Any fishies with disabilities?
In light of several recent topics I've come to wonder if any of you guys either are or closely know someone who is disabled or has some chronic illness or similar in some form. I personally am autistic which is considered to be a neurological developmental disorder and an interest of mine is similar atypical conditions whether mental or physical. I always enjoy meeting people who have similar conditions and learning about the ways they think about their condition and cope with their difficulties.
I have back and knee issues from military service.  Nothing super major, but at times I can't pick up my youngest, and have to ask my older four to get her.

The man I referred to as my "stepfather" (requiescat in pace) (he wasn't literally or legally, but it's a long story) had one leg shorter than the other from a VC machine gun.  It slowed him down, but he didn't let it stop him from hiking with me.  Granted, I did have to help him up some hills, but he was there. 

My oldest boy was diagnosed with OCD, which is a ***** to deal with. 
Our oldest daughter had an epileptic condition called infantile spasms as a baby, and now just has run-of-the-mill, hard-to-control epilepsy. Her case is considered cryptogenic, meaning they found no cause (yet). There is conjecture that many of the cryptogenic cases are from microscopic brain bleeds or injury during in utero development or delivery. Her brain was well photographed via MRI in the early days, but nothing was found. We do lots of genetic testing as stuff becomes available to see if we can pinpoint a cause.

With her epilepsy, she has co-morbid diagnoses of Autism (moderately-profound, she is minimally verbal and will always need care), OCD, anxiety and sensory dysfunction. She is also prone to debilitating migraines and facial tics. She has fine motor control issues and needs lots of help with self-care still. She also takes 5 daily medications to manage her neurophysiology, which includes 4 to manage her epilepsy proper and one to help with the OCD and anxiety. She also has a prescribed rescue medication (Ativan) for when her seizures pass threshold levels, which is thankfully very rare.

Our son has traits for high-functioning Autism, but has never been diagnosed. We never sought a diagnosis as it wouldn't change anything we do. He definitely has high oral motor needs and has many characteristics of sensory-seeking, especially vestibular. My husband and I have come to the conclusion that probably him (my husband) and his father are high-end spectrum as well.
My dear Mrs. JMichael is chronically ill with chronic and advanced Lyme Disease, several auto-immune diseases (yes, it's possible to have more than one!), the effects of a hand surgery that went south, and one or two other "little" things.  As lists go, it doesn't sound like much, but the ramifications of all of that are enormous.  She's been on Social Security disability for about 15 years now.  In addition to all of that, she has *me* to deal with! :O :grin:  Fortunately, we both have healthy and bizarre senses of humor, though not always at the same time. :LOL:
Permit me, please, to keep this brief.

In March 2012, I was diagnosed with Asperger's Syndrome, which - I think - is the most well-known of the illnesses on the Autism Spectrum of Disorders.

3 1/2 years before that, I was diagnosed with Obsessive-Compulsive Personality Disorder (OCPD). The personality disorder probably came from my late father's side of the family.

Around that same time, I found out I had Diabetes. It was probably inherited from my late mother's side of the family. It has since degenerated to Type One Diabetes, so I have to take insulin shots daily.

So I've been medically retired for the last few years and am on SSDI. And man, it just rots!  :(
Among the family, I and three of the five kids have celiac disease, and my wife has gluten intolerance. The twins have ongoing developmental issues as a consequence of having been two months premature, primarily eye-related these days, though one has occasionally displayed symptoms that almost remind one of autism-spectrum events. And, as J Michael said, they have to deal with having me around, poor things.  :LOL:

I know that ours are the small potatoes-version of disabilities. They loom largely in the family, though, in that my three younger brothers all have auto-immune disorders, too. Next younger brother and the youngest have celiac disease. The one in between has rheumatoid arthritis. Among their progeny are outcroppings of various auto-immunes as well. On the whole, we're very fortunate that all we normally have to contend with revolves around diet, no medicines and such.
Oh, you KNEW this one was coming at some point.  :LOL:

I have Systemic Lupus Erythematosus (Juvenile). It can affect almost every organ in the body so I have lupus nephritis which led to kidney failure. While rarer, it attacked my liver as well. So, liver disease. I have a bunch of secondary conditions: "anemia of chronic disease", hypertension and hyperparathyroidism (people don't understand that one, so I tell them it means I'm a ghost). I am on hemodialysis 3x a week for 4 hours and if I don't go, I'll swell up with fluid/toxins and die. I have Type 1 diabetes but it is well managed and presents no issues. Needles don’t bother me ever since the insulin pen came out.

