Sunday, April 25, 2010

In All Honesty

This is a long and honest post, I hope you’ve got a drink and some time.

In all honesty, I'm so done with EDS, I've had enough and don't want to play anymore.
I hate cold and rainy days. This is why.............

Those are generally the days when I feel both physically and emotionally exhausted.
The combination of cold and rain is always killer. It feels like my bones are being mashed together and I'm being chewed on by some big invisible jaws. It doesn't seem to matter if I get 3 hours of sleep or 11 hours, it all feels the same. There's not much that can relieve the pain other than heat, sleep and acupuncture. The clock seems to tick at a much slower pace, most likely because I'm counting down the minutes until I might be able to get some relief.
Sleep is often hard to come by, everything hurts and nothing feels remotely close to comfortable; it doesn't matter how tired I am. If I do get relief, it is often temporary but enough to allow sleep. A lot of these days are spent in bed, when I could be working and doing things I love.

For the most part, I think I deal fairly well with this whole EDS thing. On the cold and rainy days, not so much. It reminds me of how much I really hate EDS. I hate how complicated it makes everything. I'm all about keeping it simple so I can truly enjoy the other things life has to offer instead of worrying about details. With EDS nothing is simple, and nothing is ever the same, even from day to day.

Eating isn't simple anymore. I have to think about what I'm eating and weather it will make me reflux, if I am able to chew it, and finally if I can swallow it without choking. Some days are better than others. If I slept too long in a certain position then my jaw will be subluxed more than normal which will make chewing and swallowing even more difficult. If my hormones are crazy, my whole entire body becomes a loose mess and then I lack in the swallowing department because my muscles are a little more weak and everything is loose. That's at least 4 things I have to take into consideration just to eat. When I finally get to eat, I really have to concentrate on what my body is doing so I don't choke. I've got dysphagia, and have had pneumonia 3 times from choking and aspirating. Never mind about what I feel like eating. I live in Toronto, one of the best places to eat food from anywhere in the world and a lot of it is on my "restricted" list, because there will be definite consequences. Luckily Toronto is also a mecca for Nakki friendly foods.

I don't know about you, but comfort is my #1 priority when I'm not feeling well. On the cold and rainy days I will often be walking around in sweats or pj's. Oddly enough it makes me sometimes feel worse. It could be that whole "look good, feel better" phenomena; whatever it is, I still have yet to find something that is just as comfortable as pj's but looks like I could leave the house in it. For me, what I'm wearing is a pretty accurate reflection of how I'm feeling both physically and emotionally each day.

I dislike constantly going to doctors appointments. It's time consuming, I don't get income when I'm there because I'm not working, and it's always bad news. It's not like I'm looking for some kind of cure, but to maybe have something figured out would be nice. It would be a great change from the usual, not knowing what to do with me. I hate that I'm not really listened to, and that I automatically have to switch into self-advocacy mode to get anywhere. I hate that my decisions to use natural medicine aren't respected. I get told it's a bunch of crap,handed a prescription for all kinds of pills and told "good luck" because there's nothing that can be done.

I hate how everything gets worse each day with no plateau in sight. My ankle braces are shot. I've blown through them and they don't work anymore. I went to a consult to get some AFO's and it was interesting to say the least. The person assessing me had no idea what EDS was, (I don't expect anyone to know...) or where to start. I walk with my right leg turned in, as a result from countless hip subluxes and dislocations. She knew what to do with my left leg, but the right one was causing problems (very understandable) . She wanted me to come back the following week for another opinion. I think it's great that she didn't jump in head first and wanted to learn more about EDS. What is annoying, is that it has to happen in the first place. Really, why can't it be simple ? Next comes the application forms to fund these stupidly expensive braces. I have to hope that my diagnosis warrants enough merit to get the funding from people who probably have never heard of EDS. Haha that's just for my ankles, forget about the rest of my body that doesn't work.

I hate how much money I have to spend to keep symptoms at bay. I don't have a job with insurance, and most policies won't cover natural medicine. If they do, it's usually only a small percentage. Chiropractic and acupuncture treatments are expensive when you're getting one every week. Then there's the costs of seeing a psychologist and a natural path. The cost of vitamins and supplements add up, and don't get me started on food. Trying to find things that don't contain meat, wheat, dairy, corn, or preservatives isn't hard, but it's expensive. I will say that I eat like royalty, and food is a huge priority for me. When I eat what I'm suppose to, I feel so much better. It's a good thing I'm not picky and love to cook.

