Just another random EDS update (mostly so I can remember things better :P )

Setting my mind to call the cardiologist/electrophysiologist Monday to make an appointment for a tilt table test. We agree that my symptoms are all very dysautonomic, but testing is still necessary. So now's the time.

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Felt kinda poopy this week. I'd been having a lot of down days the last few weeks and I knew that I needed fluids but kept putting it off. Yesterday, after three days of feeling really draggy, my heart rate started shooting up when I got up and my blood pressure was funky in several different directions. It was time for a trip to the ED for fluids.

I took a Klonapin to help chill me out (knowing that I'm doing worse and knowing I'm going to the ED again makes me a little jittery, plus, Klonapin usually helps bring my HR down a little). And dad had just gotten home, so he drove me there and dropped me off so I wouldn't have to drive while I was feeling funky.

They got me back right away (they weren't flooded and chaotic like last time I was there). And even though I always baffle people with the EDS and accompanying cast, things usually go pretty smoothly.

I was more dehydrated than I realized - starting the IV wasn't as smooth as it usually is. I told her where I had a good vein that was a little deep, but still strong and out of the way of any joints. She got the catheter halfway in and did my blood work from that, then when she tried to advance it further (we both felt it wouldn't work) and flush it, it blew. Bruise number one. 

Second attempt was in my hand. Even though my fingers move around a lot, I still don't have major problems with the back of my hand (compared to wrist, thumb, AC, joint-y places). Again, tried with a small catheter, but the vein was just not plumping up or holding up well and it blew. Bruise number two. Ouchie.

So I gave in and let her use the visible and easy vein in my AC space. I realize that it's easy to just start there, but putting them there usually results in not moving the arm and subluxing as a result. Luckily, she was able to shoot high enough that I could still move my arm a bit and still dump fluids in quickly (my body sucked it down). Bruise number three, but at least that one was successful.

She was very understanding and I felt bad for her for having to do so many attempts. After the second attempt failed, she was about to get someone else to come in and try, but I know what that's like. It was easier for everyone to just do the AC stick and get it over with.

And my fluids went VERY quickly. Under 45 minutes for the first liter. And I got a shot of Zofran so I could drink my gatorated (another liter) and nibble a salty snack. I still hadn't peed by the time the first liter plus gatorade was in, so I asked if we could hang another long enough to make me pee. It only took about 300mLs of that one. I peed, I felt better, I got to go home. 

The physician who saw me last night has seen me before. He's very kind and understanding. We made jokes about me being a junkie for that normal saline. I'm glad he's able to joke with me about it, because I can't imagine what it's like to be a physician who doesn't really know much about what's going on with a patient who is asking for specific things (but I never ask for drugs, so that helps).

And I did tell him that I planned to ask my fab PCP about a script for routine fluids at an infusion center to help prevent these crashes. I'm really really hopeful at this point that we can read some lit together about IV fluid treatment for EDS/dysautonomia/POTS/chronic fatigue/chronic pain and come to an agreement about how this could help me. Get me into an infusion center at least 2 times per month, but maybe even as much as once a week. And if that all seems to make a difference, go for putting in a port and doing treatment from home with home care assistance and delivery (home care nurse to help with accessing the first few times and observe me accessing my own to know that I'm doing it right). I would love to be able to get a port, get my supplies and fluids delivered to my house. Infuse every other day or so from my own home so I'm not wasting energy and time to go to an infusion center, and hopefully just find that I have more energy and feel better more often.

I realize that it would cause some restrictions and some problems along the way - travel would be more difficult with supplies and making sure I had documentation for anything if need be, making sure I always had time to infuse no matter where I am so that I don't have crashes, etc - but I feel at this point that the benefits far outweigh the risks and I'm hoping everyone involved in my care will agree. I know I'm a long way from there, but I'm willing to do whatever it takes to have the best days possible. 

I have this disability, it does NOT have me. 

Feeling well today though. And I'm so glad because it's girl date night with Megan! I love being able to get out and do fun regular things with her. We're going to head to the mall to Lush for some beauty and pampering, and then to a movie (Step Up Revolution! YES!) and then dinner at Cheesecake Factory, because I've never been and this was Megan's birthday gift for me (we just keep getting setbacks and wanted to make sure that when we went, I was feeling very well to enjoy it. Bless her for being so patient with my body's unpredictability). So I'm looking forward to a normal Friday night out with a girlfriend!! This is what I work so hard for each and every day - to get these good and normal days!!

