EDS+ Dysautonomia + Mt.Sinai ER ='s AWESOME!!

I guess, you weren't expecting my title to be so enthusiastic, considering it's contents.

I spent Monday afternoon in the ER due to dysautonomia craziness.
The weekend was fabulous, I had energy, low pain levels and felt like a relatively normal person. The exception was that I didn't really sleep the entire weekend. My body wouldn't let me, with the almost constant adrenaline rushes.Monday morning, I woke up feeling gross. I had the text-book EDS type 3 autonomic (over-response) issues. Upset stomach, dizzy, feeling faint, exhausted,sweaty, elevated heart-rate, palpitations and just all around gross. I decided to go into work and was sure I could make it through. Definitely thought wrong.

On way to work... barf! So that was the end of work,I knew it it wasn't going to get any better. Last time I felt that way, it lasted more than a week. My suspicions of an ANS disorder were totally confirmed at the EDNF conference. I figured I would be smart about it, and head to the ER to get myself sorted out. I ended choosing the hospital where my geneticist and GI specialist worked out of, figuring they'd already have some of my stuff on file. I went in, and didn't have to wait. Handed the triage nurse my OHIP card, my card from the hospital and the EDS info card form the EDNF. http://www.ednf.org/index.php?page=shop.product_details&flypage=flypage2.tpl&product_id=18&category_id=12&option=com_virtuemart&Itemid=88889131.

The triage nurse was eager to take the card,do some quick reading and let me explain it to her. They got me a bed, and I saw the ER nurse to get vitals and blood work taken soon after. My HR was 114 and my BP was 138/96.My ECG synus rhythm came back irregular, and my WBC's were a bit elevated. I asked the nurse if the IV could at least be done in my hand, so I was free to move my arm and wouldn't dislocate everything. She said she'd try it, and also take a shot the blood-draw through the line too. She totally rocked it and did the it all in one shot! In the meantime, the Dr. was doing some quick EDS research and saw me shortly after. He asked me all about the symptoms, how it's normally treated and what I wanted to do. How awesome is that?! I ended up getting 1L of non-saline fluids and 50mg of Gravol through the line too. I had a little laugh to myself, when there were people thinking the world was over because of a sprained ankle. At one point asked an other nurse if there were any extra pillows I could use to position my body, so everything wouldn't dislocate. They didn't have any, but offered me as any blankets as I wanted, and we'd fold them up. After I got myself positioned, I had a bit of a nap and woke up to realize that my fluids were only 1/3 done. The fluids and blood draws took forever...EDS thing? A bunch of text message conversations and a nap later, my fluids were done and I was ready to go home. I finally felt human again and was ready to jet. They took my vitals again and my HR got back down to 65 and my BPwas 111/63. The Dr. thanked me for my patience, and for knowing about my stuff with EDS.

Not once in the 5ish hours that I was there, did I have to fight, make any request more than once or try to prove myself. I was listened to, taken seriously and treated with such awesome care. That was the first time in 13 years of dealing with this EDS mess, that any of this good stuff has happened. It was incredible, and may have renewed my faith (just a little) in the western medicine community. I had the best sleep of my life that night!!

The next day, I ironically had an appointment with Awesome GP so we got to catch up on everything post-conference. He was really interested in the whole thing and I think finally understood the complexities of EDS and autonomic issues. I gave him a print out of the Sleep/ ANS disorder discussion from the conference, he seemed pretty excited to check it out and learn more.

So when a cardiologist refuses to see you and says "there's nothing wrong with you, you were fine last year, so you're fine now", your body will eventually prove them wrong. Synus rhythms don't come back irregular for nothin'.

Know that despite all the horrible experiences we encounter day in and out with doctors and other medical professionals, there are some awesome ones out there and they kick ass!

Thank-you Mt.Sinai ER!!!

"No one can make you feel inferior without your consent"
(Elanor Rosevelt)

Real sleep is over-rated

The saga continues...
In one of my recent posts, I was talking about my body's newest ability to sleepwalk. It started off with me walking around my room and talking when I actually managed to sleep every so often. Then it escalated to me walking around the entire apartment, attempting to make food, looking out the windows, leaving multiple cartons of juice in the middle of the kitchen floor and scaring the shit out of my poor room-mate everyday. I still have no idea how I didn't manage to hurt myself. No new bruises, cuts, dislocations...very strange. I know at the peak of it, I was having horrible anxiety and was working through a bunch of EDS related emotional junk. Realizing that nothing is the same from the previous year; pretty much everything I lived for had to be given up because of EDS, and knowing it will most-likely continue on the same path totally messed me up in the head. The supplements I was taking to help me sleep were no longer working, and I couldn't calm down to save my life. All those coping tools that I have didn't do anything either. Sleep deprivation made the pain worse, and pretty much intolerable. There were a few nights I considered popping an Oxycontin in desperation for some kind of relief. I had them left over from my disaster of a root-canal last year, and didn't take any of them then. When I subluxed my neck in May, I didn't take anything either, WTF? Why did I feel the need to take one now? Have I ever mentioned that I effing hate EDS ?

