... because 2020 ...

[t-bone]

I'll have a mod help edit the title to something more suitable at a later time, but this'll do for now

2020 just flat sucks, no other way to put it

Between the corona virus shutting down the world (and our health care/clinics), and the financial problems that is causing

... there's a lot of folks in trouble,

... and it's even worse for those of us with g.i. issues



I've been mostly lucky, but my luck has run out a time or two and some critical care fell thru the cracks

The further off the path things got (wrong meds/botched/missing testing and the like) the worse I got

While most of that effect has been purely medical, it has had a devastating effect on my mental health


I'm a pretty stubburn man, and I waited waay too long to reach out for help
... almost too long ...
I kept thinking it wasn't so bad, I could fix it myself, the dosctors would get things figured out, I could cope,but it just kept getting worse

There's lots of folks having issues this year.
Good, solid workaday folks who had their lives turned upside down by outside events
The smart ones had a plan, and many even had a solid back up plan, but 2020 just flat squashed a lot of folks hopes and dreams and crushed their souls
It is what it is
America is hurting right now, and that's that
It will also heal, bit by bit, little by little things are gonna turn around

Unfortunately, in the meantime resources are being strecthed to the breaking point in many areas

This has complicated many of our medical problems, and many things have been falling thru the cracks.
Appointmtmnets scheduled waaay out and then, cancelled, tests not run, been a lot of dissapointing things happening in our doctors offices/clinincs
This is creating additional stresses that are making us sicker, which just stresses us more that makes us sicker in an ever tighteneing spiral

Getting into see competent mental health professionals that can help with our unique circumstances has always been difficult
the crohn~a~coaster of daily variability as things ebb and flare is hard for many mental health folks to understand, but there are resources out there
... you just have to ask for them
...it's damn hard
... but if you havent felt right or been happy in some time, feel hopeless

REACH OUT for some help,

because your health will benefit,
as will you on a personal level
as well as all those who care for you

things always go better when you have a positive attitude, and having someone backing you up on the mental health side of things is key to staying positive

There should be mental health professionals attached to your g.i. clinic

I reached out to mine in early January, and unfortunatelky, it was a disaster
... they don't "get" autism,
... not do they know how to deal with a guy who goes from fifth year resident level of medical knowledge to a guy who cant even form a complete sentence just five seconds later

They can probably help most folks, but not me, so I had to swallow my pride and try again (hospital resources)

... and again (hospital resources)

... and yet again (my internal medicine/pcp resource )

SUCCESS!!!

It's made all the difference in how things are going

I finally found someone who practices sound, old school approaches and doesnt medicate first, troubleshoot later

After several appointments/evaluations, I did have to accept a minimal med (diazepam 10mg that I break in quarters/halves) because I waited too long and my anxiety was too bad to let run ... it was affecting everything ...




But, I can finally see a scosche of daylight, and the medical side of things is calming down significantly


If you're feeling out of sorts, reach out, please reach out for some help

If you don't want to talk to a doctor about it, post a thread here
Ive only joined this forum recently, (and it looks like it was more active in the past) but there's folks here who get it

we live this,
we know how it feels
we have workarounds/strategies for the bad days
we can help you have more good days

reach out/post up

GET BETTER

Thanks for reading, and have a good day




(sorry this is a mess, not good with words, but I feel it needed to said
these are tough times, we've got to support each other and get help when we need it)

 

[t-bone]

Man, I sure made a mess out of my original post

sorry about that!


My wife likes to say that english in my second language
... silence is my first
Probably something to that, as me talking about myself/some things just feels ... awkward ... most times, so I don't say much, and I post even less


Thing is, I'm seeing so many folks suffering this year, so many folks not gettting the care they need, that I just have to speak out.
It's been happening to me more and more, so I know there's probably others in the same boat

I'm hoping that by opening the subject, we will get others to chime in about their experieinces
... ( and hopefully do a better job of quantifying/explaining and maybe find some solutions/ways to workaround it for us ...)

Maybe, just maybe, together, we can find a way to address and resolve things before we make things worse for ourselves waiting for others to care for us

... we need to advocate for ourselves ...
if things are not getting done, we need to push back, and go up the food chain if that's what it going to take
2020 seems to be the year of the "karen", but damnit, we are not talking about a missing stitch/some percieved defect in a dress or a pair of shoes,
this is our very lives we are talking about.

