Week in review

I spent a week in the hospital. The only time I've ever been admitted to the hospital over night was when I had my heart fixed when I was 3. This was an experience for me. I went to the ER for the 3rd day of a migraine. When they tried in vain for hours to relieve my migraine, the finally admitted me to the general med/surg floor. They didn't have a bed open on neuro, otherwise they would have stuck me there. However, the two are on the same physical floor, so should I need anything, neuro ICU was right down the hall (heaven help me if I needed neuro ICU).

Nothing worked in the ER for my migraine. I was very dehydrated, so the fluids were good, but otherwise, all they gave me just made me high and dopey. When I was admitted, I was given steroids and xanax (about the only thing we hadn't done in the ER).

I had no idea that what I thought was going to be a 24 hour stay would turn into a week. I had scans, all clear (we did revisit a small cavernous hemangioma - a benign blood vessel tumor - that we've seen before, and it still appears just as harmless...we figure it's been there since birth, and still not worried about it). I had lots of meds. Eventually, we retried the demerol that didn't work in the ER (because it has worked for me in the past) and it did start to take the edge off. That was wonderful. Then I had a day of stomach pain. We thought that was in part due to constipation (along with steroids and my previous stomach issues), so I got more demerol and laxatives (I take miralax daily, but since I had skipped a couple days and been in bed for a couple days, it was time for a suppository). The next day, stomach was better, but headache was blaring again. I think that was the day we started to revisit the idea of trying an IV infusion of a drug called DHE (migraine sufferers have heard of this, it's not a common drug). It took until late in the day before we got the order for it because the doctor wanted to get it right (she wanted to consult with another neurologist and make sure that it didn't have any contraindications for my preexisting conditions). I got the anti-emetic ordered as a pre-rec (which made me a little agitated), then 30 minutes later I got the first dose of the drug (it was supposed to be a 1/2 mL dose, then 1mL an hour later, then another 1/2 and 1 mL in the morning). 30 minutes later I was vomiting and had diarrhea. Diarrhea I can deal with (though it did suck that the toilets were up high and my feet didn't reach the floor, makes the cramping worse when you're in an uncomfortable position). But vomiting....oh, I just can't. With the EDS, we've studied my gut pretty extensively (not actually in regards to EDS, but now I know that's where the issue lies) and I have very slow GI motility, spastic and sluggish esophagus, hiatus hernia, all things low in peristalsis. So I never vomit. Because my body has a hard enough time moving food down the right direction, much less forcefully sending it back the other direction. I haven't vomited in years. That was painful. And scary. I couldn't breath. Because the food that came up was not even close to digested (I had eaten over 4 hours previous)....it was barely more than chewed. And my body didn't forcefully expel it like it does for most people. It was slow. I really could not breathe. And I was very worried I was going to aspirate. I was so glad it stopped when it did.

Yeah, I'm dwelling a lot on vomiting, but I need to get this out of my mind because it scared me. It was painful and frightening and just.....a lot. Luckily, my nurse was cool with giving me my bedtime meds early (there were both xanax and klonopin in that cocktail) and I was eventually able to get some rest.

After that, I declined any new treatment. We had run the gamut. I decided that my body was fighting off so many medications that it was time to just let it run its course. So all I took were my PO routine meds, the ones I had been taking routinely, and declined anything extra for pain or nausea. Even though I still wasn't feeling 100%, I was finally able to go home, migraine still lingering (we think the steroids may have helped some), very weak and tired.

I went into the ER on Monday morning and went home on Saturday morning. That was a long week. But I have to say, I was well cared for. From the second I got there, everybody was remarkable. I've been in the ER there before (for tachycardia) and they're a great team no matter what's going on. And all of the staff of the floor I was on were just wonderful to me. My nurses were just fabulous and I couldn't have asked for better from them. And the techs support staff and everybody from the bottom to the top of the ladder were all so great to me. Everyone is important in a patient's care. I preach that every day, but it's much more meaningful after being a patient. Especially for a week.

