Let's play catch up, shall we

Been several days since I got the TEDs. Don't really know that I see any improvements or changes to be spoken of. Yesterday or the day before, after I took them off, my right knee hurt. As in, it didn't until they were off. I'm not sure if that was a coincidence or not, given anything can hurt in the blink of an eye with me. But otherwise, I haven't noticed anything major. But, I'm going to keep wearing them daily, that way when I talk to the doc about it, I'll at least have steady info to give her.

The Savella I've been taking for fibromyalgia is doing nothing so far. Well, nothing for pain management. It is, however, screwing up some kind of thermoregulation mechanism in my body to the point I'm about ready to pull my hair out. I can be hot, standing out in the sun, a warm light breeze comes by and I'm covered from head to toe with goosebumps and shivering for no reason. It also seems to make my legs feel weird in the same respect, I have goosebumps all the time if anything touches them or if there's any kind of temperature change (even a difference in sitting and walking). It's really obnoxious.

I've had two of 3 days of orientation/training for the new job. General orientation and clinical partner training both went pretty well except for the part where we had to sit all day in straight hard chairs that were too tall for me and pushed against my hips in an uncomfortable way. The first day, I could hardly walk by the time I left; I promptly came home and slept for two hours, and was still hurting and did pretty much nothing the entire next day (luckily, didn't have to be anywhere). The second day, I took a pillow, and moved around more. Still achy, and couldn't get comfortable. Finally gave in and took a nap just to forget about the discomfort for about 40 minutes and it helped greatly.
Tomorrow, I'm taking the pillow again. But there won't be much getting up and moving around because I'll be in front of a computer all day, instead of in lectures/videos. So that part's gonna suck. But then I'll have Friday off again to relax a little.

Then Friday afternoon, when Matt gets off work, we're driving home to see the grand opening of my mom's business!!!

The tachycardia I've been having the last couple weeks is really concerning to me. Every day I wonder more and more how long I can function with this much discomfort. I think about trying to get through nursing school and nursing clinicals and how I would possibly be able to keep up. I don't think I would. That thought scares me. I feel like I would be disappointing everyone. I've been holding back the pain and discomfort and everything I've been going through for so long that by the time I tell people how bad it is, I feel like they wouldn't believe me. Because I don't look sick and it's all come on too fast, right?
I just...I don't like letting people down. And I don't like letting myself down. I really do want to finish school. And I feel like sometimes I'm giving up too easily. But other times I wonder if I am. Am I really being fair to myself to keep pushing it and having less quality of life if I'm always in pain, and not focused because the tachycardia keeps getting worse?
I know life won't come to a halt while I try to figure this out, and that's fine, but I wish people would stop pressuring me while I thought about it in the meantime. The choices I make are hard. And I wish things were different, but they're not, so I have to think about the future, not just today, no matter how much I wish that were different.

I worry sometimes that Matt got a bad deal. That the girl he fell in love with isn't the girl he got stuck with. I know he could leave if he wanted to, and I tried telling him that once. But even though he loves me, and I know he does, I still feel like it's not fair to him. I'm not the same girl. Just in the last year I've changed a lot. I'm not as energized and I don't like going out to do things or going out late with friends and standing around talking in an uncomfortable room. Because I just don't have the energy for those things. I love to go out and do things with him. But I like planning ahead, that way I can plan ahead for my body too. Having a friend call at 8pm on Friday night when we're on the couch watching TV and ask if we want to grab a drink might seem like nothing. Except that I've already tackled a whole day. I don't have the energy left for a few more hours out with people. But how do I say no? Or even when I head over for dinner and he says we're going to meet some friends somewhere instead. That takes more energy. But....I hate having to tell him no. Because he doesn't get to see his friends much and he likes to socialize, and he always feels like he hasn't seen them enough, and he's a very social guy so he likes to go out and when he doesn't get to do that enough he feels couped up. It's hard to deny that.
It's hard to tell him that I feel like my body is going to implode and everything hurts and I might cry at the very thought of going out.
Or, even if I do have a little energy left, it'll all be wasted quickly, and I won't enjoy myself as much as if we had done something more low-key.
I hate having to plan life, but it helps so much now. And I don't like having to tell him that he has to do that just because of me now. It hardly seems fair.

....I think I should be done purging. That was unintentional. I think I'll go write fic while my hands are feeling good. Then early to bed tonight for an early day tomorrow.

Real quick before bed

It's closing in on getting late. I find it very hilarious that 10pm is late. But considering I didn't sleep much last night (never do), and gave up and got up at 4:30 this morning, I'm just about wiped. So we'll keep this short.

