Wednesday, August 31, 2011

Dislocated my foot

Thank you EDS. Sunday I managed to dislocate my foot (lateral part of my left foot, about halfway down where the 5th toe runs) three times in a couple hours. I've also subluxed my thumb a thousand and one times more than I usually do this week. And of course my shoulder twice. All since Sunday. Not that I don't sublux and dislocate often, but this week just seems like it's been overkill.

Not to mention stabbing stomach pain yesterday. And the reflux returning. I was hoping that the Cipro was actually helping with that (got Cipro after the hydrogen breath test came back positive for bacterial overgrowth in my gut, and it was actually helping with the reflux a bit....went from refluxing 90% of the day down to about 50%, but it's coming back again and I haven't been off it that long).

And my appetite has been at it's worst lately. Haven't had an appetite, forget well into the afternoon that I haven't eaten (usually still manage to finish a soda though), when I try to eat it hurts, I've been choking, refluxing, getting full too fast, unable to digest anything. Fail. I don't have another appointment with the GI as of now, because we were talking about me going to a new specialist group. But if that gets to be taking too long, I'll call him and either get the specialist group appt set up or see him again about some of the other tests and treatments that were still in line before the J-tube. I'll let him do his tests and rule things out if thats what it takes, because if there was something we could do for all of this besides feeding tubes, I would be all for it. I'm just not feeling optimistic about the fact that it won't come to that in the end. And really, I'm okay with the feeding tube. I just want to feel a little better.

I have school again today. We'll give the chairs one more try, then it's time to do something about the comfort level so that I can focus better!

Monday, August 29, 2011

Wait for it, it'll most definitely happen

I am only taking one class this semester (the second had to be dropped because of wickedly poor timing around everything else, I'll do it next semester though :D ). And it happens to feel like the longest class ever, clocking in at a mere 1hr15min, twice a week.

The chairs sit just a little too high for me in the lecture hall. This means that I'm either sitting back with my feet on the floor, causing my hips to settle out of place, or I scoot forward so that my feet touch better, leaving my back unsupported (and also causing me to lean forward on my elbows on the table), or the chair is just so damn hard and ill-shaped that everything sucks.

I give it another week before I start bringing either a step stool, cushion, or both to make that hour more tolerable.

Plus side: I convinced the professor, who is very against computers in her classes (computers, cell phones, ereaders, everything should be turned off and put away) to let me keep my netbook. I can type much easier than I can hold a pen. My hands just fatigue too quickly to be holding a pen for over an hour like that, and come winter, it will be even worse. I don't have a disability form filed with the school (because I don't think I need one, I don't have anything listing me as disabled anywhere else because I can't afford to let it cost me my job, a job which I can still do), but she told me to write up a contract as to why I was requesting it and to promise to stay offline (I keep my w-lan disabled on that computer most of the time anyway, its sole purpose in life was to be a typing/notetaking machine). She accepted it. And I have my little red bite with me in class still. So far, things are looking great!

Thursday, August 18, 2011

The oy vey of it all.

I can't reinforce enough how much I do not like taking broad-spectrum high-dose antibiotics. It gives me a tummy ache and makes me have to poo all the time. NO! (10 more days to go :\ )

Birth control, ye are my frienemy. One the one hand, I haven't had a migraine this month. It's glorious. Like, shout from the rooftops awesome. On the other hand, I knew that it would make my period funky for at least one more cycle. And sure enough, that happened. about 7 days after I should have gotten my period, I started spotting (like you do right at the end, with that little bit of brown/old blood). Today, while at work, it started in pretty good. Only, it never turned into an actual period. Just dark dark brown (seriously almost looks black) thick blood and clots. The clots aren't big enough in size to worry me. But the fact that it's just so much of this mess is a little obnoxious (and slightly worrisome - but I'll give my body time to be angry at me for intruding upon it with hormones). So, no migraine, minimal cramping, a whole lot of yuck. And on top of that, the float trip is this weekend. My skin is already not feeling so great from wearing pads all day and I don't think tampons are really called for right now (there's not THAT much, and it's so thick that a tampon would absorb it). Which leaves me to either wear a tampon in the water or just let my butt sit in the water without anything all day (which I've done on my period in the past). But this just sounds like a UTI or vaginosis waiting to happen. Oy.
Let's do this better next month body.

Also, not that anybody but me would notice it - small is still small - but birth control has actually caused (non-painful) breast swelling. That part I could REALLY get used to ;P

I think it's time for pills and some Harry Potter before bed. Peace out kids.