I love what I do for a living. Who wouldn't want to be able to play at work? I'm really having a hard time with the fact that it probably won't be lasting much longer. I know I should give up one of my jobs but I'm not ready. It's also hard to find an employer who will take someone on who needs a flexible schedule. I need to take time off for appointments, flare-up and injury days. I don't ever want to start at a job where my employer has no idea of my EDS. Also, who's going to hire someone who will have all kinds of needs that keep changing. I can't get a desk job because I'm not qualified for anything, and sitting is one of the worst things I can do for myself. I have no choice but to go back to school, which I will gladly do. I'm hoping that I will have the same passion and drive for my next career as I do now.

I hate how much EDS has affected my relationships with people. I've lost friends, because they don't agree with how I've chosen to live with it. That's pretty epic on my "things that upset me" list. There aren't many people who actually "get" it, and it just plain sucks. I feel so miss-understood and frustrated. I don't want to give up opportunities to be with my friends, but I don't have a choice when I'm not feeling well. I know that when I've had a pj day, getting out and doing something isn't going to happen. I'd love to do anything but stay in and lay around but it's not an option and it sucks. Dating, well that's become a bit complicated too. It's not like I can leave EDS out and not have it come up. I walk with my leg turned in and I wear braces on my joints....It's pretty obvious things aren't right with me.

I hate feeling powerless and just having to ride things out. I have no control over what's happening to my body and I have to deal with it as it comes up. It would probably be easier if pain flare-ups were less frequent and intense but that's not the case. I decided that I won't have my own children. I did the research and it's not a risk I'm willing to take. I don't like the idea of genetic Russian-roulette. Additionally, it has the potential to be really dangerous for baby and me. I know how my body reacts when hormones change, and it's not pretty. All hell breaks loose, and I feel like I've been hit by a truck. I don't even want to think about what being pregnant would do to my body. Even though, I chose not to have babies, it wasn't something that was easy. It's a primal instinct to want to have children, but I feel like it was also choice that I had to let go. It wouldn't be fair if I took the risks and they didn't work out in everyone's favour.

I hate how my entire life has been taken over by EDS. There are always consequences to every action. I miss the days of minimal joint pain, few dislocations, and simplicity. I essentially miss my old life. It was the one that didn't restrict me in what I could do, the one that didn't revolve around appointments and the one where I could be spontaneous.

I’m a believer that the world offers so many incredible and enriching experiences, waiting to be explored. I also think it is up to us to leave some kind of foot print; a positive one. All the places I want to go involve a back-pack, and are off the beaten path. I always dream up these adventures that would give the essence of how people live off the land and simply, but happy. I want to explore different cities, country-sides, and isolated communities to just take it all in, and experience it as locally as possible. I want to volunteer and provide hope for people who are stuck. Now, here’s the reality check of what’s really happening. The majority of what I just talked about will not be possible. It’s a hard pill to swallow and it happens all the time. I know there are ways to make things work, and that other doors are open but I don’t want to go through them. This is one of the biggest things I get hung up on. I have been dreaming of doing things like this since child-hood. This is where simplicity would be nice.

Now that I’ve got that out of the way, there have been good things happening as well. This is where I’m focusing my energy, or at least trying to.

I think it was in the last post, that I was talking about taping my ankles for Taiko. It totally worked! My ankles get tired after about an hour, but other than that it’s awesome. I’m so glad I took the opportunity as there have been a bunch of really good benefits. They’re kind of hard-core about form, posture and how you’re moving your body. I have the world’s worst proprioception, form and posture, it’s been great when the instructor will compliment these things. That my friend; is progress and I’m and going to enjoy it because it doesn’t happen often. It’s also a lot of fun, and very therapeutic. I can bang out my frustrations, and feel like dancing at the same time. I always leave in a great mood, energized and refreshed.