Thankfully, I somehow managed to ride it out, and be a semi-functioning member of society for two weeks that seemed like a blur. The following day, after I really scared my room-mate (she thought I was a rapist that broke in) I got my ass on it, and booked a bunch of appointments to get myself sorted. Now it wasn't only affecting me, and I refuse to be someone who makes people feel uncomfortable in their own space. That day, the referral for the neurologist finally went through and I scored a consult. This is for the suspected dysautonomia that I've been fighting to get diagnosed. I meet all of the criteria, and have all of the symptoms. Thank-you EDNF conference for confirming all of my suspicions. Anyway, I ended up going to the naturalpath to see if she could find some new supplements and remedies to help. It was so nice being able to say whatever I needed, without being judged and knowing that I wouldn't be leaving her office being told to fend for myself as a solution. Instead, I ended up leaving with a new supplement that helps all of my current issues while she comes up with a new game-plan. The supplement ended up helping with the anxiety but I still wasn't sleeping, however I didn't sleep walk so I was okay with that. I found a new acupuncturist who also does Reiki, reflexology, Tuina Massage and Qigong...Holy awesome Batman! A few days later I had my treatment and left feeling balanced, in control and like a million dollars. That night, I slept for 7 uninterrupted hours. That was the best sleep I'd had in a month and it was wonderful. I'm still able to get to sleep in a reasonable amount of time (considering everything) and I thought I was staying asleep for about 6-7hrs until my room-mate informed me that I'm sleepwalking again. It's not as intense or frequent, so it's a step in the right direction. When I was in high-school, I had a lot of friends pass away, and I slept-walked then. Even now, I sleepwalk when any of my friends go to meet their maker. So it's probably a grief/loss response. If I were to deal with all the emotional junk, I'm sure I'd probably sleep a lot better. So much easier said than done.

I think, wait... I know I just need to have a good cry. I haven't really let myself get upset enough over how much my life has been turned up-side down, and it's all bottled up. It's so much easier in the short-term to push everything back, and avoid dealing with something that is painful and scary. It's also easier to dish out the advise than to take it. My biggest problem with it, is that I can't get started. I get so hung up on pushing it back and moving forward that when I should let myself get upset I can't do it. The only thing that seems to set me off is fighting with doctors and even then, I don't cry in-front of anyone, so I push it back if I'm at an appointment, or will wait until I'm off the phone if I have enough time before work. Considering all of this, it doesn't happen often and is always very short-lived. I can't waste time crying about it, I've gotta get back up and keep at it, with a smile dammit! I sometimes ask my friends to say mean shit to get me started, and that I won't take it personally...I don't know why they all refuse to do it? I did have a friend offer to sit with me and let me just be whatever it is that I need to be. I've also been lucky enough to have another friend offer the same thing. I will say that has got to be one of the most supportive and loving things I think someone can do. Too bad, I can't get the courage to take them up on the offer. Over the years of trying to get a diagnosis, regressing, having everyone question what's happening and being accused of some pretty crazy shit that I'd never even think to do, has resulted in me loosing trust in almost everyone. Barf! Thanks EDS.

So for now, I just ride it out and try to cope the best I can. I know with new supplements, more treatments and making myself deal with things as they happen I'll be in a much better place. I've managed to spend the weekend being super-productive while pain levels were pretty low. Laundry, dishes, cleaning, cooking done. Letter to the City of Toronto to fix my broken wheels sent, more scholarship and funding applications filled out, appointments booked, and school application is coming along. With the exhaustion of the week itself, then getting everything done in one day, left me too tired to go out and do anything. I must say that I have awesome friends who will come over, and chill on my bed with me. We'll throw on a movie, play cards or a board game, and whatever else. I'm going to feel like I live on campus at school forever. That's okay, those were the very best times of my life. With everything that's been going wrong, or not working out the way I'd like I've come to realize that even in the midst of this hell that I have some amazing opportunities sitting right in front of me. I have the option of walking away from a job to go back to school and start something that I'm becoming more passionate about each day. I'm not tied down to a mortgage, car payments or babies which leaves me with a lot more freedom than most people my age. I can essentially do whatever I want, kind of. One thing I learn over and over, is that no matter what's been thrown at me I've still been able to make stuff happen and find ways to make it work for me. If this girl can do it, anyone can.