Big thanks to EDS for doing insane things to my body

The cardiac event monitor is still on (I take it off on the 16th, counting down the days). I have no skin left around most of the electrodes. Once I get this thing off, I'm going to heal up the sores and then pamper my skin like crazy! And I've given up on the hypoallergenic/more sensitive electrodes...at this point, they all suck and they all feel like they're made of battery acid.

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The pain management doc prescribed me Cymbalta to try for pain when I was there about 2 weeks ago. And for whatever reason, it took forever to get filled. I kept whining about how long it was taking and that by the time I got it, I wouldn't know anything by the time I saw the doc again.
So glad that I was proved wrong. I finally got my hands on the meds Tuesday evening (and it was prescribed for twice a day) and took it that night before bed, with the rest of my PM meds.
I woke up at 0500 shaking and feeling like my body was trying to turn inside out. It got worse as the day went on with the second dose. Oddly, caffeine helped ease it a bit, but that was the only thing I'd taken in for half the day...my appetite was GONE. I wound up taking Klonapin halfway through the day to chill out the anxiety and felt better, but still no appetite.
Same thing the next day; a bit less shaking, but still very anxious. Took Klonapin to get me through the day again. Decided that I probably hadn't noticed problems with the first dose because I took it with my bedtime meds, which includes Ativan, which is why it didn't hit me until early morning when the benzo wore off.
By day three, Friday, I felt like death. I was incredibly depressed, still a bit anxious, and felt like I was just trapped inside my body. I couldn't laugh - funny just didn't feel funny. And I'm a giggly person, so that was scary. And knowing that something was wrong like that felt weird too.

I went to the cardiologist to discuss how I was doing since my syncopal event and how I was doing with the monitor. He said that so far he hadn't seen any dangerous rhythms on my EKG strips. There had been some sinus tach, which isn't all that bad since my HR tends to run higher than it used to. He said there was a possibility that because of my previous ASD repair there was some atrial tach too, but he couldn't be sure. And the reason he wouldn't have seen that during my surgery was because anesthesia suppresses that. But all in all, not a lot to worry about right now. Which is good.
He also said that since I'd obviously had some dysautonomia but never had any official autonomic testing, he'd like to look into that (tilt table test). But with the way I was feeling with the Cymbalta, we agreed to hold off on that until I was feeling a bit more like myself.

I also saw the pain management doc Friday afternoon. He told me if the Cymbalta was making me feel as bad as it was, there was no reason to keep taking it and things getting worse. Thank God! He said that there was nothing really abnormal on the MRI images of my lower back and hips (which, good, but still...for that much pain, that's surprising). But at the time of my appointment, my pain was currently around my SI joints, so he offered to try some cortisone injections in those joints.
Thanks to EDS, the local didn't help as much as I would have liked (on the left side, I had pressure, but on the right side I had a ton of pain and felt the needle all the way down to the joint). But it's a quick procedure and I was being cleaned and bandaged within minutes.

Came home and napped, had a good amount of pain from the injections when I woke up, which wasn't shocking, just not fun. So I can't get comfortable on my side as much as I'd like to (since I usually sleep on my side). I have a lot of bruising at the injection sites and my butt crack just hurts. All in all, not the worst pain ever.

The doc said it would take up to a week for the steroid to work and to come back in 2-3 weeks to decide if it was worthwhile and something I wanted to do again. I have no idea if this will do any good and I know that it's not usually something that works well for bendies like myself, but I figured I would never know unless I tried.

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Even though I'm still essentially on light duty at work because of the monitor (I've been secretary or psych sitter), I decided to take the weekend off. While I need the money, I just felt horrible and my body has had one hell of a week with the Cymbalta and then the injections. I'm glad I took off too. I still don't feel like myself today and I've had to force myself to eat (though after some veggie pizza, I actually had a craving for ice cream!). And my butt is sore enough that I think sitting in an uncomfortable office chair for 12 hours would have made me miserable all day. I may have to pick up some hours elsewhere in the week if I can.

