Thursday, September 30, 2010

Three good things...

I hope this post will be really interactive. I'm curious where my blog readers are coming from, and would like everyone to put in their two cents. The last two weeks have been nothing but hard, exhausting and gross. What I find helps, is to focus on the positives in each day. There are always at least three good things that happen to us before we go to bed, and that in itself is a small victory in a horrible day.

My three good things for today:
1) Got out of the house to get some yummy food (that I hope can be eaten), scored some new pen/pencil grips, supplements and vitamins drink for plan "D" to stay out of the ER.

2) It's a beautiful day and everyone is out. It's nice to see so many smiling people enjoying the little things life has to offer.

3) Grey's is on tonight. One of my bendy friends is coming over to watch, and we're going to chow down on ice cream :)

What are your 3 things ?
Don't be a stranger....

"Life does not have to be perfect to be wonderful"
(Annette Funicello)

Wednesday, September 29, 2010

ER visit # 3 in 2 weeks, Holy annoying Batman!

Guess what I spent the afternoon doing?
Guess what they gave me?

I think today was a result of having a subluxed neck (slowly recovering) and dysautonomia issues at the same time, both are hard to bounce back from on their own, combined appears to be a recipe for disaster.

I thought after Friday's fiasco, that I was all sorted with some new natural liquid add-in electrolytes, and spending the entire weekend in bed. Nope.
I did improve and felt like I was on my way to feeling human again, but when I woke up this morning after sleeping 10hrs, I felt like death.

Yesterday I was able to hold down a meal's worth of food and about 2.5L of liquids.
This morning, not even the electrolytes would stay down, my heart was a little nutso any time I changed positions, dizzy, sweaty, on and on...dysautonomia.

Got 1L of fluids and 50mg of Gravol(IV)
Blood work came back normal (surprise!!!, they never believe me that it's dysautonomia and not some crazy bacteria)

Was a pretty successful trip, didn't have to fight with stupid dr's, didn't need to chew up any gross meds, scored a bed right away and.....I got to take out my own IV, it made my week :)

I got the usual "Well since you know more about this than I do, you know when you need to come back for fluids..." and was discharged.

Funny enough this morning, the GI specialist called to say that they've bumped up the gj-tube surgery (no date yet)...I'll be calling them again to see if they can move it up sooner. Just think...I can push fluids through my own tube and avoid the ER all together.

Dysautonomia has slammed the EDS community this past month. Almost everyone I know, in person and online has been in the hospital or ER because of it. I was on facebook chat this morn. with one of my very close bendy friends who's stuck in the cardiac ward of John Hopkins with POTS. They can't figure out what to do with her :( If it weren't for social networking, and us being pro-active we'd probably all be dead by now. Thank you Facebook

For all by bendy friends who's asses are being kicked with POTS and whatever else, Just keep swimming and fight like hell.

Monday, September 27, 2010

2 ER visits and 1 subluxed neck in 10 days, I'm on a roll!

EDS has been kicking my ass, so in the spirit of feeling like a million dollars:
This will be another edition of copy+paste e-mail that was sent to my awesome natural doctors.

As a heads up, this e-mail isn't filled with sunshine and lollipops...instead sarcasm, which is sometimes even better.

So in the last 10 days I've managed to sublux my neck and end up in the ER twice. I'm on a roll.

Yes, you read it right...I went to the ER again on Friday aft.
Despite trying pretty much everything, the killer migraine from my subluxed neck had gotten a lot worse by day 4 and I was pretty much incapacitated.
I was attempting to get ready to go into work for 3hrs, and didn't make it that far. The dysautonomia started acting up like last time, except my HR would go crazy any time I changed positions. It took me 4 hours to grab a shower and get dressed...I kept having to lay down and take breaks. It was like having the worst hangover of my life x's 10.

Before I decided to go, I talked to a few EDS friends to make sure I wasn't being a hypochondriac about it and was glad to know that I was pretty sane. Only one bendy friend said she wouldn't go, but then when I re-phrased the question, and asked her if she'd go if she were living in Canada where she wouldn't have to pay $15,000...she told me to go. Thank you Canadian health-care.

I went in with my last ER report and some of the dysautonomia info from the EDNF conference...They got me started on fluids right away, and some other IV drugs that were suppose to help with pain and messed up stomach. I asked for the IV to be put in my hand so I could move the rest of my body to avoid dislocations, and the nurse put it in my wrist. Hahaha my wrist started dislocating after 15 min, and I couldn't put it back in because of the line. Awesome. They were also out of beds, and didn't really understand no matter how I explained it, that sitting is the worst thing I could do for myself, and it would affect my entire body. They thought since my neck was supported with my brace that I was fine...So I spent almost the entire 6hrs in a chair and being moved from place to place. I wasn't allowed to lay on the floor either :( The pain meds didn't really do anything, and all that sitting made it worse. My super-powers were getting low and it got to a point where I ended up crying because everything hurt so much. This girl doesn't cry over pain, and hasn't since age 6.

My ECG came back normal, but I think it's because they had me laying down for about 15min before they did it. Right after I got up, my heart went crazy again and anytime I changed positions after that. I let them know but who was I kidding, I was just a patient.

The dr. was a bit of an ass. I'll give him 50 points for knowing the basics of EDS, but other than that he was useless and wouldn't listen to me. He didn't know anything about autonomic disorders esp. with EDS, and wouldn't let me explain, or read any of the info I brought because he had a god complex. He then tried to refer me to a rhumeatologist after I told him they would be useless to me and that I've gone the natural medicine route.He thought I needed x-rays of my neck, after I told him they'd come back normal, just like the millions of other x-rays, and scans I've had. Guess what? They came back normal, surprise!!! He said there wasn't really anything he could do, didn't know what to do, and sent me on my way when the fluids were finished. He did say that the gj-tube was a good idea and would help a lot.

