Wednesday, December 1, 2010
Wednesday, November 24, 2010
Thursday, November 11, 2010
Wednesday, November 10, 2010
Tuesday, November 9, 2010
Monday, November 8, 2010
Wednesday, November 3, 2010
Friday, October 29, 2010
Thursday, October 21, 2010
Saturday, October 16, 2010
Sunday, October 10, 2010
Wednesday, September 29, 2010
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!!!
Wednesday, September 15, 2010
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.
Friday, September 10, 2010
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.
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!
Thursday, September 9, 2010
Hopefully things can get straightened out with the doctor's office and HR so that there won't be any issues when I try to get to orientation on Saturday. I really don't need a hold up getting back to work. But I'm hopeful that it'll all get straightened out. And I'm really looking forward to my new job :)
Been having some tachycardia lately. I've always had low blood pressure (I'm little, that's not terribly abnormal), but with my heart rate climbing, I'm a little worried. I ordered some thigh-high TED stockings (obviously, without and Rx, they aren't super strong, but better than nothing) to try out, maybe they'll help a little. Maybe. If not, I need to call my doc to get a PT referral anyway. I'll mention it to her then. And ask if she thinks stronger TEDs would help or if I need something else (cardio referral, I'm sure...but we'll deal with that when it comes).
I've been missing Matt like crazy. Him working has definitely put a damper on the amount of time we get to spend together. Which we knew would happen. But it's still a bummer.
I just can't wait until we don't have to do this commuting and time apart and not seeing each other.
All in good time. I know.
I thought I had more to say. I guess not ;P Been a pretty boring couple of days. That's not such a bad thing, I suppose.
Sunday, September 5, 2010
There are 9 pillows and a teddy bear (he's important for the comfy) in that mess. It was wonderful.
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.
Tonight though....well, we made up for last night!! My blood sugar decided to turn the other direction, which is slightly easier to manage....even if my stomach doesn't like being that full all the time. So I sat and had a snack every time I was low. Between all the snacking, I did some cleaning! My room really needed some work. It's not that it was unliveable, but it was getting to be untidy to the point that it was bothering me a lot. So I cleaned every surface, ceiling to floor. I dusted, I organized, I cleaned out knick-knacks and boxes and shelves, sorted through paid bills/check stubs/doctor office slips/misc papers, vaccuumed, did laundry (I do laundry every 3-4 days because that's all the scrub bottoms I have :P but I'll get more for the new job and just do laundry once a week), washed my bedding, made my grocery list, ordered compression stockings online (we'll see if they help anything at all...I've got some spider veins, and I'm starting to get one or two varicose veins on the backs of my knees, and maybe it'll help hold small joints together without big bulky braces), compared prices for nutritional supplements online and found that it's still slightly cheaper to get it (Glucerna) at walmart, but I may also order a case of another kind (Enlive) for days that my tummy won't cooperate (it's fat free, supposed to be good for IBS and GI issues, but has a lot of sugar, which is not great on a regular basis for my blood sugar issues), made a grocery list, and am getting ready to do the dishes.
I'll do the dishes in a little bit, I felt like sitting for a while. And then head to the store around sunrise....I don't like being there when all the crazies are there in the dark.
Yes, most definitely an accomplished night. I kept missing Matt, but I really needed to get things done tonight, and since dad is never not home, I always have to keep it down when he's sleeping. This was my one opportunity (plus, I got to stay in my underwear all day :P ). This way, I got everything done all at once, and Monday, while I'm off for the holiday, we can go out and do something again :)
I definitely miss living on my own sometimes when it comes to things like this....have to worry about someone else being around when you're trying to get things done on your own time. But changing schedules will help a lot, then we'll be on the same time table.
But next time I move, it'll be different. Won't be living alone, but I'll be living with someone who I can stay up late with, or go to bed early with or do chores with or walk around in my jammies or underwear with or just do whatever with. It'll be more than worth it :)
Okay, time for dishes. Night all!
Saturday, September 4, 2010
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.
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!
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.
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?
I just downloaded I Spy on my iPhone....I'm definitely going to play that for a while before I hit the hay!!!
Tuesday, August 31, 2010
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....
I need to get ready for work....gonna be a long sleepy night. And another short day of sleep tomorrow....
Monday, August 30, 2010
Only problem: I lost a ton of weight! I'm too skinny already and have a ton of weight and eating problems already because of my stupid, ill-functioning guts. I miss the part of my life when I was able to eat with no problems and the only issue I ever had was occasional lactose intollerance.
