That Dirty Dark Topic...

When I first started going to a pain specialist for my EDS, they sent me to a counselor because they said that pain can effect other areas of your life. I didn't want to write on this subject because admitting that you're not always perfect mentally can be difficult - but for the sake of helping people understand what we go through, it's important to mention it.
Here's a few facts...

1. "[In one study of Ehler Danlos Patients, o]ver half of the adults (56%) had been in outpatient psychotherapy some time during their lives, typically for depression/anxiety and relationship difficulties; 22 (54%) reported a history of at least one episode of significant depression, 19 (46%) had used either antidepressant or anxiolytic medication. Three adults had been hospitalized for psychiatric difficulties; 2 of whom had attempted suicide. Five patients reported a history of alcohol or illicit drug dependence and treatment. In all, 29 adults (71%) had received some psychiatric service (medication or therapy) at some point in their lives." EDNF Article
2. "[In EDS patients,] problems with anxiety, depression, and interpersonal sensitivity were dominant." EDNF Article
3. "Diagnosing depression in the chronic pain population can be a tricky task because the two syndromes share many common features. Fatigue, sleep disturbances, and deficits in memory and attention are characteristics of both disorders." PsychiatryOnline Article

Keeping on top of your mental health is just as important as your physical health. It's easy to forget to look at the things you CAN do rather than what you CAN'T. In order to deal with this personally, I tried writing out things I still can do. I also purchased the book You Are Good At Things. Corny, I know, but it's a good thing to remember.

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.

Just kidding (day 2 cont)

Today isn't good at all. I'm starting to bruise. My face is unevenly swollen. My face is basically permanently sad... but I'm not sure if that's from swelling or pain.

Hospital (day 2)

Today is already MUCH better. My nose isn't bleeding as much. I really wish I had been forewarned about that one. Also, I'm in love with these pressure cuffs on my legs. They are like a constant leg massage. The nursing staff here is fabulous. I've never had a better hospital experience.
I was upgraded to a full liquid diet which is good because I'm dreadfully hungry after not eating since Friday. Oh man. Someone go eat for me. But at least I can drink an ensure today and snag some dairy free icecream. I promise its better than it sounds. There's also a few other things I can have but I'm pretty limited for a while. The pictures are of the progress
Ession of my face and of my menu for the day. I'm already feeling significantly better. Thank you all for the thoughts and prayers.

Saving grace

My aunt Cathy brought this gem to me yesterday. It has been so useful! If you have face surgery, I would make the investment. Also, snerv is my dad's trade mark drawing of a pig. Enjoy. :)

Right after surgery (day 1)

I woke up bawling and my face was very swollen. They took a wedge shape bone from both sides of my upper jaw. I have stitches all of the way around my top gums and my nose has been bleeding pretty badly. I have to drink clear liquids for 24 hours. I learned that knowing some basic sign language is really useful. With the medicines they have me on, my hand writing is a hot mess sometimes and talking is not even an option.

The first picture is my first pic after waking up. The second is my dad rubbing my head. It felt really good. I was so sore. The third picture is me trying to learn how to "eat" from a syringe. It's a lot harder than it looks. I'm not wired shut but I have bands and can barely move my mouth. The hardest part is learning how to swollow with a different mouth shape. The fourth is me completely zonked out with ice tied to my face.

Before and After Pic

Digitally altered before and after photos of my jaw surgery tomorrow. It's already weird seeing my face look different.
Updates coming this week.

Sorry I've been MIA...

It's been one heck of a few weeks prepping for my jaw surgery... joint #5 (woo! - sarcasm... obviously). Being in college with EDS is a circus at best most weeks but even more so when trying to squeeze in all speaking projects into the week before surgery and rearranging midterms for just after. Oh boy. I've been booked straight through to bed lately with papers and projects galore. And my "free time" is all doctor appointments or pre-surgical prep.

The good part about starting this blog when I did is that I'm going to be chronicling my journey through my surgery with you all. Pictures and all. I'll try to let you all know what taste good blended together, how the recovery process goes, and all the gritty details.

Stay tuned and stay blessed.

Doctors Defined

Previously, I wrote about the type of reactions you get from friends when you tell them about EDS. Well, I forgot to tell you about the doctor categories.

