not coping

im worried about the finding or the same answer 'i dont know what is causing it', and one of them im not finding much info about. i havent heard of it unless its for a heart but its not for my heart.
its abit iffy atm, specialist isnt sure he wants to expose any more radiation yet. @Sans911 going off what i can find for a heart procedure if its similar im not sure i want to do it.


yeah they were ok. not really that interesting tbh, have been there more times than i can count and there really isnt much to see. the coastline is nearby and have around 10 different beaches or water places like lookouts, rockpools etc within a few hours north and south of us and thats just what i can think of im sure theres more.

Sometimes the same test can be used for different areas. Have you searched the test name for other body areas? Like if it's an angiogram, they can do that for the blood vessels in different parts of the body, like the brain, liver, kidneys, etc. I had an angiogram for my heart about 4 years ago because I had constant chest pain, but it come back with nothing.

I agree, I'd be concerned about the risk of exposure to radiation. But unless you're a cancer patient & having like weekly radiotherapy, the risk isn't that great. I just found an article by Harvard that might be useful for you.

https://www.health.harvard.edu/cancer/radiation-risk-from-medical-imaging

Most tests the worst and most anxious time is in the preparation period. Well, I find that anyway. When the have to give you a local and although you can't feel pain after it's done, you know something is happening. You can always ask for a mild sedative before a procedure. It doesn't make you sleepy, it just calms you a little. My mother has to have something before a certain procedure, otherwise she shakes.

@outlander

he said he is considering an abdominal angiogram @Sans911 he refferred me to do an abdominal doppler us but i tried it 4 times (3 in one day and one the following day plus a regular us a few days before that) but the us said 'excessive gas' and the doppler couldnt be performed for the same reason. i asked if there was anything i could do to get rid of it and they said i couldnt because its just within the abdomen itself and not in an organ so i cant just get rid of it.
he said it was a pretty important test but hes not sure about expose more radiation in such a small amount of time since i had the ct scan a month ago, and then the mri only 2 weeks ago and then this test could be done in the next week.

the gastroscopy is making me nervous but i would rather it done then sit and wait. he said if i can work up the $800 for the hospital fees then he and the anaethetist will bulk bill it (so basically making it half price) so im going to see if i can get an advance loan pretty soon and just get it done. the public wait list even for urgent cases is at least 8 weeks atm (we are only 2 and a bit weeks in since i put in all the paperwork) because of covid otherwise it would normally be done within a month.

also the 'thing' that was found on pancreas isnt dangerous and i dont have to worry about it. itll go over time itself but i need to be on a much stricter diet and it has to be full of protein . i really dont have alot or like alot of protein foods so will be tricky to try and alter. at least its not dangerous and isnt causing any of the symptoms.

How clever am I lil Sis 😊 @outlander? That was not a bad guess.

Well for that test it looks at the blood vessel capacity, and structures of the vessels themselves (internally) to see if there are problems with the thickness of blood vessel walks, blow flow, obstructions and any bulges or aneurysms mostly.

Nuclear imaging can do a similar thing with injectable dye, but again exposes you to a bit of radiation as well.

My guess is that he is suggesting it so that it adds to the story he is building, and he wouldn't suggest it if he thought it was unnecessary (I know you know that already, I'm just thinking aloud). Maybe it will show nothing, but it might show something. That's the problem with most procedures. There's no guarantee with anything.

Sounds like the gastroscopy is one of the most important tests, and that seems very kind and generous of your specialist to offer that.

I know this is all so much to contend with for you. Especially at such a young age. You've had many health issues to deal with in such a short period, and have suffered injury as a result of procedures. It's completely understandable to be anxious. And it doesn't help that you have no family support not only to talk about these health issues but just for someone to be there for you. You know I would absolutely be there for you by your side if I could.

Hugs for you lil Sis 💕💕

Well that's a good thing then @outlander. There's protein in lots of different foods, like eggs, nuts, pumpkin seeds, yoghurt, and lentils and beans. And lots of food stuff have fortified protein now as well. And you can get protien powder flavoured or unflavoured & make smoothies. Sometimes I've made smoothies with juice instead of milk (which I know you're not a fan of).

