Sunday, July 31, 2011

Meet your Sunday...

My names Erin.
I am a soon to be twenty something year old from the Midwest.
I am going on six years of college, but will be graduating in May 2012, finally.
..and as you figured,
I have POTS & EDS  

I just thought I would make this post be a get to know me post, since that is what the others did at the very beginning. So here it goes

I love meeting new people. 
I think communication is key to getting through lifes struggles, especially for those who have a chronic illness. Having someone to relate to and completely understand your symptoms and struggles can be so healing.

I hate the heat. 
Not just because of POTS (which we all know makes it extra worse) but I really can't stand it.
My favorite season is fall. I love the cool, crisp weather and watching the leaves changing, & listening as they "crunch" when you step upon them.
Did I mention the apple cider?!

I am an only child & learned to be independent at a really young age.
My mom is my support system and I really don't think I would have had the strength without her constant guidance and support. I also have a wonderful boyfriend (my high school sweetheart to be exact) that I have been dating for almost seven years now. He has been with me through it all and has never left my side. I am a lucky girl to have found such a great guy :)

I have always struggled with my health.
Ever since the age of seven. Ever since high school, I have never made it through a complete year without being in the hospital or having surgeries/procedures. The stigma of "the sick girl" has always been my label.

I have a strong obsession with owls :) 
I won't say why, but my future kids room will be owl themed, that's for sure!

I have a persona blog, that you can check out here if you would like to know more!

I also have just created a blog that is solely informational about the main facts of EDS/POTS and their correlation.  
I originally made it for my family, to help them understand this confusing health condition, but thought I would share it with everyone as well!


If you ever need anyone to talk to, advice, or anything, please let me know!
While I am a tad older than the other girls, I can provide insight on what it is like to go through college with a chronic illness!


Saturday, July 30, 2011

Saturday Blogger ,Francessca :)

So were doing a new thing  the dysautonomiacs are having a Saturday and sunday blogger,Me and Erin.
And for those who don't know me  Im Francessca (fran-chess-kah) for those who can't pronounce my name although my two year old ''sister'' can say it since 18months.Anyways your probably wondering do I have pots ??? Well of course i do because i probably wouldnt be on the blog if i didnt
I was diagnosed in 07 when i was thirteen years old im now 17
I showed the classic symptoms and it was simple to diagnose ,probably because my mom has pots
shes had it since 1980 thats a looooong time.It wasent even called pots It was called diagnosis X
I often wondered why they picked the name pots its so close to pot the drug as in weed
pots is hereditary alot of us get it from are parents  thats why ill most likley adopt kids when im older.
theres alot of advantages to having a mom with pots one big advantage was that i didnt have to go throw all the dumb tests like tilt table and junk.One thing about me is i hate to let people know im sick  i could be in the hospital right now and i would tell no one I hate pity and complaining i don't like whiners or symptom documenters i cant stand most of the groups on facebook  when people flip out because they lost a pound or there feet are cold its like big freakin deal  focus on something else dont let pots rule you :)
from reading past entries everyone seems to introduce there self with some fun facts here are mine

1 when I grow up I want to work in oncology pediatrics (cancer kids)

2 I like singing and have some unusual talent ,like yodeling and rolling my eyes back,feet behind head,farting with my armpit,pig calls ,impersonating celebs and singing like them useless little fun stuff oh and i can talk like Fran drescher

3 I'm Hispanic American and live with my mom and cat im fluent in spainsh but dont use it

4 i wanna marry a jewish guy when i grow up and do the hora  and i love sign language and wanna adopt a deaf kid when im  older

5 im the creator of dizzy dabee the dysautonomia rag doll and i have my own personal blog
called dizzy dabee

6 i collect babysittersclub sweet valley twins and lurlene mcdaniels books if you have any extras mail them to me lol

7  and i dont drive i personally think driving with pots is wrong if your super sick
i cant really think of anything else so i guess thats it  oh yeah just remember
oh and anyone who wants to add me on fb please do so!/profile.php?id=100000213605967
 im just that cool :) i dont have a cool  exit name thingy dont know how to make them thats gonna be my question  how do you make the little signuter thing ?

i really dont remember all the questions so im gonna wing it someone i think hannah asked about tremors ?
yes i get tremors alot i even got this new thing where my whole body shakes and i look as if im having some type of seziure or what not its kinda embrassing it happens in public alot and it looks like im doing something dirty like i dont wanna say because your all kinda young well hannahs like older then me i think but i think you guys get it 
i dont remeber the other questions
ill try to be a really good blogger i dont know much about pots my docter believes i should get caught up in that

my question how many of you guys where medical alert braclets ?