I've now said, "if you don't want to work with me than get someone who will, preferablly your boss or head of the department" twice this year
Their time is valuable, and i get that,(and in short suplly this year) but so is mine, damn it!
I'm done/done with egotistical megalomaniacs who never even read my chart making decisions that will affect the rest of my life

The pathogenesis (had to look that word up awhile back, n i think i misppeled it just now, lol) of this disease isnt well understood, even by the best folks that treat it (they wont admit it, but it's the thruth)

They doctors, they use big words, many of which i don't undestand, .but hey, I got time and i'll look stuff up/suss out the meaning of the words, (and ask for clarification on the ones i still dont get from reading their definitions) so ican understand the clinical presentation/notes/ test results

i do this because i hate not ... knowing ... where im at and whether any of things my wife are doing ourselves at home is working.

i also do this so we can communicate in a language where the doc and i we know we are both being understanded
i gotta come up to their level a scosche, and they gotta dumb it down for me a whole bunch

we are not talking about a brake job on a buick, this is my very life / my future / my everything we are trying to fix

the good docs are ALL about this approach
they flat love it when a patient says "what can i do" and "how can i make things easier for you"
The best will absolutely bend over backwards for those who help themselves
its more work for them, and a whole lot more work for me, but the results are almost ALWAYS spectacular
... and well worth it for us and them
the best docs like to suceed, they like to win, they like to learn what workd, and what didn't so they can improve their practice/help their patients better


I have also noticed that it weeds out the folks who do NOT belong on my care team

... if you dig deep enough, ask probing, knowledgeable questions, the cheesy/smarmy guy'll break down and say "we don't know, but this is what we always do, so well just do that and hope for the best"

no
just
no

The better docs say stuff like "good question, let me see if i can break that down for you" or "excellent observation, lets look into that "

Keep trying, and work with the doctors you got until you can't but I'm here to tell you there's enough "tells" from labs/bloodwork that a saavy dr getting the appropriate data can gin up a minimal medicine/maxiumum benefit treatment plan that fits that particular patients needs and desires to get things headed in the right direction, slow and easy like, while a long term treatment plan can be devised and implemented

not the sulfazwhatevenrthenmtxthenremikadethenhumira and then and then with some steroids thrown in to keep things "controlled"

Do the testing, narrow down the exact clinical presentation, then we can begin those types of conversations
th best approaches start by controlling the imediate problem, then we can start to slow the progression, then we can talk about how to create much happier outcomes


... we need to care for ourselves, for us, for our loved ones ...
in order to do that we need data, and someone to explain it to us in terms we understand
While some of the testing, the reasons behind them and the results are described in technical terms that are beyond simple understanding, I'm going to ask the doctor (and they should of anyway) to break it down some in words we do understand

Awise man once said; "If you can't explain something to a five year old, you don't understand it yourself"

I know my (very important to me) labs have been put off time and time again
How the hell am I supposed to know how I'm doing if I don;t have the data?
The docs say since I'm not overly symptomatic, I'm doing fine, don;t sweat it,
well buddy< I don;t feel fine>

i do not intend to get any sicker if i can help it, as nothing good comes from that

This can, (and has) created problems with staff that say things have to be on a priority basis and there's folks sickker then you

... when I point out I don't want to be sicker than me are already am, and can work on stuff myself i just need some guidance it has caused problems and people have been short/rude with me and a few were even downright threatening my ability to receive care at that facility if I asked for a second opinion or change of doctor




... it is our RIGHT to be Involved in ANY and ALL decisions involving our healthcare and treatment
I simply refuse to take a snap diagnostic from a man in a hurry based one data point / one test result
... especially if that person doesn';t know me, doesn't know my desire to minimize medication

my old pcp would have had me on;
metformin for blood sugar
lispinirol for blood pressure
and probably symbaststin for thyroid
... along with a veritable medicine chest of physche drugs
When i resisted, and wanted more testing/data points, he denied further testing to verify the data, he also labeled me uncoperative and put that in my medical file, so now everyone else who follows starts with the assumption that im a difficult patient

(i am, but not for the reason he stated, i need to feel comfortable that the path chosen is a a reasonable, considered and sensible one)

needless to say, me pretty much parted ways and i went back to avoiding doctors

(15 years later, I have a fasting blood sugar around 95, blood pressure is around 125/85 (ish),
( and that's with zero western chemical "meddling" with mother nature, just a sensible, minimilistical supplement, plan and a whole lotta work )
... and that particular doctor has had multiple organ failures/issues, many likely from the meds he took ... irony is so very ironic

I like to work with mother nature, not against her

This is why I made the first post in this thread
(hard to follow as it was)

... this is a frustrating year
... for everybody
...patients and care givers alike

Seems like there is more conflict and just general difficulties all the way around as resources are stretched so thinly

As patients, conflict with caregivers stresses us out a ton
We have to trust them with out lives, but sometimes they are just zoned out not paying attention going thru the motions ... complacent ...
That is just a recipe for disaster , an how big mistakes in medication doses and the like occur
If they're having a bad day and you point out an error they make or the like, aint nothing good gonna come from that if you do it too strongly
... especially if you're having a bad day as well

