Medical Alien

One of the "fun" things about EDS is that it rarely ends with just that diagnosis. Since EDS is a collagen disorder it it effects parts of the entire body. For me, it started with the EDS. That led to a POTS diagnosis. Often, those two go hand in hand. POTS means that depending on the position of your body (ex. going from sitting to standing) your blood pressure will drop and your heart rate will rise - often this results in a dizzy spell or passing out. Well the cardiologist that diagnosed me with that forwarded me to an electrophysiologist because my heart rate was so high. Well, that doctor had me wear an event monitor for a couple weeks. It's super embarrassing to have wires coming out of your shirt and a little machine on your hip that occasionally beeps. Nevertheless, he told me that my heart rate never dropped below 100 and I had 3 episodes where it was really high so he diagnosed me with Inappropriate Sinus Tachycardia. Sounds funny, right? My heart is inappropriate. hah. :) But the options for that are live with it (sucky), try natural methods of relaxing the body such as yoga (kinda cool), and surgery that could leave me with a pace maker (I vote 'no'). Well this led to looking into Dysautonomia. We'll see what the doctor has to say about that one.
If this sounds like a whole lot of doctors and diagnoses you're right; however, this is far from abnormal for someone with a disorder like EDS. When it's something that effects you're entire body there's always going to be something new going on. That lovely comic pictures is why I believe we should not be medic zebras but medical aliens. It says "I must admit, yours is one of the most baffling cases I've ever seen". hah :) At least with zebras, once your realize it's not a horse, people recognize the zebra. With these kind of diagnoses, even the doctors tell you they don't understand. Also, they probe you like an alien because they are fascinated.

Sequential Compression Devices (SCD's)

Ahh SCD's. You beautiful little things, you. While at the hospital they had my legs in SCD's (leg squeezers) and I was elated. I haven't had that much lack of pain in a very long time so when I had an appointment with my pain doctor about 2 weeks after surgery I mentioned this revelation to her. She said that our lovely friend EDS makes my veins stretchier than the average vein making it difficult for the blood to pump how it should. So all that pain and my icicle of feet are tied together in one mess of an EDS bundle. Now you'd think there would be a simple solution here - get SCD's for home! Well, the doctor told me to call the insurance company. The insurance company told me to call the medical supply company. The company told me that I have to have one of two diagnosis to qualify for insurance to pay - now they are calling my doctor to try to get that diagnosis... or figure out what else to do. Typically I would try to find a way to shell out the dough and just get it myself but they are so expensive! I tried asking for some exercises or an alternative solution that wouldn't require more specialty medical equipment but that was a bust.
By the way, did I mention how sexy SCD's are? hahaha : ) I chose that picture 1. to show you all what I'm talking about 2. because I find it hilarious that she's flirting with her eyes while wearing them.

And We're Back...

The EDS train makes it's appearance yet again. I don't know why I thought I could go this long with out moving regularly and not have any issues. My feet and knees have been having some difficulty but I figured it was just from sleeping with my joints in awkward positions all day for about a week straight. Good meds=good sleep. Well last night my leg decided it had had enough and the pain woke me up out of a dead sleep. I was in so much pain and it was spasming so hard that I couldn't keep it straight. I've been staying with my family since surgery so I didn't have my compression socks or braces here so I ended up sleeping in some tight wool Browning socks with a heating pad on my leg. It's doing a lot better today but man oh man did I think I was dying last night. I was in  that mind set of "ER vs Sleep" - where I'm so tired that doing anything sounds like a bad idea but not going to the ER could kill me. So once I was sure I wasn't dying of a blood clot or an embolism I went back to bed. Positive thought: at least my legs work?

Things I Didn't Expect about Jaw Surgery...

1. The bloody nose. Apparently the way that the surgery is performed makes it so a lot of blood comes out of your nose. I mean a lot. Every time I moved to get up my nose would gush. Then it would make a nice little cave of crystals in my nose making it even harder to breathe... which already is quite the task with the swelling. For those of you not having the surgery done, imagine having a nice cold and not being able to really breathe out of your mouth. I imagine it's similar to drowning.

2. Not being able to blow my nose. Not because it's swollen, but because the stitches are all around the top of my gum line and the air gets under them and flaps and bubbles. Honestly, it's the weirdest sensation to try to describe. Afterword I could push on my cheeks to get the air out of them... then the nurse decided to tell me that blowing my nose wasn't a good plan. I feel that might have been something worth knowing prior to actually doing it.

3. Hearing my ear drums. The swelling got up into my ears to the point where when I move my head I can ear my giant ear drums hit the inside of my ears. It's the strangest thing. And I'm sure I'm driving everyone nuts because I can't hear anything below a quiet yell.

4. The incredible want for crunchy food. Seriously. Get over eating crunchy foods for a while and get used to just swallowing. What I would give to be able to eat a sandwich with pickles and chips on it right now...

5. The constant feeling like I'm about to cry. I knew there would be pressure under my eyes but this is ridiculous. I'm not sure if it's the swelling or the pain but even just sitting here I could bust out in tears for no particular reason at all.

6. How different food tastes. Everything is so spicy right now! Okay, baby food doesn't really have much flavor but when you start blending real food again expect a whole new flavor pallet. Going from bland to slightly-less bland is a big enough shock to the tongue but trying slightly spicy food is like POW!

Aaaaahh Sadness...

This is my least favorite part of any surgery, and I'm sure my EDS-ers would agree...
I'm finally getting to that point where I feel good enough to WANT to do something but I really can't.The swelling in my head in combo with my POTS symptoms is making the world a tilt-a-whorl so I'm pretty set with sitting. I can't manage to keep a nicely regulated body temperature across the board. This is my first surgery since the POTS diagnosis so I'm sure it's a normal thing there.  My head says that I should be doing work and running errands but making lunch is enough to knock me out for a few hours right now. So what do I do when I'm stuck in a chair for hours at a time, by myself, with very limited talking? The dangerous act of thinking. Thinking about everything from past mistakes, to art I want to try to make, to people I wonder about... I start second guessing the productivity of  my very existence. Ahh, deep. But that's where I'm at right now. And this blog gives me purpose. Stay blessed all. I'll post more soon when I'm a bit more chipper.