Life Just Gets Too Busy!

I cannot even begin to describe how sorry I am! I haven't posted since June 9th?!?! I feel like I'm failing myself and the world. In all honesty, I've just been so darn busy! How do I somehow explain the last few months in one post? By naturally leaving out all kinds of important stuff, of course.

Well, let me try to categorize the updates so I don't go all out of order and mixed up!

Work
I started working at Kohl's in July, and still work there now. So over the summer and now I've kept up 2 jobs, while of course doing everything else! Hah. I just also got sort of "hired" with a home health aide (CNA) agency but they need to find me a client to work with and then I'll quit Kohls - more money to be made as a Certified Nursing Assistant.

School
I graduated from RHS later in June. While keeping up with those 2 jobs and everything else, I've officially started the Pre-Nursing Associate's Degree program at Lake Washington Institute of Technology. Started summer quarter, which meant my "summer break" (not really a break cause I still had work) consisted of a couple weeks between graduating and summer quarter, and a couple weeks after summer quarter before fall quarter.

Over the summer, at LWIT I did the Certified Nursing Assistant program and passed with a 4.0 - clinical was especially amazing. It was a week and a half working at Providence Hospital in Everett. Got lots of amazing experience and it really solidified my dreams of becoming a nurse! I then passed the state skills and written tests first try and just got my official license in the mail.

Now this quarter at LWIT I'm taking it kind of easy for one quarter - only taking Psychology and English 101. (ENGL101 is actually really hard though cause my instructor is really tough!)

Home
At the beginning of October, Logan and I moved into a little 514 square foot studio apartment in Redmond, near Bellevue, off 148th (for anyone who knows where that is). It's actually super spacious for a studio, and is so conveniently walking distance or a short drive from EVERYWHERE we need to be, and all kinds of shops and restaurants. (Literally a 2 minute walk from Safeway too!) We love it. Having bills to pay is hard, but it's worth it to be together in this amazing place :)

Love
Logan and I always have our ups and downs, like any healthy couple, but we never go to sleep, hang up the phone, or leave the apartment angry. And we are loving starting our life together. He's had the ring for a while now (and I know where it is, and sometimes I put it on and stare at it when he's not home, lol) but I have absolutely NO IDEA when he is planning on proposing or how! He says he has a huge plan and that for once, he wants to take me by surprise. :P (I usually figure out "surprise" dates pretty easily, and he can never seem to surprise me - I also picked out the ring...) So I've been waiting very anxiously for that.

Oh, I almost forgot! We went on an absolutely AMAZING road trip together down to California. Was about a week and a half long, and not only did we survive the 20 hour drive without fighting, but the whole trip was really just amazing. We spent 2 days in Disneyland, and saw and rode pretty much everything we had really wanted to, although we agree next time we'll do 3 days so we have time for shows. We watched the fireworks both nights, and stayed at a really nice hotel. Then we spent a few days with my family in Salinas, and I was able to show Logan my hometown :) even a little bit of Gilroy where I was born. Words really can't describe how fantastic it was.

Health
Nothing has changed too much in this department. Still have Ehlers-Danlos Syndrome type 3 (duh - can never get away from that, darn...) One piece of good news is that now that I'm living with Logan, he pretty much forces me to use my CPAP machine for my sleep apnea (says he doesn't want me to die and all that crap...)

A couple new things I guess. My chronic hypotension was just getting worse and starting to really affect me more (dizziness, fatigue, weakness, and random spells of confusion and "brain fog"), so I went to the cardiologist about that and they said I probably have dysautonomia/orthostatic hypotension (we already thought it before, so it was nothing new for me to hear). They put me on a medication called midodrine and it has been super helpful in raising my BP and helping me feel better. The only bummer is that it has some crummy side effects (tinglyness, headache, and of all things - dizziness!) and a lot of rules of how to take it (must be 3x a day, at least four hours apart, and I can't lie down or especially go to sleep if I've taken it within four hours prior.)

Also went back to my pulmonologist. Don't know if I had mentioned before how I had been previously diagnosed with asthma, but then went to an asthma specialist cause albuterol (inhaled medication used for asthma) wasn't working in emergencies. He basically said "well of course albuterol isn't working. I see asthma all day, and you don't have asthma. That's some other pulmonary condition". So back to the pulmonologist at Children's (really trying to break away from Children's and go to Swedish, but they are making it hard for me), they ran more Pulmonary Function Tests and we talked about some stuff. She said she suspects Chronic Bronchitis or something similar. Put me on a 20 day regimen of Prednisone (no fun!) and now wants to sedate me and stick a camera/robot down my throat into my lungs to grab some gunk and figure it out. Meanwhile I'm still on Pulmicort (the powdered inhaled steroid) 2x daily and now she is having me go learn how to use an "Acapella" 2x a day - it's a device that helps clear crap out - commonly used for patients with COPD/Chronic Bronchitis, Cystic Fibrosis, etc. So we'll see how that goes!

Recent Life
So as for the last couple weeks have gone, they've been a little bumpy. Got my wisdom teeth out on the 12th, so a week ago exactly, and I still haven't quite recovered. When I first woke up from surgery I started immediately having lung issues, so they hospitalized me that night, but were able to get me stable and good and sent me home that Saturday. It was a miserable stay but luckily they let Logan stay there as my "caregiver". Then since I've been home it's just been pain, pain, pain. Apparently now since my connective tissues aren't healing up quite right or fast enough (of course...) the bone is now exposed, which they call "dry sockets" for some reason, but what it means for me is pain, pain, pain. Apparently those nerves connect all over your head, and that's why I've had throbbing, piercing pain not only in my mouth/gums, but my cheekbones, my eyes, my forehead, behind my head, neck, behind the ears, all over my skull. So that sucks and I can't wait for it to be over! Especially cause I've missed a week of school and work now, and that's no bueno. But I still have a good attitute about it and I know rent will figure itself out this month, and I'm trusting in the future and just knowing that it could be a lot worse, and I've still got a lot of blessings! A place to live, 2 jobs, schooling, an amazing boyfriend who supports me through it all...

Life is good :)
Until next time, amigos.
-Jess

P.S. comment and update me about you! Also - if you're noticed how some words or phrases are links - that's something I do actually, and if you click on it it'll open up a new window with more information I may think you could know about it. (ex. the link on "Pre-Nursing Associate's Degree" takes you to the page of all the classes I have to take for it...  the link on "Certified Nursing Assistant" opens a new page with a description of what a CNA does. etc.) Just things I thought you'd find helpful! :)

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

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