I've got a follow-up with the GI specialist next week. I need to get another endoscopy and biopsies done soon. I'm going to bring up the g-tube idea, it's becoming too unsafe sometimes to eat. I blocked off my airway 3 times this week, not cool. Throw in the dysautonomia, more muscle weakness in my face and TMJ issues, eating isn't as enjoyable as it once was. I've been loosing weight, and all my clothes are too big. I'm kind of okay with it, but it's not healthy when it was accomplished being really sedentary. I hope I can convince him of something, I'm going for quality of life here.

My brain hurts from writing all of this, so I'm sure your brains are hurting from reading this jumbled mess.

"Good times become good memories. Bad times become good lessons. There's always something good that comes out of every life experience. You can never loose, you can only gain from life."

It's different, positive and has nothing to do with EDS

A lot of my friends have been having a rough week, myself included. So I've decided this post will have nothing to do with EDS, and have everything to do with positivity. Below are some of my favourite youtube videos. Hopefully, everyone will take away something, get a good laugh and keep pressing on.



















And for the grand finale, my bendy friend sent me this a while ago...


Sending the juju, keep your chin up!

"Unicorns do exist. They're fat and called rhinos now." (Angela G.)

The circus comes to town

In between now and my last post, the EDS circus came to town. It's been nothing short of crazy but hey, at least it hasn't been boring and monotonous.

I spent from Friday until Sunday in bed. The weather was rainy and gross in addition to my hormones going crazy (I'm sure you wanted to know) which left me feeling like chewed gum. The big-invisible jaws were gnawing on me the entire time. Woot! Sunday the Toronto and area Bendy Posse had planned a day to spend on the island. Yes, Toronto has an island, it's a giant park and nothing short of awesome. We had planned to spend the perfect day there but it was a swamp from all the rain and it was still raining. We ended up going out for lunch instead. mmmmmm

On the way there I broke the wheels. Yes, you read it right...I broke my wheelchair. I was going across a cross walk, on the other side was a raised curb. My bendy friend who came with me, helped me maneuver alongside the traffic (because the light had changed) and up a sloped curb we eventually found. In those moments of craziness, my front wheel broke. The plastic "spoke" bit snapped, and the wheel itself came loose constantly collapsing on itself. I've been calling around the City of Toronto to find someone who will help me get it fixed and pay for the repairs.

My room mate has also informed me that I have been sleep walking. WTF?! When I think I'm sleeping through the night (on those rare occasions) I've been walking around my room talking and laughing. I make my way to the washroom, then the kitchen to turn on the taps. There really isn't a need to for me to be up, and I keep a liter of water beside my bed. She says I do it all in the dark. One of my biggest questions, is how do I manage to do all that and not hurt myself? On a regular day I'm a proprioceptive mess.

I know that trying to get back to school, dealing with all that EDS has to offer and turning to mush hasn't been particularly nice to me emotionally, but I didn't think it messed me up in the head that much. I think it may be that during the day, when I'm at work, or out and about I'm distracted. It's the time before work (mid-morning) and when I'm going to sleep is when it all catches up to me. Those times are usually spent at appointments, filling out paperwork and fighting with doctors and for funding. The majority of those result in "defeat" or rather another obstacle and more red tape. My favourite things. For the most part, I can pull it together and be on my way to work. I turn off that part of my brain, and let go of the anger, frustration, sadness and fear.

I get to work, and loose myself in a world that is filled with play, art, teaching and magic. This week included getting an ass-kicking in public, with curious by-standers. Quote of the day "He's fine, just a tantrum." I'm surprised no one called the police. Even with that, I love my job. There were a few times at work this week that were a cruel reminder of what I've lost. One of the kiddo's asked why we weren't going paddling and to the climbing gym this year. Last year, I took him paddling and he had a ball. We went climbing every week, where we worked on co-ordination and motor planning while pretending to be Spider-Man. Kiddo used to live for the climbing gym, he loved it and has made incredible gains from it. Going to the beach is awesome, but I'm not the only one who misses experiencing the world from the water and off a wall.

