Wednesday, March 28, 2012

Happy week, and some shtuff

Exciting news from Saturday: I GOT MY BRACES!!! Custom fit, custom built. From the time I asked my primary for a referral to ortho to the time I was donning the custom built braces was less than 2 months. INCREDIBLE. And my insurance covered them completely! No copay, no deductible, nothing out of pocket. I couldn't believe my good fortune when I heard that!

And I had no idea just how crazy my left knee was until I put these on either! Sheesh! That thing is at a very unnatural angle. But the good news is that the braces will help prevent more "drooping" inward. And most of all, they stop hyperextension and support the entire joint when I move. Less balance trouble, less falling, more strength (same strength, but now I can use it more properly), more comfort, less pain.

In addition, because I don't hyperextend my knees in the braces, I don't hyperextend my back as much when I'm standing in them.

Did have a small setback yesterday. While I've worn the braces for at least 8 hours every day since I got them, yesterday was the first time I worked (a full 12 hr shift) in them. Between the added moisture (sweat! life 4 floors up in the summer!) and the added friction from rigorous work, my skin is very displeased. Very. When I took them off last night I had blisters and irritation in the lines between the pads, kind of spider web-ish. After showering and sleeping (I was scratching in the middle of the night, I know I woke up and got a baby wipe at one point to just wipe my skin with something was like fire in my skin), it looks better this morning, but the movement of just walking is enough to irritate the open spots. So I was intentionally very lazy today. If I give in and give my body the time to heal, I can pick up again sooner. I have a doctor appointment across town tomorrow, so I'll have them back on for at least 4 hours. I probably won't keep them on once I get home...just not worth the torture; skin needs to breathe to heal.

And this weekend, I'm going to have to minimize how long I wear them at work. I may do the shift in thirds, wear them for the first 4 hours, off for 4, on for the last 4 (first and last 4s are the worst anyway). I know my skin will get used to it eventually. Just gonna take some time.

In other news, finally off light duty from the wrist/hand sprain from last month. I saw 3 different doctors in 4 visits at the work comp clinic. Continuity of care much? The first doc was great, agreed that my hypermobile/loose joints saved me from a crush injury (I prefer a nasty sprain to crush fractures). Second doc admitted he knew very little about EDS but that he'd read my file, tested my mobility and asked me what I thought as far as work and restrictions. The third doc didn't believe that I had EDS, that my hand dislocated when my patient grabbed me, that anything I said was true. Very frustrating. But he still listened to my suggestion that I needed another week of modified duty before I returned full duty. I hate those situations. I get that people haven't heard of it, and I'm more than happy to help with my end of the knowledge, but people discounting what I say and refusing to believe me just because the disease is rare, that's just ignorant.

And now I'm back to itchy irritated skin, so I'm gonna sit back with something cold on my legs to make it stop!

Monday, March 19, 2012

tired, the word my body is looking for is tired

So, fun couple weeks. A week ago Saturday, spent about 12 hours puking my guts up. When I couldn't take it anymore (I was in PAIN! I though something was seriously wrong), I had dad take me to the ER. Because of the hour (not quite 5 am) I got back quickly, had an IV started and fluids running, Zofran and Dilaudid on board within 30 minutes. Continued getting Zofran every hour, as well as a second dose of Dilaudid after my CT scan. CT showed a good amount of inflammation and irritation in the stomach, small, and large intestines. I had a wicked stomach bug, nothing fatal, just painful and annoying.
So they pumped more fluids and meds into me (I continued to throw up despite the nausea the point I started bringing up bile because there was just nothing left...that was painful), and sent me home with lots of meds (antibiotics on the off chance it was bacterial, because we needed this gone, two nausea meds that way I could rotate them and take them more often - instead of just taking a single Zofran every 4-6 hours, I had Zofran, then Phenergan 3 hours later, then another Zofran 3 hours after that...that way I also stood a better chance of having relief if I threw one up - and Vicodin for pain, which I pretty well held off on because narcotics make me nauseated and I didn't really need any more help throwing up or feeling gross).
Felt better once I started keeping food and fluids down again. But about 10 days later, I'm still having a bit of a feeling that my gut is inflamed/irritated.
But, all that said, feeling so much better now.

