u/sector9love

I think I am finally grieving reality.

The fact that I cannot outsmart this.
⠀
I cannot out-research it.
⠀
I cannot outmaneuver it.
⠀
I cannot be organized, informed, persistent, or medically literate enough to force certainty out of a situation where certainty does not exist.
⠀
Accepting Long COVID and hEDS has meant accepting that I no longer understand what is happening inside my own body.
⠀
I no longer know which symptom belongs to which diagnosis.
⠀
Which abnormality is meaningful.
⠀
Which problem should be treated first.
⠀
Which treatment will help.
⠀
Which treatment could leave me worse.
⠀
I used to believe that if I worked hard enough, learned enough, found the right experts, and asked the right questions, I could eventually solve almost anything.
⠀
That belief helped me survive.
⠀
Now it is breaking apart.
⠀
I can’t find the right in-network sub-sub-specialists who understand rare disease, accept new patients, offer virtual appointments, and are willing to treat someone who is mostly homebound.
⠀
At least not fast enough.
⠀
When I do manage to leave my house, I still can’t always get the right MRI protocol.
⠀
The right CT scan.
⠀
The right angiogram.
⠀
The right radiotracer.
⠀
The right organ or vein examined by the right radiologist, surgeon, or rare-disease expert.
⠀
That’s only after battling insurance for whatever scraps of diagnostics they’re willing to give me.
⠀
My future no longer feels like something I am moving toward.
⠀
It feels like the ground beneath me is slowly collapsing.
⠀
At first, the changes were small enough to adjust around.
⠀
Now, every month seems to remove another piece of stable ground before I have learned how to stand without the last one.

Like my whole life is a small pile of sand slipping through my fingertips faster and faster each month.
⠀
When I finally make it through this soul-sucking obstacle course for just one tiny component
of my increasingly complex anatomy, after no less than 8 full months of research, appointments, imaging, referrals, denials, appeals, and relentless self-advocacy.
⠀
Then, if the symptoms, imaging, doctor, and available treatment somehow cosmically align,
I am left gambling with an irreversible decision.
⠀
Maybe there is a 60% chance that 20% of my symptoms could improve.
⠀
Maybe the evidence comes from a tiny group of 10 patients studied more than a decade ago.
⠀
Maybe it helps, assuming nothing goes wrong.
⠀
Assuming we are treating the right problem.
⠀
At the right time.
⠀
In the right order.
⠀
Assuming it helps more than it hurts.
⠀
Assuming it isn’t all in my head.
⠀
The immediate decision I am facing is whether to have a styloidectomy for vascular Eagle syndrome.
⠀
I am terrified that we could be wrong.
⠀
That I could make an irreversible decision, be left with a permanent scar across my neck, and experience no relief.
⠀
Or become even more disabled.
⠀
The fact is that there is not enough evidence to make the decision feel safe.
⠀
But doing nothing does not feel safe either.
⠀
This is really happening.
⠀
A virus stole my life, my future plans, my hopes/dreams, my appearance, my relationships, and so much of my physical, cognitive, and creative ability four years ago.
⠀
The science cannot keep up.
⠀
I feel like I am getting sicker faster than I can understand why.
⠀
The best doctors, surgeons, researchers, and experts do not have consensus on how to treat all of these problems, let alone when they occur in the same patient.
⠀
They are doing their best, but they often do not know how to help us.
⠀
I could spend everything I have.
⠀
I could have three surgeries a year.
⠀
I could keep pushing through three to six specialist appointments, procedures, and tests every week.
⠀
And I still might never get better.
⠀
I can find every “world class” expert.
⠀
Read every study.
⠀
Analyze every appointment.
⠀
Ask every possible question.
⠀
I can make the most logical, data-driven decision available using the best information that currently exists and still be gambling with greater disability.
⠀
Sometimes it feels like I am gambling with survival.
⠀
I can survive the false hope.
⠀
The poking and prodding.
⠀
The medical gaslighting.
⠀
The scars and scar tissue.
⠀
I can try every supplement, diet, medication, physical therapy protocol, nervous-system program, and biohack anyone recommends.
⠀
I can be the perfect patient.
⠀
I can try so damn hard.
⠀
But I cannot force medicine to have answers it does not have.
⠀
I cannot guarantee that the next procedure will be the right one.
⠀
I cannot research my way into certainty.
⠀
I think that is what I am finally grieving.
⠀
Not only that I am sick.
⠀
I am grieving the loss of the belief that intelligence, persistence, and perfect self-advocacy can protect me from making the wrong decision.

