.5 years ago when the prior doc suddenly closed his practice! I thought it was a new hire or new group bought out the first practice. I was there for the same appointment (date, and time) given to me by the first practice, and in the same office.  I didn’t appreciate having not been informed, however, the first practice did strive to replace the first doc for several months, so when I discovered the appointment was with a new doc, I thought they had finally found a replacenent/new hire doc.  I  understand there’s an obligation on the part of first doc to facilitate and ensure continuity of care, but without EVER notifying the patient? I had been receiving care with the new doc, or associates, for  9 months before I even found out it was a different practice entirely!! Same location. Same phone number, even!  Similar enough name that I didn’t register it, I mean when you have been going to a place for 11 years, who even looks at the sign? Everything is digital, so no letterheads. Shady dealings, all around for “second practice”, who is the offending practice in current saga.

People!  This re-homing of patients like pets without the patient even being informed and having any say so in the matte is wrong, unethical, and one would think, not even lawful. I would argue that if there’s no specific law prohibiting it, as violation if the “Patient Bill of Rights”  is not actionable in court. That’s right. Boards and oversight bodies can fine them, but as for compensating the oatient? Nope! However, what IS actionable is violation of 4th amendment privacy, and of the Americans with Disabilities law. So I haven’t ruled out consulting a civil rights attorney regarding this most recent re-homing incident.

When the “rehoming” happened this time, 2 different people pointed out that considering the several problems I’ve endured with my (until last week) current practice, maybe they did me a favor and maybe the new guy would do better. I chose to take that perspective and reserve judgment for after my first appointment.

Lordy mercy ya’ll! Things is just crumblin’!

Here’s some other background about me for anyone new here.

1) I am profoundly hearing impaired. It’s congenital and progressive, meaning it will always be getting worse). As such, my preferred mode of communication is email or Internet portal, ie written as opposed to by telephone. A hearing impaired person not only can miss something spoken, we can HEAR something other than what was actually spoken, reason being: the brain tends to fill in blanks for those bits we didn’t hear. It can be soft letter sounds. It can be deep voices if your hearing loss is in the “base”/lower register range sounds, or if your loss is in the high register, many female voices or children’s voices, higher pitched sounds may be very hard to decipher. Like most conditions, the clinical picture is different in everyone.

Also, glass dividers! ( muffled sound). Also, masks! (I can lip-read, but obviously not when everybody is wearing masks!!!!).

2) Because of a lot of bad experiences; missed diagnoses (plural) and some just plain incorrect ones, I have a very PTSD-esque “thing” I experience with any and every interaction with doctors. This is  especially so any time I have to go to a new one, and particularly male ones. This may also be in part related to prior sexual assault and domestic violence I endured in my 20’s. So, there’s some possibility that the “-esque” is unwarranted.

3) I have tremors. Tremors are always worse when your nerves are riled up. (Which, said “riling-up” obviously is gonna happen when  afore-mentiined head doctor has the audacity!!!). Plus,  every new doc, every test, every labwork, involves filling out copious forms, and providing comprehensive medical history. Being expected to remember and write or recite my numerous health history facts on demand is stressful. Anytime it’s an option, I try to do it before the day of the appointment.

4) I have balance issues. People in healthcare walk fast and say “follow me” a lot. They also tend to throw instructions or other importabt info over their shoulder while you are following.

5) I have fibro brain fog, but also at now age 60, I seem to be following the same trajectory as my Mom did as far as difficulties with my memory. I blamed hers on her fibro and nerves for many years but as she neared the end, the way it progressed made me think it had been early dementia progressing all along.

So, back to the main stream of this diatribe. I met the new Dr.

Impression: “Ok, maybe this is better than the old one! Maybe it’s a God thing?

New doc asked me to do a home sleep study without my bipap machine. Woah, slow yer roll there, Doc!