Thursday, August 11, 2011

Things that go well in a broken body

My period was due this week (I always give or take 3 days when I'm estimating, but that has passed now). I'm really feeling optimistic that the birth control just might be doing the trick. I also haven't had my pesky monthly migraine that goes with it. I did have a headache today, but there were a lot of factors adding up that triggered it, and it most definitely felt more like a random headache than my hormone migraine.
I know that since I started the pills halfway through my cycle and only being the first month on them means that I will likely get some kind of period/spotting before I get enough hormones in me to really regulate things, but I'm prepared for that and I know that it will be nothing compared to how I was before.
So bonus points for that one. (half a point taken away for the pill being new/name brand and costing $85/month, so we'll have to make absolutely sure my insurance is going to play nice when I get the actual prescription - on sample packs for 3 months to see if it's what I need)

Had my upper endoscopy (EGD) yesterday. Went really well. Last time I had it done, about 3 years ago, it went well, but the anesthesia left something to be desired (I was given Versed, conscious sedation). I was groggy the rest of the day, and had amnesia for several hours (both normal). Though I didn't know that this could actually be improved upon until I had Propofol this time around. It wears off immediately so that you can actually walk and have a conversation and all that fun stuff. But you're out cold, rather than conscious but out and not caring about the things going on with your body. I was told to turn on my side, a bite guard was put in my mouth (I hate things around my mouth because I have gotten a bit obsessive-compulsive about my teeth and lips and the constant reflux taste in my mouth), and I was told to just relax while they started the Propofol. I nodded to say I could feel it, I blinked, then woke up in recovery. It was a pretty great nap :P
The scope showed good things. There's very little erosion in my esophagus (because I'm refluxing more neutral stomach contents rather than acid), stomach and duodenum looked to be in good shape (though still sluggish). Took several cold biopsies. One bleeder needed to be clamped off (I should expect a silver clip in my poo in a few days :P ) and everything else was good. My throat HURT and my voice was all gravely until this morning (now it's just a twinge), and the bite guard made a hefty blister on my bottom lip (which felt more like hell this morning after it had time to become more irritated - seriously, the whole right side of my bottom lip is cut up and blistery and puffy...I hate EDS skin).
The whole team was excellent and everything was fast and easy. Glad it went well. Once the results from the biopsies come in (there's no reason to believe they won't be normal, just routine) I'm going to get a referral to a small specialist group at another hospital. 3 female docs who specifically study GI disorders in women. My GI doc thinks they might have some useful input for me. And he just wants to make sure that he's covered everything before we go for the feeding tube.


Something wonderful I found this week: I was craving cake. I found a quick and easy recipe I was able to modify for my diet and still taste incredibly yummy. And because it's hot here, it's microwavable, so no need to heat up the house with the oven. It's about 2-4 servings and takes all of 5 minutes to make.

1/4 cup white sugar
1 egg (or egg substitute - I'm going to start using this more because it's less fat, translating to less pain, especially when I have an egg for breakfast before work)
3 Tablespoons of butter/oil (I use plain, no sugar added applesauce from a jar or homemade, and everything in the same proportions...3 T of butter = 3 T of applesauce)
1/4 cup milk (I use almond milk - plain or flavored - or rice milk, both are amazing)
1/2 cup white flour (or flour of choice...I usually use white flour, but I've used almond flour in my baking too, just no cornmeal/corn flour, that one is harder for me to digest)
1/4 - 1/2 tsp baking powder
pinch of salt
2 Tablespoons cocoa powder (I leave this out sometimes or use less as chocolate irritates my gut)

Do it just like regular cake. Mix the dry ingredients in one bowl. Wet ingredients (including sugar) in another ( a coffee mug is plenty big for this part). Pour them together, and mix until all the flour is wet. Spray a medium microwave safe dish with fat free cooking spray. Pour and microwave (loosely covered) on high for 2-2 1/2 minutes. Turn out onto plate. AND ENJOY!

I've made this 3 times (share it with my dad) in the last week and it's wonderful because my EDS can't complain about time spent slaving in the kitchen over it. It's so freaking simple and wonderful.


Not so great thing: about once a month, I get really irritated with not being able to eat anything I like. I miss food, I'm a great cook, I enjoy food. So just about every 3-4 weeks, I'll eat something that's not on my diet, full knowing that it's going to make me feel like hell. Today was that day. I had a coney and fries. There's nothing about that that is good for me at all. But something I love very much. That was at noon, and I still feel sharp pain and pressure - it's 9pm here (and I think that also contributed partly to the headache). But, it is what it is. I really enjoy and savor foods so much more when I do this because I know how little I can realistically do it.
All in all, it was worth it to enjoy real food again. And now that I'm reaping the repercussions of it, I'll be able to hold off again just fine for several more weeks.


