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.