The Archaeologist - This is the doctor that treats you like a rare specimen. They could very well be anything from a joint doctor to an allergy specialist but regardless of their area of specialty, they find you fascinating  They will ask you to perform all of your party tricks... that they know you shouldn't do ;)... however, you leave their office feeling like a rock star

The Skeptic - This doctor is skeptical of the existence of EDS at all... and is more commonly known as ignorant. Blunt, I know, but these doctors belittle your condition while making you feel as small as an ant. Just because a disorder is rare doesn't mean it doesn't exist, or isn't as bad as you claim. I was told by one doctor that all it meant was that I was flexible and that probably half of all people have it... he needs to go back to school.

The Blank Slate - This doctor is like the majority of the world in that he hasn't heard of EDS. Let's face it, unless you are incredibly intelligent  you won't be able to remember everything you learned in school.Yes, they have to read the books and pass the BAR but unless you have come in contact with an EDS-er, he likely doesn't have much of a reason to know the ins and outs of our disorder.

The Partner in Crime- This guy will be your best friend through your treatment. He can be anyone from a geneticist to a massage therapist - as long as he understands EDS or is willing to dig in and learn about EDS in order to treat you, then they qualify under this category. They believe you, support you, and want to help you.

Independence

As I come to the end of college and that time when I really start my adult life, the frustration of not being able to be completely independent is rolling in. I feel like I'm a 16 year old girl stomping my feet and telling everyone "I'm an adult! You can't tell me what to do with my life!" but then I still need someone to help me get groceries when my body won't cooperate. Today it hit pretty strong when I went back to the heart doctor to talk about my new POTS diagnosis and I got upped to the highest level of the medicine I'm on. Oh, and did I mention I'm hooked up to a heart monitor for a good month? The battery of tests never ends. I get the heart monitor off just in time to have jaw surgery. *sigh. Anyone who thinks this disorder "isn't that bad" needs a reality check. I'm thankful for all of the things I CAN do but man oh man does EDS take a toll on your body and mind. The only thing it can't touch is your soul. Stay strong my EDS-ers.
I'll post two this week to give you something you can actually share with others or that will help you in form.

Stay bless ya'll.

Self Defense

The majority of my posts have been light hearted but I need to post something more serious this time around. Yesterday, something really horrible happened in my small town that made national news - if you want to read about it I will post a link on the bottom. I don't want to go into detail about the story but rather focus on the fact that the victim was able to escape a moving car and run to safety. I started thinking about how vulerable all of us EDS-ers would be in such a situation. There's a good chance that we would have ended up falling apart just from jumping from a moving car... but then having the stamina and flat out ability to run to safety? This got me thinking, what should a person with EDS do to protect themselves from a situation like this. I considered taking self defense classes but with my body, I'd probably end up injured just from the classes. They do, however, offer disabled self defense classes (you would have to look around your area) and there are quite a few YouTube videos on this subject as well. Take precaution not to injure yourself in the process though. ;)
Personally, I carry a bright pink can of pepper spray on my key chain but that wouldn't do me any good in a situation much worse than a creep getting too handsy. I don't feel totally comfortable carrying a gun but I know some people are considering it after this occasion. I was thinking about a cute pink taser. However, this lipstick stun gun looks nifty too. They also make some pretty cool self defense key chains.  But of course the best defense is praying that you never need to use any of these products. ;)

What do you all think would be the best route? Do any of you EDS-ers take any precautions?



Link to the crazy story -
http://www.themorningsun.com/article/20130118/NEWS01/130119721/suspect-in-cmu-kidnapping-killed-by-police

Food... Sort of...

Some people forget that the jaw is a joint, and in turn, can have the same difficulties as any other joint to a person with EDS. Personally, I have TMJ, a small overbite, and stretched ligaments in the joint itself. The big blow came when I got into a car accident a few years back and clenched my jaw. It popped the bugger right out on both sides.
So now, with 41 days until my jaw surgery, I figured I should start shrinking my stomach and start finding recipes that taste somewhat like a real meal. Soup is always a good place to start. I found some ones that are mainly broth and a couple that wouldn't be terrible blended. Applesauce is pretty much pre-chewed (*gross thought, I know) so that will do. I got a few nutritional drinks to try and so far the Vanilla Ensure is my top contender. In a packet of recipes sent with my pre-surgical information, I found a recipe where you blend peaches, juice, cinnamon  and nutmeg to make it taste like peach cobbler. Worth a shot, right? The thing I'm not looking forward to is the meat-based baby food. It said to mix bullion with it to thin it out and make it - well - bearable but I'm still a skeptic and working up the gusto to try it. So far I have the suggestion of cream of wheat and protein smoothies... any more ideas? Leave suggestions in the comment section below! Anything - no matter how crazy - is welcome! I'll be writing reviews and surgery updates for you all to follow. I had a hard time finding recipes so I'm going to try to compile as many as possible on here.
As always, stay blessed!  
(*Side note: I can't have dairy, but feel but free to post recipes or ideas for those who can though just as a resource!)