Friday, July 29, 2011


Hey guys! My mouth is doing better, and I go back to the oral surgeon on August 3 (next Wednesday) for a check up. My cheeks are almost back to normal, except for the bruising. And then next Friday I finally get to have my upper GI series done! I'll be making a video about that soon, and I'll attempt to film it. My chest pains haven't been so bad, but I think that's just because I've only been eating soft pretzels and bananas & peanut butter. The regurgitation is still the same, I had a panic attack the other day because I took a pill and it came back up and got stuck. I've had some tremors, but not full body one's, usually just my arms or legs. I'd really like to get an EEG done to see if I'm having seizures.

I really can't think right now, I am so tired, even though I just took a 5 hour nap, so onto the questions!

Rhianne: I know you didn't have a question but I just wanted to put this on here for you : )

Michelle's Question: What do you think is the hardest part about having a chronic illness? 
I think it'd probably be not being able to do things that I want to do, in the way I want them. But it's not like I'm just going to give up on what I want to do, just because I have chronic illnesses.

Hannah's Question: When (if) you have tremors, do your eyes roll, do you go “in and out” like your not there then you are, do you have trouble speaking, do you get dizzy and have weakness so bad you can’t walk after? It depends on how bad mine are, my eyes roll when I'm having a really bad one (like in the oral surgeons office), but when they're that bad I can barely remember them.  With the usual ones that I have I do have the trouble speaking (and thinking), dizziness and weakness; those ones are usually just in my legs and/or arms.
About the liquid food: I have to be really careful with the food I eat, because if there's too much acidity in it my tongue will swell and it makes regurgitation worse. 
I almost forgot, but thank you so much for the card and slushie! That was so sweet : ) I was so out of it when you came over, so you'll have to come over some time when I'm not in pain or on pain killers.

Cheyanne's question: Do you all get brain fog and how long does it last? Yes, I get it really bad and I have it a lot. Sometimes I'll just go through out the day saying weird stuff or I can't even add 2+2. 

Enough of my rambling...Until next time,

Wednesday, July 27, 2011

I got some good news at the doctor for once!

Hello, I'm Cheyanne. I'm subbing for Tana. (: I am 14 and live in the sunny state of Florida. I have been diagnosed with POTS since December of 2010. The cause is unknown. I'm looking forward to getting to know all of you. It is nice to have other people my age that I can relate to.

All of this week and last week I have been going to doctor appointments. They had done a CT scan and had found mucus plugs and scarring on my lungs. We had no clue on how I would have scarring there. So that doctor sent me to a pulmonologist. I saw her yesterday and she did an x-ray and another breathing test that I have the tendency to pass out during. Luckily I did not. When they looked at the x-ray my lungs looked fine. So the poor doctor was kind of confused. Thank God there is nothing wrong with my lungs now.

We have been trying to rule anything and everything out that may have caused my POTS. My ANA titers came back and I have no autoimmune diseases (i.e. lupus, rheumatoid arthritis, etc.) The only other thing it could really be is a mitochondrial disease or Ehlers Danlos Syndrome. I had the gardasilshot a few years ago. Afterwards I started experiencing mild symptoms. I am sure that played a role in causing the POTS, but I don't think we'll ever know.

I don't really know what questions to answer because this is my first time doing this, but I'm just going to answer all of the questions since last Wednesday.

Michelle's Question: What do you think is the hardest part about having a chronic illness?
I think the hardest part for me is not being able to hang out with my friends and constantly be on the go. I am one of those people that love to be busy and sitting at home all of the time has been very hard on me. Also another is not being able to play softball. 

Hannah's Question: When (if) you have tremors, do your eyes roll, do you go “in and out” like your not there then you are, do you have trouble speaking, do you get dizzy and have weakness so bad you can’t walk after?
I do get tremors. Afterwards I feel a little weakness, but none of the other things happen. The other day I was watching tv with my mom and had gotten this terrible pain in my back that lasted a good 5 minutes and every time I would move it would come back. A few seconds later my arms started shaking uncontrollably and then the rest of my body did. I came to the conclusion it was a muscle spasm, followed by tremors. 

