Food for thought..

[EmersonAilidh]

I've just been feeling a tad talkative lately.

 

Last week I walked to meet my friend Lauren so that we could go hang out at my house. When we got back, my copies of Cure Unknown & Saving Sammy were FINALLY waiting for me on my porch. I was ecstatic. Lauren didn't exactly understand, but oh well. When I cracked open Saving Sammy, my Grandma was a little less than sensitive. "Why are you reading a book about OCD???", she asked, while I sat there just repeating "S### S### S###" in my head.. At this point my friend Chelsea had joined, & I hadn't told either of them about anything but the physical aspects of the disease(s) that I deal with. So, as calmly as I could, I said "Well, Granny, everyone with P.A.N.D.A.S. has OCD.", to which she replied "Oh, that's cool. What are you OCD about??"

 

What am I OCD about?? Once I got over the initial shock of actually being asked that question, I started thinking. & I realized just how second-nature OCD becomes when you've been dealing with it as long some of us P.A.N.D.A.S. kids have. I thought back to the sixth grade, when desks being arranged in groups of anything but three would send me into a meltdown. When the only reason that I was ever late turning work in was because I would erase it over & over until my letters looked "right". When I would literally spend an hour or more each night "charting" my day; sitting at the computer & making a timetable for everything I had done from brushing my teeth to using the bathroom. Granted, it's not always the case, but I think that after obsessing over these things for so long that you almost stop thinking of them as OCD & more as just, parts of yourself. Quirks, almost. I STILL erase letters over & over until they look right, but when asked why I never respond with "I have OCD". That's just how I do it. I still want everything in threes; six bracelets on each arm, three rings on my fingers, three piercings in each ear... Everything. Our textbooks are numbered, & mine has to be a multiple of three. The other day I got textbook 33 & I was GIDDY. Laughing to myself in my chair over a number... You can just imagine how popular I am. With dates, if I can SOMEHOW add/subtract/divide/multiply the numbers to a multiple of three, it'll be a good day. In my first period classes my peers will see all of this seemingly random math on my paper & ask about it, but my answer once again is never anything about OCD. To me, that's just how I figure out whether today will be a good day or not. For example... 9-21-2010 is an easy one. Just add all the way across. 9 + 2 + 1 + 2 + 1 = 15. So, when asked a question as blunt as "What are you OCD about??", I actually had to think for a moment. & sometimes it's only when we actually sit & ask ourselves, "Hm. What all that seems normal to me is actually crazy to others??" that we realize just how different we really are.

I got dumped through a text message last Friday. Real mature, I'm well aware... I was with my BEST friend (Lauren) & two other close friends, but when I opened my phone & saw it I just said "I got dumped", started crying, walked out of the room, & started pacing. At the time, the fact that I was walking laps around my friend's entire house didn't even cross my mind. Sometimes we really have absolutely no idea that what we're doing is abnormal. My friends tried to talk to me but I just wanted to walk. So I walked, walked, & walked until I was so tired that I just laid down & passed out.

So, Granny, what am I OCD about??? If only I could begin to tell you. These crazy, crazy things are all I know.

 

Also, ever since the cognitive fog thread I've been trying to pay more attention to mine in effort to explain it better. I think I came up with a good example today. I'm a year or two ahead in math, depending on how you see it, which makes me a sophomore in advanced Algebra 2. I GET algebra, I understand it. Geometry not so much, but Algebra & I are friends. I made a 100 on a worksheet the other day, which was in all honesty a big deal, & the boy sitting next to me couldn't help but wonder.. You see, our calculators don't erase, just in case someone thinks it's funny to type "80085" or something. Anyway, me & this boy ended up trading calculators that day. After I made that 100 he looked at me & said "Emerson, I don't get it. You make great grades but I looked at your calculator & all of the math you've done is single digit stuff that an elementary schooler can do."