Just before bed, I spend a couple of hours winding down and trying to make peace with the negativity that likes to creep in. Sometimes I can make it work, but it is rare. Most of the time I end up crashing with thoughts of all the negative things that have been thrown at me that day, or things that have been eating away at me. One of the things that people are often asking, is if my plan "C" will work, and what I'd do if it didn't work. I'm given reasons of why it can't work, what I should be doing instead because it's the "safer" choice and that I shouldn't be risking anything. I've also been thinking about weather or not I want to have kids anymore. Adoption has always been in the plans, but now I'm not sure I even want to do that. There is nothing more that I'd love to do than to be a mum. I've always wanted to travel the world with my kids, and let them experience all the enriching things the world has to offer. I can't do that when I'm stuck in bed,need a wheelchair or am just plain exhausted. It's possible for lots of people who have EDS to raise kids but I don't want to if I can't be the mum that I want to be.

I sometimes wonder when these hellish days that seem endless will finally be over, and if things will ever start turning around. That's usually when I stop caring about everything all together, and that's not cool. Life is much easier when you've got goals, drive and passion. When those things are gone, even temporarily, it becomes much more difficult to make it through the day. Slapping on a smile, and going through the motions works but I never get anything out of it, numbness is sometimes the only constant.

This weekend, I was involved in a study on EDS and proprioceptive awareness. The cool thing about it is, one of my bendy friend's girl-friend is running the study for her thesis. It was nice going into a lab, and having the person running the tests know what living with EDS is like. She was more than prepared to give us breaks to lay down or stop when sitting and doing the tasks became painful. I didn't have to explain any of it, she was the one who put it out there and that was awesome.

I've learned to look past all of the "milestones" people my age generally "achieve". I know it's unrealistic to have the same expectations for myself and quite frankly, I'm not ready to slow down and start being a "grown-up". I don't want anything close to a mortgage, or to be tied down at a job where I can't just get up and leave. For that, I am happy. Even with all the craziness and uncertainty there are major benefits. I'm trying to look at regression and loosing everything as opportunities to try new things and experience the world through a new set of eyes.

I'll finish this never ending post with something positive. After I had the disaster of a root canal done in November, I lost the ability to clench my teeth and fully close my mouth. That resulted in a bunch of TMJ issues and all the fun that accompanies a joint that is very unstable. I woke up on Friday morning and my jaw was really tight. No surprise, that was normal. The more conscious I became, I realized that I had been grinding my teeth and I could clench my teeth. Hopefully eating will become a little easier and I'll continue with that up-swing. The chiropractor has been doing Active Release treatments on my jaw for a while. It can hurt like a mother, and is totally worth it. It took ten months, but I made PROGRESS. Such a beautiful word.

"Invariably, a sudden disappointment, a bit of "bad" news, or a flock of butterflies gathering in your stomach, are all omens that a fabulous adventure is fast approaching."

Out of the poopy stuff comes enrichment

Loss, it's been a big thing around here. I won't lie, it hasn't been easy. There are many days when I really miss my old life. A huge list of things I miss could be placed right here, but it's unnecessary. Making a list won't bring any of it back, or make it any easier to deal with. Instead, I'll go on about the enriching experiences that have come from this mess, and all the things that make me come alive.

I don't think I need to talk about how important the switch to natural medicine has been for me. I'm sure you all know by now my thoughts on it, and how important it is to my overall well-being.

Because I love food, we'll start there. When I first gave up eating wheat,dairy,corn,oat,grains and caffeine the whole idea of living without these things looked daunting. How would I get by without all of it ? The first while was a little hard. I had to replace pretty much everything I was eating and find a new way of doing it. Almost right away, I noticed how much better I was feeling. I didn't have insane reflux or stomach upset instead, I had energy and felt like a million dollars.

I used to spend a lot of time on the water, I'd be in a canoe or kayak as much as possible. I've made some incredible memories and wouldn't trade them for the world. Finding new outlets to replace paddling was hard. I didn't think there was anything that would come close, and there hasn't been. It may be that I don't want to believe there's anything better, or abandoning that idea would somehow make me loose that part of my life's story. Either way, I have had many new and brilliant things come into my life that otherwise wouldn't have happened. For that, I am thankful.

