Jerome and Perry, the tale of a Port-a-cath and a J-tube.

It has been two weeks since Perry got put in and Jerome changed out. I'm just starting to get my energy back and finding my groove with two new men in my life. By men, I mean tubes with boys names. The first week was a write off in terms of me being physically able to do anything. It's not like getting Perry put in was some big surgery or anything, but because of the way my body works it knocked me out. When I was talking with the surgeon beforehand, I made sure he knew that I wanted Perry put up high on my chest. The reason for it is because I didn't want the tube going into my jugular vein to be pulled, and finding comfortable clothes would be easier. When they were doing the procedure, I reminded the team of it again. Sedatives don't really do much for me. So as it stands, Perry is on my boob and the tube going into my jugular vein is always pulled and tight. Wearing push-up bras, v-neck or scooped neck shirts kind of help things. It doesn't help that I use my pectoral muscles for everything that my shoulders should be doing. Having Perry placed where he is, has been taking a lot of getting used to. I'm getting a lot better at not hitting my boob and I had to learn to hug again. The first time I hugged someone with Perry accessed, it hurt like a mofo. The incisions are healing well and the bruising is almost gone. I love the fact that it only takes 1 attempt to get him accessed and it doesn't really hurt. It's so much better than multiple attempts at digging around and blowing out veins. I'm getting 2L of fluids over 3hrs everyday. I refused a pump and have the freedom to be hooked up in my room, the living room and the front porch. The funny thing is I'm taking better care of myself at home than I was getting in the hospital. I'm so thankful that I can do things my way.


Jerome, he's healing well with some funky scaring and I've had no problems with him. Except that I still really hate the type of tube that he his. I cut those white pointy bits off the tube and have found that my skin prefers to hold Jerome in place with Tegaderm rather than paper-tape, and the red plastic attachment is sharp and scratchy. I just really dislike the fact that it's uncomfortable and I can't un-hook this tube and forget about it like I could with the mic-key button. There are bonuses with this tube, one is that I don't need the expensive extension tube for the mic-key button, which does not come with a cap or lid, so I had been putting it in a Ziplock bag. Secondly, I can lay on my stomach comfortably which I couldn't do with the mic-key. However, now that I have Perry I can't really lay on my stomach. Bleh.

Overall, I'm feeling okay if I have my fluids and pretty much everyone who sees me says I'm looking better. I still have dysautonomia spikes but they're less frequent and not as intense. GI wise, if I'm not really using my Jerome or eating I'm okay. I still have the awesome puking abilities. Lentils and quinoa that I had eaten 12 hours prior didn't want to stay down, I even get lentils stuck in my nose as part of the side show. Aren't you glad I told you? I'm refluxing pretty much everything except that plain chips, rice noodles, mangoes and coconut juice are relatively okay. I still eat other things because I need the nutrients, I love food and if I'm going to barf, it's going to be worth it.

I'm still working out a routine and efficient way to work in Perry and everything that comes along with it. After a week of fighting with home-care I finally have a care-plan that works for me. The one they gave me had to be refused and worked out a couple of times. It was well worth it. Living with EDS means a lot of loss and a lot of compromise. One thing I will not compromise is my quality of life.

I still get headaches and migraines everyday but with the fluids, being in low light or darkness, quiet and laying down are helping. I've got the brightness on my laptop turned all the way down which helps a bit, but after a while it gets too bright,things get blurry and I see double. I can get about 3-4 hrs of being upright and out & about before I'm toast.

Meds have been pretty straight forward. I'm barfing a little less with Oxycodone and it's helping with pain reduction by about 50%. I chickened out again on doing a Propranolol trial, the weekend prior was just to nice outside to be wasted on experiencing side-effects, and this past weekend I was feeling gross so I didn't want to punish myself anymore. Since I'm using Perry everyday it means I need to have it flushed with Heparin everyday. We decreased the dosage a bit because I'm a bit of a bleeder to start with and also because of the frequency that I'm using it. That's all going well, I've noticed that little cuts bleed more, and my mouth gets cut and blisters a little more easily than before but nothing crazy.

I've got some pretty insane cabin fever at times, but manage to get Jack-Jack out for an hour's walk everyday. I can finally didgeridoo again which makes me so happy, I was going a little crazy for a while. Otherwise things are getting better as I'm adjusting and wrapping my head around having two tubes. I'm starting to trust more, letting friends help and not worrying about being uppity and energetic when I'm drained. The things I'm having the hardest time with is not being able to work or being active. Those two things were my life, which means I still have a lot of work to do and need to keep trying to find new outlets and passions. When I'm laying around at home during the day I feel lazy, like I should be working and that I need to always be doing something productive. When I start my day with pain-killers or anytime I take them, I feel like someone who needs to be on Intervention. I dislike how I feel when I'm taking them, and wish so much that I didn't need them. Then I realize after not taking the meds that I am always in pain, I am chronically sick and I can't work right now. I guess I'm paranoid that people see me as someone who's taking advantage of the system and getting a free ride. It's not like having one of those "sick days" where some people skip out on work for the day. I would love to be able to work again.

