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!