There is nothing better than hanging out in a park with friends on a warm, sunny afternoon. Throw in some alcohol and other deliciousness, and life is good. Drum circles on a summer's evening with a whole bunch of people just chilling out, dancing and jamming with their own instruments is also a blast. Let's also not forget all of the festivals that happen with a bunch of friends.

If I were still able to paddle, I would have left the city for the G20 and gone to play in the water somewhere else. Looking back, I'm glad I was there to experience it and see more of the real problems that are happening in my back yard. What happened to this city during the G20 summit was horrible. There was a disgusting amount of police brutalization that thousands of people had to endure for no reason. So many of our rights were violated. The police force, and the government were caught lying on multiple occasions trying to make Toronto's diverse group of advocates look bad. People who are responsible for the mess keep passing the blame and pussy-footing around the subject. They're cowards to say the least. This has allowed me to be one of the thousands of people who's voice won't make the problem just go away, or let the public and the country forget what happened. We're in it for the long-haul and it will eventually get dealt with, justice will be served for all of the people who suffered at the hand of the police and the government. Nobody ever got anywhere by being quiet.

Having to give up climbing has lead me to start taking Taiko lessons. I miss scaling the walls, but banging on a huge drum with a bunch of cool people is just as awesome, maybe even better.

I'm going back to school. I can't do my jobs anymore and need something different. As much as I love what I do, it's time for a change and I've found two things I'd love to do. Being an Art Therapist or a Child-life Specialist will allow me to continue working with a holistic approach and give me more opportunities to work with different populations of people. What could be better than playing and doing art for a living while helping others become okay with what's happening to them ?

I guess the most enriching thing that's come from all this EDS poop is figuring things out spiritually. I found something that makes sense, is practical and something I put into practice all the time. It's allowed this transition to happen probably a lot less painfully than what it could have been if Buddha had not been my home boy. A lot of people ask how I can stay positive as often as I do, how I manage to chill out and get back up when I get knocked down. Well that's my answer....

The other priceless experiences are the ones I see everyday. A lot of people think that living in a big city means I'm at risk for ending up on the 11pm news. I'm glad to say that's not the case. I've met some of the most incredible people while living in this city. One of the things that I love is all the diversity that surrounds me each day. I've been able to check out the incredible cultural neighbourhoods and get a little glimpse of life from all over the world. I've met people from different socioeconomic backgrounds and have had some amazing conversations. The biggest commonality with everyone I've met is kindness and it's humbling. Sure, there are still all the things that happen in a big city and a few bad apples, but I see kindness everyday from all the people who make up the place where I love living.

"Don't ask yourself what the world needs, ask yourself what makes you come alive. And then, go do that, because what the world needs, is more people who come alive."

(Howard Thurman)

Three words that are often ignored

There are three words that are important, often ignored and are a sign of good things.

These words are: I'm fine, thanks. It seems so simple, but it is often over-looked.

I went out to a movie with my friend last night (Scott Pilgrim vs. the world='s awesome!), and took the wheels. I had a lot of obstacles to get through because the city isn't really all that accessible. Regardless, I could make it on my own no problem. There were a lot of people who asked if I needed help, which is lovely to think about it. I'm glad I live in a city where people look-out for each other, I see it everyday. What drives me absolutely insane is when they offer help, I tell them "I'm fine, thanks" (with a smile) and they still try. It usually comes in the form of questioning, or them physically trying to help me maneuver. Even when I pull out the "I promise, I'm fine thanks" in a firm tone, they still seem to ignore it. Maybe I should start barking like a dog, and embarrass them instead. It was really hard to contain my anger and frustration. I did it because I don't want to burn any bridges for other people who would need and appreciate the help. Just because I've got wheels, or it appears that I might need help it doesn't give ANYONE the right to ignore me, invade my space and not trust that I know what I'm doing. On the flip side of that, there's feeling like a burden. I know I'm not a burden, it's all perceptive. I don't think many people realize how important independence is. It got to the point where I was about to have a little melt-down on the subway platform waiting for the train. This is coming the girl that doesn't really cry, and never cries in public. Ever. And then, there were people saying "God bless you", WTF?! Seriously?! "Oh, that poor girl in a wheelchair"... give me a break!

