Shout it from the rooftop or just cry, either will do

I just spoke with the geneticist. The biopsy taken over the summer came back a little while ago but we had been playing phone tag. I definitely don't have Type IV (which we knew anyway). Which means based on clinical findings and tests/procedures, I have now officially been diagnosed with Hypermobility Type EDS (which, again, we already knew and were treating for).

It was a bittersweet call in many ways. I cried when I hung up the phone. But I'm not sure what the tears were really for. I'm already getting treatment for a number of issues going on surrounding the EDS and likely dysautonomia (that one hasn't officially been diagnosed, but again, we've been treating it as such). And I've known what it was for years. Now it's as real as it can be. And I'm going to fight that much harder to make sure that it doesn't change my life for the worse.

EDS, you can bite me. Real life, we're gonna win this one!

Physio, day one

Given how unfabulous my last experience with physical therapy was (for my chest pain, a few years ago), I'm very thrilled with how PT went today. I had an evaluation and did some basics with a very great and understanding therapist. She determined the weakest points in my body (as far as large muscle groups and joints are concerned) and where my balance was good or needed work (I balanced on my left foot better than my right, but did better raising up on my toes on my right foot before my balance left me. And we also learned that I don't have balance with lateral/side to side head movement (almost hit the deck twice doing that). I have some exercises to do for my hips (she could feel the tendon snapping in my left one as I practiced, so we altered slightly to make it more helpful than harmful), and two for my shoulders/rotator cuff as well. I won't be able to make it back until after the new year, but I have 12 sessions total and I'm actually looking forward to it.

I have been so very grateful for my intermittent FMLA and it's only been a few weeks. I like the idea of actually being able to take the day when I have an awful day. But I am really hoping I can use those days sparingly (I am still hoping to have a J-tube within the next year...really just hoping the SLU group can figure something out or at least listen to reason).

And today has been a wonderful rest and relaxation day after PT. Which is wonderful :)

Hope you're all feeling well and having a good day. If not, we'll keep hoping for a better tomorrow.

Dysautonomia, how do I heart thee?

Apparently not all that much since my heart rate hasn't made it to 50 in the better part of 12 hours. Even though I'm tired, it's not a horribly dragging or sluggish tired. Mostly I just feel like my heart weighs ten tons (persistently low heart rate leads to turbulence...can you actually feel turbulence in your cardiovascular system...?) every time it beats. That's the part that's exhausting.

So, while I wanted to stay out here and work on moving some PDFs to the Kindle, I think that's gonna have to wait. Time for bed, time for horizontal, time for a lot less heavy thudding in my chest.

Bear with me while I'm all high and fuzzy

Appointment with the GI doc today. The one that was supposed to end with me scheduling an appointment for a J-tube placement.

What did it end in? Tears, frustration, anger, depression (seriously, I think I may talk to my GP about going back on Effexor, low dose, for a little while....I think it might help with all the stress and chaos that's got me so mixed up...as much as I hate the mood change it causes, I think the way my mood is currently running is less healthy, so it's something I'm considering).

My doc said he absolutely will not place a j-tube because it would be worse for me and too much trouble in my life and a mistake as far as my health. Really? It would be worse for me than living on clear liquids and pureed pastas and pudding? I would love to know that works. I tried pleading my case, making everything clear that I knew what I was getting myself into and why exactly I wanted it. But he adamantly refused. He referred me to the specialist group at SLU, who he says will run more tests and try different medications. I asked him what real cure there was for apparent gastroparesis, and he said they had meds and things for that. I'm unimpressed with his answers and reasoning. But I'm going to the specialist group at SLU. ....in 3 months. This is stupid. I have to wait that long to get in, then it will be another year of tests and medications and who know what the answer will be after that. I just hate feeling like crap like this all the time and I'm not stupid (I'm not a doctor, but I do happen to know a few things), I know that this would be so beneficial to me.

So right now, I'm at a loss. I just want to feel good again, not perfect, just good.

On the plus side, I have a neuro appointment and PT eval both coming up in the next month. It would be nice to get someone behind me on the dysautonomia and treatment/management for that. And I'm hoping PT will help me with some healthy/appropriate exercises and get me underway for fitting for some splints, braces, and other supports (especially a knew knee brace, since the dog chewed up my expensive hinged support brace...)

At any rate, the Percoset has me flying pretty high right now (pain, headache, more pain, muscle soreness/spasm). So I'm gonna sit here and just take it easy for the rest of the night and turn in early to get some rest before work tomorrow.

Because I like to do things the easy way

If you're going to get really sick, do it in a hospital.

Went into tachycardia this morning at work. Normally, the intermittent tachy is my heart rate shooting up to 120-130, the wind being knocked out of me for a breath, and the episode ends within a few minutes.

Today we learned new tricks. Like how to jump all the way up to 152. And to just not be able to breathe all together.

When I felt it hit, I went to a vital sign machine and checked my heart rate and O2 sats. O2 was fine despite the fact that I couldn't breathe. Heart rate sucked. And the world was starting to get really foggy and all spin-y. I sat down against the wall and called my charge nurse, told her I was in trouble. She came in, saw my heart rate and my serious lack of breath and grabbed a wheelchair. She checked my blood pressure and we all got a shock at the numbers 140/100 coming up. Down to triage I went.

Within 5 minutes, I was stripped down getting an EKG and my vitals taken again. And taken to a room where I was hooked to a monitor. The episode started dying down then (about 25 minutes total), but I still felt like crap (well, when your heart runs a marathon for 25 minutes....). Labs, x-ray, urine, monitoring, another EKG. As it turns out, there was something wrong during that first EKG. There was an abnormality in my rhythm, which is news to me since any time I've ever been monitored, everything has been sinus. But then, we've never done an EKG during one of those episodes either - never been able to catch it.

So, while everything looked fine by the time I left, we're still going to follow up with the cardiologist to get a full work up and see if there is something there that I should be concerned about.

--

Quick rundown of things to come:

Tomorrow: primary care doc at 0745. Dentist/specialist for a root canal (possibly 2) at 0945. School at 2. (and I'm thinking a short nap when I get home at 4.)

Weekend will be gloriously filled with rest.

Monday: Gastroenterologist. And there is only one thing on the agenda: FIX MY TUMMY! I'm discussing a Nissen (which, we had scheduled a couple years ago and then canceled at the last minute to yank out my gallbladder) to cut off the reflux. And the j-tube, because I can't even eat pureed foods without feeling sick and horrible and about ten kinds of dead. Nothing but clear liquids and that's not healthy.

If he won't do it, I'll find another GI who will listen to reason.

For tonight: a book and bed. Because I have to be up stupid early tomorrow and I kinda had a long day today.

Dear back,

PLEASE stop hurting. I'm laying in the most awkward position on the floor with couch cushions and pillows for support. It's the most comfortable I've been all day. I would seriously consider sleeping here, but I know I would hate myself in the morning.

In other news, I made pureed blueberry bread pudding (a lower fat version so it wouldn't kill me)...and it hated me. It was yummy, but it hurt my tummy. So that was a fail.

Gonna go take my sleeper and hit the hay. Night all.

Ups and downs, because that's how I roll(er coaster)

I'm happy to say that doubling my Lyrica seems to be helping a little. The muscle pain (particularly in my arms and LEGS) has been slightly less the last few days, especially when it's the worst - at work. But I've switched to having an incredible amount of back pain, which negates all the work the Lyrica is doing because when my back starts to twist up like this, it throws off my gait, and makes everything hurt. So. I'm not really sure where the back pain is coming from, because it's never been like this before. I would love it if it would leave me.

