I might just have my life back...

I haven't written much about Jerome (my J-tube) and being hooked up to a pump for a while now. I'm going to knock on wood and say that I've set a new record for myself. I haven't been near an ER for 1.5 months. How awesome is that?!

I'm hooked up to a Kangaroo-Joey pump for 9-18 hours everyday. I love my pump, it goes in a little back-pack and I can turn it up-side down and shake it without setting off any alarms. It's totally worth the huge price-tag. The picture makes it look big, but it's small, I promise.

It sounds like a pretty big range, but it all depends on what my body is doing that day. I need about 200-300mls/hr of fluids concoction (water, electrolyte mix and salt) to be able to function. Any less will make me crash and I get all dysautonomia-y, any more than that is too much for my body and I'll start refluxing and barfing. Yes, that's suppose to be physiologically impossible, but I have EDS and the sphincters that keep everything down are pretty much shot.

Since figuring this all out and keeping on top of it, I'm feeling so much better. I will even dare to say that I'm feeling good. We know that hydration and salt are key to living with dysautonomia, and with my pump I have it all the time. Before,when I'd have to go to the ER, I'd feel so much better after getting enough fluids and I'd be symptom-free for a couple of days. Now it's like having IV fluids all the time. The hardest part of actually getting fluids concoction in, is when I get up in the morning and need to be hooked up right away. The problem is because I'm not hooked up at night, I feel gross in the morning and have to wait until my body has had enough fluids concoction before I can function. If I wait around too long before I hook myself up, then I'll feel worse and go back to where I started before life with a pump, which was horrible.

I still have the odd days when I feel gross, but it's been rare and not nearly as intense. Now I have energy, and I don't have most of the symptoms. I still reflux, sometimes like crazy but it's not nearly as bad. I can get up and go through the day without needing to lay down and rest as much. I still get tired,but it's not like when it would take me 4 hours just to have a shower and get dressed. I'm starting to get hungry again, which is sounds so weird. I'll still go 24hrs without feeling the need to eat, but now I want to eat and am starting to enjoy food again. Before, I'd look at a plate of food and want to cry, the thought of eating repulsed me. Last week I went to my parents house and had two servings of dinner. I didn't notice until there were comments about how I was eating again, it was the most I'd had during a meal in about a year. I don't really have the adrenaline rushes and insomnia until 5am anymore, I fall asleep around 1am and say asleep through the night. I'm not dizzy all the time anymore, and love the fact that I can lay down without feeling like the room is spinning. Dysphagia and choking aren't as bad either. I still choke on everything but it's less frequent and swallowing is a bit easier (when the hormones aren't crazy). I have replaced the brain-fog with an attention span, and can carry on a conversation and think again. The tachycardia, palpitations, chest-pains and low blood-pressure are still kicking around but like everything else, not nearly as bad. I can get up from sitting with only feeling a bit dizzy and seeing stars, instead of blacking out and having the room spin. I essentially don't feel like a zombie anymore and it's wonderful.

I have even dared to do my own little experiments on myself. Looking back, I've had all the dysautonomia symptoms going on for years, most of it starting when EDS started. Keeping in mind it was on a much smaller scale and didn't affect me nearly as bad. I took myself off the supplements that were helping with the insomnia, ADHD and anxiety. Interestingly enough, I've been feeling fine without them. Part of me is wondering if I've had dysautonomia all along, with it being just a lot more mild, and presenting as something else. I'm still taking all my other supplements but the whole thing is pretty amazing if you ask me.

Everyone keeps telling me how much better I'm looking, so I know it's not just me. The best is when people tell me that I've got the spark back in my eyes and I seem so much happier. I am a lot happier, I don't feel like a zombie anymore...For the first time in about 10 months I'm starting to live again. My existence isn't from my bed, and I can kind of do things like a normal person again. I'm still processing the whole thing, and have come to realize that I've pretty-much lost a year. When the dysautonomia mess started, my life stopped but the rest of the world didn't. Now that I know what I need, and what works I'm looking forward to playing catch-up and joining the rest of the world. I'm really hoping this summer will be spent outside instead of in bed.

I get a lot of flack for how I've chosen to live with EDS and dysautonomia, but it's the right choice for me. We all have to find our own way of living with this and do what works for us. Getting the j-tube, using natural and Chinese medicine lets me be able to live my best possible life. I think the fact that I'm not on any medication at all and thriving (considering) with these conditions is a testament to how vital this approach is for me.

