Ehlers-Danlos Syndrome Awareness Month!

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In honor of Ehlers-Danlos Syndrome awareness month, here’s EDS fact #1 (provided by the EDNF): Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. 

The mascot for EDS has become a zebra or zebra stripes. The reason behind this is because EDS is what’s considered a “zebra diagnosis” aka a surprise, rare diagnosis. This is based on the saying “when you hear hoofbeats behind you, don’t expect to see a zebra” because the more likely and logical explanation would be that they belong to a horse. 

Yearly heart checkup.

I know it’s been a terribly long time since I’ve done a proper post! I’ve got a few updates. My mom and I recently made the annual 9 hour trip to Vancouver for my cardio checkup. This year we went to St. Paul’s Hospital to meet my new “adult” cardiologist.

The bus ride was pretty painful. We take the health bus (it’s only 40$ each way which is a huge financial help). Though it may be a health bus but it’s terribly uncomfortable. My tailbone dislocated towards the end of the trip so by the time we got there I was about at my limit and super happy it was over.

Appointment day was pretty rough too. We started at 8:30 in the morning with my echocardiogram which is always a bit painful because of my rib problems. Next was my chest x-ray at 10 and my chest CT at 10:30 (so much radiation!!). We ended up waiting for over two hours for that and missed my ECG appointment altogether (they said not to leave for it because the CT was more important). They finally got my IV in for the contrast dye and I thought we were ready to go but then we had to wait some more.

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Finally we just had to tell them I was supposed to meet my cardiologist in a few minutes so we had to get the CT done. We met with a nurse who asked us some questions and then we met with a resident doctor who asked a few more and listened to my heart. Then we finally met my cardiologist. The news was wonderful; my aorta hasn’t grown anymore since last year! She also said it would be okay for me to stop taking my beta blockers which I must say made me quite happy! We only spoke to the doc for a few minutes in total. Generally she seemed likable but I still have such a hard time trusting doctors after all of the times they’ve failed me.

I requested all of the records of the appointment – it’s been recommended that I start doing that at every appointment from now on. So that if need be I can send them to an EDS-MFS knowledgeable specialist or take them with me in an ER situation. In the end we didn’t get back to the hotel room until 3:30 pm. It was a hectic day of running around and being poked and prodded.

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I enjoy our little stays in the big city (once I get over my home sickness, which I’m really bad for the first bit). I like the isolation of being disconnected from our usual boring lives and not having a computer or all of my possessions. It’s kind of like a little break from reality (aside from the medical appointments). We don’t generally do much when we’re there because neither of us ever feel too good. Shopping and sightseeing is no fun when you’re body is screaming at you so apart from walking to the grocery store for the necessities we don’t go out a whole lot. We’ve been going there for appointments since I was four so it’s kind of like a second home and it’s not too exciting anymore.

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This is my little workshop setup in our Easter Seal room. I spent most of my free time in Van sitting here drawing. How adventurous am I?!

All of that aside there’s a little art store call ArtRyan next to the grocery store. I have to go there when we’re in the city, it’s my kryptonite. We don’t have an art store where I live so it’s like heaven. It’s the only place I can get good, reasonably priced supplies. And it’s a small locally owned business. The owner is a very kind man who himself is an artist with a studio in back. He gives me good tips and advice on the things I’m looking for and he really knows his stuff. It’s nice when you do spend money knowing it’s supporting someone like that.

The bus ride home was particularly rough. It’s been a week and I’m still sore from it. But hey, I’m back home now with good news, a nasty IV bruise and some awesome, much needed art supplies. Apart from that it’s like we never left!

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An update of sorts.

First of all, I want to extend my thoughts and prayers to everyone and anyone affected by the theater shooting that occurred last night. I am so sickened and saddened that this happened. I can’t even fathom what the victims and their families were and are going through, but from the depths of my heart and soul; I wish them well. It feels like a sad day to be human, when reminded that our species is capable of such senseless horror and cruelty. May those who were injured make speedy recoveries with as little added suffering as possible and those who were lost find peace.

Now, I realize that I haven’t been blogging about any medical related things in these last few posts. Mostly because nothing too interesting has been happening.