Since most of our bendy posse sees a lot of the same doctors, we often are in the neighbourhood at the same time so we like to try and meet for a bite to eat. Toronto has some excellent food options for any GI or TMJ friendly diet.
Last week a bunch of us met for brunch (which we found out isn't the best idea for some of us) and later on in the week we met for Thai, and had lunch with the most delightful, almost 11yr old zebra. Right now everyone in our bendy posse seems to be holding their own, which is so nice after the insane summer we all had. A bunch of us have big surgeries coming up and I think we're all enjoying the stability and taking it easy. And just for fun, I'm going to leave you with quotes from our bendy sista' Tiffany who had her tonsils finally taken out after 3yrs of doctor fighting. I love that girl.

"I'm a bit cheeky, so I'm wearing a Dr. Pepper shirt that reads, 'Trust me, I'm a doctor' to my surgery ;-P"

"I am working on my relationship with my couch. It's important to spend quality time together."

"Rosanne is getting her own reality show. You know who would make an awesome reality show? Celine Dion. You know you would watch. You'd be ashamed and wouldn't tell anyone, but you'd watch for sure"

"I like my murse... He's taking good care of me." (In reference to her husband)

The pain in my......

Who knew an e-mail that was to be sent to my holistic medicine peeps, would turn into a blog post...It's time for another edition of copy+paste.

So I have absolutely no intention of coming off as a drama queen, or a whinger. I've been in an insane amount of pain since the hospital (it started when I went off the supplements), and haven't really slept since. It's hard sleep when you feel like the things they use to resurface a road is rolling over you. Over the last 3.5 days of living from the hammock, couch ,bed or tub I've come to a little revelation.If I could only take my own advise...

With all of regression I've had over the years, especially with the last two being really grueling, I'm thinking it's time to start looking at using pain killers in addition to our arson of super-powers. My stay at Chateau Sinai gave me a pharmaceutical that works and doesn't make me sick like all the others. It's Percocet...It takes the edge off (I only took 1/2 dose) and I can either crush it up and put it through Jerome or chew it.

I've had a bottle of it sitting around for a couple of years and have been terrified to take it. Fear was the biggest reason why I've done dental surgery and two J-tube surgeries without any pain-killers post-op. I guess the good thing about it, is now I'm not afraid of pain, and I can handle intense/localized pain with breathing and being still. It really comes in handy when anesthetics don't work or are dangerous. At the hospital I had a lot of time to think and process, and I've realized that this shit isn't getting any better and symptomatically I'm having a lot more bad days. Pain flares that were once uncomfortable joints and muscles that lasted a couple days at most, have turned into days spent laying on the floor puking at it's worst. As my joints have become more bendable and my tissues doing their own thing, holding my body together is exhausting and painful on a good day. There are days when I can almost function like a normal human, but they don't happen often. Absolutely every movement I make results in a painful consequence, requiring me to spend unnecessary energy evaluating, organizing and using purposeful movement to make it through the day.

Dysautonomia makes everything so much harder to deal with, because of my inability to always regulate sensory input and react to it normally. Some of the tricks that helped with pain no longer work, or are contraindicated. Hot baths are the best thing in the world, but dysautonomia doesn't like it, and having temperature regulation issues, tachycardia, blood-pressure drops and black outs aren't exactly safe. Or fun. Because of my insanely high pain-tolerance I don't really get much relief from my TENS machine anymore, things like ice and heat help but they're short-lasting and I burn or freeze my skin. Adaptive goodness helps, but an exoskeleton can only do so much and after a while braces do get painful. Treatments are my favourite thing,they're really effective and have saved my life. However, sometimes they're short lasting and at most take the edge off (on those laying on the floor puking days).

I think I spend so much energy on slapping a smile on my face,moving forward and finding possibility that I forget, or rather choose not to look back. That means I can't always gauge my symptoms over long periods of time. So many crazy things are happening all the time, I forget so much of it. During consults and follow-ups when actually I listen to what I'm saying, I realize that none of it is anywhere close to normal and it's not any way to live. Because I'm always in pain (except for when I'm floating in a warm pool) it's just part of life. What I forget, is that pain and exhaustion are not a normal parts of life, never mind the days spent in agony. There isn't much left on the "can do" list, and pain essentially makes me give up being able to really live. I don't ever expect to be able to paddle, climb, play soccer, work, taiko drum or have a real girls night out again; but I would like to maybe get back some of the things that aren't so out of reach. Things like being able to propel myself in a wheelchair, walk around for a few hours, more upright and unsupported sitting ,cooking and baking from scratch, writing more than a few sentences and just going out with my friends.