I am grieving the idea that the best science and doctors in the world would have answers for me.

The hope that they would be confident in their treatment recommendations.
⠀
There may never be enough information to know what the right choice is.
⠀
And yet, I still have to choose.

I have to be the one to decide how much suffering I can really take, which data I believe, which expert is most skilled or certain, if I’m desperate enough to risk everything for 10% better.

If I make the wrong choice, I am the only one living with those consequences.

I am the only one responsible for cleaning up the aftermath.

I am the only one responsible for my own survival, for accepting that despite losing so damn much of myself I could always lose more.
⠀
I have a feeling other people with Long COVID, ME/CFS, hEDS, dysautonomia, or other complex illnesses understand this particular kind of grief.
⠀
How do you live with having to make life-altering medical decisions when there may never be enough evidence to know whether you are choosing correctly?

I think I am finally grieving reality.

The fact that I cannot outsmart this.
⠀
I cannot out-research it.
⠀
I cannot outmaneuver it.
⠀
I cannot be organized, informed, persistent, or medically literate enough to force certainty out of a situation where certainty does not exist.
⠀
Accepting Long COVID and hEDS has meant accepting that I no longer understand what is happening inside my own body.
⠀
I no longer know which symptom belongs to which diagnosis.
⠀
Which abnormality is meaningful.
⠀
Which problem should be treated first.
⠀
Which treatment will help.
⠀
Which treatment could leave me worse.
⠀
I used to believe that if I worked hard enough, learned enough, found the right experts, and asked the right questions, I could eventually solve almost anything.
⠀
That belief helped me survive.
⠀
Now it is breaking apart.
⠀
I can’t find the right in-network sub-sub-specialists who understand rare disease, accept new patients, offer virtual appointments, and are willing to treat someone who is mostly homebound.
⠀
At least not fast enough.
⠀
When I do manage to leave my house, I still can’t always get the right MRI protocol.
⠀
The right CT scan.
⠀
The right angiogram.
⠀
The right radiotracer.
⠀
The right organ or vein examined by the right radiologist, surgeon, or rare-disease expert.
⠀
That’s only after battling insurance for whatever scraps of diagnostics they’re willing to give me.
⠀
My future no longer feels like something I am moving toward.
⠀
It feels like the ground beneath me is slowly collapsing.
⠀
At first, the changes were small enough to adjust around.
⠀
Now, every month seems to remove another piece of stable ground before I have learned how to stand without the last one.

Like my whole life is a small pile of sand slipping through my fingertips faster and faster each month.
⠀
When I finally make it through this soul-sucking obstacle course for just one tiny component
of my increasingly complex anatomy, after no less than 8 full months of research, appointments, imaging, referrals, denials, appeals, and relentless self-advocacy.
⠀
Then, if the symptoms, imaging, doctor, and available treatment somehow cosmically align,
I am left gambling with an irreversible decision.
⠀
Maybe there is a 60% chance that 20% of my symptoms could improve.
⠀
Maybe the evidence comes from a tiny group of 10 patients studied more than a decade ago.
⠀
Maybe it helps, assuming nothing goes wrong.
⠀
Assuming we are treating the right problem.
⠀
At the right time.
⠀
In the right order.
⠀
Assuming it helps more than it hurts.
⠀
Assuming it isn’t all in my head.
⠀
The immediate decision I am facing is whether to have a styloidectomy for vascular Eagle syndrome.
⠀
I am terrified that we could be wrong.
⠀
That I could make an irreversible decision, be left with a permanent scar across my neck, and experience no relief.
⠀
Or become even more disabled.
⠀
The fact is that there is not enough evidence to make the decision feel safe.
⠀
But doing nothing does not feel safe either.
⠀
This is really happening.
⠀
A virus stole my life, my future plans, my hopes/dreams, my appearance, my relationships, and so much of my physical, cognitive, and creative ability four years ago.
⠀
The science cannot keep up.
⠀
I feel like I am getting sicker faster than I can understand why.
⠀
The best doctors, surgeons, researchers, and experts do not have consensus on how to treat all of these problems, let alone when they occur in the same patient.
⠀
They are doing their best, but they often do not know how to help us.
⠀
I could spend everything I have.
⠀
I could have three surgeries a year.
⠀
I could keep pushing through three to six specialist appointments, procedures, and tests every week.
⠀
And I still might never get better.
⠀
I can find every “world class” expert.
⠀
Read every study.
⠀
Analyze every appointment.
⠀
Ask every possible question.
⠀
I can make the most logical, data-driven decision available using the best information that currently exists and still be gambling with greater disability.
⠀
Sometimes it feels like I am gambling with survival.
⠀
I can survive the false hope.
⠀
The poking and prodding.
⠀
The medical gaslighting.
⠀
The scars and scar tissue.
⠀
I can try every supplement, diet, medication, physical therapy protocol, nervous-system program, and biohack anyone recommends.
⠀
I can be the perfect patient.
⠀
I can try so damn hard.
⠀
But I cannot force medicine to have answers it does not have.
⠀
I cannot guarantee that the next procedure will be the right one.
⠀
I cannot research my way into certainty.
⠀
I think that is what I am finally grieving.
⠀
Not only that I am sick.
⠀
I am grieving the loss of the belief that intelligence, persistence, and perfect self-advocacy can protect me from making the wrong decision.