Ya’ll, I have awoken more than once desperately gasping for air so hard that there are times I was so hypoxic (oxygen deprived) that it took nearly 45 minutes to stop gasping and feeling the “air hunger” effects of low oxygen. If it wasn’t dark, I’d have probably see I was turning a bit dusky!  Which tells me I stopped breathing for a scary- long amount of time. That was with cpap! So asking me to do a sleep test without the machine, is a scary proposition for me. Not afraid to die, just afraid of (more?) brain damage!!!!  Hello?

I’m trying to make a long story shorter, but ya’ll  #Heavy_sigh

Anyway….I go in the portal to email the new doc the day after my appointnent. No response a week later, then call  nurse to ask if portal messages are checked. (If not, that feature can and should be turned off). I have misgivings and questions about the test. They never all come to me during the appointment, because I’m triggered already, they only come after my fight or flight subsides. Which happens AFTER I leave the appointment.

So if I can’t get questions answered I will need to cancel. Because I gotta confirm or cancel today! So, I cancel. An hour AFTER I cancel, the Doctor calls to answer my questions! 😣

I think every system that keeps our lives, and the world running, is now in disarray ever since Covid. People’s systems. Supply chain systems. Transportation and agriculture systems. Political systems, you name it!

These electronic medical records and online Portals.Just grrrrrrr!

Wasn’t our record, all doctors notes, all hospitalizations, tests etc supposed to all be accessible in one place? Wasb’t that the concept they sold us. Not a dozen different portals with a dozen passwords to keep up with? I did notice that last one I registered with asked me to opt in or out of what amounts to a master record of sorts, so maybe thats the phase 2 of collecting evrything medical, and adding it to our dossiers.

Even saving passwords on phones, they randomly get removed. By clearing cache? By autoupdates?  This particular portal? One staff member or practice calls it “Healow”, another refers to it as “eClinicalWorks”.

Other portals also have more than one name. Practicioners may know this, but informing the patient? No.

Why two names? and how am I to know these two different names are referring to the same thing? I registered as instructed, and come to find out, I have 2 other of my docs on that particular system (or platform or whatever?) but there’s not a way to go on there and click between the three while signed in.  Its not 3 different accounts because the username is an email addy. But I have to have different passwords for each practice. Either that, or when I register with a new provider, I am inadcertantly somehow changing singular passwords chosen when registering with prior practices. Part of my record for one doc was even shown with those of one of the other if the 3!!!

So, anhhoo, I register for the new doc, but my password when I try to enter the practace portal, returns as “incorrect”. Double and triple checked. Clicked the “need help” button, chose “reset password”, went to email (as instructed),  & clicked provided link. Where does link take me? To a page where I can change the password?

Oh no. No, that’d make too much sense.

Can’t have that!

It takes me back to the login. For which my password still is not gonna wooooorkkkkkk!!!

Whaaaaat?

“Medicare Advance” telemarketers call in the midst of tryna do all that. Three different ones! These start promptly at 5:01 pm and continue til 8pm.

Hard enough to keep my train of thought as is, much less relocating it after  disruptions. Even if I don’t answer, I have to open a screen to see if caller is anyone important. Btw, I do ALL THIS on my phone. It’s the android with the biggest screen but still, it’s not a tablet or laptop.

Meanwhile over the past 10 days two other pretty significant medical concerns have cropped up as well. Bleeding and low hgb and other labs that are abnormal, including BUN/Creatinine ratio (kidney function) and concerns about urinalysis that my PA felt worthy of a referral to urologist.

It’s hard for me to focus my mind and thoughts. It’s hard to deal with (and I loathe it) when I have to go meet yet another new unfamiliar doctor.  The not being able to hear, the having to ask again and again for them to repeat something because once I inform them I am hearing impaired, and ask them to speak louder, they say the next thing louder, then revert back to their normal volume, because that’s just their default normal. It’s unnatural to have to protractedly shout. It’s beneath their dignity, in some cases.

