2021-11-15 - 7:48 a.m.
CRAP I am rather sure the ADHD moments of the week that took the cake were not mine last week.
NO one household dweller of mine wins for having messed up Urine testing ( I am pretty sure) with a mistake. I will have to find out when they wake BUT
I am rather sure my adult kid did not read the instructions for the diagnostic samples needed to actually identify the Mast Cell Activation Syndrome via that diagnostic tool.
They were supposed to do this test YEARS Ago... but it was nearly impossible then as frankly the early adulting kid was barely functional and I was working full time out of the house at the time and short of being the one to go make it happen- as an actual medical care aide- that test was just NOT Going to happen.
HELL NO my child (this is the autistic super high functioning brilliant but stubborn and at times difficult kid) was just not doing it. They actually were not resistant- they intended to but couldn't follow through at the time. They SAID they would do it- but honestly again the executive functioning challenges and chronic POTS that was super bad then meant no way it was happening without help.
It doesn't seem THAT complicated- just pee in a container, right?
Well logistically if you bedroom is on one floor and the pee needs to be refrigerated-
yeah that makes it complicated for a disabled person having trouble navigating even getting out of bed without fainting or feeling like puking etc...
Which is what severe POTS can be like at times. Its a migrane from standing...
other weird things that don't happen ALL THE TIME for many with POTS but sadly occasionally flare up.
SO this emerging adulting kid is doing SO WELL physically now thankfully while actually being responsible for self care.
I am currently bringing the last of my clan in for testing... as the youngest clearly is in the same genetic club of having whatever causes this POTS in my family. Truth be told it is so time intensive to take each person to all the testing required to get a diagnosis that it was untenable for me to do so for more than one at a time. So I basically had to TRIAGE- WHO is doing OK in life? WHO IS NOT? WHO NEEDS HELP and is not getting enough to function without medical assistance? Can it wait for others? So if a child was functioning, getting to school. and had gone to the regular Dr. for the annual physical- well good enough was good enough. ( The regular pedestrian never caught POTS, or frankly suspected it- it was just assumed ADHD and asthma. OH yeah- that inability to breathe after running? Not asthma all the time- can be POTS related lack of blood flow... constriction of bronchials as well, distinct from inflammation! So the autisic kid who swore it was not asthma but felt different all those years WAS RIGHT and doctors and every one else did not understand until one did.)
Obviously it was what ailed my mother; and her mother before her.
and me to a much lesser degree over the years so NO SURPRISE once hit puberty the youngest hit the same wall of symptoms hard.
My youngest certainly was depressed. So it was not obvious at first that she too has POTS.
It was when I brought the others in for allergy testing and wanted her to go too- that I felt awful when the results came back that she had WORSE allergic response than the siblings and I had not realized.
(This is likely why the rant of these two kids calling me an awful parent!)
But this youngest child of mine is not one to complain. She is the ultimate minimizer
OH this same kid did realize they were very off in that reaction. I did get an "OH SORRY" eventually and after that explosive moment they SEEM NORMAL AGAIN Since.... yeah that is how it happens. This is all too reminiscent of my marriage but has not happened in SO LONG thankfully that although a red flag not much more I can do to try to help my kid get an handle on their being-- as have a Psychiatrist they see... four Dr's who are medical experts.. and my kid is under EXCELLENT MEDICAL CARE
BUT back to the ADHD MOMENT OF THE WEEK That takes the cake:
I would call it the explosive dinner episode on Thu night-- but no ( That was SOME OTHER Psychological illness moment... not sure WHAT IT IS... could be a few things...)
NO the ADHD moment is what led up to that The poor executive functioning on NOT READING THE DARN INSTRUCTIONS for the Urine testing to fully understand them to begin with,
BUT -- now this is the ADHD problem
NOT recognizing the lack of understanding thinking "I got this"
then proceeding COMPLETELY UNAWARE of that you missed.
The brain can read and then just *POOF* some things get lost..
and in a list of TO DO
Its more than the extra screw sometimes after assembly.