I am grieving the idea that the best science and doctors in the world would have answers for me.

The hope that they would be confident in their treatment recommendations.
⠀
There may never be enough information to know what the right choice is.
⠀
And yet, I still have to choose.

I have to be the one to decide how much suffering I can really take, which data I believe, which expert is most skilled or certain, if I’m desperate enough to risk everything for 10% better.

If I make the wrong choice, I am the only one living with those consequences. I am the only one responsible for cleaning up the aftermath, I am the only one responsible for my own survival, for accepting that despite losing so damn much of myself I could always lose more.
⠀
I have a feeling other people with Long COVID, ME/CFS, hEDS, dysautonomia, or other complex illnesses understand this particular kind of grief.
⠀
How do you live with having to make life-altering medical decisions when there may never be enough evidence to know whether you are choosing correctly?

I'm posting because this is outrageous.

I am so angry that this is happening to so many of us with aging pets.

My little guy, Berkeley, is almost 16 years old and has been continuously insured with Healthy Paws since 2018. The fact is, I would do anything for him.

Watching him age and get sick is heartbreaking on its own, but the icing on the cake is feeling like the company I trusted for almost a decade has me backed into a corner at the exact time we need the coverage that I've been paying for all these years.

It makes me sick to say that I've paid over $10,000 in premiums since Berkeley's rate jumped to $761/month last year, and it has now increased again to $952/month.

Yes I know the usual advice is to cancel and put the premiums in savings but that math just doesn't work for a dog with multiple chronic health issues. When a single lifesaving surgery can cost $20,000+, or one emergency vet visit in Southern California can easily be $1,000–$5,000, I honestly feel trapped. Even at these obscene monthly premiums, keeping the insurance still protects me from a catastrophic financial hit. Quite frankly, it may be what keeps my soul-dog alive longer.

It's equally ridiculous that the only way to decrease our monthly premium is to reduce coverage or increase the deductible.

At this point, reducing his coverage isn't an option, and neither is cancelling. Berkeley continues to decline in health and requires expensive medications, diagnostics, and specialist care.

Monthly premium history:

• 2018: $57.87/month
• 2019: $63.69/month
• 2025 renewal: $263.54 → $761.66/month (189% increase)
• 2026 renewal: $761.66 → $952.11/month (25% increase)

Needless to say, I nearly fell over when I opened the 2025 renewal. I can't believe a 25% increase now feels "reasonable" by comparison.

I used my robot bestie to see if there was any way to challenge the increase without reducing coverage. After reviewing my renewal notices, Chat helped me put together a list of questions and a script for the customer service phone call.

I spent quite a while on the phone with Healthy Paws and was eventually transferred to a "customer liaison manager."