The paperwork, the phone calls. I’m not throwing shade, but I surely do resent when they get irritated with me about my inability to hear and process, (or take too long to fill out paperwork or get to the exam room).  I can’t listen any harder, move any faster, write any quicker (leastwise ifn they intend for it to be decipherable!) Only they can SPEAK LOUDER! I can turn my hearing aid all the way up, but the problem with that is, the buzzing lights, the traffic noise, the office noise, squawking birds are ALSO LOUDER! So it’s still hard to catch everything, or be sure I have understood correctly, plus this all quickly becomes sensory overload, so needing the hearing aids up at high volume, grates my already frazzled nerves. (Sensory overload to the 3rd power? Surefire trigger!!)

Also consider the fact that I have had to interact with at least 2 other staff (front desk, then nurse or medical assistant) before I even see the Doctor. Who proceeds to ask all the same questions the nurse did, and say he only got one page of records with the referral. Even though “practice A” faxed 50-some pages! (per the office Manager)

All the measures that have been implemented, under the guise of improving healthcare, have only complicated it more!

If you’re elderly or have impairments, it quadruples the complexity.

AI algorythms are doing the deciding on every medical cost, as to whether or not insurance will pay. Insurance is covering and paying for less and less every year and  no human even weighs in after launching the algorythm, until the appeals stage.  I’d even wager the first, maybe more, of those appeal steps are also determined by AI before any human gets involved.

If you ask me, algorythm is a curse word!

I do not like this world. I haven’t even enumerated all the layers of factors that compound the orocess of resolving/reporting/understanding/clarifying/accomplishing/communicating things. Any things! But my tired brain has just about ground to a halt just trying to articulate what I wrote thus far!

Even a mere decade ago, good employees generally still had compassion and patience with customers and patients, especially elderly ones. That isn’t something that exists in most circumstances now. In retail, restaurant, healthcare, doesn’t matter. Rare as hen’s teeth!

And just about everybody I talk to has  similar stories. Multiple times a week, someone I know, or a friend of a friend has been diagnosed with cancer, (or had a heart attack, or lost their job, or are facing foreclosure, or can’t get justice, or done dirty by some cop or doctor or business).  Other people are having strings of different types of chaotic, life-disrupting, alarming, or frustrating things happening one right after the other. Like walking a minefield.

Terrible and ludicrous interactions with people are happening between people as they interact in the course of normal daily life  activities!

Feral!!!! Animalistic. Demonic. I myself have been seeing dark figures dart past in my my peripheral vision in our hiuse. Others are reporting encounters with very concrete bodily present entities, like nephilum,  aliens, Ufo’s, and ethereal ones like Glimmerman, and shadow people.

Then, I go to scan the news! On one website alone, the mere 3 articles I read were soul-crushing, sickening, and demoralizing. One about a Christian pro-lifer in jail for defending babies.  Not blocking entrances, not harassing, not addressing anyone specific, not even shouting,  just speaking audibly, pro-life sentament! Another was about two “married” gay men and what they did to their two adopted sons who are, I think,  11 and  5 (or 6?) years old. Quotes from the judge and prosecuter were, in my view, downright righteous. The acts performed, and the attitudes of the perpetrators were un.be.liev.a.ble! They were so not owning the depravity and evil of their actions, while claiming to have found Jesus in jail via a gay-friendly church ministry.  Discreetly worded facts and specifics in the article stunned even me!!

Coming from someone who watched and posted Oct 7 footage out of Israel, and stuff about trafficking, I don’t even see how I am still able to be stunned! I guess because I stopped even looking, and even clicking and actually reading full articles after Oct 7, for the most part, so the desensitization maybe had waned some? I just can’t stomach any more. I mean, I still try to be aware. May read headline, and last paragraph of some things. I rarely finish watching videos these days.

Stress eats away your immune system. I have some chronic conditions, but oddly enough, it was very rare for me to catch all the bugs du jour, even when hubby used to bring home every one of them from his call center job. Now, and working from home, everything he catches, I get. He’s always first, but  give me 3-6 days and I will have it after him.

