Friday, March 29, 2013


No posts since mine so we'll just dive right in to what's happening with me :).

I have a cardiologist appointment coming up, I'm both nervous and excited. My Cardiologist actually cancelled on me, and the soonest appointment was with another Cardiologist, so I'm nervous because it's a new Cardiologist, but I'm excited because it's a new Cardiologist! Ha- hopefully you get what I'm saying. I hope he/she can offer some fresh perspective. My current Cardio is incredible, but I am hoping this Doc is less eager to prescribe me medication without first investigating more or at least starting me on small bits at a time. I've been a little traumatized (haven't most of us? Ha.) with my previous, more recent experiences with medications. I never really thought I'd be one of those Dysautonomiacs who would have a bad story about a medication... Ah, at least it took about four-five years before that happened!

I have been still having ups and downs. Lately my BP seems to be more often over 120/80, than under. And my pulse has been higher, but it's March and March doesn't seem to like me very much, so...

I'm still trying to be a crazy craft lady. Today I went and got some scrapbooking type supplies, and I've been making cute (if I do say so myself!) gift tags and cards! It's nice to have something to sit down and focus on and be productive. Ahh, its refreshing when you have a productive day, isn't it?

I have some other ideas of things I want to make, so hopefully I can do nice things with what I have now, and then maybe move on to more variety :). I'm hoping to make some awareness stuff!

Alright my lovelies, have a lovely weekend and Easter! Praise be to God for Christ's glorious sacrifice! He is risen!

Until Next Time...

Friday, March 22, 2013

What Are Some Hobbies You Have?

Hey guys!

I'll start off by responding to the previous posts:

Miranda: I am glad you finally got the diagnoses of EDS, however, I'm sorry you have it :(. I think you've known for a while now, and diagnoses can be a mixture of relief (finally have an answer), yet a stress (having a new diagnoses). I'm proud of you for planning for college, good for you and go you! I'll pray for you with the stress <3 .="" actually="" anxiety="" be="" can="" feel="" frustrating="" have="" how="" i="" incredibly="" it="" know="" logically="" p="" problems="" so="" to="" too="" transfer="" understand="" what="" you="">
Rhianne: Go you for pushing through your symptoms and having a high attendance rate. You should get an award because I think for a lot us that seems virtually impossible. Ha. Whoop for Rhianne! Good for you too, reaching for your dreams and studying hard! Also, that's amazing about your vacation/holiday! :).

Alright, on to what's happening with me... Hehe.

Right now, really not a lot. Like I said in my previous post, I am trying to push my limits, and as I do that I am finding myself having more difficulty with that. This time of year just doesn't seem so nice to me. But we all seem to have our bad time of year, am I right or what?

Right now I think I have a virus... But I've been working on crochet projects throughout the day off and on, and I've enjoyed that. I'm not a big fan of non-natural fibers, I've read some things about chemicals added to our blankets and stuff (I think it was to make it fire-retardant or less flammable or something) actually causing insomnia. For a while I had been very unrealistic with how I wanted to go natural, but I think I'm coming down to the real world. I've gotten some 100% virgin wool for cheaper than its regular price (with coupons) so I'm being spoiled with that at the moment.

I read somewhere about someone explaining a healthier way to be more natural. Basically, it was mostly in respect to relationships, how it can in my own words, be overbearing. And so, that's helped me be a little more lenient and I think its better that way :). Right now I'm trying to make things to sell on since I can't work right now as some sort of means to bring in income. I've recently been blessed with some money and I'm trying to use it wisely, and thus far I've been using a bit of it to purchase things for making different things. Its really fun too, so even if I end up never selling any of it, I'm really enjoying it! And... its productive!

Alright my lovelies, I'll leave you there...
My question is (probably been asked like five times before... but they change!) what are some hobbies you have? Right now mine is basically crafts. :).

Until next time...

Thursday, March 21, 2013

Rhianne checks in

Hey guys.
Its Rhianne.

I will try to keep this short and sweet but I decided to make a post about everything. I haven't posted in months and months. Probably like a year I swear!

I had a really rough year last year and at my worst I could stand for two minutes without fainting. However, I still managed to maintain a really high attendence rate and I finish Year 11 with firsts or seconds in all classes (except for English).

I got better over September. I even got to go on my first family holiday since POTS! We went to a bunch of amusement parks a few hours drive north and stayed in a hotel. I managed to go on even the scariest of rides and suprisingly I didn't feel the slightest bit sick. I did have to use a wheelchair for the trip though.

