My EDS related adventures!

woa its been awhile..

2012-01-23T03:58:00.000-08:00

well, life has been busy. Overall good, but busy.

Biggest news... I'm engaged!! He proposed on Christmas =) I think we're gunna aim for April or May 2013, as I'd like us to get on top of the debt a bit more, AND need time to plan and put aside money for it, AND i wont be able to get real vacation time till then.. (everyone has already put in for vaca's this year, and i wont have the hours saved up anyway for it). I'm pretty excited.. surprised the smeg outta me! I was speechless. heh in the best way possible =)

I've had about 1/3 of the energy level I usually do (which is a pretty damn low level to begin with so in that way I'm not doing so hot lol) and its taking its toll. Ive been sleeping even more than usual, and have slept roughly 24hrs more days than I care to count recently.. not sure whats up, but I'm gunna try to find the iron supplement i was taking before I moved, and start that up regularly again. Its this really nice one that came highly recommended from the supper supplements place I would get it.. All I know is that it was in a yellow box or a yellow bottle (bottle had capsules, box had big rectangle pills), both smelled horribly because it also had a bunch of Vit B's and vit C.. it had pictures of red blood cells on the front and i believe the iron was 75mg Elemental iron but i could be wrong on that. But i can't find it locally so far! Doesn't help that I can't remember the name.. lol But I did just find out that the special supplement store I would get it up north has opened up a couple stores down here in the last year! Including one that opened a couple weeks ago only 6 miles away! They were closed today when I went to check em out though =(

Also, the whole right side of my body is messed up... HUGE knot over my SI joint that i can't seem to make go away or get smaller. Ileotibial band down my thigh really hurts, with lots of bumps again.. and a big very very tender spot/knot? on my thigh, near the outside and top of it close to the IT-band that is increasingly hurting. Its super tender to the touch and feels deeply bruised, without evidence of bruising.. And my spine is messed up, i can't seem to get it to line up in the right spot, starting mid-back. Super tender around specific vertebrae and subsequent knots. =( I'm starting to want to take too much aleve again, so I gotta find something else to get things lined up again. Just not sure what... Up north, I knew that really gentle chiropracter, she was awesome. And i have my Physical therapy, but im having a hard time with it cuz it all hurts to begin with, with these big knots and things being in the wrong spot, i can't seem to activate the right muscles.. I know a chiro down here,and he is really good, but he is far from gentle. He is the usual snap-crackle-pop type..and last time i saw him, things quickly slipped right back out again.

I applied some Topricin and BenGay tonight.. gunna tyr to keep up on the topricin and see if that helps too.

hm... maybe i should finally get a foam roller.. i HATED the foam roller I had to use in PT on my IT-band (outside of my thigh) but they recommended I get one and use it.. and i never did. $20 to totally torcher myself? no thanks..lol but maybe i could use it to massage out the thigh, IT band and maybe even SI joint knot a little.. maybe that might help the PT be more effective? If the joint isnt pulled so tightly outta place? freaking hurts.. im a lil desparate.

Dunno if i should my muscle relaxers.. ive taken em very sparingly, cuz they sometimes make other crap hurt. but i dunno..

grrr.. this is stupid.

I really hope i can find my iron supplements, and that it helps give me SOME energy or at least not the total lack of it. Its starting to bother the "fiance'!" a bit I think, cuz i havent been doing nearly as much around the house, and sleeping so much. =(

Oh and my new insurance sucks.. seems i getta fight them from the get-go.. They dont wanna fill my Adderall XR because I don't have ADD!! Godforbid I take it to stay awake and function like a normal person.. pfft... not pleased! Coworkers are telling me they hafta fight for everything pretty much every step of the way =( grr.. i miss my old insurance.. =(

anyway, i gotta try to do something productive. I slept a few hours tonight already on accident, even after taking insta-adderall (probably wouldda slept longer without it), and i gotta try to stay awake the last few hours, so i'll sleep all day cuz of work tomorrow (who am I kidding.. i'd probably sleep all day regardless but still).

hope everyone else is faring well!

and time goes on as more things fall apart

2011-11-30T05:36:00.000-08:00

Well, job wise things are going well I think. Tho i don't really understand why my boss wants me to communicate more, things are going fine, and i don't have anything to say.. she thinks i should ask more questions or something.

So my neck tried to go out again in bed today. wasn't nearly as bad as the first time, as this time i felt something weird, and then i felt the muscle start to slowly squeeze/spasm down the left side of my neck and into my shoulder. I tried to kinda do the opposite motion as what i did to cause it, but i ended up needing to get up cuz it was just getting worse. Eventually took a mild muscle relaxer, which helped a lot with some advil. Still hurt and was all knotted up and felt super tight so i took another one a few hours later and took a nap. Feelin a lil better now. My muscle relaxers are a bit expired but they still do the trick. and they dont knock me the heck out like everything else does which is nice.

Ohh so my ankle has a new trick which I don't approve of at all. Occasionally, it likes to do the same thing! I do something, (like say...walk or it'll just pop like it usually does) and then i'll get this very painful muscle spasm along the outside of my ankle and up my leg..and i can't really walk at all when it does it. it freaking hurts. i usually shift around and try to move it in various directions cuz im not really sure what moved or how to fix it.. but each time ive managed to stop the spasm and then it just hurts for awhile but its walkable. Its my new least favorite trick. Its done it maybe 4-5 times in the last couple months.

New TMJ crap too.. involving weird ear pressure pain/fullness randomly,(it comes and goes, but i found that if i push on my chin as i open my mouth a few times to keep from hyperextending, it really helps it go away) and more frequent loud popping. Not pleased with this. Least the muscle knot pain has been well controlled lately.

Boyfriend is gunna be gone for 2 weeks with the kiddo, going to arizona to help his folks move locally. Going to be a lil weird being alone that long here. Least i live where my friends are now =) But this is kinda a big house to be all alone in.. lol

and dangit we need furnature! Need a twin sized bed for the kid, need a hutch or some kind of cabinet thingy for the kitchen (cant finish unpacking the kitchen without one!), need my bookcase from mom and dads house.. etc. Kinda annoying. =( also need stuff on the walls.

anyway, i should go back to bed.. have a work thing in the afternoon i need to be awake for. and it'll be over just in time to get stuck in rush hour traffic! Ohh lucky me!

wee goodnight folks. Hope everyone else is having a better time staying together.

and boy have they changed...

2011-10-09T07:29:00.000-07:00

Well...

I got the oncology job! and a couple weeks ago I moved back to my home town! We are renting a nice house with 3 bedrooms.. and I was all excited to have a sewing room, but it looks like we might end up having his 13 yr old daughter live with us....holy crap. She is over for the weekend and she keeps calling me mom.. the youngest (she is 6) is starting to figure out that Im kinda like a step mom..and im officially listed as the step mom on her schools paperwork..

Ive had 2 weeks of orientation crap at the new hospital, and on monday I start my first night shift! My set schedule kinda sucks but oh well, I'll live. Its awesome being back home.. had my folks over for dinner last week, that was nice =) and I get to see my best friend pretty often, as her kiddo and ours love to play together, and are even in the same kindergarten!

Ive been a day person for awhile now.. and have been needing to sleep A LOT to maintain that.. but now I have to switch back to nights..

joints have been finicky, im a little nervous about doing 12 hr shifts again physically. but i think overall it'll be better for me cuz i'll only be working 3 days a week.. And as much as im annoyed that I wont be working 3 days in a row after orientation, maybe it'll be better physically? i dont know.. we'll see.

gah, gotta fax my timecard from before i was in the system and goto bed.. i spent all night passed out on the couch, trying desperately to wake up enough to fax it in.

goodnight

things are changing...

2011-08-07T10:23:00.000-07:00

Well.. I had a blog a week or two ago all written out and then i passed out.. and later i woke up and closed firefox.

Teeth are pretty much all better. I do still have one round kinda area in my cheek that still hurts if i push on it, not sure why but its slowly been shrinking so not concerned. No tooth ache or need for root canal (YAY! *knocks on wood*) but it is super sens. to cold now.

So.. I have a job interview back home.. at a large hospital, 12 hr shifts, noc shift.. Oncology unit!! Basically, my dream job. I want to specialize in Oncology badly. I work there for a yr and i could get Oncology certified, and id also end up getting chemo certified in the near future. Its on Tuesday. I'm excited, and scared cuz I want it so bad.. So far its my only application I have heard back from that ive applied for.. and its the one i really want...

Really really hope i do well on my interview... My suit is technically a size too big, but Im gunna take in the jacket and i think it'll be okay.. Ive lost like 20lbs since I bought it. (40lb wt loss total in the last hm.. year and 1/2-2 yrs).

My interview at my current small hospital was extremely informal. I went after working all day, drove an hr and 1/2 and showed up at 830pm in my hospital PACU scrubs, meeting with the evening shift nursing supervisor who offered me the job on the spot. So i feel... out of element. But oh man oh man I want this position... ! The hospital is within the nations top 6% of oncology programs...

Anyway. Joints are all jacked up. I have been working a lot, and slacking on my PT so that hasn't helped.. and its my own damn fault. =( must. fix. this.

K, i got a ton of crap to do and i still need to drive down 3 1/2 hrs today.. and i worked all night lol aw well.. getta see the boyfriend soon, and our two year anniversary is on Monday (minus the very sucky 3 or so months we broke up last yr..=( but least things are going well now. =)

oof. time to get to being productive!

At the dentist...

2011-07-21T13:17:00.000-07:00

I remember reading about other EDS-ers that don't react "normally" to numbing meds and anesthesia.. My mom has almost always had issues at the dentist with them not numbing her up right or her burning thru the crap super fast/wearing off too fast..

The last two times i was at the dentist, I thought it was.. just those isolated times.. but apparently not. Cuz now, my 3rd time.. same thing over again.

I had 2 cavities (Ive always been told I have very soft teeth..which this dentist agreed with) and i hadn't been to the dentist since 2007... which for me, i think is actually pretty good Lol.. cept one of them is really bad, and really close to the nerve. He is afraid i'll need to get a root canal, or get it pulled.. or have this weird surgery where they do something with the gum like or bone or something.. i dont remember. either raise or lower it... i think lower it. anyway.

So he goes to numb me, and the chick initially asks if i have any problems in the past with it.. and i remembered the last 2 times, and told her briefly about them. Then they wait a bit, and he shows up, and im already starting to get un-numb toward the front.. tell him the stories.. and then he injects me again. Partway through the first tooth I could feel stuff again, didn't hurt.. but i could definitely feel the tooth. afterwards i told him. lol

And somewhere in there, my eye lid started going numb.. and i couldnt' close my eye completely without totaly squinting... which he said "isn't suppose to happen"

Then comes the bad tooth... he kept not numbing the whole area.. eventually he numbed the upper pallet (which he apologized for, dunno why) and numbed me a whole bunch of times.. and then switched to a long acting numbing crap.. and got me a bunch of times with that. Lol - And halfway thru the bad tooth, he had to re-numb me too..

After telling him some of moms storys, and seeing how I was being (at one point he hit a spot with the needle, i winced and he was all "wow, you really do still feel that"), he said "I think you and your mom are wired differently than..everybody else." Lol! Ohh that amused me greatly! cuz its soo true. haha cept maybe other EDS-ers out there!

he worked on filling my 2 cavities for over an hour..about an hour and 20min.

So now here I am... with a very swollen poofy left side of my upper face... my eye lids are waking up a bit, but still slightly numb, and keep watering cuz they know something is wrong... Things are slowly waking up but im pretty freaking numb, and my cheek is about 3-4 times as big as the other side.. my eye keeps watering, and the upper left side of my mouth and face don't work. lol Oh and most of my nose is numb, and some of my front teeth..

(he worked on my back two molers on the left).

he wrote me a script for percocet "just in case" cuz hes afraid the tooth is gunna not be happy... and in case i need to make an emergent appt, he wanted me to have something to tide me over..and he said he works tomorrow, so i can just call the 800 number and ask for him.. and if im still numb or whatever this evening, then I can call too to talk to him lol (super nice dentist!! Beats the crap out of the jackass who kept trying to drill when I kept feeling it.. and he wouldn't listen to me.. and eventually got all the wrong areas numb, including my freaking ear!).

Its bedtime now.. and im hoping when I wake up, I wont be numb, and my tooth won't hurt.. so i can work tonight. tho i really dont actually want to. Lol and would much rather catch up on the sleep I've been lacking lately.

Oh.. and this weather? is wrecking havoc on my joints!! its alternating sun and rain every other day, and man things hurt.. stupid joints. and weather.. pick a weather condition and stick with it for a while please!

random bits.

2011-06-20T14:22:00.000-07:00

My jaw really hurts.. i dont know what i was doing in my sleep but It hurts when I open very wide, and really bad when i move my jaw to the right. pain is primarily on the left, right in the joint.

My ribs keep not being where they are suppose to be. usually its the lower floating ribs, which i can put back usually pretty easily but gripping inside and pulling them outward (took me awhile to figure out thats how to fix them lol). but the ones by my sternum also hurt sometimes.. thankfully it mostly feels like the area is super tender, like a special kind of deep bruise or something. Sometimes its just one spot in particular and if i push on the rib a certain way, it'll "POP"/shift back where its spose to be.. very weird feeling. lol

warning..probably too much info:
Recently, I noticed that 3 or 4 of the ribs on the left side of my chest were super tender.. and i was complaining about it to my bf when I noticed it.. he then embarrassingly said "Uh... I know when that happened, last night when we were having sex, i felt a bunch of your ribs like, dislocate when I pushed up on your sternum, it was really weird feeling!" - lol I didn't notice.. so I'm guessing it just shifted them and then the ligaments got all tender/sore or something after?

I slept 21 hours.. oops. Every time i woke up I was just too tired to actually wake up and get up and i kept falling back asleep. I was a bit sleep deprived for 2 or 3 days.. so apparently I had a lot of catching up to do Lol. But now my back hurts from laying in bed so dang long. But it sucks cuz i have a lot to do on my 2 days off, well..one day now. lol AND my sleep is all goofed up, cuz by 7am, I was actually feeling awake. lol stupid sleep.

we might be moving back home, about 4 hrs away. while i really like our place now, and i like my hospital a lot, and I hate the actual process of moving, the idea of being closer to my friends and family again, well, i can't wait. =) I miss my best friend in particular. gotta find a job.. I've been a nurse for ALMOST yr now (July 6th makes 1 yr, Aug 3rd makes a year of expier.) *crosses fingers* REALLY want 12 hr shifts.. they are gunna kill me physically initally cuz its been so long, but overall it'll be better for me I think, cuz I'll have a lot more days off, and thats really how i recover.

Oof.. time to go try and be productive. back needs to stop hurting.. I'm fine if i don't move, but soon as I bend, stoop or sit upright, it has a slight delay, and then starts really hurting. stupid back.

misjudging..everything.

2011-06-06T06:38:00.000-07:00

I hate not knowing where my body is in relation to well...my body, and the rest of the world..

I just smacked myself in the lip, HARD with my own nail. I wasn't meaning to be that close to my face, I was reaching for something on the computer...and I have no idea how my hand decided to do that. This also fits with my ability to run into walls, misjudge doorways, trip over invisible objects etc.. if I just keep telling myself its a skill, maybe I'll feel a lil better about the insane frequency I do these things. lol Twice in my pre-teen years, I ran into the same wall (misjudged the doorway to the hallway), one of the times I did it so hard that I gave myself a mild concussion and had the pleasure of going to the doctor the next day with mom (who suspected the concussion deal) and admitting what happened.. (I was all of 11 yrs old at the time).

I like to think that walls and furniture just jump out at me and cause me to run into them.. they just move so fast no one else can see them ;)

mindless

2011-03-21T15:20:00.000-07:00

I need to sleep.. I don't know why im not asleep. i think partly, my body has been excited about actually like, sleeping when im spose to this last week for the most part. (and not having to screw things up with PT and not working 40 hrs a wk for the first time.. did 32 hrs instead). but i haven't been very good about keeping up with my PT cuz of my stomach feeling like crap. and me being lazy.

my left shoulder is.. i dont know. It just has this feeling thats telling me its not sitting where its suppose to, and i feel this irresistible urg to wiggle it around and move it and push it back and fourth tryin to relieve that feeling.. - its like my left shoulder has suddenly developed "restless shoulder syndrome.' - like 20x more obnoxious than it use to when itd get relieve by me pushing it around.

I did all my upper body PT this morning.. and now it feels like maybe i strained a muscle or ligament or something in that stupid left shoulder on top of the irritating feeling that still wont go away.. grr. feels like i have a spasm developing now.. great. lol like thats really gunna help things. stupid body.

k gunna go try to go back to sleep.. my pretty dark blue-with-silver-swirls couch is going away today =( im a bit bummed about it, even if it was ultimately my choice... the boyfriend wanted a different couch, ive sorta beat the hell out of this one in the last 2 1/2 years, and it shows cat hair like you wouldn't believe.... and my best friend is getting rid of her nice couch....and i had a friend who HAPPEND to be on vacation near where my best friend is, and offered to drive their trailer down and bring the couch up..... =) And haul my couch away and donate it to a friend of hers with a baby and a hubby and a totally barren apartment.. So.. alas.. im upgrading. but i'm still sad.. I should post a pic of it, in memory of next time..haha

k really. i need sleep. and i dont know how much sleep i'll get these next couple of days... AND there is a nationally shortage of the drug I use to keep me awake when the narcolepsy gets worse.. so I cant get any more of the extended release adderall for who knows how long..and ive already dwindled my emergency month supply down (because i havent been able to get it all month already =( sooo... dont wanna squander them on something thats my own damn fault, instead of using them when i REALLY need them and i cant keep awake otherwise.
hmph.

okay shoulder, u can stop now. really....

tummy hurts..