Miranda's Question: Do you know any good recipes for liquid diets?
No I do not. I am very malnourished as well. I have a lot of the GI problems. At times I have gastroparesis and my stomach does not want to work and other times my IBS will act up. Then there are times where it wants to work normally. On days where I am really sick I just stick with really bland foods. 

My Question: Do y'all get brain fog and how long does it last? I have been having some trouble with that. I am hoping that going back to school for one period will help my memory a little more. 

-Cheyanne :) 

Monday, July 25, 2011

Monday recovery

Hello everyone, I'm Michelle Rivera and this is my first time on here, subbing for Rhianne. (:
I'm 17, I live in Houston, Texas and shortly I'll be starting my Senior year of high school  or year 12. I'm really in love with photography and I plan to pursue that career when I graduate. I've been sick since December 2009 and I barely just found out I have dysautonomia in March of this year. I also have GI problems and I'm starting to think I have fibromyalgia as well. :\

So my week was a little different, On the 21st I got Nerve blocks for the first time ever. It was a painful experience but now my neck doesn't hurt near as much as it did after Thursday, which is good.   I'm hoping through all that I can have some temporary relief from my ongoing headaches.

I guess on to questions?
  • Hannah, I've never had a experience with Tremors, yet. And I hope you find something that helps you out.
  • I never looked for liquid diet tips and never have been on one, but I'm sure you can find many over the internet. If you find one that helps you let me know ;)
  • Erin, I've come to the conclusion that I have POTS, and I say it like that because my doctor gave me a vague diagnose when she told me I had dysautonomia.
My question.
What do you think is the hardest part about having a chronic illness?

I'm really looking forward to getting to know everyone (:

til the end,

Friday, July 22, 2011

Tremors Stink!

Hey guys! I am posting this week! Haha.  Thursday was bad, I woke up late and got really bad tremors. At least I think they’re tremors. My eyes roll back and I have trouble speaking. I’ll shake horribly then randomly it’s just like my eyes close and my whole body relaxes, then boom I get ‘em again. Sounds agitate them too. If I hear a loud-ish sound it makes me jerk. I’ll ask my question early: When (if) you have tremors, do your eyes roll, do you go “in and out” like your not there then you are, do you have trouble speaking, do you get dizzy and have weakness so bad you can’t walk after? I’m trying to figure out if these are tremors. And what’d’ya know? I have another UTI and I’m on the same med, double the dosage!

Miranda, Logan and I had a great time together! I so wish I could post pictures but I can’t find my camera cord! I know, so disappointing! I’m glad Logan was able to post a picture.
Have you girls caught up on sleep? I’m still so exhausted! Of course we would have loved it if we could have shipped the rest of you Dysautonomiacs out here (yes, that includes you fabulous subs!)…But maybe that’s another time :)
Yesterday I rode a power cart for the first time in Walmart… I was embarrassed at first but I wore out slower and it was actually kind of fun! Though when I got home I had tremors (not as bad as I wrote about above, but it's been storming here and really hot so my body is a little bit of a mess!) and I had mad insomnia last night. So my body is just bleh.

On to your questions:
Rhianne: I sure hope things are doing way better for you! Your question was,  Are you a fainter? If so give me some advice! Fortunately I am not a fainter, but I get lots of presyncope. For that I just drink a ton, lay down and have my salt! I wish I could offer more help girl!

Logei: I hope your fever has finally come down! That’s torture! Your question was,  Do you struggle with your eating habits because of your Dysautonomia in some way? Yes. I think almost all of us probably do. I have days where I have a crazy appetite and days where I can barely eat…Days where I have trouble swallowing or horrible acid reflux or stomach pain, etc…And recently finding some foods I can’t eat.

Erin: You go girl on the full work up! You’s tough! I’m sorry about your EDS diagnosis but I am thankful you have that answer and another issue you are aware of so you can better care for yourself! I’m terribly sorry to hear about your mother, too! You guys are troopers all the way! Your question was,  What kind of POTS do you have? Hyperadrenergic, Partial Dysautonomic, or combined? You know, I’m not entirely sure. I never got a diagnosis on what type, but I believe it’s probably Hyper or combination because my mom and sister both show signs of POTS and I have struggled with both low and high BP. I’m not entirely sure about the differences, other than Hyper is usually life-long and Partial you can grow out of… Hyper has adrenaline problems and high blood pressure and Partial has low…Though you guys might have to correct me on that! It’s a lot to learn about and take in, for sure!