One of my bendy friends compared having EDS to being tortured everyday for your entire life. She's pretty accurate...I haven't really started on the osteoarthritis thing yet or all the craino stuff, and I know I have a lot to look forward to. I'm so fortunate and lucky to be only affected the way I am, when some of my bendy friends are running out of pain-killer coctails, getting spinal-cord stimulators implanted and even thinking of amputation. All because of pain.

I think it's time to swallow my pride, take my own damn advise and do what I have to. Start with the Percocet so I can live my best life.

As for the hospital stuff I'm getting a referral to a surgeon who does the fundo at Toronto General or Western I think...I don't know, I'm at them all for one thing or another. And I'm also getting a referral to a new GI specialist who I've been told is fantastic. I'm pretty sure I want to go with the surgeon on Hamilton though because he's bad-ass at fundo's and takes EDSers. That means he's educated in it and can keep me pretty safe. I'm hoping I won't need to advocate and be on top of things as much. This last stay there were 3 dangerous mistakes that could have been avoided if they took things more seriously and paid attention. 1) I wasn't getting enough fluids for until I raised all hell 2) They wanted to give me blood thinners (because they give them to everybody to prevent clotting), I'm a bleeder, spend just as much time in bed and am ambulatory. It was offered everyday. 3) Gave me test results that were from when I was inpatient in January and wanted to start a treatment plan from it.

I do NOT give the hospitals consent to:
1) Give me medication without informing me what it is, and asking if I want it.
2) Put anything up my ass.

Jerome is back to normal and taking the 300mls/hr and feeds with a little refluxing, but not the craziness it was before. Dysautonomia has calmed down as well.

I think what happened was the medications didn't do anything for symptoms and I reacted to them which made the dysautonomia even more crazy. Sound logical?
And now I just re-opened the wound, woot! At least this didn't happen in the hospital...

A bendy friend Barbra passed away this week. Our Toronto bendy posse friend Michele is fightin' like it's nobody's business, her intestine ruptured and most of it had to be removed. During surgery her spleen got knicked and bled out, so it had to go as well. The EDS and Dysautonomia community has been slammed in the last month, so in the words of my bendy friend Tiffany:

"Dear: EDS, FUCK YOU! YOU FUCKER!!"

When OT's do the impossible, the good kind.

In between the gong-show that has been life with EDS, there have been some pretty incredible victories of sorts.

After making all the adaptive goodness for my hands, my OT wanted to know what else we could come up with. The one thing that is almost impossible for an EDSer to get is a neck-brace that fits properly, and doesn't make for more TMJ issues. So, we went for it.

I realize that I walk the line of being out of mostly everyone's scope of practice. I'm their first patient with EDS, and when you present someone with a disorder that is complicated and wildly unpredictable it's a huge challenge. Instead of us who were diagnosed and have had time to research and experience it, our doctors, specialists and everyone else gets the EDS bomb-shell dropped on their laps. Aren't they lucky?

We had to take a good look at the how's and why's of using a brace instead of surgery right now, and all of the factors that would need to be taken into consideration.

After a few attempts and many adjustments we figured it out. We still have a little bit of tweaking to do, but my new neck is incredible. It wasn't much help that I haven't been feeling the greatest with the dysautonomia, so I had some major brain-fog and a killer headache. I've been pretty hypo-sensitive with some kinds of pain lately, which has resulted in a lack of hunger and some burns. I hadn't eaten in about 20 hours, which only contributed to the problem. Luckily, with my fluids concoction the blood-pressure drops,tachycardia and obviously hydration have been okay. My ability to give feedback and carry a fluid conversation without going off into la-la land was a bit hampered. It's better than the times when I can't even finish a thought.

If it weren't for the brilliance of the OT's, a neck brace that fit ME wouldn't have been possible. The fact that my head can be supported without some major TMJ pain is incredible. EDSer's have to choose if we want to keep a killer headache/migraine or put up with TMJ pain/headache. Either way, there's still pain. Going without a brace and laying in bed is quite often what we end up doing. Today,we found a way around all of that. Today, my quality of life improved and I have one less big problem to worry about. I can use that energy towards something else that will push me further in the direction I want to go, so I can contribute to the world.

I think since it's such a huge piece of adaptive goodness, it needs some kind of a name. I don't want it to be totally off the wall (as if Jerome isn't...) but something that's easy to remember. Any suggestions are welcomed.

Without further adieu, here is my most brilliant piece of adaptive goodness that is currently nameless. Don't worry I'll also be finding a way to bling it up too!


It doesn't mess with my jaw, supports my head and neck, and is COMFORTABLE. I can also eat with it on.

I will take arm-pit rash any-day over more killer headache/TMJ pain.


Yep, there's a little pillow at the back. It was the only way we could get it to fit without restricting my airway and still be comfortable. The little pillow is fastened on with Velcro and is just batting with a sleeve. The other pro is that I can take out the pillow and throw an ice-pack in there when needed.



