I have the tools but can't use them. page 3

[Gravyboat]

Okay, that's just weird. You're the only other person I know who can't eat off of wooden things. Popsicle sticks send me into a meltdown. Nails on a chalkboard, no problem. Wood on teeth? Total flip-out.

Yeah, it's basically like how a normal person would react to a giant spider dropping onto their face. Just thinking about it makes me want to scratch my teeth to get the feeling out.

[Crabbcakes]

Hi No, I've never gone to therapy for it. My mom has always just sighed exasperatedly and rolled her eyes at my "weirdness". So I just deal with it however I need to. I used to not be able to wear any clothing with tags or pockets or rough seams, or white clothing (bleaching made the fibers rougher and it felt like sandpaper to me). I still hate socks and still can't stand loud noises. Some colors make me feel nauseous (especially pinks and oranges). I still have aversions to certain textures. I used to have a problem with touching paper, and I still can't stand the idea of eating anything off a wooden stick. Thinking about biting down on wood makes me want to scream in horror. I also can't stand repetitive, absentminded rubbing, like if a partner is sitting next to me on the couch with their arm around me and keeps brushing their thumb against my skin. That is excruciatingly painful, but I feel bad for having to make a big deal about it.

It's never been anything that severely affects my ability to live life, I just have to do things a little differently sometimes. And I get a little sick of hearing things like "WELL YOU WOULDN'T GET BLISTERS ON YOUR FEET IF YOU WORE SOCKS!!!"

I'm gonna probably call you things like "Sweetie" a lot, because I sooo feel for you right now... but if you ever get tired of living life like this, I know for a fact that there are very, very good therapy centers in Cleveland. And I know because we used to practically LIVE at the Cleveland Clinic main campus over on Euclid / Carnegie. And we still go up there regularly for lots of different stuff for Major-daughter.

Your form of SPD is classic hypersensitivity in all senses. I don't know how old you are, but there is a LOT out there these days. The understanding and treatment of SPD has progressed light years in the last 10 years alone, what with all the autistic kids these days (they all have SPD).

I have to ask you again, because I am astounded that you know about sensory disorders without ever having seen a therapist - how do you know about this?? I, myself, had never heard the term until the docs handed me the diagnosis with Major-daughter.

[Gravyboat]

I'm gonna probably call you things like "Sweetie" a lot, because I sooo feel for you right now... but if you ever get tired of living life like this, I know for a fact that there are very, very good therapy centers in Cleveland. And I know because we used to practically LIVE at the Cleveland Clinic main campus over on Euclid / Carnegie. And we still go up there regularly for lots of different stuff for Major-daughter.

Oh yeah, I went there earlier this year for a sleep study. I wasn't super impressed with their care. I'm almost never impressed with doctors, though. I have a lot of other conditions and most doctors have just shrugged and gone "idk lol". It took me something like 6 years just to get a doctor to test me for PCOS (which isn't even rare!). I knew I had it, but no one would take me seriously. Pretty much every problem I've had, I've lived with without treatment, and if I've fixed it, I did it on my own.

Your form of SPD is classic hypersensitivity in all senses. I don't know how old you are, but there is a LOT out there these days. The understanding and treatment of SPD has progressed light years in the last 10 years alone, what with all the autistic kids these days (they all have SPD).

I'm 25.

I have to ask you again, because I am astounded that you know about sensory disorders without ever having seen a therapist - how do you know about this?? I, myself, had never heard the term until the docs handed me the diagnosis with Major-daughter.

Actually, I found out about it because I'm also synesthetic. I guess they tend to overlap. In both cases, the neural connections are abnormal. I only found I was synesthetic after trying to explain to many people over the years how I see time visually, or how that color tastes so sweet, or how "church" is such a yellow word. Etc. People kept thinking I was nuts, being metaphorical, or joking. So I ended up doing an internet search and that's how I found out.

Then I was on a synesthesia forum many years ago and people were talking about, for example, not being able to touch certain textures without freaking out. And I was like "OMG ME TOO". So that's how I found out about SPD.

[Uncephalized]

Fast until you are legitimately ravenous, then whatever you eat will be delicious.

+1

Hunger is not called the best sauce for naught.