And the doctors were incredible. My admitting physician was well enough. She came in to see me daily. But it was my neurologist who I absolutely loved. I had a consult sheet to call her, but with things that had been going on with my pup, I hadn't gotten around to it yet. But meeting her was remarkable. She was there the hour I was admitted. We went over my history and talked about EDS and fibromyalgia and possible course of treatment for the next day or so and she was back early in the morning. She had talked to a couple of my specialists and done research on EDS and fibromyalgia all in conjunction with migraines, the treatments I've tried and the treatments we were planning to try. She wanted to let me know that she didn't want to do anything that might complicate my conditions further. I was so impressed that she would do all of that, as busy as she was. This is one very dedicated doctor. Each day, whenever she had something to talk to me about (she came in every day, usually early), she gave me the regular info on whatever it was, as well as what she could deduce based on findings for EDS and fibro (because neither have been researched greatly with a lot of the treatments we were looking at). I was just blown away. And she was constantly consulting with other doctors to make sure she had all of my bases covered (she called the rheumatologist and GP and gastroenterologist all daily to make sure there was nothing that would be compromised in any of her or their treatments). My props go to her. I cannot thank her enough for what she did for me this week. My gastroenterologist was also wonderful. He was in to see me after my second day when my stomach problems started setting in (even though he had been on the phone with the neurologist a lot). He made sure that we were keeping my stomach protected and that I was preventing any further problems from arising (because one problem I had was constipation from skipping my miralax too many days...I don't take it every day, and usually not even a full dose), so he wanted to make sure that I was staying ahead of the game, that I was covered for nausea and pain control if I needed it (I had been laying off the miralax lately because I was having IBS related cramping...very uncomfortable). Just the fact that he was in to see me and address any concerns I had was very comforting.

I plan to send cards to my doctors and to the floor I was on for all the nursing staff. I work in that hospital, just down the hall from where I stayed, but I have a very different perspective now that I've been through that. And I am so very grateful for the wonderful people that are employed there. I think I wouldn't have been as well off if it hadn't been for them.

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All that said, we still didn't pin down my migraine. It went down in severity. But it never went away. It has been moving all over and the quality of the pain changes constantly. I'm not sure what to make of that. I've never had a migraine like this one. My stomach is doing better though. I'm eating better today than yesterday. And I think with my last dose of steroids tomorrow that will help the problem greatly (though I will stay on the acid reducer for a couple more days just do be safe). But the migraine is still there. And we're not sure why. All the imaging looked good. Blood work looked good.

The neurologist and I have decided the next course of treatment is Botox. It would be about every 12 weeks, as a prophylactic, hopefully to replace my daily Topamax (which isn't working well at all anymore). And I'm also going to try to find somewhere to get acupuncture done at least semi-regularly. I realize I have to watch my expenses, but pricier prophylactic treatment is still cheaper than a week in the hospital and another week off work after that (I'm not allowed to go back until I follow up with the neurologist in 1-2 weeks, I'm going to make it 1 week, because I need to get back to work, and I think I'll feel better there anyway).

So. For now, I'm bumming around. I'm still weak from a week in bed. (though I did notice that I didn't have single episode of tachycardia or anything that felt POTSy while I was there....constant fluids for a few days, then xanax around the clock and constant bedrest with intermittent short walks and sitting up with the aide of the bed....yeah, that part felt better.....which leans me even more toward that nagging thought that I need to print off some articles about POTS/dysautonomia and get them to a doc...though now that I have the new neuro on board who is receptive to my conditions, maybe that's the best place to start).

But I have my movies, and my puppy. And it's probably a very good thing that I have my puppy. Because I have to get up every now and then with him. I have to get him more food/water, or take him out, or corral him from the kitchen or play with him a little, which is all good for me. And I've been making myself sit up longer and forcing fluids until I float away. I refuse to get sick again.

So that's that. And my klonopin is long past kicked in. And my puppy has been snoring on the couch next to me for quite some time now.....I think it's bed time.

Night all. I'll check in with you all soon. Like, tomorrow is the plan to get caught up on blogs :)

Much love!

Dizzy....weird kind of dizzy

Went to my family doc. She put me on an event monitor for a few days. It was uneventful. Pretty much what I expected. It showed some tachycardia, but nothing irregular, no funky rhythms. The doc offered to increase my beta blocker to help bring the heart rate down a little more, but then we would have to watch my blood pressure much closer because I'm so low already. I declined the med increase and mentioned that I was getting new compression stockings to help raise my blood pressure.

I'm hoping if I can bring my blood pressure up more, my heart rate my react accordingly. Just because I'm not uber dehydrated doesn't mean that that's not my problem. We brushed off dehydration as the cause for the tachy in the ED because I'm well hydrated. But I wonder if my volume is still low despite how well I drink. So I'm hoping compression stockings will help (as well as drinking until I float away).