This is what happens when it's a beautiful sunny day, and studying isn't all that exciting.

Sunshine and flowers make any day better.


My poor OT is probably going to be harassed from bendy's looking for some adaptive head/neck goodness. There will be line-ups outside her door. That's what happens when you do the impossible.

When the world says "Give up", hope whispers "Try it one more time".

EDS + unnecessary night at the hospital ='s hell.

Well, I have to say this has probably been one of the longest nights of my life. Yesterday, I was suppose to be admitted around 12:00 to hang out until this afternoon until my surgery. Why? Who knows, I'm still trying to figure that one out. My friend and I got to the hospital on time and were told that there wasn't a bed ready yet. They told us it would be a couple hours, luckily my friend lives down the street so we ended up going to hers. Two more hours passed and they still didn't have a bed. We said screw it, and decided to go out and enjoy the beautiful warm sunny weather and ended up hanging out in Chinatown while we waited. I'd take that any day over sitting for hours in a waiting room. We both ended up with fun accessories before there was a bed ready. I got admitted and everything in place.They did some blood work and got a line started, then the resident came to check things out and find out more about me. She was fabulous, much better than the GI specialist who isn't too keen on listening to me and asking my opinion of things. I was able to eat the food I brought and just made myself comfortable for the night.

That's when it all went down hill. I wasn't allowed to take my supplements because they don't know enough about them to know if there will be drug interactions or anything else. Wonderful. That left me screwed. The stuff I take helps with pain, insomnia, anxiety, muscle cramps and just about everything else. Hospital pillows suck. They're thin, covered in plastic and filled with air. Not what someone with EDS needs. There were a million nurses in and out of the room (which is no problem, they're doing their job) but when sleep helps with pain control and you're not getting it, life isn't fun. Luckily, my night nurse kicked ass and managed to get me some Advil, ice packs, more pillows, fluids and did whatever she could to make things more comfortable. She also took the time to understand EDS in all of it's glory.

I ended up having a meltdown at one point. I was so tired, sore and frustrated that I was stuck in a place that was suppose to be taking care of me, but it was the complete opposite. If I were home, I would have been comfortable, in far less pain and probably would have slept pretty well. I'm essentially running on a nap, so the anesthesia is lookin' pretty good right now.

The tube is suppose to go in this afternoon. I'm not on any food or liquid restrictions, WTF? I haven't had anything to eat or drink since midnight last night and plan to keep it that way. I think someone forgot to write a few things down. How is it that I'm restricted for a gastroscophy but not a gj-tube placement?

The need to self-advocate never ends, but I'm okay with it if it means better care.

I ended up back in the ER the other day for dysautonomia, I managed to make it a month between visits so kind of proud...much better than the 3 times in 2 weeks last month. After the first time, I e-mailed the patient relations department with a link to my blog about how awesome the ER team was. Last week they let me know they sent the link to the ER department, which was pretty cool. The doctor who treated me this time, recognized me from my blog. Yep, he read it and I got to tell him what I needed, not the other way around...Epic Win!

"So you have Elhers....I don't know how to say it Syndrome and Dys-what?"
(Pretty much everyone who's taking care of me here)

Coming down from the conference "high"

It's Thursday. I've been back from the EDNF conference, and my bendy friend's house for 4 days. I think I can officially say that it's back to stupid reality. Not everything is horrible, but I'm really missing what used to be.

One of my bendy friends on facebook asked the question: " If you could do/be/have anything you wanted, what would it be ? ". My answer involved things that I either once had, or was aiming towards. I'm not saying that I don't have any new goals, or things I'd love and can still do, but I miss my body the way it used to be. Summer isn't the same, I feel so confined in a body that does nothing but fall apart. I most definitely have nothing against relaxing in a park with a friend and having an ice cream cone, but there are things that still call my name and there's nothing I can do about it. One of my first thoughts after I woke up this morning, is that I still have money on my card at the paddle centre that isn't being used. I know I can't paddle anymore and it's just going to sit there, so I'm going to have to call and see if they can reimburse me for what's left on the card. Yeah, that conversation is going to be a blast. "Hi, I'm wondering if I can get my money back, I'm turning to mush and can't paddle anymore...Yes, I've tried and ended up dislocating like every joint in my body....No, it's not something that gets better." Going out to play soccer with a bunch of friends, that's not happening anymore either. Same goes for the climbing gym, anything that involves endurance (walking around fits in that category) or even eating without constantly choking. Thanks EDS.

When I was at the conference, I was normal. I didn't feel the need to justify everything I did, and nobody stared at me. Here, it's a whole different story. I could easily loose count of the number of people who feel the need to stare at me on the subway, or anywhere else for that matter. I'm not overly self-conscious, but seriously who raised them!! I can understand the whole curiosity thing, but you can be curious without making others uncomfortable. Especially, the subject of your curiosity. This is just me walking with my leg turned in, looking like I'm drunk with braces on my ankles. Things could get interesting when I finally have my AFO's and a wheelchair. Throw in the occasional neck brace and whatever else I'm using and I could have my own show.

