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2022-10-04 - 9:27 a.m.

One thing to add that came to mind when thinking of my college student who will be home in another few weeks for a break is that when packing his stuff that was left in the closet downstairs, I came across a ridiculous amount of bottles of the presecribed medicaiton that the kid DID NOT TAKE.

Yes a full bottle of not only Abilify. (But the kid DID Take it when younger and it worked), but also all the prescribed POTS medication.

Now I understand the fear of trusting Doctors. This kid was on Ratadine for stomach issues and it was pulled by the FDA as it was discovered to cause cancer.k

This kid also was going around saying he might have cancer- so finding that bottle led me to understand the etiology of both the fear of cancer and kinda hypocondriac behavior
and then not taking ability the exasperation of the mistrust of doctors and enhanced kind of hypocondriac tendencies psycologically

YET That is a separate psycological fear thing- thinking you have everything possible

WHICH IS NOT hypocondria when you ACTUALLY have CHRONIC PAIN of CHRONIC ILLNESS and no one really knows the cause of it.

NO mistake this kid had chronic pain in joints and muscles
and now it is know to have been EDS and the POTS symptoms were identified. There still may be other actual undiagnosed causes of this kids ailments.
BUT regardless there is then a mistrust of doctors that is not unfounded when most have missed the disagnosis of actual chronic illness!

This is why therapy I think is so criritcal for anyone with chronic illness. Without it , if you have been in pain for most of your life and it was dismissed as in your head-
how do you get over the anger at that disreagarding your pain
and rebuild trust to even trust ANY doctor to help you?

All this to say it is pretty remarkable HOW WELL my kid is actually doing

Considering he has not taken the presribed medicaiton regularly

AND has complete distrust of doctors.

I mean-

This is the kid who although has struggled HAS successfully completed THREE years of college while living with the chronic illnesses of POTS and EDS.

I mean those are conditions causing CHRONIC PAIN and moments of SEVERE BRIAN FOG and this kid is succeeding

He does it by managing his energy and not taking on more than can handle- so no has not had a job other than tutoring at school.

That is enough. He did not seek a summer job. I get it when I really think about it why he just audited a class or two but did not seek work. Without taking medicaitons he is still managing his symptoms by REST and SLEEP.

That is what is working for him for the most part.

I would like him to trust the specialists again and go back to the dysautonomia clinic and let them help .

But I also get it- that if you can function without medication that may be in fact the best case long term thing for your body.

And it is OK to function at the level YOU ARe OK with- even if it is less than what MOST people do in their lives.

Nothing wrong with the actual disabled person only engaging with the world minimally and resting and just BEING the rest of the time!!

This kid is also ridiculously independent. No attachment to parents or anyone.He does have some friends and relationships so is a hermit much of the time but DOES socialize! He has a best friend who came to visit here a number of times over the past few years. He is really close to him; and another who sent a birthday gift from some other state. He has online community and friends made there. That is our world today and I think that is great for those who don't leave their homes due to disability or other choices/ issues. It is not typical but these non typical people do form community on line and it is enough.

I worked with a lovely young woman who was from Belgim and moved to marry and live in upstate NY outside of Rochester NY. During the year or so I lived there (I think it was Pittsford NY ?? Not Syracuse? Maybe it was Fayetteville Manlius in Syracuse... I forget which as we moved back and forth twice in those four years)

It was Fayetteville now that I think of it. when we lived in this beautiful old home on E. Genesee Street that had been at one point a Bed and Breakfast.It had a pond and a statue of Neptune in the backyard and the old black walnut trees. The front had Grecian Pillars- it was really a majestic huge old NY home.

Funny just the other day I ran into my old neighbor and friend, the host of a cable TV show that was not in this market but aired on cable there. We wrote letters back and forth during those years.

YET when I ran into her she gave a hello but I wondered if she even knew who I was as she was so NON Personal! I mean it seemed weird to me to have that "Someone I used to know sense"
with someone who at once I shared such emotional intimacy.

It was so weird to me. Typically if I have been close to someone EVEN IF YEARS go by there is that closeness.

OH SHIT I was supposed to respond to an email to Pastor by 9AM

I wrote long hand the focus of our congregation- just brainstorming. But I came on line to send the email and meant to only , I don't know... edit? capture some thought?
(likely not even one I wrote.. ha )

and I just got caught up going where the writing led me...

OK. Back to the day at hand now.

