Sunday, May 29, 2011

When you can't tell if it's a side-effect, or a dysautonomia crash and it scares the shit out of you.

As you can tell, it's been a blast and I've had the time of my life.

With the Zofran I only ended up with all the side effects, and no relief.
It messed up my skin and turned me into a bleeder, everything seemed so fragile.
Jerome 2.0 had finally healed and the burn on my butt was coming along. I started the Zofran, and my skin was not happy. I ended up with friction rashes from my clothes, heat rash, peeling skin on my hands, scrapes in my mouth and on my tongue from food that was "sharp", and Jerome opened up again. My skin also didn't want to tolerate IV's for more than a day at a time. There was other stuff going as well, but I don't want to get into it. Now, my skin is healing from all of it. When I was at Chateau Sinai in January, on the 2nd day my skin from the entire bottom of both feet peeled off in the shower, gross I know. It seems as though my skin hates GI meds.

Anyway, my quality of life sucked, and with symptoms being gross in a normal person; with ESD everything is so much worse on top of what we already have to deal with. For example the rate of healing is 6x's slower, and the rate of infection is 6x's higher. No to mention an incredibly low success rate with pharmaceuticals, and just about everything else. So on day 4, I decided to scrap the Zophran plan. We do have a couple other drugs that can be tried, but their side effects are more brutal. I've already tried the top 3 without success, and pretty much everything in between. This is the girl who's been taking stuff for reflux since age 11, slowly knocking them off of the list because they stop working.

For now I'm still feeling the same, and trying not to get discouraged...but am getting a little bit of respite here and there. The rest of my body is okay, my joints aren't happy but it's hurting Jerome to put them all back and I really want it to heal. I guess you should also know that my body is tolerating alcohol much better than food and fluids. I have NO idea why. I said "eff it" and went to a bendy party where vodka was my friend. I figured since I wasn't feeling any better, I might as well make it worth it so J had a few drinks. To think of it, I've never refluxed on it. Hmmmmm.

Then I tried the Scopolamine patch . It was a complete disaster, I only had the side-effects and no relief. Surprise!!!! It ended up being really scary because I thought I was having a bad dysautonomia crash, and was very close to calling an ambulance. I've never had to do that, and have never felt that shitty before.

Drowsiness, confusion and disorientation hit me pretty hard. I felt like I was in a constant state of coming out of sleep paralysis and really had to fight to stay conscious and oriented. I have sleep paralysis all the time, but I couldn't come out of it no matter what I did. I was also really shaky and weak.

Dry mouth was horrible, no matter what I drank, how much fluids I put through J, or how many tic-tacs, lollipops I consumed, I had insane pasties. It also made my secretions really thick and I was constantly choking on it. It wasn't just dry mouth, it went all the way down my throat and esophagus. I thought I had food stuck in there and nothing made it go away.

Blurred vision and dilated pupils were interesting. I woke up, and couldn't see in front of me. Everything was so blurry, I was seeing double and my depth perception sucked. I was really light sensitive and had a hard time looking at anything. The dark was my best friend. I had the brilliant idea to decorate my new neck brace with Sharpie markers, it looks horrible hahaha.

I was retaining fluids like it was nobody's business. I think I finally had to pee after 2L of fluids concoction...yeah a bladder isn't suppose to hold that much but I'm stretchable...

The spins and blood-pressure drops were insane. I had a really hard time going from laying to sitting, or sitting to standing. As soon as I did any of that my BP would drop, I'd black-out, sometimes fall, and was really dizzy. Then the tachycardia would start and I'd get really bad pain in my brain as my body was trying to get the blood back. Then I ended up with a killer migraine. I crawled everywhere I went, because getting up was so difficult.

All of those were side effects, but they present exactly like a dysautonomia crash and some of them like a neuro issue. Since EDSers are prone to blood-vessel rupture and all kinds of crazy neuro things, I didn't know what to think and was scared shit-less. When you've seen your bendy/dysautonomia friends go into complete autonomic failure ending up on life-support, or dying from ruptures, it doesn't take much to shake you up. I had 3 days of that fun stuff, and I never want to do it again. It's a good thing I woke up today feeling better, otherwise I would have gone to the ER.