I still feel like there are only a few friends who truly understand the complexities of EDS. For that, I get questioned as to what my body is doing, weather or not it merits all the braces, treatments and the wheels. Best of all, if it's just in my head, and I should work on my attitude. Granted, there are only a few who have seen me at my best (insert sarcasm here), but I have been more than honest in letting people know that I spend a lot of time in bed, and recovering for 2-3 days from doing something I used to do with no problem.

Nobody really sees me when my suspected dysautonomia is acting up, when I'm puking because my body can't process pain, when it's 4am and I'd love to do nothing more than sleep but I can't because I feel like I'm going to jump out of my skin. They don't see me tossing and turning in bed for hours trying to get comfortable without dislocating something. They don't see the effing agony of intense pain that won't go away, that has rendered me useless to myself and anyone else. They don't get what it's like to be at appointments 2-5 times each week just to be able to function independently. Most of all, they don't understand what it's like to go to sleep in agony, and wake up hoping to feel a little better but wake feeling worse knowing there's an entire day ahead.

I really try hard to maintain a positive attitude, and keep looking forward. Since returning from the conference I have been nothing but exhausted in every possible way from EDS. I'm essentially sick and tired or being bendy and tired. I'm sick of the isolation, questions, pain, unpredictability, constantly having to adapt everything and the relentless reminders that everything is getting worse as each day passes. Haha, this sounds so bitter...I promise, I'm not.

It's pretty obvious that at this moment in time, I'm not the world's happiest person. These are the days that I MAKE myself find the positive and happy times during my day before I crash at night. Here's my list of happy things for today: Got to decorate my living room with streamers and balloons, it was sunny outside, I wore one of my favourite skirts, I got to draw on the windows at work, I met some new people, I got to blow bubbles that smelled like strawberries, and lastly, it's Friday!!!!

"When I step into the light, my arms are open wide. When I step into the light, my eyes search wildly. Would you not like to be, sitting on top of the world with your legs hanging free. Would you not like to be, ok,ok,ok."

(Dave Matthews Band)

EDS Hang-overs

We'll see how long I can write before this post stops making sense. I've been feeling gross, and the melatonin (my best friend) is kicking in.

This weekend I over-did it. Still learning to take it easy and not really liking it.
Saturday morning I got up to go for a paddle. This came with much excitement and anxiety. I wasn't sure if it was still on the "can do" list. Shortly after getting on the water (like five minutes) I realized that it was no longer on the list of things I can still do. I was hoping I'd get one more summer out of a canoe and go out with a bang like I did last year with kayaking. From the get-go, I could feel the tendons pulling in my arms and wrists. My hands weren't happy with the paddle, they got cramped and my fingers started subluxing. Shoulders started to dislocate and then my hip followed suit. It was really frustrating knowing that I used to easily be able to spend the entire day on the water, in different conditions and now I can't last 20 minutes on flat water. One more thing I have to let go..ugh! The one positive thing that came out of it, is that I can still have some of the most excellent naps in a canoe. There is nothing more relaxing.....nothing.

Sunday, I met with a bendy friend and 4 other friends for the Pride Parade. What could be better than celebrating peace, acceptance and love ? We started with chilling out in a park then migrated to a sushi restaurant. My bendy friend and I both have TMJ issues, and I've got the awesomeness that is dysphagia. I couldn't eat any of the seaweed, and a bunch of other things on the menu. There was also a lot of choking involved. yay. Eating took a lot of effort and energy from both of us, we were tired just from eating. We then walked around for a while finding a good place to stand for the parade. With over 1 million people, sitting wasn't really an option unless you had some wheels. Not to mention, that it was HOT out. The parade was fabulous, in addition to my bendy friend and I being so excited that we lasted as long as we did. Sadly, it wasn't long enough and we had to go find somewhere to sit. After the parade we all went to another park to relax in the shade and cool down. By then, my body had enough. I had a massive headache, everything was dislocating and hurting. Walking was hard, I looked really drunk...Sadly there was no alcohol involved. After a while, we got up and walked around some more. By then my bendy friend hit her threshold and needed to go home. Ten minutes later I was in the same boat.
I stumbled home (literally) feeling like I had been hit by a truck. By then, my headache was killer, and everything hurt more. That's when the puking started. When I over-do it, I don't always realize it because of my insanely high pain tolerance. Instead of feeling pain, I puke... that lasted about 8hrs. 30 hours later, I'm still feeling gross. I've done everything possible to help but I think it's something that I need to just ride out.

I'm getting my wheels sometime this week. I'm not excited that I need it and can't even walk around for the afternoon anymore. I will say looking forward to surviving a night out with the girls, and just participating in life without the EDS hangover.

