2022-11-14 - 11:30 a.m.

So the plumber can come tomorrow between noon and 4pm.

Kid has a medical appt at 1pm.

It took MONTHS to find this specialist that takes the insurance I purchased via the Marketplace.

They don't take Medicare.

So I am FORTUNATE that by hell or highwater I found a way to pay that Crappy Anthem policy to keep it active.
Because we did not yet get the letter to know that Medicare was approved for the kid with chronic disabilities.

So since I paid for NOV the kid can see this Dr.

The kid won't consider taking the bus as convinced it is too much exerction to walk to the bus stop ( its two blocks from home) and take the bus to the Dr. office ( which would be a walk too... not sure how long cause my kid was not even open to looking at the possibility).

The thing I find disappointing is my kid calls me abelist for even suggeting the idea.

The kid thinks I am abelist and not listening when they say that walking makes their POTS worse and they are then unable to function.

I recall however just on Halloween this kid was walking to a friends house ( further than the walking this would take) and I offered to drive the kid and they said NO. Hmmm... They did fine then.

So from my perspective the limitation is in my KID'S HEAD.

Some mental block ASSUMING they will be knocked off their feet and unable to function based on what walking did to them YEARS AGO. And all evidence indicated that would not happen NOW as their health is improved from years ago ( based on the Doctors test results of last year... true the kid did not yet go into see the specialist yet this year BuT that appointment is this week as the POTS specialist DOES take Medicare.)

SHIT I just realized I better call to find out EXACTLY what that means- what the out of pocket costs are to be.

I mean the specialist runs CRAZY Amounts of tests. It is not unreasonable as they are helpful- yes seriously helpful with POTS /MCAS/EDS.

To have the annual check up is recommended when STABLE which is what the Dr. Said this kid is-

YES Will be chronically ill and have this for life but may not have symptoms as bad as they were in past (hopefully) OR MIGHT. But to ASSUME that the bus is not feasible is to me a clear assumption and it is certainly not ableist to point out to my kid
"But you have not TRIED it yet. You can't KNOW if it manageable or not unless you TRY it."

But you can't force someone to see that the stories they tell themselves are just that-

stories
to justify their decision.

I tell her- NO it is not abelist, my suggestion you try this is based on OTHER disabled people discussing their experiences as well! ( And medical science- I mean it is KNOW if sedentary health problems INCREASE. Sure exercise intolerence is a thing and YES even walking may be taxing and akin to running 5 miles for a person with POTS BUT the avg person can run the 5 miles and RECOVER SURE they might have a day they can not move legs! But just like the AVG person has that day of having to rest and being out of commission at times- they still benefit from the exercise and
the POTS person who feels like they just ran the 5 miles and the next day can't walk will STILL be able to recover and do it again.

It not that I am minmizing the challenge and pain.
Its that I know the pain is going to be with a person with chronic illness
so can choose to either stay in bed to mitigate it and have OTHER things get depresses in both body and mind
OR push through and MOVE
KEEP making progress and do what can GENTLY

I don't think a 2 block walk to sit on the bus then walk a few more blocks to go to a Dr. Appointment is going to be so much of a challenge the kid will go into relapse for months!

I mean no moreso than the walk across town to meet a friend on Halloween was going to put my kid out of commission.

But I am home so I will just drive the kid EARLY and they can find a coffee shop to sit in and kill time until the appointment so I can get back home to meet the plumber. That will be the solution- go early then hang out there somewhere.
Cause I did not want to put off the plumber once they said they could come out tomorrow!

I paid off a couple MORE medical bills today.
I like doing that-
especially for the really amazing Allergist we found.

My youngest is not necessarily a believer of the immunotherapy helping her but all the rest of the family can HEAR the difference in her breathing.

I also had a really lovely afternoon walk then cup of coffee with a dear friend and her son. I recalled in the past inviting her to come see the show put on my the arts org for folks with disabled family that I work with as a volunteer thinking she and her son ( who is autistic- now about 30 yrs old), would both really enjoy it. She said no as the venue is in what used to be an actual barn renovated into an arts center and she had brought him there once and he had mad allergies.

So it turns out I never invited them again cause of the NO

BUT they ARE interested as that was a good ten years ago. And things do change
and she told me
" I brought him for immunotherapy, and it made a world of difference! I mean he used to be allergic to just EVERYTHING"

Which was so interesting to me. That first comment actually from her came after on our walk on a lovely trail we saw horses and I asked her son if he liked horses. She told me she has owned three horses in her life. I had NO IDEA that she used to ride!
I knew she was raised a country girl for sure...
she said "If he were not allergic, he would have been a cowboy."

So it turns out they are interested in next time there is an event. In fact she had called me one time in the past year (last year maybe?) to get together when her son was going to a new art class she was having him try out to see if he liked it. It was one of the art programs we organized recently at the org I work with.

The funny thing is they has been asking for additional board support to show up and help out and had thought about it but was so happy chose not to as truth be told it was more valuable for me during that hour once a week to reconnect with my old friend I had not seen much during Covid.