My compression (TED) stockings came early this morning. I ordered non-prescription ones online a couple days ago. I was hoping to try them out to see if the light pressure would help stabilize my joints enough that I could avoid braces/splints. On good days, I don't wear them anyway because they're so uncomfortable and cumbersome. But on bad days when I need them, I hate wearing them. So I'm wondering if this will be an alternative to the good days.
I've also been having trouble with my blood pressure/heart rate. I don't know if I'm starting to develop POTS secondary to EDS, but the last few weeks have been pretty ridiculous. And I've had bouts of severe tachycardia for the last year. A couple dozen unexplained episodes where I jump up to 130 or higher for no reason at all. I had a full cardiac workup in February and nothing was found. We chalked it up to medications/diet/stress. But I don't think that's what it was.
Now, I've been having daily spells of high resting heart rate (90-110) with no discernable cause. I've always had good heart rate in the past. My blood pressure has always been low though because of my size (5'3 and always under 120 lbs means low BP). Since I've been losing weight lately too, I think that might be contributing. But the tachycardia is very uncomfortable. It makes it hard to focus, makes me nauseated, makes me feel faint...all the fun things tachycardia should do.
Non-prescription compression stockings aren't very strong, but it's a start. I figure I'll try these for a couple weeks and see what happens. I may also ask my doc about a stronger pair to see if that helps any.
The good news is that they weren't as uncomfortable as I was expecting. And maybe they'll help prevent the couple of varicose veins that are forming on the backs of my legs. I'm too young to be getting those already.

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Did lots of running around today. After much hassle, I got the doctor's note I needed for my new job. I went to my rheumatologists office and picked it up and hand delivered it to the HR department to make sure they got it. Because otherwise, I was looking at not starting for another 6-8 weeks. And that would suck considerably. So now I'm set. I have general orientation bright and early tomorrow morning. All day. Not the most ideal way to spend a Saturday. But hey, I'm used to not having my weekends anyway ;P

Got to see my guy for a little while tonight. It's hard not getting to see him as much now that school's started. But hopefully we'll get to spend more time together on weekends. He was very whiny when I had to leave though. Because it's Friday night, the night he actually gets to stay up later (even though he was falling asleep on the couch) and I had to leave because I had to start getting around for bed. It sucked. But it is what it is. As long as we're seeing each other at least once a week, we'll survive. Hopefully once I get a schedule and get into the swing of this new job, we can see each other a little more again. I miss him.
And I reminded him that once we're married, we'll be in the same house and we can see each other every day. Even if it's just to sit in the same room while we work :\ I still take this over the long distance crap any day.

Well, I need to hit the hay. Morning is coming whether I sleep or not. And I'd really like to sleep. Night all!

sigh number two, or, the week is finally over

So I had my consult at Barnes. The surgeon was good and had some good ideas and agreed that a fundoplication was good to have on the list. But he wants to run another test first. Since my 24 hour pH monitor last year came back pretty normal (either because I was having a good day or my pH really is close to normal), he wants to see if I'm having regurgitation/reflux of non-acid stomach contents. There's a test similar to the pH monitor to check for that. They're supposed to call and schedule me for that.
He also said there was something called visceral hypersensitivity. It's entirely possible that my body doesn't tollerate a normal amount of acid and is breaking down and reacting to what would be "normal" to any other person. He said this can be treated non-surgically, with things that I haven't tried yet (since we weren't looking for it before). If that's what it is, that would mean one less surgery, but a lifetime of some kind of pill/treatment and probably another diet change. So both have pros and cons.
We'll see what the impedence test shows.

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Saw grandpa after my appointment. And I couldn't have been happier when I walked in and he recognized me immediately. He was really doing much better than I was expecting. He still has a large clot in his carotid artery to worry about, but is much more stable now than he was before. He is completely blind in his right eye (I thought she said left before)....no light, no shadows, no movement, no nothing. It's just gone. And he has some facial paralysis. He has to work to keep his eye open and mouth closed (grandma had fun reminding him every five minutes to do so, payback after years of hearing the same commands after her stroke). But the paralysis on his left side is improving. He can bring his hand up to touch his nose, he was scratching his right shoulder with his left hand, playing with his IV tubing with both hands (the nurse in me was watching that a lot closer than the rest of the family....that takes a LOT of fine muscle coordination....I was really pleased to see him doing that, just threading it through his fingers, back and forth, and not dropping it), he wasn't moving his left leg quite so well (the right one was doing fine), looked like his toes were drooping quite a bit already, but he's going to be getting a lot of therapy, so I pushed my worries back on that one. He still doesn't have bladder/bowel control yet, but he'll start to get that back when he starts moving around again. The more he gets up on his feet, the better his bladder will begin to function. They took him off thickened liquids while we were there (he's been moved lower and lower on the scale the last few days), changing him to regular liquids with 100% supervision and prompting to tuck his chin, which he was doing very well without any choking trouble.
It was just so great to see him doing so well after such a traumatic CVA. It was great to see him cracking jokes and making light of the situation. He's still worried whether or not he'll get his driver's license back or not (I really don't know if they'll give it back to him if he doesn't regain his sight in that eye, given his age and 2 CVAs), and he's worried about his leisure activities, but we promised him we'd teach him how to shoot left handed and that since he usually only crappie fished anyway, he didn't need to cast a rod like a pro anymore.
He'll be okay. Surgery is on Tuesday. I pray that it goes smoothly and uneventfully and that his recovery will be just as quick as it has been going. I really think he's going to be just fine when all is said and done here.

