Current mood:

confused

eds thoughts.
i dont known if i should seek out a diagnosis for my EDS (ehlers danlos syndome) . I'm afraid of workmens comp having issues with the subsequent treatment iv needed and will need..i dont want them to back out or not allow follow up treatment and tell me its a preexisting condition or some crap. cuz its not, well the EDS is yes  but most people dont understand EDS. i have this condition.. and b/c of this, in a 'normal person' it wouldda healed in oh.. 6-8 weeks. it was so small of a break it didnt even show up on xrays... but in me,  it took over 6 months for my tiny fracture to heal..and subsequently, the way i sprained my foot (bending itself in half) i believe i stretched out the ligaments even moreso than usual (been told by numerous PT's that my ligaments are loose) and that could be why im having the neuroma issues.. ligament is stretched out, makes the bones in my foot rub together more, pressing on the nerve..causing inflammation right there...causing my neuroma. makes since to me.

not to mention.. what if something else happens and i hurt myself again at work? will my having EDS mess up any future claims if god forbid, i need them?

i want to talk to my foot doc about it when i go in next...the nerve is waking up from my cortisone injection (having to ice it often and can feel the nerve in there stabbing me periodically if im on my feet too much) so probably in another month i'll wanna go in again to talk to him about my options and maybe get another shot if he'll give it to me..  even tho i know its temporary. it has been a godsend this last month and 1/2+. but mom doesnt think i should tell him. shes afraid of repercussions. with all the issues she had w/ workmens comp, i dont blaim her.

i know i have it. i have no doubt. the genetisist that saw christy and mom, said i have 100% i have it too based on my symptoms and hte fact that they have it too.

-loose joints/ligaments in my feet
l-oose joins/ligaments just about everywhere else too.. main one being my hips that like to subluxate and cause lots of pain if im not careful, dont keep up with my pt excersises and/or wear that damn sacroilliac belt.
- but on the flipside of that, i have extremly tight muscles in my legs.. PT said it was b/c my hips were loose and the major muscle groups in my legs are
overworking to compensate for it...
-see through/transparent skin *no idea if my skin would be classified as velvety or not, iv been told i have excessivly soft skin but eh?
-numerous twists/sprains/strains since i was a kid doing seemingly normal crap - iv never hurt myself doing dangeous stuff, only things like....gasp! WALKING! haha .  some minor, some requiring a few wks to heal
-slow healing time
-i bruise pretty easy and sometimes break out in bruises for absolutly no reason. i'll get up to 7 or 8 bruises on each arm and leg.. all at once, for no reason.
-didnt walk till i was 17months. mom said it appeared i was horrible pain when i'd put weight down on my feet
-didnt lose my baby teeth till i was 15 yrs old..
-novacane doesnt numb me right sometimes. wears off too quickly

its weird, since the whole..discovery of EDS since that nurse i worked with who has it and told me about it..
it makes me wonder about other things i just figured were normal. and probably are.. but i dont know.

like.. i pop a lot. and my joints are pretty sore sometimes, usually morning or if im sitting in one place too long. doesnt bother me, im use to it. guess sometimes it makes me feel kinda old but eh. i usually attribute it to inactivity..i think it hurts just cuz i should be moving more or something? and like when i work my 12hr shifts..im really sore and stiff in my hips and shoulders and well, feet obviously afterwards. but i think thats normal. i dont think its an out-of-shape thing or an EDS thing..i mean, geez. iv been on my feet running around 12 hrs and lifting people sometimes.. wouldnt non-eds'ers be sore?

and how my joints will like.. well, iv never had a dislocation but often i can sorta pop things to where they are almost dislocated- subluxating i think. - my hips and my shoulders and stuff. hips espically. try not to do it cuz it hurts if i do it too much and it gets to be too easy to do. i dont want to induce an actual dislocation

i get this annoying..like, pain/cramp/something? in my hips if i sit a certain way or have my legs spread or whatever. different things cause it. but it hurts really bad and its almost like a cramp in my hip but not quite. some of my PT hip excersises cause it. i dont know if thats a subluxing or not..it almost feels like my femer is trying to pop out of the hip socket.
 i know my sharp shooty pain is when i walk, thats what the pt folks told me. the ligaments are too loose in my sacro illiac joints. different part of my hip..
.
i can also put my feet side to side, but how they shouldnt be. like the outside of my foot lined up against the inside of the other foot.. kinda tweaks my hips to do it but its easy. i dont know if thats normal, or if i can attribute it to eds.. it makes me wonder how much of what my body does is normal for everyone, and how much is EDS related..
i can bend my fingers and stuff back more than 90 degrees, moreso when i was a kid but still can.

if i stretch a lot and get to where i can touch the floor really easily.. then my hips start going out of joint if i dont also follow up with lots of pt excersizes to stengthen the tiny little muscles in there..

mom wants to make an appt with her geneitists and bring me, just to see. i cant get offically diagnosed by her b/c i dont have kaiser anymore but mom wants me to go. she wanted me to go when she got diagnosed but i couldn't.
she said christy has it, i have a lot more of the flexiblity stuff than she does. christy has the bad arthritis in her joints and they dont move much anymore.

i'm afraid of the arthritis. and i feel like i will have it as i grow up. i think i have it in my right hand, it flares up sometimes and really really hurts to type/write/hold anything etc. usually after a period of using it tooo much and then its all painful for a wk or so.. i dont know if thats artitis or not. mom thinks it is. it helps to do excersizes for hand arthritis.

 i have to take care of myself now. to prevent things from getting bad as i get older. im only 23.. i have time.
thats sorta why i also would like the diagnosis. it doesnt mean anything to me, i mean, i know i have it. but it would provide the means to get the proper help in preventing damage and over stretching and crap..cuz when i stretch somehting out, it doesnt tighten back up..

i don't know.. i also think it would be benifital for my orthopedic suregon for my foot to know.. cuz if i ever did get to the point where id need surgery for my neuroma.. or any surgery for that matter, theyd need to use a different kind of stitch so my skin would hold it. i dont want years of moms issues of stitches undoing themselves and healing taking forever and a day..and the docs having NO idea why.

and cuz i guess im suppose to get an Echocardiogram every 5 yrs to check for mitral valve prolaps. the one i just got didnt show anything. yay =)

and like mom..who after having a c section with me, all of her internal stitches just undoing themselves.. and she hemmorgaed for 24hrs an dneeded 10 units of blood. its scary..

i dont view it as anything different in my life like my sis does. it just gives a name to my accident prone weirdness hehe its nice to have a name for it.. and to know me and mom arn't the only "freaks" out there hahah ;)

but..i just don't know abotu this diagnosing thing. if i know it wont hinder me..then sure why not. and it could be good. but what if it jacks me over in some way?
gahh....