Oh, It's Been MUCH Too Long!

I feel absolutely terrible for waiting so long to write! I kept having more and more to write about over time, yet I just haven't been able to find the time, energy, or brainpower.

Even this is going to be pretty short, and possibly a bit scattered (I'm sorry... but my fatigue has been x10 lately and with that, my brain is foggier than ever). But I do have a lot to talk about, so I must at least briefly hit everything! Sorry to do this... it's very un-blogger-like of me, but I'm gonna have to do a list, because if I don't, it'll just be all over the place - I literally can't think straight with all the pain and fatigue!

So here are some updates/things I've been meaning to chat about....

• P90X arrived in the mail - started it and am officially 5(?) days in now? Gotta say, it's extremely hard (but not as hard as when I did PT all day, every day, for 4 weeks!) I'm taking it slow though, at my own pace, and just trying my best and taking a lot of breaks. I've had some joint dislocations and subluxations while doing it, but mostly I'm doing a really good job of not pushing past my limits. Can't wait to see results.
• I've been meaning to talk about Smart Water - I've been hearing a lot of people with dysautonomia talk about how drinking gatorade helps them a lot because of the added electrolytes. Well I tried that for a while, but didn't like how sugary Gatorade was - so I've started drinking Smart Water religiously. It has those added electrolytes and stuff, but it just tastes like plain water! I'll drink at least 33.8 oz. a day (usually more). And I've been upping my salt intake a lot more - and it's been great. I've been getting dizzy a lot less - and my blood pressure is actually coming up above 100! (top #)
• Last week I had a bit of a heart scare, the paramedics were called to my school and everything...went to the ER...they did an EKG, and even a CT of my chest with IV contrast, because the doctor was of course concerned about the possible aortic rupture that can happen with EDS. But it looked okay, they didn't really know what happened, so I'm gonna follow up with my cardiologist about that.
• Went to the asthma doctor again...who once again says I probably don't have asthma but he still doesn't know what it is, so we are going to do a 2 hour test where they try to trigger really bad lung symptoms and then run more tests. That should be fun. (Oh and MICHELLE - I brought up the sweat test and the doctor refused! Sorry! I tried)
• I got a new job! I'm sad to be leaving my old job at the preschool, but it'll be a really good opportunity working my new job at Exchange Press! http://www.childcareexchange.com/

Alright, I'm too tired to finish - remind me to write about the biggest thing tomorrow...too much to explain tonight. In short, I'll be having surgery on May 3rd - details tomorrow! And more life-related and less health-related stuff to come tomorrow as well.

So sorry for my foggy brain - goodnight y'all

<3

-Jessica

Politics, Church, P90X and More

Hey there! I've been quite busy lately - I was M.I.A. from school and work (and of course, blogging) for a lil' while, but I am back on my feet and have got some things to share!

So I appreciate everyone who contacted me either through comments, facebook, or email, suggesting what might be going on with my lungs - I've made a list of things to bring up to my doc! (Refer to last post if you don't know what I'm talking about) So here's a new question: does anyone have anything to say/any advice about ketamine infusions for pain? I am thinking of bringing that up to my doc as well. I've heard a little about it. Anything you have to say on the topic would be greatly appreciated!

So first order of business I thought I'd share - for my government class, I had to take an online test to see what political party I fit into (I got "Liberal Libertarian" - which makes no sense to me at all). The test was set up so that you had to select whether you agree or disagree with each statement. I was absolutely SHOCKED to see this one - ''People with serious inheritable disabilities should not be allowed to reproduce." WHAT??? I mean you can't seriously tell me that there are actually people who think this way??? Wow. I would love to have a little chitchat with them.

Similarly, a couple of weeks ago, a guy in one of my classes was ranting on about how we shouldn't have healthcare. Shouldn't. have. healthcare. AT ALL. He actually said, and I'm being serious here - He actually said that "there should be no doctors and no hospitals. Evolution kills off the weak, so only the strongest mate and produce offspring and continue our species. The sick and weak should be left to die, so that the human race only gets stronger over time. Healthcare is terrible, all it does is keep weaklings alive longer."

I am a fairly calm person, and in this situation I didn't say anything to him, (also because I was just so shocked at what he was saying) but later on, after more thought, I do wish I could have said "would you think the same thing if your mother was sick?"

Well. Onto happier things!

I saw this on Pinterest today and related to it so much, I just had to post:

I love that quote. Mostly because it perfectly describes the transformation I went through this year (I don't mean 2012, but this school year, I suppose - since Sept. 2011 and before).

If you looked at my attitude and my spirit over this time, you'd never believe that things have actually gotten harder for me over a year. You'd never believe that I'm in more pain. I'm more tired. I'm having more health issues than ever before.

You'd never know, because I've transformed my way of thinking [being]. I turned my can'ts into cans. I stopped saying "I can't be a nurse... that'll be too hard for me... it's too demanding of a job...I'm too weak...I'm too sick" and I started saying "I don't know what the future holds, but I'm as sure as hell gonna try my best". I am signed up to begin the LPN program at Lake Washington Technical College in the Fall. Before, I had given up on my dreams and let my health take over all my hope. But when I changed my attitude, I turned those dreams into plans. I'm going for it. I am done fearing the future. When you are sick, it gets really easy to give up, to fear "tomorrow", because you don't know what it'll bring - pain, fatigue, hospitalization, disability, death. But fearing tomorrow is no way for anybody to live.

Do as much as you can. Every day. Don't admit defeat before you've even put in your best effort. (And I'm not talking 100% - I mean double that. ;) at least!) Always make plans for your future, no matter how uncertain it may be. (You'll see it actually feels good, and makes your shaky future feel more certain). If things don't work out as planned, that's okay. Modify. But never let yourself be defeated. You have your disease. It does not have you. NEVER say can't. You can do ANYTHING you put your mind to.

