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2023-01-12 - 8:19 p.m.

I feel so much better about my relationship every time I actually TALK to my DC Guy.

That is the way it works...
for sure for all of us.

We did have such a good time last Sat night and yes he was an ass when distant on Sunday night. I didn't think to mention it as honestly when he called to talk tonight I just listened and we talked of what we are both up to and weekend plans.

May or may not see him depending on how the weekend goes but not likely.

My car is crap I will be using public transportation to get around.

His car died yesterday

He picked up a rental today and will be spending this weekend car shopping as well as moving! He has a new place.

I do not think he wants or needs my help. He is pretty organized.
He also has some plans with friends.

I have volunteer commitment ( in part as it does seem like an event that he invited me to join him at LAST year and he mentioned how much he and his friend(s) enjoyed it in past... including his roommate and in fact he brought my bestie to one of the dance parties

I had forgotten that but when he first met her it was just before the weekend of this same health wellness hippy convention

and he invited her to the dance party

So I have heard about it from a number of folks

who allst enjoyed it

I honestly feel better after having talked to him

but realize I am just very TIRED and also fighting not feeling down from the general malise of my HOME VIBE

I mean the vibe here is not BAD


Low energy

Hell this is what life with POTS is like.

It was hard to see one kid with it

Then two

But when the whole household has it and struggles I swear it then makes it harder for me the SOLE anomaly of NOT being chronically ill with it
to remain really positive when in constant caregiver and homecaretaker mode.

I mean the reality is they do cook ....sometimes....

but not that often.

and they BAKE sometimes...
but again once a week or so.

So that is their contribution to everyone and on occasion someone else with do some grocery shopping.

BUT exceedingly rare in recent years. ( When younger one went all the time consistently actually. I was pretty spoiled then as would give the kid a list and even though she always bought other stuff too it was wonderful. The worst thing she ever did was buy fancy expensive cheeses! HA HA so I couldn't really complain. It was the one little indulgence of the kid who was never asking for anything at all. My rule was if you do the shopping I give the list and the budget and the kids could get a few extra items of their choosing - whatever they wanted.)

So since the one kid gave a YES to going to the laundromat but then reneged as got too tired ... while I was WAITING to see if the other was going to come too ( I did not expect the 1rst to bail)- I figured go to the store and pharmacy and take care of those errands.

Got that done. When I filled out the SNAP form I put the college kid on there with the note that the kid was to be home for breaks in OCT and then in winter ( about a month break)- and that they had diatary considerations so I really appreciated help so could go get food the kid can eat. All true! SO when the college kid has been home, before going back at each visit ( over the Fall - since got SNAP) I have taken the kid shopping to stock up on items the kid can eat. They only have a limited food plan at the school cafeteria ( the smallest one possible to buy when live on campus).

Cause with the medical issues it is harder to eat at a school cafeteria. The kid can't process greasy, fried food, has food allergies to many things ( sadly rice being one. This kid loved rice! Cheese is the # 1 fav food.)

SO basically 1/3 of the budget for this month was spent today only. I picked up just a few things for the rest of the household and went with a list of items for the college kid.
LOTS of really HEALTHY things. I mean the kid has been eating like a rich kid this year only. It is ridiculously ironic. That when I am economically strapped at this point the food we can now get from SNAP is nutritionally much better and much more expensive that what I used to be able to afford to buy, I mean when you buy healthy food $200 does not go nearly as far as when buying crappy processed food in bulk at someplace like WalMart!

I don't get those folks getting all bent out of shape when someone on SNAP buys salmon or lobster or steak. Should poor people NOT be allowed to ever experience eating such wondeful and healthy things once in a while? FUCK that.

The same poor people buying that and feeding their family that also for MOST OF THEIR LIVES held jobs where they spent their money paying taxes, donating to places that helped support others and often were the most generous when others were in need.

It is factually true.
Studies show that it is the working poor who are donating more CASH to charities than the well off wealthy.

No kidding.

So yeah it actually felt good that despite the challenge of not yet landing a full time job, the blessing of SNAP allowed me to get healthy food for my kid with crazy gastrointestinal issues due to POTS, major food allergies, and systemic inflammation which exasperates the POTS/dysautonomia EDS symptoms if does not eat well.