What goes into my fluids concoction?
- Ground up sea-salt
- Natural electrolyte mix http://www.eletewater.com/
- Just plain tap water

I also eat potato chips every day. They're gluten-free, contains carbs and salt, which is key.

It's nice to finally have something work out when everything else has been hell. Just recently, I put myself out to the universe and started asking for help. Since then, there have been some really incredible, humbling things taking place and I'm so thankful for it all. There are no words to describe it...

One cool thing that happened, is a friend bought me a package for 5 massage & hydrotherapy treatments. She knows that floating in warm water is the best thing for pain relief and one of my favourite things. The heat helps relax my muscles and sore joints, and floating means there's no gravity....when there's no gravity, I don't dislocate or sublux anything and my body stays together. When I'm floating and am not in any pain, I completely relax, and think about nothing. It's essentially like meditation for me. I have other bendy friends who speak the same about hot-tubs and floating...We're going to start our own religion where all you have to do is float. Mmmmmmm

Want to float too? Anyone can join our religion...

I was so relaxed and off in Nakki-land, I had no idea anyone took this until I saw it posted on Facebook.

If only I could find a way to avoid tape-rash all together. One day....

Here are some video's I made for another project and to raise more EDS and dysautonomia awareness/understanding.






Thank you for reading my crazy rants and other nonsense. I hope it offers encouragement to find what works for you, and gives hope that you'll find your way through all of this. I know I have, and I never thought it would be possible. Keep your chin up, and keep moving forward.

"Creativity is inventing, experimenting, growing, taking risks, breaking rules, making mistakes and having fun"
(Mary Lou Cook)

When you're neglected by a gastroenterologist...

I'm opening up a can of proverbial whoop-ass and writing this for the world to see. This is what happens as a result of being neglected too many times by a gastroenterologist (who will remain nameless right now). Let's' also not forget his unprofessional remarks.

I know that doctor's offices, especially specialists' offices and ER's are very busy places. I also know that I have really rare and pretty much un-heard of conditions. I'm all of my doctors first patient with Ehlers Danlos Syndrome and Dysautonomia. Because of the awesomeness of these two invisible conditions, they're really hard to diagnose and treat. I get that, all of it.

What I don't understand is how these people can just brush off patients and their symptoms, even when the patient provides information (also knows more about it than the doctors) and evidence that things aren't right.

Sadly I'm used to fighting with doctors. It has only happened a few times where I actually get listened to and not immediately dismissed. The only two people who've listened without a fight, and who are doing an incredible job advocating for me are: Awesome GP and the inpatient nutritionist at Mt.Sinai.

If you've been reading, I guess it's not news that I recently spent 6 days inpatient because of dysautonomia and J-tube issues. My gastroenterologist knew what was going on but didn't do anything. Awesome GP wanted me admitted to get it all sorted but when I went to the ER with a letter from him, I was sent home and spent the weekend getting worse. That case of neglect ended with me back in the ER on the Monday where I ended up being admitted after crashing pretty bad. You can read about it here: http://flexabilityandcreativity.blogspot.com/2011/01/day-mtsinai-was-joke-still-feeling-ass.html

After getting everything sorted part of my discharge plan was to follow-up with my gastroenterologist. I called and asked to book an appointment, where I was told that he felt no need to see me. I called back the following week and explained that it was part of my discharge plan, and that I also needed to get my tube changed and needed the go-ahead from him. The receptionist called back and said that he still didn't feel the need to see me, and that my tube was in the right place and didn't need to be changed.

It amazes me how he could use his x-ray vision and know this without even looking at me. No wonder he's doctor, he's got super-powers! Funny enough, every single doctor, tech and nurse I saw since getting my J-tube put in 3 months ago, said that it should get changed every 3ish months. A lot of people have looked at my tube since I've had 3 ER visits, a bunch of tests and a million appointments in that time. They all said the same thing....get it changed every 3ish months. This gastroenterologist of mine thinks that the tube can stay in for 5-6years. So, that's why he wouldn't put the papers through so I could get it changed.

Let's not forget that I have Ehlers Danlos and am at a risk for a lot of things. Part of my condition includes poor wound healing, issues with bleeding and anything else crazy. I am well aware of the fact that I'm his first EDS patient with a tube. I also know my shit about this condition and have had to advocate for myself every step of the way for the last 13 years.