When I thought about it, it was true. I was the one up on the board showing examples when the class didn't understand, but I had to put four divided by two into a calculator. Negative two divided by two. Worst of all, I had multiplied one by two. It took a calculator to do it. It's hard to imagine until you've experienced it, but plugging things in formulas & equations isn't all that difficult. When it comes to actually processing information though, even imformation as simple as four divided by two, just forget about it. There's no way. It's like your brain is a clock, & when there's a formula & numbers in front of me everything moves smoothly & I can just put them where they need to go & solve it in no time. But give me a fourth grade multiplication problem & all of the gears stick & grind because they actually have to work, even if just a little bit. It feels like as if the hands of a clock just STUCK. Trying to move forward but their defective gears won't let them.

 

I would write more, but I'm already an hour late to bed. You can imagine how cool I am, the sophomore that is asleep by 8:30 every night.

Goodnight all! <3

Edited September 22, 2010 by EmersonAilidh

[pixiesmommy]

I absolutely get it, and I will tell you why. First of all, I am no math whiz, but I can memorize things (and so can Pixie) that will make your eyes spin. I was great with doing Shakespeare in high-school and placed in a lot of competitions just for the sheer ability to memorize (too bad I could not also simultaneously inject the proper emotion.) Also making me very popular (I struggled with mono in HS and was barely ever present and couldn't lift a textbook- wayyy fun!)

 

So, like you, I could memorize things but not actually put them into application a lot of times. For me, it was geometry and not algebra. I think I have some dysgraphia that was never diagnosed, actually. I knew all the theorems, etc, but unfortunately it was algebra that I had to pass to graduate, and not geometry!! I failed algebra 3 times and then 2 more times in community college, but had 2 perfect A+ years of geometry. People thought I had given up, but that was NOT the case. There are things I just can't wrap my head around no matter how I try, and man is that frustrating! because you know on some level they are simple, but you just can't beat it into your brain!!

 

With Pixie, we started seeing this as early as first grade. She would come home with the regular 2+2 problems and then there would be a challenge sheet with word problems or more advanced math, sometimes even multiplication... and she would get the easy problems (the REQUIRED ones for a grade) totally wrong and struggle with them to the point of tears, but then sit by herself and breeze through the challenge problems. She STILL does this. I actually had a teacher tell me that she was going to count OFF if she did the challenge problems because she was wanting to punish her for using her energy on those instead of the demonstrative ones for a grade. Of course, this is also the teacher that told me to spank her because she was having visual disturbances (that the teacher didn't believe) and that she kicked her son out and made him live in the garage one summer. But, I digress...

 

I think the thing about pacing when you got dumped sounds like a reasonable response, actually! Maybe it is because it sounds like something I would do, but it sounds like something ANYONE might do if they were really upset. I think maybe you are more "normal" than you give yourself credit for. ((hugs))

 

Thank you for sharing this.

Manda

[amyjoy]

Emerson, i think you are max cool, way cool, cooler than you can ever imagine yourself to be, until maybe one day when you are well, you will look back and go wow, look what I did, look what i got through, and maybe you will see yourself through the same compassionate eyes i'm sure you bring to others. I bet you are an awesome friend and just the exact kind of person i would be friends with if i was 15 and lived by you...kinda quirky, smart, definitely unique, infinitely looking to understand more, dealing with more than you should ever have to at your age in a way that makes you very deep. I'm sure you have amazing things in your future that you will contribute to this world in a way no one else can. I honor you and applaud and respect you and more than anything, wish i could be in a position to do something more to help you. But meanwhile, please know I completely and totally believe in you.

with love

amy

ps did you get a thermos??

[EmersonAilidh]

PixiesMommy ~ Random factoid, I don't plan on ever having kids but if I did I've always wanted to have a daughter named Pixie Nell. That sounds so much like me as a little one! I hated printing in the kindergarden & first grade just because of how particular I was with the letters (I would erase constantly back then, too. If only I knew that a decade later I'd still be doing it, haha) but when I wrote in cursive it was easier to deal with because it was all one motion so I didn't need to be so attentive about how each letter looked, if that makes sense.. Well, my K & 1st grade teachers were having none of that. We didn't even know anything was wrong at that point so we had no backup besides "She likes to write in cursive" so they just wouldn't grade anything that I didn't print. Funny how they squash advanced kids but cater to the lazy ones in school.