I think perhaps that's all for now. I'm gonna surf through tumblr for 5 minutes and see if anything good has popped up since I was on last a few days ago. It's nice little pick-me-ups :)

Hope all is well with everybody!!! Much love!

Monday, August 8, 2011

The cold wet nose on my keeps me alert

Got a puppy here, he's going to have cabin fever if we don't get rid of these clouds soon. He has to spend time outside otherwise he drives me bonkers. So sunshine, come on out.

Hydrogen breath test went well last week. The prep for it sucked. Even though my diet is pretty restricted, the prep is even more restricted. The only thing I ate all day was plain white rice with a little salt, saltine crackers, and water. That's it. I was feeling crummy by the end of the day. But the test went pretty well. I did my controls, then had to drink lactulose, which was mixed in a few oz of water (you know, it doesn't taste bad when it's diluted enough, and I was just so happy to drink something - I had to be NPO for 12 hours for the test, so well before I went to bed). I did get some cramping and eventually the laxative effect of it kicked in - luckily well after I got home. The test took 4 hours, and I had a book and my netbook with me, so it passed by pretty well. I'll get the results from that in a few weeks.

Birth control is going pretty well so far. Haven't had any noteworthy side effects which is good. And I'm due to start my period in about 3 days. Given that I haven't been on the pill for even a full 3 weeks yet, I'm not sure what will happen this week. I expect to be a little out of whack for a while. But if this works, it'll all be worth it.
Still having breast pain. Really bad. It's so weird because it comes and goes. It fades halfway into my period, then about 10 days later, starts up again. And grows in intensity with each day. There's no rash, redness, drainage, lumps or bumps. It's just swollen and painful. The gyn and I are both stumped because if it was hormonal, it would be bilateral. If it was an injury, it would be constant. We're going to see what the birth control does for it and re-examine in a couple months.

Got things to do today, so it's time to hop to it.

Sunday, August 7, 2011

Happy EDS day to me, huh?

Yesterday was definitely a "flare" kind of day. I was having ridiculous issues all day. Luckily, not terribly painful ones, but mostly annoying. Like the fact that I dropped everything I picked up. Everything. I spent more time reaching to the floor for my pen, clipboard, alcohol wipes, shears, gloves, blankets, gowns, EVERYTHING. There wasn't a single thing I didn't promptly drop after picking it up. My fingers were just not having it. It's really frustrating because it wastes SO MUCH TIME and it's just plain embarrassing. I mean, nobody made fun or anything, but the fact that every single person on my floor watched me dropping things all day...and it's not like I can explain it. Some of them know I have a "bendy disease" or "connective tissue disorder" but I never really do much explaining after that because it took me a couple years to get the hang of it, there's no way I would expect anybody (even hospital nursing staff) to really understand why it was that I just couldn't seem to keep anything in my hands.
Oh, also spent a lot of the day tripping over my own feet. That was fun too. I came really close to meeting the floor a couple times. And every time I tripped, my shoes made that horrible screeching sound against the floor. So of course it got everyone's attention even if I wasn't in their line of sight to begin with. Again, not like I can explain that this disease I have that makes my tummy stupid (mostly, they know of my GI issues, because it comes up a lot when you share meals with people or talk about food) or my joints hurt (yup, carry a backpack full of braces and supports to work every day, and sometimes, they come out to play) is also what makes me ridiculously clumsy. More clumsy than I can explain away.

I was glad to see that my dad wasn't home when I got home last night because it gave me a good excuse to have a small drink by myself and just chill. Yeah, alcohol isn't conducive to the clumsy, but it sure is nice going down, and I do have to occasionally indulge in something, otherwise I'd go completely insane (-er?). So I got my cane, made a small drink, and plopped my ass on the couch for a couple hours. Then to bed, sleeping wonderfully (with my regular klonopin of course).

So, that was fun. I'm glad today is going better. Granted, I haven't done much today, which is also just fine. I just came in from some time outside with the puppy in the sunshine. I take my book out there and just bask in the yummy sun!

Now the puppy is napping (the heat always makes him zonk out), and I'm considering stretching out on the floor with a movie and a nap myself. Ah, what a lovely day off for me. I hope I still have plenty more of these after school starts. They are most definitely what keep me going strong!!