I am having some sort of issue with my birth control or my girl parts or something. A few days ago I started spotting (which hasn't happened since I started the BC), it was brown, it was very minimal, like it wasn't really going to do anything. Three days of that. Then discharge. Today, a little more spotting. I really have no idea what's going on since I've been really stable since I started taking the stuff....I even took a pregnancy test just to be sure I wasn't in for more than I bargained for (the chances of me being pregnant were about 0.001 to begin with since I was on the BC consistently and the only guy I've slept with is infertile....so really, I didn't actually believe I was pregnant, just ruling things out here). I'm going to give it the weekend and if I'm still having problems on Monday, I'll call the OB/GYN.

Getting my teeth fixed finally. The pain was getting to the point that I just couldn't stand it and I have insurance that really needed to be taken advantage of. So I'm getting a root canal (possibly two, depending on what the specialist thinks) and a total of 6 teeth fixed (fillings and a crown). There are 8 more we are watching but don't need work at this point. I hate my teeth and I hate that my reflux is doing this to my teeth, but I'm going to be so glad when my mouth isn't killing me every time I breathe.

Oh, and the copay for the root canal is $200....so, I'm looking forward to putting more on the credit card that I was so close to having paid off. Fail.

Came home from work the other night after an extra long shift...I was clocked in for 13.3 hours. I hurt to the point that I couldn't walk when I got home. I used my cane for the night, but my legs just would not move anymore, they were just dead weight. That's definitely a low for me because I've had bad nights but I think that was the worst yet. I considered skipping my evening meds and sleeping in the recliner where I had gotten comfortable...just because I wasn't sure I would be able to get up again.

Major high points? I have a 4 day weekend (well, three, because I have school Monday, so it doesn't count). I have a 4 day weekend with no obligations and the house to myself. My dad will be home tonight, but that's the most I'll see of him for the weekend because he's going hunting. Me and my Bently boy are going to be chillin here for 3 beautiful days. So far today we've spent some time outside (me not as much since it's cold and I'm currently out of arthritis meds). Brought in a few pieces of firewood to keep the stove warm so dad won't have to re-light it when he gets home (and to keep the house cozy, though I don't have it that hot, I've still had the space heater on some today). Doing laundry. I have found I actually don't loathe laundry like I used to. I don't have a laundry day anymore, I just do frequent small loads on days off. This means I'm not sorting (because everything is basically colors that have all color-fasted, so I don't have to worry), and not a lot of heavy basket hauling or hours spent folding. It's 5 minutes folding and hanging and putting everything away and it's done. So I'm doing my bed and the dog's bed (my beach towels that he claimed early on in life....oh well, as long as he's happy) in two loads and I have all day to do it so I've been doing things in between. I sat at the sewing machine for 2 hours (my back wasn't pleased with that)....going to finish this quilt before Christmas this year....I feel bad that it's taken me this long to finish as it is a gift for my stepdad from last year....but it's getting very close to done now. Perhaps 20 more hours of work (I'm not speedy, there's no need to be) and it will be completed.

Today, I'm ignoring my homework. I have a test on Monday that I'm feeling pretty good about but definitely need to study more. But I also need a rest day. So I'm done with the sewing machine today. And basically everything else. I'll bring up the sheets when they're done and that'll be the extent of my work today. Tomorrow I'll cook a little and do some studying.

Have an appointment with the gastroenterologist in two weeks. Going to insist on the feeding tube or a referral to someone who will do it. I can't even eat pureed food anymore without trouble. I'm refluxing and regurgitating everything I eat (except clear liquids), and I'm in so much pain after just a few bites of anything. I hate this and I just can't take it anymore. I want my GI doc to understand this. I know he's hesitant about putting a J-tube in a 24 year old, but I'm hesitant about living on pureed plain pasta and white soda for the rest of my life. I can't function like this. So next Monday has only one goal: schedule a time for surgery to get this damn thing taken care of.

Okay, done sitting here typing because my back is complaining loudly. Going to stretch out on the couch with the pup and watch some old school tv/dvds.

If I updated more often, perhaps I would have far less to cram in each time

Two trips to the ED in two weeks. The dysautonomia flare wasn't going away and I had to work two days in a row. So I went to the ED after my shift, got fluids and tylenol (headache was being persistent, because really, I didn't want anything but the fluids, but I couldn't fight it), and felt slightly better for it the next day...at least I functioned longer than I would have without the bolus.

Two doc appointments this morning. Followup with the breast surgeon. No new cysts, nothing else remarkable and the pain has improved. See her again in 2 months. Saw the rheumatologist. We're increasing my Lyrica (doubling it over about 10 days slowly). And she told me I should see the neurologist about the dysautonomia if it's getting worse like this. I already have a neurologist that I've been seeing regularly for about a year, but there's another doc in her office who has studied dysautonomia/POTS more (I actually cared for one of his patients in the hospital, a teenage boy who has POTS, I educated all the nurses about what it was because they were all lost aside from what the doc instructed to do with him). So I'm going to make my appointment with him instead and see if he and my other neuro can't talk things through and come to a conclusion as to who I should be seeing primarily. Also need to follow up with my primary because I haven't seen her in a while and I've been to the ED and changed meds and all kinds of things. So Friday I get to make a ton of phone calls and figure out when I can do all of this and somehow still afford food. I also have an appointment with the ophthalmologist Friday, so yay for new glasses soon. And I see the dentist on Monday (I need dental work so bad right now and there's no way I can afford the stuff that insurance won't pay...but hopefully a couple root canals will hold me over for now. And then to the GI doc the week after that. I'm hoping we can duke it out over the feeding tube once and for all and schedule this thing. I am not looking forward to more tests and craziness when none of it is actually helping me.

And Christmas is all too near, which means I'm going to be even more broke than I already am....oh goody.

I'm looking into requirements and eligibility for SSI/SSDI. And so far, me working is looking like a potential problem because if I can work full time at the job I do now, there should be no need for me to have SSI, but I only work because I have no other choice right now. I've grown fond of food and shelter. The other issue is that I realized I have more assets than is allowed if you add up my savings and 401K. So I'm thinking about cashing in my 401K and just saving cash from now on so that I have a little money reserved if I need it, but won't have to worry about that holding me back from my benefits.

Anywho, had a busy day and I'm falling asleep just sitting here. So peace out to me.

Inevitable

Morphine in the ED on Tuesday morning. Oxycodone twice on Tuesday afternoon/evening. Oxycodone once on Wednesday (would have taken it twice but I had to get through school first). Which means today is laxative day. I meant to take it yesterday but my brain left me. So today, along with my fruit/veggie supplement (which seems to have helped my bowels a bit) I mixed in a full dose of Miralax. My gut is already churning, reminding me that it hates me. I'm glad I'm home today and not at work. Because I'm driving tomorrow, so today has to be poo day.

Ah, to be a 24 year old worried about bowel and bladder habits.

Never an average day

The alarm goes off at 0430 first thing in the morning. It goes off again at 0440. I'm certainly not awake, but I'm moving, and my eyes have opened in the darkness. I reach for the heat pad that is tucked into the side of my bed for easy access. It's always there. I put it on my chest, turn it on high and go back to sleep for a little while. I'm not completely out now. And sometimes, not even asleep at all, but just in a foggy haze. It's a good time to check my email from my phone or play a game of Hanging With Friends. Helps get my mind moving if nothing else.

