Tuesday, March 30, 2010

The school of hard knocks

I believe it is a fact that we never stop learning.
Our experiences are sometimes wonderful, others are just hard. It can be a lonely road doing it all by yourself, and even lonelier when you feel as if you have the weight of the world on your shoulders. Through it all, we learn and grow. Sometimes, we find our niche and thrive.

Some of my hardest yet, most valuable lessons have taught me to be patient. I had a lot of a certain kind of patience. I teach kids who have autism..I didn't have patience for anything else. I learned that getting stressed or anxious will not get you anywhere. In fact, it makes things worse. We can't change the past, and can't predict the future, so is there really a point in dwelling on something we can't change, or have no control over? We can have an idea of what we think might happen and hope is always something we can hold close. But what happens when our hope and assumptions of what we thought might happen, don't work out like we thought it would? The only thing we can do next is live in the now. Take each moment as it happens, live though it and move on to the next moment. This has taken me a long time to learn. After spending the day at the hospital getting tests, going to consults and all the other fun things involved with EDS, the last thing we want to do is wait for an answer. I found it pretty common among the EDS community, that most of us looked and waited years for an answer. Yes, we just want to know what the dealer will give us in our next hand of cards, so we can have an idea of how to play them. (Hahaha what a cheesy metaphor. As you can tell, I don't play cards.) The fact is, that after those long hospital days, there is nothing more we can do about it other than to just wait. Stress and anxiety won't make the phone ring any earlier. The wait, can be agonizing and torturous. I'm a big fan of keeping busy. I like to sometimes loose myself in a good book, take my bike for a ride, play my didgeridoo and eat ice cream. When the answer does finally come, we usually end up having to change our game plan anyway.

This is when adaping to whatever happens becomes handy. EDS is discustingly unpredictable, and it's the story of my life. Instead of sweating it, I've learned to adapt. There will always be a differnt way to accomplish something. It may not be what we wanted, but new doors will always be open, it's up to us to go through them. I'm the girl who'se suppose to be going to school in England right now for something that I love doing. EDS happened, and it was one of the hardest decisions I've had to make. Giving up something you love, and worked hard for is never easy. I had to change my game plan, and after a lot of searching I've found something worthy of a new persuit. It wasn't what I had originally invisioned, but now it's possible and I want it.

I have Scottish and Irish blood. That gives me an iron liver for drinking, but a horrible temper.
I could go from being care-free to livid in about 5 seconds. Even the thought of EDS would make my blood boil. I would get angry that it has taken so much of my freedom and ability to be spontaneous away. I hated that I could no longer do what I loved, and that I was stuck in a body that hurt all the time. I'm not saying that I don't feel that way anymore; not every day is sunshine and lollipops around here. I learned that anger is a visious cycle. We get angry at our current situation which would seem justifiable. But what can we really get angry at? We can't be angry at our parents for giving us crappy genes, we can't be angry at our bodies and we certainly can't be angry at ourselves for making the choices we did to try and cope with everything. I've learned to sit back and take a minute (or a lot) to think about wether or not it would be worth getting angry over something. Getting angry won't change anything, I think it would make it worse and the most we would get out of it is an adrenaline rush. I will be the first to admit there's nothing like screaming like a three-year old and throwing things. It feels great for that moment, but what happens when you're done screaming and have to clean up whatever you broke? You're back to where you started, angry. Having a good cry can sometimes help, aside from the stupid crying headache afterwards.

Tips on LIVING with EDS

- It's spring time, literally stop to smell the flowers. It's wonderful.

- Go through the 80% off bin at your local Chapters, there are a ton of good books that will be welcomed on days when you're stuck in bed. Don't be afraid to stock-up.

- We all need some kind of outlet. If you've had to give one up because of EDS, don't give up on trying to find a new one. You never know what you'll find.

- Experience sometimes hurts, learning feels great. Blaze your own trail because there will always be another way.