Now, I've lost 7 lbs in a couple weeks, my appetite is dwindling and I'm afraid of what's going to happen if I start eating junk again. The lack of appetite always happens anytime I lose any weight, so I know I just have to force myself to eat until I gain the weight back. But I'm having swallow issues again. And I gag on everything because my appetite is so poor right now. So I gave in and got fast food tonight, because I was craving a burger, and if that's what I was craving then that's what I was going to have. And I'm going to have the other half of it at work tonight.
And I also bought Glucerna shakes and snack bars. Which was incredibly EXPENSIVE! $30 for 2 6-packs of shakes, and 2 4-packs of bars. And that'll only last me about a week. Holy crap. But I've come to the conclusion that my body is going to cost me a lot of money :P
Hopefully I can do the Glucerna without as many blood sugar spikes/crashes and get my weight back up (I had been drinking Ensure Plus before I cut out the sugary snack at work, but those aren't balanced for people with blood sugar issues).
So, here's to hoping the next couple weeks will bring about some good change!!
Tomorrow is my drug testing and fit test for my new job. Obviously I don't have anything to worry about the drug test ;) But I am hoping my body will keep it all together tomorrow long enough to pass a fit test. I've done several of these before and they're all a little different. There was one I did several years ago that was very detailed and very intense (they gave the same one to everybody, so it had to cover a lot, rather than just one department), and I'm certain if I was to take that again, I would have some problems (there's a pinch test that I couldn't pass before, and I know I would do even worse now...my fingers are just getting bad...I really want ring splints) and the one that required me to squat down and balance on my toes was hard then too because my toes are way too bendy, especially when I'm trying to balance on them for long periods of time with absolutely nothing to hold on to. But then the one I took a few months ago was nothing more than some range of motion, a leg/back strength test, and a transfer test (75lbs of free weight from one location to another, with good form). So we'll see what they want me to do tomorrow. If it's as intense as the first one, I may mention that I have EDS (if I can't "pass" part of it, like the pinch test) so that they don't try to put me into therapy or inappropriate braces to fix my problem (they will, if you can't pass part of the test). But we'll see what they're like first.
I had a curious thought the other day. I work in health care. Where we wash our hands and use hand sanitizer 12 million times a day. We're only allowed one ring/ring set per hand (mostly this is to allow people to wear their wedding rings/bands, but otherwise, they'd prefer the other stuff be left at home) and fake nails are not permitted. Since ring splints are a doctor prescribed orthotic device to provide better function, therefore, a workplace can't tell you to remove them (it would be like telling an amputee to remove their limb, or a patient with CP to remove their AFOs), what kind of issues will it create? Because I'll have a dozen or more "rings" to wash under each time I wash my hands (I know right now I need support on each DIP joint -oval 8 rings would be just fine with me, possibly PIP on middle fingers, both thumbs need support, and a buddy ring for my little (4th) fingers to keep them from flying out to the side as freely as they like to). It could be interesting.
All this said, I don't care what they make me do, as long as I can get them, because I know I would see a world of change if I had more support for my hands/fingers. And work is the place I need them most.
I'm done rambling....mostly because said hands have had enough.... :P
Friday, August 27, 2010
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....
Thursday, August 26, 2010
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........
Tuesday, August 24, 2010
The word "starving" is quite bothersome to me. People I know aren't actually starving. Because the people I know are all at least well enough off to afford at least two meals each day.
When it's morning and you haven't eaten since 2 hours before bed and your stomach is empty and growling, you're not starving. You're hungry.
When you had breakfast between 6 and 8 and you now see that the clock is approaching 11-12, causing your stomach to wake up all of a sudden, you're not starving. That's habit, and hunger.
When you're at a restaurant and you've ordered a meal that takes 30 minutes to get to you, but you are sipping wine and nibbling bread while you talk to someone, you're not starving. You have an appetite.
There are many people who are, in fact, starving in America. But believe me, these people are not us.
And then there's the word misery. I do have just as many problems with this one. Because misery is different for everyone, this much I'm sure of. But again, let's break it down a little.
I know it's summer and that it's very hot and uncomfortable in the sun (especially around here, where the humidity can feel like it may choke you some days...and hey, I choke on a daily freaking basis, so I know what that feels like), but an 85-90 degree day is not misery. It's an annoyance.