So.......I ended up leaving in worse shape than when I went in....awesome.
As far as meds, I know they gave me Gravol (IV) and Advil (in a yummy pill that needed to be chewed and swallowed).
I have no idea what the other two IV meds were, I can't read the dr's writing on the report. They were kind of useless anyway.

2 days later, and I still don't want anything to do with food, I'm not hungry at all, but am forcing myself to eat. Never, thought I'd say that...
My neck is still crunchy, feels unstable and I'm on day 6 of migraines (which is finally starting to feel a bit better).
That awesome new sleep pattern that we just got started has been thrown out the window. I've been wide awake at 4am for the last two nights. Gotta get back on it...

The one benefit of that epic failure of an ER visit, is that I'm going to use it as ammo. to get the gj-tube surgery moved up asap. At least when it's done, getting fluids, electrolytes and food in me shouldn't be a problem, and the ER visits will hopefully be non-existent.

I'm not sure if it's the weather change, but EDS and dysautonomia has been horrible to a lot of my bendy friends lately. There needs to be a way to do body day...

That was written on yesterday afternoon. As of now, I still have the migraine/crunchy/unstable neck and am still "POTSy". Who need to run the track, when you can just stand up and get your heart pumping like mad that way. Running is over-rated.

"To be kind, honest and have positive thoughts; to forgive those who harm us and to treat everyone as a friend; to help those who are suffering and to never consider ourselves superior to anyone else; even if the advise seems rather simplistic, make the effort of seeing wether by following this you can find greater happiness."
(Dali Lama)

Friday, September 24, 2010

Trust n' stuff...

I don't know about the rest of you, but this is something I'm having a lot of trouble with. Like a lot.

Sounds so scholarly and academic doesn't it?

Not only have I developed a strong ability to bottle things up, but with it comes the ability to trust no one. Yeah, I make them sound like some very cool super-powers but they're clearly not. In fact, it's the opposite and it really needs to be worked on. The reality of it is, I'm the only one who can change that. Anyone could tell me until they're blue in the face that I can trust them, and I still won't. Not at least until I let down my guard, forget the past, and just do it. Out of all the people I know, there are only a handful of people who I can feel comfortable enough with to say what's really on my mind, and know that I won't regret it, or get stung.

I feel like the people I should be able to trust the most, are the ones that I trust the least. I really don't like it when I say something, and it gets misconstrued then assumptions are made. When I say "I wouldn't say it if I didn't mean it", or "I say what I mean, and I mean what I say", I don't think people trust in me enough to actually believe it. I'd like to think that when I say something, it's pretty direct and I'm always more than happy to elaborate if necessary.

What drives me absolutely insane, is when people assume. Argh! There's nothing worse. Just think, if we all spoke openly and honestly, things would sting a little bit. However, the sting would hurt a lot less than if we were to shove it all under a doormat and go along as if nothing had happened. Assuming doesn't get us anywhere. We can't expect someone to know something without telling them, and they cant' expect us to feel or think something unless we say it. Even if you have twin-powers.

I strongly believe, it is up to us create our own paths in life, and find our own way. Nothing can make us happy besides ourselves. It's a lot of really hard work to be able to take the cork out of that proverbial bottle and let whatever is inside flow. Yes it's scary and it hurts that's why we bottled it in the first place. Just think of it as some kind of wine. We put it on a shelf to age and with age, it gets stronger. That's how all the bottled stuff we didn't want to deal with works, except it gets stronger in terms of being painful and scary. Now just think that whatever is in our bottles is carbonated and they get shaken up....We all know what happens....The pressure builds, and builds. When our bottles are opened, even just a little bit, it's a mess of epic proportions.

I feel like each time I put some trust into someone and they do something that causes me to loose trust in them, it's a few shakes in that carbonated bottle. At this point my bottle has really been shaken up. Picture a pop bottle on a trampoline with about 10 people jumping on it...That's a lot of shakes, big shakes.

I know that there are a few people who can start turning the cap on the bottle and release all that pressure. I can feel the gasses release (not literally) and the painful, scary stuff starts to surface...I immediately put the cap back on, and turn it tight. I know it's an opportunity for me to trust someone, but it doesn't feel safe, I feel vulnerable and end up hyper-vigilant. Definitely not the most productive thing.

I also try not to let negative things people say, get to me. Most of the time I like to think it rolls off my back, but nope...I put it in the bottle, the one that's been shaken. I guess it's because I speak with honesty and truly mean what I say, that I expect everyone to do the same. Why would we say something if we didn't mean it? So when it comes down to it for me, if they've said something hurtful, it's not that they didn't mean it, they meant it. Now the confusing thing is wether they meant it in a loving, honest, wholehearted way, or if they meant it out of spite, anger or whatever else they may be feeling. That, I can't tell, but it stings none the less.

I'd love to be able to open my bottle, and get the stale grape juice out, and put in something like rum, which is yummy and won't get gross. I hope you catch my drift. I know some day, I'll be able to trust again. But for now, I need to open those bottles bit by bit and learn to trust in myself that I can deal with whatever is inside those bottles. Can't say I'm looking forward to those crying headaches, but my heart will feel lighter, so I'm okay with that, Kind of. Maybe.

"No one can make you feel inferior without your consent"

(Elanor Rosevelt)

Thursday, September 16, 2010

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.

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)

Sunday, September 12, 2010

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."

Saturday, September 4, 2010

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.)