... bad stuff has been happening all around me this year
... quite literally, some huge mistakes have been made

(edit, removed personal info)

These are tough times and the health care system is really being stretched to it's limits,
and i get that, I really do,
i see it everything i head to the city for health care

Hospitals are being overwhelmed on many levels,
clinics are closing/locking down and critical testing is being delayed
Critical care is not be doing in a timely manner, or even at all in some cases

I get it, i really do, resources are stretched pretty damn thin

However, I MATTER, and i don't want to get any sicker
(this sucks bad enough, and I don't want to get any sicker



This is why I made the first post of this thread, and why I'm following it up with this one

It's so easy to get frustrated and lash out/become belligerent or even downright pissed off when you are denied what you think is critical care

NOTHING GOOD COMES FROM THAT!

Getting some mental health resources in place will help you on so many levels

From helping you with the mental impact/loss of hope that can comes with this condition to advocating for your care with the docs, and your insurance company they will absolutely change the paradigm of your treatment plan.

and will give you advocate for you and open avenues to address any issues that will RESOLVE the problem while it's still a minor one

Sucks to have humble thyself to reach out for resources
I'm a proud man, and well, we/i just don;t do things like that

but it's the smartest thing i've done this year

things were headed the wrong way, and only getting worse, my docs all but locked me out of access (too many questions they said)
... and i was losing hope / beginning a despair/self pity cycle

luckily my wife was having NONE of that (lol)
while she could have done a better job phrasing things (lol and double lol) she was correct

getting help was absolutely instrumental to getting some semblance of control over my destiny back

sucks it took so many attempts,

but damn did i find an excellent, no bullshit mental health resource/provider
... she's a bit ... blunt ... but holy crap do she get shit done, and done with a quickness!

Please, to all you who have waded thru these posts, consider reaching out

... it may help you as much as it did me



This forum had been a godsend to me,
I wish I would have found it years ago
There's some really saavy folks on here, and a lot of good information for those who are searching for answers

I'll be making more posts as times goes on,
...as i got questions,
... boy do i gots questions

I just wanted to start this topic as things are wonky this year, because resources are so scarce, people are not taking constructive critism well

If you have resources in place, they will advocate for you, and do a better job than we can do for ourselves

speaking only for myself, it's hard for me to not get pissed off when i get disrespected by a man in a white lab coat that thinks he knows everything

... at the end of the day, he's just a man wearing a white coat, it's what's inside the coat that matters

 

[CatLover63]

Visualisation is a useful tool in coping with anxiety, panic or inertia. I like to visualise my problems as characters from a play and watch them filing past. They are not part of me, I can let them float by. Try it.

 

[Tony_G]

I caught COVID in March when the hospitals were overrun and I live in one of the hardest hit zip codes at that time. I couldn’t get care and I was worried it would result in a flare. Living alone didn’t make it I was lucky. My symptoms weren’t life threatening and it didn’t trigger a flare-up.

Fast forward to October, I started to flare (not sure what triggered it) and lost 8 pounds. I waited too long to get my GI involved. He was booked and I managed to talk to his nurse. Took a week and a half to talk to him and get prednisone prescribed. Again, I was lucky and the prednisone got me back on track. Appetite is now back, feel a lot less inflammation and started gaining weight back. It does feel like I’m not being prioritized as a patient during this pandemic, but health-wise, luck has been on my side in 2020.

I hope you have better luck this year both mentally and physically, and can find a care giver that will address your concerns in an open dialogue with you.

 

[CatLover63]

What bad luck catching Covid so early in the pandemic but you now have antibodies which is a good thing. The rest of us who are clinically vulnerable and live alone are battling through as best we can. Boredom is a biggy and can lead to all sorts of mischief.
Spending too much online, drinking, eating and smoking too much and I'm sure doctors will be dealing with the aftermath for years to come. Being constantly told what to do by the authorities for fear of fines or worse is a huge stress we were not prepared for. Overall, if we are not losing the plot completely, we are doing very well. I'm posting from London in England.

 

[Kannassee]

What bad luck catching Covid so early in the pandemic but you now have antibodies which is a good thing. The rest of us who are clinically vulnerable and live alone are battling through as best we can. Boredom is a biggy and can lead to all sorts of mischief.
Spending too much online, drinking, eating and smoking too much and I'm sure doctors will be dealing with the aftermath for years to come. Being constantly told what to do by the authorities for fear of fines or worse is a huge stress we were not prepared for. Overall, if we are not losing the plot completely, we are doing very well. I'm posting from London in England.

Agreed......Sadly society will be dealing with big psychological problems in a lot of people for years to come.