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
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
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-
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.
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"
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
and I just got caught up going where the writing led me...
OK. Back to the day at hand now.
Respond to pastor.
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.!!)
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-
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.
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.
* 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.
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 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.
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..
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.
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 it important to really connect where you are.
Happy to have volunteer work today that will be fun. - 2022-10-08
Its hypocritical to act like you are holier than thou and sanctimonious when won't support your own kids. - 2022-10-07
KEY IS start moving... then stuff happens. ; ) - 2022-10-06
Life is good overall - 2022-10-06
It was a productive Day! NO PAINTING DONE- but will make some dinner THEN maybe get it done! - 2022-10-04