 

AmyJoy ~ Thank you very much! The few friends that I have are all most definitely quirky, haha. I'm very open about the physical part of the disease(s) but talking about the emotional/mental aspects of it is almost impossible. Not even so much that it makes me sad or anything as just, there's no way to make someone understand that. & also, after my years of dealing with all of this I've come to realize that nothing is more trendy than having OCD & Bipolar. Trying to get someone to take those two seriously is quite the task. "& when I say I'm obsessive compulsive I don't mean that I looked it up on Wikipedia & decided that being afflicted made me unique," is normally how I start that conversation off when it does come around, haha.

& not yet! Heading over to Target tomorrow to look for one though. Mom was only able to find one gfree soup at Kroger (Lentil something from Progresso) but that's better than nothing & I'm happy that she's starting to learn how to read ingredients!

 

I used to call brainfog "headaches" just cos I hadn't heard the term & really didn't know what it was until July or August. I even have posts on here complaining of "headaches" that were really just intense cognitive blehness. I thought of the best example yet today in class.

My friend Chelsea was having some people over to swim. I spent the night the night before & a few other people came over at around ten the next morning. We were all swimming & having fun. It was a very good day as far as symptoms go, there wasn't even any anxiety to be found. Those glimpses of clarity & normalcy are something that I cherish. But anyway, at one point I went inside & upstairs to grab my camera from my bag in Chelsea's room, then came back down & got back in the pool. That's when Lauren looked at me & went "Where's the camera??"

It was one of those epiphany moments. Oh my God. In the time that it took me to walk upstairs & back I had COMPLETELY forgotten that I even went inside for the camera. I got out of the pool & looked everywhere. I asked everyone how long I had been inside & they all said barely a minute, but when I came out I didn't have my camera. I checked where it had been before & it wasn't there. Moral of the story is, in the time it took me to run up & down some stairs I not only lost a $200 camera, but completely forgot that I had gotten it in the first place. That's the most prime example of what brainfog feels like that I can think of. It's like someone just stirred your brain up into mush.

Edited September 22, 2010 by EmersonAilidh

[EmersonAilidh]

Tired of posting so much so I thought I'd just bump this.

 

I packed my lunch today! A cheese stick, a fruit cup, some almonds, some cherry tomatoes, & one little EnjoyLife gluten-free chocolate chip cookie. It was wonderful!

I forgot just how much tired I get after I eat though. Picking up my pencil was just not an option when I went back to English class. It was the first time my teacher saw me like that (head bobbing, eye fluttering, pencil dropping) & she was really understanding. Also, a few days ago my shoulders started popping like my hips & ankles do. It doesn't hurt when my ankles pop, which happens literally every couple steps, it DOES hurt when my hips pop (quite so, actually), but oh my God. I was not prepared for my already pained shoulders to join the club. I sit in the desk next to the door in that English class & mustered up the energy to lean back to open it when someone knocked at one point. Bad move. Before my elbow (don't touch doorhandles with my hands, especially in public) could even reach the handle I HEARD it before I felt it. POP. The exact same sound my hip makes before I hit the floor. & oh, my, God, it was like nothing I had ever felt before. My muscles already ache terribly in that area (Dystonic posture), but that was just unreal. My right arm was pretty much dead for the rest of class.

 

 

Also, has anyone heard of wheat in almonds??? I'm almost positive I'm not allergic to nuts (I LOVE them & have eaten them for years with no problem) but when I got home I read the ingredients of everything that I ate because I felt bad after lunch & found the almonds. Ingredients : Almonds. May contain milk, soy, or wheat. Just thought that was a tad odd. Is this just a result from being processed in the same factory or something?