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And through it all, my puppy has been taking good care of me. He napped with me yesterday when I got home from the doctor. When he was done napping but I was still in bed, he went and sat at the end of the hall with his bone and just waited for me. And today, I haven't been allowed to take a step without him watching out for me. He's a good boy. Life wouldn't be the same without a doggy around.

Update-looking things

I was starting to feel pretty tired over the weekend, which, you know, I have EDS and various supporting cast, so not a big deal. Monday I was really dragging and was sure that I was going to crash hard by the weekend (but the weekend was mine for the taking, so it was fine). All I had to do was make it to the weekend. But I've had a busy month and another busy week ahead. By midday, I'd talked myself out of the weekend and just decided to let it happen. I canceled my PT for Monday, and called off work for Tuesday. I had a GI appointment early afternoon and then I could go to bed for as long as I needed.
I took a pain pill to help aid deeper sleep and help prevent pain that comes from too much bed rest. And I felt soooo much better by Tuesday morning when I got up, but still opted to spend a couple more hours in bed while I had the opportunity.

Felt marvelous! Got up and cleaned the kitchen and thought I'd tackle some produce that I'd purchased over the weekend (I usually just spend time washing and cutting up everything so that I can just pull out containers and go). And again, still feeling so great considering I'd been on my feet without shoes or braces for an hour.

I was making a salad while Dad made his supper, sipping juice, munching on yummy cold veggies, and all of a sudden the room spun and I felt very nauseated. Dad was cracking an ice cube tray so I asked him to pass me one (thinking the cold would help calm things down, usually works pretty well). But by the time he'd passed me the ice, I'd decided I had to throw up. I went upstairs and by the time I got there, I was feeling very dizzy and confused and disoriented and had tunnel vision and just felt horrible!

The nausea was getting worse by the second and it was making my stomach hurt. I sat on my bath chair in front of the toilet so I would hit the target and because I was so dizzy I couldn't stand. By then, I had mostly sweat through my shirt and was starting to drip on the floor.

I tried to gag myself to throw up because my stomach hurt so bad from the intense nausea. No luck. I was trying to calm everything down by doing some deep breathing. Then I leaned forward and rested my forehead on the toilet because I was shaking so hard I couldn't hold myself up, and my body knew enough to want my head between my knees (glad with all the brain fog, at least stuff like that sticks...head between knees to ease lightheadedness...it wasn't cognitive, just habit). The cold felt good but I felt like I was spiraling out of control of things quickly and felt SOOO scared - I knew I was in trouble. I remember thinking I needed Dad to call 911 because something was very wrong. Then I passed out. It was only for a few seconds, and then symptoms started going away pretty quickly.

I was able to breathe through the nausea, the dizzy feeling and confusion were letting up, the sweating had stopped (but I was SOAKED). I was able to sit upright again, but still felt really funky. I called my dad (gotta love technology - cell phone in my pocket, called Dad downstairs) and had him come upstairs before I got up. I also had him bring my blood pressure cuff to me because I didn't want to try to stand and wind up on the floor. My blood pressure was low. 97/65. Not particularly dangerous. But ever since my ablation in February, I've not experienced any blood pressure changes at all. It runs slightly higher than it ever has in my life and is always in a very tight range, regardless of what I'm doing. So the fact that it had dropped so much made me think that it was probably even lower before that.

This whole episode took place in about 5 minutes. So if my blood pressure had dropped, it did so very quickly. I don't know if a fast drop caused the passing out or if the passing out led to low pressure, but I know the two had to be related.

I started feeling pretty good quickly after that. Even went back to the kitchen for my salad after sipping water for 20 minutes.

I called my doc the next day, but found out she was out of town (for the next 2 weeks). They said I could see one of the other GPs in the office, but I elected not to. I've been seeing the same doctor for a year and a half and we still haven't covered all the crazy EDS bases. It's a lot to go over in a 10 minute appointment. Especially when I have a funky body that the docs don't know a lot about (not that they're incompetent, just that it's difficult to actually find a doc well versed in EDS). So I called the cardiologist who did my ablation procedure. He told me to come into the office and he'd put a monitor on me.

Good deal, that's what I was hoping for. I didn't actually see the doctor, his medical assistant hooked up the monitor and I made an appointment to see him in a couple weeks. While I don't want for anything to be wrong, if there is, I'd like for it to show up while I still have this itchy heart monitor on so we can deal with it sooner.