I took a short nap before work when I got home that night, and woke up to a voicemail from my little brother. Called him back and he told me his girlfriend was pregnant! OMG!! I can't believe it!! It's still absolutely amazing to me! They've got a lot to figure out, but they'll do this. They're really excited and happy and I'm happy for them!

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Thought I was finally going to get some sleep after two days of running around. Even took a sleeper to make the transaction complete. Then my body stepped in and screwed me over. I woke up a lot. It was a very unrestful sleep. And I woke up hot and in pain and in a drug-induced hangover because I didn't get to sleep it all off. I'll be so glad when I start sleeping nights again, because I really think I'll sleep much better then.
I woke up with HORRIBLE jaw/facial pain Thursday. That was probably the worst my mouth has ever hurt like that. Had I not already been in a sleeping pill haze, I would have gotten into 'the stash' and taken something stronger. I hate narcotics, I hate taking anything at all really (even tylenol on a regular basis), but sometimes, pain meds are necessary. That's what I have them around for. Darvocet and Vicodin, emergencies only.
I also think having a different job will help. Because my pain has really been minimal this week since I've been on the "light" hall. It's much like what I'll be doing at the hospital, more time on my feet, but less straining and pulling and wearing and tearing on my joints. Which I'm looking forward to.

Got home from work yesterday morning and had a small bowl of cereal. I have to eat something when I get home to keep my blood sugar from dropping while I sleep and because I need food on my stomach with a handful of morning pills. But 5 minutes after I ate I felt like crap. My stomach has been seriously hating on me lately. I think I'm about to have another go round with IBS. The rheumatologist gave me a new prescription for IBS meds to try if I want to (if that's what I'm about to endure), but what I have works pretty well for me right now, so I think I'll stick with it. No use in messing up a good thing.

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Went over to Matt's last night. At first I wanted to go out and do something since we hadn't seen each other in a while and it was so nice out (75 and sunny and beautiful), but since I still wasn't feeling well and he'd had a crappy day too, we opted to stay in. We bummed around, went on a grocery run, made yummy food, and bummed around some more. And fell asleep cuddling on the couch for a while, because that's the best end to any night. What more could I ask for?

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I just downloaded I Spy on my iPhone....I'm definitely going to play that for a while before I hit the hay!!!

*flump*

I hate coming home from work knowing I have to shower because I'm gross, but don't have the energy to stand in there for 15-20 minutes (too much thick hair just adds a whole lot of time to it...makes it even worse).

Plus, I subluxed my right shoulder at work last night. I've never done that before. My issues have always been with the left side. I thought I had more time before the right started giving me hell. Guess not. It hurt. And there were witnesses. They got to hear the sickening pop as it settled back in when I moved my arm wrong. Fail.

Okay....getting off my ass to go shower now so I can go to bed. Which is where I really want to be.

.....though sleeping in my chair would feel so great right now too....

*motivates, moves*

Love it when that happens

Had a good night at work last night. Worked with a good crew, full moon was still making people crazy, and I didn't have an insane amount of pain. My hands/fingers were giving me trouble by the time last rounds/get ups came around and I kept fumbling with things, but the pain was minimal.

Also turned in my resignation letter and two weeks notice last night! YAY for a new job! I can't wait!! I really hope working at the hospital will be better for my body. I think it will be. Certainly can't be much worse than where I'm at now.

Got my new chair today. Nothing fancy. Just a little video rocker that sits on the floor. But it means I can resume sitting on the floor. Comfortably. Or, more comfortably than I was. My back is supported and my hips are more supported than I thought they would be (moreso than they are just sitting on the floor), and it takes some of the pressure off my ankles (because when I sit on the floor, I tend to sit on my feet). It's much more comfortable and less strenuous on my body. I'll take that for a $25 chair.

Off to work for me........

FREAKING FREEZING!

Stupid Savella is really giving me thermoregulation issues. Hot flashes with goosebumps one minute and freezing cold the next. It's summer, and I'm currently curled up with a fleece blanket. WHY?!?! Sheesh.