After a good amount of time on my chest (fibrocystic breast disease...heat is apparently one of the best things for comfort), the heat pad spends time elsewhere. Whatever hurts or feels stiff. And I start moving around then. Listen to everything give an echoing "pop" in the dark silence.

Everything settles into place after ranging arms and legs, moving my neck, rotating my hips, flexing my wrists, clenching my fingers. I keep my clothes on the trunk at the end of my bed so that I don't have far to go, can dress comfortably on my bed (and in the case of the current weather, in front of the space heater that sits on the trunk to keep my feet warm.

Compression stockings first. Lot of time and work for those (I'm up to 30 mmHg, they're tight). Underclothes. Scrubs. Glasses. Sneakers.

Put my feet over the side of the bed and stand slowly. Few more pops and snaps. More settling. Get my pills out of the organizer on my bedside table, phone and chapstick in my pocket. Grab my backpack (containing several braces and splints and other misc work items). Let the dog out of the kennel where he has been snoring through my wakeup process for the last 45 minutes.

Down the stairs to let the dog out the back door. Back up the stairs to my bathroom. Hair (a ponytail at most), makeup if I'm feeling up to it (eyeliner and eyeshadow is usually the extent), deodorant, teeth, mirror check.

Down the stairs again to the kitchen. An egg on toast if I feel like eating. Mix up my fruit and veggie supplement in some juice (it tastes horrible, juice has worked best). Take a handful of pills and have a quick breakfast. Put the dog back in his kennel. Grab a soup or something simple for lunch. Out the front door.

My new vehicle has seat warmers...those have been a God-send the last couple weeks. 45 minute drive to work.

Clock in at 0653. Clock out at 1923. In between, give half a dozen baths, change 10 beds, take vitals, re-position patients. Transport patients. Talk to patients, family, staff. Walk approximately 7 miles up and down the same 3 halls. Have a 30 minute lunch break. a 5 minute rest/drink a couple times.

45 minute drive home. Spoil the dog, shower, snack or drink if I can manage. Another handful of pills. In bed by 2100. A little reading. Lights out by 2200.

And pray that my day off is tomorrow.

For today, resting, relaxing, pain meds, lots of fluids (ice and clear broth are nice for an upset tummy). Snuggles with the puppy. NCIS marathon. Some computer time. Plenty of lazy/relax time.

Days off are gold.

It's that time of year

Yes, I mean dysautonomia flare up season.

The last week has not been great, to say the least. And the last few days are really trying my nerves. I've had brain fog to the point I'm stuttering around words. I have been having POTS-y issues - high, irregular, pounding heart rate, shortness of breath related to a crazy heart rate, BP fluctuations, dizziness, faint feeling, nausea, headache.... - you know, all the normal stuff, I've been in a stupid amount of pain, which has increased daily, making today hell plus three, I've got no energy, no drive, just want to lay around with my heating pad and space heater and not feel like death every time I breathe.

I hate days like this. I wonder what my life will be like when I'm older, given that this has only progressed with every year that passes.

And I'm wishing my doc would give in and do the J-tube procedure, that way, I can try to avoid days like this, or at least feel a little better when I have to go through this. Because I have had very little to drink today, which is making things worse. But I have no appetite, and everything makes me sick (I gave in and went to McDonalds today because I figured even if I felt like crap afterward, at least I actually ate something, because nothing else sounded good.

I really want to take a shower before bed. I took one last night and washed my hair, and took another one this morning after I gave the dog a bath (but only did a quick scrub because I was tired). My hair will last another day, and I really don't think I'm all that funky, but I feel gross. And I feel like a hot shower would be great. But my body is having a hard time just mustering the energy to type right now.

I think tonight should just be a early to bed with a book kind of night. I don't think I have the energy left for anything else.

And I need to call my doctor in the morning because I've been taking my PRN beta-blocker for the POTS symptoms, and realized tonight that I had two doses left, which will get me through two days if I'm careful/lucky. But I really don't want to run out while I'm feeling like this. I hate taking the beta-blocker because my BP is already so low that it just makes me drag, but it takes the edge off the feeling of my heart wanting to explode.

2000. Time to curl up in bed. I surrender.

No seriously, I still can't believe it....

After more than 3 years of hell, I am finally back up to my healthy weight. I'm in no way healthy, but my weight it better, and that makes me feel better. I was holding my own around 120 (with a lot of empty calories, since that's pretty much all I can eat - plain white flours and sugars), but the birth control pills tipped the scale for me. I've been at 124 or higher (always some fluctuation) the entire week. I seriously can't believe it.

Of course, I've had absolutely no appetite all day, and even when I eat something yummy (knowing there will be consequences) just to make myself, eat, it still doesn't do anything. I haven't finished anything today. Fail. Hopefully tomorrow will go better. If nothing else, my baby nephew is gonna keep me busy, so maybe that'll get my appetite going again.

I have a disability.

Not something I say much. Or ever. There seems to be a lot weighing on the word "disabled" and I feel like that I'm not. Not the things that people think a disabled person should be. I don't feel like I'm disabled. But at the same time, I really do.

I don't remember what it's like to go through a day without pain. I don't remember a time before EDS and researching everything I could to figure out why this was happening to my body and what I could do to help myself. I don't remember a day that I didn't think about EDS, my body issues, my differences at least a million times a day.

Yet, I still have a hard time calling myself disabled or saying I have a disability. The fact is, by the very simplest definition of the word, I do have a disability.

I talked to my boss. She's knows a little bit more about my disease now and although she's never heard of it before, as a nurse, she understands just how extreme the words "connective tissue disease" can be. She's helping me to get my medical forms for work straightened out so that I don't end up penalized because I just can't get out of bed one day. Bless her for being so understanding and helpful. I only hope I can get up to the number of hours I need to get the proper medical leave form before I get sick again.

With any luck, my next rheumatology appointment will lend to more options about treatment. I really want to get into therapy and start getting the right splints/braces/supports/etc that would make my day more productive and slightly less painful.

But for today, I accept that I have a disability. Because I have to. Denying it won't change anything. And at least this way, my perception of myself changes for the better. Because I've never thought as a disability as a reason to be anything other than human. So this just makes me human, like the rest of the world.

Dislocated my foot

Thank you EDS. Sunday I managed to dislocate my foot (lateral part of my left foot, about halfway down where the 5th toe runs) three times in a couple hours. I've also subluxed my thumb a thousand and one times more than I usually do this week. And of course my shoulder twice. All since Sunday. Not that I don't sublux and dislocate often, but this week just seems like it's been overkill.

Not to mention stabbing stomach pain yesterday. And the reflux returning. I was hoping that the Cipro was actually helping with that (got Cipro after the hydrogen breath test came back positive for bacterial overgrowth in my gut, and it was actually helping with the reflux a bit....went from refluxing 90% of the day down to about 50%, but it's coming back again and I haven't been off it that long).

And my appetite has been at it's worst lately. Haven't had an appetite, forget well into the afternoon that I haven't eaten (usually still manage to finish a soda though), when I try to eat it hurts, I've been choking, refluxing, getting full too fast, unable to digest anything. Fail. I don't have another appointment with the GI as of now, because we were talking about me going to a new specialist group. But if that gets to be taking too long, I'll call him and either get the specialist group appt set up or see him again about some of the other tests and treatments that were still in line before the J-tube. I'll let him do his tests and rule things out if thats what it takes, because if there was something we could do for all of this besides feeding tubes, I would be all for it. I'm just not feeling optimistic about the fact that it won't come to that in the end. And really, I'm okay with the feeding tube. I just want to feel a little better.