When you're camped out in line waiting for concert tickets on a super hot day or a super cold day, for hours or even a whole day, please be assured, I don't have sympathy. I think that is a CHOICE. Concert tickets aren't exactly something you'd call miserable now is it?
And when you've done something like drink all night with your friends and wake up hung over, or go out and do something you knew wasn't safe and end up with a sprain or strain or even a broken bone...I'll give you that doesn't feel good at all, maybe even feels miserable if that's the worst you've been through in your life. But again, choices. I have little sympathy for someone who parties all night and feels like crap in the morning or knew they shouldn't be mountain climbing with an already broken arm.
You know what is miserable?
A man dying in a hospital bed in a nursing home. Who is starving to death because his body told him weeks ago that he no longer needed food, that calories weren't necessary anymore. A man who is in a great deal of pain, but nobody can truly know how much because he can't speak anymore. A man who is getting more pressure sores by the hour because his circulatory system is shutting down. A man who's eyes won't close, but remain glazed over and fixed in one position. A man who's mouth won't close, so as he gasps and breathes deeply, his gums and teeth and palate and tongue and lips dry out so much they crack. A man who can hear what's going on around him, maybe even still see a little, but have no way to communicate what he really needs or wants or feels.
That looked pretty miserable to me.
Monday, August 23, 2010
A little while later in the car, he asked again. "Did you hurt it at work or something?" (my old folks abuse me)
So I told him I woke up with it a little out of place and it was just hurting because it was just floating around (my pinky fingers have a lot of play in them, not a whole lot of being anchored to the rest of my hand going on there).
And then he started asking questions about Ehlers-Danlos syndrome. What type the rheumatologist thought I had (she didn't specify, she's leaving that up to the geneticist), and what I thought (I think it's classical type, in my uneducated opinion) and he wanted to make sure I didn't think I had vascular type. He's been doing research. He talked to his dad (a biology professor and researcher for one of the top schools in the country) and he sent him a lot of information about it too. That's good. I'm glad he's getting more info about it. And we talked about genetics and inheritance. Because it's not something that's usually spontaneous. I probably got it from momma, and she's going to look into it. And with the research he's been doing, Matt really sees how much I fall into a "textbook" case of EDS. And how mom does as well.
I know this scares the hell out of him, but it means SO much to me that he's doing this. Researching and talking about it and taking an extra effort so that I'm not doing this by myself. I knew I wasn't, but it just feels like I can lean on him that much more now, without having to worry about breaking him. We're in this together, no matter what. And I love him for that. So much.
Sunday, August 22, 2010
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.
Saturday, August 21, 2010
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.
Friday, August 20, 2010
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!
Thursday, August 19, 2010
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.
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.
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.
Tuesday, August 17, 2010
Just got off the phone with momma. That was hard. She's scared. She asked me about the prognosis very quickly, and it broke my heart to tell her that EDS gets worse, not better. Her little girl is sick and she couldn't hold her. That was tough for both of us.
She's going to come up here for my appointment with the geneticist though. She wants to see how it goes and be there for me. I certainly won't argue with her about it.
I also told her she needed to talk to the doctor about it. Although she's no "Indian Rubber Man", she has some symptoms, and our bodies are very similar in their misfunctioning ways. She has mitral valve prolapse, arthritis in many joints (more than a woman her age should, and she started having problems since before I could remember), she has pain and popping and rubbing in a lot of her joints, she has a bad elbow as of recently that 4 specialists (orthopedists, surgeons, and PT) could not determine a cause for (so they've done the most outlandish treatments they can think of for it, all in vain), colon/digestive issues that were chalked up to old age (but they shouldn't be starting in with the old age stuff when she was just 45). And I'm sure if we were face to face, we could compare a few others. So, she's going to talk to Bubba (family doc). I'm sure she's going to spend more time talking about me than herself, but as long as she mentions it, he'll do the rest of the work for her.
It's starting to sink in now. Might even be a little scary. Like, I may go through this with my own kids someday. That part scares me.
Monday, August 16, 2010
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.
Sunday, August 15, 2010
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.
Sunday, August 8, 2010
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....
Wednesday, August 4, 2010
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.
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 :)
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.
Monday, August 2, 2010
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.
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
Saturday, July 31, 2010
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 :)
Friday, July 30, 2010
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 ;)
Wednesday, July 28, 2010
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
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!!
Tuesday, July 27, 2010
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.
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.
Live, love, and prayer all around.