Below is some writing from past posts about the difficulties and neglect I've encountered with this doctor.

This is when I finally convinced him that a tube would be a good idea
"His first response was this: "Well putting a g-tube in you will be difficult because you're fat, to put it nicely". Then I laughed in his face, and listed all of the reasons of why it would be a good idea. I think he got served a piece of humble pie because he agreed to not only do a g-tube, but that a g-j tube would be a better option (because of aspiration and autonomic issues). I think he realized he was not god, when he also said "This is a very strange request, but you have Ehlers Danlos, so it will be a first for me and is very interesting".

He was ready to book the procedure which is normally done in radiology, until I reminded him that people with EDS do not benefit at all from local anesthetics. He forgot (neglected to read over his notes) that when I had the gastroscophy/biopsy done I had to be sedated after 4 attempts with a local anesthetic. So now he's on a wild-goose chase to find a way to get it done under general anesthesia (which is my best friend), with someone who is comfortable dealing with EDS and all of the complexities that come with it.

He's still not convinced that I need to get the gastroscophy done every 6mts despite that it was requested from my geneticist at my last follow-up, and I have a family history of esophageal cancer..."

This is from when we were getting the pre-op paper work done, which made things a little complicated because of EDS.
"I will also be honest and say I'm a little terrified. The GI specialist doesn't really seem to get the seriousness of EDS and the issues that come with it. I feel like he completely discounts the fact that autonomic disorders are secondary to EDS, which is extremely frustrating. When I went to fill out the pre-op paperwork, he had already completed some of it. Apparently, I'm not at risk for having bleeding, cardio. and neuro. issues from the surgery. Hahahaha. That all had to get fixed. I made an info. pack for the anesthesiologist, so I'm hoping they do some reading, and keep a good eye on me. They're using general anesthesia, since locals don't work on this girl and I'd rather be completely knocked out and have the best nap of my life, than to feel everything and loose more trust in the medical community. I guess one of the things that really makes me nervous is potentially waking up with a subluxed neck (I just got over my last one) or more TMJ issues which is very probable from intubation. Barf!"

Apparently the paperwork didn't go through because I wasn't on any food restrictions, and it didn't get done under general anesthesia
"I was still being offered food today, even 10 minutes before the procedure. I didn't end up getting it done with general anesthesia, but instead with sedation and some locals. The techs putting in the tube were nothing but awesome. They read the info I gave them and were more than willing to do what made me comfortable. I could still feel a lot of it, as the locals don't really work on this girl, no matter what. I will say that having your stomach and jejunum poked and cut through feels really gross"

This was from the post-op follow-up that I had to fight for. He didn't feel the need to see me, despite it being in my discharge plans.
"I guess I'll start with the Jerome (gj-tube) drama.
Well it got infected, but I got antibiotics straight away and it's cleared up. The GI specialists said it was because A) I am "a little bit chubby". Hey, it's better then last time when I was "fat". What an ass. B) I have EDS. I say we're professional slow-wound healers."

Today I went to see Awesome GP because gastroenterologist won't take me. Last night I had blood (not a lot) coming from my tube and it was sore. It wasn't because of any abrasions, it was coming from the inside where it's still draining. I have an insanely high pain tolerance, when something hurts it means something is wrong. I spent the night on my back (which hurt the rest of my body) and it was the same this morning. Still bloody and sore, gross I know. Awesome GP put me on antibiotics and sent off the paperwork for another gastroenterologist and to get a tube change at a different hospital. I called this hospital, and they need paperwork from my gastroenterologist. He won't see me, how the hell am I suppose to get the paperwork, never mind a tube change. Are we suppose to forget that with Ehlers Danlos there are issues with tissue break-down, organ ruptures and bleeding? I'm also suppose to be able to trust these people? Yeah right....

I'm hoping this post will yield some results in terms of finally being able to get the appropriate care I need, and that others won't have to do the same. What if I were a patient who didn't advocate for myself? I would have ended up dead, no joke. If need be, I will start using the real names of hospitals, doctors and people who have been neglecting their duties as "medical professionals". Maybe the media would be interested in this...

My point in all of this long drawn out rant, is that everyone deserves a healthy life. This is the only way we can, so this is what we have to do. We don't expect anyone to know everything, but we really hope, you would be open to learning and being awesome.

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