Edit: interesting about the SPD symptoms, I didn't know that existed, though it makes sense. I have something similar (much milder), mostly with aversions to certain textures and sounds (for instance the sound of metal rasping over paper makes me want to shut my ears and run away, and I'm getting spine shivers just sitting here thinking about it lol). I was also an extremely picky eater as a kid and still am to some degree now (24), though much less. Most sauces and condiments make food taste completely unpalatable to me; I often get weird looks or comments because I can't stand salad dressing, mayo or mustard. Things that most people seem to eat without hardly even noticing they're there can make something inedible to me. For instance the "spread" they put on the burgers at In 'n' Out tastes like someone stirred some copper pennies into battery acid and splashed it on some meat. I don't even like to hold it near my face much less put it in my mouth. Apparently I'm not just picky, I have a disorder!

Oh yeah, don't even get me started on artificial fragrances and perfumes. And I totally know what you're talking about with certain people smelling really weird and no one else seems to notice it. Some people's--particlarly certain men--natural odor smells literally like crap to me, and no one else seems to smell it. Luckily my wife smells delicious. :-) Of course I probably wouldn't have stayed with her if she didn't.

[Crabbcakes]

Actually, I found out about it because I'm also synesthetic. I guess they tend to overlap. In both cases, the neural connections are abnormal. I only found I was synesthetic after trying to explain to many people over the years how I see time visually, or how that color tastes so sweet, or how "church" is such a yellow word. Etc. People kept thinking I was nuts, being metaphorical, or joking. So I ended up doing an internet search and that's how I found out.

Then I was on a synesthesia forum many years ago and people were talking about, for example, not being able to touch certain textures without freaking out. And I was like "OMG ME TOO". So that's how I found out about SPD.

Wow. I know what synesthesia is, but don't have anyone in my life with it. Thanks for being so open. I just get all protective and stuff about people who have SPD and end up living much harder lives than they have to because someone in their lives dropped the ball on their care.

I'm sorry you got crap care at the CCF. If it wasn't too far back (and if you really care any more to), you really might want to complain to the Ombudsman. You might get some satisfaction. 99% of our care has been good there - we even did the sleep study with Major-daughter. I make jokes that the only three places we haven't seen are oncology, transplant medicine, and nephrology, and that would be close...

Yeah, I do a lot on my own as well, just because I think no style or branch of medicine has ALL the answers. I just tell the docs that I have one foot in allopathic medicine - them, and one foot in alternative medicine, and I always let both sides know what is up with the other. If anybody has a problem with that, I change docs - from either side. It has worked well so far.

I have read some of your posts elsewhere on this forum, and know you have / had a ton to deal with. Just tell me that you are taking care of yourself, ok?

[Gravyboat]

Apparently I'm not just picky, I have a disorder!

Well, keep in mind that everything's on a spectrum from 'normal quirks' to 'debilitated'. I consider my own SPD to be very mild, because it really does not interfere with daily functioning at all. I just tend to be naked all the time. Honestly, though, I barely even think about it, because my workarounds have just become a part of life. And as far as most other people can tell, I'm just quirky. (Now that's putting it nicely )

[Crabbcakes]

.
Edit: interesting about the SPD symptoms, I didn't know that existed, though it makes sense. I have something similar (much milder), mostly with aversions to certain textures and sounds (for instance the sound of metal rasping over paper makes me want to shut my ears and run away, and I'm getting spine shivers just sitting here thinking about it lol). I was also an extremely picky eater as a kid and still am to some degree now (24), though much less. Most sauces and condiments make food taste completely unpalatable to me; I often get weird looks or comments because I can't stand salad dressing, mayo or mustard. Things that most people seem to eat without hardly even noticing they're there can make something inedible to me. For instance the "spread" they put on the burgers at In 'n' Out tastes like someone stirred some copper pennies into battery acid and splashed it on some meat. I don't even like to hold it near my face much less put it in my mouth. Apparently I'm not just picky, I have a disorder!

Oh yeah, don't even get me started on artificial fragrances and perfumes. And I totally know what you're talking about with certain people smelling really weird and no one else seems to notice it. Some people's--particlarly certain men--natural odor smells literally like crap to me, and no one else seems to smell it. Luckily my wife smells delicious. :-) Of course I probably wouldn't have stayed with her if she didn't.

Uncephalized, just FYI - my daughter's OT (very smart lady) told me this: everybody has sensory difficulties. Seriously. Everybody has things they can't stand that others think are nuts, or cravings for certain sounds or movements or textures... it is when these over- or under-sensitivities start causing problems in the living of your daily life that therapy is in order.