So I got lots of high protein, low carb grain free, low gycimic index foods that the kid asked for.

The kid asked for instant oatmeal for breakfast. This kid ALSO will be taking the bus to student teach a number of days this semester and needed food to pack. I bought things like Kodiak brand oatmeal, lara bars, almonds and dried apricots, small applesauce containers. OF course a block of cheese! ( That is the only perishable the kid has to remember to take out of the fridge when leaving with Dad).
I did pick up some of those Hormel microwave meals and the bad thing about them for most folks is the high sodium which POTS folks NEED.

All those things are expensive. These are far better foods than the Ramen and Mac and Cheese I swear the kid has lived off in past years!

Thinking of the criticism of folks on SNAP buying lobster.

I also say fuck that haters.
BECAUSE I worked for Verizon and Fannie Mae and other large companies in jobs of services that many Americans use and need over the years for many years where my paycheck that came in even though YES a decent salary on paper, once paid the motgage and ESSENTIALS ( and this did not include eating out! NO it was for years CHILD CARE so I could work as a single mom for example)...
honestly my food budget was then the LAST of essential bills. I paid everything else and THEN did the grocery shopping
and for many years RICE And BEANS and TACOS were staples in our home
as were LENTIL or chicken soup with biscuits
Pancakes for breakfast ( a cheap way to feed a crowd)
Eggs, Eggs and more eggs ( not to ever complain as I still thing eggs are the best food to get bang for the buck next to dried beans!)

But I mean you all... working poor and even working middle class and even working UPPER MIDDLE CLASS at times are not able to afford to eat out, have homes with FOOD INSECURITY ( I swear my kids have food issues and some because of this sense of scarcity and fear of not having enough because money WAS tight and while I got NECESSITIES there was not anything EXTRA or at times no CHOICEs.... and you know it turns out all those years of serving rice and beans

and this one kid I shopped for today


I mean years of no one figuring out actual food allergies
cause saying her stomach hurt and asking the Dr. About it

no one ever figured it fucking out.

SO yeah that kid was a bit angry once it was identified she has massive health issues


more than others.

*I swear I worry there might be a mold issue that contributed to the health issues of my kids.

Heck this rant will be worth something if I remember to buy a mold test and just check.

I never actually DID THAT.

I do know I DO NOT see mold growing in the bathroom sinks quickly like at some point after that construction work was done it started to happen! I mean it was OBVIOUS Then that the opened up wall did have black mold. I cleaned it myself and then cleaned the heck out of the surfaces in the home regularly but it was for a time there growing in between cleanings in the bathrooms. It was not happening BEFORE That damn door project and opening of the front foyer to rebuild and remove rotted wood...etc...
that was YEARS AGO.

So I cLEANED to mitigage
but I never did a test. It was like I KNEW the issue and knew to get ammonium chloride and clean every freaking thing ( cause we did hire a mold expert to do mold remediation in the old stone farmhouse rennovated years before).

But all that crap in the environment makes me worry it DID impact health so I really SHOULD get the home air tested to be sure it is not STILL HERE.

** OK on the TO DO

HARDWARE STORE- mold test AND a new flapper for the toilet.

YEAH another plumbing issue. The toilet in my bathroom broke last Thu. It just stopped flushing properly. Last Sat I looked under EVERY sink in the house as I had bought an extra one and had it hear for a good year or two. It was sitting on a shelf and I knew EXACTLY WHERE IT WAS - but it was in the living room.

SO of course when I was cleaning and preparing for Christmas I had to move it. And of course now I need it.

And now I can't remember if I just gave it to the plumber to use and if that is what he used to fix the damn other toilet.

Well that would be crappy as I hired the guy to stop THAT Leak AND fix the damn broken valuve that he never fixed. I looked at the job he did and wonder if it wasn't the other flushing mechanism but the flapper broke as when I looked inside that toilet last weekend it suspiciously looks like that is the SAME DAMN BRAND NEW PART.

I'll be damned. I think perhaps I left it on that counter

but called the plumber rather than do it myself as I thought it was THE OTHER PART broken ( which I did not have) AND I knew the VALVE was also shot.