My bendy friend is also going to the EDNF conference, we're really looking forward to it. Just imagine, a whole bunch of people just like you where you're "normal"...Can't wait, T-8 days!!

" I bet if we drink enough we would start walking like we're sober"
(From a conversation I had with a fellow bendy)

Empowerment, just learning and growning.

"Don't regret, just learn and grow."
Those are words that I try to live by, I find then empowering. I've had to start wheel-chair shopping and I can't say it's been much fun. I know that by using some wheels for places where I would be out walking a lot, it would save me a lot of energy, and would reduce injuries. It would also help with big injuries, and days when I'd be feeling like chewed gum.

I think we all wonder what our bodies would be like if we hadn't done this, that or the other thing. Would we have saved ourselves from more injuries, surgeries and pain?
Do you know what? No one knows.

Since I'm a big fan of trying to see everything as a choice, here's how I look at it. Living with EDS makes us question everything, we constantly plan ahead and constantly adapt those plans. That's just the way it is. Even with that said, we still have a choice. We may try to compare risks and benefits, and probably often think about what kind of injuries we could acquire. In the end, we still always make a choice.

I choose not to always go out with the girls, or do something that requires a lot of walking around. It always results in needing to take the weekend to recover (even if there isn't alcohol involved) and I feel like I missed out on life when I'm stuck in bed. I do choose to ride my bike, it's something that makes me very happy, it's healthy and it's freedom. Those are things that empower me. I haven't gotten any injuries from it *knock on wood* and feel great afterwords.

I choose not to eat food that makes me feel sick (most of the time). I choose to participate in activities and work that will probably result in an injury. Why?
To put it this way, I don't want to look back on life and regret not taking advantage of those opportunities. What if we took them on and stayed fine? What if we didn't take them and ended up in worse shape? We just don't know, and there's no way to know. Well, unless it's something like skydiving without a parachute.

I had to give up kayaking last summer and this summer will probably be the last summer of canoeing. I've been paddling with dislocating shoulders for the last 7 years. Was it a good idea ? Sure it was! I've had an innumerable amount of priceless experiences, none of which I would trade for a million dollars. Who else can say they've taken a canoe on the subway, paddled down the river just off the subway station, into white-water and then to calm water on the lake while watching an air-show over-head ? There's also nothing else like throwing your camping gear in a canoe and paddling into the middle of no-where, just you, your friends and nature. I've never had any big injuries from paddling, no more than sore tight muscles and the odd dislocation. That was until last summer, but still no regrets.

Do I regret going to the climbing gym even though it was probably one of the worst things for me? Not one bit. I saw it as an opportunity to test limits, and see how far I could push myself.
I also know that I need to call it quits for myself, when I feel like it's time. I always know that I tried as hard as I could to keep going, and had a blast doing it. When it hurts too much and stops being fun, then I walk away.

When I started with Taiko, a lot of people thought it wasn't a good idea. They thought I would hurt myself even more, and that I would be setting myself up for disappointment. I've had to adapt a few things, and will need to keep changing things up to make it work for me. I have loved every second of Taiko and will keep playing until I can't do it anymore just like everything else.

Here's something else to chew on...I think a lot of the time, one of the big things we consider when making a decision is how disappointed we could be. We get hung up on a negative that doesn't yet exist. When something "bad" happens we say "I knew this wasn't a good idea", "I shouldn't have done this", "What was I thinking?". When these things happen, how often do we think "I will definitely learn from this", "Next time, I will try to do (blank) instead" or do we just laugh at it knowing we will find it funny later on. Probably not too often. I used to think that it wasn't about setting myself up for disappointment, but that I would expect something "bad" to happen and thus be "prepared". Not the world's most brilliant idea for this girl. Very slowly I learned that yes, there was a chance that things wouldn't work out the way I wanted, and that the experience might not be a pleasant one. But I know that I always learn from it, and take away something new each time. Who am I kidding, that's how life goes. We can plan all we want and it will never work out that way. Those unplanned, unwanted experiences are the ones that make us grow and become wise beyond our years. I think we need to be like kids again, and get excited more often. Children don't make decisions with anticipation of something bad happening. They still see the possibility in everything and get excited about what could happen. They live in the moment and have the creativity to adapt and make something "bad" into something fun.

With all of that said, even though I'm getting a set of wheels and can't do nearly half of what I could do last year, I don't regret anything. If I go to bed with an injury, I still know that I tried and found out for myself that it might not have been a great idea. I didn't go to bed wondering if I could have done something and missed out. I don't regret, I just learn and grow.

" Be curious always! For knowledge will not acquire you; you must acquire it."