Went to the rheumy this week. She wants me to see an endocrinologist. She wonders if I'm having hormone problems as the cause for my tachycardia. Specifically adrenaline. So, we'll see what this guy says.

And in the mean time, she gave me more drugs. Lyrica (on top of the Savella) for pain. She said this should be a bed time med, and it should help me sleep a little better, that the Savella would keep me awake if I took it too late. She also gave me Klonopin for sleep. Which is good because I'm not a big fan of traditional sleep aids...they come with downright scary side effects. Klonopin is a psych med (essentially) and she said would help me relax and help with the tossing and turning and over excited and vivid dreaming I've been having that keeps me awake. And it worked really well. I slept great last night. But it causes dizziness. LIKE WHOA. I checked my eyes, there's no nystagmus (just checking, you never know), and my blood pressure isn't causing this dizziness (and that's usually a different kind of dizzy anyway). I'm hoping it will go away soon, that it's just leftover from the night time dose. But I think it's time to buy a cane. My brain doesn't feel foggy like it normally does when I'm dizzy. I just feel horribly unsteady and unsafe when I'm up, like I have to be holding on to something if I want to make it to point B. So I think a cane for mornings would be helpful. I have no idea how I'm going to break that one to my boyfriend or the rest of my family. I know they're instantly going to tell me to get off the med or just take it earlier so that the side effects wear off in the morning or something. But I don't want to go off this. That was the best night sleep I've had in a while, even if it was drug-induced. And if I take it earlier, I'll have side effects in the evening instead of the morning.

I'm just looking for a good night sleep so I feel better during the day and some safety to go with it, because I'm afraid of falling. I realize I can get hurt when I do that. I fall frequently, but I am going to end up in a lot of trouble one of these days, and if it can be prevented, it should be.

I watched the time when I took it last night, and I'm watching the time now. I'm hoping as my body gets used to it, the time the side effects last will be less. But for now, I have to be careful not to fall. That's my biggest concern.

Actually, my biggest immediate concern is making breakfast. Without incident. Wish me luck.

Sleepy time, but first....

So that obnoxious pain in my chest that I've had for years and years and years that I could never figure out, that doctors could never figure out, that I was told I'm just going to have to live with because there was absolutely nothing wrong with me....? Well, I'm quite certain that pain is from subluxing/dislocating ribs. I was in bed when it happened a couple days ago, turned wrong and PAIN. Grabbed my chest (instinct, hand goes to what hurts) and wouldn't you know it, there's a huge bump in my chest next to my sternum. It's a rib. Sticking up. That wasn't sticking up before. After forcing myself to return to a naturally straight position (that's what I learned to do, even if I could never figure out what was wrong or why it hurt in the first place, I knew that staying contracted toward the pain wouldn't help for long), I stretched slowly, massaged and pressed on my chest a little, stretched and flexed a bit more, and eventually it went away (with some dull aching as an after effect, which is normal). So, there we have it. I'm pretty certain that's what's been going on. And I have every intention of bringing that up with the rheumatologist in a couple weeks when I see her (not that there's much she can do about it, but hell, maybe we can get creative).

I think the TED hose are doing something in the way of helping me. I skipped wearing them to work one day last week because I only have one pair and they needed washing (you have to hand wash them, and let them air dry, takes forever and they weren't dry by the time I had to go to work). Within 2 hours at work, my heart rate was ridiculously high and I felt horrible. I had to down close to 2 liters of water (with some salt for retention) in an hour to make my blood pressure come back up enough to make it chill.
And then halfway through the day, my legs were just achy. They're always achy, but this time it was the muscles aching, and in a way they hadn't in a while. It could have just been a coincidence that I was feeling bad that day. But I'm not willing to be testing that theory out all that much. I didn't wear the stockings, I felt like junk all day. Seems logical.
I still want a pair of tighter ones though. The thigh-highs that I have don't stay up while I'm at work. The force from walking all day and friction from my pants rubbing on them makes them scoot down to my knees. Which is worthless. I would rather have the thigh-highs, but not if they're not going to stay put. I ended up getting a pair of regular knee-highs out of the supply closet and switching them halfway through the day.

Tests for my tummy are in a week. Hopefully they can find something this time, or determine better what they can do to help me. Today was the first day of "prep". No meds for a week, to really build up all that nasty stomach acid. Ugh. Today wasn't too bad. Lots of hiccups and burps, and some mild pain later in the day. But I know it'll get worse the longer I go. The day before the test will be pretty bad. Not looking forward to that. But at least I know I don't have to work that day this time around. I have all three days off for the test.

