Friday, June 24, 2011

F*&% yeah!!!!!

I RAN!!!!!

Well, jogged, technically. But for 5 minutes, on the road, hills and bumps and all!!!

I've been working out using NikeTrainingCenter app for a few weeks now. I have to modify a lot or do fewer reps or slow the heck down, but I've been working my ass off to try to make a point of working out for 30-45 minutes three times a week. And I've been doing good. Even if there are days I can't walk afterward (I only workout on my days off...because if I do it before work and injure myself, I'm screwed, and I'm too tired to do it after work - a 14 hour day on my feet is workout enough).

So the two workouts I've been doing the most with NTC are great. And one involves a 5 minute warm up that involves 3 different kinds of runs: a light jog, a high knee run, and a slide and glide (running sideways). I only workout in my living room, so there's not a lot of room to run, so when I do the jogs, there's a stop every 5-7 seconds to turn around and go back. Which isn't as good as just a full jog without interruptions. So two minutes into my workout, I decided to nix it today and see if I could actually jog (I'd been doing well with the jogging portion of the warm up, however halted it might have been, so I was feeling confident). I strapped the ipod to my arm, turned on my workout mix, and out the front door I went. I made it to the end of the street, turned around in the adjoining street's cul-de-sac, and came back. It was a five minute jog, in which everything hurt and my lungs burned as I did hills and uneven pavement (and shit, just pavement in general!). And it felt awesome!

I haven't run in so long!!! I was never a big fan of running, but I like the way a workout makes me feel. And it's not like I knew I would die if I did run (there are the rare occasions we run at work to keep disaster from happening - like people falling), but I knew it would hurt, I wasn't entirely sure what would damage first, and I was just scared because I haven't attempted running in a LONG time.

I'm pretty proud of myself. After that, I came back in and did the core part of my workout (all on the floor, which my hips protested after running). I didn't earn a new badge in NTC like I was supposed to today since I stopped my first workout at 4 minutes, but it was worth it. This is a much cooler feeling!

And now, as I'm going to see people later, I must shower, because I smell absolutely gross!


Oh, EDS sidenote: I FINALLY had my skin punch biopsy a couple days ago. I'm thrilled that we finally got it done. There's a very good chance it will show nothing significant in the way of genetics (I've done the research, I know what goes we all do :P ), but it'll at least show my collagen structure. And if nothing else, we still needed this to prove that I'd done all the work to get the proper diagnosis. As far as two rheumatologists and a geneticist are concerned, I have enough signs and symptoms to show a positive clinical diagnosis. Which is what most folks get anyway. But this way, with the final step out of the way, we can start finding me PT/OT somewhere to get me the right exercise to stay healthy and the right supports/splints/braces to maintain the integrity of my joints. My new rheumatologist is excited to help me find whoever this person may be, but we're both certain there isn't such a PT/OT in the network my insurance is under, so we know there will be some searching and research involved (if a network can't provide what you need within their system, they are required to cover you out of the system, but that will mean more paperwork and drama to convince them that I can't see just any old PT and call it good). So, I'm excited.
My arm is a bit confused as to why there's a hole in it. It mostly itches, but there was definitely a nerve interrupted in the biopsy because I have pain several inches in a line up my arm. So, hopefully that will heal soon. Though I'm paranoid about having an open wound like this and working in a hospital. MRSA everywhere, and I certainly don't need it in my arm! So I'll be covering it with watertight tegaderms at work (and maybe even skin sleeves to protect the whole area a little more) and then letting it get some air on my days off.

Anywho, there's my excitement for the week. Now I really do need to shower, because Glee afternoon with the girls will be in a couple hours. And I ain't going to be the one stinkin everyone out of there ;P

Wednesday, June 22, 2011

I fail, whatever

So I gave up on my month long posting spree very early on. I realized there was nothing that interesting to post about every single day.

But we'll hit some highlights.

My knee is healing well. My superawesomesupportive knee brace is not. After wearing it 18 hours a day for 6 weeks, it's dying. The arm of one of the hinges has torn through the sleeve it resides in, making it less effective when I bend my knee. I managed to patch it back togeher with cloth tape at work, and that's holding fairly well (that shit is tough!), but I'm going to need a new one soon.
I'm hoping that's something I can get paid for if I ever start PT/OT.....sheesh.

Also dislocated my thumb badly last week. I was cowboying through it at work, but it hurt so bad. I realized later on that I must have pinched a nerve when I did it. At any rate, I wore the thumb imobilizer for several days to let the poor thumb rest. But that's not one I can wear at work, so I really want to get silver ring thumb splints...those would be doable at work.

Met my baby nephew and he is the sweetest baby ever. Seriously. I love him so much and I can't wait to go back to see him and snuggle him again. He's awesome. So are my bro and his girlfriend....they've really taken to parenting like pros. You wouldn't know that this was their first one if you saw them witht he little guy. Which is just way too awesome.