There are seven senses in the OT world - the classic five, plus two more (proprioception: feedback from the muscles and joints and vestibular: feedback from the movement of the head). Practically nobody has heard of them outside of the therapy world, but they are simply senses just as important to our correct functioning as hearing, sight, smell, taste and touch. IMHO, they should be taught in grade school, along with the others. The only one Major-daughter doesn't have problems with is smell.

[Gravyboat]

Wow. I know what synesthesia is, but don't have anyone in my life with it. Thanks for being so open.

Lol, it's basically the same as the SPD for me. I don't even think about it most of the time because it's just how my brain works. It also used to be pretty pronounced when I was younger, and was pleasurable and beautiful. But it's faded a lot over time.

I just get all protective and stuff about people who have SPD and end up living much harder lives than they have to because someone in their lives dropped the ball on their care.

Understandable. My mom dropped the ball on a lot of things. Frankly, this was nothing compared to some of the other things she did/didn't do.

I'm sorry you got crap care at the CCF. If it wasn't too far back (and if you really care any more to), you really might want to complain to the Ombudsman. You might get some satisfaction.

It wasn't anything huge. The doctor I had in the sleep department was a junior doctor in training or something. And when my results came back, he told me he thought I should try melatonin and light therapy. Then he conferred with his superior and they backpedaled and said "Oh wait, no, we just want you to try harder for a few weeks, keep tracking every night, and if you still can't sleep normally in a few weeks we will set you up with a therapist who will tell you how to wind down before bed, etc." And I was like "Are you fucking kidding me, bro? I haven't been able to sleep correctly EVER in my ENTIRE LIFE, and you want me to just try harder??? Fuck off." so I went home and did the melatonin/light therapy on my own and it worked. :P

Yeah, I do a lot on my own as well, just because I think no style or branch of medicine has ALL the answers. I just tell the docs that I have one foot in allopathic medicine - them, and one foot in alternative medicine, and I always let both sides know what is up with the other. If anybody has a problem with that, I change docs - from either side. It has worked well so far.

I wish naturopathic doctors were covered by insurance in Ohio, don't you?

I have read some of your posts elsewhere on this forum, and know you have / had a ton to deal with. Just tell me that you are taking care of yourself, ok?

I'm doing the best I can with what I have. Just trying to make the best decisions day by day. Doing better right now than I have in years, even when under mountains of stress that would have destroyed me before. Honestly, the worst thing I'm dealing with right now is being poor! And that's just a normal-person thing to deal with, so I feel like I'm doing pretty well.

Feel free to stop by my journal or send me messages whenever you want! You seem like such a sweet person and I would love to be friends.

[jammies]

Hi No, I've never gone to therapy for it. My mom has always just sighed exasperatedly and rolled her eyes at my "weirdness". So I just deal with it however I need to. I used to not be able to wear any clothing with tags or pockets or rough seams, or white clothing (bleaching made the fibers rougher and it felt like sandpaper to me). I still hate socks and still can't stand loud noises. Some colors make me feel nauseous (especially pinks and oranges). I still have aversions to certain textures. I used to have a problem with touching paper, and I still can't stand the idea of eating anything off a wooden stick. Thinking about biting down on wood makes me want to scream in horror. I also can't stand repetitive, absentminded rubbing, like if a partner is sitting next to me on the couch with their arm around me and keeps brushing their thumb against my skin. That is excruciatingly painful, but I feel bad for having to make a big deal about it.

It's never been anything that severely affects my ability to live life, I just have to do things a little differently sometimes. And I get a little sick of hearing things like "WELL YOU WOULDN'T GET BLISTERS ON YOUR FEET IF YOU WORE SOCKS!!!"

I absolutely cannot stand the thought of biting onto the wooden popsicle sticks either! Never heard of anyone else like that. My other one is the feel of corderoy on my hands. I hate it! If I walk through a department store and accidental run my hands over corderoy pants it makes my skin crawl!!

I have a nephew who has some peculiar issues like this too. I feel bad because his family won't accept it as really and forces him to do the stuff that freaks him out. Makes me sad.

[Gravyboat]

I have a nephew who has some peculiar issues like this too. I feel bad because his family won't accept it as really and forces him to do the stuff that freaks him out. Makes me sad.

That sucks. I know how it is after years of my mom screaming at me to put on clothes. Feels bad, man.