When I was younger, I coped with it well. I was just an average kid that went to the children’s hospital every 3 months, had loads of blood tests, and hospitalized from time to time. It's when I got into my young adult years and had to "adult" that it got really difficult and changed my perception. I was extremely lucky that I was healthy enough to work/travel until a few years ago. Then, I knew I had to live with my parents and work domestically. Catholic guy after Catholic guy said a big NO because of the lack of baby birthing abilities. When I looked outside Catholic men, I found men that wanted casual stuff and thought illness = easy girl.  So, my diseases negatively impacted my life. Then, I see my friends getting promotions, having families, being adults and I can’t even walk some days. I feel like a complete bum but they think I’m a princess.  :eyeroll:

I used to be much more dignified and reliant upon prayer to manage. Prayed to particular patron saints and sought out examples of those that had lived with these kinds of crosses with blessed dignity. But things got worse and without much support, I'm not so positive. Now, I have some really ugly thoughts. Some days I wish I was aborted and I've openly expressed this with my parents. Abortion is murder, and I know it, but just in this one case, I think it would have been best. I’ll defend anyone else’s life just not my own. The only thing is that I wouldn't want that kind of grave sin on my mother's soul. Naturally, they always say, "God has a plan for you!" and "God loves you!" but I don't believe that anymore. Anywhere there is a church and I have family, they are praying for me. Some parishioner at a relative's church even took an intention about me to the Lourdes Grotto. The other day I was so tired and nauseated that when I went to bed I told my husband I hope I didn't wake up in the morning. Speaking of my husband, I wonder what people say behind his back. They must wonder if he has a deformity because he married the invalid. Out of all those years, and all those women, he married the defected one. Our marriage literally perplexes people. Healthy, athletic, handsome guy with a sick snail.   

I am extremely isolated. My friends are healthy so they don't understand. They think if they eat kale and go to CrossFit they'll live forever. My Catholic peers aren't much help either. It usually turns into a moral argument about organ donation so, I discuss nothing with them. And then, I am told that I should be "happy" that I'm pretty. As in, "Yeah, you're ill, BUT YOU'RE SO PRETTY! God blessed with you beauty! You have to be thankful for that!" As if “being pretty” compensates for being defective in more important ways. Actually, it makes things worse because there is more pressure to look half-decent. It's actually a curse. It doesn't matter anyways. Besides, people tell me, it's "not a big deal" compared to heart or double lung transplants. And I get that, I really do but I am still scared out of my wits. So, I just shut my mouth and end up having keyboard diarrhea like right now.

I manage by listening to a lot of esoteric black metal. At least that way I feel cleansed and at ease without having to talk to (bore/irritate) people or yell at them. I know a lot of guys in such bands and they "get me". I can talk to them and they think I’m interesting. Doing sports makes me feel "normal" and productive. I like the feeling of being productive and accomplishing things but it also upsets me I can’t compete at high caliber anything anymore. Joking and laughing at my disease helps too.

Other than all that, I am okay. Things can always be worse. I thank Our Lord that I don't have a more serious/rare condition that has no help (a heavier cross to bear) and that I have quality medical care. My problems are really quite small. I'm walking, talking, have all my senses, security, food, clean water, electricity, and a roof over my head. There are people whose suffering I cannot imagine that handle it much better so I just need to grow a pair and deal with it.
I experience unending chronic pain and discomfort all over my body, with a focal point in my lower back. This severely limits what I do can do physically and is generally disruptive, even though I look like there's nothing wrong with me. Almost worse than the disability itself is how easily it can be mistaken for an excuse for laziness.
(05-02-2017, 12:37 AM)Zubr Wrote: I am extremely isolated. My friends are healthy so they don't understand. They think if they eat kale and go to CrossFit they'll live forever. My Catholic peers aren't much help either. It usually turns into a moral argument about organ donation so, I discuss nothing with them. And then, I am told that I should be "happy" that I'm pretty. As in, "Yeah, you're ill, BUT YOU'RE SO PRETTY! God blessed with you beauty! You have to be thankful for that!" As if “being pretty” compensates for being defective in more important ways

I can relate on so many levels. We're the only Catholic family we know with a child with the behaviour problems/cognitive disabilities that my daughter presents. I mean, there are other kids with physical disabilities (but normal cognition), or other kids with ASD (but are much better functioning and without the epilepsy component), but it's not the same. It's like, no, we can't do that as a family (when invited to a "family event") because daughter will never tolerate that. No, we just can't leave her with a babysitter from down the street. No, magical special diets don't fix that's ailing her. The families we know that have children functioning on a similar level are pretty much all secular, and that presents itself with other problems.

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???

I just about tore a strip off of the doctor, and in retrospect I wish I had, but I was desperate to have my child evaluated so I let it slide. But that was 8 years ago, and I'm still fuming about it.
Some of you may want to check out this and this if you haven't already or haven't read similar things.  They have both proved to be very helpful.  Don't let the "Buddhist" aspect of the second one put you off--the practices the author uses and talks about and teaches will NOT "convert" you.  That is, unless you want to be converted. :) :) :)

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