I see you in the background @Former-Member. No need to respond but you're more than welcome to if you want.

you are very clever and it was a very good guess @Sans911
the heart procedure mightve been abit of a giveaway?

i know what hes looking for at least (well to check anyway) im not sure i could lay there while they done injections similar to the way they would check the heart vessels. The ct scan with that dye i might be ok with providing they can find a vein. it took them 4 goes last time with the 4th only just successfully put in and the radiologist was quite worried if it was in properly when hooking up the IV line for the dye and come up quite bruised and sore a few days afterwards.

he wants to have a look around inside to see if theres any ulcers or something else causing it. i have some symptoms of an ulcer but some are added so hes not sure what it might be because quite abit of my pain is where pancreatitis would be felt as well but i dont have that.

he is really good and i wasnt expecting him to say he would bulk bill his own fees. when i spoke with him i asked him what his fees might be if i was to pay privately and he said its around 1500 give or take abit however with him and anaethetist bulk billing it will make it around 800. which is correct as i enquired with the hospital and they said their fees are 800 for a gastroscopy.

It feels like since he didnt find anything then i dont really have a reason to complain about not doing things etc. Like if he has of said 'this is what it is and this is how to treat it' or even said its urgent that it needs treatment then maybe family would believe me too.

it scares me that if he doesnt find anything he will throw me in the too hard basket and blame it on my mh as well. he has me writing a diary of when the pain occurs and what might of caused it as well to see if theres anything really specific so any foods, exercise, random flare ups. the random flare ups and certain foods are the 2 ive found the most over the past 2 weeks since ive been writing it down.
is it silly that i wish they would find something? anything? it honestly didnt bother me if it was serious i just needed something-some sort of answer.

it makes it hard that family dont seem to really pay attention. any time i mention my health issues its usually an eye roll or an 'uh huh' even just to talk it out or ask for help or work out arrangements. no interest at all so it makes me stressed.
and this is just one health issue 😥😥 just never really seems to end anymore.

i wish you could come here, i know you would come with me and that would be amazing. i will have to carry you, snowie and my other close forum friends in my heart instead.

it is good @Sans911
he wants me to stay away from anything with high fat, sugar, carb, (i think he said not alot of dairy as well) oily/greasy, take away, anything overly heavy and increase proteins so its been overwhelming trying to find things. im honestly thinking maybe something like lite and easy as its already made, i can pick things out i might like and i can also contact them to ask what of their meals would be ok. it costs more but if its only temporary for abit till i can get some things sorted out it might be worth it and i can try and get it for pop as well or something like YouFoodz which is similar but cheaper.


@Former-Member yes please join in if you feel ok, your most welcome here

Im sorry that was a huge post to read

Mmm... Tricky veins are no one's friends @outlander. What a bother. Mine are getting a bit more difficult now too as I've had so many procedures in such a short space of time. My left acf (in the crook of my elbow) is my best one, but I'm sure it's going to completey shut down one day due to overuse. I'm fortunate that I know what veins are used, and I've found my best ones so I always tell medical people which ones to use (if I'm awake that is). Try to do some research on veins used for procedures or phlebotomy, drank a couple of glasses of water (I know that's hard for you) and then see which ones come up. Generally the inner elbow is the easiest, sometimes one on the inferior side of your wrists, hands (but it often hurts there more). There are some in your forearm too but these are more difficult.

There are some good specialists that are more interestedin helping their patients then making money. Sounds like yours is one of those, and he's determined & thorough. But for all the good that specialists are, the body can be incredibly complex and finding answers isn't that easy at times. Yes, it might make it easier for your family to believe that there's something wrong. But at the same time, they can still offer support, assistance and encouragement to help you find an answer. Just because you don't have a 'label' doesn't make it less real.

I've seen many a time patients have accidents, injuries and complaints where there's no obvious deformity, they are in no pain or excruciating pain, and sometimes there is an obvious problem on further examination, but sometimes not. What do you do when there's not? You still have to give people the benefit of the doubt🤷‍♂️. There are fakers of course, attention and drug seekers. But you are none of those.

And everyone here believes in you, supports you and wants you to find answers and solutions. So if we can, why can't your family? Because they are self absorbe, that's why. Much like my mother is at times.

Everyone's tolerance to pain and discomfort is real and valid to them. I don't feel you complain that much, and anyway, it doesn't matter to me if you do. It's uncomfortable for you, your life is not normal right now because you are unwell. You can't eat, sleep or do things normally. Damn, I'd be complaining (but I rarely do either).

And no, it's definitely not silly to want to find something. We all want that, right? We all want answers to things we can't explain. It's human nature. When you have an answer, you can decide what to do next. You can make a plan. You can seek treatment. And hopefully resolve the problem once and all.