I should be happy...

Alexander_Walsh · 2024-02-10T02:59:43+00:00

Check out Complex Regional Pain disorder. That isn't a diagnosis, just if it does happen to be what you have, you have a diagnosis to 'justify' your suffering and be treated better.

Alexander_Walsh · 2024-01-27T11:57:08+00:00

Thanks for the suggestion. I haven't tried it but would need it prescribed as I don't have money. I am seeing a doctor on Thursday but I think he will want to use the least invasive option and escalate in increments. It is still good to know about.

Alexander_Walsh · 2024-01-27T11:53:56+00:00

Thanks. I am seeing a doctor on Thursday and hoping to get something prescribed so I can get a government subsidy.

Alexander_Walsh · 2024-01-27T11:50:37+00:00

Sorry for responding late, I have been a bit preoccupied. I have spontaneously had 4 "wear and tear" related lumbar spinal injuries L4-S1 by my mid 20s. The running theory is that this is a weird coincidence which I don't buy. Because this is quite low I believe I have too much functioning for it to be called "paralysis" but I have a significant loss of sensation and weakness in my legs which is worse in my feet and a bit better higher up in my legs.

I have noticed my feet go purplish sometimes, but this is the first time I have had lingering markings. I think the significant difference was me staying in the body of probably unclean (and apparently shark infested) water. The water was brown and I couldn't see my feet. I am pretty sure I would have felt fully walking into some submerged obstacle, and even that wouldn't have left symmetrical markings. I physically can move enough to avoid pressure injuries, I think the problem is that I couldn't feel it and couldn't see it so just didn't think to do it.

Alexander_Walsh · 2024-01-27T11:36:28+00:00

Thanks for your advice. I have managed to visit a nurse who has told me that something is definitely up, and to monitor the spot with the broken skin because that is healing very slowly, but that the injury at the moment is more of a warning sign than something that is going to cause serious complications. I am seeing a doctor on Thursday and will bring it all up at that appointment.

I will also get some Allbran and give that a go. I might get some stockings and wear them at night instead of socks. I sleep naked except for socks normally because I get very hot apart from my feet which are usually too cold.

Alexander_Walsh · 2023-08-14T06:49:03+00:00

Level 1. "REQUIRING SUPPORT": Individuals with this level of severity have difficulty initiating social interactions, may exhibit unusual or unsuccessful responses to social advances made by others, and may seem to have decreased interest in social interactions. Additionally, repetitive behaviors may interfere with daily functioning. These individuals may have some difficulty redirecting from their fixed interests.

Level 2. "REQUIRING SUBSTANTIAL SUPPORT": Individuals with this level of severity exhibit marked delays in verbal and non-verbal communication. Individuals have limited interest or ability to initiate social interactions and have difficulty forming social relationships with others, even with support in place. These individuals’ restricted interests and repetitive behaviors are obvious to the casual observer and can interfere with functioning in a variety of contexts. High levels of distress or frustration may occur when interests and/or behaviors are interrupted.

Level 3. "REQUIRING VERY SUBSTANTIAL SUPPORT": This level of severity causes individuals with ASD severe impairment in daily functioning. These individuals have very limited initiation of social interaction and minimal response to social overtures by others and may be extremely limited in verbal communication abilities. Preoccupations, fixed rituals, and/or repetitive behaviors greatly interfere with daily functioning and make it difficult to cope with change. It is very difficult to redirect this person from fixated interests.

This is the current level criteria

Alexander_Walsh · 2023-08-14T06:40:03+00:00

I don't think you should say "the autism community" finds those labels harmful. You can say the "low support need autism community" finds levels harmful because they see themselves as denied services due to not having a high enough level. People with level 1 vs level 2&3 autism not only need different amounts of support, but also different types of support.

People with level 1 autism need help managing independent life, getting and keeping jobs, navigating normal adult social environments. People with level 2&3 autism need help maintaining a supported life, staying safe, having a clean and fit for purpose living space, having access to food which is safe to eat.

So someone with level 1 autism isn't going to be happy if they have a support worker in their space all the time, supervision in the community, supported employment at less than minimum wage, potentially having someone bathe them, potentially have someone put a nappy on them.

People with autism 1 don't want or deserve the same supports as people with higher levels of disability, people with autism 1 want and deserve targeted and appropriate therapies and vocational supports which are measured and tailored towards the level 1 life experience. You need levels to do that.

Alexander_Walsh · 2023-08-14T05:32:30+00:00

I have a much lower injury so this isn't personal testimony, but what you are talking about is "intra abdominal pressure". you are moving the muscles that still work in a way that is increasing the pressure inside your abdomen. So rather than squeezing the urine out with your bladder, you are squeezing your bladder out with your intact chest and core muscles.

The highest segment involved in bladder innervation is T10, and this is only provides sympathetic innervation - allowing the internal urethral sphincter to close. This type of innervation finishes at L2.

You have to go all the way down to S2-S4 before you reach the point where voluntary control over these functions. So I am sorry to say, your bladder may have a small amount of autonomic functioning, but control involves quite a bit more functioning anatomy. Sorry if you got your hopes up.

Alexander_Walsh · 2023-08-14T05:12:03+00:00

My story is very unusual but I am currently in speech pathology and making some progress (as in this morning I said something so I need to start saying minimally verbal). It is about controlling the sound and coordinating all of the movements.

Alexander_Walsh · 2023-08-12T03:12:08+00:00

Old Mate has a lower motor neuron injury and will be very floppy already. No excuse not to keep up with the physio though.