As for the GI stuff, it's still all the same. Constant reflux, upset stomach and if I'm lucky I can get food to stay down. So it's looking like it's back to the drawing board, however I think taking a break from the pharmaceuticals would be a good idea right now. We've pretty much tried everything, and I'm tired of feeling extra-gross, it doesn't do anything for my quality of life. How strange is it that I actually get excited for surgery, that fundo can't come soon enough! First we have to find someone to do it, haha.

"Jerome just probably needs some more vodka."
(Bendy friend Tiffany)

Wednesday, May 25, 2011

It's a EDS Zebra Sleep-Over Party!

Once upon a time, princesses from the Ontario EDS posse got together for a sleep-over party. It was their girls night in, since going to the ball was not something they could do anymore. That's okay, because princesses can party like it's nobody's business in their own EDSy way.

Our wonderful hostess princess Chuckles decorated the ballroom with flowers, balloons, a whole bunch of disco-balls and accessories for everyone. It was also the night of the supposed "rapture", so the princesses wanted to make sure their fate was sealed.

She also made grab-bags filled with the perfect items for a zebra princesses spa.

The princesses were served the most delectable gluten-free cupcakes, they all had at least three.

Candy was also on the menu, commonly known as princess fuel.

There was talk of bacon flavored cupcakes and lip-gloss, all essential in a princesses day.

In a few weeks, these princesses will be going to Nakki's orthotist for a consult and casting to get some glass-slippers for Chuckles. Everyone else in the kingdom calls them AFO's. They aware that princess Nakki knows her stuff and won't take any crap. Hopefully, it will make finding those slippers much easier for princess Chuckles. Otherwise, they're going to have to deal with the wrath of princess Nakki and it's not pretty !!!

In the land of Baltimore last summer, the princesses were introduced to the Apples to Apples game. It was very popular among the other zebra royalty.

Guess which princess came out of nowhere and beat everyone. She's really a ninja in disguise.

Tiara's are a MUST at royal balls such as these.

The term "night out" is used loosely among these princesses. A night out to us, is a night out of bed and somewhere else besides the couch. (Read the label on the bottle)

Being a princess is hard, it takes some major dedication and team work to polish off all of those Jello-shots, there were a ton.

Princess Nakki met Princess Smiles last year after they both had appointments at the royal hospital. These princesses don't need much of anything in order to be comfortable, just a floor. They have laid down pretty much everywhere, including the time they went to see the Dalai Lama. When they were in the land of Baltimore for the EDNF conference, the princesses we so excited to see lots of other bendy friends laying on the floor. Cause' that's how we roll!

Bendy princesses firmly believe that hysterical laughter can fix anything, or at least make pain more manageable.

Then it was time to play a game called: Is This Normal?!
Princesses Nakki and Chuckles are definitely royalty as their feet were starting to turn a nice shade of purple. Blood pooling is awesome!!

Some of us lived off of cupcakes the entire time. This princess couldn't get enough of the strawberry icing, and thought it would be even better with bacon.

She wanted to fill the cupcake bling with bacon grease so it could be lip-gloss.

No longer a princess, but instead the Queen of Bacon!!

I constantly asked how I manage to stay positive and laugh at pretty much everything, when stuck in a body that is falling apart. Bendy friends are instrumental in keeping each other from going insane and giving up hope. There are always bendy friends to talk to at stupid o'clock in the morning because none of us really sleep. Going to bendy posse events, has got to be one of the best things we can do for ourselves. We don't have to try to pretend everything is sunshine and lollipops,we don't have to shield people from some of the really ugly stuff EDS can do, and we don't have to stand or sit in a chair. Being with bendy friends is the one time where we feel completely understood and are accepted as a whole package without any judgment,comments or criticism of how we're choosing to live. Bendy friends need each other because otherwise, we'd be totally lost and very grumpy. Not to mention being in the hospital a lot more. We essentially rely on each other to get info and advise so we can advocate, when nobody else knows what to do with us.