(Sudie Back)

Baby Steps

I'm slowly being able to get back to life and am very happy to say that the killer headaches/migraines are now gone. My neck is still a bit crunchy and needs to be supported throughout the day, but it's nothing close to what it was a week ago. I went back to taiko the other night and it was fabulous! I was really sore after-wards but it was well worth it. I'm no longer spending ridiculous amounts of time sleeping, but am back to having insomnia again. Although sleep deprivation is no fun, I come up with my most brilliant ideas and blog posts between the hours of 2-5am. That's got to count for something right?

I just started a new homeopathic remedy to hopefully help control pain, how nice would it be if it worked?

I'm on my way to getting back to school, the mountain of paperwork seems to be getting bigger, but I'm making little dents in it here and there. My funding application for my AFO's is being reviewed, crossing my fingers they approve it. I need them ASAP, my ankles are getting worse as each day goes on. Speaking of ankles, I did another modification to my ankle braces. For a while, I was taping ankles and super-gluing stick-mat to the tape for taiko, so I could have some traction. During my two weeks in bed, I had another brilliant idea and decided to give it a try. It involves Velcro, Gorilla-glue and a cut-up yoga mat. Now, I have soft, durable and removable traction whenever I need it. I still refuse to wear shoes with my braces in the summer, it's too hot. I'm hoping I might be able to do the same thing with the AFO's when I finally get them.

Other than that, not much else has changed. I'm still sick and tired of being bendy and tired. EDS is exhausting in every possible way. Ugh! I know a lot of us in the bendy world are having a really, hard time with all that EDS has to offer right now. When your entire body doesn't work properly, just trying to make it through the day can feel like an overwhelming and daunting task. Staying in bed is often appealing, but it won't get us anywhere and EDS will never go away. I came across this video and think we should all do the same thing. Especially, the little happy dance. http://www.youtube.com/watch?v=qR3rK0kZFkg

That's it from this end for now, sending positive thoughts with sunshine and lollipops out to the universe.

Life is not a journey to the grave with the intention of arriving safely in a pretty well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming "Wow! what a ride."
(unk own)

Sometimes I wonder…

Sometimes, I wonder how much people actually believe what I'm saying. I know having all these awesome symptoms and injuries sound really far-fetched.

Take last week for example, it just got crazier as each day went on. It started with one of my ankle braces coming apart. I walk with my right leg turned in, to avoid subluxing my hip. Doing that puts more pressure on my ankle, which is what I think was a big factor in my brace falling apart. Anyway, I thought I had the brace temporarily fixed with some super-glue, and the pain in my ankle would subside. I was wrong. Then, I decided that maybe taping my ankle like I used to do before the braces would help with stability. Wrong again. It didn't do anything, and I ended up with a lovely rash from the tape. Apparently your skin doesn't forget those things. I knew I had to do something, because it was getting increasingly painful. Just a quick note: I have a ridiculously high pain tolerance. If something is hurting, then there is definitely something wrong. It has taken me years to learn to listen to my body.

On Thursday, I went and got some new crutches that actually fit; taking pressure off my hip and ankle to allow some time to heal made sense. I was trying to be smart about it and give my body a break. I picked up the crutches before heading to work, and thought I could continue on my day as normal. You're talking to the girl who has always found ways to make things work with subluxed hips, neck, dislocated shoulders, you name it. Boy, was I wrong. I rely on public transit (bus, subway, and street-car) to get around when I'm not on my bike.

EDS + crutches+ TTC ='s a nightmare!!!
To start, not all the subway stations are accessible. Half the time, the escalators are broken. This week they were broken. Being the genius that I am, I temporarily chose to forget that I have EDS and to just do things I like I used to. That meant, hopping up and down the stairs on one foot, with a back-pack and crutches in hand. This also meant that I didn't think about what using crutches would do to the rest of my body. Well let me show you a little mind-map.

EDS+crutches='s subluxed wrists-> dislocating shoulders-> bruised arm pits -> really tight muscles in entire upper body -> pulling almost every muscle from the waist up -> couldn't lift my arms 20 degrees w/out pain-> breathing was painful. At least my hip and ankle were feeling better...

That meant, on Friday I was in NO shape to work. Fair enough, I'd deal with it.
Later that day I went to the chiropractor so she could give me some acupuncture and put me back together. I left her office feeling a little better, and knowing that in a couple of days I would be fine. As I was getting on the subway to go home, I slipped in someone's spilled drink and subluxed my hip. I.WAS.NOT.IMPRESSED.