Had a really bad pain day at work last night. Every movement (even breathing) came with popping, snapping, and cracking. Every. Single. Movement. I was so tired by the time I got home. I gave myself a quick sponge bath (got the essentials and the gross stuff from work off) and crawled into bed. Woke up at some point with my elbow all but out of place. That hurt for quite a while, then I went back to sleep.

And now I'm up, had food, ran errands, made supper for work, and I have to do my write up for work. Then maybe do a little free writing. Maybe.

Another day, another dollar

Work was good last night. Amber's going away party. Not gonna be the same without her there, but I'm glad she's doing something that will give her flexibility for school and something she likes more.
And in the meantime, we have a new orientee.

Me and Shae got most of my hall up in pretty good time this morning. And one of the girls brought her dog in for the day which made MC spring right up out of bed! So cute. Those little ladies just loved having a puppy to care for for the day.

I slept in a little today, which felt good. And I think it was because I was actually moving around in my sleep more. Not my old flailing and tossing and turning like a fish out of water (I think I've outgrown that, actually). But just moving around and getting comfortable more often. Which I'm not usually doing. I wake up sore and stiff and in pain because I lay in one position too long. But today I didn't. It felt good.
Beary Long was also on my butt. Don't know what that was about. I don't know how that bear ends up in the places he does.....

My thumb is feeling better after catering to it more last night at work. I was careful to keep it tucked more when I could and use the heel of my hand rather than my fingers/thumb when I absolutely had to.
My hip is starting to bother me though (like, just in the last 30 minutes, really aching and feeling like it's not right). Hopefully it'll chill out by the time I get to work.

Emailed K back. She's really been a great ally and an amazing friend through all of this. It's great to have someone to go to who's been through the chaos of a chronic pain problem. We have a big way to relate to each other, and bounce a lot off each other that we can't necessarily run by just anybody, no matter how much they say they understand. I'm really glad I have her to talk to.

I need to start getting around for work so I can sit and write for a little bit. Because I would really like to crank out a drabble tonight.

Short, sweet, to the point

We will not be taking the meloxicam any more. 2 hours after I took it last night, I was SO nauseated, dizzy, lightheaded, and had a headache. I had to take a nap before work to make the nausea chill out a little, then took meclizine (antiemetic, the least drowsy kind I have around, still sedating) as soon as I woke up to keep it at bay for a while.
There's a chance that my body could get used to it, but I'm not willing to try. At least not right now. I can't deal with a bunch of new meds and side effects like that. If I have to take more meds to manage the side effects of the first meds, I'm not doing it.
I'll call the doctor and tell her that one isn't going to work. But the Savella still seems to be doing okay, aside from the hot flashes.

I subluxed my thumb BAD last night (really can't believe it didn't dislocate). And now it won't cooperate. I can't move it and keep it in place for the life of me. I feel like it could jump out of socket any minute now. Lovely. Hopefully it'll stiffen up after I sleep for a while.

Which is where I'm going now. So very very very tired!

Fabulous weekend, time to start a new week!

Me and Matt went camping this weekend! So much fun!! Got there after dark Friday night, set up the tent by lantern light, then put the lantern out, sat in the field and watched the stars. And boy were they beautiful!!! Being outside of the city really made the sky light up! And there were more shooting stars than we could count. And all so big and bright and close! Marvelous. We sat there and talked for a couple hours and went to bed.
Woke up to a little rain Saturday morning. No big deal. It was nice and cool. Went to Elephant Rocks state park to do some climbing! I've never been there and Matt hasn't been there since he was a kid, so that was a lot of fun. Even if I did hurt all over. We had lunch while we were there and climbed around some more before heading over to the Shut-ins to climb some more and swim.
I didn't realize that the shut ins were that much intense climbing in the water, so my footwear was not at all appropriate, making my job that much harder. But it was so much fun to play on the rocks and splash in the water and swim around. And when we finally got to some pools and waterfalls where we could sit, it felt so great! Took all the stress and pressure off all the aching joints in my body!! But we had to do more climbing and hiking to get out of there and back to the car, so I was beat by the time we sat down to eat a snack when we got back. My hands are very bruised up, and I have scratches and bruises all over, I dislocated more fingers and toes than I can count (usually the same few over and over again), and everything just aches. But it was worth it. Because we had fun. I'm definitely going to need a lot of tylenol for work tonight, and I'm not even going to wait for last rounds to put my braces on (knee and wrist for work)...those are going on to start the night.
And it certainly didn't help that we didn't have enough padding to sleep on, so my body was not supported at all. I was just laying on all kinds of pressure points and sore spots all night. I woke up all kinds of stiff and achy and sore both mornings. We'll have to buy better sleeping gear for next time.
Woke up to thunderstorm this morning, but not enough to flood us out - I kept waiting for the sirens to go off - and then packed up our stuff and left. My gut is giving me fits because of something I ate that it didn't care for...cheese on my sandwich or super-flavorful Tomato-basil potato chips, I'm not sure which, but IBS!fail is the name of the game right now.
Everything is pretty well unpacked and put away. I laid out all the wet stuff when I got home to let it dry, so I just need to roll the tent back up and stuff it in the bag and put everything back in the camping tub that belongs there. And put the tub back in the storage room.
Laundry will be done tomorrow.