2011-03-18T12:40:00.000-07:00

my stomach is ticked off at me =( Its sorta doing what it does every so often when I can't eat wheat/gluten for awhile.. though I didn't have very much this time. And it was a long time ago now.. but it wont stop. It felt a little better for a short while, enough to goto sleep.. but now im awake (woke up every hr for the last 3 hrs) and it hurts and is all bloated and full of gas.. bloody hate this! I think i have some gas-ex pills around somewhere..

i have work tonight and really wanna sleep more.

hmph =(

Nearing the end of PT

2011-03-15T11:21:00.000-07:00

Well, apparently I've come a long way in the last couple of months. My bursitis is all but gone, they finally showed me how to put my SI back in place, I'm sleeping better. Shoulders are still pretty lax and I gotta shove em back In a few times a day but I can sleep on my side fully supported w my pillows and don't have that irritating feeling in the joint that tells me its shifted too far forward or back right when i try to sleep anymore. It's getting spendy too so I was Gunna talk to them about releasing me or cutting it Down.
But I was due for my monthly prog note so worked well :) the guy I like more did it this time and he said muscle wise I'm pretty dang strong now. Since my pain has significantly gone down the last 2 wks, he doesn't wanna cut me loose yet but we decided to do once a week for the next month and then call it good. They also have an "alumni program" which means I can come work out here whenever I want to or if i start having issues w something I can drop in and they will tell me what to do. Or if I can't get my SI back, they'd see which way it's rotated and fix it for me :) pleased about all that. :)
I just gotta keep up w my stuff at home. It's harder to remember when I'm not actively hurting as much lol. Still pretty aleve dependent but haven't needed to supplement w the advil as much. Need to remember to regularly ice stuff too, they pointed out the whole..end of the inflammatory process which is the laydown of scar tissue...which I have a lot of in my hip joints..they said it's probably another attempt to try and hold me together.
Oh and I need to get this super heavy duty brace for my knees.. So my patella is held in place better. For a few weeks they were taping them and Woa it felt so so much better..my knees don't usually hurt but I felt so much more stable!! He said my knees were "loosey goosey" lol I didn't realize how I automatically adjusted how I walk and move to prevent my knees from moving certain ways and causing twinges of pain that I well, never realized was there till it was gone lol :-) so I want the braces to wear when I work and walk a lot.

K gotta get some sleep before work tonight..I made homemade chili and corn bread last night, wasn't the best but was pretty tasty :-) hope Ppl are staying together. :)

wee... busy busy times.

2011-03-03T21:11:00.001-08:00

Well, holy crap work has been insane the last few weeks... this is my 3rd week of working 40+ hours.. I'll actually be working 48 this week somehow..

With all this work, its really hard to feel motivated/have energy to do my PT =( My bursitis had basically become a thing of the past till the last couple of days. Its not bad but its definitely starting again. Last PT session my IT band on the left was super tight again... had to use the stupid foam roller. i hate that thing. it hurts. And i have this massive muscle knot in my lower back on the right, can't seem to work it out to save my life.

I had my little "check up" session with the main PT guy, who i don't even really work with anymore. He irritates me. I decided I don't like him afterall. He started me doing this one exercise to help my "core" and i did a similar one back when I did PT before but I started out a bit slower.. He told me to go faster, but to stop if i can't keep it balanced (lifting each leg off the floor, keeping my lower back pressed to the floor against a towel and not letting my hips/abs shift from side to side at all), and said its not even worth it to keep going with the same leg if i cant keep it even.....and I told him I can't tell based on what hes telling me/seeing if im keeping it even or not, I can't tell. (My old PT used biofeedback w/ a blood pressure cuff all pumped up behind me, and i had to keep the dial even as possible till I could finally a) develop the muscle tone i needed and b) know what im spose to be feeling... - what does this guy do? :

"Your not in tune with your body at all. You need to be able to do them faster because otherwise u wont do them and u need to be able to do them right. Thats a problem. Just like when I ask you how bad your pain is, you don't give me a straight number, u say "2-4" - so is it 1, 3 or 4?"

what the heck dood. No, I'm not in tune with my muscles or joints. My joints do what the hell they want to, how am i suppose to keep track of them? And... if i knew what my body was doing, I wouldn't freaking be here. And painwise, it varies GREATLY depending on the day, what I'm doing, what the weather is doing etc.. so u get a "Average Range"

grrr... that really really irked me.

I ended up not doing those ones that weekend cuz i really didn't know what i was suppose to be doing AT ALL.. then the next i think friday or so, the other PT guy I really like explained it very simply for me, and when I told him I cant tell if the hold is breaking, he told me to use my hands behind my back instead of the stupid rolled up towel so I can actually FEEL the muscles on each side. POOF! I can figure it out now!

I read this thing on this physio message board about how people with EDS shouldn't stretch out their tight hamstrings, cuz its usually "the only thing keeping their knees from subluxating" - thought that was interesting...

I have 2 whole stretches im suppose to do.

He decreased my exercises finally, so its back to taking 2 hours now, instead of 2 1/2 to 3 hrs. thankgod.

I have all these cuts on my finger tips, its irritating the hell out of me. HEAL ALREADY! And i jammed my finger between a drawer and cabnet door that didnt open and it sheared off an inch of skin on my middle finger.. and that sucker needs to hurry up and heal dangit. It hurts and i do NOT like having open cuts on my hands when I'm working.. too many extra nasty bacterias floating around a hospital. - Ive been keeping it covered w/ a bandaid, and then covering that with the op-site/tegaderm we use to cover IV's, cuz it keeps it waterproof about half the night. tryin to leave it open at home to air out but i keep bumping it or accidentally rubbing it and it opens again.

gah =( stupid cuts. I hate the slow healing thing. its annoying.

Ack, gotta get ready for work... did not sleep enough today, boyfriend kept me up. (kept us both up but we did elect to eat the pulled bbq pork sandwiches i made, that was tasty =) (homemade bbq sauce, pork loin in the crock pot). mm..

must stay awake.

K, off I go. dang i need to remember to make a dentist appt.. oof.

starting to like PT a lil more..

2011-01-30T02:56:00.000-08:00

Well, PT is going better.. sessions still take about 2 hours, but they seem to be listening to me when certain things don't go very well for me. I'm not allowed to do any IT band stretching anymore, but that means they want me to use the evil bad foam roller thing more...ugh. i hate that thing. lol it hurts.

I have 3 colors of tubing and one band now im working with. I need to get an exercise ball and 2lb weights too so i can do the other ones Im suppose to be doing. I'm sore from it but not as "OH MY GOSH I'M GOING TO DIE" sore as I was, (ok so that may be a tad melodramatic but u get the idea =) its more...muscle soreness which I'm okay with. He said he is going to teach me how to put my SI back in place which is cool, cuz thats one acute 'injury' that happens somewhat frequently and seriously interferes with...well, functioning. i hate that horrid muscle spasm and sciatic pain. He said i'll have to be careful with it cuz i dont want to flip it the other way, and that he wont have me do what he usually would..cuz "I don't make a habit of making already hypermobile joints more mobile' lol I also told him about what the PT lady back in the day did before i knew about EDS (i was like.. 18 or something) and i was having sciatic nerve pain when I walked, she taught me this lil trick to put my SI back in place (tho this doesn't help when the muscle is spasmsing cuz the muscle is interfering) and he said its called..er. something, but basically most PT ppl don't use those techniques (and that he was impressed she did). He said he'll focus more on the "muscle energy" techniques to get my muscles to put it back, so hopefully it'll stay. He also seemed rather floored that 3 yrs ago when I initially had the spasm issues, I had to wait 4 weeks for my PT appt, and the doc in the meantime gave me 90 muscle relaxers and a bottle of pain pills.... he said their policy is within 24 to 48 hours for the initial appt, "cuz usually ppl are here because of an injury or surgery and its best to get the ball rolling!"

I'll be working with the other PT guy this week so that should be interesting. I like him better, tho my main PT guy isn't bad, hes listening to me more than I thought he was.

I should probably ask about what shoulder/arm stretches are okay to do cuz those muscles, esp my tricep will get quite sore and I'm not sure if my usual way of stretching things is okay or not...

I just finished my PT stuff.. I'm getting better at standing on one leg but I still can't get thru any one set of exercises without taking a break (the one legged ones).. He said tho that the fact that I can get thru some of them and have noticed that I can do more reps before it becomes a problem is a good sign, and things will just keep getting stronger so I can tolerate more... *crosses fingers* (if i stand on one leg for very long, i get a spasm-cramp-type-burning pain at the front of my hips).

Its gotten to where i really look forward to the end.. with the ice for my shoulders, and the ice and tens unit for both my hips. Though this last time i asked for the heating pack the chick mentioned before, and HOLY CRAP thats nice heh otherwise i sit there freezing for 15min, but having a nice hot pack across my tummy while everything else is frozen is quite nice =) And she gave me a blanket heh I was pretty much nodding off/falling asleep when the timer went off.

Okay, should probably go on.. suppose to go home for the weekend but i procrastinated a bit and decided to chillax (read: Curl up with my Snuggie and do absolutely nothing productive...ie, finish "the girl who kicked the hornets nest" and catch up on "Lie to me" and Fringe" and fall asleep on the couch a lot hehe) cuz this last work week or two have been a bit much.

Now i getta drive 3 1/2 hours and hang out with my best friend and her kiddos the next 2 days before i gotta come back for more work and PT. wee... (bringing my little bands/tubing cuz i gotta keep up with my PT like a good girl lol). When my Boyfriend saw all my new rubber toys (lol), he asked if i'd taken up IV-drug use cuz they look like that kinda tourniquets. Lol

Hope everyones joints are staying mostly in place =)

I think my physical therapist is trying to kill me...

2011-01-21T03:34:00.000-08:00

Holy crap.. so i had my first actual day of PT, not just the meet-n-greet one i had on monday.
I worked 8 hours, then drove an hour to where i live, and to my appt (which i am very happy is less than an a mile from my house now)..

My appt took 2 freaking hours. and moving hurts. a lot. hell even not moving hurts right now. I have 3 very tight muscles in my lower body, so i have a couple stretches im spose to do, one of which they kept modifying cuz it was causing my lower back pain when i stood upright again as things tried to shift back in place. And an insane amount of strengthening crap for everything from my legs, hips, low back, abs, and both shoulders. I saw many people come and go during my 2 hr appt.. I sorta like the 2nd PT guy better than I like my primary one... he seems to like, listen to me a lot more, esp about the EDS stuff. The first guy kinda well.. was nice enough but wasnt cluing in when i'd mention something as being a concern or causing me problems. (the office has 2 primary PT doods and then a couple assistants).

The best part was at the very end, when they put tens unit pads on my hips, 4 on each side, then wrapped my whole midsection in ice it seemed (two big ice packs in pillow cases, which were then tied across my stomach lol) and then 2 more ice packs for my shoulders. (i need to get me some of these... ive never felt very inclined to seriously ice my hips until now but holy smeg, they hurt).

except during the icing, i started having SI pain and sciatic pain throbbing down my right leg.. and when i stood up, i could feel the muscle in my lower back start to slowly spasm and get pissed off (like it does when i sit in a car too long) - so i got dressed (cuz i no one told me i'd need to wear shorts.....im a redhead with the whitest legs possible, I dont wear shorts) so i had to wear their shorts.. - anyway, so I mentioned it to the tech, who then alerted the cool PT guy "hey, shes starting to have some severe SI pain" - which the guy was all "Oh I was worried about that! here sit up here and lay down" - and he checked leg length and felt my hips and then had me do this push/pull thing against his hands all isometric style with my knees up on this big foam thing - then it started to stop hurting.. and when he was done, he rechecked things and was all "there, that should be better." - apparently the right SI side got anteriorly rotated.. (i need to ask how to fix it myself cuz once it starts, I'll usually be VERY gimpy for a week or two)
He then changed one of the exercises AGAIN for stretching my IT band (which apparently is very tight and likely causing some of my bursitis issues) which hopefully wont interfere with my SI anymore, if that was the culprit.

I'm suppose to do my exercises once a day (thank god) however i am currently too sore to do them I think.. my hips HURT and are throbbing. I had a hard time falling asleep despite being insanely tired. then i slept an insane amount (about 14hrs off and on) and cant find a position to lay in that doesnt cause a fair amount of pain.. and everything feels just.. unstable. The only part that doesnt hurt that bad and id feel okay doing my stuff for are my shoulders.

I have 2 rubber rope things and a band they sent me home with. and im suppose to get an exercise ball for a couple things.

Im suppose to work the next few nights, not looking forward to that at all since the whole, laying still and moving thing hurts.

I've never felt like my ass has been kicked this hard by PT before.. =( I need to get a 3 ring binder too to organize all my exercise handouts. theres a lot..

i need those big ice packs they have. the only ice pack i have is one that worked great for my foot, but my shoulders and hips are a lot bigger than my foot...wonder if i can get them online for cheaper?? hmm...

i just want to go back to sleep.. im so freaking tired.

as Achmed the Dead Terrorist says... "I NEED SOME LIGAMENTS!"

(you can skip to 2:40min to get to the ligament part =) I love achmed..heh

K.. im gunna like.. um.. continue to sit here or something. maybe read. or fall back asleep. blah. =(

yay insurance!

2011-01-07T17:37:00.001-08:00

I was tossing and turning and unable to get comfy...between the stupid bursitis, my shoulders sliding too far out when im on my side and the SI joint pain acting up from spending too much time tryin to sleep on my back.. i was tired of it.
So i got up early (ugh i want more sleep) and called my insurance peoples..

My former script for PT will work just fine, YAY! So monday i can call around to the PT places and make an appt. Oh and I don't actually have to have a referall to see a specialist.. which is sorta cool. Also means that my sleep doc apt in Feb wont be a hassle.

then i called to make an apt with the ortho doc, and see if i can convince him to give me cortisone shots in both hips (at the very least one of them so I can sleep on at least one freaking side) so that my PT will be more effective cuz i wont be fighting the inflammation so bad.... - what blows is i took the earliest appt, which was a cancelation.. monday afternoon. Meaning i'll get at the most 4 1/2 hrs of sleep if i goto bed RIGHT AFTER WORK and run to the apt (30min from where i live) only to try to come back here and sleep again before work.. ugh. But, if he agrees to do it, then thatd be awesome. I just want the maximize the PT as much as possible.

so yeah. yay =)

Gotta go make food now.. boyfriend is gunna be up to goto work soon and id like to have dinner ready.. then maybe i can nap before work again?

aches and pains

2010-12-30T09:47:00.000-08:00

I think I'm pretty fortunate in that I can't really say I have "chronic pain" - but I definitely am a lot more "stiff and sore" than most people my age.. according to my friends.. and this one patient who told me I can't possibly understand the daily aches and pains one gets when they are older and I should enjoy being in my 20's while I am.... little does she know...lol I have noticed that I can't go nearly as long without advil/aleve than I use to.. it didn't use to be a daily thing but its gradually gotten to be. Aleve definitly cuz it lasts longer, and advil a couple times a day..at the very least, before i goto bed and when i wake up. - sure hope I dont end up with any GI bleed issues or anything cuz that would surely suck.

Bursitis in both hips has really been acting up.. making it really hard to sleep on either side at all, which doesn't do good things for my SI joint. lol stupid catch 22. BUT! my insurance card finally showed up! yay! So i looked em up online, and it looks like I have quite a few choices for who I want to see for Physical therapy. sweet. Now the question is... how the heck do i choose?! Ive never had a choice before.. I dont know if calling each place and asking if they have anyone familiar with genetic stuff, or hypermobility stuff, or marfans/EDS would do any good... ?? I lucked out w/ that last PT lady who happened to have a Marfans patient at the same time, so she was very interested in researching it all and customizing everything just so.

I also need to call my insurance peoples and find out if my old script from Aug is still valid or if i need to goto the doc again and get a new script for PT. Tempted to go back to the ortho guy and ask about cortisone shot again... in both hips.. (so im extra miserable for a couple days) - might make the PT more effective if i actually do the crap..lol and the whole, temporary relief thing until the PT starts helping).

Found out crap about the curves thing.. and that I can go to a local curves, join that one and they wont charge me the sign up fees. I was apparently suppose to get my packet in the mail but that obviously never showed.. or got lost. Soo i really want to do that. i know i need it.. (tho moreso when my hips get fixed again my PT so extra crap can have a chance to stop hurting and the right muscles will be firing). As much as I am tempted to try a "normal" gym, curves is so much more gentle and better for my joints i think. And the new curves is RIGHT on the way home from work too...more incentive.

that shoulder blade muscle knot keeps coming back too.. it usually goes away after a muscle relaxer or two but then it shows back up a couple weeks later. Hoping PT of my shoulders will help that too..

I want daily massages.. badly. i have all sorts of new knots in my back and shoulders I didnt use to have.

oohh I had this one a couple wks ago in my lower back..it was like pinching a nerve or something, holy crap it hurt to walk or move.. sucked at work cuz i couldnt do some basic stuff.. grr. finally went away after lots of rubbing it and taking muscle relaxers (and then thats when my SI joint started acting up again more so Lol.. - why must everything be so interconnected?! lol)

Okay.. i gotta go pass out. I was called off work, then put on call, and then called in for 4 1/2 hrs of work cuz someone went home sick (got time and 1/2 for that heh) but now i gotta crash cuz i got work again tonight.

nightynight.

stupid muscle knot!

2010-12-06T21:05:00.000-08:00

So I got sick randomly.. that was obnoxious. Least it started on my first-of-4-days-off... and so i was able to drug the hell out of myself and SLEEP SLEEP SLEEP... I took what drugs i had on hand that would knock me out, only needed it about once a day cuz im now also off my desipramine (i had 2 days left but with only 2 days left and it costing over 100 bucks to refill the script without my insurance (that hopefully will announce itself in my mailbox soon..) - yeah.. no point. So yeah.. I took drugs, and pretty much slept for almost all of 48 hours.. i woke up to talk to T a little bit before and after his work, and that was pretty much it.
but i feel better now. I just have a dry bronchitis-like cough here and there, not bad enough to do anything about thankgod. And my nose is done being stupid and i havent seen gross thick green crap for awhile. and i feel better. yay.

cept for this crazy muscle knot in my shoulder blade that makes turning my head to the right really hurt.... i can feel the knot and holy crap it hurts.

since im feeling better I really want to like.. dress up all fun-like and have fun. T took an extra shift tonight (overtime) and im working tomorrow (his day off) so.. next will it will have to be...

my scale has me down 40lbs from this time last year... very weird. i dont feel that much smaller.. and im now basically my long standing "goal weight" i always said id want to be but didnt think i ever would be..

my curves apparnetly closed down.. and i hadnt transfered my membership yet.. so now i gotta see if i can transfer my membership.. cuz otherwise id have to sign up again at a different one and itd cost more money and crap =( which i dont have.. and i really want to goto curves damnit.

i want my insurance info so i can figure out the physical therapy thing.. i getta keep my doc (yay!) but i dont know if my old script she wrote me in Aug would still be good..? or if i have to go back again, and get a new one. i dont know. the info LOOKS like i should be able to self-refer but i dont know. and i gotta figure out where to go.... ive never had an option before.

blah, gotta be productive. put clothes away and put more of the kitchen away.. all my crap is glaring at me in its boxes and i dont know what to do with it all..

joints, sleep, and advil...

2010-12-02T20:50:00.000-08:00

so theoretically, i get to start PT this month.. yay! Shoulder has been really bugging me. and it won't stay put at all. A nurse i was giving report to commented on my shoving it back into place.. i do it kinda subconsciously now and it thunked kinda loudly with an obvious couple inch shift back into place and she was all "Woa.. was that your shoulder? Is that rotator cuff problems?" needing to be a bit more creative with my pillow placement too when I sleep. I think i need another squishy pillow, usually i use one for my head but in the winter, i need to sleep on 2 or my nose gets all stuffy (grr)...and then i have my body pillow for my hips and kinda shoulder, but when i steal the bfs pillow when hes not here, it works a lot better.. - yup, im turning into my mother. lol

I rarely have restless leg issues.. during my sleep study i barely qualified as having restless leg.. and the mirapex was bad for me cuz i couldnt stay awake to save my life the next day, ("rare side effect") - but EVERY SO OFTEN i cant get comfy and i have to keep moving them, esp as im trying to sleep. last night was one of those nights.. bloody hell it was obnoxious. and tony wasnt here so i just kept flipping back and fourth. usually im fine sleeping alone so i dont think that was it but gah.. (he fully admits to not being able to sleep when im not here tho.. he says im not allowed to be gone during the day anymore lol) I miss my super soft bed... we're sleeping on a king mattress at the moment (freakin huge) and its good for his back but i need a few more pillows.. i think when we get all situated, and my old bed is all made up in the guest room, then thats where im gunna sleep when hes not here Lol..

so i dont have my script drug info yet... but im damn near close to being out of my desipramine.. and i just found out its $110 to pay outta pocket for.. which i dont really want to pay for. maybe i'll go without and show the bf how insanely difficult i am to wake up without it.. (ha! and he thought i was hard to wake up now...lol).

im trying to resist the urg to take my adderall.. its been 3 days or so now. Goin back to the whole, caffeine thing again. not sure what im trying to prove... cept that im not dependent on the adderall, i only take it a few days a week as it is but yeah.. its also nice not having the crazy dry mouth (between adderall and disipramine, i get pretty bad cotton mouth) - i'll probably take it again this weekend so i dont sleep away my days off. id rather take it when im not working than when I am so I'm more productive on my off days. damn narcolepsy.

i also forgot to take my advil and aleve for a couple days.. and then was wondering why i was so dang sore...lol duh. i needed to get out of bed and take it so i could sleep more the other day and he asked where i was going so i had to tell him.... i hate admitting that. i'd much rather just take my meds in silence and not let on..

okay i gotta wake up and get ready for work.. last day of the week, which is nice... and

so much to say...

2010-11-21T04:01:00.001-08:00

I keep thinking about posting here, and then i get distracted. A few times i started to write, and then saw something shiny (or something =). I usually dont write when im on my PC, i usually do it before bed, lap top in lab, right b4 passing out... but someone else has been using my laptop (don't realize how much ya miss something till its not available lol) and i've been busy.

I got a benefited staff position... so that means, INSURANCE!! which means... PHYSICAL THERAPY BABY!! I'm oober excited =) The cortisone shot in my hip has mostly worn off, so the bursitis is pretty angry, and overall im just.. pretty sore. I've been regularly consuming aleve and advil, and yesterday I didnt, thinking "well heck im not working, so.. i can like..not take it this time" - and then later, i kept wondering why I was soo sore, my hips, shoulders, knees, back, neck etc..lol woops. I've also been living in scrubs with a long sleeve shirt under, and havent spent much time in front of a mirror apparently because I stripped for my shower in front of a mirror, and holy crap i have a bunch of bruises! All over my arms and legs. Damn EDS and Aleve... but least im not as sore? =)

I cant wait till i can do PT again.. i hope i get a good physical therapist...my last one was pretty awesome.

I also will have dental insurance, for the first time in a really long time.. im nervous about that. =(

anyway, i have WAY too much crap to do and i keep not doing it.. so off i go..

Nursing stuff....

2010-09-19T17:30:00.001-07:00

So i ended up copying a doc's note about a patient that was hallucinating like crazy...Lol she was pleasant enough, but over the course of the day she started getting more and more confused, and by the time I had her at night, she was off her rocker lol She was havin visual and auditory hallucinations, mostly involving people in the room or little kids in the room, and one second shed know she was in the hospital, other times she thought she was home, or in a factory, or in some magical combination of all of the above Lol.
She redirected okay so if she was tryin to jump out of bed, then i could get her distracted by something else...though she mostly did that herself, ya know, like the man that was apparently playing very nice music in the room and she thought we would like to hear it too...lol
So, found out it was a bladder problem (and i'm still a bit shocked i'm the only damn one who made the connection...) and she got all better. yay.
So meanwhile, before they put the foley catheter in, the doc met with her and made his note progress note deal... and I copied it and printed it cuz it amused me greatly...

"She's oriented x 3 actually, right at this moment and cooperative, though asked me if I was the doctor and when I introduced myself, she said yes indeed, I was the one who was out golfing a year ago on a Saturday and didn't come in and discharge her on time. I do not golf." - LOL!!

I like the "I do not golf" added! hehe then at the end of his note:

"She'll be in the hospital at least another 48 hours at this point. I do not wish to aggravate her any more by not seeing her in a timely fashion, If I "happen to be out golfing."

I was busting up laughing at the nurses station when I read that... Lol =)

They took out her foley catheter, then she was only voiding incontiently, so no measured amount... and i counted how many times were charted for nearly 24 hrs since they took it out (and the intense confusion started about then) and I decided it would make a lot of since if her bladder is full.... 870ml stuck in there apparently! Tried getting her up to a commode, she still couldn't even come close to emptying it. And things were INSANE that night but i got the order to put a foley in, but i ended up not having time to do it (grr.....) and i'm a bit upset that i had to pass it onto day shift, and then they waited another 3-4 hrs of confusion and hallucinations and stuff, before the doc came in, and wrote a 2nd "place foley" order (?!).......(i bladder scanned her twice, two different post void residuals, and I got her up to the commode to try going in a natural position....but i was ignored apparently).
And NO ONE ELSE made the "full bladder=intense confusion" connection which i also do not understand.... thats not exactly uncommon! I mean its not the most common thing, but esp cuz the whole reason for her visit is a Urinary Tract Infection and "altered mental status" though she had been alert and oriented, with a little forgetfulness at times the whole time (i had her for 5 nights total..this all happened on the 4th night).
even after in report, no one stated the connection... HELLO!

I wonder how long it would have taken them to bladder scan her had I not decided that would be a very good idea at 0530, despite the insane crazyness that was that shift (stayed 45min late to finish charting and finishing my admits med list....course they discharged him home that day..grr - oh and no lunch lol but big deal, use to that only cuz i really suck at making myself take one..my own fault).

anyway. i just had to vent/share. lol =)

Meanwhile in EDS land...
lots of joint twinges, and Sciatic pain intermittently annoying. should keeps feeling really weird and i keep adjusting it and sliding it back where its spose to be. (freaked my friend kristen out...lol shes never seen my joints do their thing).

i'm way sleep deprived. and wanna sleep sleep sleep...
aw well..
too much work for me.
ta-ta for now.

staying mostly put together..

2010-09-13T12:14:00.000-07:00

well, holding up a bit better than i thought i would. i think there is still a bursa sack thats pissed off in my right hip but the cortisone shot took care of the bigger one or main one that was annoyed.. apparently there are 3 little ones in there. And the butt one on the right hurts fairly bad the last couple days.. burning achy.. and that one hurts even when laying down which sucks. Doc had said something about glutes kinda protecting it.. so i wanna really try to remember to do glute exercises i'm suppose to do anyway (due to the whole, weak glue thing the pt told me) to see if that'll provide a lil more cushion or something?
and the left hip has been intermittently annoying still, but nothing compared to how bad the right one got...

damn bursitis. just took 4 advil and 2 aleve. if i didnt have to leave, id ice it again....dont really feel like sitting on an icepack in the car lol

I really miss my super dooper soft bed.

finally got the stretchy bands so i started doing the shoulder exercises the doc told me to do.. not entirely sure if im doing them right, one benifit to working with a PT, they can tell you if the right muscles are doing their job, and exactly what ur joints are doing vs what they are suppose to do lol.. but i suppose muscle tone is muscle tone at this point. i kept having to shift the right shoulder back in place last week.. it never stays where its suppose to, and sometimes when its shifted forward, it starts to really bug me, like a nerve isnt lined up right, or the muscles are pulling wrong. aw well.

im finally working night shift, but only for one more week till i gotta switch back to evening shift for a week or two.. and then im prayin they put me back on nights for good. the guy im working with on nights wrote a thing up about me saying I'm ready to work on my own... aww yay =) I feel pretty good about nights, evening shift i dont feel.. quite put together lol I know my sleep is better on nights usually, though because i havent been able to be on the same sleep schedule for more than a week or two, im still kinda all over the place right now, which sucks. I did however finally buy some black garbage bags (cheapo, 10 for a lil over $1 lol) and i taped them over the windows (with the blinds and curtains over so it just looks like nighttime iniside) and ohh i finally slept the last 2 days! I had haphazardly put sheets over the windows but it wasnt dark enough. (its fine for a day or two, but i wake up too much if its not super dark). I work 5 days in a row again this week, but now thats dark enough im hoping i'll sleep better and goto bed early enough..

seriously want to goto curves. i know i need it. i need to cardio, that is easy on my joints, and i really need the muscles. tho i know i need more ab work, cuz i have no ab muscles like.. at all. lol

ack, i gotta go.. im going to go look at a place for rent......and theres a lot of complicated stuff that goes along with that... involving my "ex" boyfriend that wants to move back here and us possibly getting a place. and i dont know what to do.. =( i'm afraid he is right when he says that when it comes to me and him, we both have to jump in with both feet, the last 5 yrs have proven that much.. and damn, we really were really good together, as long as there wasnt 8 months of 8 hrs of distance between us...

i want to call the EAP thing thru my work and make an apt... i think i need it for a few things.. hopefully the counselor is as good as the one i saw 5 yrs ago thru moms EAP work thingy.

On the plus side to everything...
I discovered Cocoanut Milk Anti-breakage serum and holy crap my hair is soft! and smells like real coconuts =) I THINK this is the crap my friend courtney put on my hair after she cut it one time a few yrs ago and i had been on the lookout for it ever since.. I have really long (natural) red hair, and lately its just been.. blah. im over due for a hair cut anyway but yeah. i think i'll leave it down today =)

Okay, gotta find clothes and head out to check out the 4-plex.. its ground level, so no or very little steps.. thankgod. lol me and steps dont get along for obvious reasons... do NOT want to live somewhere with 13 steps again. lol looks cute.... we'll see.

...it still keeps dawning on me that I'm a Nurse heh... =)

cortisone shot-done!

2010-09-07T00:29:00.001-07:00

Well, i got my shot in my hip on friday... and just so you know, that "rare" "10% of people" side effect of cortisone flare... yeah, it sucks. Friday was the worst, saturday was pretty bad till i figured out that as long as i just layed down the whole time, i'd do okay. lol which didn't coincide with the plans of wanting to go back home to see my best friends baby this weekend =( She had him on the 31st and i was hoping i could spend the wkend back home... aw well =( Driving hurt too bad. That position did bad things for the hip.

Some reason my right SI joint has been pissed off ever since then, not entirely sure why.

I liked the ortho doc better this time, tho im still not super impressed by any means. I also decided to randomly ask him about this weird sharp pain in my knees every so often that is kinda sporadic.. turns out i have bursitis in my knees as well! how exciting hah.. its on the inside part of my knee, below the kneecap, apparently its also a point of attachment for muscles there so he told me to do some gentle stretches, and ice and the usual anti-inflammatorys.

i go back to work in the morning... should be sleeping, but ive been staying up pretty late so im not tired yet...woops. well, sorta tired. should probably try sleeping now.. its sorta dumb, cuz i work day shift tomorrow for "skills training" 10am-430pm, and then starting wednesday night, i'm on night shift (11pm-730am) for the next 2 weeks..(with only 1 day off for 10 days of work)... so the obnoxious part, is that ive been stayin awake kinda late this weekend, then tomorrow i gotta be up early, only to do my best to stay awake as late as possible, so that on wed night, im not falling asleep at work..and not falling asleep on my way home from work.. grrr..

stomach has been hurting the last couple days... would like that to knock it the heck off now.

okay, time for bed.. Ooh i made apple crisp tonight, pretty tasty tho i think the recipie used a little too much sugar, i put a lil less than it called for, and i used pretty tart apples, but aw well.. still good =)

i have a feeling tomorrow is gunna be long day..

but soon, hopefully with my hip calming down, and my SI joint eventually knocking what its doing off, then i can get my lazy butt back to curves... yes, yes i would like that very much.

distracted by reading about EDS...woops!

2010-08-20T11:37:00.000-07:00

So I was suppose to head out on the 4 1/2 hr drive back home for my birthday this weekend...and the plan was to go in the middle of the night after work.. but i was a bit too tired, so i showered and took some of my special help me stay awake meds (adderall from my sleep doc guy) and.....well, i packed.. but i got massively side tracked reading stuff about EDS.. wandered across a facebook EDS page, and its awesome! the photos make me want to get someone to take my pic doing the ones I can do, before my joints all get arthritis and things hurt too bad..lol dont have any documentation of any of me and moms weird stuff..Lol And the "You might have EDS if...." on the discussion board is absolutely priceless! =)

made a cd for the road.. im hungry but NOTHING sounds good..
MUST. DRIVE!
gah.. and now im dumb so im probably gunna hit traffic.. dangit.
And as much as i wanna power through the drive, i know i'll need to stop a few times so I dont end up with SI-related-muscle spasms, which would totally put a damper on my birthday weekend...

Im bummed that i procrastinated so much cuz now i wont getta spend as much time with my best friend tonight, cuz when i get into town, I'll be meeting mom and going out to eat with her.. have some stuff to catch up on, and an emotional topic i think im finally ready to talk about.

My joints hurt... unfortunately i think my reading about other peoples stuff, and various questions/MD concerns etc... it makes me a bit more aware of things. And... i did some of the stuff i saw in pictures, "to see if i could do it" - and i think things are a bit achy because of that too... wooops...

Have my apt with the Ortho guy on Wed morning...(which got me on the whole, EDS-info-topic, makes me wonder if i should print something out for him? Ive never seen a specialist for an EDS-related-deal really before so... (my primary has always just sent me to PT in the past) and i dont wanna get dismissed or something... hmm.. . suggestions?

K.. off i go! I'll be 26 on Sunday. yay! Should be a fun weekend, minus the drive. lol =) Then... drive back monday morning, and work 3 days, one off, then 2 more... eep!

Yup, still falling apart.

2010-08-18T01:41:00.000-07:00

I finally went to the doctor about my hips and shoulder... i probably was suppose to lose my insurance by now, but i'm sorta delaying the notification of change of income process...... Should have tried to go sooner thats for sure. She did a bit more than I thought she would.

Went in for some labs recently and got a call about needing to take more Vit D and iron supplements (damnit, i thought i was past this anemia thing... its been 4 years since ive had to take them, but my H&H arnt very happy, 10.9 and 32.5....woops!). Vit D is better, but not good enough yet. (least its not 14 anymore...lol). so...getta keep taking that too.. but everything else looks good, and my cholesterol looks really good, so yay!

So when i was on the phone with the lady, i decided to see if they had any apts in the near future...and i got one the next day! sweet!

So i saw her (i really my doc) and keeping in mind she hasnt really ever seen me for a joint problem before except my arthrtic hand. - So i decided to just show her what my shoulder does (its always slid forward, so i just pushed it back into place lol
She did a few more pokes and prods to my shoulder, and to my hips and lower back.. SI joint is a bit tender too apparently but it doesnt actively hurt right now. yay.

She was pretty fascinated with my super lax shoulder, and seemed abit surprised its staying in the socket at all. lol And said I have "Severe bursitis" in my hip. Did some hip x-rays. And referred me to an Ortho doc. Ive never actually seen one before for my EDS stuff, so that should be interesting. IF i can get an apt before my insurance goes away...

She is hoping for a cortisone injection for me in the hip, to help tide me over till i have insurance again and can do something a bit more long term perhaps. Which I'd have to schedule the shot when i'm not working for a few days...cuz im assuming I'll get the lovely "Cortisone Flare" like i got in my foot.... where it gets waayyyy worse for 3 days b4 it gets better... which will, um.. suck but least i only have one step where i live right now... lol

(I knew there was a reason i refused to let my crutches go into storage...i put them in my trunk just in case lol Course crutches should be fun this time with my shoulder bein how it is, and the arthritis in my hand Lol)

And she wrote a script for PT for hip and shoulder, but we dont think i have coverage for that...but worth a shot maybe. And she gave me a brochure thingy for rotator cuff injuries in prep for surgery, but it has some basic PT exercises I can do to help strengthen it a bit perhaps.

And my doc said something about how I should be a contortionist lol.. =) We joke around a bit heh. We also ended up havin a decent serious convo about me and nursing.. And she agreed with me about my "plan" to do floor nursing for as long as i physically can, and then I'll switch to a less physical nursing job.. theres a lot out there. Thats whats so great about nursing.

I did a bit of show and tell, cuz while she knew i had EDS, its never really come up before. She seemed rather surprised im as 'put together" as i am and that things dont actually pop out of place completely, based on how lax it all is.

I knew that damn Transporter gig was too much for me. Aw well. It got me through things financially, and it was fun in a way, when I wasnt in lots of pain. Lol And i did lose another 10lbs that month..Lol

I'm down 30lbs since christmas... I haven't weighed what i do now, since I was in 4th or 5th grade. Weird.. Am 167lbs according to the docs scale. Need this bursitis thing to calm down, so i can handle curves some more... I miss it. Might be able to do a modified version...? hmm.. we'll see.

k.. i gotta goto sleep. im so dang tired.. and oh man how i miss my super soft bed!! House im staying at? eh...bed is *okay* only because i brought my memory foam mattress pad.. but its not nearly as soft as i need it. Aw well, can't win em all.

ouch.. i think im doing the aleve deal, most of my bruises are gone,but i gotta get thru the next couple of days and it hurts dangit. Advil isnt cutting it.

goodnight!

Different and new hip/butt pain..

2010-07-29T02:56:00.000-07:00

Well, the (likely) bursitis pain seems to like when I sit down a bit.. and dont lay on that side and it REALLY hates grocery stores... a friend of mine came up to help me with the move, and he asked why i was holding my hip when i walked lol oops.. then because i was favoring my right hip, my left neuroma in my foot started acting up, oh come on! I need new orthotics or i need a new metarsal pad put in some shoes...

So yea.. that pain i mentioned at the well, base of my butt sotospeak (posterior , its gotten WAY more obnoxious.. like, it aches, a lot. Im tryin to sit down to help the side trochanter hip bursitis thing, but then my ass hurts! Feels like anytime i'm sitting, that I'm sitting on two umm.. balls all the time lol. On the right, it alternates between aching and burning More very obnoxiously annoying than "OMG THAT HURTS!" type deal... but its really frustrating. Sitting is usually the one position I can be in, and have things not hurt...

So as it stands, if i sit down, i have basically upper thigh/butt pain on both sides, if i stand or walk for any length of time, then i have right sided thigh pain that makes me want to grab my hip and sit down. This, is very obnoxious, esp when i'm about to lose my insurance and start my first nursing job, which is going to be 40 hours a week (5, 8 hr shifts) for the next couple of months..
Oh and I'm moving in a couple days and i have to be all packed and ready and out of my house! (which btw.... i suck badly and still have * alot* of work to do...). And since sitting hurts... where i am temproarily moving to, i'll have almost an hour commute to and from work.. so in addition, 2 hours of driving a day... until i can afford my own place again.

So yea.. according to research, this newly getting worse pain could also be bursitis, - perhaps ischiogluteal bursitis?

Why the heck would i suddenly develop all this dang bursitis?!

Stupid temp job I had to do for a month... its continually kicking my butt and i'm not even doing it anymore! lol

Hmph. =(

K, i need to go through clothes again/still, and goto bed... finding a semi-comfy position is kinda hard right now tho.. thankgod for my body pillow and super soft bed.

Hip Pain,,,,bursitis or arthritis?

2010-07-25T01:39:00.000-07:00

Well, i am FINALLY done at the Transporter job, and yup, i was at my physical limits... and a bit beyond. I was so dang sore after doing the 46 hr week, that i ended up sleeping...well, an insane amount. and ever since then, my right hip has been periodically bothering me, esp when i'm trying to do things like.. ya know, walk. lol

My right hip is the loser of the two.. and ive done a lot of physical therapy over the years for my SI, actual hip joint, and knees.. tho i admit i have sucked greatly at keeping up with those exercises i really need to be doing DAILY....

Other than having to take Aleve every 12 hours and Advil every 4-6 hours when on and off work to function and do the job at all, and basically getting beat up while doing it by the stupid 02 tanks and beds and elevators and my normal, running-into-everything crap..lol - I ended up with A LOT of bruises.. okay, fine.. no biggie. Cept at the end of the week, it felt like my whole hip was bruised, painful to the touch, but i almost had to put pressure on my hip itself on the outside of my thigh when i walked to keep it manageable, and i started limping.
then when i was tryin to sleep, i couldnt lay on that side.
i was sure some big bruise would show up, but other than the random decent bruises on my left hip and side, nope...no bruises there.. but dang it hurt.

ended up doing some internet searches and its probably either the start of arthritis, or its Hip Bursitis. While im quite sure i'll end up with arthritis if its not that anyway cuz of well, how the joints are.. it seems to more closely match bursitis... - tho i do have pain at the like..lower-butt area on that side, its a lot worse on the outside thigh area, like where they do the incision for hip surgery..and the same spot that the bone likes to jut out to the side sometimes if i walk wrong or show someone my "weird hip" lol..

i thought it would go away.. i havent done much but it started hurting again after a short walmart trip.. and seems to come and go, depending on what im doing. Apparently walking makes it mad..lol

mentioned it to mom this evening, who thinks that while I still have insurance, i should get it checked out... doubt theyd do anything.. and i dont have PT coverage... but may be worth mentioning..? but im pretty sure they'll just tell me to rest it..
which i'll do the most i can, but i start my nursing job in a lil over a week, and im moving this week sooo....lol yeah..
Maybe thats one good thing about it being 8 hr shifts and not 12?... maybe.. and i wont have QUITE as much running around as i do as a CNA, and not as much as i did as a Transporter.. soo.. yeah.

aw well. stupid new pains.

wish i knew when id have insurance again...

k its bedtime and i have SOO much to do its not even funny.. i managed to sleep and read today away and was 120% NOT-productive...Lol woops. =)

I'm a bendy nurse! =)

2010-07-13T22:59:00.000-07:00

this transporter gig is kicking my butt..
tuesdays suck for surgery!! too freaking many damnit.

on the plus side, most of the nurses keep introducing me, as a fellow nurse. After explaining the whole, "been a CNA for 5 years, im temporary, filling in a gap in the schedule as a transporter... though i did graduate nursing school last month and as of last week, am a registered nurse" - a patient asked "Oh so your an RN too?" - and even tho I had just said it.. hearing the patient say that?? woa..
Another patient asked me how long i've been a nurse (assuming that since i'm in the PACU/Recovery with everyone else in the same clothes, i must be an RN) - I had to stop myself from denying it..lol soo use to 'oh i'm not a Nurse, i'm an nrusing assistant' or 'Oh but i am in nursing school"..
nope, I'm a freaking nurse! hah
never had so many congratulations or whatever either heh since most of the time when the nurses introduce me as such, theres some explanation involved.

PACU is interesting but really my cup of tea. I'm learning crap though which is cool, and most have been super awesome about answering my questions or going into detail about various things. also did a jaw thrust on a real live patient hah only done it on the cpr dummies before. tho i have to stop this one from offering to let me do stuff i'm technically not allowed to do as a "CNA/Transporter" but thats okay.

meanwhile though... I had a patient yesterday that i would bet money that she either has ehlers danlos or another very similar connective tissue disorder. Her sister has had 3 hip replacements, her first in her 20's. She has always been very flexible and double jointed. skin that looks and feels like mine (i dont have classic but it definitely qualifies as very soft and velvety or whatever.. despite a total lack of lotion Lol. ) you could also see all her veins like me... while i dont have vascular type, i'm pretty damn see through in most places (except the normal places they go for blood draws of course! hah but you can literally trace all of the little veins throughout my wrist, palms and fingers.. ). she had early onset arthritis, same with her sis. and numerous numerous other various joint issues over the years..
she said "I think my sis and i have some kind of genetic condition" but shed never been tested or anything..
i dont know what like.. legally i'm allowed to do in that position, but i did tell her about a condition that runs in my family that sounds really similar.. and that there ARE genetic connective tissue disorders... etc.. tried to sorta refer her to her doc or mention it and mentioned abotu what a genetisit does cuz shed never heard of one.

she also said one of her folks was very similar too.... i asked. Lol

anyhoo.. im hurting. and i want aleve, but im already breakin out in bruises again. but it, plus the advil helps a lot...and right now just the advil aint cutting it. and i have 3 more days of this this week, then 2 days off that i need to pack, and then 3 more days.. they extended my 3 week contract thru next week. least i'll get overtime this week if i can physically make it through these shifts.

my right shoulder is increasingly worrying me. when i have the insurance for it, i really want shoulder PT. just doesnt feel stable at all. And im using it a lot with the beds im pushin and 02 tanks im carryin and lifting.

and if i put my feet up for any length of time, as soon as i step down again i get really bad sharp stabby pains throughout.. have to pause, wiggle my foot around and proceed with caution. use to get it a lot as a kid..

also have LOTS of new little very tender muscle knots all along my spine.. i sooo want a massage.

I like getting to talk to my patients and know them a little better.. and call me crazy, but i LIKE floor nursing.. and i LIKE night shift floor nursing...lol varies depending on the hospital but generally, i like it. My ideal would be to get on an Oncology floor..

Oh and it sounds like i'm going to have an interview at a local TINY hospital heh 44 beds. (compared to the 700+ bed place im working now heh). my clinical instructor for the last 6 months of school had a little chat with the hiring manager.. (she works in the OR there). and i got a call about a per diem night shift position (they start EVERYONE on per diem, and usually they have a benefited position within a couple months). I really liked precepting there. I'm a little afraid i'll get bored, but on some level.... a med/surg/tele floor that gets EVERYTHING from hip replacements to heart problems to pnemonia to infections is... somewhat better cuz then i get the whole gammet to start. (Instead of my only lead at the big hospital, which is an Ortho floor... and really? how many knees/hips/shoulders/backs can you do? lol i like the patients but as a nurse, its mostly pain control.. things dont go wrong very often (unless your my mom heh). so itd probably be more challenging in that respect....
i dont know.
whatever job i get, will be the right one..

and im single.. tryin to process everything expect that bit.

aw crap i gotta pass out.

'nother day of this tomorrow! Joints pllleeeeaaassseee stay where your suppose to...

"But I learned that moving on, is where I must begin"

2010-07-10T18:17:00.000-07:00

Well.. I'm a Nurse!! =) I passed my boards and am officially a licensed professional, a Registered Nurse ;)

I have to be out of my little house (its approx 350 sq feet...heh yeah, its tiny) in 3 weeks because of the new owners. I will really miss my lake and privacy and awesome kickass view (I took the picture from my porch =)

But.. just like moving 4 hours from my hometown was quite the adventure, getting through nursing school and supporting myself..
so will this next phase eh?

even though..
it appears that i will have to couch surf for awhile after i move.. everything will get thrown into storage and I have a few different people different places that have offered up their houses, spare rooms, or couches... I have pretty rad friends. =)

I just wish I had a Nursing job.. so i could, like.. plan? lol I'm working on it... but its a tough market for new grads out there.Esp because i REALLY want a hospital gig, I've been in hospitals for the last 5 1/2 years, c'mon! And according to my preceptor and clinical instructor for the last 6 months.... I don't need the "extensive" new grad training/orientation some places provide.. couple months of somoene following me around and i'll be fine.. c'mon!

My temp gig people really like me. Tryin to network there..
And they want me for all 5 days next week... oh, my, gosh.
Physically, I'm a bit worried. Last time after just 3 days i could barely walk and had over 20 bruises..lol
50 hours, 5 10hr shifts. then 2 days off, and then 3 more shifts..
they extended my 3 week contract to 4 weeks, and added 2 shifts.
which financially, is a godsend...
but man.
Guess i'll be training their new transporter though 2 of those days so i'll have a little help.

Afterwards, i'll only have a week and 1/2 left till I gotta be outta here.. eep!

Thankfully, i dont think i have a lot of stuff.... I had to downsize a bit when I moved here, and i've been gettin rid of steadily over the last awhile.. and i'm debating about getting rid of my couch (its not in great condition but i still really like it!) and my coffee table... just cuz they are big and take up more room... and i know i'll be getting rid of stuff as I throw things into boxes too.

my bed is staying though, in storage or whatever. I love my bed, it doesn't make my hips hurt like most beds.

I'm such an anal retentive planner, this is driving me insane...lol

I did however, throw my little AC in the window so I have been perfectly cool and comfy during this heat wave.. (i got my AC for $15 at a yard sale about 4 years ago =)

My boyfriend broke up with me. part of me is okay with it, part of me is trying to figure out if i should do whatever it takes to try to really get over him once and for all (i've bene hung up on him for nearly 5 years... 5 very complicated years).. or... i dont know. we're friends, as we have been all along.. hes basically my best friend. distance SUCKS. and my own insecurities and trust issues and neuroses dont help matters. Im trying not to dwell or think abotu it cuz i have too many other things on my plate.

Im fiercely independent, but i have to depend on people in 3 weeks.. like i never have before. I've lived alone, independently for the last 5 years.. this should sure be interesting..
my best friend (er.. chick friend=) Amy, she thinks I need to go back home and jsut be a "HoBo Nurse!" Lol... I wanna go back, i really do. I miss it so much, and i miss my friends so much.. but the job market is horrible there for new grads... so if i can land something up here, i'll be better off..

i've been eating quite a bit of advil and aleve.. well, stopped the aleve but i think i'll need it again this week. man I'm not looking forward to it. Least i wont be on a massive sleep deprivation deal from the get go. and im a lot better with controlling the beds now, so its not QUITE as crazy but man..

somehow it'll all work out right? i made it this far... I'm a freaking Registered Nurse!! My goal for the last.. smeg, as long as I can remember.. somehow everything else will fall into place. it has this far...

An Open Letter To My Brain..

2010-06-29T23:58:00.000-07:00

Brain,

Shut Up. your NOT helping things right now... shut the hell up, let me sleep and focus on my board exam between working my ASS off at this new temp gig, do NOT obsessively try to figure out what the hell your going to do about the "you have to move out by July 31st" letter received today, that will NOT help me pass the board exam next week, which i have to do or else all else is in vain...after exam is complete, and license is confirmed, you may at that time, obsessively try to figure things out and come up with a magical solution, or at least a somewhat feasible one, considering the complete lack of financial resources available, assuming that I may pack up my house and get rid of crap at the same time...

Thank you.

Ps: Please pass it on to my joints and ligaments that they musn't default on me now, despite the intense pain I am putting them through as well as the muscles in order to do my new temp gig, and the whole, Ehlers Danlos loose joints/ligaments thing, which I realize typically gives them a free pass to do whatever they please whenever they please, but... i beg of you, urg them to TRY to cooperate for now, just for now..

ouch ouch ouch..

2010-06-29T22:44:00.000-07:00

Everything hurts. Partly joint related, partly this new temporary gig i took (3 week contract) as a "Transporter" for the PACU unit of a major hospital (my 16th hospital i've worked at now.. i love per diem agency work sometimes).

No nursing job yet.

Take my boards on Tuesday..

Between working 10 hours, and a longass commute, I'm gone for about 14 1/2 hours.. tho presently its only spose to be 3 days a week for the contract.

and when i say everything hurts? Oh damn.. my shoulders, hips and feet are the worst. Usually...when moving a big ol' heavy as hell patient bed with a patient and all their stuff, you have 2 people do it, cuz those things don't usually go where you want and..oh yea, they are HEAVY AS HELL. And most of my nurses? "Oh that job is killer, I like my back too much! I wouldn't move those beds by myself!" - Oh geee, thanks for not coming with me when transporting ur patient then!

my muscles hurt, thats expected. eps the ones i obviously havent used very often lately Lol. Also woke up with 7 new bruises on my arms. including one real big one on my right forearm thats raised and hurts a bit if i bump it even lightly. and a bunch pretty close together on my left forearm, kinda small, bout the size of the pad of my finger.
partly related to the wonders of EDS and possibly partly related to the aleve im taking again..happened last time, but ive only had it for 2 days this time..(last time it took 2 weeks of solid regular dosing to happen).

...the aleve works better on keeping the arthritisy pain at bay though..

my joints are complaining, a lot. hips and shoulders keep thunking.. i just need to get thru one more 10 hr shift tomorrow, and then i can just rest, sleep and study for my boards from thur-mon, then take the test tuesday. damn..

then after thats over, i can let myself start worrying about the whole, offically being kicked out of her house by July 31st thing... and my complete lack of money, and my lack of a nursing job.

i have a friend back home (4 hrs away) who offered to let me live with her for awhile.. she has a spare room (and a hot tub hah). So thats my option unless something happens very soon. then maybe apply like mad to all nurising home jobs in the area since every single hospital refuses to hire new grads there.. (Ive been in hospitals for the last 5 1/2 years.. i HATE working in nursing homes..)m the market for new grads here sucks, but the market there sucks even more despite lots of big hospitals both places.

(and because of my background and how I am, what my preceptor and instructor said..is i dont need a stupid 6+ month with 2 year commitment "residency" position.. give me 1 month of following me around/preceptor-deal and i'll be fine.. hell my preceptor told me that im not only "better than" him when he was a new grad, but that "You probably surpass me even now...and i've been a nurse for 2 years!"..) - not to toot my own horn here but thats what i've been told by a nurse who followed me around for 100 hours!

cant think about it now.
got to sleep.
got to shower.
not in that order..

got to make my muscles and joints ease up.. or if they wont, just pllleeeeaaassseee don't go too outta wack just yet. i cant do this job if im gimpy. everything feels like its just holding together with someones used already-chewed-and-smooshed-on-the-sidewalk gum..

Oh yea, and my vitamin D levels were 14... now im spose to take 2000iu of vit d daily and 500mg calcium 3x's a day.. ugh.

shower time.. and then hopefully my extremely week-long-sleep-deprivation will take care of the whole, im still mildly coherent thing and freaking better shut my brain off...
and maybe wake up in slightly less pain...?

edit:
K..so i showered. and i counted..
over 20 or 21 bruises over everything i could see w./out a mirror.. wow. thats quite a few..tho some are pretty small, most perfectly roundish except the 2 or 3 pretty bad-looking ones..they look to be specific trauma related lol tho i dont recall banging my arm or my leg on anything recently i must have.

... i wanna keep taking aleve.. this sucks.

oh, and wherever i end up by Aug? I want a bathtub damnit! 2 years i havent had a bathtub... i have an AWESOME kickass view of the lake, and an awesome porch and yard.... and i live right on the lake... (in my dinky 350 sq foot cabin hah)... but ohh i want a bathtub..
if i stay with my friend for a lil while and throw everything i own into a storage unit that'll magically pay for itself, she has that hot tub AND a jet very deep bathtub lol =)

blah.

to self: head, please the heck up and let me either not dream, or dream something amazing.. and NOT work, nursing, job hunting,school, moving related...

having to bite my tongue...

2010-05-23T07:17:00.000-07:00

so I did my OB rotation at a local hospital the last 2 days. and today, i worked with a nurse who kept mentioning to every co-worker, about her calf hurting and wanting advice because she runs and she took a week off and it was just horrible to have "something wrong!" like a pulled muscle from running 8 miles+jump ropeing+ time at the gym etc...
she was bitching about how horrible this was (the pain was secondary, she was primarily talking about the "emotional" side of things of not being able to do something she wanted because her "body is starting to fall apart!" -.....

Ohhhh man it took every ounce of will power not to give her a glimps into what I've dealt with, and what Ive had is soo minor compared to so many other EDS-ers out there.. oh wow, so u pulled a muscle by way over doing yourself and and its SO "emotionally" challeneging to handle and come to terms with, and not just get out there and go running again.....
how about waking up and your neck tryin to dislocate itself randomly?
or all the other numerous lil things that happen daily that i usually just ignore or do my best to...
or ya know, the whole.. arthritis at the age of 25, and all my numerous braces and splints and HOURS of physical therapy tryin to hold things together...

no, she was EMOTIONALLY distraught, because she over-did herself RUNNING... which is something that i'm quite sure i would injure myself far more significantly if i tried to do.. besides, she ended up giving a lil demonstration on proper form to another Nurse, which i know for a fact i couldn't do for more than 3min cuz not even mentioning all the joint instability issues involved in my ankles/hips/knees and feet, but it would flare up my neuroma in my left foot despite the best orthotics possible, so id end up with what feels like someone taking a sharp very hot poker and stabbing me thru the top of my foot...not only when i walk but also when im laying in bed..

(side note: damn i hope i can either have decent insurance soon or enough money to pay out of pocket for new orthotics cuz mine are a bit too worn down to work as well anymore.. i keep gettin twinges of pain when im working and it scares me to have that pain again)

- also a lil irritating...
another OB nurse was complaining about not having any solutions for her triage patient with sciatic pain about to be sent home , and so i spoke up, and offered a few possible suggestions including a SI belt and some of the PT maneuvers that slide things back in place... not stretches, and not even the muscle tone ones tho i can't imagine those harming a pregnant chick, lax joints are lax joints...,anyway so the maneuvers provide almost insta-relief for a lil while.... and she was all "oh no no, someone with lax hips doesn't want to do stretches, it'll make it worse!, PT won't help something like that, its just a pregnancy thing."
I briefly then said that my experience with that exact pain is actually from lax joints and ligaments.. and that i wasnt referring to stretches at all... (i think i said it was from a genetic deal i have or somecrap)
i wasnt even suggesting she do any of the PT-stuff i know that has helped me, I was suggesting that perhaps if its that bad that she came into the ER and then OB triage, and shes still got a few months to go...perhaps she should see a physical therapist who could possibly offer some additional suggestions...

btw, shortly after this convo... the doc called back and suggested the patient follow up with her primary about getting an SI belt... HA!

oddly enough, my best friend is pregnante and was complaining of the exact same pain today.. i had her describe it and im all "ohh yea! Ive been dealing with that since i was 18 and i fell down those steps" lol... i did chiropractic and physical therapy for that. thankgod its only periodic now, and i have my belt as backup in case it freaks out when i'm working.

i havent been going to curves regularly again =( dangit. need to use my travel pass and goto one close to where im precepting or working, so that i can "unwind" while i drive the 30min-1hr home... must. work. out. my joints feel a lot better when I do...

i graduate nursing school in 2 1/2 weeks...
wow.
its actually gunna freakin happen!!

okay...its bedtime. brace is on, light is out, cats are on my legs lol..
nighty night.

Weather+joints+eds...i always forget

2010-04-20T15:43:00.000-07:00

Well, the weather finally changed, which now makes total since for why the last few days i've been having weird joint stuff and pain again...and partially with the whole neck outta wack thing yesterday. It was all bright and sunny and around 70 degrees, so it didn't make since. lol but now its 45-50, cold wet and rainy... Kinda want a barameter do-hickey like mom has.

i want to take more advil, drink another cup of the awesome tea my friend sent me home w/ yesterday, put on a movie or tv show on the computer and relax.. and maybe take a muscle relaxer...

Debating whether i should take a muscle relaxer or not.. they are real mild and they are a lil expired now.. so id imagine even a lil less potent than before. I know 2 is bad, but 1 is hit or miss... I hate tryin to find a balance between helping the really sore and tight muscle and knots in my neck and shoulder (residual from the intense spasms it was doing yesterday).... and the possibility of more things going out of place and hurting more cuz of relaxing the muscle tension thats holding other things together (like my SI joint and my hips).. sometimes they've helped, sometimes i've been in far worse shape because of them.

doin a lot better than yesterday. =) No more spasms.. relatively limited range of motion wise cuz of the muscles being a bit ticked off still. cant tilt my head left, and can turn my head left w/ really controlled movements.. anything sudden gives me pretty bad twinges of pain.. the baseline pain is totally manageable though =) Yay for the gentle chiropractor who was able to put my C-2 back in place!

i dont know if its real or imagined, but my hand arthritis has been a lot better since ive been rubbing the Topricin on it..(when i do my neck, figure i might as well do my hands cuz it says its good for arthritis too). about 30min later i notice it feels a lot better... hmm...

i think i messed up my phone job interview for the nursing position in Texas, outside Austin.. =( i need to listen to all the good stuff ppl say about me and talk myself up. Phone interviews are also a lot harder than in person ones... i couldnt tell how the 6 people on the other end of the phone were responding to me! Felt like i was blabbing b.c of that.. and went stupid when they asked me my 5 yr plan (duh!! BSN and get into critical care.. and learn the most i possibly can! hmph. didn't answer nearly as eloquently as i wanted to)... aw well.. if i dont land that awesome hospital job, isnt meant to be, right? i'll know for sure in a week. but im not holding my breath (tho my fingers are still crossed cuz itd be an awesome opportunity hah).

Need a decent new-grad nursing hospital job... and *really* want to land one before i take my NCLEX ..so i can plan better and figure out if im gunna be moving across the country.

k.. relaxing time. im takin a muscle relaxer and hoping for the best!

pop goes my neck....

2010-04-20T01:19:00.000-07:00

So..

i thought i'd be able to turn over in bed and get an hour or two more sleep..

turns out i was wrong.

I turned over, flipped my pillow and....then the sudden intense really bad pain started in my neck. Had me in tears.. i tried ot just lay there, relax the muscles and pretend it didnt happen lol.. psst. that doesn't work too well.

Ended up scooting, very slowly and very painfully over to the cord my phone was plugged into and got my phone. Called mom (who is really far away) who suspected the same thing.. that something in my neck sure wasn't in place. So she asked if i knew anyone who had a ciropractor that wasn't a quack.. thought of my friend Debbie (i know all of 2 people i consider friends here).

Called Debbie in tears...who asked where i lived and made a call to her non-snap-crackle-pop-chiropractor who agreed to see me =) So Debbie showed up an hour later and it took about 20-25min to get me out of bed... kept having insanely bad muscle spasms in my neck when i tried to move, at all.

Turns out my C-2 vertebre was way out of place.. and my right shoulder was subluxated which was causing a lot of the neck pain when i moved my arm. And, a few ribs weren't in place as well.

(thats the arm ive never had pain per say, but it definitely doesn't feel like its in the right spot a lot of the time..and i end up popping and moving around a lot when i sleep and when im driving).

She uses pressure, alignment, energy and your own muscles to get the bones back in place. It was interesting.. way different than previous chiro stuff i've done...(tho the one i trust also uses energy -something to tell whats outta wack).and caused a lot less pain than the sudden jarring adjustments i've had before. She said normally she'd do a lil more extreme complicated maneuvers but since i was in so much pain, she went the slow route.. spent about an hour on me. But when she was done, I could turn my neck.. and the insane muscle spasms had stopped. Still hurts but its a manageable hurt.

She told me to take my alieve, and also suggested arnica montana homeopathic stuff for further anti-inflammatory help.. and this other homeopathic liquid stuff called "Rescue Remedy" for relaxing, to in turn calm the muscles down more, if im more relaxed...and said i should start feeling better but that i need ot really sleep and just rest and let the muscles and joints calm down. and to ice it.

So, my awesome friend who saved the day whos way into the natural/herbal/homeopathic stuff, got me the things..and also got me Topricin, which i had heard about form someone else who praised it for joint pain and healing.. - the lady at the supplement store recommended it.

And mom suggested a neck brace to lounge around the house in... to give my muscles a break. Why not...never hurts to add another brace to my collection!!

I'm a lot better than this morning by far, but i'm still hurting quite a bit. nervous abotu tomorrow (class 6 hours....oof) and nervous about going to sleep and laying down and the ability to get back up.. but i think it'll be okay..

Debbie and her awesome family mommy'd me today which, with reluctance, i accepted graciously. She made me this reallllllly good tea (then sent me home w/ a bunch) (Tulsi Tea.. also spose to help w/ healing and stuff) and her hubby made this awesome huge bbq dinner (beef ribs, pork ribs, chicken, corn on the cob etc..).. I wanted to come home initally but im glad i stayed. I had fun, and it was kind of nice not having to cook or eat like crap or get my own ice for a change haha One thing that sucks about living alone.

Do not know what i wouldda done w/out her...seriously. I couldnt freaking get out of bed.

She doesnt think i should goto class tomorrow and i should borrow someones lecture on tape but i need to.. i dont do welll with lecture on tape, i fall asleep. Dont know how to explain to ppl either... "um.. i tweaked my neck/slept wrong, it'll be fine." - gotta down play crap.

Besides, only 4 more days of class.. least i did this today and not tomorrow...

im gunna get 5 hrs of sleep b4 i gotta be up. ugh. if its *too* bad i'll skip the last couple hrs but i think i'll be okay.. im better than i was.

Mom mentioned about my car wreck a few yrs ago... i had messed up the same vertebre, my old awesome chiropractor fixed me then. it wasnt anywhere near this intense though, nor did it cause oober bad spasms. ....and i know I've tweaked it off and on since then, usually in bed or turning my head too fast... but it usually slips back into place shortly after.

I really really hope this doesnt start doing this with any regularity or frequency..

... my friend pointed out that i managed to partially dislocated my vertebre, in bed... and i wasnt even doing anything fun! lol Apparently that takes a special kind of talent Lol.

I swear i always hurt myself doing mundane normal things Lol

K...bedtime now. get my precious 5 hours of sleep.

last quarter of nursing school!

2010-04-06T00:53:00.000-07:00

Well, I am a bit proud to say i did stick to my goals of going to curves regularly.. well, until i went to Florida (courtesy of a couple friends who live there, had some extra cash layin around and decided that i deserve a kickass break a long way from home =). But i went for 7 weeks! And, I in that time i lost 5lbs and 6 inches... I'm down about 10lbs since christmas-time. And despite 3 weeks of spring break and not working out, I've kept it all off.
And..

I havnt had any new weird joint issues either since going =) Other than my hip doing weird things and hurting a bit from sitting in the same position on the plane for so long (7hrs in the air total).

I was doing really good about wearing my hand brace at night for my thumb but then over break i got lazy and stupid so that pain is coming back, tho not as bad as it was (course I start school tomorrow.. and the next 4 days I'll have 6hr lectures I'll need to be taking notes for..woops. May need to wear my brace in class methinks).

So until it calms down, I think im gunna try wearing it around the house again like the doc told me to, wear it when I work out (getting my butt back to curves tomorrow) and when i sleep and have lectures... no need to extend it more than i need to and stress the poor joint anymore.

Its been really nice not having other joints act up though.. its also felt really good being able to be more active. and losing some weight is an added bonus. =) (when i went back home... i kept getting "wow, have u lost weight?" and various things.. only 10lbs but apparently it makes some kind of difference...

It really helps my motivation for going cuz im NOT going just to lsoe weight or for some superficial reasons.. im going to try to be HEALTHIER and to hopefully be easier on my body and to maybe prevent un-needed pain/ligament issues by keeping my muscles stronger and healthier.. i also found i tend to do my PT exercies when I'm in work-out mode too.. well, not as much as i should but far more than I do usually..

2 months until I graduate...and my whole life changes again.. oh wow!! I'm also thinking of relocating to Austin, Tx area for first nursing job... my boyfriend and i keep discussing it. cuz of the unfortunate news from my old hospital and the high unemployement rates (15%) and the complete lack of new-grad hospital jobs back home...and the good prospects he has for his emt/paramedic aspirations. ive put in a few applications so far in and around Austin, so we'll see?

gotta get to sleep.. i worked nights this wkend and then messed w/ my meds to see if i could decrease them.. apparently i can't, cuz today i couldn't get out of bed to save my life, slept thru 4 important phone calls, slept through 3 or 4 alarms, didn't send in my timecards so i wont get paid this week, didnt hear 3 txt messages, didnt call the pharmacy about my meds, didnt pay my water bill, didnt get my book from the school bookstore and didn't goto curves... all because i couldn't wake myself up. ended up sleeping 14 some hours.. ugh. Have i mentioned how much i hate narcolepsy sometimes?

No more trying to decrease my damn meds. If I need them, I need them dangit. If it helps me have a life and FUNCTION, then sobeit!

arthritis it is...at the ripe old age of 25

2010-01-25T18:43:00.001-08:00

Well, I now know what arthritis feels like... my doc kept saying "but your too young!!" but she basically ruled out everything else. She gave me a nice splint/brace thing im spose to wear.. tho didnt tell me when i can stop wearing it... and told me i shouldnt be taking notes in class and such. Apparently I have early arthritis in the cmc/mcp joints of my right thumb and along the pinky side too, which is the pain ive had off and on for a few years now..
she gave me a script for hand physical therapy but we're not sure if my insurance covers it...so she said i can also go on youttube and look up videos there if i want to.

i wanna try alieve/naproxin, cuz it has helped in the past and i dont have to take it as often as Advil.

its... kinda scary. i knew all along with the EDS thing that this was a risk or i guess, that itd affect me "someday" earlier than it was suppose to... but its scary in the whole.. im almost a nurse and i need my damn hands! somethings around the house i can alter or do things differently, like i have been the last 2 months (ie clasping the bra first and then putting it over my head) but in the professional way..and in the way that "this will never go totally away" - it scares me..
ive been fortunate enough with my previous injuries that they were temporary, itd hurt ofr awhile and itd go away, or i had to learn to do things a lil different to make it manageable, or i could get my SI belt and wear it when i need it, or do my PT and thatd take care of some stuff...
but this? it wont go away and i know arthritis... it gets worse over time! once its here.....its here. and i just need to figure out how to stop bitching and deal. period.
"so whys ur thumb hurt?' "oh, ya know.. arthritis."

Oh well. just got to come to terms with it and deal. accept it and move on. nothing else to do. and figure out different ways to hold things, grip things and use my hands.. and finish getting through school..

i need to get my butt to curves too.. i think with the new brace, i can limit use of my thumb and support my wrist and such.. so i can make sure i dont mess anything up more. Maybe i'll try going tomorrow after class... thatd be good..

it could be worse.
i need to shut up and deal.. and i need to do stuff to help either prevent more joint wear/tear or least limit it. and improve cardio and strength and tone and endurance.

and study for my lecture tomorrow on spinal cord injuries and hospice.... as i said, it could be worse. i need to stop bitchin and be thankful i can use my hands at all.

more thumb bitching..=(

2010-01-17T11:46:00.000-08:00

I seriously need to work out... I'm going to start having all sorts of other joint issues this quarter if I don't. I do Curves, and since they pretty much all require grabbing ahold of things, i'm leary about doing it. Moms advice "Don't" - but i'm stiff and sore and need to friggin move..and its a lil too cold to try to do stuff outside w/ the whole, exercise-induced-asthma deal.

why wont my body cooperate? we had a deal dangit! No breaking down till break, and then it needs to fix itself by the time school starts back up!

I worked on Friday, minus brace. I did a sitter-shift, and then forgot to re-brace b4 bed....hurts worse again, including a not-so-nice ligament that runs along the front knuckle of my thumb too. Very nervous about this week, but theres nothing I can really do. Have to do clinicals, Period. I'll load up on the advil and call it good i suppose, and hide any grimacing from the fellow nurses and esp my instructor. Its only 8 actual clinical days (not nearly enough for my last quarter b4 preceptor-ship), a hospice rotation and ED rotation...

Yea, i'm making a doc appt this week.

k.. back to studying. I'm tryin to bitch about it here to prevent me from doing it either at school w/ my friends back home who don't really understand..

i want a new thumb please

2010-01-15T02:43:00.000-08:00

well, i got through the first 2 weeks of school and 4 tests in SIMS lab..including the med and math tests that couldda kicked me out of the program. yay! All while wearing my stupid thumb brace..

it still hurts. and im now very worried about my 3 days of clinicals next week. Lecture and writing didnt go so hot... i might attempt to bring my laptop next time but i dont think i can take as good of notes on it as i can written... hmm.. might be worth it to decrease the pain tho..

its been about 2 months now, so maybe its time i goto a doc.. i dont know what theyd do besides maybe give me a better brace. i could beg for a cortisone injection to get me thru this quarter.. but i dont think thatd help in the long run. and i cant keep it immobilized during work or clinicals.. but oh well, i should make an apt tomorrow.. worth a shot?

the joints on the pinky side are starting to hurt a bit worse too.. lil worried about that but not as much as getting thru this quarter. Oh and popping my thumb...BAD IDEA!! oh my that was a bad idea...

i have a lil over 5 more months of nursing school.. man i can't wait!

as long as i wear the brace 98% of the time, it only hurts when i use it.. otherwise, well, we'll not go there. but its still primarily the cmc thumb joint.

wonder if ring sprints would help someday... i only have 2-3 fingers i think theyd be beneficial for.. but might be worth it sometime in the future b4 i really need em on all my digits.

Oh, and I do in fact have Narcolepsy. lucky lucky me lol least i have an explination.. and stimulant drugs now that help me stay awake =) I got this one thats AMAZING! But my insurance doesnt cover it so i cant get more..(he gave me a free trial).. but, its so phenominally awesome to feel....awake. hah not to have this background desire to pass out 24/7. to be able to come home, sit down..do something online, and then GET BACK UP! and go do something else. hah i dont feel wired or anything, just... awake. lol alert. i like it =)
while i dont want to take it every day (as prescribed), i think this will help me get thru my 6am clinicals a bit better =) i'll also be getting more ritalin or adderall since i cant have the wonder drug.... ritalin helps, but i dont feel as "normal" on it. havnt tried adderall yet.

ok, i think im gunna pass out... im tryin to stay up late cuz i told work id be able to pick up a shift this wkend, so i need to be somewhat on my night schedule.
and that way, i can start studying my butt off for the test next wk right b4 clinicals.

and still with the thumb!

2010-01-03T16:47:00.000-08:00

Well, school starts on tuesday and i was sure hoping my thumb wouldda calmed down by now. I've spent basically the last month with it ace wrapped and half the time in moms wrist-somewhat-thumb support dealy.. it'll feel better after awhile of it being wrapped up, but soon as i wake up in the morning or take off the support, its useless all over again!
I did my sleep study for Narcolepsy this last week (wont know the results for another few days) and my thumb was killin me the whole time.. just ached and hurt and the cmc joint was just, pissed off at me. lol so i finally decided enough was enough and i bought a lil $14 immobilizing support brace thingy. Which helps, cept as soon as i take it off it hurts within 5min. just doesn't hurt all the time now.. i shouldda gotten this in the begining i think, maybe itd be better by now? =( it doesnt immobilize it quite as well as id like but its pretty good a lot better thna the ace wrap was.

Once again i'm worried about school... this quarter is pretty much non-stop and we start off with 4 days of all day SIMS lab, then lecture for 3 days and then 2 days of computer training..and then lots of clinicals.. i'm worried about wearing it in class, just like i was last yr and the left wrist brace.. this is a bit more obnoxious though and since a lot of our lil skills require ya know...thumbs, i'm a lil nervous. and i have no answer for "what'd you do?" cuz.. i pretty much just woke up Lol. and it has to be my right thumb?! grr.. but if i dont wear the brace, i know from experience of the last month and 1/2... that it wont get better without it..
I already took 5 days worth of prednisone from mom and dad, 20-mg a day..to see if itd help the inflammation in the joint. which was nice, while i took it. unfortunately as soon as the days were up, it hurt as much as ever =(

On the plus side, I had a pretty awesome christmas and new years. my boyfriend met my family (and likes them!) and is now the proud owner of my sisters 2 cats she has been tryin to give away hah.

I'm also nervous about the future potiental problems of this joint.. because i use my thumb! i cant have this brace in clinicals... and i dont know the instructors either and i dont want to tell t hem about the EDS for all the reasons i mentioned before.. do i just say "it hurts but it'll get better" and then just pray it fixes itself in the next 2 wks? and wear my brace anyway in class..? then come clinical time, maybe it'll be better... and if its not, i'll just deal with it anyway...? minus the brace..

note taking wont be very fun.. my hand writing a lil goofy. maybe i could take notes on my laptop.. for the 6 hr lectures we have next week.

I havnt gone to a doc about it but im pretty sure theres nothing theyd do. cept maybe give me a better more immobilizing brace. i've only had this thumb brace for 4 or so days... so theres hope that it'll really help.. i am gettin better at using my other fingers for stuff.

is this the start of forever arthritis in that joint? and/or is the pain a subluxation? is it a tendonitis sorta deal? i dont know... maybe i will try a doc if it doesnt get better..? maybe there is a less bulky brace or something i could use...

I just wanna get through these next 6 months so i can be DONE with nursing school and get a job and move back to my home town.. then at least i'll have income and sick days and everything.

stupid thumb

2009-12-12T15:21:00.000-08:00

Yay! I'm done with the quarter. And officially only have 6 more months of school until I'm a Nurse. =) My boyfriends new job as a maintenance supervisor is paying off, with massive overtime.. thanks to a cold front of sub 0 temps and a lot of frozen/burst pipes.. lol He'll be helping me out with rent to get through school, as hard as it is to accept that help...Been told that I'm fiercely independent, espicially when it comes to money but i guess sometimes you have to accept a lil help.. and i plan to help him out too when he goes back to school.

my right thumb has been killing me! ouchies ouchies... its hurt off and on, started being bad over Thanksgiving, i think from gripping the steering wheel too hard or something. Use to be pain on my pinky-side, and down the muscle and into my wrist after chopping lots of stuff or driving...but this time its my thumb. Mom gave me a thumb stabalizer wrist brace deal to wear when i was complaining on turkey day and after wearing it for multiple hours, it did calm down (also took a bit of advil). After babying it for a wk, it stopped. Till last night......grr. I was chopping up stuff for this Japanese Curry stuff..only thing i can think of that involved that joint or the muscle there..but oh Damn it hurts.. i ace wrapped it cuz it kept hurting when i was sleepin.. i dont have a good thumb immobilizer at all, I have a few wrist braces though from last winter when the tendons on either side of my left wrist were hurting bad for 6+ wks.

..i just typed in 'thumb pain' in google, and went to the image search to find a pic of pic of where it hurts on me...found one that shows exactly where it hurts by far the most, and it talks about the CMC joint of the thumb..

Wonder if its the joint itself or the ligaments tyin to hold the joint in place that are screwing with me.. i hate my ligaments. I demand some news ones!

Im gunna ace it for awhile and if it keeps up, i might look at one of the thumb braces.. couldnt hurt to add to my collection of various appendage supportive devices..lol

...least i'm on break. and not in the middle of clinicals.

i'll ignore the fact that i have a good 20 hours of holiday cooking and baking to do, most including things like 30+ min of active stirring and then scooping and such.. ugh. (divinity, 2 kinds of fudge, almond rocha, peanut brittle, etc etc...)

i started decreasing my desipramine in prep for the sleep study.. first few days i dream a WHOLE BUNCH and then probably by mon or tue when im not taking it all, i'll be sleeping my usual 12-15 hours and wont wake up to noises/phone/alarms etc.. and passing out randomly when i don't want to. not looking forward to that. amazing how i functioned without it for most of my life...who wouldda thought itd help so damn much.

speaking of sleep, im going back to sleep.. nightynight

general aches and pains, they'll pass.

2009-11-16T13:51:00.000-08:00

stupid joints...all stiff and sore. having to be a lil extra careful when i get out of bed. Yesterday, T (boyfriend) and I were chillaxin on the couch.. and he gave me a really funny look when i suddenly yelled "OUCH!" and grabbed my shoulder.. While i've never had a dislocation *knock on wood*, i can intentionally and accidentally move it a certain way that it sure feels like its about to pop outta socket, or something along those lines. Hurt for a lil while after that... he looked at me weird, i muttered something about "that hurt.. it should be better now, ignore me."

im finding i still dont like to let on to hurting when i do. i just quietly go take some more advil and such when i wanna.

can't decide if its the weather changin, or too much sitting-on-my-butt-&-not-moving-enough.. feet, ankles, wrists, fingers, shoulders, hips, knees and back hurt.. not too bad, just, annoyingly there. and uncomfortable for sleeping and such too. back/legs feel oober tight, muscle wise. damn loose ligaments. i always wanna keep stretching to find that position that it finally feels nice and stretched but somedays, i dont get that relief...and on those days, i REALLY shouldn't try cuz i'll just end up jacking myself up more.

heh to anyone whos ever seen Achmed the dead terrorist by Jeff Dunham.. when he says "I NEED SOME LIGAMENTS!" i cant help but relate. lol

aw well. could be worse. and i know im fortunate enough that i dont feel each joint all the time, 24/7 like my mom and so many other folks...and that my joints dont actually pop outta place..
i *REALLY* should be doing my old physical therapy exercises...

last test today, 90%.. im okay with that =)meant lots and lots of studying leading up to that test tho. Still so much to learn though from now till i take the Nclex.. i also eat entirely too much popcorn when I study, im pretty sure i wont want to eat another kernel for a year+ after im finally done with this program (I've found it helps keep me awake, to be snacking on it a lot... and as long as i dont throw butter on it and stuff, my hands don't get all oily and gross when i turn pages).

Will be interesting if the sleep study yields something..and if i end up with a stimulant to try.. probably will end up consuming way less energy drinks and maybe even less popcorn Lol.

It feels MUCH later than 2pm. Maybe i'll try for a nap... i dont have any urgent pressing school matters until tomorrow (CCU rotation followed by the last 2 days of clinicals, and then the 2 mental health rotation days).... then i'll have a bunch of papers/assignments to write. lol

okay, enough bitching =)

ramblings...nursing, joints and narcolepsy

2009-11-12T20:42:00.000-08:00

I should be working on my careplan... I keep putting it off and I'm not entirely sure why except that, oh yea.. I'm feeling a bit lazy. I also have a test on Monday I need to be studying for. Oh the joys of nursing school!

My hips and a few other random joints have been bothering me this week, just achy, could be worse. Other than having to wiggle my knee cap back into place every so often when I walk, I'm fairing better than I did last fall-quarter so yay =) After my final on Dec 8th, I'll only have 6 more months of school till I'm a Nurse and I can move back to civilization =) My old boss recommended I tell the employee health dept at my next job about my EDS, so that I don't have to use all of my sick days for it and get a written warning again...I don't know. I'm leary about that. I don't call in sick unless I couldn't walk, and even worked a day or two i really shouldn't have.. but We'll see how it goes. If i move back home, I'll probably get a job at my old hospital (they want me back =) but if T gets this job in the middle of no where-oregon (the boyfriend =), I'll probably be seeking a job there if I can get hired... (tho i don't wanna.. i miss my home city).

I'm also trying to goto curves more often which is good, except I'm not doing very well at it on clinical weeks. I have evening shift clinicals (THANK GOD!!! *BIG GRIN*) so I'm useless up until I need to go, and after...well, curves isn't open at midnight lol

sidenote: the only chick in class I really like... is failing out =( She's failed all 3 tests so far and the thought of being stuck up here alone, without her to talk to and chill with at lunch durin our 6 hr lectures, for my last 6 months... is waayyy not appealing. =( and she works way harder than I do, i feel bad.. i want to help her but I don't know how.. =(

Oh! other weird-medical-crap:
I'm having a sleep study done in December... to check for Narcolepsy. Sleep doc (neurologist) tried me on Mirapex for possible restless leg (umm nope) and all that did was make it even harder for me to stay awake during the day. So next up, night time sleep study plus daytime Nap study. I do seem to fit the critera for Narcolepsy, have most of the symptoms oddly enough. besides cataplexy (...which is good, I'd imagine itd be bad if i fell over when a pt startled me...lol)
Should be interesting... never tried sleeping with a whole bunch of crap attached to me before... My only concern is that its at night...and since i worked nights for 4-5 years, and was a night owl before that, the ONLY time i sometimes have trouble sleeping, is AT NIGHT! so we'll see. =)

i should go do my careplan.. had the same patients all 3 days last time, I'm sure i can come up with 3 nursing diagnoses for one of them... ! Dont wanna put it off to the last week of clinicals (next wk) if i can help it. I worked with an AWESOME nurse last time... and I did more IV piggybacks than ever before =) and i set up TPN twice, and d/c'd an NG..and a few other things =) My first nurse was very student friendly and explained all sorts of stuff, answered my obnoxious questions and taught me tons.. and praised me for seeking out rather complex patients to learn from. Which provided a great framework for my next 2 nurses, who wern't nearly as teach-y (can't win em all, its probably oober annoying having us smurfs around!) but I felt pretty confident with what I learned from my first one so it worked well anyway =)

I haven't worked for awhile, so i've been oober sore afterwards.. need to get use to being on my feet for 8-12 hours again and build up the right muscles to keep everything in place.

okay okay, enough procrastination.. school focus time..

stupid foot... i demand a refund!

2009-08-14T03:09:00.000-07:00

whew.. guess its been awhile hasnt it?

body wise ive been doin better than expected for the summer..
ive hardly worked and that needs to change.
i have a boyfriend as of this last wkend... am now with the guy ive been in love with for a few years now.. =) we'll see how that goes.. we have a great friendship but he is going through some rough times and has a bit more to go through before hes out of the woodwork. i downplay my painful self though..and maybe i shouldn't.

spent the wkend at his place and i think a combo of his hard mattress and the weather changing had me sufferin silently for a couple days with sharp stabby sciatic nerve pain.. and i didnt want him to know so i just, well.. tried to keep my hand off my lower back and did my best to grin and bear it. hes known me long enough to know that i'm gimpy and stuff but... i dont know. probably not a good idea to downplay it so much but... *sigh*

I promised my sis awhile back that id bring her up here to where i moved to about a year ago to see my cabin by the lake and such... so shes here with me now. and i screwed up and she is gunna be here an extra day....
which well... i kinda wish wasnt so. im ready to have my place to myself again. its been a lot of yrs since weve spent this much time together and while its gone better than i thought it would, i think we're starting to...well, just have enough of each other. lol

oh ya..
so im sitting here screwing with my new phone, tryin to figure out how to get my ringtones on it and i wiggle my foot a bit (roll the ankle, normal stuff) and suddenly SHARP STABBY PAINS!!! ouch ouch ouch... i thought it was my neuroma pain but this is closer to my ankle.. and it is frighteningly similar to where i broke it almost 3 years ago... like, same damn spot..
so uhh...yea. it freaking hurts.
and i dont know what to do about it =(
i crutches are in the shed....
but even with em, i cant get up my little cement-like-steps cut into the side of the hill to get up to my car... less i crawled and i dont wanna do that.
im thinkin maybe something shifted outta place in there?
i dunno how to make it normal..
everytime i move my toes or move my foot much i get a very sharp stabby pain, thats pretty localized.
this freakin sucks.
i need to work.
i cant be foot-gimpy..
and i didnt even do anything to it!!

im hoping that it'll fix itself while i sleep...?

its very very painful though =(

i dont like it =( I hate pain i cant explain.. it annoys me greatly.

its not the kind of pain advil will help with... tho i took some anyway.

also doesnt feel like icing it would help it any..

its only when i move the damn foot.. when the lil bones try to go moving around... maybe something shifted outta place and trapped a nerve...? that possible??

i know my ligaments are loose and goofy.. just wish i knew what to do about it.. =(

stupid right hip...

2009-05-25T03:27:00.000-07:00

i think my hip is confused...
My body and I are suppose to have an understanding, no injuries or severely disabling pain until after the quarter is over.
Now I did celebrate on Friday being done with Clinicals.. and met up with my one friend in Bellingham and had a few drinks etc..
but I still have 200 points worth (out of 300 for the class total) of tests in the next 2 weeks. and of course 2 weeks of lecture.

Last wkend every time i stood up i had problems with my hip.
Today, i'm having problems standing. It hurts a little just sitting here but not too bad less i move too much. Cant find a comfortable position.
But when i go to stand, it sort of feels like both the SI/Siatic nerve pain is there but also coming from the hip itself, i have sharp pains radiating around the hip and down my thighs when i either bear weight or lift off from bearing weight..

iv had something like this off and on before, that caused me to stand in one place for 10min after work one day. coworker was serious about getting me a wheel chair to wheel me to my car.
i refused. eventually it fixed itself sorta.

took me 10min to get out of the bathroom and come over to the couch cuz i couldnt put my leg down enough to walk..

I wanna know what is going on in the joint to cause it. Is it a sublux type deal?
Since i've never had a dislocation, im not entirely posisitve what a sublux feels like.. or how it manifests itself with some of my joints. and thats not exactly something one can ask just anyone..hah

Its obviously a joint problem like all my crap is but.. i wanna know mechanically whats up with it, i dont like having pain i can't explain.

not to mention it hurts. and while i get away with very minor walking for the next day or so, by tuesday i gotta be able to walk.

if i had my crutches inside and not up my stairs and in the locked shed, i would contemplate using them.

tried my sacroilliac belt placed a bit lower so its over my hip joint more and it didnt really help.. i tried wiggling it and moving it and a couple of the PT things i was taught to do when it comes to my SI Joint being subluxated..
but this feels more actual hip than SI... well honestly it feels like both. but SI i know what to do about usually... and the main symptoms indicate primarily hip. its lower, its more to the side sorta and radiating out and around.. and its not as much in my low back like it is when its mostly SI.

it did this last wk in addition to the weather-related pain and problems but it would stop after 40-50 seconds after standing in one place..
this isnt fixing itself yet.

i didnt goto curves all week. mom told me not too.. and then i got oober busy.
need to go this wk.
too much studying to do before tuesday though to go b4 then
that,and the whole.. pain when tryin to stand or walk thing at the moment.

i slept on my friends bed on friday cuz i was a bit too tipsy to head home and his bed is too hard for me. i kept having to change positions cuz my hips kept freakin out. weird feelings inside the joint and almost muscle-spasm-like-pain as it slowly builds. always happens on hard mattress'. i love my bed..its all soft and squishy and doesnt increase joint pain. =)

ok.. back to studying.. gotta find a way i can sit ehre without it tweaking out more... wish i knew whats wrong with it so i can find a way to at least not make it worse.. and possibly correct it.

weather pain....ugh

2009-05-19T14:56:00.000-07:00

So.. i never noticed a change or increase of pain when it came to the weather till a couple years ago. and even then it wasn't too bad/severe. but every so often now, things just HURT and i dont know why. Joints mostly and radiating pain secondary to the joint itself.
This whole weekend my hips have been killing me. I was tryin to just take 2 advil instead of my usual 3 or so, just cuz my prof is anal about advil killing ur kidneys and i have taken a lot of advil reguarly since i broke my foot a couple yrs ago.
but.. damn!

i spent the weekend writing a research paper (Pancreatic cancer and the nurses role) and so spent a lot of time sitting. but i usually spend my weekends sitting and studying anyway..
but every single time i stood up, i couldnt walk right away. sharp stabby pains down my legs and feeling like my hips definitely were not where they should be or wouldn't support me at times. I've had similar sensations and minor variations of this, but quite this regular as it was all weekend. and this morning (err afternoon seeing as that i went to bed at 7am), I HURT.
Mostly again, my hips...achey, radiatiing, sharp, dull etc.. I have a sacro-illiac belt for my SI joint... i keep finding myself gripping on either side of my hips and tryin to hold em together.. so i m thinkin maybe i'll give it a shot again.
which i hate using it cuz well, it makes me lumpy Lol but it does help for my other SI issues i'll have sometimes...

so, tryin to figure out a reason for this increase of pain (and i had been doing surprisingly well for the last 4 or so weeks), I was thinkin about the weather..
its been 70 degrees for 2 days, then it was 50 degrees and raining all day yesterday. now nits about 55 out there and over cast..
so. i called mom, who is basically a walking barometer.. (and has at home to confirm her suspitions) and asked if shes had an increase of pain this weekend.
and she said "YES!" with her its mostly her feet this time but shes had her times of not being able to walk or move either. She said it is the weather and t he barometer changes.. she said her and my sister (who also has EDS and fibromyalgia like mom) have been pretty miserable this weekend.

well, there is comort in knowoing i likely di d absolutely nothing to trigger this. and that im not completely insane in my feelings of this new bad pains. well, cept now i can be all "DAMN WEATHER! ITS ALL YOUR FAULT!"....uh...maybe i'll keep this one to myself...haha theres a reason im posting here and not on my myspace..

what sucks is i gotta hop in the shower and then head off to bellingham to go pick out my patients for the next 2 days. so my joints really need to stay in place.. thankfully its the last 3 days of clinicals (2 days of on the floor and...amusingly enough, one day of following physical therapy around).

then clincals will be done this quarter. yay!

I asked mom about curves..cuz i want to exercise but im torn on whether it'll help or make me worse or if i'll even be able to tolerate it..and she suggested holding off completely till things even out a bit. She has more experience with this weather-related-crap than me (she's pretty much been a walking barometer her entire life, since she was 10 yrs old). She said things are inflammed and mad for no reason and stressing them out even more will likely make things a lot worse..
hmph..
i have a feeling shes right this time..
if i had access to a pool, the idea of THAT sounds really good/nice... but alas, no pool or bathtub.
or hottub. lol

So i guess i'll pop 4 advil and take a long hot shower. then strap my hips in place with my belt..and be on my merry little way and pray things stay in place, mostly at least.

oof.. =(

finally joined curves..

2009-02-26T21:54:00.001-08:00

So i finally joined curves again.
oh it felt great to MOVE.
i worked up a sweat but wasnt like, panting for breath or felt like i over did it at all.
the lady took my measurments and weighed me (..i like their scale! it said i was like 6lbs less than my scale does..Lol). i told her about my joints and sometimes some things i can't do (one machine in particular) and how theyd affect their new pc system. if i decide i cant do it, we can take it out of my rotation for a few wks..
the problem is its not a weekly basis, its a day to day, minute to minute basis. so..we'll see. i really dont like the machine anyway (absolutely least favorite) so maybe i'll just nix it entirely.

haha when it came to stretching after, she went over the lil board of stretches they recommend. and half of them didnt feel like it did anything whatsoever. "how the hell is this a stretch?!" lol she looked at me like i was nuts.
also when i fully reached around my feet..Lol my hamstrings feel soo tight to me, i feel like i should be able to stretch so much more. i keep tryin to remind myself what the PT lady told me.

Its been 2 or so yrs since i worked out at curves and i never did follow their suggestions. lol i just did what felt good to me... i just need to be careful and not over stretch. its hard cuz stretching feels SOO good. but i wont know if its too much till either i go to stand up and things feel "off" or loss and like something ain't right..or i get sharp stabby pains or the next day when suddenly random joints hurt and are waaayyy oober tight.

i remembered my PT lady told me that i should actually stretch my hip flexors cuz they were weak and such. so i did the stretches she told me to. (the ONLY stretches she told me to...)

im not a contortionist by any means but apparently i do stretch more than ur average chick. i never can tell unless im directly comparing though. just feels...normal for me.

increasing issues with my right shoulder. only in certian positions though that enable it to fully relax. (driving, reaching for the pc mouse, etc) seriously feels like it'll dislocate..and i can feel in there how structually its movin in a weird position. and it hurts. but then i move it and its ok. maybe a lil tender if i do it too much in a day..

i wanna goto curves again after clinicals tomorrow. i like my new workout clothes i got last yr when i joined 24 hr fitness. i dunno what it is but with the old ones i had i felt...ooooober frumpy. and some how that influced me. and i didnt wanna workout lol. my new ones are more form fitting and i dunno, comfortable.

i told the lady my motivation is for my health this time. a meager attempt to keep my joints in place.
but i still had to do wt loss goals. so technically i have a 28lb wt loss goal..i highly doubt ill get there. i dont recall ever being less than 180.. ive been between 180 and 200 since i was 11 yrs old. (all time highest was 211 tho in 2002... i worked my ass off tho and it slowly came off.. then i got back up to 203 when i broke my foot and spent 6 months on crutches.. but..naturally w/ movin at work and crap and walkin, it went down to about 190-195)
everytime ive worked out b4, i get close to 180 and i injure myself somehow (not working out related) and have to take time off. (back strain, breaking foot, straining ligament in my knee needing a knee immobilizer etc..) tho this time im startin at 188..so we'll see how it goes.

im hoping by having my main motivaters be my joints/health/prevent an increase of pain (that has steadily gotten worse over the last 2 yrs).. i'll be more apt to stick with it.

i dont want to be my parents.
and if i end up like mom when im 55.. well, at least i know i TRIED to do something to help. and.. muscle tone/less fat is always good anyway...

im not weak. curves lady said i was pretty musclular. and i know i have big bones. but i need the RIGHT muscles to be strong too..

Oh and im gunnna try to do my PT stuff when im stretching.. so stretch and lay on the floor doing physical therapy. might as well right? way comfier than my hardwood floors. and im already warmed up lol and... that way im workin special muscles too, them little ones of mine that ARE weak so my hamstrings wont be so overworked..

im tired.
2 more wks of school till 2 wks of spring break.. yippy!

schools in motion again..

2009-02-02T02:24:00.000-08:00

Well, apparently when you show up to class in a wrist brace and limping fairly badly... people like to ask questions. And I am at a loss for what to say.

I do not want to bring attention to being gimpy or having problems. So i played both issues off and basically was a vague as i possibly could be without being rude.I got a few weird looks. Ppl were obviously wanting some kind of story to go along with my wrist brace and gimpyness...
But how do you explain without saying you have a weird genetic condition, that

"Oh that? sometimes my joints do that. I have NO clue what I did, but somehow I sprained my wrist fairly badly...its been painful for 4 weeks now.. only slightly better now that's its immobilized and I got a proper brace. And my ankle? Oh i was at a restaurant and silly me! I thought I could take a step onto my left foot..ha! what was i thinking?!"

How am i suppose to explain that... without saying "Oh yea, so my ligaments hate me and sometimes my joints do weird things.. so crap hurts relatively often, but its no biggie, i can still do my job....most of the time."

I HAVE to be fine for nursing. It is too physical not to be. I gotta pretend I'm fine and dandy, simple as that. Once i'm a nurse, it doesn't matter as much.. then I can take sick days if I have to. And if i find myself in way worse shape, I can take a job thats far less physical than floor nursing. Lots of options out there.
Have to be able to get my licence and prove I can take care of my patients first tho. Year and 1/2 to go..

Least my body somewhat cooperated and the majority of my gimp-ness was on break. when I couldn't bear any weight on the back of my foot (heel-area) for a week and 1/2 before school started... and the 4 weeks of the wrist brace prior to school starting (only 2-3 more weeks of school wearing the brace) ... Oh and the hip SI joint tweaking thing it likes to do after car rides lol thankfully that was only 3-4 days. hottub helped greatly with that...

The MAJORITY of it was when i was on break. That was the deal I made with my body. it can break down on break, just not when i have clinicals.

my wrist isnt all better. and i PROLLY should be wearing the brace the 5 other days I'm not in clinicals. it still hurts decently bad but for the most part i can lift things.

trick is i gotta keep myself busy enough so i dont have time to think about things right? right. ignore knees, hips, wrists and ankles. check.

i still need to exercise. i dont want to spend the money but im really thinking of Curves again.. it was nice. minus the stretchy machine in the middle that did more harm than good..(but oh how good it feels at the time..hah)

i wish they had a 24 hr fitness here. i had so many more options when different joints decided to flip out.. knee all funky feeling and slipping? go do something else. hip spazzing out? do something else. lol im worse off than i was when i did curves before but i think itd still work for me alright.
I'd like to know medically exactly what happens when each of my joints do their thing.. I know i don't dislocate fully but.. I wanna know what the sensation/discomfort/pain is. I wanna know exactly what causes each one.

i wish my lungs didnt throw a big fit when i try to exercise outside. damn asthma.

I wish i had a friend here. I'm use to being alone but the total isolation...gets to me sometimes. Its hard when its not my choice. though if i had the same people around.. i probably would spend about the same amount of time alone anyway to be honest. i just like to think i wouldn't.

i should sleep. gotta study my ass off tomorrow.. test on the cardiac system on Tuesday I am ill-prepared for.

eds and my hips

2008-12-29T07:49:00.000-08:00

I was able to go back home a few weeks which was great though after the 4 hr car ride (i disobeyed by last physical therapist and only got out the car once b/c the other rest stop i was gunna goto was closed.. she told me i should get up every hour of sitting in the car so my hips and SI joint don't screw up...)

well, after i was home for a few hours.. my LEFT SI joint was really really hurting which is the first time that joint has caused me trouble..
which makes me really nervous.
ever since i fell on the ice a few yrs ago, its been my right SI joint. I get the sharp stabby pain (sciatic nerve issues) on both sides but the dull ach like pain leading into intense muscle spasms in my back...only on the right.
so now im not happy cuz what happens if it happens on both at the same time?

so.. im headed back home this week. i spent the last 2 weeks snowed in under a foot and 1/.2 of now....missed christmas which sucked..but as my friend bev pointed out, its good thing its a season and not just a day =)
so i managed to not fall so far! *knock on wood* but my left wrist has been really sore.. unknown reasons. im assuming some kind of sprain? dont recall doing anything to it but thats nothing new with me.. hurts on both sides of it.
i was wearin an ace bandage awhile and that seemed to sorta help. its not *as* bad. but i couldnt carry my groceries at all with that hand yesterday. so i spose i still need to baby it.
hoping once school starts next wk it calms down moreso even. thnakfully its the left and not the right.

kinda nervous about the drive home and more potiental SI pain.. but the lady im staying with has a hottub that really helped last time. =)

I got an A- my first quarter of nursing school...
just a year and 1/2 to go!

2008-10-14T23:25:00.000-07:00

so i moved 4 hrs from home away from everyone i know.. and started nursing school!
sitting in a class sucks, not working sucks too.. house is nice, propety is great, view is fantastic... landlord is ticking me the hell off! first he was around all the time, very annoyng..and now still things need to be done, and he cant be found?! grrr...

i need to MOVE. like exercise..badly.. i signed on at the school last wk to be able to use the gym. then my excuse was no laundry, needed to wash workout clothes..so i finally did that today (laundry mat since landlord hasnt put my stupid w/d in despite lots of promises!)

so no more excuses.

hips have been bothering me...not totally w/ pain but w/ the same issues that brought me into PT to begin with. i had to do a 'health and wellness" goal deal for school so im commited to do my PT stuff now.. i hate that i can make my hip flexors cramp up and my hip feel like its moving around just by shifting my leg a certain way...

i found it interesting when the physical therapist said i wasnt tight at all.. like, i always feel like my hamstrings are amazingly tight.. and she said my "tight" is more than most ppls normal.. weird.

i just read a blog about eds..and she talked about normalicy and not realizing its different or ur different at all...

class keeps talking about physical activity levels and such and if ur family was active and walking and doing stuff, then ur more apt to not hate exercising...

my moms hips subluxate half the time she walks.. her feet are totally jacked up w/ dislocations/sublux's and nerve pain.. among everything else. a trip to the store wears both my parents out.. for like, a week minimum...

i didnt know this wasnt normal till i dated my ex... his folks were active, skiiers, walkers, runners etc.. and it amazed me to see ppl my parents age, doing all this stuff.. it was damn near dumb founding to me.

i didnt know hip issues/shoulder issues/an amazing amount of sprains/twists, weird complications from surgeries (stiches "undoing" themselves internallly) etc.. i didnt knwo it wasnt normal. well i knew some might be considered a lil weird, but i just chalked it up to us. I thought me and mom were just clutzy and accident prone...

till last yr when we found out we have EDS.. and our weirdness has a name. and damn near every single one of our "oddities" isnt particularly odd in that group of people.. amazing.

even more so.. we're doing pretty damn good compared to some! my sister is very "woe is me.." and thinks her life is horrible and she got the short end of the stick.. but compared to some out there, shes doing fantastic...
shed be doing a lot better if she didnt focus on it all the damn time and did something to help try to prevent things from gettin worse perhaps...

things in the nursing program bother me.. they talk about normals and they talk about how ppl should be.... well ya know what..in reality, that ISNT how things always are damnit. it irks me... always has.

i dont want to mention EDS or talk about it much except i still find it facinating and i want to educate.. but i do not want to sound like "oh yea im special or weird"...i dont want focus to be on me, i want it to be on education of EDS and complications tey might encounter w/ pts like us..

and im not.. a wonderful example show-and-tell wise. b/c a lot my stuff is sorta..internal? im more flexible but not amazingly so.. but i can pop my hip out at will, Ohh
another thing lately
my damn shoulder..
its been getting tweaked wrong and then i try to move it and it HURTS and POPS really loud and it feels like things are shifiing WAY too much in there...
iv never had my shoulders checked out...interested to compare to someone without hypermobility to get a feel for what it should be doing and what i shouldnt....

oof i need to goto sleep... sleepy.. enough ramblings tonight.

stupid hip

2008-07-05T11:17:00.000-07:00

i've been really lazy this week..and my left hip is complaining of the lack of activity i think. its kind of annoying.. if i do TOO much, a lot of stuff hurts...but if i don't do enough, a lot of stuff hurts too. lol

usually its my right hip that bothers me (probably b/c thats the one i hurt like 4-5 yrs ago falling down the steps...and b/c my left foot hurts since i broke it a yr and 1/2 ago so i tend to favor that side and overuse my right side..). but yea, so left hip hurts. i want to go back to sleep but laying in bed ain't feeling so hot. it feels like its both in the hip joint/socket itself and my SI joint on that side. hmph.

Ive been especially lazy b/c i have a nurse friend staying here w/ me for a week. so i didn't want to work extra bc i kinda feel weird having someone at my house. i've been living by myself for 3 yrs..im not use to this.
I also REALLY need to wash clothes and my workout clothes are included in this.. so yea.. hmph. been really lazy. gotta change that this week.

i just ate some cereal and took a couple advil. i gotta go back to sleep b4 work tonight. i was crazy tired (slept 3hrs) yesterday so i accidentally passed out at night.. and i gotta work all night tonight. so thats gunna goof me up. esp w/ my stupid hip hurting... grrr..

alright im gunna try to sleep again. lets hope that advil kicks in.

random sharp stabbys...

2008-06-16T03:47:00.000-07:00

well i did PT for awhile and she helped me out a bit i think.. and when i started slacking on the stuff, i notice my hip flexors doin what they shoudnt etc..
i also managed a car ride, 4 hrs...on the way back i think i only stopped once and the only rebounding SI pain i had was just kinda twinges and annoyance pain for a couple days. not bad!

my knee today has been hurtin.. but only when i sit a certain way. its annoying more than anything but i hope it doesnt keep up cuz i have work the next 3 nights and id rather do it w/ just my normal foot pain than knee and foot.. i think it must just be kinda shifting wrong or something?

coccyx feels bruised/painful but i didnt do anything to it.. so thats kinda new. hope it goes away.

im gunna miss my 24hr fitness membership when i move. they apparently dont have one in town.. so i gotta cancel it. tho im gunna try to use my gym at the school for cheap/free..

i was working out the other night and usually i start on the bike but i couldnt cuz my knees were doin weird things (PT lady said its caused by my patella sliding over to the side way more than it should ever go as i extend sometimes.. ) so i did the treadmill for 20min instead till my foot and hip were bugging me.. then i did the weights a bit and got back on the bike and my knees were trackin right the 2nd try! yay!

my mom understands what i mean when i explain things like that..why smetimes i can use one machine and other times i can't.. i stopped tryin to explain it to most ppl cuz they look at me like im weird. good thing i workout by myself anyway..

i got my 2nd pair of orthotics too! yay! so i can wear my 'nurses shoes' with everyday clothes now cuz the inserts are thinner so they fit in those shoes. =) not as cushy soft as my other ones i wear for work but.. way better than w/out!
damn neuroma.

okie im gunna goto sleep.. ugh. i dont wanna goto work.

Physical Therapy...sounds promising

2008-04-10T13:11:00.000-07:00

PT went well. she said she realllly didn't like the laxity in my knees. she is surprised i don’t have more pain. she was wiggling my knee cap around and twisting and bending my knees and was like ’woa..so that doesn’t hurt?" lol also explained the weird not quite pain feeling i get when i do certain things (in a pool..or sittin down..lift thgh up and straighten my knee.. its a weird...tickle/feeling almost under my knee cap)...apparently when i straighten my knee, my knee cap gets pulled out to the outer side instead of verticle.

she also said my weird cramping sorta feeling i get in my hips is super weak hip flexors. and that my hamstrings aren’t really ’tight" but that they are just severely overworked. cuz they are tryin to hold things in place and work for other muscles...like my hip flexors. and gluts.

Basically... I have all-over flexibility/laxity in all my joints. (surprise! ;) so my muscles have ’adapted" to try to hold things together/in place. she was comparing the differences of how she’ll treat me VS a normal person. no stretching exercises. I stretch too much as it is. working on strength instead. and cuz damn near everything i do that flexes or uses the hip flexors.. causes bad bad bad cramping in my hip socket.. shes starting me out crazy slow and basic. apparently next wk I getta hop in the pool. (hey least this time i’ll be able to walk in!! last time i had to sit on the damn chair and be dropped in Lol stupid foot)

she gave me 4 things to do. all very basic. and very easy. have to do em at least once a day.

she said my quadriceps and hamstrings are both pretty strong. i need to work on: not using my hamstrings for damn near everything (..she had me do this thing where i was suppose to default back to using my quads...but my hamstrings kicked into gear instead and she was all "huh thats odd cuz ur hamstrings shouldn't even be working in this position!" lol
-when i get the right muscles firing and the hamstrings to calm down...things should be easier. like walking/standing/stairs etc. and getting my knee not to pull to the side should make stairs a lot more comfortable..

and i need to get my hipflexors working properly.

those 2 first steps will lead to helping me a lot in the long run. and getting everything else working properly. gotta develop the muscle tone in all the right spots...cuz right now its in all the wrong spots!

so that was pretty interesting =)

she said shes never treated EDS before but she does have a marfans patient right now.. (which is another pretty similar connective tissue disorder with hypermobility).

im amused by peoples reactions to how lax things are. it is quite amazing i don’t have more pain. I’m just worried about as i get older the pain gets worse. like mom...as theres more wear and tear on my joints. and things get even more lax. cuz I have significantly more pain now than i did 5 yrs ago. hence..PT NOW! and getting in shape NOW.

when i mentioned all my ligament related injuries..she was like "woa..but ur just kinda use to it eh?" "yup pretty much. which is why i never thought much of it before. been hurting myself once a yr at least almost since i was in 4th grade. i just figured i was a clutz"

I told her about my foot and how i know thats impacted things over the last yr and 1/2 in my hips and how things work. and how when my foot hurts it flares up my hip..

she said why sitting in one position too long (over an hr) causes SI joint problems.. is that "normal" peoples ligaments stretch and relax after so many minutes in one position. but mine probably stretch two or three times asmuch as the average person. so when i go to stand up, things are imbalanced moreso than they usually are and that tweaks muscles and joints and things hurt. which is why i move around a lot/change positions/shift. she said its probably an unconscious thing.. iv been like this my whole life so i always shift around subtly to prevent things from settling too much and being too stretched out and causing disturbances. hense in a normal chair.. im okay cuz i move around but in the car ride.. no where to go so i stay in the same spot...hence the increase in pain and problems and all my SI joint/muscle spasms i was having last month.

she said i shouldn't do the gym until we get me straightened out or im setting myself up for injury based on how i’m presently put together...

overall i think she was pretty cool...I want to goto the gym though and she told me i'm not in a good spot to goto the gym right now. Not for awhile till she works on making things work right.. BUT I WANNA GO! and I'm payin for it.. so I don't know what I should do or could do that won't hurt the progress i'll hopefully be seeing w/ her....maybe i'll ask when I see her on Wednesday. i wanna do cardio stuff.

I also had an appt with my orthotic guy. who laughed and has never seen an orthotic be so torn apart and worn down as mine were in a mere 3 months. lol he literally laughed every time he glanced down at them. So he glued it back together AND said hes making me a whole new ones!! So i will have two pairs!!! YAY!!!!!!!!!!!!!!!!!!!!! *happy dance* I also am going to check out Jays Wide Shoes and When the shoe fits to find decent looking casual shoes that'll accommodate my size 10s and super super wide feet w/ my big ol cushy orthotics. He recomendedboth places. the When the Shoe fits place is where I got my tennis shoes (easy balance) when I was getting back on my feet last year.. only place to have good shoes that i could wear that helped me relearn how to walk.

muscle relaxants and a hip massage

2008-03-30T09:34:00.000-07:00

so.. muscle relaxers seem nice at first, but i end up being in way more overall pain afterwards.. its like it relaxes the muscles that are holding things in place and then things don't stay where they should and i get this rebound effect of pain, and usually not even in the joint that i'm taking the muscle relaxers for! its...frusterating. I hate narcotics.. they make me feel horrible. but i'm not liking the muscle relaxers too much either. So far i haven't found anything good to take when dealing w/ the EDS issues.

I crashed at my friends house the other day and i woke up hurting..with that hip laxity again and uncomforableness. He ended up offering a low back massage and found this spot that hurt but felt good..and he found all these crazy tight muscles in my hip/very low back/near butt area that HURT and were amazingly tight.. after a good hour+ massage in that area..he worked out the muscles and wow it has felt good ever since. wonder if its gotta do w/ the "tight muscles-holding joints" problem.. like w/ my super tight hamstrings and loose hips.. cause its all interconnected and stuff.

one more week till PT.. yay.

it seems to come in waves..sometimes i'm hurting more than other times too. like sometimes things are looser.

Havent been making it to the gym this week =( i want to i want to i want to! need to stop coming up w/ excuses.

its WAY past my bedtime but i slept like 12hrs...till 2am hah. woops. now its almost 10am and I have to leave for work at 6pm. shoot! still not very tired.. just munchy. ate like 3 pickles lol. aw well. must force myself to sleep.

Also need to figure out insurance companies for when i move this fall for school...if i'll go through the school or state or what I'm going to do.. I have to have medical insurance. I can't go without. so i guess we'll see. my income is going to go wayyy down when I'm in school so I think i'll qualify better for state stuff than I do right now. I'm afraid to go even a day w/out medical benefits!

okay time to try to sleep..

my hips hurt when I try to sleep..

2008-03-26T11:21:00.000-07:00

I'm new to this EDS-weird-things-i-do-having a name thing.. Sometimes when I'm trying to sleep, laying in bed is uncomfortable. My new squishy bed, i get this way less frequently but its a strange pressure/feeling on my hips in almost any position. Like if i stay there for more than a min as i'm trying to relax, my hip sockets aren't....how they should be. Like the pressure is directed on the socket and its moving too much or tryin to shift out of place. Its not really a PAIN thing but more of a uncomfortable thing..it'll turn into pain if i stay put though I can't usually tolerate it and I have to get up and move around.
Its annoying. and i never knew what it was until It happened again today and I was thinkin about how I could describe it and why its doing that...

Its nice to have something to blame for some of my oddities =) I never knew why I was such a clutz..or why I always hurt myself WAY more than any of my friends...now I do!

Apparently there was a misunderstanding about my physical therapy appointment.. its not until April 8th! dangit.

I was doing what I shouldn't do at work heh... i mentioned going to PT in the morning (I work nights at a hospital) and she asked why and I explained about EDS and my hip problems and she was intrigued so I elaborated a bit. "So your like...double jointed?" "Sorta yes.. but its a little different." and I told her about the muscle differences...showed her the back of my hamstrings..which are WAYYY too tight (it kinda juts out if u feel for it) I proceeded to show her the trick my hip does.. I didn't know it wasn't normal until a few months back when I showed my best friend and she freaked out heh. Its easier to do laying down but Ive found I can do it standing or sitting too.. but its kinda like i'm moving my hip in the socket to a position it shouldn't be and it juts the femur out a bit and u can feel this.. movement/jerk in the hip as things move. So i was all "here, put ur hand right here..." and then i moved my foot just slightly and it did it and she was all "WOA! what the heck?!" LOL! I know its bad..and i KNOW i shouldn't do it..cuz it puts more strain on the hip joint itself and I have enough laxity in there... but the reaction was amusing.
I didn't know not everyone did this.. I use to think it was just something everyones hip did. Apparently not.. I've shown it to a few ppl since, just to see if it IS an EDS thing or my hip thing..and no one else can figure out how I do it.

I also decided I wanna talk to the PT about my shoulder... just to see if its more lax than most too. Its never dislocated but I have super tight muscles in my shoulders (lots of muscle knots and "tension"- ALWAYS have) and i'm wondering now if maybe its like it is with my hamstrings... super tight to hold things in place. cuz i can do more things w/ my shoulders now that I'm more aware of everything.. it feels like i can put it in a certain position and it almost goes outta joint..like it moves too much and if i stressed it anymore, it'll start to hurt and could dislocate.

I'm still learning things about my body and tryin to be more in tune and more aware of everything.. and seeing how much of it all I can attribute to EDS.. my manifestations of it arent too severe...but what scares me is looking at my mom.. shes 54 yrs old and shes in bad shape.. and i asked her recently if she had the kind of problems I do now when she was my age and she said she didn't..she'd say I'm in worse shape ligament wise than she was...
so that scares me a lot....
and i've read about people taking a turn when they turn 30 (mom said she was 30 when most of her oddites really caught up w/ her and started causing problems) ...so.. I don't know. I just want to be more aware of everything and KNOW what my body is doing and be able to prevent stuff best I can and deal with it as it happens.

and never go a day without medical insurance....

I have EDS... oddities explained!

2008-03-22T01:00:00.000-07:00

Hi =)

I have EDS type 3.. for years i was told I just simply had "loose ligaments" in my feet and hips and SI joint where i'd have recurring problems. or last year that I was just "slow to heal" when I broke my foot..and i spent 6 months on crutches for a break that didn't even show up on Xrays..

mom searched for help when i was a baby..I didn't walk until i was 17 months old. She describes it that whenever she would put me on my feet, I'd curl them up and cry and scream like I was in pain...

I still had 4 baby teeth when I was 15yrs old. The only thing that got the baby teeth outta my mouth was my sister when she decided i'd be her new project (i think she just liked causing me pain).

I have what I have for years referred to as "See-through skin!" While I don't have type 4... I think this is a crossover trait for me? Not only on my chest and upper arms and feet but U can trace all the veins in the palm of my hand from my forearm, thru my wrist, up my palm and to my fingertips.

I'm not sure if I'm considered to have soft velvety skin..except that for years, numerous people have told me "WOW ur skin is soft!! u must use a lot of lotion!" - ....I almost NEVER use lotion. and esp on my arms and stuff. lol

I bruise easy. Not as bad as some but i go through spurts where its almost like i break out in bruises...having no recollection of where i got them. one time i counted 6-8 bruises on each extemity at one time.

I am hypermobile. fingers, toes, according to the PT i saw a few yrs ago, they said my hips and SI joints were" very loose" but that my low back and hamstrings were abnormally tight... b/c they were tryin to over compensate for the loose ligaments. Also in my feet. spent i think about 4 or 5 months in my walking boot..and the physical therapist i saw throughout the whole time, was amazed that i had no "range of motion" issues after bein immobilized for so long. she also commented that I had "loose ligaments" in my feet. I know my shoulders are too..and my wrists. I use to get a lot of sprained ankles and wrists but luckily I havnt had those injuries for awhile. either my ankles are more durable than they use to be, or im just more careful.

i have sciatic nerve pain from my SI joints and lately i was laid up for a couple wks b/c that joint was loose, moving around too much and causing intense muscle spasms in my back.

for as long as i can remember..any sudden movement like jumping or even just when i'm walking... i'll get random SHARP pains in my feet that make me stop in my tracks.. wiggle my foot, and try the step again. my mom gets it (she has EDS as well) but no one else i've ever described it to had any idea what i was talking about.. i'm thinkin now maybe one of those little bones in my feet move around sometimes and subluxate as i walk?

I get the same/similar pain in my hands sometimes.

doctor didnt really believe me as to how i broke my foot... I was walking. barefoot. and i kinda tripped on my own foot.. it LITERALLY bent itself in half down the center, then my ankle turned bad.

I am a total clutz, i run into stuff and I fall down a lot.

I average 1-2 ligament/tendon-related injury a year. not too bad, pretty manageable actually.. Have ever since... probably 3rd grade. Theres a reason why my friends call me "gimpy" and "hop-along" lol =)

I almost always hurt myself doing normal every day things.. like walking.

I own my own set of crutches, multiple ace bandages, a knee immobilizer, a walking boot etc etc.

I never ever would have considered that I actually had a syndrome or condition to explain my little oddities... i figured i was just a clutz and chalked it all up to that.

Then I worked with a nurse who has EDS, she told me about her daughter..and in our conversation, she said some of my weird medical family history stuff sounded an awful lot like hers.. so she wrote the name down and i promptly forgot. till 2 wks later when i broke my foot and i was laid up.. so i found the little sticky note and OH MY GOSH.. it was amazing. everything was explained (mostly with weird stuff thats happend with my mom.. no one has ever been able to explain..until now!). We then got properly diagnosed and here we are...

My present goal is to try PT again.. and get my hips and SI joint to stay where they should. going to the PT lady on Tuesday...*crosses fingers*

i also joined a real gym..so i want to try to get in better shape. develop the muscle tone to help stablaize things better.. but i want the PT's help to do things the right way..assuming i get a decent one. I wanna print info about EDS for them too.. so they know why/how we are different..
should be interesting!