So many tests and doctors and YUCK!! I hate being sick. I hate being a scheduling pain in the ass at work. I hate feeling like a disaster and like I need to explain myself. Today at work was not fun when I had to work around all my appointments that were scheduled. And there was nothing I could do because I'm not about to reschedule them and I don't really want to have to explain to everyone that I have EDS (and fibro) and what it is and that yes I can work but that yes I really am sick and need to be seeing all these doctors. Oy. What a mess.

But at any rate. I think I'm going to investigate the yummy smell coming from the kitchen (I don't think I'll eat, I just want to know what it is ;P ) and then lay down with my book. I'm tired, I could definitely turn in early tonight, but I would really like to carry on with this book!!! So good!!!

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.

Win and small fail

Small fail: the Savella I'm taking for fibromyalgia is still giving me thermoregulation/nerve/skin issues....I have goosebumps around the clock. Last night I was so hot I had to sit down, yet still had goosebumps all over my legs. I have them when I'm hot, cold, just right (Goldilocks ;P ), when something touches my skin, when someone even looks at me crosseyed....it's getting very frustrating. I can hardly shave my legs anymore because it's impossible to shave when you have goosebumps (hello razorburn!). It's to the point where it almost hurts, because my skin feels irritated all the time...it's always on alert. I'll have to ask the doc about that when I go in next month.

But for the big win: I got more pillows and new bed linens today!! I have pretty new colors and more comfy to lay on/in/around/between (you get the idea). I have a weird obsession with sheets...don't know what it is, I just like buying new ones, a lot. So, now I have brown (bottom sheet is dark chocolate brown, top sheet is lighter) with multicolored pillows (and I have a blue comforter for winter, but I didn't buy that, I already had it). It's so pretty, and the extra pillows to swim in were comfy.

There are 9 pillows and a teddy bear (he's important for the comfy) in that mess. It was wonderful.

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On a random note, I'm adding fish oil capsules to may daily drugs. I don't eat fish. It makes me gag and I can't stand it. But the omega-3's are good for joint health, and general health. So I'm throwing that into the mix. I think I'm going to look into more natural and alternative supplements and treatments to go along with the "standard" and western medicine. Because both are very important in very different ways.

sigh number one

Pre-work health screening went well. I checked the box on the form for fibromyalgia (even though I'm not entirely sure I do have it, I have been diagnosed, and I am taking meds for it), so the nurse practitioner asked. And I told her about the EDS as well. Bonus points to her for actually having heard of it before and seeming to have a general understanding of what it was. She didn't seem concerned about me working with either of those. But wanted me to go ahead and get a note from my doc saying that I can work, should anybody pose questions later. I'll call my rheumatologist in the morning.

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Going for my surgical consult for my stomach tomorrow. Hopefully he won't have an issue with the EDS either. I'm not really sure if or how that will affect this surgery. But this guy is one of the very best in the nation (like top 5) for this type of procedure, so I'm hoping he will know how to work around/with it.

After my consult, I'm going to visit Alicia's grandfather. He's in the same hospital I'm going to for my consult. She called me earlier and told me that he had a stroke a couple days ago. He's not doing good. He got TPA right away, but he still has a big clot (which can't be operated on for a week now because of the TPA). And he doesn't remember having the stroke no matter how many times he's told. He's blind in his left eye, having memory issues, trouble swallowing, partial paralysis on the left side, incontinence....it doesn't look good right now. I really hope he can pull out of this. I hope the surgery to remove the clot goes well.
I'm sad that Licia can't be here with her family, but I'm glad that she has Drew there. That's what she needs now, her husband.
I really hope G'Pa is okay. I can't picture him being so sick and weak....

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I need to get ready for work....gonna be a long sleepy night. And another short day of sleep tomorrow....
Oy.

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!

I feel old

I thought I would be to a point in my life eventually where I was back to not having to take any pills for anything (except my multivitamin, which is non-prescription, so I feel much better about it). Because in middle school and high school when I was taking numerous pills for numerous problems, only to find out I didn't really need any of them, I felt so much better just to get rid of the pill bottles. I felt youthful again. Young people shouldn't have that many medications, right?

Well, with the new diagnoses comes all the pills again.

Prenatal multivitamin 1 tab per day, the prenatals have more oomph for me
Topamax 50 mg twice a day, that's one I've been taking for years for my migraines
Prilosec twice a day, getting close to two years for that now (before that it was a lot of Tums, still a lot of those some days)

Now, I've tacked on more.