I feel like I was perhaps an idiot. YEAH I did not pay $900 which was the first freaking quote to fix the toilet. ( Or was it $950? They wanted to pull out the whole damn thing) So did not fall for that nonsense BUT I may have been just LESS Of an idiot to have called them for that toilet job in the first place without FIRST replacing that $5 flapper myself to see if it resolved the darn trouble!.

I thankfully will never know.
(Unless I find the new part? That is the only way I will KNOW it is not in the other toilet)

But the thing is those get signs of wear. They get grungy looking. And it was the Korky brand I had on hand with chain

and that is what is NOW in that toilet.


the mechanism in my bathroom is the apparatus that is one of those fancy things to measure and use LESS water- just what you NEED to flush to SAVE WATER

cause the water rates are so damn high here. I put those in all the toilets years ago and installed them myself then. So they did last a good run.

So I need to go to the hardware store now too and pick up a flapper and pulll that fancy thing that broke out and go back to the simple one. (OR buy another fancy one to save water. I just don't know if I am up for a complicated install and the budget is tight. I mean if I save on the water bill YEAH worth it- but honestly I haven't the energy in this moment...and want to spend as little cash THIS MONTH as possible)

SO on the list for another day.
If I write it I will do it- so this helps me to just get it down!

Speaking of which the to do.
I also have to schedule follow up with kid with allergist. The allergist was on vacation. GOOD FOR HER
She is a great Dr. and deserved an actual vacation.

The kid also had wisdom teeth out- so there was a break in the immunotherapy

Week of wisdom teeth, week in PA with family there, then the next week the Dr, on vacation.

OOPS I should have brough the kid in yesterday or today! I need to schedule that tomorrow. The thing is we can schedule allergy shots on line so those I get done as of course think of it at 9 at night, right? BUT The DOCTOR appointment which the kid is due for to evaluate the effectiveness of the treatment
has to be scheduled by calling the office.

I just plain forgot about it after we got out of the routine.

I was thinking

YEAH Maybe it is now time to get back to work. The three times week Dr appointments have abated. Kids are all more medically stable ( EVEN if sedentary! Even if there is some depression. HECK one of the adulting ones is handling their own care and I am pleased to report has acknowledged and addressed even that! YEAH One is Not depressed ( just POTS symptoms) The 3rd I think DOES have depression but chooses not to treat at this point. Nothing more I can do about that. Flat refusal to let me help by scheduling an appointment.

SO once I help the kid take care of the immunotherapy- which honestly I needed to be around for to drive there weekly
and the POTS is stable

Well then it is time for me to get a job and go to an office Mon through Friday if that is the option that presents itself to me.

My work here is done if I can't do anything more for these young adults.

That is really what it feels like.

The ones living here DO NOT WANT MY HELP.

So I can't help them.

Time for me to move on in my life

with the next phase of my goals

Even though I don't really have an empty nest. I don't need to sit on the eggs any more so to speak- they have hatched.

They can go out in the world when ready. I just have to keep providing the nest for them- which I have to do for myself as well

so that is that for now.
It is basically the obligation I have at this stage in life but there is really quite a bit of freedom to find the next growth opportunity for myself when I think about it.

But for now- off to do laundry.
AndI feel better having talked to my guy. Connecting with ANY adult friend really does wonders for me.

I mean I live home but interact really minimally with the adult children here who are sleeping so much of the time or who just want to be left alone and act like I am bothering them if I try to interact much of the time. They are really quite rude to me frankly. THAT IS NOT HEALTY

But it is what it is and I know in time they will learn better social skills

or not
with others

but it is not my responsibility.

I just address moments of rudeness and call it what it is and move on. Try not to hold a grudge about it. Try not to take it PERSONALLY even thought I swaer they would not treat anyone else in that manner

well maybe not true
they were rude to my guests

HEck I just read somethign about PANS/ PANDAS

and how personality changes and ocd like behavior and all sorts of nurological problems result and contribute to erratic empotional contraol and behaviors.