I started Year 12 which is my final year of school. Its so busy. I am hoping to graduate with an ATAR mark of 90 which will easily get me into my dream course of occupational therapy! However, to get that I need to study hard.

I also need to do some extracirriculars to put on schlorships. I do karate now and I help out at the primary school. Its all really hard for me but I throughly enjoy it. The people at the Dojo (what a karate place is called apprantly) are really nice about the whole POTS thing. My fitness suprisingly isnt that far behind everyone else. I do have trouble doing some exercise things like stretches.

So I think that's my life. It's not that much but between tutoring (I have gaps in my knowledge from missing school) so I get tutored for Maths and English, Karate, volunteering and school I am crammed for time.

I now need to go study for exams. Sorry for anyones day I took up. I might do a random post like this every so often.

Wednesday, March 20, 2013


So I haven't posted on here or my other blog(s) in a really long time for a multitude of reasons, so I'll just give a quick update.

In January I finally got in to see Dr Grubb. We drove through a snowstorm in whiteout conditions to get there, then spent the night and had the first appointment of the day. He was with us for almost 3 hours (and was amazing); during that time I was diagnosed with EDS Type 3/Joint Hypermobility Syndrome, which explains why I developed POTS then was put on Mestinon. My mom and I now have an ongoing joke that it's all her fault that I have so many health problems, because apparently EDS is carried from the mother.

Rewind to December, about a week before Christmas I got part of my big toe nails removed on both feet. From what I've experienced, the findings that EDS people tend to resist local anesthetic to be completely numb is true; I had twice as much novocaine then couldn't feel my toes for 20 hours instead of the usual 6. The drawback to having twice as much anesthesia is that it also had epinephrine in it, so not only did I have numb then painful toes, but it was messing with my blood pressure and pulse. My left big toe healed in about 8 weeks, while my right never did. So after two more removals/debriding and a course of antibiotics for the infection that set in, I finally saw a different podiatrist this Monday. She seems to think that it's finally starting to heal but gave me more antibiotics (which mess up my stomach more than anyone could imagine) and sent me for an x ray to be sure that the infection hasn't spread to the bone.

Other than those whole fiascoes, I've started (psycho)therapy again and am on more medication (Luvox, Prozac and Lamictal) because of the impending doom stress of going off to college in less than 5 months. After having a few sessions with my therapist, she suggested starting Cymbalta which could also help with the joint pain that I've been having, so I'll be talking with my psychiatrist about that at my next appointment.

Speaking of college, I was accepted to a college that is only about a half hour away from home, which my parents are happy about, and received over $24000 in grants and scholarships. I only plan to stay there for a year, then broaden my horizons to a school that is actually in my top picks. This Saturday is an all-day admitted students orientation thingee, so I have no idea how touring the entire college/walking around for 5 hours is going to work out. I also plan on getting disability housing (such as bottom floor, access to elevators, etc.) but I'll have to wait to get a meeting with one of the disability advisers for that to be concrete.

Anywho, I'll go onto the questions.

Logan: I'm so happy that your sensitivity is better!!

Hannah: What is your favorite "pick up" beverage? I'd usually go for some Gatorade, but only the cool blue kind (it's the best).

Until next time,

P.S. I forgot to mention that a few weeks ago I got two pet rats, which explain why the title is 'Rats', I'll share some pictures on a later post. :)

Friday, March 15, 2013


Hey lovelies!

I'll start off by responding to Logan's post :). Girl, it definitely makes sense about the medication. I'm kind of in a dilemma with my Midodrine. When I first started taking it again (after a few years) I started it with Propranolol which caused bradycardia and low blood pressure. However, after I stopped the Propranolol the bradycardia kept coming. Finally I figured out that I was getting the bradycardia shortly after a dose of Midodrine. But now that I've stopped the Midodrine it's like some other symptoms come back so it's one of those things where you have to decide if the benefits outweigh the negatives!

I have been trying pretty hard recently to test my limits and see just how far I can push myself without having a horrible crash. The past few weeks have been crazy, as some of you guys know (to be honest, it's one of those days where I don't want to talk about it, but my grandma passed away and my grandfather on the other side of my family just got out of the hospital after a scare), and I've just been waiting for a horrible crash. I have had my crashes for sure, as well as getting ill and having awful symptoms, but I haven't had a crash yet where I'm stuck in bed for a few weeks. Hopefully that makes sense. I have been experiencing bad fatigue again though!