I think everyone in the Ontario bendy posse would want the same for other bendy's out there. Please go out and start your own bendy posse and get together regularly. Having support like this is priceless. It's like the conferences but smaller, a lot less overwhelming and more fun. Alcohol is also much more affordable, since it doesn't need to be purchased from the posh bar at the hotel. I don't think the posh bar serves Jello-shots either...

If this post doesn't make sense right now, it's because dysautonomia wanted in on the party and I'm super brian-foggy.

"We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual and call it love."
(Dr. Seuss)

Tuesday, May 17, 2011

Awesome GP does it again!!

I went to see Awesome GP yesterday to see what he could do,so I could get help with this GI stuff ASAP.

I won't bore you with details, but let's just say I've got it good!!!

Awesome GP didn't like the idea of me be being suck in the hospital getting fluids and things while I waited to get the fundo surgery. So he set up for home-care to come and hook me up. I'm at home with fluids and Zofran while he finds a young, open-minded surgeon who will take on me and my crazy body.

Another pump?! There's no way I'm going to use this gigantic dinosaur. I'm sure it's just as loud and obnoxious as the hospital pumps. I'm kicking it old school and using gravity! Then I can take my fluids anywhere in the house, and even hang the bags from a hammock. The poor delivery man was so confused when I wouldn't take the IV pole either.

Some needles, tubing, canula's, Zofran and fluids! I'm going to look like such a junkie after this...

I just finished packing up at box of supplies I don't need, and then got another one. Anyone want gauze? I have about 4yrs worth of it.

I got an "I'm proud of you" from my nurse today. I guess they're not used to having patients who are independent and can advocate like it's nobody's business. I didn't have to fight for anything today, after we cleared up the fact that I refuse to use the pump and IV pole, and we're doing this MY way.

The bendy posse is getting together again this weekend, so there will most definitely be a very entertaining/messed up post with pictures to come.

I also want to thank all my bendy friends for their advise and support. I've decided to scrap the TPN but still push for the fundo surgery. There's no way we'd make it through without each-other. It was so nice to talk with a bendy friend who's also getting fluids & Zofran at home, and kicking it old-school with gravity. It's because we're awesome :)

Friday, May 13, 2011

The simple things are really the finer things

Well, I'm still feeling really gross but I'm also finding lots of enjoyment during these really long days. Sounds contradictory doesn't it ?

Guess what? It's not. Here's why:

I've found that getting sick as given me lots of opportunities to learn to enjoy the simple things in life. Like, bare-bones simple sometimes. I've always been someone who enjoyed those simple things, but only in small quantities. I would get bored, antsy then I'd feel powerless. In hindsight, I know exactly why that would happen. It was because I had to face some really hard things and eventually work through them. When I really started to regress over the last couple of years, I had to stop everything I loved. I was someone who was always on the move, and the faster I was going, the better. I didn't have time to be still and quiet, nor did I have any interest in it. To me it was like torture. As my symptoms got crazier, I eventually had no choice but to learn to be still and quiet.

That time was also the peak of the depression fun that we all find ourselves in when we realize that this is it. Life will always be this way. If we were lucky, there might be a few things that we could do again with lots of adaptation and most importantly caution. Our lives would be filled with countless evaluations throughout the day, for us to determine the impact of our every move and the consequences that would follow.

With a lot of work and perseverance, I finally learned how to be still and quiet. I distinctly remember the first time I actually chilled out. I was camping with the guys, after what had been a really bad past couple of months. It was a beautiful, quiet afternoon in the middle of no-where and I went to lay on a rock just beside the lake. I made a conscious effort to focus on breathing and relaxing. After about ten minutes I realized that I was chilling out!!! Then I yelled to the guys that were doing their own thing, "Hey guys, I just chilled out!!". I can't say I was relaxed after that, because holy crap...I chilled out. From then on, I knew it was possible and I wanted more.