"Finish each day and be done with it. You have done what you could; some blunders and absurities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it scerenly and with too high a spirit to be encumbered with your old non-sense." (Ralph Waldo Emerson)

Thursday, March 25, 2010

Clothes and braces, a horrible combination.

I'm out of my funk and ready to kick some blog-ass again!
Classy, I know.

Over the years I've found a bunch of things to make life with EDS a little easier. When you have EDS and are stuck wearing braces, your clothing options can be limited. Braces have the amazing capability to wreck your clothes and give you horrible tan-lines. Mine were epic. It's hard to find something that is comfortable, practical and button, zipper, snap free. This also goes when your hands don't like to work. As a heads up, I will refer to Mountain Equipment Co-op as the MEC (they should pay me for this) .

When you've got to wear a brace like this:

You become a pro. at over-heating, sweating and becoming miserable. Not to mention, the brace itself will wreck ALL of your shirts. Quick-dry, breathable shirts are your saving grace. I have about 10, and spent the majority of the 1.5 yrs in that brace wearing those shirts. They are very comfortable, no buttons, snaps or zippers and are durable. You can get them from the MEC.

When it came time to get the ankle braces, I still refused to wear socks and shoes. Bad idea, you need some kind of socks. I found the greatest solution!!! I went the MEC and got some sock liners. Here's what I did to them...I cut off the toes and a little more. That way I could wear sandals, or "bare feet", my toes could still breathe and I wouldn't draw as much attention to myself. They're very light, quick dry and pretty durable.
Here's what the final product looks like:

Summer is also not the time to be wearing a huge shoulder brace and a long-sleeved shirt. I couldn't get away without anything between my arm and the brace, because the velcro would tear away at my skin. So.............I took a black sock (to match) and cut off the foot. Before putting on the brace I'd pull the sock up my arm, put on the brace and fold half the sock over the arm-section of the brace. It was a win-win situation. I could wear whatever shirt I wanted and the brace too.
You'll have to look hard but here it is:

I used to love, love, love going shoe shopping. I had "too many" shoes, as any man would say. After getting the ankle braces, I had to get rid of most of my shoes. It was a very sad day.
Now, I loathe trying to find shoes that fit. I have yet to find a pair of fun-girly shoes that fit well with the braces. I refuse to buy anything that costs more than $45 for a pair, because they'll get destroyed from the braces in about 2 months. Once again because I'm a MEC whore, I have found some really good wide, supportive, practical, water-proof, durable EDS friendly shoes/boots.The brand is called Keen (I have their paddle sandals too, but can't wear 'em anymore)I've had them for 6months, and yes the braces have eaten the insides of them but they're still in really good shape. For sandals it took forever to find a pair that would fit with the braces and stay on my feet, but I found a pair. They're Teva's I also have the pair of their shoes (middle pic.) that are brace friendly.

I know I'm not anywhere close to being a fashionista (not that I care), but I am comfortable. Everything fits, my skin is still intact and it works for me! Finding fun clothes that work with EDS has been a chore, but I've been lucky to find things I like.

Tips on LIVING with EDS

Comfort should be your #1 priority. We're already uncomfortable enough with the pain, why make it worse with clothes?

When shopping find clothes that are practical. When I say practical, it means that it should be practical for you, forget everyone else you're the one wearing it.

Don't get hung-up on what you can't wear, it's better than wearing a moo-moo.

Don't EVER be ashamed, be proud that you made it work!

"When life gives you lemons, clone them and make super-lemons!!"
(Clone High)

Monday, March 22, 2010

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)

Saturday, March 13, 2010

Let's try this again.

So, it's been about 8 months since I last posted.
Life happened and now, I try again.

In my last post I was suppose to see the geneticist, and that I did.
I've definitely got EDS type 3. woot! Now, I'm not saying I'm excited about having ineffective glue; but I'm relieved that there is a name that go with all the symptoms and that I'm not crazy. For years I was told that it was in my head, and that I was looking for attention. It's not like I don't have anything better to do with my time and money. Seriously!