I'm trying to push myself to be more productive and do more even when I don't feel like it. Today's one of those days where I feel like I could just sleep (My mom had overnight babysitting last night and I took over for her) but mentally I don't want to do that. So, I'm sitting outside soaking up some sun as I write this. Whoop, Whoop! It's one of those days where I have things to do but you're just so tired you really don't know how because of lack of energy, but hey, I am working on this post, and that is indeed a plus!

I had actually gotten offered a job at a vitamin shop, and let me just tell you, this girl was super stoked. However, after coming down from the initial excitement, I have realized realistically, at this point I'm just not there yet. There are signs that I might be getting to a point where I can do a laid back just but at this point I just don't think I can. It's hard to gauge how long it will take because it's taken over a year just to get to the point that I am at now.  So for now, my job is helping my mom with daycare and for that I am thankful :).

Alright y'all! I hope you guys have a lovely weekend!
Here's my question... What is your favorite "pick me up" beverage? What I mean is, when you're worn out and attempting to have something to give you energy. For me, I love tea (though sometimes it gives me tummy issues). And occasionally, coffee! But that is evil for acid reflux and can accelerate heart rate without caution so it's not usually the first thing I go to :).

Until Next Time...

Tuesday, March 12, 2013

So I Have Some Good News..!

Hey guys, so Hannah has been working very hard at getting this blog going again. Hopefully we will have many more people posting, including some guests!
Things have been pretty interesting for me lately. Over the last month I've noticed that my sensitivities have improved a lot! My level of sensitivity to sound, light, touch, smell, temperature ect.. really varies alot from day to day, but most of the time I am probably only 1/2 or 1/3 as sensitive as I used to be. I have had a few bad days where my sensitivities were extreme like they normally are, but otherwise the only time my sensitivities were really bad was when I had migraines.
I'm thrilled! There's so many little things like being able to take a shower without needing ear plugs for the noise of the running water, or being able to turn up the volume louder on the TV, or being able to wear jeans with no protection despite the scratchy fabric. My dad is taking me out to places like stores and libraries more often, and at dangerous/busy times of the day. Normally when I try to go to a store or library or something, we go late at night or dinner time so that the stores will be empty and quieter. Now I'm getting a little more adventurous!
 My POTS has been a little worse though, and more.. unpredictable than usual. I'm having huge swings and I never know how I'm going to be feeling every day. On good days I can usually stand for 10-20 minutes! In general on those days, as long as I take my meds, and my salt, and get fluids, and I don't do anything stupid like jump up and down or try to run up a flight of stairs, I'm usually fine. 
On medium days I can only stand for a few minutes (no more than 5 at the most), but I can sit up for as long as I want.
On bad days I can't stand at all, and sitting up may be difficult or  I may not be able to sit up at all.
I never know what to expect, and its very annoying waking up and wondering what card my body has dealt me that day. I would consider increasing my meds, but while that may help on my bad and medium days, I'm afraid that it would mean I would be taking too much medication on my good days. Does that make any sense? lol
I'm getting kind of lightheaded, so I'm going to just save this. Talk to you guys soon.
Jesus Loves You! 
- Logan

Monday, March 11, 2013


Hello beloved followers! 
We are currently under "organization construction." (Does that even make sense?!)
We are working to try to get things moving here again. We are working to get a post everyday again, as well as a little something'something else :D. Please keep an eye out! 

Friday, March 1, 2013

Hey lovelies! I'm sorry I didn't read through the last posts :(.

This past week and the week before has been very challenging. My grandma passed away and my grandfather is in the hospital at the moment. So it's been one thing after another but nonetheless God is good :)

Trough this I'm learning new coping mechanisms to deal with stress because simply put, there's too much going on to continuously have on mind... And it can be hard not to think about things when you're sick at home, you've got plenty of time to think! But I've been throwing myself mentally into things whether its crocheting, sewing, drawing, or what have you. It's teaching me in a sense to push myself beyond my limits and be more productive in order to stay sane. Now here soon I might have a total crash blow out, but we'll see!

I think us dysautonomiacs should have a bit of a conference though to see what's happening with this blog. I myself am guilty of forgetfulness and neglectful ness at times, but I think we should really come up with a game plan :) when I can think to, I plan to try to get the ball rolling :)

I love you ladies and you readers, thanks so much for taking the time to read our musings.

This is such a short post I apologize, I have a lot on my brain at current.

Until next time....