Now a few years later, and with a lot of practice I can be still and quiet almost anytime. For me, habitually taking my mind off of life and EDS for little chunks of time each day has allowed me to retain the little sanity I have left. Maybe I wouldn't say retain, because as life gets crazier I'm more at relaxed and at peace than ever before. So we'll say I'm taking back my sanity and perfecting it. It's also the one thing that helps with pain control when nothing else does. On those days when everything hurts so much that I find myself on the floor, I turn off my brain and focus on breathing. Nothing else. It allows me to get from one moment to the next and to be completely relaxed so I can ride the whole thing out. I could be yelling at the top of my lungs about pain, but for me it's counter-productive. Yelling makes for more muscle tightness, it's loud and makes me,and anyone else around panic. No thanks...

Anyway, this whole being quiet thing has given me so many opportunities to experience the world in a different way. After perfecting this skill over the last year of being sick in bed, I am finally putting it into real practice. I can now experience things simply, and there's nothing like it.

I've been reading my books for school in a hammock in the sun. I'm surrounded by flowers that smell wonderful, and lots of greenery. I've been laying on the grass, looking up at the sky thinking about nothing, sweet nothing. On windy days I'll go for walks and spread my arms out so I can feel the wind on my whole body. Sometimes after work I'll walk down to the beach and hang out there for a while. I'll play in the sand, wade in the water and soak up the sun. Tonight it started raining and no, I didn't go inside. Instead, I took off my sandals and AFOs' and got to re-experience the feeling of wet leaves and grass under my feet. Then I went back to the hammock and just lay in the rain. When I'm outside doing anything, that's when I truly feel grounded and connected. Most of the time the thoughts of EDS and what it's doing to me, melt away and I get some much needed respite.

Since feeling a lot better (not right now, but on the whole), I've been able to participate in life again. I've been able to make plans and keep them for the most part. It doesn't mean that I'm doing anything crazy, but I'm really enjoying the time with my friends doing nothing in particular. Just hanging out, and enjoying each others company. Now that it's been getting warmer, we've been spending more time outside and it's been awesome. Everyone always asks what I've been up to or busy with.Other than paperwork and EDS fun stuff, I just been enjoying life. Most importantly the simple things,that are really the finer things in life, and that's what makes me happy.

This week two of our bendy's friends have gone to meet their maker. Zak and Kim won't ever get to enjoy the simple things anymore. They left this earth to soon, and none of us know when it will be our time (whatever you believe in).If you're not already doing it, make it a habit to find the simple and fine things in life, and enjoy them. It might take a lot of practice, but it's totally worth it. If I can weather the storms that life unleashes, so can anyone. You may also develop a bit of an "I don't care" attitude, and that's awesome. Because at the end of the day, does it really matter if we broke a glass, or ran out of peanut-butter or forgot to take out the garbage? Probably not... Tomorrow is a new day, and it's never a day to be wasted.

I found a backpack that is perfect for the Joey-pump, and so much better than the one that is made for the pump. It's also about $60 cheaper, and looks far more cool. I'm a bit of a MEC whore, they always have what I'm looking for and it lasts forever.

And..............I found some sandals to cover my AFO's. From May until mid-September the man shoes are gone. It only took 3 attempts to find these and I love the fact that they're orange.

Some of our bendy posse got together. It was a beautiful sunny day, where we spent it mostly outside. First we stopped for lunch where we started with some drinks. Jerome had vodka shot, and an audience. I guess people aren't used to seeing a girl do shots through a feeding tube. They wanted me to do it again, because they thought the whole thing was hilarious, so I happily complied. Insta-drunk again, don't mind if I do.

Then we stopped for some desserts in the sun.

Later we went on our way for more food. We stuffed ourselves silly and had a fantastic time.

This is where I'm spending a lot of my time. I don't know how I ever lived without a hammock. Jerome was being fed with gravity, I just clipped the fluids bag on the top of the hammock and kicked it old school. Nothing better than fluids, brain-food and being outside. Yes, PenAgain makes hi-lighters.