[norcalmom]

probably a factory thing. Do you do yoga or strech? I have the hip pop thing (along with ankles and other joints) - but I'm 45years old and have run several marathons (so I deserve to be in pain). You're so young for this - I'm sure its stress and/or postural thing..streching helps ALOT. Its hard to get to the correct muscles for it though, they are very deep. Below are some utube videos for psoas muscle streches.

 

You can also do it on edge of a bed or counter that is the correct height. Just put one leg up on the counter/bed - but behind you, so knee is down on bed, and standing leg is straight. Kind of like a balarina at a barre - but the leg is going behind instead of in front.

I like floor better, with front leg in lunge, and then you can move the angel of your hip around very easilty (and carefully!) just pointing your toes in a different direction will sometimes do the trick. Do it next to a bed or with a big excercise ball next to you for balance. That also helps bcs you can use it to hold onto and relax everything. Its something you can do literally for a few seconds every day, and it will make a difference. You may find that only one side is tight.

 

http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4SUNA_enUS247US249&q=hip+strech+soaz+#q=hip+stretch+psoas&hl=en&rlz=1T4SUNA_enUS247US249&prmd=iv&source=univ&tbs=vid:1&tbo=u&ei=BNGbTIbGI4--sQPb4ojvCA&sa=X&oi=video_result_group&ct=title&resnum=7&ved=0CDUQqwQwBg&fp=fd9f310bee2047fa

 

Good luck!

[EmersonAilidh]

probably a factory thing. Do you do yoga or strech? I have the hip pop thing (along with ankles and other joints) - but I'm 45years old and have run several marathons (so I deserve to be in pain). You're so young for this - I'm sure its stress and/or postural thing..streching helps ALOT. Its hard to get to the correct muscles for it though, they are very deep. Below are some utube videos for psoas muscle streches.

 

You can also do it on edge of a bed or counter that is the correct height. Just put one leg up on the counter/bed - but behind you, so knee is down on bed, and standing leg is straight. Kind of like a balarina at a barre - but the leg is going behind instead of in front.

I like floor better, with front leg in lunge, and then you can move the angel of your hip around very easilty (and carefully!) just pointing your toes in a different direction will sometimes do the trick. Do it next to a bed or with a big excercise ball next to you for balance. That also helps bcs you can use it to hold onto and relax everything. Its something you can do literally for a few seconds every day, and it will make a difference. You may find that only one side is tight.

 

http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4SUNA_enUS247US249&q=hip+strech+soaz+#q=hip+stretch+psoas&hl=en&rlz=1T4SUNA_enUS247US249&prmd=iv&source=univ&tbs=vid:1&tbo=u&ei=BNGbTIbGI4--sQPb4ojvCA&sa=X&oi=video_result_group&ct=title&resnum=7&ved=0CDUQqwQwBg&fp=fd9f310bee2047fa

 

Good luck!

 

I tried doing yoga off & on from the sixth to the eighth grade but my hips just made it impossible. Anytime I tried to stretch... POP. & then just too much pain. Oddly enough I'm weirdly flexible in my knees. I've been able to do the "Butterfly" stretch perfectly (knees totally on the floor) since the first time I tried it, & I used to be able to hook my feet behind my head, haha. I used to do jazz dance, admittedly for not that long, but trying to do a leg bar after my symptom explosion was just.. not happening, hahah. Even if my hip doesn't pop I'm so scared of it popping that I don't/can't exert myself.

I help the special needs kids at my school with PE also & I feel bad because I can't run or stretch with them. Once I see this new neurologist (Oct. 13th) that is going to look into the Epileptogenesis I'm going to ask about the Dystonia, too. Physical therapy sounds like it would be a Godsend.

Thank you for the ideas & advice!!

 

____________________________________________________

 

EDIT:

I know Dystonia is muscles & joint pain is different, but I figure a little physical therapy couldn't hurt for either.

