2022-07-12 - 9:01 p.m.

Well, I can't afford therapy right now. Its $146 for my co-pay for the therapist I found!

They were charging $112 so I asked to check that it had been run through my insurance. They did so and basically the medical provider company (the therapist uses some on line portal) checked with my insurance and based on my spend thus far and the deducatible said "Aplology we underestimated your co pay. It is $146."

I have, I think a $4000 deductible or $4500? Something like that- so I have to pay to contribute until that much paid for out of pocket in a year BEFORE They cover even this basic mental health support.

Idiotic. Why have a health insurance policy at all when paying $300 a month for it if the darn policy doesn't cover basic healthcare?

For me however it is still worth it due to the OTHER medical issues of my kid on my policy. But it still sucks -
especially when they deny coverage and are bold enough to do so saying
"The diagnosis says gender dysphoria. We don't cover that."

I never got any response from Anthem to the letter I wrote challenging that decision and pointing out the actual Virgina law.

So I just scheduled the remainder of immunotherapy allergy shots for my youngest.

I am glad she is still on her Dad's health insuance and can get that medical care. Her shots have a co-pay of $11.50 and she gets them twice a week.

The more I read about allergy immunotherapy the more I think it was a really good decision to bring her to get that done.
It is a PIA to have to drive to the allergist office twice a week. Its about a 30 minute drive there and back, and a good 30 min in the office. You have to wait a bit before leaving- 20 min I think? I bring a novel and read.

But it should make a significant impact on her quality of life EVENTUALLY, After a point she will still need maintenance shots but only a few times a year.

Today was meeting the allergist for the other kid to review results of biopsy. Unfortuantely the results of lab work and that resulted in FURTHER tests that the Dr. wants done as lymphocytes were high.

https://my.clevelandclinic.org/health/diseases/17751-lymphocytosis

So more testing needs to be done. And we have crappy insurance.

I think this result today of the preliminary test of biopsy which was "inconclusive" as the mastosysis (suspected my the allergist) produces rash with cells that are not identifiable ( not known!- so not known if cancerous or benign.. I mean the dermatologist that ran the biopsy to the lab got back "inconclusive" and the lab wasn't sure what the cells were to be honest. This allergist an expert in mastyocytosis who when she saw the rash on my kid identified that. She gave us her research article and said she wanted the biopsy to run test to screen to try to ensure there are no other underlying conditions causing this rare disease.

https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/symptoms-causes/syc-20352859

I swear this kids Dad dropping them from his insurance because he is not supporting their trans identity-
when his own kid is in need of serious medical care due to rare illnessess
and needs to be sure there is not cancer

(Although frankly the only difference between cancer and the other chronic illness in relation to life is not about quality of life but about LENGTH of one's mortality)

I mean it just sucks to be a kid who is getting that message from their parent that their parent cares less about their own child's ability to actually live than they care about their own views.

I don't know if this kid can or will ever forgive their father.

But I feel sad for my kid.
Cause it is sad.

I mean it took us freaking MONTHS to find a dermatologist who took our crappy insurance as it is to get the biopsy done

So the next step is a Gastroenterologist to run a test ( or tests?) the specialist wants done. And an ENT to run other specific test.

At least the local medical doctor in town IS GOOD and is happy to act as primary care provider- and wants to learn more about how to provide the best care.
My kid was so relieved and happy and impressed that Dr. Actually asked questions and real time was doing research to learn about the endicinology of what has to be checked to ensure when taking testosterone what other blood work has to be done and how to ensure all is balanced.

It is interesting that for some reason the taking of testosterone really helps the POTS and EDS symptoms. Inflammation does seem to be down and chronic pain mitigated. But the rashes are still there.

It was nonetheless a good day as this kid saw the excellent allergist who is so freaking good. I mean how lucky she happened to have done research and published on this weird disease that no one else knew much about? There are a few allergists around so very glad picked her office AND that when we switched our insuance she also took the NEW insurance.

So ENT for both kids--- finding one for the youngest was already on my list.

I need to find one that takes BOTH kids' insurance! ( the one is stil covered by her Dad's)

So it is clear I STILL need to be available to shuttle kids to specialists to figure out how to best treat their unique health needs.

Something has to manifest that will allow me income as well as abilty to get them to the Dr. appts.
In other news after taking the one to her allergy shot appointment yesterday we stopped at one of the places in town that has a "We're hiring " sign and she actually walked in to inquire about a job. They told her to find the job applicaiton on line to apply. I see that as progress!

My older kid said to me after their appointment when I drove around town with them and said "Let's just see who has "we;re hiring" signs and also just scope out what businessess are in these office buildings. You could just come by with a resume and walk into one of these office buildings and stop at each office and hand your resume and let them know you are looking for work and inquire if they need any help"

I was thinking a reception job- not very physical and sitting all day, might be managable for one with POTS who can't physically exert self.

Exercise in fact seems to trigger the lymphocytes in some... noticed that... and that makes sense actually ... the overactive immune system response that happened when my kid would run that my kid said "This is not asthma, as I know what asthma feels like"
but the throat closing- almost like an anaphylatic response of allergy in response to running of throat itself swelling rather than the bronchiols inflamed making breathing labored as in asthma--
my kid mentioned that today that every nurse practitioner did not listen and thought it was in their head due to resistance to the normal discomforts of exercise.

It has to be frustrating when one actually has a chronic illness and others act like it is in their head.
I get that.

But it is hard to not want to see them try to still do things while living with chronic illness. YES the things are HARD to do, but I still think if going to live in, and live with pain that having stuff to do to keep mind active to distract is perhaps better than beign idle. At least for me. I am more acutely aware of and therefore actually IN MORE PAIN when I am still. This is so true of the joint pain which for me I am sure is athritis ( runs in my family).

The older sibling is more determined to be active despite the pain. She just landed a part time pizza delivery job thankfully as her summer job is only part time and she really needs the income. Good for her! One kid to not worry about as she has work and a new apt and starts teaching this Fall with her own class in an elementary school! She did get a two bedroom apt in a secure building. I am sure in time she will find a good roommate and that will make it much easier for her financially. She is still in an AirBNB until the move in date of the new apt ( with stuff in a storage unit which thankfully in the city she is living in was reasonable. Here where I live the cost of those is just ridiculous!! I mean outlandishly high as there are not enough of them around. This is a reason June always hustles her friends to try to get them to donate storage space for her stuff in their attics and basements! Her things are scattered among others' friend's homes!)
* Although I think there is a good fanciful story line there...
I mean the secret life of June.
Drug smuggler...
or Jewel thief...( I think it would have to be a sexy story of one kinda insired by the classic Steve McQueen. then remake Pierce Bronson- Thomas Crown Affair)
Or SPY....

or better yet ALL THREE

I still think if I ever have time I could invent a marvelous story inpired by her gypsy lifestyle...

and all its quirks.
Never using electronic anything. So no trace or tracking....

I would imagine she even could have a fake persona.
Her name is not June at all, and she isn't from where she says she is from... etc.. etc..

Pays in Cash only
Totally is off the grid.

Mysterious---- so WHY live like that?? What ARE the secrets behind such secrecy and obvuscation of leaving a trail behind you of bread crumbs showing where you have been??

HA HA

OF course this is just fun conjuecture. June like everyone else has been on social media. BAM! There are all the breadcrumbs needed to piece together a life...
I mean
there IS NO SUCH THING AS PRIVACY or secrecy anymore.

Goodnight... that was my bedtime story-- HA HA the fantasy of the mysterious June...
I can fall asleep with fanciful stories fleshing this out.

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