The 3rd article, I didn’t read past the second paragraph. It was about Faucci and the “c 1 niner”. We were very informed during the realtime, so I didn’t expect the tsunami of disgust that ran through me as I read that one!

These many years of prayers daily and unceasingly prayed, for God to prepare me and our family for whatever may come down the road before our departure, and current prayer others still are praying, are the only reason I haven’t spontaneously combusted by now, or collapsed into a useless lifeless heap.  I have to trust those prayers will continue to stand and that the Lord will get us through, because the level of resistance coming at me from the pricipalities and powers of darkness are already more than I can endure. Yes there’s some waxing and waning of occurances, but intensity and frequency keeps right on increasing in these personal developments.

When adrenaline is automatically spiked by anything, adrenaline’s gonna do what it does! I think everyone, lost or saved, even the most  faithful, are in some degree of sustained fight-or-flight by now.  It takes some time, at least for mine, to ratchet back down from the spikes. It isn’t just signs that are increasing like labor pains, it’s human flesh, physical bodies and minds, increasingly experiencing a ceaseless onslaught at this juncture. My body over-reacts to those jolts. Rockets up fast, depressurizes back to calmness very slowly. I have to get alone, preferably at home, and be in quiet, to get there. I’ve not “mastered” eliminating them, if that is even possible. Anyone who is feeling “really zen” right now, can’t possibly be informed. Or they are drunk or high. Or spiritually blind and deaf. For me,  It’s an autonomic pattern developed during significant sustained stress from 1983 all the way to 2017, with a bit of a relative reprieve in 1993, 2019, and during lockdown, then about half of 2024 and then right at it.

I’ve had one doctor tell me he believed I have PTSD. He was filling in for my regular psych doc and I only saw him 3 times. I didn’t understand as much about PTSD at the time, so I didn’t really give his statement much credence. However, I do have most of the markers according to screenings I’ve done (unofficial, tho).

Most of the stuff I experience when stressed, hasn’t changed over the intervining years, even though the stress factors have diminished. The meds I took at various times have mitigated it to a fairly tolerable level most of the times while on them, so I never saw the point of seeking professional evaluation/testing for PTSD.  I have had more than enough labels stamped on me already! Some accurate, some not.

Mostly y’all, I am just “over” life on planet Earth as we currently know it. This Pilgrim is pooped! I passed “ready to go” a very long time ago, and I’m lapping it for about the 15th time.  As my Mom would have said, “I’m plum wore out!”  There’s not even that many demands on me nowadays but even those, as well as any project I choose to do, I still can’t keep up. I start in the morning, and the hours evaporate, and I’m still only getting started or have very little progress when 4 or 5pm rolls around, at which time I typically start supper supper, we eat, I do dishes, and shower and have some quiet time reading or listening so I can wind down.

Age accounts for some of this, but I’ve had limitations for a long time now, so I’m still sort of incredulous at “how much more” I cannot get done these days as compared to even just 5 years ago.

5 years ago, I also almost never got colds, viruses or flu!  My husband typically catches those fairly frequently, but it very rarely would ever spread to me. Now I do catch his bugs. I didn’t get the jab, so it must be the chemtrails, poisons and gmo’s and, yes age is also a factor. Whether Covid is new or colds, flu, and viruses have been intentionally made worse, these yearly bugs definitely are getting worse. Lasting longer too.

  Having the latest bug crud on top of chronic stuff is a bummer!  A bridge too far! No Bueno!

I believe we are in the last seconds of the last hour, because of prophecy and the indications that are screaming from every arena. But I also believe it because I and so many others are at my/their limit, and surely, surely the heavenly “cup of God’s Wrath” is gonna overflow very soon!!!  Lots of developments seem to have already started to exceed anything previously experienced in world history, right? Just me?

Anybody else out there experiencing this personal tailored multi-crisis phenomenon? This sense of trying to swim through jello in a lead suit?