Here is what I requested:

• A premium reduction without changing coverage
• A formal rating review
• A detailed explanation of the increase from $263.54 → $761.66 → $952.11/month
• Confirmation that all of Berkeley's rating information (age, breed, ZIP, sex) was correct
• Whether his increase was average for his California rating group or higher than average
• The reasons specific to his policy, not just generic statements about veterinary inflation

They escalated my case for a formal rating review, and I'll update this post when I hear back.

Has anyone else requested a formal rating review? Did it actually result in anything?

If enough of us are seeing increases like this, I'd be interested to know whether anyone has explored regulatory complaints or other avenues beyond simply accepting the renewal.

I’ve been moderate / homebound for a while and finally got out of rolling pem recently.

Silly me started getting hopeful about the future.

My 15 year old dog got sick today and as soon as I opened my eyes I knew he needed to potty. No time for my pots meds and adequate hydration, I had to immediately take him out if I wanted to avoid a mess that would cause me to crash later.

He had me walk him 4 times in the morning (I usually can only walk him once for 5 mins but he kept whining by the front door after each walk), when we get back inside he’s refusing food, and when I least expect it, he pukes 4 times and gets 3 pools of bloody diarrhea everywhere. On thick carpet.

Immediately I know I will be severe after I survive today.

The vet says I have to go to urgent care because it’s an Addison crisis. I’m already upset bc I don’t have energy to clean 7 different messes on carpet. I have to leave it and go or else I won’t be able to drive.

I am stressed driving to the urgent care, turn left to get into the parking lot - coast is clear because all the cars are stopped, and bam I get hit by a car.

I haven’t been in a crash ever. I rarely drive.

I couldn’t even speak because I’m so panicked about my dog - all I can manage to do is get the drivers info take pics and run my dog into urgent care. I explain to the staff what happened and how I need to go back and talk to the driver after dropping my dog. Then I have to recite all of his meds, his vets name, his age etc (rapid fire mind you) to the staff because there’s a long wait and they need to triage him before i leave.

The guy is chill, doesn’t want to file a claim. It seems like superficial damage to my car his bumper is a mess. He leaves. I’m sitting in my car - in shock trying to figure out what to do next - realizing I have a headache on the right side of my head and my neck hurts.

Call my therapist and she tells me I need to go to the emergency room for a concussion.

I just can’t possibly imagine an ER trip and medical gaslighting in the middle of this god awful day.

I don’t even know if my dog is going to be okay or if my car is safe to drive, and I’m worried I’ll never recover from all of this exertion as it is. My caregiver isn’t responding and I’m all alone to deal with whatever aftermath comes my way.

MECFS is so unfair. There’s no good options for surviving emergencies.

Well…this is a first. Wondering if this has happened to anyone else because I am mortified 😭

I am still recovering from a massive excision surgery (stage 4 + adeno, total hysterectomy with BSO) in February and I’m on lots of different G.I. meds. Yes I’m also doing Pelvic Floor PT, ugh.

There I am in the shower…shaving my right armpit, minding my business on my shower chair. I feel a little fart coming on and I’m like this is fine no big deal. It was NOT fine, friends. I immediately jump up unsure of what to do next, and I just freeze. I finally come up with a game plan to hose it off, literally screaming at this point. All of a sudden more starts coming out and I’m just standing there screaming noooo ewww helpless to stop it.

Big FU to endo.

The only positive - I learned that a bidet is in fact more effective than toilet paper.

I will now spend the rest of today bleaching out my bathtub (and my shower chair) and cursing endo.

Well…this is a first. Wondering if this has happened to anyone else because I am mortified 😭

I am still recovering from a massive excision surgery (stage 4 + adeno, total hysterectomy with BSO) in February and on lots of different G.I. meds. Yes I’m also doing Pelvic Floor PT, ugh.

There I am in the shower, shaving my right armpit, minding my business on my shower chair. I feel a little fart coming on and I’m like this is fine no big deal. It was NOT fine, friends. I immediately jump up unsure of what to do next, and I just freeze. I finally come up with a game plan to hose it off, literally screaming at this point. All of a sudden more starts coming out and I’m just standing there screaming noooo ewww helpless to stop it.

Big FU to endo.

The only positive - I learned that a bidet is in fact more effective than toilet paper.

I will now spend the rest of today bleaching out my bathtub (and my shower chair) and cursing endo.