Edited September 24, 2010 by EmersonAilidh

[pixiesmommy]

Popping- I have bone spurs and pop/have pain like crazy and chiropractic helps me. I don't know if your insurance would cover it, but it helps me to go every week for about 3 weeks if I have just started going (I have taken breaks before and regretted it!) and then every 3-4 weeks.

 

The lunch- I'm so proud of you for packing your lunch!!! Okay, now for the bad news and nit-picky stuff... that was A LOT of sugar. It may have been the wheat in the almonds (they often dust them with things so they don't stick together. I have good luck buying from a bulk bin, if your store has one...) BUT you probably get sleepy from the sugar crash too.

 

A cheese stick- sugar from the dairy

a fruit cup- sugar from the fruit

 

some almonds- good protein!! (leaving aside the possible cross-contamination here!)

 

some cherry tomatoes- not bad, some sugar but minimal

 

one little EnjoyLife gluten-free chocolate chip cookie- sugar!!!

 

 

If you want to be alert after you eat, you need to feed your BRAIN. You want LOADS of protein and LOADS of fat. I know, fat??? YES!!! Sugar is going to do so many bad things to your body right now. You are wearing out your adrenal glands by eating it and all of your organs are getting just exhausted. If you have a *little* with protein, you slow that effect down a lot and can process it better.

 

Here are some ideas (I think I asked before, are you veg? I'm assuming so, so these should work anyway...)

 

-Nuts are great for quick protein but you want to make sure you aren't stuffing yourself with lots of Omega 6's and no Omega 3's.

 

Omega 3's are ANTI-inflammatory and 6's are INFLAMMATORY. You definitely want more 3's!!

 

Try for seeds too- flax, pumpkin, sunflower. Walnuts have some 3's too, so those are good.

 

Beans/lentils: Lentils cook up pretty quickly and you can spice them however you want (make sure your spices are GF!)

 

Eggs- someone mentioned this already, but especially if they are free-range, then you are getting lots of good 3's here

 

Dairy- ehhhhh... grass-fed is best, but expensive and hard to come by unless you happen to have a really cool farmer's market- just ask questions. Raw/grass-fed is best, but again, harder to come by and illegal in some states. Use it minimally because it does have a lot of sugar. Plain yogurt is best because it has some of the sugars "digested" by the culturing. I know, I know.. this is complicated!! At least try for organic and don't eat loads of dairy is the main point!

 

 

Go easy on the fruits and heavy on the leafy greans!

 

 

Fats: These are ones that are NOT going to raise your cholesterol or make you gain weight, etc. They are saturated fats from nature, as nature intended. This is all politically incorrect nutrition

 

-Organic Extra Virgin Coconut oil is the easiest one and for the money goes the furthest, IMO. We eat it with a spoon here, put it into smoothies, or grind up some nuts with it, etc. It's pretty melty, so beware! But you can do something like stir some into applesauce or whatever for a quick dose of fat to feed your brain. (I buy mine online at vitacost.com)

 

-Grass-fed butter

 

-Extra virgin olive oil (but not for cooking, just cold!)

 

-Flax oil

 

 

 

Those are a few. You absolutely want some fat in your lunch along with the protein! Here is an example of what I would pack for Pixie for lunch, just to give you an idea:

 

Lunch 1:

-filtered water to drink

-lentils w/chili powder seasoning, drizzled heavily with olive oil

-a few rice chips/crackers and raw broccoli w/hummus for dipping

-one or two apple slices w/nut butter

*starch from the rice and the apple are plenty of sugar

 

Lunch 2:

-organic coconut water (this might be hard to find but good for hydration!!)

-handful of plain pecans or walnuts

-a few cubes of cheese

-carrot sticks

-skewer of lima beans

*this one is more sugar-heavy- starch from limas, sugar from carrots and cheese

 

 

I hope this helps! I tried not to be TOO overwhelming. It's like a boot-camp, really HAHA! Too bad you aren't closer so I could cook for you.