I have school again today. We'll give the chairs one more try, then it's time to do something about the comfort level so that I can focus better!

Wait for it, it'll most definitely happen

I am only taking one class this semester (the second had to be dropped because of wickedly poor timing around everything else, I'll do it next semester though :D ). And it happens to feel like the longest class ever, clocking in at a mere 1hr15min, twice a week.

The chairs sit just a little too high for me in the lecture hall. This means that I'm either sitting back with my feet on the floor, causing my hips to settle out of place, or I scoot forward so that my feet touch better, leaving my back unsupported (and also causing me to lean forward on my elbows on the table), or the chair is just so damn hard and ill-shaped that everything sucks.

I give it another week before I start bringing either a step stool, cushion, or both to make that hour more tolerable.

Plus side: I convinced the professor, who is very against computers in her classes (computers, cell phones, ereaders, everything should be turned off and put away) to let me keep my netbook. I can type much easier than I can hold a pen. My hands just fatigue too quickly to be holding a pen for over an hour like that, and come winter, it will be even worse. I don't have a disability form filed with the school (because I don't think I need one, I don't have anything listing me as disabled anywhere else because I can't afford to let it cost me my job, a job which I can still do), but she told me to write up a contract as to why I was requesting it and to promise to stay offline (I keep my w-lan disabled on that computer most of the time anyway, its sole purpose in life was to be a typing/notetaking machine). She accepted it. And I have my little red bite with me in class still. So far, things are looking great!

The oy vey of it all.

I can't reinforce enough how much I do not like taking broad-spectrum high-dose antibiotics. It gives me a tummy ache and makes me have to poo all the time. NO! (10 more days to go :\ )

Birth control, ye are my frienemy. One the one hand, I haven't had a migraine this month. It's glorious. Like, shout from the rooftops awesome. On the other hand, I knew that it would make my period funky for at least one more cycle. And sure enough, that happened. about 7 days after I should have gotten my period, I started spotting (like you do right at the end, with that little bit of brown/old blood). Today, while at work, it started in pretty good. Only, it never turned into an actual period. Just dark dark brown (seriously almost looks black) thick blood and clots. The clots aren't big enough in size to worry me. But the fact that it's just so much of this mess is a little obnoxious (and slightly worrisome - but I'll give my body time to be angry at me for intruding upon it with hormones). So, no migraine, minimal cramping, a whole lot of yuck. And on top of that, the float trip is this weekend. My skin is already not feeling so great from wearing pads all day and I don't think tampons are really called for right now (there's not THAT much, and it's so thick that a tampon would absorb it). Which leaves me to either wear a tampon in the water or just let my butt sit in the water without anything all day (which I've done on my period in the past). But this just sounds like a UTI or vaginosis waiting to happen. Oy.

Let's do this better next month body.

Also, not that anybody but me would notice it - small is still small - but birth control has actually caused (non-painful) breast swelling. That part I could REALLY get used to ;P

I think it's time for pills and some Harry Potter before bed. Peace out kids.

Things that go well in a broken body

My period was due this week (I always give or take 3 days when I'm estimating, but that has passed now). I'm really feeling optimistic that the birth control just might be doing the trick. I also haven't had my pesky monthly migraine that goes with it. I did have a headache today, but there were a lot of factors adding up that triggered it, and it most definitely felt more like a random headache than my hormone migraine.

I know that since I started the pills halfway through my cycle and only being the first month on them means that I will likely get some kind of period/spotting before I get enough hormones in me to really regulate things, but I'm prepared for that and I know that it will be nothing compared to how I was before.

So bonus points for that one. (half a point taken away for the pill being new/name brand and costing $85/month, so we'll have to make absolutely sure my insurance is going to play nice when I get the actual prescription - on sample packs for 3 months to see if it's what I need)

Had my upper endoscopy (EGD) yesterday. Went really well. Last time I had it done, about 3 years ago, it went well, but the anesthesia left something to be desired (I was given Versed, conscious sedation). I was groggy the rest of the day, and had amnesia for several hours (both normal). Though I didn't know that this could actually be improved upon until I had Propofol this time around. It wears off immediately so that you can actually walk and have a conversation and all that fun stuff. But you're out cold, rather than conscious but out and not caring about the things going on with your body. I was told to turn on my side, a bite guard was put in my mouth (I hate things around my mouth because I have gotten a bit obsessive-compulsive about my teeth and lips and the constant reflux taste in my mouth), and I was told to just relax while they started the Propofol. I nodded to say I could feel it, I blinked, then woke up in recovery. It was a pretty great nap :P

The scope showed good things. There's very little erosion in my esophagus (because I'm refluxing more neutral stomach contents rather than acid), stomach and duodenum looked to be in good shape (though still sluggish). Took several cold biopsies. One bleeder needed to be clamped off (I should expect a silver clip in my poo in a few days :P ) and everything else was good. My throat HURT and my voice was all gravely until this morning (now it's just a twinge), and the bite guard made a hefty blister on my bottom lip (which felt more like hell this morning after it had time to become more irritated - seriously, the whole right side of my bottom lip is cut up and blistery and puffy...I hate EDS skin).

The whole team was excellent and everything was fast and easy. Glad it went well. Once the results from the biopsies come in (there's no reason to believe they won't be normal, just routine) I'm going to get a referral to a small specialist group at another hospital. 3 female docs who specifically study GI disorders in women. My GI doc thinks they might have some useful input for me. And he just wants to make sure that he's covered everything before we go for the feeding tube.

******

Something wonderful I found this week: I was craving cake. I found a quick and easy recipe I was able to modify for my diet and still taste incredibly yummy. And because it's hot here, it's microwavable, so no need to heat up the house with the oven. It's about 2-4 servings and takes all of 5 minutes to make.

1/4 cup white sugar

1 egg (or egg substitute - I'm going to start using this more because it's less fat, translating to less pain, especially when I have an egg for breakfast before work)

3 Tablespoons of butter/oil (I use plain, no sugar added applesauce from a jar or homemade, and everything in the same proportions...3 T of butter = 3 T of applesauce)

1/4 cup milk (I use almond milk - plain or flavored - or rice milk, both are amazing)

1/2 cup white flour (or flour of choice...I usually use white flour, but I've used almond flour in my baking too, just no cornmeal/corn flour, that one is harder for me to digest)

1/4 - 1/2 tsp baking powder

pinch of salt

2 Tablespoons cocoa powder (I leave this out sometimes or use less as chocolate irritates my gut)

Do it just like regular cake. Mix the dry ingredients in one bowl. Wet ingredients (including sugar) in another ( a coffee mug is plenty big for this part). Pour them together, and mix until all the flour is wet. Spray a medium microwave safe dish with fat free cooking spray. Pour and microwave (loosely covered) on high for 2-2 1/2 minutes. Turn out onto plate. AND ENJOY!

I've made this 3 times (share it with my dad) in the last week and it's wonderful because my EDS can't complain about time spent slaving in the kitchen over it. It's so freaking simple and wonderful.