I still have a really hard time going to any "normal, Western medicine" doctors and have major trust issues. It is very rare that I will be listened to, even if I provide concrete, sound literature on EDS. I still get the "What the hell is this, what the hell is wrong with you?" ,
"That's impossible, you're making it bigger than it really is". On and on it goes. Or my favourite one being that local anesthetics don't work on people who have EDS. Even with the reading in hand, and you telling them you can still feel everything...apparently you're lying. Sedation='s my best friend.

Interestingly enough, the geneticist was very impressed with my being pro-active and creative. They are using me as an occasional resource for other patients, because they don't have the info. on how to get by with the day to day stuff. It's all come from flying my the seat of my pants. If it helps someone else, then my job is done.

Since then, I've learned a lot about this crazy body of mine.
I've learned that you can sublux your neck sleeping, and that massive migraine isn't a hang-over.I've also come to accept that things won't get better (symptomatically) and you have to just keep going. Life won't stop because you're having a rough go at it, so it's best to continue being creative, and be ready for anything. You can laugh or cry about it, I choose to laugh because sometimes it's the only way.

My list of "Can Do's " has gotten significantly smaller. With each item that gets crossed off that list, it's like a kick in the teeth. The biggest loss has been, kayaking and canoeing. Being on the water, is where I feel whole. It's my happy place. That very same element has been something that provided me with both adrenaline rushes and complete relaxation. I could easily spend 7 hours on the water at one time. This isn't the case anymore and it's been rough. This past summer, kayaking started to become dangerous. My hips kept subluxing (you use your hips A LOT when kayaking), I kept popping ribs and my hands would loose all their strength. Not to mention shoulders dislocating hunderds of times. I knew it was something that I would have to eventually give up, but I wasn't ready yet. Canoeing is something that I can still kind-of do, maybe. There won't be anymore 7hr days on the water, and river-running might be a thing of the past. I'll have to be content with 2-3 hours playing in the swells or on flat-water. But, it's something, and I'll take something over nothing.

Going to the climbing gym, yeah that's not an option anymore either. I can say that I'm thankful for what I was able to do given the circumstances.

There are still some "Can Do's" that are keeping me sane, and I've recently found some new ones. Yes I can still bike-ride, skate, roller-blade, sing at the top of my lungs, play my dideridoo, and the newest additions: playing hand drums and making soap. This is where my energy is focused.

As for my current jobs, well there has been a lot of adaption to say the least. I want to my able to work as long as possible because I love them. There's no way around that. I've found something that I would like to pursue when my current jobs aren't on the "Can Do" list anymore. It's plan "C".Plan "B" is a very slow, top-secret work in progress.

I'm still learning to ask for help and accept it. I hate it. I'm the one that's suppose to be helping other people. I can dish out the advise, just can't take it yet. Through all of this, my friends and family have been the most vital support system in my quest to be as independent as possible. Without them, who knows what I would be doing. I don't really want to know. They know I don't want a pity-party and need to do things for myself. I sometimes need to vent, but never want pity. It doesn't get you anywhere.

Tips for LIVING with EDS

If you have dislocaty shoulders, carry a back pack.

In that backpack, always have the following items: tape, heat/ice patches, medication/supplements and a tensor bandage. This will allow you to be more spontaneous and deal with things as they happen instead of stopping the fun at that moment.

Be proactive. Get EDS literature and copies of all your files in an organized folder, keep them up to date along with that literature. Bring it to all of your consults and big appointments. It will save you and the specialist a lot of time from having to answer a million questions. They also tend to take you a little more seriously.

You know your body best, listen to your instincts. If you're stuck with a doctor you don't like, who won't listen to you, cross them off the list. Find another one who will listen, it's a HUGE pain, but vital to your well being.

Having EDS will probably mess you up in the head. Don't be afraid to get help.

Do what works for you.

"Blessed are we the flexible, for we shall not be bent out of shape."

Renee Locks