Respond to pastor.
Check finances ( did the deposits made finally clear? The ACH go through I am waiting on?? I did receive a random check from my old insurer! The Affordable Care Act MANDATES a certain percentage of premiums go direct to patient care and not marketing or other overhead ! CIGNA did not comply so had to cut a check to all who bought a marketplace CIGNA policy. I got a couple hundred from them- as it was their true up to remain compliant!)

Waiting for my true up of all the ACH to clear ( I did not yet cancel Netflix but that goes through on the 15th and THIS TIME I have the money in there! I may land a job by then I hope but hey at least have a tenant so maybe can keep it anyway.!!)

SO today:
true up finances
Run a real budget again ( with tenant and actuals of money from the part time job which is back to every other weekend. Summer surge of filling in for the full time gal is over. She took Mondays and Fridays and enjoyed lots of short mini vacations!)

AND once the teen is up either paint WITH HER or just get the priming part done. She wants to do the color painting! I will happily prime for her to get the project moved along.

This kid is CLEARY Gaming addicted to GEnshin Impact. She said she had to just "get the dailys" done ... and I pointed out the compulsion to do that FIRST THING before anything else is a result of the design of the game WANTING you to be addicted.

She said "But it doesn't take long" and I said-
SO why don't you make a to do, hit it and get other things done and leave that as your reward when done? then play some of the game?

But she had eaten breakfast and logged in and acted like it would not absorb her day and hours later was still on the TV but had stopped the game and was watching Lord of the Rings.

Total Escapism,

I am leaving her alone. I watched my brothers do this as teens and they all got out of their phase of playing games and missing out on other things eventually in their own time.

So letting her be for now.
I don't have the means really to do otherwise and see she has notes of her to do on her desk ( caught my eye- was not snooping just saw it) so it appears she is making a to do and listing goals. YES That is progress and she will figure it out one step at a time.
I did not read her list but saw the first two items were TWO Places to apply for jobs-- they just were seen.
I respected the privacy and did not read further.

* Think that important!!

This kid HAS A job when wants it at the retirement community. Does knowing you have a job the moment you WANT It contribute to not working? I think perhaps it does.
She apparently is not motivated to earn money yet. I am not going to judge that as she does have a place to live and food and a safe home and maybe there is somethign to be said for hanging with family in a safe place? Why not as long as I can provide.
And why would that be a bad thing? I don't really get the resentment of some when they have kids then feel like it is a failure if their kids are still home.

This kid too is CLEARLY not social. She is likely just also undiagnosed. So it is what it is and she is who she is.

She will figure it out. I suppose some want kids but not really for the long haul? Just to launch into the world not really for life?
I don't quite get it...
I think it dysfunctional to NOT want and to THWART growth and for ones kids to go out into the world but also think dysfunctional to PUSH kids into the world when they are not ready. Those kids then fail.
The either fail out of school , if pushed to college when not ready... some just wild out and have no self regulation skills whatsoever yet...

I figure the time for these two to figure out what they want to do in life and next steps is OK.

This kid is not impulsive. She has to carefully consider and plan. So I feel like until she has some clear vision of what she wants to do she is just doing Nothing rather than fill her time.
Its a different approach than mine and certainly different than most but not necessarily a bad thing. I mean time is just time. There is no rush really in growth. WHY?
Why does it matter if our kids go off to school at age 5 or 6?
Whey does it matter if our kids finish high school at 17, 18, or 19 or older?
Seems really insignificant frankly.
Now my youngest JUST turned 18 this August.
She was 17 when graduated. So I do think about how she was always one of the youngest students and maybe just needs more time to figure out what she wants in life.

Pehaps more should take time to be more deliberate. Maybe we would have more focus on things that actually do bring joy in the world and less focus on money making as the end all be all. Maybe our world would actually be a better place.

I don't know..
but I a going with trying to take care of our home, the people and the enviroment we are in. Really focusing on this space and place. And letting them just BE and come into their own here first and foremost.

I feel like early years these kids did not have stability. We moved every year and a half since the birth of the oldest of these four youngest ones of mine. Alot of moving around.

They were nice houses.
But there was so much volatility too.

So yeah I have to reflect on this once in a while and reaffirm this is OK where we are at just now.

Yesterday I really enjoyed a lovely talk with the Program Director of the Arts ORg. We have an event I had to go pick up signs for that I put at the edge of town so when folkd drive off the highway into our little town they see the signs.

It was so validating to talk with her. She was so affirming and encouraging and it was really immesuarble valuable for me.
I think that is what I had to just capture.
There are folks here in my communuty who WILL Apprechiate us if we focus on home, then our own little town to be fully present and participate in it.

I think it important to really connect where you are.

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