- I really should end my rant there, on a cliche, before it gets too long! haha -

Speaking on putting my mind to things, a couple last notes! P90X is currently being shipped to me :) And I will be very excited to start it and share that journey with y'all! Will keep everyone updated on that. Also, I've joined a church! (Heh, if anyone cares? It's the Unitarian Universalist Church and I LOVE it so much.)

This is turning into a novel! So I shall go for now :)
Adios loveys. Stay strong <3
-Jessica

Meme!

Hey Y'all - Happy Sunday (: I hope everyone had a good weekend and that the work-week ahead will go by fast! Last week inched by so slowly, I was just waiting for the weekend to be able to rest - and then of course, my weekend ended up being so packed that I didn't get any relaxation time at all! *sigh* just waiting for next weekend now. Maybe then I can get some decent sleep in.

I'm starting to think I should start to use my CPAP regularly again...
Nahh!

So anyways, I have a bit of a treat for y'all :) I've seen these "how it really is" memes floating around lately, so I decided to make one for EDS. Let me know if you find it accurate for you - of course this is just how I see it - leave me some comments! Tell me if you like it! And feel free to re-post:

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So a couple more things on the agenda: (1) spreading the love for the video my friend made about EDS, and (2) my stupid lungs!

Firstly - I must give a shout out to a fellow teen EDSer, Alexandra Coleman, who made this Ehlers-Danlos Awareness video. She got some photos and quotes from teens with EDS. (one of the photos is me! :) heyy!) So, spread the love and such. Here that is:

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Alright, and lastly - I have a question for all you fellow EDSers who might have experience with lung problems! I've been having issues with my lungs for quite a while now and my docs haven't been able to figure out what's goin on. For a while they just labeled it as "asthma" because they didn't know what else to label it. But they seriously doubt that it's asthma, and I want some actual answers! They've been prescribing daily inhaled steroids that have been helping, (flovent to qvar, now to pulmicort)...but those are prescribed for all kinds of lung problems all the time, so that doesn't mean that it's asthma... yet the rescue inhaler they gave me (with albuterol in it) which is used just for asthma I believe, NEVER works, and I've still ended up in the hospital more than once, without it helping at all in an emergency.

So anyways - I'd like to know what's wrong with my lungs exactly (I mean I know it's because of the EDS but what exactly is this seperate condition called, because even the asthma specialist I went to doesn't think it's asthma?) and what have you done that has helped at all? I wanna breathe again!

Thanks loveys! We'll chat again soon :)

<3

The First Post.

   The first post when one starts their journey blogging can be a bit intimidating. I've been anxious to begin for over a week now, since my awkward initial "heyy I made a blog" post. (But everyone needs one of those to kick things off, right?) Since then, I've kept a list of things I've wanted to blog about, but haven't - and that list is getting rather long.

   Life got a little hectic, as it always does, but nevertheless I am finally sitting down tonight to write. For a while, I sat and pondered how I'd begin. The first post is huge. In the future, newcomers will look back at it to find out what a blog is all "about". Some bloggers would want to start off with their whole life story. Well, that's not how I'm going to begin.

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   All you need to know for now, I suppose are a few things. My name is Jessica, I'm 17 years old. I'm an extremely passionate individual who goes from hobby to hobby never figuring out what she really wants to do. I do know I'm going to be a nurse though, eventually - I start college next year. I love to sing, ice skate, volunteer, and experience life. I want to travel all over, see every inch of this earth and experience all there is to experience. My boyfriend's name is Logan - we've been dating for about 2 and a half years and eventually plan to get married and have kids and all that jazz. Not that it's very important, but I guess I should mention, (because of the nature of the blog) I have a large amount of life-affecting health problems all because of one pesky little genetic mutation. I'm not one to let something like that limit me, though.

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   Eek, I felt like that was a little long. I do apologize. On to something I've been MEANING to blog about lately:

    I lost 5 pounds! Not much, but hey, on my way! I've been mostly making healthy eating choices but I've been really trying to get exercise in as well. I have a gym membership but I feel like every time I go in there and see all the rooms and all the different machines that basically look the same but apparently have different uses I just get so confused my brain explodes, so like a zombie, I just go on the elliptical for an hour. (Did I mention I have an elliptical at home? Waste of an expensive gym membership!) So I decided I just can't figure out the weights on my own, and it's just a waste. 

    So... I've decided to start doing P90X! Yep, the most intense video-workout series ever. If you know me personally, you're probably thinking I've officially gone insane. Yeah, that's what my Physical Therapist thought when I told him. He laughed at me and thought I was joking. And then I told him I was serious. I've done a lot of research on it, and I'm confident it'll be good for me. I need that kind of structure. (very curious to hear what others with Ehlers-Danlos syndrome and the dislocations associated with it, think of this! Do you think I'm crazy?) Thing is, I know my limits and how to exercise safely - and I wholeheartedly believe ANYONE with Ehlers-Danlos could eventually do the P90X workouts if they worked up to them over time.

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I'd love to hear some feedback! Hit me with your best shot. Comment below the post. I'm hoping to make this blog an interactive sort of thing. Have any questions for me? Comment with them and I'll answer them in a post so that anyone else who might be wondering can also see the answer.

One more, very important thing! Yesterday, February 29th, was not only leap day but also World Rare Disease Day! Me and rare disease know eachother pretty well. It's a great opportunity to learn about some rare diseases and to spread some awareness! Here are some great websites for rare disease:

http://rarediseaseday.us/
http://www.globalgenesproject.org/
http://crdnetwork.org/

And to learn about the specific rare disease I deal with on a daily basis (one of several conditions),
you can go to
http://www.ednf.org/

Spreading awareness = Spreading hope for cures!

<3