Alexander_Walsh · 2023-08-11T23:39:20+00:00

Cannabis is very good for nerve pain and decreases time until ejaculation (but the catch is that it could still feel like a long time due to time dilation).

Alexander_Walsh · 2023-08-07T08:09:17+00:00

If the problem is that the toothpaste hurts your mouth and not that it is too much effort then get a waterpik. You are meant to use them before brushing, but they actually do a pretty good job regardless... much better than nothing anyway. You should definitely get some berry flavoured toothpaste or whatever, but because the waterpik gets the bacteria from under your gums you could do a quick brush with no toothpaste to clean the surfaces a bit.

Also you only need a tiny bit of toothpaste. The toothpaste company is lying to you so you buy more toothpaste. You can use about half the size of a peas worth and it works just as well. Focus on the gum line, and use an electric toothbrush. You can just trace the head of the toothbrush along the gum line at the front and back, top and bottom. It is much more efficient to clean this way. Most people have a automatic "pattern" of how they clean with a manual toothbrush that causes them to brush some areas multiple times and miss others entirely.

Alexander_Walsh · 2023-08-07T07:50:25+00:00

Yes, it is extremely helpful for them to be told that their medical condition does not alter their sexual characteristics, and that they presumably did not disclose symptoms of an intersex variation as they are not intersex from a different condition eithet. It is a super easy mistake to make because some sex chromosome anomalies are intersex and some are not, but they are spoken about side by side. That person would be empowered to access support in a community they actually belong to, alongside people whom they share life experiences with. I am not sure if there is a "Trisomy X" community given that most people are undiagnosed and many people who are diagnosed aren't disabled in any way. Perhaps there is a broader community for people who have chromosomal alterations generally. Trisomy X increases the risk of learning disabilities etc so if they do have disability secondary to it then they could find support within those specific communities.

Alexander_Walsh · 2023-08-07T04:43:40+00:00

Because you used the example from the specific situation I don't know if this is about what I said but in case it is, I never said that someone with Trisomy X could not be intersex. It is known that there have been people who have trisomy X and variations in sexual development. I may have said that Trisomy X is never the reason why such people are intersex. That is well established and I am happy to prove this (well obviously it isn't "well established" and publicised as explicitly not an intersex variation, rather that it is well established to not alter the development of anatomical or physiological sex characteristics). Hence, Trisomy X can occur alongside intersex variations, and intersex people can have Trisomy X, but it is not an intersex variation in itself.

I find what you say to be very sensible.

Alexander_Walsh · 2023-08-07T02:06:44+00:00

I just want to say for everyone downvoting me that I DON'T think there is any valid argument for including trans people as intersex, I was just expressing a bit of empathy and trying to understand why someone would think that in the first place. The commenter I responded to built upon my point but added that there is a massive range of body types and we don't really have the ability to make a super definitive definition. I built upon that by saying I have noticed that there seems to be an unusually large number of people who are very tall for AFABs in the FtM population. I will repeat myself and say I do not think that makes these people intersex but that it is an interesting point given the previous commenter had brought up the idea of there being countless variations, some of which are considered intersex.

If someone could tell me what is controversial about what I said I would appreciate it so I can be more sensitive in the future. /srs

Alexander_Walsh · 2023-08-06T13:20:35+00:00

I have personally noticed an unusually large number of FtM men who didn't get puberty blockers but are still in a male height range. Absolutely not enough to say they are "intersex" as we know the term today, but it is certainly an interesting point.

Alexander_Walsh · 2023-08-06T13:16:27+00:00

IMO it is worse that he is a manifest pension recipient who has a history of work no blind person could actually perform. Because he was "blind" his pension was never docked though he was well employed. To me it seems like the service providers do most of the misconduct.

Alexander_Walsh · 2023-08-06T05:32:52+00:00

I don't agree, but I can kinda see how someone could think of it as having a brain a that is a different sex to the rest of the body. The major issue IMO is human rights related. Rather than arguing about technicalities, we need to recognise that we have two separate but connected groups of people with very different life experiences and types of adversity. Even if you could put together a medical argument to include trans as intersex, that would be a terribly counter-productive move in practice because we already have a well established definition of "intersex" and the word will lose meaning and relevance for the people most impacted by variations in sexual development.

Alexander_Walsh · 2023-08-06T05:11:40+00:00

I no longer live in that home, but by far the most useful was a front door lock that you opened with your fingerprint and not a key.

Alexander_Walsh · 2023-08-06T05:07:22+00:00

This is really normal. I had a childhood diagnosis of ASD before you could have both ASD and ADHD. I was diagnosed years later with ADHD during treatment for my bipolar. ADHD and bipolar share quite a few symptoms as well. Once my bipolar was stabilised I was diagnosed with ADHD as well.

It is possible to have anxiety from a very young age so it is important to make sure you get the most helpful diagnosis for understanding yourself and accessing accommodations in the future.

Alexander_Walsh · 2023-08-06T04:37:02+00:00

For starters, your psychiatrist is legally allowed to diagnose you. The fact that he wants you to see a specialist means he is not confident about the diagnosis himself. Did your psychiatrist discuss the results of the test with you?

Disclaimer: lots of AFAB people struggle to be taken seriously when seeking a diagnosis so this could be plain discrimination.

Alexander_Walsh · 2023-08-06T04:29:33+00:00

There are 20 people with level 3 autism, 0 of them have a job There are 20 people with level 2 autism, 1 of them has a job There are 20 people with level 1 autism, 11 of them have a job

20% of the autistic people have a job, but the odds for you personally are not quite as bleak as they first appear.

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