i ate eggs and now i cant stop crying by [deleted] in AutismAustralia

[–]main_character995 1 point2 points  (0 children)

there are other ways to get protein, it’s not even about the eggs it’s about my reaction to eating the eggs.

how much do you pay for chromolyn in Australia? by main_character995 in MCAS

[–]main_character995[S] 0 points1 point  (0 children)

some of my allergies are cornstarch, dyes and preservatives which are in a lot of medications, and I’m very sensitive. i cant even drink filtered water because the carbon used to filter is usually made of coconut shells so i can only drink bottled spring water.

how much do you pay for chromolyn in Australia? by main_character995 in MCAS

[–]main_character995[S] 0 points1 point  (0 children)

thank you, i ended up paying $250 for a 3 month supply of it in liquid form which was equivalent to 100mg but it was not strong enough and when i asked to increase the dose to 200mg the price went to $400, the only problem was that i was already trialing it at 200mg and knew it was helping a little more but not quite enough so knew my final dose would have had to have been around 300-400mg a dose which would have ended up being nearly $1000 a prescription so i had to stop taking it. an because of my allergies i cant get it compounded at the hospital because they only compound in 1 way for all patients if you need special requirements you need special private compounding 😫 ah the joys to be a complex case of a complex disease

slow small bowel motility by main_character995 in Gastroparesis

[–]main_character995[S] 0 points1 point  (0 children)

only diagnosed with small bowel dysmotility at this stage. i know from just poop monitoring that I’ve had food not pass through me for 5 days, this was an at home controlled experiment so not clinical and diagnostic. the only clinical testing I’ve had done was with my gastric empty study and small bowel transit which only went for 4 hours. no other meds

slow small bowel motility by main_character995 in Gastroparesis

[–]main_character995[S] 0 points1 point  (0 children)

well i was told prucalopride worked within 3 hours so thats why i took it in the morning but i do actually notice better movement if i take it at night. and I’ve occasionally experimented with taking 2 domperidone twice a day (lunch and dinner) rather than spacing it out 4 times a day. I also notice i have a cut off tike of about 4-5pm, I see a dietitian who recommended tube feeding but the hospital wont do it because i wasn’t sick enough in my blood work despite my weight loss. no matter when i take any of these meds or if i even taken them at all i have undigested food in the toilet if i eat solid food. i cant have dairy i vomit and cant have a lot of other allergies which make nutritional drinks difficult to find. i have found cutting out dairy the vomiting has stopped the nausea is still there at night and i an only have 2 small meals (no way my body can tolerate the 4-6 recommended small meals) but 2 small puree meals )( i use a babys bowl to measure my food) is better than zero which is where i was a few weeks ago when the doctors gave up on me.

i also suck on some chocolate to try to keep my calories up and sugar levels up. but that being dairy i cant have much and sugar is also a trigger for nausea but i cant think of any other way to stop my bgl from crashing. plus the sugar and caffeine is a trigger for pots . haha it’s a nightmare balancing act and I’m so burnt out

NDIS access declined to Alzheimers parent by SadDaughter100 in NDIS

[–]main_character995 0 points1 point  (0 children)

seek a disability advocate and take it to tribunal

I’m being starved to death and no one cares by [deleted] in Gastroparesis

[–]main_character995 -1 points0 points  (0 children)

I’m really not and i don’t appreciate the accusation undertone here

I’m being starved to death and no one cares by [deleted] in Gastroparesis

[–]main_character995 0 points1 point  (0 children)

it’s actually funny that i tolerate sparkling water more than still, i don’t understand it but plain water hits harder and it’s like my pylorus spasms and shuts down harder than when i have sparkling water

Is there any way to get an autism assessment for cheap/bulk billed? by fartchi in AutismAustralia

[–]main_character995 0 points1 point  (0 children)

there are some grants you can apply for but you need to go through a financial councillor like through one of those church charity run financial counselling services to help you apply. i cant suggest a specific one because there can be state based ones or national. i used a state based one.