Ya’ll, I done already been lighting the flares, sending up heaven-bound distress signals.

S.O.S.

Mayday Mayday!

I’m making light of it, but in seriousness I am having more and more moments where I really struggle.

Cataracts, bodily weakness, CNS issues, wonky balance, pain, slowed movement, difficulty getting focusing on whatever I’m attempting to do, positional numbness of extremities, being already an HSP (Real medical abbreviation for highly sensitive person) before all of the above (by God’s design), mental processing difficulties and constantly fluxuating symptoms make planning as well as executing a plan, pretty challenging. Some days better, some days worse.

I once heard about a business geared toward eldercare, that implemented a policy that all employees, (and willing family members of elderly patients) were encouraged/allowed to take part  in a particular exercise.

Imagine you are one of these participants as you read this!

Participants had been instructed to wear casual, comfortable clothes. Upon arrival they were given weighted vests to put on, simulating decreased energy, and 1to 3 pound wrap weights, according to their build.  They all got duct tape wrapped around their knees, ankles, and elbows.  The weights were put on wrists and ankles. Flexible band-aids were put around the middle and distal joints of each forefinger, middle finger and the upper joint of each thumb to simulate stiffness. They also had to wear gloves, to simulate diminished tactile sensation, dark glasses smeared with a thin coat of vaseline on one eye to mimic declining vision, earplugs to dampen sound, as well as light wireless headphones, the hook-over- the-ear kind, to simulate distortion of sound.  Also masks for limiting the sense of smell.

They were taken to a fairly dimly-lit and very cold room that was filled with everyday items (chair, dvd, can of soup jug of milk, etc) that were all intentionally weighted more heavily than they normally would be. This room was also equipped with a system that could generate a variety of smells or odors. They were then asked to perform specific tasks of the common everyday variety. Some of those tasks included reading a prescription label, turning pages of a book, picking up a needle,  listening to and completing a 5-step set of spoken instructions, getting down on the floor and back up, moving a chair, stepping over elevated rails of various heights and widths, stairs to traverse, and were  blindfolded, then asked to maintain balance on a small platform which made subtle shifts up, down, back and forth and side to side, while holding a lid-less cup of water without spilling it and simultaneously answering basic questions asked by someone nearby while discordant sounds, voices, and chaotic music were piped into their headphones at modest volume. After these exercises, participants were given a questionaire which asked these 5 questions:

• Whether they smelled any or all, at any point during the exercise, the following (vented-in) odors:   sulfer (aka”rotten egg” smell), smoke, coffee, popcorn, and bleach.
• How they felt while trying to do these tasks?  (Emotionally and physically, or even intelectually)
• How difficult each task was, while having the (simulated) limitations? (By rating each one on a set scale).
• What, if any insight have you gleaned from this exercise?
• What effect do you think having participated will have upon your future interactions with elderly or differently-abled individuals going forward?

The whole point, was empathy, and  understanding that some interactions with some people, do require more time and effort than usual if you want to succeed in whatever endeavor you are engaged in with persons who are elderly or differently-abled (have limitations, aka disabilities).

Personally, I think every doctor, nurse, physical therapist, and certfied nursing assistant/aid, x-ray tech, and anyone else who performs any diagnostic testing or any aspect if direct hands-on healthcare, (perhaps even non-medical jobs like cashiers) should be required manditorily to experience this exercise. They may or may not apply what they learn from the experience in their work, but will at least have experienced a multiplicity of limitations and hopefully can extrapolate and appreciate the ways in which these impairments impact the care and safety of their patients or customers, or loved-one.

As for insurance personnel, namely CEOsand CFO’s and whomever dictates the algorythms, I can’t imagine any exercise that might tangibly and personally impress upon them the impact of what they do to us! It’s that messed up!

But God sees and He keeps records, (and that goes for all unrepentant evil-doers).

….and thats all I have to say-ay about tha-yat! (-Forest Gump)