This is what I see when I look up, no boring ceiling to stare at.

Nothing better than unwinding at the beach after work.

Happiest feet on the face of the planet.

Last year's birthday was spent in bed with a subluxed neck and the beginning of life with dysautonomia. It was also supposed to be my last day at the job I loved thanks to EDS. I missed both, but luckily this year I got a re-do! A b-day celebration with some of my work friends at an Ethiopian restaurant. I'm a lucky girl.

"Celebrate we will, because life is short but sweet for certain"
(Dave Matthews)

Thursday, May 12, 2011

Possible GI relapse fun stuff

Let me start by saying that I've managed to avoid an ER for 4months and 1 day!!! Considering I used to be there all the time, this is awesome.

What's not so awesome is my silly GI system.
I've been refluxing like it's nobody's business for the last week. I haven't been getting hungry and am back to easily going 24hrs without food. If I do eat, I feel nauseous and gross with non-stop reflux. The reflux also happens on an empty stomach, it doesn't seem to matter what I'm putting in my body. The same can be said for putting anything through Jerome including my fluids concoction that I NEED to be on. This is exactly what happened before, except I wasn't using the Joey-pump. None of the natural stuff seems to be working either :(

The dysautonomia has been a little strange for the past two weeks as well. I've had all the symptoms going on, but thankfully not all at once. Last week it mostly low BP, dizziness, brain-fog and tachycardia. This week it's mostly sleep and GI stuff.

Thanks to EDS this makes things very complicated. Here we go....

I need my fluids concoction to essentially survive, but I reflux it which means that I sometimes choke on whatever is coming up. That's not cool when you have dysphagia and a history of aspiration pneumonias (5 of 'em). It also means whatever I'm putting through J isn't being absorbed properly which messes up the dysautonomia. It's also not like I can be on the fluids at a slow rate for even longer during the day,because I blow through it so fast and that would make me even more sick. We learned that at Chateau Sinai when I was getting worse because they were brilliant enough to not listen, and thought 100mls/hr of fluids was enough to sustain me when I need 300mls/hr. On day 4 they finally listened, and waddaya know...things got better.

I definitely know this isn't hormone related unless I'm producing relaxin when I shouldn't be. Othersiwse, I'm out of theories. We do know that the sphincters that keep everything down are shot, and no medication has ever worked.

So here's what I'm thinking...
Ideally, I'd be admitted again and thrown on IV fluids and TPN Then I'd be hydrated and would avoid wasting away while we give my GI system a rest and check it out. Let's not say it's ideal, but rather practical. Then I'm also thinking of fighting to get a Nissen Fundoplication
Having to go on TPN while inpatient is common among the bendy community. At least I'd be normal that way.

We've done everything else including a J-tube to avoid the reflux...Getting the fundoplication would mean I won't reflux and aspirate on whatever is coming up, decrease the risks of esophageal cancer and food will stay down. I also wouldn't be able to vomit. Then, I could get just a plain g-tube put in which would make life a lot easier because I won't need day surgery every time it needs to be replaced and I could do it myself at home. The whole not being able to vomit isn't too bad, because I'd have the tube that would act as an exit. Yep, it's possible to barf through a tube. The other benefits include less exposure to radiation because it's less time in interventional radiology which has to be done anytime they do anything to a J-tube. I'm sure my insides are glowing from all those scans and fleuroscophies. I also will be able to avoid sedation a lot more. Don't get me wrong, I love the drugs but they're just not good.

The biggest bonus if I get the whole thing done with a g-tube, is that I can puree my food and put it in. I'm getting food allergy/intolerance testing done in June, so with whatever happens with that, my diet can be customized which makes a healthier me.

This is something I've brought up before, and they said no. However, we've pretty much run out of options and I'd like to go back to not feeling like complete ass. It was nice.

Waddaya think? Any feedback would be appreciated. Cause' I don't know what else to do.