*****

Not so great thing: about once a month, I get really irritated with not being able to eat anything I like. I miss food, I'm a great cook, I enjoy food. So just about every 3-4 weeks, I'll eat something that's not on my diet, full knowing that it's going to make me feel like hell. Today was that day. I had a coney and fries. There's nothing about that that is good for me at all. But something I love very much. That was at noon, and I still feel sharp pain and pressure - it's 9pm here (and I think that also contributed partly to the headache). But, it is what it is. I really enjoy and savor foods so much more when I do this because I know how little I can realistically do it.

All in all, it was worth it to enjoy real food again. And now that I'm reaping the repercussions of it, I'll be able to hold off again just fine for several more weeks.

*****

I think perhaps that's all for now. I'm gonna surf through tumblr for 5 minutes and see if anything good has popped up since I was on last a few days ago. It's nice little pick-me-ups :)

Hope all is well with everybody!!! Much love!

The cold wet nose on my leg...it keeps me alert

Got a puppy here, he's going to have cabin fever if we don't get rid of these clouds soon. He has to spend time outside otherwise he drives me bonkers. So sunshine, come on out.

Hydrogen breath test went well last week. The prep for it sucked. Even though my diet is pretty restricted, the prep is even more restricted. The only thing I ate all day was plain white rice with a little salt, saltine crackers, and water. That's it. I was feeling crummy by the end of the day. But the test went pretty well. I did my controls, then had to drink lactulose, which was mixed in a few oz of water (you know, it doesn't taste bad when it's diluted enough, and I was just so happy to drink something - I had to be NPO for 12 hours for the test, so well before I went to bed). I did get some cramping and eventually the laxative effect of it kicked in - luckily well after I got home. The test took 4 hours, and I had a book and my netbook with me, so it passed by pretty well. I'll get the results from that in a few weeks.

Birth control is going pretty well so far. Haven't had any noteworthy side effects which is good. And I'm due to start my period in about 3 days. Given that I haven't been on the pill for even a full 3 weeks yet, I'm not sure what will happen this week. I expect to be a little out of whack for a while. But if this works, it'll all be worth it.

Still having breast pain. Really bad. It's so weird because it comes and goes. It fades halfway into my period, then about 10 days later, starts up again. And grows in intensity with each day. There's no rash, redness, drainage, lumps or bumps. It's just swollen and painful. The gyn and I are both stumped because if it was hormonal, it would be bilateral. If it was an injury, it would be constant. We're going to see what the birth control does for it and re-examine in a couple months.

Got things to do today, so it's time to hop to it.

Happy EDS day to me, huh?

Yesterday was definitely a "flare" kind of day. I was having ridiculous issues all day. Luckily, not terribly painful ones, but mostly annoying. Like the fact that I dropped everything I picked up. Everything. I spent more time reaching to the floor for my pen, clipboard, alcohol wipes, shears, gloves, blankets, gowns, EVERYTHING. There wasn't a single thing I didn't promptly drop after picking it up. My fingers were just not having it. It's really frustrating because it wastes SO MUCH TIME and it's just plain embarrassing. I mean, nobody made fun or anything, but the fact that every single person on my floor watched me dropping things all day...and it's not like I can explain it. Some of them know I have a "bendy disease" or "connective tissue disorder" but I never really do much explaining after that because it took me a couple years to get the hang of it, there's no way I would expect anybody (even hospital nursing staff) to really understand why it was that I just couldn't seem to keep anything in my hands.

Oh, also spent a lot of the day tripping over my own feet. That was fun too. I came really close to meeting the floor a couple times. And every time I tripped, my shoes made that horrible screeching sound against the floor. So of course it got everyone's attention even if I wasn't in their line of sight to begin with. Again, not like I can explain that this disease I have that makes my tummy stupid (mostly, they know of my GI issues, because it comes up a lot when you share meals with people or talk about food) or my joints hurt (yup, carry a backpack full of braces and supports to work every day, and sometimes, they come out to play) is also what makes me ridiculously clumsy. More clumsy than I can explain away.

I was glad to see that my dad wasn't home when I got home last night because it gave me a good excuse to have a small drink by myself and just chill. Yeah, alcohol isn't conducive to the clumsy, but it sure is nice going down, and I do have to occasionally indulge in something, otherwise I'd go completely insane (-er?). So I got my cane, made a small drink, and plopped my ass on the couch for a couple hours. Then to bed, sleeping wonderfully (with my regular klonopin of course).

So, that was fun. I'm glad today is going better. Granted, I haven't done much today, which is also just fine. I just came in from some time outside with the puppy in the sunshine. I take my book out there and just bask in the yummy sun!

Now the puppy is napping (the heat always makes him zonk out), and I'm considering stretching out on the floor with a movie and a nap myself. Ah, what a lovely day off for me. I hope I still have plenty more of these after school starts. They are most definitely what keep me going strong!!

Something in the way of win

Went to the OB/GYN earlier this week. She's started me on birth control. Which is what I expected. Only, I'm going to be doing it in an effort to stop my periods this time. Since it seems that the issue is related to the drastic hormone flux a few days before my period, seemed like stopping that action all together was the best bet. So I'm taking a new pill, very low dose, and at the end of the pack, instead of taking the placebos, I just go straight into the next pack. In a few months, this should hopefully stop my cycles and keep me on a pretty regular dose of hormones to play with. There are side effects to everything, of course, but given the monthly trips to the ED, I think we've definitely concluded by now that side effects are squashed by necessity.

Went to the GI doc this morning. Had a laundry list in hand. The previously discussed J-tube that was not an option is now back on the table. But we've still got another test and consult before we make that final leap. Having something called a hydrogen breath test done. Basically to test the amount of bacteria in my gut and what it's doing during digestion. I go in early, take a drink of lactulose and hang out for half the day, intermittently breathing into a bag. Lactulose is not digested by the stomach, but is by the bacteria in the intestines. If I have too much bacteria, the lactulose will be digested violently and create hydrogen gas. If there is normal/not enough bacteria, there should be low levels of hydrogen gas in my system after a few hours. There's a strict diet the day before (which I'm already doing anyway, minus the soda...no soda before the test, and I currently live on Sierra Mist Natural, guess it'll be gatorade that week), and no sleeping or leaving during the test. So I'm going to get some reading done!

The other option for testing the theory was a hefty dose of antibiotics. But antibiotics (especially the strong one he was recommending) already do a number on the gut, and I know the risks of taking antibiotics. If there's another way of testing without taking antibiotics, I'm all for that. If it comes back that I do have a bacterial issue, I will willingly take them then. The only problem there is that even though Cipro would just be 10 day courses, I could be taking it regularly for the rest of my life to control this (like once a year was his guess).

I also requested an EGD, which he had no objections to. I had one three years ago and my symptoms have drastically gotten worse. So I want to keep track of what it looks like in there. The biggest risk for chronic reflux sufferers is a pre-cancerous condition/cells called Barret's esophagus. Regular screening is the best attack. Plus, there's a whole lot of GI tract to cover; I'm sure there's lots of funky going on in there.

So, things went well with both docs this week. I'm very glad.

And I drove home to see the family today :) I got baby snuggles earlier! My little nephew is so precious and he's getting so big so fast! Agenda for tomorrow is some best friend time (she and her family are moving back here from far away land, so we're going to go see her new house tomorrow). Saturday I get more baby time and dinner with another best friend. Life is good.

Time for sleep for this girl. Much love all around!