After my doctor's appointment. I see the rheumatologist tomorrow. I'm nervous. I still don't know what I'm going to do if she tells me she doesn't think I have EDS. I'm not a doctor, but it just seems to fit. Considering nobody else has been able to give me a better answer, I'm willing to go with what fits now. I know there's no cure, so having an answer doesn't mean all that much to the naked eye. But having an answer means a lot when you've known for so long that something was wrong that you just couldn't put into words for anybody else.
I really really hope this goes well tomorrow. I just want answers. That's all. I know Matt doesn't understand still, he had to ask me a couple times why I was "hoping" this is what I had or why I would "want" to have this. But that's not it. Nobody wants to be sick, but when you are, you want to know what's wrong with you, you want a label to slap on it. It makes it easier to explain to people when you trip and fall over all the time, when you're tired for no reason, when you hurt and ache and crack and pop like an 80 year old, when you want to scream because you're in pain but nobody knows because you never talk about your pain, because there's never been a good reason for you to hurt....

I might need a little extra prayer tonight and tomorrow. That's what I'll work on.

I want a brownie

Random, but I do. I may make them for breakfast later :)

Got pulled last night at work. Wasn't too bad. I knew it was coming soon, which made it more bearable. Had a book with me and mostly just kept to myself.

Really enjoying my book. I need to start reading more. Maybe once I get my new phone I can download some ebooks as well. But good old fashioned page turning is the best. Especially since no matter how much I think I'm going to write at work, I never do. Between my hand not cooperating or the muse misbehaving or my paranoia that other people might be reading over my shoulder. So taking a book with me is good.

I ordered me and Matt's phones a couple days ago. And got the numbers the next day. They should be here Monday or Tuesday. I'm so excited!! I can't wait to give it to him! I'm so proud of him! He deserves something nice for all the hard work he's done. What a great man!!

We went to the Muny tonight. Saw Footloose. It was good :) And Matt liked it :P He wasn't sure he was going to, but he did. I'm glad too.
We were kissing on the couch when we got back to his place and my jaw kept popping. After 30 minutes, when I said I needed to get home, my jaw was locked up and popping and hurt so bad. I really really hate my joints. Not going to stop me from kissing my man, just frustrates me.

The spot on my heel is....slightly better. It hurts, and it bleeds, and limping on it makes other things hurt. But that's what happens when you take a huge chunk out of your foot.

I really need to get back to my search for camping locations. No more procrastination. ....unless the brownies continue to call my name....

Good has to outweigh the bad. Fact.

Let's start with this fact: I'm a picker. I used to bite my nails, I used to pick at them, used to pick scabs and dry or peeling skin and anything else that was there to pick and pull at on my body. With a lot of mental focus, I learned to stop doing this, because it's all very bad habits, I know this. But once in a while, it still gets the better of me again and I'll catch myself messing with a bad fingernail or dry skin on my hands or feet.
A handful of years ago, I had a REALLY bad patch of dry skin on my feet that was getting on my last nerve. I put socks on my feet, and fitfully went to bed. I woke up with raw, bleeding feet the next morning. That's right, I picked at them in my sleep. To the point that I couldn't walk for a week. I had a nurse wrapping my feet every day and I had to soak them to keep them from getting infected. It was awful. That was the worst week of camp ever.
I'm very good about lotioning my feet now so that that can't ever happen again.

Except. It did. Not nearly as bad as before, thank God. But I have pulled a sizeable chunk of skin off my heel. It's bleeding and raw and so very fragile and it HURTS! Work is going to suck tonight.

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Matt starts work tomorrow!!! He has lectures and seminars and paperwork from tomorrow until the first day of class. Boring stuff, but necessary. And it'll fly by. I'm just so excited for him! I can't believe he's finally getting his class room! He's worked so hard for it!
Even though money is a little tight right now, I'm going to get the gift I originally intended to get him. Because I can't think of anything else that he would like as much, and I think he really deserves it. I'm so proud of him!
So I have to make a couple calls tomorrow to make sure I can get that purchased and set up in the next couple weeks :)

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The new girls at work are talking about leaving as soon as they get their certifications. Pardon me while I happy dance. WAHOO!!!! Things would be so much better without them. That's all I can say. Even now that they're trying....a little....they're still not in it for the right reasons and just don't give it the right effort or time or care and just don't see the bigger picture. At all. They drive me crazy (not just me, they drive everybody crazy). So, if they want to leave, more power to them.

