Friday, June 29, 2012

PT and bendy body issues

So, getting physio for my work-related back injury. And I was able to pick my location for PT, which was great, because I'm going where I used to go and have PTs who already know me and my crazy body. Which is necessary with such strange issues. The therapist I've been assigned to hasn't worked with me before, but it's a small facility, so he recognized me and knew I had some laxity (understatement). And bonus, he's actually had EDS and HMS patients before. Major score!

So, he's been awesome with my back. He's also taking my wonky shoulder on since it's being greatly effected by the upper back sprain (I rotated a couple vertebra in my upper T-spine area). I had a really bad day today because of the heat and the fact that I sat in a horrible chair for 12 hours yesterday. No matter what I did, the left shoulder was not being very cooperative. Flaring out, twisting weird, and on the verge of subluxing no matter what I did. So he changed my workout a few times when each one was too much for that shoulder (the right side, while still in pain from the strain, is very cooperative with whatever exercise thrown at it).

And then my favorite part: a massage on my upper back and shoulder, some stretching of the fascia to make the knots relax a bit (which hurts a little at first, but feels better once it all starts to stretch out), and ultrasound on my shoulder. I always feel so much better afterward. Not all knotted and kinked up and sore. Granted, it hurts again a few hours later, but, healing takes time.

Followup on Tuesday with the work comp doc, and I already have PT scheduled for that afternoon (back strains and spasms don't go away that quickly).

But for now, I have the weekend off, a haircut tomorrow (oh, scalp massage, how I love thee), and time to be a bum in the nice air conditioned house while it's wicked hot out.

Hope everyone has a wonderful weekend, wherever you are!

Sunday, June 24, 2012

Sleep, rest, anxiety, and injuries

Switched from Klonapin to Ativan for sleep. The change has helped and I'm sleeping a bit better now. But I'm having the hardest time getting to sleep. I've been having anxiety attacks - small one, nothing extreme - and my body can't seem to relax. And the crappy part about anxiety is that the more you think about it the worse it gets, and it's hard not to think about the way your skin is crawling and how badly you need to walk for a week straight, so you think about it even more. It's a vicious cycle.

I was using music as a distraction and to help me relax. Nothing wild, just classical pieces. But that wasn't helping so much anymore. So now I'm on to sleeping with the tv on again. It's not healthy for sleep, and I worked hard to get out of the habit of needing tv to sleep, but the fact is, it's the only way I can relax and stop focusing on my anxiety long enough to fall asleep.

Since I'm making a point of taking rest periods during the day, I've started letting the dog in bed with me. It's less time he has to spend in his box, and he likes to snuggle and protect me. I like that he's behaving himself a bit more now, well enough that I can actually let him in bed with me (he used to cause trouble if he was in my room and I was asleep...he's chewed on antique furniture...not cool). And he likes getting to protect me. Yesterday, he was awake and alert when I fell asleep, and an hour later, when I woke up, he was still awake. But once he realized I was awake again, he snuggled in and slept a bit himself. He's such a good boy.


I strained my back at work a couple days ago. I was doing everything right and didn't feel anything bad, but while I was cleaning up, something started to hurt between my spine and shoulder blade. I filed an incident report to be safe, but insisted I was fine. A couple hours later, my upper back was really tense and my left shoulder (bad shoulder) was starting to feel iffy. I knew that if I kept up and let my shoulder stay so tense, I was going to start having dislocations and a whole other set of problems. So I asked to go home. Didn't get into the doc until the next day, but it was pretty routine stuff. It was a strain/spasm. I just have to take muscle relaxers and wait it out. But the work comp doc is sending me for two weeks of physical therapy as well. I'm not upset about that. And I'm especially thankful for the option to be able to choose where I go for PT (as long as it was within network). So I'll be going to the place I'm used to, where the PTs already know me and my whacky EDS issues. So I'll spend more time getting good exercise and less time trying to explain how things work for me. And I'll be on light duty at work for two weeks, which I'm fine with.

I also finally had time to go speak with someone in HR about potential job/position changes. So she's calling some people for me and made suggestions about possible positions and how to apply for jobs that aren't posted yet. So that's on the to-do list now. It's not something that will be quick or easy, but it could get me into another, less physically demanding, position, and back to working more hours and actually making money again.


I made birthday cake for a friend yesterday. Felt good to be up and productive, even if it took longer and turned out less pretty because of my back, but cake is cake, and I'm looking forward to sharing it with her tomorrow :)

While my back is cooperating, I need to clean up my mess from yesterday (yup, didn't do the dishes, just threw it all in the sink...that was all I had in me :P ). Happy Sunday all! ::hugs and spoons:: for everyone!

Saturday, June 16, 2012

0-60 in 1 email

My mom emailed me. To tell me I need to get psychological help. That I'm letting my illness take over my life and I'm only going to end up alone as long as others think I'm sick.

I'll never get a boyfriend.
I'll never make friends.
Never get a good job.

Compared me to people with body dysmorphia who believe they were born in the wrong body, who cut off their own limbs or trick doctors into doing procedures that will leave them handicapped.

Said that she believes I'm in pain, but that if I stopped thinking about it, I could have a normal life.

Said that people with really bad disabilities live perfectly normal and fine lives.

I need to seek help.

I want to cry. I feel like throwing up. I feel like I've just spiraled into the seventh circle of Hell. I went from feeling good about myself for taking a nap and eliminating today's pain with natural, non-drug remedies, to feeling like I was in a pit of darkness because even my own mother was tired of my illness (and not for me, but just tired of it being around).

I love my momma. I know she means well. But I feel a million times worse for this than any other time she's told me to just "buck up and shake it off".

