Thursday, October 20, 2011


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.

Wednesday, October 19, 2011

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.

Monday, October 17, 2011

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.