This is where life for the ADHD person gets super tricky.
And there is such challenge on top of that memory issue- the void of things STICKING in the brain..
HELL alot with ADHD also likely have undiagnosed POTS and other actual chronic conditions...
THEY WERE BORN THAT WAY.
(Environmental trigger just kick in a genetic trait sometimes... other times the way someone is will be such regardless...
ACTUAL SCIENCE shows that there are distinct differences in the brains and in the biochemistry and levels of hormones and actual size of parts of brain (the science in the medical journals was reading was beyond me but I get so sick of folks trying to make WHO A PERSON IS some MORAL issue
I think that is fucked up when one has all these other medical issues that are INTERRELATED
The estrogen and testosterone levels affect ones health and these other things too.)
BUT I DIGRESS....
The ADHD MOMENT OF THE WEEK...
GOES TO the kid who stopped all meds for that darn urine sample
( I cooked the rice wrong, remember? I mean I thought is was ridiculously funny in a way how nonsensical that reasoning was..... but still... I cross checked with a cook just to be sure this was not some high falutin US base only of course fancy thing... we like fancy here... as I would have given my kid that knowledge when debunking their myth you know if it were somewhat true in this bubble of a context of the entitled.. that it may be BETTER for the upper class who need to be better than everyone else... but when a cook at a 5 star restaurant says "Ummm.. NO.. You can thow rice in and stir fry it at any temperature"
Well expert debunked your insane need to be right kid based on one thing you read on the internet once.
and I suppose is my ADHD MOMENT as well as I SHOULD HAVE KNOWN BETTER THAN TO TRUST MY KID GOT THAT....
I am the driver to and from Dr. Appts. I have permission to schedule( as my kid needs help with .. you know just GETTING IT DONE...)
I actually also have power of attorney my kid DID sign paperwork for emergency power of attorney which when one is disabled is a REALLY GOOD IDEA
so I can make decisions in emergency.
I SHOULD KNOW To check any medical instructions at this point- to ask to be sure they are understood. My kid DOES ask me to attend appointments to be sure gets it right for some things- but when not ASKED I need to be more proactive in offering and even insisting on such help at times.
MY kid needs this but does not know they need it.
After bringing in the youngest, she too was given the medical packet for blood work and urine sample.
Now its the SAME Testing, for same conditions..
and this time I have the packet so I read the instructions:
TAKE TWO SAMPLES EACH FOR 24 hrs--
TWO samples- over 48 hr period!! SHIT
That is why my kid was given TWO recepticles. The oldest said "The second was if I needed it- if the other doesn't hold it all"
I had asked "Are you sure? I think they need two batches- one for a control and one to put a solution in? That is not what I heard when at the lab. I heard him say he didn't HAVE the stuff for the test but would order it. So I think you are supposed to fill both containers?"
I was close... I had not heard or caught onto TWO 24 hr periods. This is for my emerging adult ; attempting to adult; almost but not there yet child who is handling appointments and I am only let in when they want me let in- so I literally did only overhear. I was not part of the conversation.
SO I am now reading instructions to prepare the CHILD who is a minor I am going to guide through this
DARN The order is for TWO 24 hr periods of urine.
THEN DO IT AGAIN.. SHIT
My 19 yr old quit ALL MEDS and took sample ONLY for 24 hrs.
This so sucks
I AM SURE my kid took their meds ...
unless by some stroke of luck their ADHD kicked in and they plum forgot..
The 19 yr old needs another 24 hr period of samples.
What a pain.
I will read the instructions and make the 19 yr old sit and listen to get it right as doing it themselves they GOT IT WRONG but NOW I HAVE THE PAPERWORK IN WRITING
The instructions DO NOT SAY STOP ALL MEDS
just "stop any antihistamines for the two 24 hour collection periods".
If got that wrong TOO then have to do TWO new samples! If they got that right it is only one more... so not that big of a PIA...
will see once they are up.
MANAGING a disability actually is like a JOB. I mean going to the Drs. keeping up with meds etc.
It truly is alot to manage.
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