I sure hope you feel better! I feel for you right now being so sick from getting your wisdom teeth out. Hang in there! You’ll feel better soon :) Your question was, Do you know any good recipes for a liquid diet? I am working on some here and there for my blog, I think I have a couple up, but I basically throw a bunch of fruit in the blender with maybe some flaxseed or hemp protein powder. I’ve been adding almond butter too for protein, but you could do peanut butter or sunflower seed butter…Cashew butter even! To make it taste more appetizing if you add any powders, you could throw in some sweetener (sugar, stevia, agave, etc.). For some healthy fat and added nutrients you could throw an avocado in there. The only thing it really changes is the texture! I’d definitely incorporate some kiwi in what you make, they are a super fruit and add great flavor and texture! By the way, my dad got a bunch of almond butter really inexpensive so, I can bring you a jar if you’d like. And if you’d like to try my protein powder out, you can have some of that too!

Tana:  Miss you!!!!!!!

Have a good weekend ladies and readers!
Smile (you can always find a reason to smile:):
*I do not own this picture*


Wisdom Teeth Surgery

Today was awful. But I had them extracted and my face is super swollen. The pain medications they gave me wore off way faster because I can't have epinephrine, so I was in so much pain that I was crying when I got home. I had seizures/full body tremors (not sure which) really bad after the surgery. I asked my mom on a scale of 1-10 how bad they were, 10 being like a grand mal seizure, and she said about a 7. I honestly don't know why I wasn't taken to the hospital if they were that bad, the only time I have them that bad is if I'm severely dehydrated. I had a few full body ones before I was sedated but not that bad. I have a bunch of pictures and I explained more on my personal blog, so if you would like to check it out the link is here.

I don't really have much more to update, so I'll move onto the questions.

Erin's Questions: What type of POTS do you have? We're pretty sure that I have combination, and it seems like my mom, older sister, great aunt and grandfather have that too. Do you have Ehlers-Danlos Syndrome? No, but I think I have some kind of connective tissue disorder (I'm pretty sure about scleroderma) but maybe a hypermobility syndrome since I can bend my joints weird ways and my shoulder pops out of its socket easily. And to answer your question about Logan, Hannah and I living in the same state: no, Hannah and I do (we actually live like 5 minutes away from eachother), Logan doesn't.

Rhianne's Question: Are you a fainter? If you are, do you have any advice? Yes, I am. Recently I've been fainting a lot more than I used to. I don't really have much advice except for if you know that you're going down (I usually go blind first, then I lose consciousness) just make sure that you protect your head.

Hannah's question: Do you know of any natural remedies for headaches? No, I don't really use natural remedies, so I can't help you there.

My question: Do you know any good recipes for liquid diets? I'm really malnourished because I can't eat right, and I won't be able to eat anything solid for at least a week or two. 

I'm sorry if I forgot anything, I feel really sick right now.

Edit: It was my signature that I forgot!

Tuesday, July 19, 2011

I Miss You Guys Already!

Hi guys.  Not feeling well at all.  The trip was five days long, and two of those days were just traveling. I got pretty sick from sensory overload the day before we left, so I was already sick before we even got in the car. I think Hannah and I had a good time though, and it was wonderful to see Miranda too!
I'm still not feeling well right now, and I'm having problems regulating my body temperature constantly. I have to be very careful not to fall alseep with a blanket on, or my temperature goes up fast!

We also quick braided friendship bracelets, and we decided that you guys and any one else who posts on the blog is welcome to friendship bracelets too. I love to make friendship bracelets so if you guys want them too (or Hannah and Miranda if yours fall off) just let me know and I'll make one.

Today my temperature went up higher than it ever did on the trip, I decided to rest on the couch with a blanket for a little while and my temperature went up to 104! I was only under the blanket for 2 hours, I can't believe my fever went up so fast!
I'm too tired to look at questions, sorry.
hope everyone's feeling better than me!

Monday, July 18, 2011

Brain Fog, much?

Oh boy, it's 7:50pm... 
I almost forgot to post for the lovely Rhianne. 
Brain fog much?!

Anyways. These past two weeks have been a roller-coaster ride.
This last week I had a full autonomic workup done, EMG, NCV testing and more.
The only new thing I found out is that I have small fiber neuropathy.
Boo, but it explains my tingling feet/cold feet, hands, etc...
For more on this, check out my blog post here

Also, I have just been officially diagnosed with Ehlers-Danlos Syndrome III (Hyper-mobility Type).
I scored a 9/9 on the Beighton Criteria (my mom was diagnosed as well)
**her collagen is so faulty that her organs are not stable in her body & mesh nets are used to keep everything up :/ **
We are going to be tested for Vascular Type in a couple weeks to rule it out (chances are VERY low) but it is important to rule out.
It explains SO much and my neurologist and geneticist are working together to piece out my treatment.