One of these kids used to get STREP OVER AND OVER AND OVER AGAIN

I mean like Every year

but also got that would have kicked that illness too. But sometimes kids with POTS end up having PANDA or PANS

IT is rarely diagnosed in older people but adults too could get it and it can have been present for years but missed.

Just a thought to ask the dysautonomia specialsit to see if they sceened for it (Althogu I bet that YES of course that expere SME would have done that. )

Just random thought
I mean cause I suppose I want there to be some actual evidence of nuriological inglammation causeing my kids being assholes.

I mean they wer not always assholes

and they were not always sick

So perhaps it is a causality

and the inflammation elesewhere is also in the part of brain where there is emptiaonl control

I mean it only makes sense.

Not that it makes it OK for them to treat me like shit

BUT for some reason it makes me feel BETTER if they don't WANT To be assholes to me but somehow are unable to control it
just like they could not cotrol all the other pain of their body o r the fact hey have ero energy

I mean the one kid said YES maybe in aabout an hour thinking after getting up and eating they would get some energy

and I think REALLY DID Want to go get their laundry done too

BUT just did not have the energy to stay awake tonight to get it done. And that was after SLEEPING ALL DAY

I mean I don't know what time the kid fell asleep.

The other kid said she fell asleep at 8am yesterday when yesterday she did not want to get up during the day., ( I think that was yesterday) Today she again has been asleep all day long. AND STILL ASLEEP

I mean they fall asleep and sometimes sleep literally 15 or 17 hrs straight. YEAH That happens with POTs. Other days it is more typical of 8 to 10 hrs.

I understand this as I had times when hell yeah I crashed and awoke 15 hrs later. It is like a time warp.

AH I guess one sleeper did wake up ... just stayed in bed. That is the other thing that they do. They awake but don't GET UP That is the thing I think is NOT good for anyone's health.
OK so it is what it is.
I can't influence of help or make it different at this point.

I just have to accept it being what it is for now.
And try to keep being positive as I get the things done that I have to do

I think of the old guy at the retirement community who said

:"Its not a matter of whether happy or not. you just DO It."

and there can be a peace in that acceptance without trying to change things other than maintain and take care of daily responsibilities with care.

I mean focusing on being attentive in the moment and wanting to do even the most menaila tasks with care is really what the overused mindfulness philosophy is all about.

Just being fully present where one is.

ENGAGED Where one is.

So I guess tonight I felt peace as did that, even in the waiting.

I did something different and it was fun. There are these little Star Wars figurines in an Advent wreath thing- idea-
one figuring for each day of advent to make. Little boxes in the calendar to open and pull out a lego project. When you put them all together you have a scene- with the box as the backdrop.

I picked it up at a thrift store after Christmas one year. I never gave it to anyone in particular and found it this year. So I brought it out for the whole household. The kids said they would do some of them. They seemed to like the idea but no one started.

UNTIL today, this evening in my waiting. I really did want to wait as late as possible before going to the laundromat- just in case ...
cause it will be easier if everyone does their shit all at once.

(I think, And I DO like their company as it is one of the times they ARE ALL PLEASANT! Seriously they all help out and do their own laundry and it is NICE! and there is a great pupusa place right next door!)

I mean for $4.50 not even kidding, I can eat an awesome meal!! I was astounded at the bill when I treated myself to a pupusa some months ago which was served with a half plate of lovely tasty homemade slaw and I had a aloe vera drink as well. I NEVER Eat out and that was the one time I did last year!! IT WAS SO AMAZING to me!! The laundromat is in this strip mall DESIGNED for poor people! Literally cheap ethnic foods, the county job resource workforce development center where you can job hunt and get help with resume or training classes , the community center has a satellite with classes including ESL, the Latino market with the little restaurant, the Italian deli, the Peruvian bakery, auto parts store, a 7 eleven across the street where the day workers gather to pick up jobs in the early AM, a decent thrift store which funds a federal program that funds a local homeless shelter and provides some jobs to homeless, ( That is where I did all my Thrift store Christmas shopping).

ah but I digress, again...

I guess enough waiting. Meant to say in my waiting I put together some of the lego figurines and it was really relaxing and lovely! HA HA I got four of them done.

This is the first time in my life I have ever played with Legos! HA HA

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