Savella (for the fibromyalgia), I'm on the titration pack now, but will be on 50 mg twice a day
Meloxicam (for inflammation/pain), 15 mg once a day, has to be evening for now, since I don't eat or drink much in the morning before I go to bed, just enough to keep my blood sugar up
Trazodone 100mg, to help me sleep, because with the slightest amoung of pain or discomfort, I'm done with the bed, and lack of sleep is bad for me, though I don't think I'll take it every day...maybe depending on how I feel when I go to bed, or see how I am the previous night...I've taken it in the past and I didn't need it every single night then either

And I have IBS drugs PRN for flareups. Those aren't usually so bad that I want to take meds, because they make me drousy, and because I don't like meds! But I do have them, and I will take them if I need to (because nobody likes being confined to the bathroom all day).

Hopefully there won't be anymore meds added onto this. I realize there might be changes, especially if the "hot flush" from the Savella doesn't let up (I thought I was going to die at work last night due to a defective internal thermostat!), but changes are better than additions.

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I think my spine was subluxing at work last night. It was the first time I've ever felt anything like it. It was more unstable and scary feeling than painful. Though at the time, I was rushing to get to a resident alarm and was more worried about not collapsing when I got there...adrenaline was rushing.
...I'd like to not experience that again at work.

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I had an AMAZING job interview today!!! I really really hope I get it! It's in a great hospital and I would be working a better shift and the way they run things is just so much different and better than where I'm at now and I just love it! And it would be easier on my body (once I got the hang of it...every new job is a little taxing in the beginning). I really clicked with the interviewer (the team lead/nurse manager) and it was the best interview I've ever had. She said she was going to put me up for the job offer and really hoped that I got it. I hope I do too!!!

I think I'm going to kick back for a little while before I have to start getting ready for work. I didn't get enough sleep (due to early but awesome interview) and my feet and back are already achy.

Well, there's that....almost....

Went to the rheumatologist today. After a very very very long day there (3 hours from the time I checked in to the time I left), lots of blood work (which won't be back for a week), several x-rays, and some basic H&P stuff, I have a diagnosis of Fibromyalgia and a preliminary diagnosis of Ehlers-Danlos syndrome, with an appointment to the geneticist to confirm.

I suppose I shouldn't be too surprised by the Fibromyalgia, though I don't like the idea of having more pills to take. One for daily maintenance, one for breakthrough pain and inflammation, one for IBS (if I want to try it, since I already have one that works well when I need it), and one for sleep, because I have been sleeping like crap (due to pain and the fact that my body doesn't like my schedule).

The EDS is still setting in though. Like, I've waited for someone to figure out what was wrong with me for so long that now that it's being acknowledged, I'm too shocked to know what to do with it. It feels very surreal.
It's not like a diagnosis of cancer where your whole life changes in an instant. This is something I've had all my life and will continue to have. There's no cure. There's nothing that's going to change it. There's only good health and maintenance of my body to make sure I feel good as much as possible. And that's what I'm going to do.

Matt....seemed slightly disappointed and sad when I told him that it was basically confirmed, but, I don't guess I can be too shocked. I know it's a lot to take. It's gotta be scary for him. But, I'm not going to let it slow me down. We're going to keep doing fun things just like we always have and live our lives just like we wanted to. We want to get married and have jobs we love and have a family and there's nothing that's going to change that for us.
I hope he'll start to see that this doesn't change anything for me or us. It'll just take a little adjusting. We'll get there.

Now I just have to tell mom and pa and dad. I know I told them that we were looking into a collagen disorder a while back (didn't want to worry anybody). So at least they had a little heads up. And mom has a lot of the same stuff going on (probably where I got it), so she'll need to see a doc about it as well.

It's all just a big whirlwind right now. Can't really keep my thoughts focused. I still have to figure out how I'm going to get new insurance with this diagnosis. I'm still on my COBRA from my old company, and with a pre-existing condition, it's hard to get new insurance. Even if they accepted me and just didn't cover for the pre-existing conditions for 12 months, I guess that wouldn't be so bad...I don't know. I just know I need to find new insurance very soon! Hopefully I'll get a new job soon and get insurance through them. But I know I can't bank on that right now. We'll see. I just need to leave my worries with God. He'll provide, I know. I just need to remember that.

I think I need to move onto something a little lighter for tonight. Like some drabbling or free writing of some sort.