 

Maybe if you do some prep like chopping up raw veggies one night, sorting out nuts into baggies another night, etc. then it would not be so hard to grab something. I know this is much easier said that done though. ((((hugs)))))

[EmersonAilidh]

Manda ~ I'm doing the best that I can. :/ I've been gfree for about four months now, & I've gotten to go to Whole Foods twice. Not for lack of motivation by any means, but I don't have a car, I don't have money, I can't do it for myself. You buy food & cook gree, healthy stuff for your kids, but that's just not how it is over here. As I've said before.. In this house everyone but me lives off of Chef Boyardee & Ramen noodles. My point being, if I were to try to make my diet anymore restrictive, I'm pretty sure I just wouldn't be able to eat, haha. The day antibiotics come my way, I will ABSOLUTELY cut any & all sugar right out of my diet because it will be beyond necessary, but right now I just can't. I get my license in February (assuming I don't have freaking Epilepsy, in which case I most likely won't be allowed to drive for at least two more years. Please pray for me on that one), & then I can go to Whole Foods as often as I need to. For now, the only places we have down here are Kroger & Wal-Mart. Kroger actually has a little gfree section (much of it requested by yours truly ), but I don't think Wal-Mart likes to acknowledge that restrictive diets exist. Not only do they not carry gfree stuff down here, they don't carry anything vegetarian or vegan either. No MorningStar Farms, Boca, or Amy's Kitchen. I basically just take it as a big middle finger straight from the Wal-Mart corporation to my nutritionally challenged face.

 

The day that I am able to drive (which WILL be in February. I am thinking positive!!) I will open this topic right back up & make a shopping list. For now, what I'm eating/packing is all that I can do & I'm pretty proud of myself.

 

Also, the sugar has nothing to do with the sleepiness. I tried cutting out all sugar in the first semester of my freshman year just to see if it would help me stay awake, & it made literally absolutely no difference. Whether I ate something heavy like bread, light like lima beans, or ANYTHING else.... I'll be asleep within the hour. It's just how it goes.

[momcap]

Hi Emerson,

 

I just wanted to say thank you for your openness and honesty on this forum. You are such a brave person and I applaud your courage. The more I read on this forum, the more I am convinced that I had PANDAS as a young teen. My mother took me to every doctor she could find and we never really got any answers. I am one of the lucky ones because my symptoms diminished greatly in my late teens, and were completely gone by my mid twenties. Now that I'm trying to sort out the physical and emotional distress in my 7 year old ds I am having an A-HA moment, realizing how many of these same things I dealt with, just in different ways.

 

Your math example made me laugh out loud. I'm the same. I breezed through every math class I ever took, even getting 90s in university calculus without going to class. But I still need a calculator for simple math, and I'm ashamed to say I never memorized my times tables.

[EmersonAilidh]

Hi Emerson,

 

I just wanted to say thank you for your openness and honesty on this forum. You are such a brave person and I applaud your courage. The more I read on this forum, the more I am convinced that I had PANDAS as a young teen. My mother took me to every doctor she could find and we never really got any answers. I am one of the lucky ones because my symptoms diminished greatly in my late teens, and were completely gone by my mid twenties. Now that I'm trying to sort out the physical and emotional distress in my 7 year old ds I am having an A-HA moment, realizing how many of these same things I dealt with, just in different ways.

 

Your math example made me laugh out loud. I'm the same. I breezed through every math class I ever took, even getting 90s in university calculus without going to class. But I still need a calculator for simple math, and I'm ashamed to say I never memorized my times tables.

 

You're definitely not the first Mom on this forum to come to that realization! With the high incidence in siblings & other familyties, I don't think there is any way that P.A.N.D.A.S. can NOT be genetic (although not in all cases). I'm glad to hear about you getting better though!! Gives me hope. & thank you! I love helping. <3

 

& exactly! I had a math teacher call me out into the hall one time because she was so confused about a test I had taken. I was in Algebra I in the eighth grade at this point. She just looked at me & she was like "Emerson, I know you're not cheating, but I'm so confused. You don't show any work that we actually teach in this class. It's all just simple math." I really just had nothing to say to her, so I just told her that that was the math that I needed to actually "work" to get the problem. As backwards as it all sounds.

