long angry vent.

awake since 3 am.  i knew someone once who told me these middle of the night sleepless disruptions were called a hearkening......the Lord's way of bringing it to one's attention that you or i need to give it our full attention......the it being the big thing in the middle of the road, the elephant in the room.  i'm so bloody tired......

discouraged, angry, flabbergasted......too bad, no one is special she said.  she?  the PA-C at the orthodpedist's office.  she says that because i have not had treatment/been seen since 2017 they have to treat me like a brand new patient.  my past histoy, the information that shows that I NEED the epidurals doesn't matter.......to insurance it's a new problem and this means that first I have to do 6 weeks of P.T.  twice weekly......times 6.  get up, get ready, go do exercises say on tuesday and then again on thursday 12 times in a month and a half.  she might have well as said go to the moon and back and then we'll see.........

i can't do that......so then she says ok, well you have to do six weeks of neck and back exercises first.  the back exercises are on flat hard surfaces.....where i would have to lie flat, on the floor in my home and do these things.....i can't do that.  the other exercises require that you get on your knees for another set of exercises, i can't do that either.  the pain in my knees is so severe that it would be out and out cruelty to do that.  ........so she says do the best that you can, but no one is special, insurance will not proceed forward for the next six weeks.  controlled insanity......insurance determines that i or anyone in this kind of pain WAIT and WAIT and WAIT and wait some more. 

so i'll be speaking to the insurance people to see if there is any humanity there......if anything can be done.  the return appt date they gave me is july 23rd.  at that time we'll agree that i need mri's, that means another $40, another ridiculously long wait......and then they will call in the mri test orders....which will take however long from the time they make that call to the time i get the tests done to the time they get the results to the time i have to go back and give them another $40 for them to tell me that i need the epidurals.  something we already know now.......so i'm looking at giving up the rest of June, then July, then August.....so relief will not come in any form  until September, all this lost time without being able to move well or increase mobility......which means additional lost time where my issues will all get worse.  no one seems to get this but me.........

the PA-C is named Ruthann.....I feel like I'm talking to a wall.  I can't get a sense of her as a person or as a care professional, she arrives for our appointment two hours late without apology and wants to know why I had to be seen for two body parts within the same appointment, she asks if it was due to lack of transportation.  I tell her that I have a car, it's an inablilty to come more often due to the lack of stamina, energy (because of autoimmune issues) coupled with this current issue of pain in my upper and lower spine.  so she wants to know what i'm dealing with.......so i say sjogren's syndrome, CFS, Fibromyalgia......and keep going with the list......and then my voice breaks and i stop to try to compose myself.  here in the dark, here with you in the light or in the dark i can talk about these things.....because you are caring and sadly because you understand the difficulties/levels of challenge that i speak of......but out there.........out there in the world the nightmare of what we live is out there.......now they hear how awful it is......i am telling her and it is so hard, humiliating.......for many reasons.  i've learned that most people don't care, don't say what they could or should say to be of comfort to people like us.  they dismiss our conditions because they are chronic.......as though this fact gives them liberty to write it off........as thought we are an it...........it feels cruel, it feels like we are imprisoned by the lack of compassion, the lack of drive to step up and make it better for their patients.  she said my quality of life has been affected.........as though that is something normal to just accept and be ok with........why didn't she say even once that she would help me, or have my back or somehow in someway make me feel like we are a team with my health, reducing my pain at the core of the issue.........

that makes me so angry.....................sooooooooooo angry, a deep lavalike anger that boils in the depths of my soul, a soul that cries for justice........and as i cry it all falls on deaf ears.  please God help me understand why i/we who suffer have to suffer in such an isolated limited understanding from others way????????  i beseech you to help me comprehend it.........why doesn't anyone get ANGRY and challenge the doctor practices who accept this crap from insurance and why doesn't anyone challenge insurance companies for restricting patients from the care needed by a particular patient.

in this case the insurance company stance is to treat me like a healthy person not like the person i actually am......in order for me to be able to do the exercises they have for me i need the epidurals first so i can move well enough to do them.......

then there is the other stuff......i felt so alone talking to her, i needed to connect in some way, to feel like she was listening, understanding me, connecting to me......but talking to her made me feel more alone than ever......it's all the things she did not say.........a drop of human kindness goes a long long way. 

she wants me to take a round of prednisone for the next ten days........oh God in heaven noooooooooooooooo.  first i have to speak to the insurance company.  that's first.

the other thing?  i can't remember the details of what she told me about the xrays.......she told me that my this and that and the other are really messed up in my neck.....but what was said specifically is gone from my mind.........seriously sucks trying to function in public during a flare.........  she told me i could increase the dosage of the muscle relaxer, i told her i would not remember and could she write it down for me, she promised, so when she handed me papers i assumed she included that plus the notes from today's visit.  no..........not even.  not there, just those damned exercises.........please Lord please allow me a smidgen of forgiveness as i burn in this hell at night. 

i can't decide if i should reel it in or if i should scream until someone comes to help........that will be a lonnnnnng wait. 

when i got to the pharmacy to get the steroids they weren't ready so i had to come back.  i went to the grocery store for a few things....the electric carts were lined up so closely that they were inacessible.  the closest cart was plugged into an outlet that was 4 feet away......on the wall next to the other carts so tightly together that the only way i could have unplugged it would be to get in the first cart, sit and then slide over......get in the 2nd cart, rise and move, then get in the third cart......rise and reach for the plug in the wall......all while wonky with extremely limited floor space to put my feet.  that is why i hobbled inside the store to get a customer service staff member.  she came to help me, she got to the plug after a bit.......scrambled nimbly through this obstacle course as a healthy person can........and got me a cart.  i thanked her but i also asked her what would happen to the next person in need of a cart......and she said that they could come get her to help just like she did for me.  and i said......do you understand how much the disabled person needs that cart?  how much they need to save as many steps as possible?  if you would realign the carts so that they are safely accessible to those needing them there would be a much better situation.  she didn't seem to get it.......she listened, she was polite, she was already turning back to her paperwork.

so she leaves, i drive the cart she got me, it goes all of 8 feet, still in the store lobby and it DIES.  it's dead as a doornaill, so now i have to sit and wait til a staff member comes ........a young lady gets me another cart, then she is physically wrestling this uncharged cart like a crocodile hunter would wrestly a crocodile into submission.......holy cow she is strong.  impressive. 

so i roll to the customer service desk again and i try again to reach her as a person........this time she gets it, hears me but i also know she will do nothing to fix it.....beyond saying she's sorry and hopes i'll feel better.......

and the anger continues to simmer and boil down below.  the world is not fair......it's just not.  i'm so bloooooody tired.