With all of that said, it sounds very fishy and I'm not so sure I'd believe it myself.
Quite frequently, I forget that not everyone is stuck in a body like mine, I know it sounds strange.
This, brings me to wonder what people really think about this whole thing. I often feel like no matter what I say, or do; everyone thinks I'm full of crap and am looking for attention. I wonder what people think when I am invited to do something and decline because of my body. It's never that I don't want to do something with them, but it's that sometimes it's not worth the pain. There is always a painful consequence for all of my actions. I don't ever want to be the person to just complain about things, I'm a person who does something about it. However, there is only so much one person can do. Also, with EDS there's nothing I can do about it other than just manage things as they come up. There is so much that I choose to leave out, and don't talk about. Everyone doesn't need to know that I feel like ass everyday of my life with varying degrees of pain and how exhausting it is. They also don't need to know exactly how much it affects my body, and every single one of my decisions. I think with all the people who know me, very few actually know how it affects me. I try to keep it to myself, because I focus on the positive, it's the only way for me to get through some days. Even with doing that, I know it has affected peoples perceptions of me. I've been told that I'm letting it get in my way, that I'm making a big deal out of nothing, that I was born with it and it didn't just happen to me so I should deal with it better blah,blah,blah.

I've tried to somewhat educate my peers, friends, co-workers etc. on EDS and how it affects me. I keep out the details, and have provided some info for them to read if they want. What gets me, is that even with all of this I don't know how many of them have taken the opportunity to learn. For the most part, and I'm assuming here… they think it just makes my joints dislocate and sublux. I wish it were that simple. I don't want to shove it down anyone's throats, or constantly remind them that I'm stuck with this. The very last thing I want to be is a nuisance and that's exactly how I'm feeling. Blarf! I feel like the friend that no matter what you do or say, you can't help with any of it. I don't want to have anything to do with that. All I want, is for the people who know me to spend maybe an hour, to do some reading and understand that is a reason for what I choose to do, or don't do. Like I said in my last post, the very last thing I want is pity. I just want to be understood that's all.

What I dislike most about EDS is it's exhausting in every possible way.
Physically, waking up and going to sleep with constant pain takes a lot out of you. I try to keep active because it helps distract me from the pain, I need to be moving, and it is part of what keeps me happy. I would like to be able to run on 4hrs of sleep again, but I need about 10 to not feel so gross in the morning have a productive day. I don't even want to start on how much dislocations can take out of you, it's not fun. Mentally, I need to be distracted all the time with something else so I don't think about how much my body hurts. I have to be hyper-vigilant of my body and my surroundings in order to attempt avoiding injury. I have to constantly have a plan "A", "B" and "C", because we all know that life happens and you need to be ready. Emotionally, ha-ha..I could go on for hours. I don't often think about what I can't do anymore or what I could be doing but when I do, it hits me like a ton of bricks. For the most part, I have a positive attitude about it, but some days can be really hard. Some days I just want to crawl into a hole and never come out. Those are the days that I hate the world. It doesn't happen often but when it does, I like to just shut down and have nothing to do with anyone. Apparently those are the days when I just need to "be", and do it alone. I sometimes grieve for my past, and for my future. I've had do give up a lot of really amazing opportunities that I have worked hard for. I believe that in life, whatever you are given, you have a choice on how you're doing to deal with it; which in theory is great.
It's not so great when you don't like your options, and have to find a way to make them work. I have developed a lot of trust issues with doctors and specialists that practice western medicine. I've learned that even with advocating for myself, providing literature and physical evidence that still you won't always be believed or are viewed as a difficult patient. Here's where I think things get mixed up. Maybe they forget that the diagnosis and the patient are two different things. Yes, the patient has the diagnosis, but they certainly did not choose it and are trying to make the best of it. When so much of your condition is unknown and there is little information on it, doctors can be very inpatient. I think the golden rule of treating others how you would want to be treated is often lost. It's something that is so important to a patient who has so many things against them; whose goal is sometimes to just make it through the day without having a melt-down. Since being diagnosed, which took 12 years; I have never once looked for a cure. I know it's not possible right now and don't expect anything close. I want to be listened to, nothing else. Who knows, it may make them a better doctor if they practice it.

One of the many reasons I go to a natural path, chiropractor and acupuncturist is that these are the people who listen to me. No one has to agree with me, but they listen and that is vital. They have done the reading, and are careful to take EVERYTHING into consideration, not just the symptoms. None of them have thrown their hands up in the air and given up on me; they are always willing to try something new. We all know that you can't get anywhere by giving up. I have found for myself, that taking this route has provided me with more relief from symptoms than anything else. No pill has ever been able to do any of what has been accomplished naturally, and that speaks volumes. What makes me appreciate natural medicine more than anything is that there is hope. We know that EDS is genetic and nothing can be changed about it. But, we hope that with a lot of work, paying attention to details, and trial and error living with EDS can be better. What more could one ask for?

So that's my long-drawn out rant for today, more to come later.

Tips on LIVING with EDS

Don't use crutches…nothing good comes out of them.

Keep in mind that everything is a choice, even if you don't like your options.

Don't be afraid to just "be" if you never have a bad day, then something really is wrong.

Keep trying new things until you find something that works for YOU.

There's nothing like sleeping in until lunch and having pajama days.

On a bad pain day, be sure to do at least three things you like, it helps with pain.


"If you're going through hell, keep going"
(Winston Churchill)