The last I had seen her in fact WAS during COVID perhaps two years ago but was on the event of her being seriously ill herself. June was in town and went to visit her and called me and said "She has to go to the hospital. She is wasting away here seriously ill"

Indeed it was spot on accurate. They in fact almost got turned away at the ER by some triage... I recall the story. My friend had no insurance for herself as a mom who had stayed home for years taking care of her autistic son.

June insisted they see her and herself pointed out the symptoms of severe dehydration- (I forget exactly what- tongue... some specific things)
and they kept her and ran tests and finally identified the GI trouble.

She had a serious infection, bacterial in her GI tract and with IV and care got better but was in that hospital for about three or four full weeks.

When they ran the labs she was immediately admitted, and a social worker actually was really good to push through paperwork and get her on Medicaid herself and got some coverage for the medical bills. She of course had co pays but she had some help.

He kids Dad stepped up to plate and took their son and it was actually good for that relationship.

So anyway, it was so good to see her. The state got her registered and hired as his official caregiver. He was eligible for benefits he had never received which that social worker set her up for. First, they hired a caregiver for him as when she was out of the hospital, she still needed bed rest. But then she had trouble finding one. (there are labor shortages for real and she lives on a mountain in the middle of nowhere really! It is beautiful but this was in Feb when she was ill and in the snow that mountain is hard to drive on for the unitiated to country mountain driving! The aide sent lived hella far away in the suburbs and did not want to drive that commute and navigate that road in winter for sure! Eventually the social worker helped get my friend herself hired by the state of WVA as a caregiver for her own son. I am all for that! I mean this is someone who has stayed home to raise him and needs some help. This is not someone who does not want to work (She has worked not only as her own real estate agent but did work out of an office for years. In fact YEARS AGO the very first job my one kid had was when my friend hired her to clean the real estate office she was working in as an agent. I think they hired her to clean it and she subcontracted the job to my older daughter after some time. She had been doing it with her son in tow- and I sure finally just realized she could hire someone for less than she was paid to get it done! She ALSO was caring for her elderly father who has been battling cancer living in the basement apartment (it is his home actually. He preferred the kinda bachelor man cave basement apt and chose to let his daughter and grandson have the upstairs! I know him really well as well and he is indeed the sweetest man. He in fact worked at a Volvo dealer for years and in his retirement, he is the mechanic that kept my old Volvo on the road four years after it was so called done and not salvageable after the accident that happened JUST after I dropped collision on my insurance to save some money!)

June was not well herself so really could not help her out then but her showing up when she did was so critical. Our friend could not eat and keep anything down and was skin and bones when she came upon her.

It was just so great to see her. She has a really positive outlook on life and we always have a really nice time.

She finally got her son on the waiting list for a day program and she visited and liked it when they called to say there is an open spot so she might for the first time ever have someone else help care for him and give him opportunity to engage in the world without here. Her philosophy was "If no one can help him better than me, why would I not want to just be the caretaker of my son? I never want to limit his opportunities but here there never was anything better."

Considering she lives in WVA- just west of me, but still, not a state which has been as progressive in developing meaningful placement for folks with disabilities-
I mean they had to be SUED by the Dept of Justice to comply with regulations to integrate and have community-based programs.
This was a civil rights path that not many think about unless they had family with dyabilities-
but in the past, many were just kinda LOCKED AWAY and HIDDEN in institutions. They were horrible places with awful conditions and families were encouraged to just give up their child- hand the child over to the state when they had no other solutions for caring for a child with a disability.
My friend worked as a real estate agent. She and her husband actually ran a business and after divorce still continued to work together until he wanted to move onto other things.

But she had the support of her father, so it worked for them for her and her son to live there.

She at one point did meet a man and fall in love and was going to move to marry him and start a life there. But then there was a tragic ending of that as HE died! It was just awful for her.

So it is good she is in a good place again, overcome that grief of his loss (I think it was four or five years ago); and then overcome her health issues. She was just ever so grateful that when she was really sick I visited her in the hospital and then at her home a couple times. She told me June and I were the only ones who did. Its hard to maintain friends when a caretaker of an adult autistic child completely dependent on you. Her son is lower functioning and needs alot of support. He is such a gentle kind spirit and it was nice to enjoy their company yesterday. She take him out walking alot on trails in the woods to get exercise and fresh air and then to get a nice cup of tea or coffee afterwards. He is in constant motion- loves to walk and does not like to sit still often. He is very high energy and sometimes gets really anxious around other people so it was great that he was super relaxed and seemed to really enjoy our sitting in the coffee shop yesterday after out walk (which was three miles total). He was really chill and she commented on it and in hindsight its true he usually doesn't have patience to sit for long with other people. When we did get together when my kids were younger and went on a picnic he was so ready to go and they just could not stay that long. That makes it really hard for her to have developed friendships as the only time she does not have him with her is Sunday afternoons when he visits his Dad. He used to never stay overnight with his Dad. I think that changed once she was sick and he had no other choice and his Dad was really great about helping her out then as well. He came over to be sure both of them were doing ok while she recovered and did the grocery shopping and really cared for them both.
It was good to see those who went through a divorce be able to be friends and for him to help her out when she really needed him to. I was working then and he ended up giving her a ride home from the hospital when she was released.

It was just so good to spend time with her as I have not seen her in a while.

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