I had a consult to get AFO’s two week ago. Initially, it started like all the rest of my consults. EDS had not been heard of, and I would have to come back for another opinion. I had e-mailed the orthotist with info. on EDS and the link to my blog. I hoped she didn’t think I was a crazy woman, and took some time to learn about it. When I came back, I wasn’t sure what to expect. It soon became clear that she did the research and read my blog. I didn’t have to answer any stupid questions, I was listened to and taken seriously. Needless to say, I was very impressed. I also found out that I could get my braces customized. I thought my options were the fun patterns like the kiddos at work get on theirs. However, I can get pretty much anything I want on there, as long as it in a jpeg. I’ve always wanted tattoos on my ankles and calves but that not happening because I’ll have the AFO’s covering them. Here’s my brilliant idea: I’m going to get the images I want, photo shopped to look like tattoos and put that on the AFO’s. I walked out of that appointment in a great mood, and nothing could ruin my day.

Later that day, I met with a bendy (EDS) friend, and his girlfriend who live about an hour and a half from here. We’ve been talking on facebook for about a year now and finally got our schedules sorted enough to meet. I’m sure we looked classy comparing notes and bendy tricks at the bar. It was so incredible to finally meet someone who is going through the same things, and knows exactly what it life with EDS is like. We both couldn’t believe that we met someone who “got it”, and that we could talk openly without any criticism or judgement.

Hot tubs have also become my best friend. Warm, relaxed muscles + weightlessness=’s the most wonderful pain relief. Yes, I know hot tubs can be gross, but it’s well worth it!

Tips on Living with EDS

- Be proactive and advocate for yourself it really does pay off.

- Don't take "no" for an answer, keep going until you find what works for you.

-Let yourself enjoy the times when things work out, and go well.

"Risk, risk anything. Do the hardest thing on earth for you. Act for yourself, face the truth."

Tuesday, April 13, 2010

Take that bendy ankles!!!

I've been known to blow through braces. My latest victims are my ankle braces. They've managed to last 9 months and are currently being held together with super-glue.

I'm so fortunate to live in Canada where health-care doesn't cost a million dollars. What's very annoying is waiting for funding. I've got to get AFO's, and no one really knew where to start so it's been a lot of running around trying to figure it out.

I got a consult at the orthopedic clinic to see if I meet physical criteria for funding, then have to wait two weeks to get a prescription from one of my specialists. After that, the orthopedic clinic has to fill out and send the paperwork and I will wait even longer. If I do get the funding, then it means waiting to get molds, and having them made into AFO's. Total wait time: 50 million years. However, it's a step in the right direction and I'll take it!

While I was calling the specialist to book my appointment the receptionist who happens to be a chiropractic student asked me my diagnosis. She was the very first person in the medical field to know exactly what EDS was! I was floored, but in a good way.

After Taiko last week I knew wearing the ankle braces was not an option. We have to either wear bare feet or socks in the studio and my braces slide on the floor. I hate wearing shoes so I was pretty happy about that. I ended up having to take off the braces because I had no traction. That meant my ankles were a stretchy mess and all over the place. This week, I have a new game plan. I resorted back to using Leuko-tape for the stability, and super-glued that stick-mat stuff I was talking about on the bottom of my feet. Hopefully it will provide stability and traction. If it doesn't work, I'll find a different way. Take that bendy ankles!!!

"Do not go where the path may lead, go instead where there is not path and leave a trail."

Sunday, April 11, 2010

That's how I roll

I just found something new to add to my "Can Do" list, and couldn't be more excited.
Taiko drumming. Yeah, those really huge Japanese drums...that's my newest thing and I love every second of it. Who doesn't like banging on a huge drum?

I sometimes wake up in the morning and wonder what life will throw at me that day. EDS is a careful balancing act with constantly changing variables thrown into the mix. We have little choice other than to accept it, adapt and make it work.

Firstly being honest about everything and accepting it, is what has allowed me to find things that work. Being honest with myself has been the most important thing. I had to learn to really listen to my body and follow it's lead. My pain tolerance is ridiculously high and trying push through it, will not always make things worth it. I've had to change expectations of myself and what I could still do without major consequences. That ranged from choosing to stay up an extra couple hours at night to choosing not to have my own children. I've also chosen to be completely upfront and honest with my employers about EDS as well. It took some guts and a leap of faith, but I have been lucky to have employers who really try to understand and accommodate me as much as possible. I think part of that success has come from them knowing that I work hard at making things work for myself, and trying to be flexible with them as well. EDS has also messed me up the head . I knew that it wasn't something I could work out for myself and needed to get help. After avoiding it like the plague, and having a harder time with it as the days went on,I finally went and got help. Being miss independent wasn't working for me and I just had to accept it.