A sublux and a cool team

I subluxed my neck in my sleep. I woke up at 0430 at a right angle with a crick in my neck; light, but there. I got up at 0500 and showered, hoping the heat would relax it. It got worse as the day went on (heat and ice throughout the day for comfort). At one point, when I couldn't turn my head and it felt like a spider web of needles was wrapped around the base of my skull, I realized it wasn't a plane jane stiff neck. So that's fun. Took another shower (that's 3 in 24 hours now...) and the bedtime Klonopin is working its magic (doesn't relieve the pain, but it's magic all the same ;P ).

Anywho, there's that. I'm off work tomorrow and don't have school until evening, so I'll have time to relax it.

Ended up back in the ED a couple weeks ago for another hormone migraine. It was a REALLY good visit as far as ED trips go. I had 3 nurses in the 4 hours I was there. One signed me in and took the abbreviated history, one came in to do my H&P and start my IV, and the third was my actual assigned nurse (who was tied up when I came in, which is why nurse 2 did the start-up stuff). Nurse 1 was sweet and polite and great for the short time I saw her. Nurse 2 was one I had last time I went to that ED for a migraine (about 4 months ago). She remembered me vaguely (and I did her after a few minutes as well....pounding brain makes memory recall difficult at times). She asked me what I felt like would help my head (since she also remembered that I worked in medicine and had done this more than a couple times...) and I told her it would only take fluids and IV Benadryl. She relayed that to my nurse (Nurse 3). Nurse 3 came in and hung fluids and talked to me more in depth about my migraines, history, treatment. I told her as well what it would take/what I would like for resolution. She found me Awesome Doctor (of the attendings who were on that night). Awesome Doc came in and started by asking what I wanted. I said fluids and IV Benadryl. He asked me what dose I normally got. I answered 50 at home but only 25 via IV (because I'm small). He said that sounded good. I wasn't asking for pain meds (not even the non-narc kind), I was obviously educated, treatment I suggested was valid, and he said that in cases like mine he doesn't do pointless tests that would only cause more pain and not bring about any new answers (we already knew it was hormonal). So he agreed to my treatment and put the order in.

He and the rest of the medical team on the floor were then pulled into two major emergencies simultaneously (either of which could have easily occupied the whole team alone), so he ducked in just long enough to say that they hadn't forgotten about me (I already knew what was up - I saw an unconscious teen in rough shape come through the ambulance bay and heard the cardiac monitor across the hall go from brady to tachy to nothing in under a minute - heart attack - so I waited my turn).

35 minutes later, patients were stabilized and sent for tests, I had sucked down a liter of normal saline, and the nurse was walking in with my meds and more fluids.

A little under 4 hours after I walked in, I left with 2 liters of fluids in me (and reflux and junky lungs to boot) and a short nap that resolved the pain.

Woke up in the morning with all kinds of reflux and still incredibly junky lungs (you get that much fluid that fast, it can't leave fast enough....you WILL get fluid-overload-related symptoms). And no more headache. I called that afternoon to make an appointment with an OB/GYN. We're going to get this crap figured out. I imagine I'll end up on birth control again, but I'm willing to go that route at this point.

**

And because Klonopin + neck pain = completely wiped out....

Post part two, day two.

Made a med change last month. I felt like the Klonopin wasn't working the same as it used to - I'd had a couple wakeful nights, some insomnia issues with falling asleep, had a nightmare that kept me up all night (I have more nightmares when I'm in pain, and they're intense enough to leave me shaking and scared all night...that went away when I started taking an anti-anxiety at bedtime). Switched to Ativan at the same doseage. But it didn't seem to affect me at all. I felt nothing when I took it. So I called the doc back at 3 weeks and asked if she could switch me back to my old script. I'm getting the Klonopin at the same dose again, but I'm only taking half a tab on a regular basis and saving the full dose for the nights that things are worse or if I've been in more pain during the day. So far, that seems to be doing the trick.

Decided yesterday at work that I'm definitely developing a sensitivity to the gloves we use. It's not uncommon to develop allergies from frequent exposure to things. And I've been wearing those synthetic vinyl gloves for 9 years as part of my job. When I put them on, my sinuses feel stuffy/congested, and I itch from head to toe (especially my face) - with no rash. My hands turn red and get blotchy (which doesn't look like much more than hot sweaty hands that have been in gloves...except that with the Raynauds creeping into my limbs, my hands are always white, not red). I told my charge nurse, and she was sympathetic and found me a box of blue nitrile gloves in my size - given that we're an oncology floor, they were easy enough to come by. But on other floors when I float and with some other nurses who are all business, it's going to be harder to convince them that I can't work until I have those specific gloves. So I'm going to have the doc today list it as an actual allergy so that nobody is allowed to harass or punish me for refusing to work. Because they're more expensive, the blue nitrile gloves are not something we readily keep on the floors. We have to get them from pharmacy supply when chemo drugs come to the floor. Or a charge nurse or house supervisor can ask for them specifically (like when they don't send enough to cover our chemo patients). If I could get them myself, I would, but it has to be a charge nurse. So seriously, I have to wait to get them (I plan to ask for more when I'm down to 1/4 box).

Should be interesting to see how it goes. ...maybe I'll ask the doc to print off a note that I can take to my supervisors since this allergy affects my work (hey, I get a note when I have to get my annual PPD/TB skin test because I'm allergic to that too - not a positive reactor, just allergic).

Great thing: yesterday at work, one of our new grad nurses found out she passed her boards. She knew it would be posted at 2 pm and EVERYONE was waiting anxiously all day (we knew she would pass, there was no doubt about that). Time rolled around, results were posted. She jumped up out of her chair (after pointing to the PASS on the computer monitor that we were sitting at), then ran down the hall where the rest of our team was. Five seconds later there were screams and laughter (beautiful sound) and ten seconds after that, my charge nurse made an overhead page announcing that Amy had passed her boards. Yeah, my team is freaking cool!. And I'm so glad Amy is part of our team!

I have that previously mentioned OB/GYN appointment today, so I need to get moving around here and get dressed. I also have school this evening, so I've got a busy day with some breaks. And I'm going to get to school early and walk around for a while, since my neck is too stiff and sore to get in a good workout.

Dysautonomia days. Oh the fun!

Been a long week. Seriously. My blood sugar has been nuts (mostly very low). I've had IBS. I've had pain all through my gut from the IBS. I've been choking. I've been having intense arthritis pain. I have swelling in my feet/lower legs. I've had a headache. I've been weak. I've been tired. I've been very dehydrated.

I could go on, but I think you get it.

Yesterday I had a HELLISH day at work. I was so sore and tired when I got home. I called staffing and requested VTR (volunteer team reduction, if they have to cut staff, you get on a list to go first, it's really convenient when I've had a horrible day and need to take off a day without taking more sick days. it's not always a guarantee, but about 3/4 of the time, you get the day.) After yesterday, I needed the day. Called. Requested. Got the day. Only, they didn't call and tell me, so I got up, drove 35 miles/45 minutes to work and found out I was going home. I was pissed. I didn't want to work, but that was not how I wanted to start my day.

Regardless, I have the day now.

I took Arthrotek this morning for the pain in my chest (serious arthritis in my chest) which helped some. And changed into comfier clothes.

So here's the lazy day in a nutshell:

Started out with a hot drive early this morning. At 0600 it was already 80+ degrees. And so very muggy. This heat wave is horrible and so is all the junk my body does to rebel against it. Heavy heat, not okay. High today is supposed to be in the 100s again, heat index somewhere in the hundred-teens.