Otherwise, my body seems to be co-operating and staying together relatively well.

p.s. Food is over-rated.

Friday, May 6, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunshine and flowers make any day better.

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

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

Tuesday, May 3, 2011

The gong show that is EDS, and the exhaustion that comes with it

So life has been all about survival, with some fun thrown into the mix. As I'm only starting to process my last year, there have been some really hard pills to swallow. I have so many things I want to write about, but can't ever seem to get started. I was talking about this with one of my best friends who also happens to be a bendy. He got me started with a sentence, and I had to go from there. It went like this: I was thinking while I washed my face that... I will never get tired of the smell of my aloe cleanser, but I do get tired of the gong-show that is EDS.

This time last year, is when I got sick with Dysautonomia. Forget all the other fun that comes with EDS, from that day on my old life as I knew it was over. Last year, I subluxed my neck for the 2nd time and spent my birthday in bed. Funny enough, I've spent other birthdays in bed too. That day also happened to be my last day at one of my jobs that I had been working at forever. It was the job that I loved, and couldn't get enough of. Giving that up was really difficult. As the months went on and I got increasingly sick, I had to give up more. My time doing the things I loved, that were still left on the "Can do" list, was exchanged for time in bed, at appointments or in the hospital. Along with not being able to do the the things I loved anymore, I lost some of the ability to do things that so many of us take for granted, like eating and drinking safely. Don't even get me started on the implications that it had on my social life, I lost a lot of friends.

In the last year, we have also got it diagnosed and stabilized. I say "we" because I've got an incredible team of people who have worked really hard to keep me moving forward. I have had some amazing friends who have stuck it out with me, and I don't know where I'd be without them. They understand that being chronically sick can take it's toll on someone. Yet unconditionally, they've had my back. With that, came the biggest slice of humble pie I have ever gotten. I've gone from someone who was completely independent and "had it all", to someone who has "lost it all" and become dependent on everyone else. Having it all, and losing it all are subjective terms. After losing everything, and wallowing in my nothingness, I slowly started to realize that I really did have it all. I had shelter, food, friends,family, health-care and something I believed in.

I'm not saying this shit is easy, because it's not. Everyday is a battle. I fight hard to keep my symptoms under control, and to keep my body together. I'm constantly fighting to get funding, I fight to get my reading, studying and paper-writing done for school. And, let's not forget fighting with doctors and health-care providers. A lot of the time, all that fighting results in defeat. Everyday I feel like ass, with varying degrees. Some days I can't keep myself from laying on the floor puking from pain or Dysautonomia. Funding gets turned down for just about everything from a feeding pump to keep me alive, to schooling and housing. I have to spend an insane amount of time and energy advocating for myself so I can get the appropriate health-care that I need. When your diagnoses aren't cookie-cutter and are out of pretty much everyone's scope of practice, it's especially difficult to get someone to listen to you. This has been my gong-show for the past couple of weeks, pure insanity.

I'm exhausted. There's a huge part of me that doesn't want to fight anymore, I want a break. A big, fat, long, blissful break. But I can't take a break, and it's not a choice. I have to keep pushing through this crap, so I can do something other than survive. There is so much that I want to do and can still do, but I've got to fight for it. Oh, and I can't ever stop because it will be like this everyday forever. I know it's completely unrealistic to wish for even a day where I don't have to fight, but wouldn't it be nice? I'd also love for all the people who think living with EDS and Dysautonomia "isn't that bad" ,"not that hard" or "isn't painful" to spend 24 hours in this body. Today, I mostly wish that I'd get taken seriously even if I am a patient. Because I know my shit, and messing with me will be trouble, but right now I'm drained. I've also got about a 12inch stack of EDS related paperwork that needs to be done, hahaha being disabled is a blast sometimes!!

I'm signing off with something one of my bendy friends said last week, I thought it was brilliant. Thanks for reading my rant, it was so nice to get it off my chest.

"It's amazing how dramatic our lives are, considering we rarely leave the house"