Finding things that work for my hands hasn't been overly horrible and I'd like to keep it that way. I don't wear too many clothes with buttons, zippers or snaps because it slows my old-man hands down. I use a rubbery/sticky sheet of plastic (cut to 4"x4" pieces) to help me open jars/containers or hold on to things. I use a lot of Nalgene ( containers and dishes because they're virtually indestructible and I'm constantly dropping them. I use a pen/pencil grip for writing, so fingers won't bend so much or sublux. It also helps decrease the intensity and duration of writing cramps. Keeping my hands warm is key. If they're cold, they just won't work. My bendy friend Sama did a great You-Tube post on writing tools

Keeping warm has been key for me. If I get cold, my joints feel like they're being crushed together, then the rest of my body feels like it's being gnawed on by big invisible jaws. In the winter I walk around the house wearing polar fleece pants/hoodies and wool slippers. I have polar fleece bed sheets (sooooooo comfortable) and put two heating pads in my bed that have an automatic shut off. I take really hot showers/baths and don't let my hair air dry. If I catch a chill, then I pay for it, for the next 2-3 days. When at work, or anywhere else I wear wool socks, long-johns under my pants and usually a sweater with a layer underneath. My coat is a combination of two coats. The inside layer is a wool/polyester jacket from the MEC which keeps in the warmth and is breathe able. The outer layer is a raincoat from the MEC that is waterproof and wind resistant. With that combination I don't get wet or cold.

I'm pretty sure you know by now that using natural medicine has been the best decision I've ever made. I take a bunch of supplements and vitamins (msg. me if you want the list) , use natural balms for sore muscles/joints, get acupuncture, massage and chiropractic treatments. I cut out a lot of foods, caffeine, preservatives and any other chemical grossness.
This link is full of info. on the subject:

Instead of going through life at warp speed I learned to slow down. It definitely wasn't easy, it was a long road and I'm still working on it.The thing that makes me the happiest is being outside. I know I can't paddle, hike or play contact sports anymore but I can still take short walks, and literally stop to smell the flowers. Now I can stop to feel and smell the leaves on the trees, I can watch the shadows from the leaves dancing in the wind, I can take a deep breath and just enjoy it for what it is. I can sit in the warm sun on my balcony and read or take a nap. Best of all, I can play my didgeridoo. I've always hated yoga and any kind of breathing exercises. They were the most boring thing on the planet, so boring that it used to stress me out. With my didgeridoo, I'm getting all the benefits of the breathing exercises but it's disguised and I fall for it every time. I end up relaxing, zoning out and getting completely distracted from pain. It's also very possible to play a didgeridoo laying down. Some of my best times playing the doo' is when I'm stuck in bed and tired of reading.

When I can anticipate a bad EDS day, I do it my way.Last month ,I had simple GI day surgery. We all know it's not so simple when you've got EDS. I knew I'd be feeling like crap as soon as I woke up. I had to fast the night before, be up early (mornings don't work well for this girl, they hurt) and have to deal with a whole slough of doctors who had no idea what EDS was. Not to mention the whole pre. & post-op bit. After trying local anesthetics 5 times they gave in and sedated me. It was wonderful. I had an awesome nap and didn't feel a thing. Upon coming home, I felt like I was hit by a truck. Luckily I had done a pre-emptive strike and was ready to make it work for me. I had a bucket of vanilla ice cream, a variety of pop and a frosted glass ready for a ice cream float. After polishing off that delicious float, I took some Po-chic (Chinese medicine for upset stomach), grabbed a hot shower and crashed in bed for a nap. A couple hours later, I woke up ready for an acupuncture treatment which is about a 30 second walk from my front door. That's right, I made my crappy surgery day work for me! What could be better than coming home to an ice cream float, hot shower, nap then acupuncture?

Tips on LIVING with EDS

Don't be afraid to try new things. Something may not work one way, but who says it can't work another way?

Be honest. It's not always easy but it makes life a lot easier when you're not trying to convince yourself of something else.

If you're having surgery, plan ahead to surround yourself with everything you like when you get home. Recovery is so much more pleasant that way.

Don't ever stop trying to make it work for you. Lift your chin up, and keep going.

"Do what you can, with what you have, where you are."

(Theodore Roesvelt)