Friends, Family, and Foes... Trimming the Fat

Sometimes you have to let people go. It could be your best friend or your cousin you've known since birth... if they aren't supporting you, they don't deserve your companionship. We struggle and fight every single day of our lives for understanding and the people who are closest to us need to be the ones that hold us together when we start to fall apart. They are the ones that offer to help pay for your wheel chair when you can't afford one... not the one who puts you down for needing one. Out of all the pain that we go through on a daily basis, the pain of having a friend or family member not believe or support you trumps it all. If you are reading this as someone who knows an EDS-er or any Zebra, do not roll your eyes or ask us why we aren't doing one thing or another. We don't choose to live this way. If you find our condition as a nuisance, try living with it. I guarantee you that it's more of a nuisance to us. If you are reading this as an EDS-er, talk to the person in your life causing you anxiety first, but don't be afraid to cut off necessary ties. The last thing you need is someone making you feel guilty when you are doing all you can to survive every day.


Here's a happy little video about part tricks to counteract my depressing post...

1000+

I have over 1000 views! What a great way to start out 2013! I've only had this blog for a short period of time to raise awareness and provide some tools and personal experiences for EDS-ers and non EDS-ers alike. I couldn't do it with out you all. Thanks again. Praise be to God.
-Stay blessed.

Gifts for EDS-ers

Okay, so Christmas just passed us (and this post might have been more relevent about a month ago) but it made me start thinking of the people who shop for EDS-ers. This might seem easy until you have to actually shop for one.

Good Ideas!

• Braces - If you are close with an EDS-er, ask the person if they currently need any braces. People with EDS often have support braces for nearly every part of their body but they can run up a hefty bill. It might come as a surprise but this might be an EDS-ers favorite gift of the season.
• A Donation - There currently isn't much known about our condition so making a donation to EDNF (the Ehlers-Danlos National Foundation) would not only benefit us in the long run but would also benefit our friends and family.
• Pampering Items - Basically anything you might find at Bath and Body Works would be practical and boost our spirits. Body soaps, bath salts, or bath bubbles will be nice on days when we just ache all over and basically spend the day in a hot bath. Lotions are good when need to rub out our muscles or have the winter dry skin. And let's be real, what girl doesn't like a little smell-good.
• A really soft blanket - When you're sore, having a really soft blanket to wrap up in is like having a big ol' hug from your best friend. 
• Gift cards to do something fun! -  Yes, we aren't always the most reliable friends but we do enjoy the time we get to spend with you! Slip a gift card into a card and write something like "hey! I'd love for you to be my date to (insert movie title) some time this week!" That way they can still enjoy friend time but with a bit more flexibility in the schedule.

Bad Ideas :(

• A Massage - This might seem like a wonderful idea but many of us already go to therapeutic massages on a regular basis - if we can tolerate them at all. I have heard people that swear by them and people that were made worse by them. I would steer clear of them as a gift just in case.
• Video games, knitting tools... - Everyone with EDS is different so some of us can do activities with fine motor movement of the hands. However, some of us can't. If you notice that the person you are buying for has pain with things like writing or typing, try to avoid things that require repetitive small movement of the fingers.
• Tickets to a specific event - As I've previously mentioned, EDS is a very unpredictable condition. I could be chipper and walking up a flight of stairs one hour and be on the couch exhausted with a dislocated hip the next. That makes making plans for a specific date and time difficult and frustrating. There's nothing more infuriating to me than when I know I should be having the time of my life but either can't enjoy it or had to skip it altogether. 
  
  
  *If you would like to add to this list please leave a comment :)