And now, I'm going to go take off the dreaded itch machine for a few minutes and let my skin breathe before I stick new electrodes on again.

Random bendy updates

I'm to the point now where I don't like my job. At all. Just going in there knowing that I'm going to be in pain and making myself feel like crap makes me want to quit.
But I need the insurance. It's the only option I have for insurance right now. And I need what little money I'm making there. So I keep going. And can't stand it.

I don't know what else I would actually do. I'm not qualified for anything else that would require less torture to my body. All I've ever done is nursing and fast food. And I can't afford to return to school - I'm not getting my bills paid as it is. I feel like I'm stuck in this horrible loop.

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PT has been going well. My upper back doesn't really hurt anymore. But I'm still having pain from my ribs sliding around on my spine a bit. And my left shoulder is just my left shoulder: pretty useless, always in spasm, constantly bothering me.

But I did have a wicked not-fun first the other night. I was having a lot of pain under/behind my shoulder blade while I was driving home from work, and by the time I got off the highway, I couldn't take in a deep breath. I had completely dislocated a rib. It was really high up under my arm, pressing inward on my lung. It felt awful. I was too tired to go to the ER and didn't trust them to take care of the rib without messing something up (I trust my doctors who I see regularly and they know me and my EDS better...I don't trust ER doctors to provide the same level of care because they often know little to nothing about EDS, and little about me. And one ER doc has already driven the point home by sending me away 4 times in 2 years, twice in a week, for a heart rhythm that was potentially very dangerous and needed surgery before it got worse. It was likely from EDS and every time I suggested my EDS as a cause for the problem, he brushed it off. He never took anything about EDS into account. So I request that he never see me again because I can't trust him to properly care for me.). So I took my evening meds (which includes Ativan), plus a muscle relaxer, got my arm up on a pillow so I could breathe a bit better, and eventually passed out from the medication and sleep deprivation. It was back in place by morning and felt so much better.

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I have my followup with the new gastro doc on Monday. I'm hoping this will continue moving in the right direction. He put me on omeprazole when I was there last, which I've never had luck with before (acid reducers usually do very little because a lot of my reflux is neutral in pH, so the acid blockers don't help that). But I feel like I've had some kind of improvement from them this time. I feel like maybe I'm having less chest pain at night. But this morning I still felt like barfing and had half my stomach in my throat. I'm not sure if it's helping enough to justify the cost (it's $20/month, which seems like nothing until you have other meds too, and doc appointments, and everything else). But I'll stick with it for a bit longer. I am hoping we can talk more about doing a tube placement as well. I would really like to be able to do fluids in a way that's actually helpful, because drinking isn't getting enough in me and makes me sick. I just need a better way to stay feeling well.

I also see the pain management doc this week for the first time. I'm really looking forward to this and hoping that whether he's heard of EDS or not, he can work with me on solutions. He's an anesthesiologist, so hopefully he will be able to understand when I tell him that EDS and anesthesia typically don't go well together (granted, I've not had a ton of it in my life - I know that I can't take Versed, and locals (novocaine/lidocaine) make me feel like crap because they jack with my heart and I feel like I'm going to shake out of my seat, but propofol works appropriately, so hopefully that will lend some kind of knowledge as to how we need to start - and I'm not actually looking to take propofol, I just know that it works, so there's gotta be something for pain that has a similar action). I just really really need something for pain relief. I'm getting to the point where I just don't want to do anything anymore because I'm always in pain and it seems like my only options are to deal with it or be drugged out of my mind and useless anyway. I'm convinced that there's something more I can be doing for myself to make life more about the fun and enjoyment and less about the constant pain and worry.

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Well, that was a bit more depressing than I planned to be. I'm just in a funk right now. Don't have enough support here, can't afford to move home where I know more people, the one person I'd love to see right now lives too far away, and again, money and pain are trying to rule over everything.

Today is going to be another lazy mindless day though. I've got a book here that I can finish before lunch. Have a stack of others in my room. And might even do a little writing if my back is feeling up for the challenge (I always hunch over when I write, can't seem to break the habit, which is part of why I don't write much anymore).

Happy Sunday everyone. My Bently boy and I are going to take it nice and easy today. Hope you all do the same :) ::zebra hugs and spoons::

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!

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.

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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.

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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!

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....