[pixiesmommy]

You are definitely in my thoughts, and I do wish things were different for you in terms of support at home, especially with the dietary issues. I have lived it, so I know what you mean. Please don't think that you aren't doing an AMAZING job, because you ARE!!! I'm so sorry to hear that cutting the sugar didn't help- that was definitely a big one for us, though Pixie does still struggle with exhaustion/fatigue, it is less extreme now.

 

Please let us know if there is anything we can do on our end to help!

[EmersonAilidh]

You are definitely in my thoughts, and I do wish things were different for you in terms of support at home, especially with the dietary issues. I have lived it, so I know what you mean. Please don't think that you aren't doing an AMAZING job, because you ARE!!! I'm so sorry to hear that cutting the sugar didn't help- that was definitely a big one for us, though Pixie does still struggle with exhaustion/fatigue, it is less extreme now.

 

Please let us know if there is anything we can do on our end to help!

 

You & your blog both already help me immensely! Thank you so much.

[momto2pandas]

Emerson - I didn't read this whole thread, but I think you probably have joint hypermobility syndrome. Has that already been diagnosed?

 

Funny about the math stuff, I was like that most of the way through college. I couldn't remember ANYTHING, but I could derive ANYTHING. I was always getting dinged on math exams in college for deriving all of the theorems I needed for proofs rather than citing them by name. My profs used to tell me that it showed "mathematical genius" but that they still needed to take points off...I just plodded along like that because there wasn't really any other option, and on balance, the advanced math classes were my easiest ones.

 

I've always envied the calculator-brain math gurus. They have a skill that's useful. My math-brain isn't very useful. I got straight A's through graduate level math classes at Harvard, but calculating the tip at a restaurant still makes me dizzy...

[EmersonAilidh]

Emerson - I didn't read this whole thread, but I think you probably have joint hypermobility syndrome. Has that already been diagnosed?

 

Funny about the math stuff, I was like that most of the way through college. I couldn't remember ANYTHING, but I could derive ANYTHING. I was always getting dinged on math exams in college for deriving all of the theorems I needed for proofs rather than citing them by name. My profs used to tell me that it showed "mathematical genius" but that they still needed to take points off...I just plodded along like that because there wasn't really any other option, and on balance, the advanced math classes were my easiest ones.

 

I've always envied the calculator-brain math gurus. They have a skill that's useful. My math-brain isn't very useful. I got straight A's through graduate level math classes at Harvard, but calculating the tip at a restaurant still makes me dizzy...

 

I know a bit about Ehlers-Danlos, & I think that those two are a lot alike.. So forgive me if I'm off base here because I'm just looking up "Hypermobility" on Wikipedia.

I used to be able to put my feet behind my head, but now I can't. That's the only thing that makes me think it's not a problem having to do with flexibility or collagen or anything like that. My hips hurt too bad to do it. I've tried, but before I can get my feet far enough my hips POP & I take a tumble. Although, I can bend both of my thumbs back to my forearm, I can easily lock four of my fingers, & I can lock all of them if I try. I always use it to freak people out.

I'm not really in any situations to see how easily I'm injured, haha. I'm the least athletic person you'll ever meet. My hips/knees have hurt to bad to run for the past three years, & even then I've only ran ONCE in the past five years. I don't do sports or anything like that. My hips/ankles/now shoulders just pop while I'm walking or doing normal tasks.

I also have a droopy eyelid. I'm just matching things up with the criteria now, hah. I don't really understand what "papyraceous scarring" is, but I have scars ALL over my knees.. Can't wear skirts. Too self conscious. My skin isn't very stretchy though.