I really need to stop rambling on here and get to work. Like, now.

Good days

Went to bed around 8:40 this morning, woke up around noon with a sharp stabbing pain in my gut. Sleep won out the battle to investigate it further (I remember mashing around on my belly a little to feel for any over-sized air bubbles, but those don't usually cause stabbing pain like this), and I woke up again at 3, mystery pain gone. Such is the story of my gut.

Got up and around, ran a few errands and did all my grocery shopping for the next 2-ish weeks. Then Matt came over :) And he had flowers. For no reason at all :) :) :) He got them at the farmers market yesterday :) He's way too sweet for words!!

After supper, we bummed around for the rest of the night. Watched some Bones, colored (because I'm silly like that, and he goes along with my silly), and just layed around talking. I like the talking. A lot.

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The pinched nerve in my neck is doing better. The pain was working up into my skull again at work last night, but today it's mostly in my jaw, and a little bit in my neck and shoulder. Still popping tylenol to keep it comfortable, but it's bearable.

....still makes my neck pretty stiff/sore to look up at Matt for any period of time ;P

Better days

I was exhausted last night, opted to sleep at night (mixes up my sleep habits for work, but I sleep better at night). Had to ditch my wedge pillow halfway through the night because it was making my neck/shoulder more uncomfortable.

But I seem to be doing a little better today. Still aching, but less nauseated (which helps SO much). And tylenol is actually helping the pain today.

Last night when Matt came over (he brought me risotto from a super yummy Italian place on the hill) he said he used to get something like this from boxing. Boxers and football players call it a 'stinger'. Basically just a pinched nerve. Which is why it wasn't going away like a kinked muscle. Though I still don't know how I did it in my sleep. I'm a wild sleeper though. Especially because I can't get comfortable on that wedge. I'll be so glad when I can be rid of that thing.

At any rate. The nausea is less (in general and when I move my head) and the shooting pain in my skull is less. Still a lot of aching in my shoulder and neck and jaw and ear, especially when I eat (chewing and swallowing and subsequent choking and coughing works a lot of still-irritated muscles).

Hopefully work tonight won't be too bad. I was planning on going to urgent care this afternoon and getting it looked at, but I think I'm doing well enough that I don't need to now, especially if it's not something they can do anything about. So I'll just keep taking tylenol and icing it at work tonight, and then I have tomorrow night off again to rest.

Plenty of yummy risotto and more Friends (and a nap later before work) will definitely make this day good :)

Dear neck pain, I hate you.

I woke up with a stiff neck yesterday afternoon. I stretched and twisted and it didn't loosen up....I had kinked it up while I was sleeping. No big deal. Everybody gets a crick in their neck occasionally. And it always goes away when I go to work because I get to moving around and it loosens it right up. Wonderful. No worries.

Except that it didn't get better at work last night. It just kept getting worse. It spread all the way up into my skull (not a headache, still just musculoskeletal pain, but in my head now, as well), and my jaw, and still neck and shoulder where it started. I was so bad that I had to go home from work early, my charge nurse insisted on it, she didn't think I was going to make it any longer.

Sleeping didn't help any either. Hot shower when I woke up felt good, soothing. But I'm still in pain. Can't move. No range of motion at all. Over the counter pain killers aren't doing much, I'm about ready to move onto the prescription stash. Which is fine, since I called into work...there was no way I was going to be able to work tonight.

I'm hoping if I just rest it and continue to mildly stretch every so often I'll be okay tomorrow. Otherwise, I'm going to find a clinic to get an x-ray. Because this is unusual pain. For me, for this location, take your pick. It just doesn't seem right.

For now, I've found a semi comfortable position, I've got a snack, and Beary Long squished under my arm. And Matt is bringing me something for supper later. And I've got 2 more episodes of Friends on this disc before I have to get up ;)

Pain, pain, go away

It was so bad I could barely stand by the time I left work.

And my balance has been really bad lately. Especially at the beginning and end of my days (not so much morning and night, because that's not where my day distributes). I almost fell standing from my chair at work this morning....in front of the nurse. I had been complaining that I was really tired all night, so I think she brushed it off as that, but it wasn't. At least not completely. And by the time I got home, I couldn't walk at all without having to hold onto something. Showering in the morning when I get home is always frightening....collecting everything I need in the floor of the tub and sitting while I shower is very helpful. Certainly don't have as far to fall that way :P

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Hmm. I really wish I had more molasses cookies. I just finished the last one. But I don't have another day off until the weekend. So I won't be going out until then. Guess I'll have to make do without them.
....I have granola bars with chocolate in the meantime ;) Now that's the sunny side of life!!