My shoulder did dislocate for the first time the other day. Well, actually, my guess would be that it was more of a subluxation than a full dislocation, but painful none the less. And disheartening. Another reminder that my tissue is weakening and that things will and are only going to get worse with time. To make things even more pleasant, a couple of my ribs decided to also subluxate today. They popped back into place fairly quickly but as you can imagine, the surrounding tissue and what not are going to take a while to heal. Sadly, I’m becoming very used to this. It seems like every time I finally heal from the last subluxation another one occurs. I kept my arm in a sling for the first little while after the shoulder incident but it seems unnecessary now, it doesn’t seem to be helping as much.

I recently ordered an orthopedic corset off of the internet for the purpose of compressing my ribs and hopefully keeping the lower ones in place. I got the idea because when my ribs are moving around it always helps to hold my arm down against them. The sizing got messed up on the first order so I’m just waiting to get this one and try it out before I give my review on it. I’m really hoping that it does something.

In other events, I’ve been avoiding my doctor like the plague. Not for any specific reason really, only that I’m just tired of doctors. And I’m also still contemplating what to do about my beta blocker situation and I need to decide on something before going in. I finally made an appointment for next Friday so I really need to make a decision.

Now I’m going to be super cliche and talk about the weather. Mostly only because we’ve had more thunderstorms in the last couple weeks than I can remember having throughout my entire childhood. Which is awesome because I love lightning. Watching it at least. I love the rain too.

This picture was taken in my hometown where there’s been some flooding. Where the geese are is actually a road. It floods like this once a year, and every once in a while someone is silly enough to attempt to drive through it.

100 Day Long Week

I clearly haven’t posted in a while. I have a decent excuse, I swear. The past week or so I’ve been sleeping (or attempting to) for about 20 hours a day. Some kind of a bug or something I think. It’s starting to slowly ease off now but I still feel exhausted all day long. The fatigue is accompanied by some very intense headaches (to add to my usual ones) and the feeling that my entire body, from head to toe is bruised. The lymph nodes in my neck on the right side are swollen but that’s nothing new. Actually, to be completely honest it feels like waking up with the worst hangover ever. Gravity feels a thousand times stronger than usual, my pillow feels like a magnet and my head the metal.

I had some blood work taken on Thursday to make sure it was nothing serious since my parents were going out of town for the weekend and I’d be home by myself. I got a call on Monday that my doctor wanted to see me, “nothing urgent” so I have an appointment for next Monday. It’s got me curious as to what she wants to see me about, maybe the blood test showed my iron’s low again or something like that. To be honest I’m hoping it is because then I’d know why I always feel so ill (not just the past week’s kind of ill).

My eye doctor gave me a stronger Pilocarpine drop to see if that would keep my pupil small for longer. This drop is 4% instead of 2%. I didn’t even know there was a stronger one until he prescribed it. I haven’t tried it yet, I’ve been waiting until my head hurts a little less, I don’t want to add the eye ache to it. I have an appointment with a connective tissue specialist next Wednesday. Through him we’ll see about booking an MRI of my spine. It’s been about 5 years since my last one.

A few weeks ago I sat down with my town’s local newspaper and did an interview about what my life’s been like since I was diagnosed and how critical raising awareness about these disorders is. The article was recently published and I’m really proud of how it turned out. I’m not sure where my copy of it is hiding right now but when I find it I’ll post some of it on here.

Post NMF Conference

I am back from Portland. As promised I will be posting many of the gazillions of pictures that I took and will be divulging all of the heaps of helpful information that I got while gone. And when I say “will be” I mean tomorrow. I just spent two days getting back here and plan on sleeping for a good hundred years (I added that up and ended up coming to the conclusion that when I wake back up it’ll be 24 hours later…) starting in an hour or so. Anyways, just thought I’d let you know that you hadn’t been forgotten. For now, I will say that I have never been so happy in my life and that the people I met and the things that I was able to experience were amazing in every sense of the word. I will never forget this weekend and wouldn’t trade it for anything. I’m excited to get to share some of it with you through my blog.