Any fishies with disabilities?
#11
                                                                                              I'm in my mid 50's and feel amazingly well for long periods of time, but when my arthritis kicks in, particularly in my hands, it can be so bad I have to change my grip on a mug of coffee. Then in a couple days I can't believe my hands were ever aching.
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#12
Here's one.  I have moderate Schizoaffective disorder, basically half schizophrenia and half bipolar disorder.  It's very hard to deal with some days but easily managed with medication (which I don't always comply with).  I have one medication for mood stabilization and another for the schizophrenic symptoms.  I experience a good deal of auditory and visual hallucinations, along with some extreme paranoia (people in my house, following me, neighbors up to something, my food is poisoned).  I've been hearing a woman's voice for several years saying things to me from behind me or screaming at the top of her lungs downstairs, etc.  I've heard on occasion, a man in the backseat of my car ask me what the hell I thought I was doing.

However, I'm fully functioning and not on any type of disability.  I can work normally.  Sometimes I'll be in meeting or talking to someone and I can see bugs, shapes moving across the walls behind them.  At this point, I have no real issues determining what is fake and real but when I'm by myself it can get pretty tough.

Out of all my symptoms, the reclusiveness and paranoia are the worst because I can't shake the feelings.  It affects every decision I make, where I go, who I talk to, friendships I maintain, etc.

Most of the time, I'm okay though.  My wife understands and helps me through everything, makes sure I take my medicine.  She tells me that she can see it my face when I'm having a bad day.

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#13
(05-02-2017, 11:25 AM)PrairieMom Wrote: But the thing that p*ssed me off the absolute absolute most was when I had to bring Abby to the ER when she was about 3, probably for a high fever that we couldn't control I don't remember for certain. I remember explaining to the doctor about all her neurological issues, and how she's on anti-seizures, and we were told to bring her to the ER if her temp remain at X temp to be evaluated (because high temps themselves are a seizure-trigger for a lot of kids). She looked at my girl, head full of blond curls and said,

"It's too bad she's like that, because she's such a beautiful child."

I'm like, WTF???? What does one have to do with another, and why is it "too bad"???? Can't she be beautiful AND have ASD/epilepsy? Does that somehow diminish her physical beauty? (she really is lovely, with big, soulful brown eyes and this amazing blond hair now-wavy with these natural dark low-lites, tall is stature, full lips, etc) Or are you somehow inferring that she's somehow not beautiful inside???
Alright, that is one of the most messed up things I have ever read/heard. Some medical professionals truly lack any kind of bedside manner or tact. I would honestly expect to hear a comment like that from a random uneducated person but not a medical professional who should know that ASD/epilepsy doesn't diminish the spirit or personality of a child. Obviously, your daughter is beautiful, inside and out, because of who she is as a whole person.

I had a related conversation today with my "care coordinator" however it had a much more positive ending. She always addresses me as "gorgeous girl" to which I roll my eyes. First of all, I don't know why that adjective has to be used at all. It shouldn't even be a topic but whatever. She joked that I have "no flaws" so I said, well, obviously I do, cause I'm here, hooked to a machine. She said, "So what does that have to do with anything? O.K., you're here but that takes nothing away from YOU. YOU, the person. And any person that puts this (meaning sickness) ahead of you and your personality is small." The same could be said for your daughter. We're just people with conditions. It's an asterisk to who we are, major asterisks, but just a point. Am I 100% sold on the message? No. It's the stupidity of people that makes it difficult to believe. If people didn't point out it was "too bad" or "poor thing" to have one quality with the other I'd have a much more positive outlook. The good thing is that you are willing to go to bat for your daughter.

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#14
While my ASD probably isn't quite as limiting as your daughter's I can understand how you feel PrairieMom. I'm not a fan of functioning labels but practically speaking I'm more of moderate-high. I can generally communicate pretty decently but when I'm having a bad sensory day I imagine I'm a sight. I have a lot of trouble doing a lot of things which seem rather simple to most people but the way I appear to people they think something along the lines of "but you don't look disabled why can't you do this simple thing?"

Because ASD is an invisible disorder there always seems to be this initial disconnect between the way certain people think of us as a person and as being disabled. While my ASD does cause problems its still part of me as a person, not some sort of leech that takes away from me.

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