Weekend of win!

More like week, but who's counting?

My best friend got married over the weekend. It was INCREDIBLE! The ceremony was beautiful, she was even more beautiful, and there was more love floating around than anybody could ever take in! Fabulous!

Thursday morning, I went to the doctor for a follow up on my meds and stomach issues. Gonna stay at my current dose of Topamax (50 mg twice a day), since my memory isn't as sluggish anymore and the cobwebs in my brain are starting to clear. Still having some mental delays and trouble coming up with words sometimes. I'm hoping it's just a matter of more time, because it's beyond frustrating when I can't come up with normal words in very important situations (trying to give report to a nurse when I can't generate a word or phrase is ridiculous, plus people look at you like you're nuts). I'm having headaches again, but not like I was 3-4 months ago, and not full-blown migraines. At this point, I'd rather deal with weekly headaches than trying to switch meds. That's just a scary thought to me. Knowing what I went through to find one that worked the first time....
We also talked about my stomach and the conflicting consultations. It came down to me needing to go in and see the specialist. Because just looking at my scans means nothing when there's not a patient attached to it. Which I know and understand. So I called and got an appointment made as soon as I got home.
I went to Matt's after the doctor, showered, and slept. We had supper and left for KC. Got to Kat and Adam's before 10, chatted for a while and went to bed. (our air mattress deflated halfway through the night and Matt jumped ship lolol)

Friday, we drove from KC to Omaha. Talked, rested, rehearsal, dinner. Picked girls up from the airport, went to buy alcohol and went back to the house for a mini bachelorette party (there were 3 total for this wedding, because of the widespread geography). 10 girls packed into two rooms (we were staying at the groom's family's house, girls upstairs, boys in the basement, parents and the rest of the house in between), it was a blast. Went to bed around 2.

Saturday, people started waking up at 5 (that's when I heard the first shower). I woke up at 6:30, went to wake the bride up at 6:45 (squish!hug!kiss!), we all quickly got ready and headed to breakfast. Amazing breakfast (country kitchen with fresh ingredients and beautifully made food). Hair appointments started at 9. We got a little rushed during hair. There were several of us with very thick and long hair who took longer than expected, but we still had the bride and all but 3 of the girls back at the church by 11:15 (and the bride had done her makeup at the salon while the others were getting their hair done). Got the bride dressed, talked to the photographer, and started taking pictures. Just before we started, the tears started. Everyone was dressed, and looking at the beautiful bride in her white gown, and it just got real; it was pretty awesome. It hit everyone right then. Prep and pictures (LOTS of pictures) for the next couple hours. While the bride was doing family pictures, the bridesmaids managed to sneak a 15 minute nap in the bridal room (at that point, it was 3pm and we were running on no sleep, and no food or drink since breakfast -a granola bar and sips from the water fountain don't count - so we were exhausted). At 3:30, the whole bridal party closed themselves in their rooms (the boys were down the hall), and waited. A great prayer and a few more tears and we walked to the sanctuary to line up. The ceremony was beautiful. And my best friend, the goofy girl I love so much, was dancing around on the altar while she was saying her vows. She dances around when she's happy or excited. The fact that she was in a wedding gown did not change that. She reverts right back to that happy little girl! Me and the other bridesmaids all laughed. After vows, a kiss, bubbles, church cleanup, and more pictures, was the reception! A fabulous party! Great speeches, great food, great fun time!!! They made $150 at the dollar dance, my boyfriend was talking to my best friend about rings while they danced, I danced until I hurt (that didn't take long)....dancing was a great part of the night! Bride and groom left around 10:30, we jumped in on the cleanup shortly after. Bed around 12:30 or 1.

Sunday we woke up and had breakfast and waited for the newlyweds (as I expected, they were much later than they planned *nods approvingly*). Talked for a while then they opened gifts. Then everybody started heading out around noon. Very long drive home. Nearly 9 hours in the car....every joint in my body hurt. Hurt. Hurt. But it was worth it, for the wedding, it was worth it. And me and Matt passed the time and made lots of good distractions along the way.

It was all so fabulous!

Today, after much sleeping and unpacking and cleaning, I went to the gastroenterologist. We talked for all of 10 minutes before he was recommending surgery. He's going to send me to the university hospital for a consult. There's a surgeon there who has done the procedure (called a laparoscopic nissen fundoplication...it's an anti-reflux/hiatal hernia repair surgery) a lot and has an incredibly high success rate with it. Even though it's 40 miles away (there are 3 hospitals within 10 miles of me), this doc would be better. So I'm hoping I can get an appointment for a consult soon. They're going to call me tomorrow.
I was hoping to have this done before Matt had to start back to work, but it doesn't look like it's going to happen. He has to be back at the end of next week to start prep. But if I can get it done near the end of a week, my dad could stay with me for a couple days (I hate for him to have to sacrifice his vacation time) then Matt could stay with me over the weekend. Hopefully I won't need much baby sitting after the first 3 days (it's the narcotics and lack of eating that do me in).