I went to the ED yesterday halfway through work. I had a hormone headache that would not leave me alone and despite my best efforts to power through it, it was giving me visual disturbances that I couldn't ignore. So I left my floor halfway through the day to spend the remainder of my day in the ED (they were PACKED). Talking to the nurse and NP about treatment was tough because most EDs won't give out narcs until they have your history and whatnot (weed out drug-seeking behavior). And I wasn't really there for narcs anyway. But I had to let the professionals throw their ideas at me first. They suggested Zofran (which I took anyway because the nausea wasn't horrible....Zofran's useless for the big game though) and Tramadol. I said no to the pain med because it never works for me (for anything, they also tried to give it to me for my knee and it did absolutely nothing). They asked if narcotics worked. I said that I was foggy but I knew that morphine was a no-no (it hinders that breathing thing that I've gotten so used to) and that last time I was in the hospital with a migraine, I was given Demerol shots. They didn't like that idea, I could tell. So I threw something else out there. I told them that frequently for me, the first plan of attack is bolusing in as much fluid as I can handle and IV Benadryl. The NP said she had never heard of that, but I could tell she liked the idea better than giving me narcs, so she was willing to give it a try. I told her it's a triple threat for migraines: it's been shown to suppress the CNS, which is a good thing during a migraine, it helps combat nausea, and it knocks you out, and sleep is the best thing for a migraine. So they gave it and let me sleep for over an hour while I got fluids. I felt better when I woke up. Still had a twinge, but then I was headed home to take Lyrica and Klonopin for bed anyway, so I wasn't worried. Just more sleep. I sat up and ate a little snack and walked around for a bit to make sure the Benadryl wasn't dragging me down, then headed home.

I'm feeling much better this morning and I am scheduled for my skin punch biopsy for molecular testing at the geneticists office today. Even though most docs would agree that clinically I show very clear signs of EDS, they still want to do the genetic study to see if there's anything else they can glean from it. And my rheumatologist said that will help with getting me into PT/OT somewhere, even if it's not in my own network of hospitals (they have to provide care for you anywhere if they can't provide it themselves, so having proof that we've done everything to show for it makes it easier to convince insurance they're going to have to cover me at one of the big expensive hospitals). My rheumy is on board with my ideas and really wants to help me find a PT/OT who specializes in these types of disorders so that I can get what I need. I really like her. And I'm going to have today's test results sent to her so we can speed up that process.

It's 0830 and I need to leave here by 0915, so I think I need to get up and get around to go.

I'll probably make a second post later about the geneticist visit.

Tuesday, June 7, 2011

Quick betime post

Got up and around today. Business, kids! Got up and worked out (no easy task with a puppy), did the dishes, made food, vaccuumed the floor, did 2 loads of laundry, showered....then sat on my ass the rest of the day.

Not too shabby.

Though I would kindly like to tell the reflux once again to please go the hell away!!! I've had fire in my throat and sticky mucus in my mouth all day. Reflux, I hate you.

That is all.

Still counts

It's very late, and technically the date has changed, but I'm still up and haven't headed to bed yet, so this counts as my post for the day. (to be honest, I did almost forget ;P )

Chatted with Meg off and on today. Love talking to her. She's incredible and we have so much in common. I'm just starting to think that maybe I can make and keep some friends around here. Makes the decision to move here suck a little less.

Talked to Rory tonight and that was a blast. We exchanged youtube clips back and forth for nearly 3 hours (talked in between, but you know). I love talking to that girl. Such a sweetheart.

Trying something new with Bently. Anytime he is being a pest now, instead of repeatedly trying to make him lay down or go away or putting him outside, we've started putting him in time-out in his kennel. About 10 minutes in there and he's changed his mind, that he doesn't want to bark in your ear or paw at you until you bleed. I know he's a puppy and he just wants to play, but he needs to learn some manners. He's so smart but he has the WORST manners ever. Sheesh.

Didn't do a whole lot today. Bummed around. Watched tv, read, wrote. Lazy day. Took a shower and put on a skirt because I was feeling girly (I don't know where this has come from lately but I like it :P ). And put my knee brace back on because bumming around the house is still enough to piss it's nowhere near healed yet.

By the time I was done being sucked into the internet it was getting late. And rather than make myself get up and workout in the morning (which I'm not as motivated to do), I did it tonight. 45 minutes, NikeTrainingCenter app on my phone. I have to modify a lot so that I don't end up with injuries, but it's still a good workout and feels great to actually BE working out. Because 12 hour shifts really don't do enough. It's a lot of walking and heavy lifting, but there's no organization to it. And then I just sit on my days off. So this is better. It gets a good workout in me a few times a week. It's refreshing.
And so weird. Because even though my ability to thermoregulate has minimized, I still do sweat some. But when I was on Topamax, I couldn't sweat. One of the rare-ish side effects is inhibiting sweat production (because of electrolyte imbalances caused by the drug). So I would overheat but never sweat it off. Now I sweat a little, and it's nothing compared to how I sweat when I was younger, but it is a good feeling. Feels healthier, and makes me feel like I accomplished something in the workout.

Okay, now that my body is coming down from the workout high, I'm tired. I need to hit the hay. More later! Much love!