Today I was talking with a friend who's been trying to convince me to try this new treatment for a while now. There are three reasons why I haven't tried it yet. The first being money, getting the other treatments makes me broke, but they're essential so going without isn't really an option. I also needed to learn to process and accept EDS for what it is, and learn to live differently. The last reason is why I pretty much lost interest today. I know my friend is trying to get me to do this out of concern, but when I feel like I'm being lectured or have to defend my choices, I stop trying to like the idea. It didn't help that I was told that the reason for my wheels is from me getting the chiro,acupuncture and Active Release treatments. Forget the fact that EDS is degenerative and that according to the specialists at the conference, I'm doing everything right. I don't want to have any part of a treatment model that does not involve a multifaceted approach, or puts blame on other treatment providers that have been nothing but effective for me. I pointed out that I was getting frustrated with the conversation and where it was going but I'm not sure I got the message across. 2/2 days where I've felt the need to cry about it. I'm on a roll!

Just after that, I had a friend message me on FB to tell me a story about how they gave up their seat on the bus for someone who had crutches and braces, and how they were doing their part for the differently-abled. Ummm how exactly was I suppose to respond to that? "Do you want a cookie?". Do we really need praise and acknowledgment for being conscience of other people and their potential needs, also for things that we should do everyday anyway? As if being aware you're someone contributing to the universe, isn't good enough. Cookies for everyone!!! I think I should start giving out gold stars.

I'd like to thank my friends who respect my decisions, and let me do things as independently as possible, even if it drives them crazy.

Back to those three words... "Im fine, thanks"
There are good things about it. It shows independence, which is hugely important for us and just about anyone else. It shows we can handle things as they are, and personally, I find that empowering. Lastly, when we're fine, we're not in agony and that my friends, is priceless.

"Someone's opinion of you does not have to become your reality"

I have angered the EDS gods

Since my last post, I have not used my wheels.
This is for a couple of reasons. The first being, that I took it all pretty hard. The reality of the whole situation has been a tough thing to accept. It makes things that looked possible now appear daunting. Hopefulness and excitement sometimes turn to dread and other fun thoughts. The list of "Can't do" has gotten a little longer along with the "I'm not sure if I want to" list. It's a good thing that these negative, less enjoyable emotions and thoughts are only temporary.

As much as I love living in Toronto, it's not accessible. I'm so used to having legs that can walk me anywhere, and fast. Wheels and things that aren't accessible do nothing but slow me down a lot. I'm one of those people who have always walked fast, and sometimes want to throw stuff at the people who crowd the sidewalks slowly meandering in every direction. That combined with wheels makes me CRAZY!!! I went to Kensington market the other day http://www.kensington-market.ca/Default.asp?id=1&l=1 it's a couple blocks filled with independent stores, restaurants and community art. It's very pedestrian friendly,but not at all wheelchair accessible. I love going, but it's now grueling. The trip was worth it, as I got the most delicious vegan sandwich at the Urban Herbivore. http://www.urbanspoon.com/r/10/136285/restaurant/Kensington-Market-Chinatown/Urban-Herbivore-Toronto. On the way home, I found a Chinese medicine herbalist store. The stinky analgesic plasters (aka my new boy friend) we on sale, woot! It doesn't take much to make this girl happy.

The other night I must have angered the EDS gods. I was using my lap-top when I dislocated my middle finger. My index and ring finger are a little sore, but I think it's due to inflammation. The middle finger is being held (supported) together with Kinesio-tape and also gets iced. Can't use the wheels when you've got one working hand. I had to laugh, as of right now, I'm down to one working limb...It's a good thing I'm used to doing everything with one hand and have learned to adapt years ago. Today at work I took kiddo to the beach, we try to go at least twice a week. He lives about a 15 min walk, and it's such a great place to teach a ton of skills and apply things we've been learning in science. There's nothing like being paid to teach a kid how to be a beach-bum. There's major therapy embedded in it, I swear. I can still go to the beach, dig in the sand, play in the water and make mud creations even with one hand. Don't ever let EDS stop you from going to the beach.

In the last week I have to put into practice living moment to moment at times, and I had to face a lot of scary, unwanted realities. Getting through those moments can be hard, and harder if you're avoiding a good cry. Pushing it all down works for a second, but it gets more intense and harder to escape from. Giving yourself a couple minutes to feel everything as it is, and be whatever it is you need to be isn't fun but necessary. It allows you to get some of it out, so your can get back up, and continue on your way to forging a trail that looks more do-able.

" Your enemies = your teachers
Your failures = your wisdom
Your mistakes = your lucky discoveries
Your conflicts = your growth opportunities
Your undesirable endings = your desirable beginnings
Your grapes of wrath = your raison detre
Your painful feelings = your proud proof that you're dealing with your feelings head on!"

(How to be Happy Dammit!)