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....