Anywho....I'm sure there will be more when I find out about dates and times and everything revolving around my stomach. And I still have that rheumatology appointment to deal with in a couple weeks as well. [A nurse told me today that I'm too young to be having joint pain, in reference to the hinged knee brace I was wearing. I absolutely hate it when people say that. I realize I'm young, I realize I shouldn't be in pain so much for my age. But that doesn't change the fact that I am. Saying things like that is just stupid and makes me feel bad.]

For now, just more days in the world.


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And praying for a friend and her family. I think about everything I have gone through with my health and what it costs, even with insurance. Now they're going through something terrible, and they have no health insurance. I can't imagine ever not having health insurance for that reason. But I hope they can stop worrying about their finances for a while and just focus on their family and mending fences. Because things are very fractured for them right now.


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Live, love, and prayer all around.

PMS fail

I started my period a few days early. Which is fine, I kind of wanted that. I don't want to have to think about messing with it during the road trip and wedding next weekend (I can't believe the summer flew by so fast!!! my best friend is finally getting married!!!). But. Now I feel absolutely crappy. I've been nauseated for days as it is. And the wicked first-day cramps have set off a small bout of IBS. Not bad enough that I want to subject myself to IBS meds, because I really hate being snowed. So my options are pain, nausea, cramps, the works, or drug-induced zombie-state.

Fail. I took Tylenol (my friend as of late, sorry liver, you have to deal with it), and made myself eat something, much to my stomach's dismay. And I feel slightly better.

Chatting with friends and watching Friends definitely helped too.


I'm trying to do some writing too. The muse finally came back to play. But my hand is having none of the pen and paper action. The muse is not quite as pleased with the computer....she's old school tonight I guess. But I'm making it work. Because it's either type or keep the plot bunnies caged away until my hands are less achy and I'm off work again. Likely that neither will happen any time soon.


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Time for some ranting. Going to keep this short and sweet because I'd rather be writing, but I know me, I'd like to have my thoughts down.
I was trying to get a referral to the GI doc and surgeon to get my gut taken care of before I switch insurance (at the broker's suggestion, as he thinks it's unlikely I'll be accepted to a new plan with a pre-existing condition, or they just won't treat it for 12 months if they do take me, I don't like either option) and before Matt has to be back to work. Seemed like a good idea in theory. Until the GI doc here said that my scans don't even show that I have the hernia that I was diagnosed with. I have no idea how that's possible. There was a lot of phone tag and relaying messages through the receptionist at my GP's office (I wish I could just talk to the woman). But basically, they say there's nothing there and certainly nothing that would need surgical intervention.
WTF?!
Since I was scheduled for surgery for this last year, I'm more than slightly confused. The only reason we didn't go through with this surgery was because I seemed to be doing okay after the gallbladder surgery. But that changed and now I want to go back to the original plan and have the anti-reflux surgery. I certainly wouldn't want surgery if it wasn't indicated, but I can tell you for sure I'm not healthy. The amount of Prilosec and Tums I take in a day, along with my diet can vouch for that.
So my GI doc's office is supposed to be faxing over notes and records, as is my previous surgeon. And I have an appointment with the GP on Thursday. Matt is insisting on going with me. And I'm very glad. Because I'm tired of trying to convince people of this. I'll be happy to let him. We both know my life would be better if I had less reflux on a daily basis. If I could eat even semi-regular foods once in a while, if I choked less (23 year olds shouldn't be choking at all, certainly not on a regular basis), if I didn't have to take a butt-load of meds to feel fairly functional (just from a gastrointestinal point of view...there are other meds on the list), if I didn't have to sleep with the head of my bed up on risers to slant it and a wedge pillow to incline me even more (because I refuse to still be using that damn wedge after I get married!!!). This is not normal, and I know it's treatable, likely even fixable. I'm fine with having to modify my diet for the anti-reflux surgery if I have to, if that's all I had to deal with. That would be one thing to make me comfortable. Not ten thousand. And those don't even work half the time.
We'll see what the GI doc's notes say and what my GP has to say at my appointment on Thursday. And I will try not to worry about it too much after that.
Because Thursday, I'm going to go to Matt's, shower, sleep for a while, and hit the road. We're going to have 4 fabulous days off together to see my best friend get married!!! I can't wait!!!


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For now, I go back to feeding the plot bunnies and entertaining the muse.