Sunday, June 5, 2011

Sick day

My stomach never really let up after last night. Had mild IBS today. Couldn't get out of bed by the time I needed to for work. So I called out sick. Pretty sure I'm running out of absences fast. But, what can I do? I'm off again tomorrow so hopefully my gut will chill and be ready for work again.

I spent all day writing, clearing out my inbox, and chatting with a friend from work. Definitely the relaxing day I needed.

My knee is bothering me pretty bad again. I haven't worn my brace the last two days because I've just been sitting around anyway. But I sit all twisted up and contorting it and it gets mad again. So I need to wear my brace tomorrow even if I am just sitting around.

Yet again, another boring day, but that's necessary from time to time.

Saturday, June 4, 2011


Lazy day. Day off and dad is out for the day. House to myself. Wonderful.

Until just now. I had 2 oz of glucerna with lunch today. And it wasn't terrible. So I thought I'd go for two more just now. Apparently my stomach wasn't ready for the second act. I feel like I could barf. Not a great feeling.

Not a lot happening today. That might be it for me.

Friday, June 3, 2011

A quickie (and no, not that kind)

I really need to head to bed. But....

Slept in!!! The puppy was still asleep so I took full advantage!!! Went to talk to an advisor about school today. I was very glad to find out that not all of my sciences expired like I thought. I have until December to complete three classes with Bs or better (one of them is a non credit class, and only three sessions, but it's very necessary to pass an exam for med calc). And then I can apply for my program and finish taking all the "extras" until I get in and start my clinicals. I'm so excited!!!


Okay, so last night totally failed because my computer cord fried (literally) and I had to unplug it fast so that it wouldn't damage the rest of my already nutso computer. So I have a replacement cord (universal) now - which isn't magic, because the connection port is still shorted as well, so we still have some issues there. And I bought my netbook. I needed one for school (and travel) and this thing isn't so reliable anymore. So I'm sitting in front of two computer screens right now trying to catch up on stuff on one and load stuff on the other.

Which is why missing my post last night doesn't count. I started it, I just couldn't do anything after that :P


So today, TIRED. I started out sitting with an Alzheimer's patient who had fallen at the nursing home and had injuries that needed tending to. She was a HANDFUL! I couldn't be away from her for two seconds! Then our boss decided that there were too many high accuity patients so she staffed me up to the floor and we got a sitter to sit with my patient. Which meant I had to spend the rest of the day playing catch-up from where things couldn't get done before.
Finally going smoothly in the last hour of the shift (everyone was starting to catch their breath, and still run ragged). Then at shift change? A code blue!!! Folks, that's two code blues in one week on one unit, both at shift change! NUTS NUTS NUTS!!! I don't understand!
I got to observe more of this one than the last one though, and even got to jump in and take part (I was the first to note that the patient was diabetic and her sugar needed to be checked if she was status at the moment, so the sea parted long enough for me to get in there and do that). I was shaking once I stepped back. That's an intense place to be, in the middle of a code team with someone barely alive at your hands. But it was an interesting learning experience. (and believe me when I say, no matter how much I want to jump in and learn, I'm always sorry when it is at another human being's expense).

And now I'm sitting here catching up on stuff because my computer died last night and I had to go out today to get a replacement power cord to hold me over until I get a good computer.

Wednesday, June 1, 2011

Four floors in two days

Moving day yesterday split me between my home on 3E and my new temporary home on 1E. Then today I got floated. To 2E. And halfway through the shift, to 2W. That is a lot of learning curve in a very short amount of time. Nothing is in the same place on every floor (something I miss dearly about my old could be on ANY floor and you would know exactly where to look for everything you needed because every floor looked/was laid out the same. It was awesome!

But today wasn't terrible. Could have been worse. I kept up for the most part. (and my team leader even called me later in the day to ask how I was doing and see if I needed anything from her...and she was on a different floor!) My fibro and EDS are having it out as to who can torture me the most. I was in 3 braces below the hips by mid-day. And my awesome knee brace is wearing out....I need a new one so bad. If it can hold out until I make my way into PT/OT, I'll be happy.

On the list of fails for today: I got two calls from my rheumatologists office. One to tell me that my joints were deteriorating some (mild osteoarthritis) but that I was within the 'don't panic' range - at least for the two areas we scanned extensively. Second call was to say my Vit D-25 was low again. I'm going to call tomorrow to get the exact number from them, but all the same, it's low, and sick folks need their D. And the kicker, when my doc put me on it last year, I took it for 3-4 months and got a recheck. My levels were normal again (low end of the spectrum, but still a passing grade) so she took me off of it. My question was if it's working and keeping me at a low-normal now where I couldn't do that on my own before, why would taking me off of it be beneficial....won't I just go low again? Yeah, that happened. So now I'm back on it. And I'm not going off of it again. It's a once a week vitamin and it's very little fuss (and cheap), so I'm keeping it this time and refusing to go off with this as my example.

Not much else. I'm glad to be home. I'm high because my dopey meds just affect me that much more when I'm already worn down. And I'm eating licorice like an adult ;)

I have a meeting with an advisor at school tomorrow to get my schedule straight for the fall. Wish me luck!