Swollen and achy legs. I have my compression stockings on under the knee highs (that's how I do it for work, just decided to leave the knee highs on so the dog couldn't scratch my stockings and tear them). Feels so good to have them up. Felt even better last night on the wedge pillow. My hips also appreciate not taking on my body weight today.

That's my Bently. Doing what he does so well: being a lazy bum with me. It's hot here, and we're not maxing out the AC, so it's warm in the house. And he's very lazy when the house is hot. Which works well because then he doesn't want to sit on my lap or be rowdy all day. He has since moved from his spot on the floor. He's on the couch by my feet now...licking the pillow my legs are on. Licking it like a lollipop...I can't imagine it tasting good but okay.

Lazy central. I have my table pulled up to the couch. Got my computer, tv/dvd remotes, paper and my chapstick. Command station for lazy days is necessary.

Dysautonomic Stacey. So very tired (yeah, nap time is in the very near future). I don't know how I would have survived work today if I actually had to go in.

Me and puppy and lazy against the world today! That's all I need.

Bendy friends...or companions

My puppy is a bendy too. And he demonstrated this well with his choice of napping place a few days ago. This is not an unusual event. He's always this goofy.

Plans, we always know how those end, but we make them anyway

I was in just a stupid amount of pain the other day after eating something that would be so harmless to anybody else. Hours of wondering if the stabbing in my stomach was going to stop. And wondering when I would feel like eating again since I was at work and my blood sugar was dropping.

So I found a corner to myself and called my GI doc's office. I made an appointment. Because this really has to stop.

I'm going in with the same goals, but revised, and more persistent.

I'm requesting an EGD. I had one three years ago and I'm sure a lot has changed since then.

And I'm requesting two surgeries. First is a Nissen fundoplication. It will cinch my LES up tighter so that I can't reflux every single thing that passes my lips. Because my reflux isn't even all acid related, most of it is just stomach contents. That stuff shouldn't be coming back up. A while back I saw a specialist that primarily just focused on reflux related diseases and very stomach-only issues. We had talked about doing the Nissen that I was going to have done about 3 years ago. He was on board with it and wanted to run one more test. That test showed that what was going on with my stomach wouldn't really make a great candidate for that procedure, and referred me to my GI doc to do treatment.

Now, however, things have gotten much worse.

I'm also asking that a J-tube be put in. I've asked for this before and was told that I was too young and not sick enough (yeah, you try and figure that one out because I sure couldn't). But I'm getting sicker and sicker. Fast. So I'm going to my GI doc with information and research and about a billion other things. With the two surgeries combined, I'll still be able to get nutrition even though the Nissen will make it very hard for me to eat anything.

I am willing to have a nasogastric J-tube put in as a trial, to show that I can tolerate it if that's what it comes to, but I'd really rather not if we can just do the surgery and get it over with.

It's not like I'm asking for narcotics or plastic surgery. I'm not asking for a walk in the park. I know this will be hard and take a lot of adjusting. But if it means I'm a little healthier and feel a little better, it's worth it. Because I am having more and more days that drag me down to the point I don't feel like trying anymore, and that's just not me. I need to feel better. I need myself back. I know this won't be a magic trick, won't heal or fix anything that's already done. But it will help.

I go to see him at the end of the month. And if he won't at least consider it, I'm going to find another GI doc who will listen to me and at least tell me an actual reason for saying no (because I don't buy his response, there's no age limit on illness, and just because I don't look sick doesn't mean I'm not).

So there's that plan. And I'm going to get something out of it or die trying.

Stupid girl is stupid

Okay, I know my body, know my limits, know what I should and shouldn't do.

Doesn't mean I don't royally fuck up from time to time.

I was a patient sitter today in the ICU, which meant that I did not get enough breaks to eat, drink, and pee. This led to a headache, dehydration, and bladder/bowel spasms. So when I left work, I was so anxious to get food and fluids in me, I made a bad judgement call: I stopped for food. Or, not food. Anything on a fast food menu has more fat in a single "serving" than I usually eat in a whole day. Once in a GREAT WHILE, I can handle it. Today, since I was already food/drink deprived, my body was pissed off. Feeding something stupid to a pissed off body never ends well.

So three hours later, I'm still in a huge amount of pain, my stomach is distended because it won't digest, and I'm nauseated. Not my favorite feeling. But I got what I deserved for messing with the diet (because dammit, that's working!).

Ativan went down as soon as I could allow it, and it's helping the pain and nausea some. But I'm still not going to bed any time soon.

Which is okay since everyone is going firework CA-RAZY here tonight and I want to sit up and write for a while since I haven't in a few days.

....now if only the puppy didn't want to sit right on my protruding guts and play rough....

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 on....as 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

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.

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 off...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!

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.

Blah

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.

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.

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 hospital....you 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!

Moving day!

So, I went to bed at a really stupidly late hour last night. I just couldn't seem to get off the computer. Stupid, really really stupid, I know. So I didn't make my 0430 workout this morning. I almost didn't make it at all....I somehow keep managing to turn off my cell phone alarm instead of hitting the snooze, and I forgot to turn up the volume on the clock radio last night so it was barely a whisper when it went off this morning. But I wasn't late for work.

And today was moving day. My boss came in early (in scrubs too! she's adorable, I swear) and greeted us all as we came into the conference room (to clock in) with "Happy Moving Day!!!". We questioned her sanity, then her caffeine consumption, then went on with it. Our floor (3E) is being remodeled. So we're moving down to 1E for a while - first rumor said 4 months, second said 1 year...I honestly don't know. 1E is much smaller than 3E so we capped after so many admissions yesterday and then proceeded to move every patient, their belongings, all of our things, and anything else that wasn't nailed down to the unit down 2 floors with us. And it was so beautifully done! Could not have gone better. We had our regularly scheduled team, then several others were brought in (our own staff, but it was their days off, so they were getting overtime! Bank!) for the sole purpose of doing the move. I was "working" today so I was strictly patient care. But the unit was emptying out fast, so my job was getting easier and easier as the morning went on. It took less than 5 hours to get our entire floor down to the smaller 1st floor and start setting up. Then I just had to get acclimated to a new floor. Which wasn't easy, and I'm sure I'll still be asking where things are when we leave, but it's smaller, which makes it a little easier. And then since we had an abundance of staff, I got to go home early. Only 2 hours, so I wasn't missing heaps of my paycheck, but that extra two hours helps so much!

Working with the sunburn today didn't feel fabulous. In fact, I didn't even wear a bra today, just a snug undershirt (benefit of being flat chested: nobody notices)....my shoulders seriously hurt. And I was a little sad when the big lunch party we had in celebration of a good move consisted of all foods that I couldn't eat (but were oh so fragrant, like PIZZA!). So I took my break later when there were fewer people around. For the most part, they're all starting to get to know that I have some health issues and that I eat the same foods all the time, but when a dozen or more people are crammed into a room eating pizza and sandwiches and macaroni salad and goodies from BreadCo....I just didn't want to be the only one sitting there eating my little container of pasta that I made the night before. Especially when there are still plenty of people who don't know me or my diet and would ask questions in the middle of the group. I don't like being put on the spot about my body.

So I had lunch later with a nurse who also resigned to eat her own lunch (she's trying to lose a handful of pounds, so she didn't want the junk food.....and boy did her salad look beautiful: greens, peppers, cucumber, tomato, goat cheese, balsamic vinegar....there was a lot going on in that dish!). It was much easier for both of us that way.

