Wednesday, September 29, 2010

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!!!

Wednesday, September 15, 2010

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.

Friday, September 10, 2010

Real quick before bed

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

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


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


Last night was my last night at work. It was really good. Nothing terribly crazy or stressful; just a "normal" night.
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

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'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'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.


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.

Accomplished night

Didn't get much done last night on my night off because my blood sugar kept going up (for me, 135 is too high...I start feeling symptomatic over 125). I felt sluggish and blah and mostly just lazed around while I snacked and poked my poor fingers. Watched a lot of Scrubs though, which is always fun :)

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

sigh number two, or, the week is finally over

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


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) 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!!!