I guess I'll have something to talk about with the therapist/psychologist when I start treatment at the pain management clinic....

Saturday, June 9, 2012

Dehydration. Nuf said.

That horrible feeling when you know no matter how much you drink, twice as much will come out, and you will feel like hell.

I hate being dehydrated. And wasting my precious Zofran on nausea that is induced or made worse by the fact that I'm having to drink so much. Stupid, stupid, stupid!

However, it's Saturday. And by golly, it feels like a Saturday. I slept in, had some coffee (decaf - not enough caffeine to make me feel worse, but enough to clear my sinuses at least) with breakfast, enjoying the sunshine (but mostly staying indoors because of the and the pup are only going out in short bursts), did a little paper work, and planning to do some writing this afternoon.


Random side note: my skin is SO unhappy. While my body is getting used to the braces and I've developed some scarring in the bad spots, I still have horrible breakdown issues sometimes. I was up half the night scratching and feeling the open sores weeping (no bleeding, thankfully), finally managed to get myself to get up and put cold towels on my legs and go back to sleep. Woke up cold, but less itchy. Now I'm still having issues with scabbing, water blisters, weeping, itching (not scratching for the most part) and pain. I just wish my wonderful, helpful braces didn't give me other problems. My skin is unhappy today. Hopefully by tomorrow, the worst of it will die off. Once the initial inflammation and itching goes down, it heals quickly.


I hope everyone is having the most amazing Saturday :) Love and spoons and zebra hugs all around!!!

Friday, June 1, 2012

Bad days and some recovery

I kinda hate how fast a 'flare' can take over. Wednesday I was doing as well as any other day, went to get labs done, got breakfast, came home, cooked, ate, rested. Pretty average day. Then in the early afternoon, I started to feel achy. By 5pm, I was hurting all over and just wishing I could go to bed (I was scheduled to work on Thursday, so I didn't want to go to bed at 5 and wake up at 2 am and then have to work a 12 hour day until 8pm). I fought it as long as I could, took Ativan, and was in bed with numerous pillows by 7:15. I think I was asleep before 8. And didn't sleep much through the night. I kept waking up, I was sweating, I was in pain, my brain was all foggy, I was miserable. When 4am rolled around, I took Zofran for my tummy (I take that in the morning before I get out of the comfort of my bed that way I feel less barfy and more like eating when I get up), took tylenol for pain because it was the only thing I could reach. By 4:45, I felt worse, called out sick to work, and debated a trip to the ER for fluids and pain meds.

I was able to get up and go to the bathroom without too much incident, so I dug into my emergency meds and decided I could get just as doped up at home in my own bed as I could in the ER (and it would cost less). The stronger nausea med helped, as did the Percoset, but basically it turned me into a narcoleptic zombie and I slept all day. I woke long enough for some lunch between doses and then again in the evening, deciding I needed to be up for a while (both for the blood pressure and because the pain was going away so I needed to get out of the bed).

Now my tummy is still very unhappy (I see the new GI on Monday....just keeping my head above the water until then). But the pain that was trying me finally went down to a dull roar and I took Advil the rest of the night. Today my tummy still sucks and I'm half wishing I had gone to the ED for fluids, because I feel parched and lousy.

The goal for the next three days is simple: be a bad ass and work two full shifts in a row (because I never seem to accomplish that), whine and suffer at night, go to the doc on Monday (afternoon, thankfully, so I can sleep in), and then pass out and refuse to move for a few days following. Going into a weekend at work is hard enough when I'm feeling relatively well. It downright sucks when I'm not feeling great to begin with. I have my lunches made and packed, I've got Gatorade because I overheat and sweat more at work. I've got my pills already sorted into a little granny organizer ready to take the second I get home, I've got uniforms all laid out for the weekend so I don't have to fuss with laundry or getting things together. I have done everything in my power to make it as smooth as possible. Now I just pray that I can make the next 3 days happen!


My new favorite thing right now is a smoothie every night as my last snack of the day (usually an hour or so before bed...not too heavy, try to get it digested before I lay down to minimize reflux, but close enough to bed that hopefully I don't wake up hungry in the middle of the doc threw in a thyroid function test on my labs Wednesday). I got frozen fruit (no sugar added) because it's cheaper than fresh and I'm broke, a big container of vanilla Greek yogurt, and milk. Quick and easy to to with the immersion blender (because I hate cleanup) and it gets a couple servings of fruit and some good yogurt (and protein!!!) into me. Definitely a winner. It still upsets my tummy, but less than some of the other stuff I eat or drink, and this is loaded with healthy goodness.

Still not eating much meat. Just too hard to digest. It has been an issue for me for years (and I was even a vegetarian for a couple years), but the last two months have been nothing but stomach pain and nausea and reflux and meat is just too hard on it. So I've mostly cut that out of my diet. I love meat, but it's not worth the pain.


Got the second order of finger splints (oval 8 splints) in the mail this week. I love them. I have them on 9 of my DIP joints, a couple on middle and ring finger PIP joints, and I ordered a couple for my thumbs too (but I don't need those as much). I think I can get away with 9 of these at work, and then keep the extras around in case I have a bad day. I have no idea what my boss is going to say about it, but I did tell her I'd be getting them at some point. I know rings are not allowed at work for hygiene reasons, but this is also a disability support issue, so I don't know where it will go.


My pup is doing an excellent job of sleeping on his comfy cushion next to my chair and protecting me (what a bum) so I'm gonna go clean up the kitchen, make a snack, and get back to my book.

Happy day everyone! ::hugs and spoons:: for all!!