#its just not feesible with my time and my brain BUT I WANT IT SO BAD

[tamedstray]

I know I just posted ooc tonight but it honestly made me miss being here so much 😭 I've got a hearing test in the morning, but I'll be around tomorrow afternoon to write and plot <3

[war-torn-and-collateral-damage]

Okay so a bit of an update on things, a bit of me calling out a couple asshole anons.

1. The Anons. I have recieved quite a few messages that I never feel deserve the recognition of posting essentially accusing me of making things up for attention, so included in this post is a screenshot of the notes from my most recent doctors visit, specifically the part of the note where the "active problem list" is. This is the list of all of my current diagnosis that we are working on treating, managing or learning to live with. I do not feel I should have even needed to provide this but here it is. If anyome had any questions on that feel free to ask but please don't be an ass, my life is hard enough as is.

Next is Updates,

Uhmm so I have a few things to touch on here.

1. After much discussion with my doctors, my specialists etc. My fears have been confirmed, due to the medical problems I have on top of the cognitive defecits plus the neuropathy eventually, we don't know when, there is no specific time frame, eventually I will go downhill and not come out of it. Pretty much right now I have good days and bad days about half and half but the bad days will start to be more frequent and more severe and then the good days just wont happen anymore.

2.We also talked at length about the bladder issues, I am self cathing multiple times a day still having incontinence, still bedwetting and still with no sensory awareness (This means I cant tell when I have gone) we talked about options and he said we arent there yet but a suprapubic catheter is inevitable and I will be needing one placed down the line. This is a catheter that will be placed in my bladder through my belly opposed to my urethra, meaning I can still be sexually active, Id be at a lower risk for infection, it is a more comfortable option and would mean that I would no lo get be dependent on briefs or dependent on an aid changing my briefs on my bad days. Insurance wants to give pelvic floor therapy a go one more time before they approve the procedure amd my doctor has informed me that once its in goong back to "normal urination" will not be a feesible option meaning once its places it will be permanent and I will be peeing through the tube for the rest of my life.

3. In Occupational therapy last week I was tested for primitive reflexes, primitive reflexes are a reflex developped ineutero that should go away or "integrate" at various stages in the first few years of life. These reflexes should be present in infants but NOT in "neurologically intact adults" 4 of 9 of these reflexes are still present for me, which means that that part of my brain did not develop adequately but this part of the brain is a foundation so when that didnt develop appropriately nothing else did either. Now they could integrate these reflexes which is the goal which will help reduce the physical reflexive response to stimuli BUT the under development to the rest of the brain already happened and can not be corrected. Included is a chart about the reflexes and the signs and consequences that happen in the event that the reflex was retained and not integrated. My Primitive reflexes still present are the Tonic Labrynthe, Moro, Spinal Galant and Palmar Grasp. Apparently retaining these reflexes is not abnormal in people with Autism.

All of this said, I have alot going on, I have a lot of things I am trying to figure out and trying to work on and fix and tons of appointments and follow ups and procedures and I could use some help, I really could. I have a amazon wishlist that essentially consists of cloth and disposable briefs primarily, uhmm we are grying to switch me over to cloth briefs as they are easier on the skin and will be more cost effective in the long term they also feel more natural I feel like but also disposable ones are on the list as they will be necessary to help hold us over till we can get more cloth briefs. Also on the list is some workout clothes items as my doctor and I are trying to increase my daily activity, I have been walking and am getting a YMCA membershio from my insurance next month and I dont have anything to work out in so any help would be great. Thanks in advance.

You can find my wishlist here (: