two unusually productive days...and now back to the usual.

You know those rare strange really "good!" days with EDS? They also happen with narcolepsy.. and the last 2 days, i was pretty productive! I cleaned stuff, organized stuff, put crap away that had been taunting me for weeks to months.. I washed laundry and managed to put everything away! I busted out my sewing machine for the first time in FOREVER and sewed up a bunch of wholes in the kiddos pants, fixed T's pants! (tho he thinks having a reinforced area on his pocket is a lil weird but he likes it... and now he wants me to put random useless patches on the rest of his pants cuz "worn pants like that are cool!" ...*rolls eyes* and i made some applique patches for the kiddos pants and she wants more.. the problem?

I couldn't wake up today. The last 2 days I took my instant adderall and woke up early (for me), with about 8-9 hrs of sleep only. I felt okay once it kicked in, and then when it started wearing off, I took another dose. (my insurance won't approve the XR anymore so my doc wrote for a TON of regular adderall, spose to take 1-2 tabs up to 3 times a day). But I really didnt want more dry mouth issues, and I wanted my little break from it.. lord knows why except the adderall KILLS my libido and gives me horrible dry mouth. - and to top it off, physically everything is all outta wack. HUGE knots over my SI joints, arthritis in my hands is extra bad, and it took me awhile to be able to snap crap back to safely walk to the bathroom this morning.

So much for a good spree.. guess i should be thankful those days come at all tho yes?

So far today? I ate dinner (i cooked 4 meals the last 2 days) T made, and laid on the couch. I did read the kiddo a bedtime story and then realized it was too late to goto the craft store (that ive been needing/wanting to do the last 3 days). I took an unintentional nap, had a dream about sleeping (can't I at least stay awake in my own dreams!?) and anaphalatic shock lol and took a muscle relaxer, 2 doses of advil and an aleve..

hmph. if only i didn't have so much to still do!

Oh well.. I'm gunna lay back down, with all my pillows, and try to stay awake through a movie or tv show. and rest up my joints cuz i have work the next 2 nights. oof.

Doctor shopping time..

So.. I gotta admit, I got my new/old iron supplements, found em at the Super Supplement place, and the extra-bad fatigue is a lot better. =) yay for iron and vit B! (and everything else in them.. I'm also not getting the bad "burping-taste-of-vit B" that i got before when I took them for some reason *knock on wood*).

So.. I need to find a doctor. I just found the info pages online about all the docs and whos accepting patients and stuff that my insurance will cover.

I apparently get to pick between a General Family Practice doc, which is whom I've always had in the past... or an Internal Medicine primary care doc. I've never seen one of those.. any suggestions? Esp as I'm having to deal with more and more EDS-related stuff, I'm not sure which kind of doc I should shoot for. Though I suppose one of the Rheummy's at some point may be a good idea?


Oh yeah.. dunno whats up with this, but ive had this dizziness accompanied by a headache and borderline nausea due to the dizziness off and on the last few weeks. First time it lasted about 4 days, then finally went away. and its been back now for the last day or so. Started when I was working last night. No idea whats up with it but I don't like it at all. Almost a motion-sickness thing but its not strong enough to make me fall down or anything, its just.. obnoxious and makes me overall really not feel well, nor feel like doing much. Now that i'm typing this, I'm wondering if it could be a TMJ thing? I have intermit jaw issues, and lately its been buggin me a lil more than usual.. hm..

Oh!
So after telling mom about dysautonomia, she talked to ehr doctor about it.. and while he didn't use that term, he basically chalked half her issues up to it and said it makes since with EDS (apparently he has been doing his homework). Shes got the tachycardia crap (worse than I do), severe-at-times-vertigo, GI issues, (had a barium swallow a lil while ago), etc etc. He also told her there isn't anything to do about it and she is going to just have to deal...

anyhoo, i should get some sleep. I was planning on going to bed early today so i could be kinda productive during the day tomorrow.. aw well. hope everyone else is doing okay!

woa its been awhile..

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

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...

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...

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...

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!