And both of my knees and hips were funky today. I'll be so glad when I can get proper braces and supports from PT/OT. I don't care if I look like robocop when I'm done as long as my joints are supported!

I have some writing to do and it's getting late, so I'm gonna peace out.

*flop* And the month comes to a close

Float trip weekend. Weekend of sun and fun and pain and great thanks.

Got up at 0430 on Saturday morning to work out. Felt great. Packed the car and headed for the river. Got there early, then played the sit and wait game. I honestly have no idea why we piddle around so long. But eventually we hit the river. Not the best weather, it was cloudy and a little chilly. And the dog spent a lot of time being a pain in the butt trying to bail from the canoe all day. He loved being out there, but he didn't like being confined to the boat. So he would get antsy every time we passed land too closely.

Sunday was much better. The sun was out and it was beautifully warm. Which means we spent a lot of time goofing around on gravel bars and making pit stops. It's all good and fun until the end of the day is closing in and we're still miles from our take out point. But that wasn't the excitement of the day. No, that happened about 3/4 of the way down.

Scott and Amanda got swept up very quickly and unexpectedly in the current (the river is up and they weren't even letting people on the river for a while because of how quick it was moving). They ended up far to the left whereas everyone else had pulled right. Now everyone was far ahead and Scott and Amanda were losing control of their boat. They got sucked into a massive swift current under a tree root. Their boat went under in the blink of an eye. By the time we (me and my dad) looked back, we were too far ahead of them to get back (the current was too swift to back paddle, but if it was necessary, we were prepared to pull sideways to the bank and run back). So it was just a painfully long wait to see them pop up out of the water. My heart stopped for a long time while the water kept rushing, and their belongings kept popping up out of the tree root and they were nowhere to be found. I'm not sure how long it finally took, but they came up out of the water. Amanda was snagged on the tree and still struggling, but Scott was already making his way to her. Then my focus went to the dog, who we still hadn't seen even after they surfaced. I looked across the river though and he was already making his way to the bank, struggling with the current but holding his own just fine.

The down side? We had forgotten to turn back in a while and by the time we did, we were sideways in a swift rush and another tree root was about to take down another canoe. When we came up on it, we leaned and I felt like just maybe we were going to bounce. But it just didn't happen and in another blink, we were down too. We turned over, pulled our heads out of the water, I grabbed the dog's collar to make sure he was okay (I didn't know if any of us had gotten hurt, but I knew we had to make it to land).

And by the grace of God, there were other boaters on the water. Larger boats with motors instead of just paddles. They saw the struggle and two boats headed upstream for our friends while we pulled ourselves to shore. Both dogs stood and shook off and ran around in a daze while I rushed to catch everything I possibly could (everything was tied down except for my chair - on the off chance we did flip, I knew that one would be a hazard - and things like my sandals, the sunscreen I had been putting on, paddles, and our PFDs of course). We managed to get everything back except for my chair, drink bottle (in the arm of my chair when we went over) and the walkie talkie that was on the front of my rash guard and disappeared sometime during the crash). I had run to catch everything that got loose while my dad started untying things to dump the water. Meanwhile, one of the motor boats had pulled up with Scott and Amanda, both very shaken (and Scott was in the military not that long ago, but this was different, he wasn't going in thinking death could be a possibility or that he might lose his girl....because that's what the situation had come down to for a long few moments there). We put both of the dogs in my canoe and Scott rode with me back down the river while my dad and Amanda rode in the motor boat - we were worried Scott's dog would try to bail and chase him if he wasn't with him.

There was a lot of fear in Scott's voice as we headed down to meet everyone else (our other two canoes had heard the commotion, saw us go over, and eventually managed to pull over) but he calmed down once we were on land and he was with Amanda again (she was shaking and crying). We thanked the guys who pulled us all out and rescued our stuff and hung out on the gravel bar while we sorted through it all. Scott and Amanda lost about $300 worth of gear (fishing gear and such) but knew it could have gone worse. And Scott's birthday is next month, so now we all know what to get him :) ).

Rest of the day was pretty uneventful. Got back, unpacked a little, showered, cooked, took it easy. And today we went down to play in the river near our camp site for a while before we all had to leave. It was a great weekend. Even if I am burnt crispy (never fails....no matter how much sunscreen I put on throughout the day).

Good times, good friends and family, great weekend. And our beautiful flag flew proudly from the RV at our main camp site. What a great memorial day weekend.

And now we're home and have things mostly unpacked and we're taking it easy for the rest of the night.

Hope everyone had a great memorial weekend! I'll be around tomorrow for day one of the month of posts!

sure, it only makes perfect sense

First day back at work in over two weeks (one was vacation, the other was an injury). Clock on at 0653, print my report sheet, and at 0710, someone coded. Seriously, not a great start to the shift. You know there's going to be bad juju all day when that's how it started. (and it was a ball buster of a day, I'll tell you that much)

Plus side, I've never seen a code team move SO quick. That was incredible. I wish I could say the efforts were worth the results: the lady is 89 years old, frail and weak, it took a very long time for her to be revived and she is in the ICU on a thousand medications and breathing via intubation and vent. She probably won't live much longer, and her last days won't be peaceful and happy ones. The crazy thing is that the tech was in there 15 minutes previous and her vitals were perfect. Just goes to show how fleeting life can be. I'm sad for her, because she didn't get to say her goodbyes or die at home or anything she might have wanted. It all ended too fast.

That was my perspective for the day while I worked. That you just have to keep living and enjoying every bit of life like it's your last day. And luckily my optimism rubbed off on a lady who was thinking about giving up, and on a lady who was just a little on the crazy side and confined to her room. We had some laughs today.

And this weekend, there will be float tripping! Everything is ready to go, all we have to do is chuck it all in the van in the morning. And I'm glad dad is driving because 0500 is not my friend, especially on a day off.

Peace out all. Happy Memorial weekend to you!

Let's try something shall we

Starting at the beginning of next month (sneaking up at me at rapid pace), I'm going to try to post every day for the entire month. Just little updates or blurbs or whatever. Because I really do have a lot to say (in fact, I never shut up), but taking the time to update everything that goes on in my life between posts is ridiculous and not happening. But I would like to share with you through my blog. So prepare for Spammy Stacey!

(I'll be starting with an update on my entire month of awesome when I get started, I just don't have time tonight...it's way past this girl's bedtime).

Hope is the thing with feathers - Emily Dickinson

I had the most random fleeting thought the other day. That I was going to bust my ass to get through nursing school this time if it kills me (I've been a student on and off for 5 years, this time I'm going to get in the program for real and haul it until I'm DONE!). And then the thought came that maybe I wanted to be a doctor. That maybe I could get through a medical major and survive it and help others.

When I was young, I wanted to be a doctor. I always wanted to be in a medical field and help people. And from the impressions tv gave me, being a doctor was the best thing for me. Then I got older and realized that nurses spend more time with their patients than doctors do, and that's what I wanted, to be there for my patients.

But then it just grabbed onto my brain and wouldn't let go...the thought that maybe there was a way to be a doctor and still be the one who spends time with my patients. I realize the only way that would realistically happen is to open my own practice or work in a private practice that has more doctors than nurses. And that idea felt shiny for a moment.

I might tuck that in my pocket and see if I still find it there after I finish nursing school.