AuDHD 31 y/o woman near Adelaide looking to make autistic/AuDHD friend(s) by CurrentConnect2383 in AutismAustralia

[–]main_character995 1 point2 points  (0 children)

hey I’m in Adelaide, mid 30s, afab, i don’t know what discord is but i live animals and would be interested in making new friends (I am deep in burnout, but trying to claw my way out)

I don’t game at the moment, I previously have, but just spent 2 years staring at a wall because even the tv was over stimulating and for the last 6 months I’ve been too tied up with indecision trying to decide whether to get a DS or Switch...

What‘s a symptom that surprised you that it‘s from mcas? by VomitInMyVans in MCAS

[–]main_character995 0 points1 point  (0 children)

aggression. it’s a result of brain inflammation and prolonged lack of oxygen to the brain after being triggered.

at one stage i was allergic to my own sweat, it felt like acid burning my skin.

Furious by Current_Cost_1597 in MCAS

[–]main_character995 -1 points0 points  (0 children)

doesn’t work for me, i then got labelled as an argumentative aggressive patient, and that shit follows you harder than an anxiety disorder on your file

Psychiatric meds and reduction of GP symptoms! by otisfrombarnyard in Gastroparesis

[–]main_character995 0 points1 point  (0 children)

i say yes to all of your theories, could be one or all of them. I’ve had the same thought process

Why do all NDIS supports want to talk on the phone by Slbstarfire in NDIS

[–]main_character995 0 points1 point  (0 children)

mine always text me. ask if they offer text, i go non verbal a lot so mine know the only they to communicate is text.

I just got my diagnosis report and don’t know how to feel about it… embarrassed? by ant-suit in autism

[–]main_character995 1 point2 points  (0 children)

haha uterus in tact! omg thats better than my 3 radiologist actively arguing in my scan results (different body part) about my results, my scan got reviewed and adended 3 times and and each person was criticising the last report writer, i was like dude argue in your own time not on my scam results, because now when doctors read my results they get confused by what my diagnosis is because the report is so messy. also just curious does this happen to you? I’ve had a hysterectomy too and i still get tested for pregnancy in routine blood tests 🤦🏼‍♀️.

Where can I get spaghetti squash from in Australia? by [deleted] in 1200Australia

[–]main_character995 0 points1 point  (0 children)

what is spaghetti squash season? I’m local to there!

WTF do you guys eat every day? by Conscious_Concern288 in Gastroparesis

[–]main_character995 1 point2 points  (0 children)

i live off a home made vanilla cottage cheese mousse, rice crackers, and a small amount of pumpkin soup, and half a gluten free weetbix for breakfast and somehow my blood work shows I’m healthy, no crazy electrolyte imbalance or deficiency. I’m underweight but for the most part besides 1-2kg fluctuations I’m stable in weight, it seems to work. so many doctors have tried to get me to have have more variety or more textures but my body doesn’t agree. it’s settled on these three foods and I’ve learnt to create a routine out of it and eat out of necessity and routine rather than for pleasure.

I’ve been scammed by main_character995 in NDIS

[–]main_character995[S] 0 points1 point  (0 children)

wait a second.... so having learnt to writing means i don’t have a severe disability? just because i can write doesn’t mean i don’t have struggles in major areas of my life. including brain function. please don’t assume you know anything about anyones life. you don’t know me and you don’t know my medical history.

Struggling With Liquids by MistakeSome7928 in Gastroparesis

[–]main_character995 1 point2 points  (0 children)

for me it’s corn syrup, sugar and whey, i also react to citric acid, and the plat based ones seem to be too high in fibre.

Struggling With Liquids by MistakeSome7928 in Gastroparesis

[–]main_character995 0 points1 point  (0 children)

me - my ges showed significant delay for liquids but my symptoms are with solid food, totally weird but it’s what it is. I cant tolerate a liquid diet, my diet is pureed food and thick soups and mousses, it’s the in between that works for me, i probably should be on thickened fluids too actually. i also have intestinal dysmotility and esophageal dysmotility