TMI incoming (poo talk, you've been warned)

But the antibiotics and funky diet really upset the flora in my gut, which led to a week of frequent poo, and very soft sticky poo. Which has led to hemmoroid flare ups that itch and burn, and very raw skin around the same area. I had been using over the counter hemmoroid cream for comfort but the constant moisture was making the small area of raw skin much larger and much more irritated. So I stopped, took a pseudo Sitz bath (I don't have the basin, so I parked myself in a shallow lukewarm bath with Epsom salts), used a pH balanced cleanser specially made for peri-anal care, made sure everything was dry, and put cornstarch on my butt (glamorous). It was doing better, but it's been warm out, and as my body does prefer the warm temps to the cold, I've been getting some sunshine time in, which leads to more moisture in areas where skin touch, and then to the raw area finally peeling and bleeding a little.
All in all, I really just wanna walk around a cool house naked all day with cornstarch in my crack. Can't do that, but if anybody knows diligent backside care, it's a nurse assistant, yes? I've gotten over this in the past, I can do it again!


So, next day here. I was in SOOOO much pain last night I couldn't keep going. That's been an issue for the last couple days. I wake up feeling a little achy, and by the middle/end of the day, I'm in so much pain I don't know what to do. I did take Vicodin the first night, but then I wound up with a headache after the pain was gone (narcotics are contraindicated in migraine sufferers, it was bound to happen). I didn't want to take more narcs last night so I popped a few advil and stretched out in a nice cool bed (window open, naked, cool helped....while cold isn't usually soothing for me, this wasn't a shocking cold and it seemed to calm the burning sensation I was having in my muscles and joints, plus just laying down hurt, since I had been sitting up and fighting it for so long).

Hate pain days. I'm hoping some light activity and going to bed earlier tonight will help, since I have to work Thursday and Friday (still on light duty from a sprained/dislocated hand).


I'm planning to move back home. I really don't like the idea of moving and starting over with so many things yet again, but I need my family and friends and support that I just don't have here. So I've talked to my mom and we're going to look into housing and jobs and things. And I'm looking at a different degree program. I think part of the problem with my lack of urgency to finish this one is because I don't actually think I can physically do it. I could know the info inside and out, but that wouldn't compensate for the fact that spending multiple days on my feet for 8-12 hours and still having to keep up with homework and a regular job. So I am looking for something that would be less physically taxing that would help me out financially (I won't be a computer programmer millionaire or anything, but a certificate in billing/coding would at least provide me with close to twice as much per year, and I could still decide I like something else later and continue my education further for that).

For now, that's all I have. Trying to figure out money and houses and jobs and all kinds of messy stuff.

Wednesday, March 7, 2012

A friend in need is a friend indeed.

I try not to be antisocial/asocial, but at work, I just don't have a lot of friends. I have acquaintances, and we're all pretty friendly with each other, but I don't really spend a lot of time chatting with everyone and making plans to go out and do things.
We all know a little about each other, we spend a lot of time together, and it's still like family, whether we're all best friends or not.

My EDS/disability is no secret at work. It comes up a lot (I have a physically demanding job, my body protests this throughout the day, so people know). But we all know that having a disability, being sick a lot, being different like that is hard to connect with other people.

While I was on sick leave in Jan/Feb, one of my co-workers was also sick. She found out she has lymphoma and has been doing the cancer dance ever since. She had a biopsy done in her neck, so she has a scar there that people see (she's been wearing t-shirts that are cut high to try to cover it at work). She's on chemo now too.
She doesn't really talk to anyone about it. She doesn't want the attention, and everyone has been respecting that. She told people she was sick just because it was getting hard to hide and when you work in the job we do, it's best to let at least one or two people know that you've got serious stuff going on.
But she doesn't talk about it. She's very private and just wants to get better without people gawking.

....Yesterday at lunch, the two of us alone behind a closed door, she talked about it. Willingly. Comfortably. I don't have cancer and she doesn't have EDS, but, we're both sick. And I think that's what she was looking for, someone to relate to, someone who would get it. We're not best friends, and this won't change that, but I'm glad she talked to me, that she felt like she could talk to me.
It's hard going through illness and disability alone, but it's just as hard to know that people don't get it. I felt pretty special to be her listening ear, I'm sure she needed it.

You never know what life will throw at you (because a young woman, a single mom, going to school and working full time shouldn't be the one with cancer), but it's wise to always make sure you have friends who will be there for you no matter what.
I hope she recovers quickly, that the chemotherapy will rid her of her cancer and that she can get back to feeling good again (she puts on a good front, but she's tired). And I hope she knows that if she ever needs to talk again, I'm always there. Not easy being sick, but it's a little easier with friends.