I have always wondered why I have POTS and not knowing was fairly bothersome for me.
Even though my symptoms came on rather suddenly and were triggered by my wisdom teeth removal, overall, the root cause and biggest trigger of dysautonomia (for me) is the collagen defect known as EDS.

My question to you all is what kind of POTS do you have?
Partial Dysautonomic 
- or -

Also, do any of you have Ehlers-Danlos Syndrome?

Now for your questions!
I think the only one left is LB's question...
"Do you struggle with eating habits because of your dysautonomia?"

Yes. I have always struggled with my eating habits...(not always necessarily because of Dys though). I have have GI troubles since I was seven years old and been on steroids for years to control my colitis :/ Every time I would eat, I would get so much pain, I was constantly in the bathroom (not fun) and my weight would drop drastically. I was drinking boost for awhile and just trying to get all the nutrients I could. It is better not, but not great.

Take care everyone :)

Thursday, July 14, 2011

GI Appointment And Holter Monitor

As you guys know, I have a lot of GI issues (dysphagia, acid reflux and more) and my gastroenterologist appointment was today. That went really well. He wants me to take this OTC acid reflux pill (Prevacid), so I don't have so much pain and he wants me to take Miralax to "clean me out" because that might be making my pain worse. My Holter monitor was ok, but the top electrodes were itchy because my nurse didn't clean the sites with alchohol first and the bottom ones dug into my ribs. I still have marks from them, even though I took it off 8 hours ago. I ran around outside (it felt like it was 100 degrees!) for a few minutes, because apparently I was supposed to do that. I'm still exhausted from that, even if it was only like 50 feet back and forth.

I'm going to the midnight Harry Potter premiere in an hour, so when I return my childhood will be over. :( But I am going over to Hannah's tomorrow and I get to see Logei too! I hope you two don't tire yourselves out too much today!

I made a video with a few pictures of the past few days with my Holter monitor and at the GI doctor, so here's the link.

Have a good day everyone!

Tuesday, July 12, 2011

I Forgot My Shoes!

I was feeling pretty good for most of the day, but I got sick at physical therapy. The two awesome trainers wanted me to swim two laps at once (these laps are really small, the pool is tiny!) I didn't think it was a good idea, but i gave it a try.  I finished the second lap and stood up in the water and got a NASTY headache, not only from the exercise but I was worn out from whole environment there, especially the temperature of the pool, its always too hot! My dad said I got pale, and I felt awful. I tried doing some sitting exercises in the water, but that didn't help. I had to get out of the pool and cool down.
OH, lol - I forgot my shoes today!  It was hilarious I walked in and out of PT barefoot.

I tried something nasty today! It was a raw meal replacement drink from the same brand as the protein powders I've been getting.... it said to just mix with water, so I did.  It looked and tasted like goo from the bottom of a pond, but the nutrition in it is amazing, and drinking it actually gave me some energy and made me feel a little better. So I'm determined to drink no matter how horrible it tastes! :
Rhianne's question:  I have only fainted a few times thankfully!

Hannah's question: The only natural help I have gotten from my headaches is from simply switching to a healthier diet. I still get headaches (mostly from sensory overload), but they are shorter and less severe than they used to be, and I don't get headaches otherwise.

Erin's question:  I have struggled with my weight for a long time, but my metabolism seems to adjust to my diet when my calories are low, so that definitely helps alot. 

My question: do you struggle with your eating habits because of your Dysautonomia in some way?


Sunday, July 10, 2011

Hold on, baby you're loosing it

This week has been crap.

There is no nicer way to phrase it then crap. 

So I am going to start with my week.

On Monday, I did schoolwork and then when over to a friend's place to get help in Maths. I was pushing myself but I wasn't going to admit that.

Tuesday I did schoolwork in the morning and then in the afternoon I crashed really hard. I went to watch Angus, thongs and perfect snogging but even that seemed too hard for me so I went to sleep and didn't eat anything for dinner.

Wednesday, ah the wonderful joys of Wednesday. Worst. Pots. Day. Ever. As you guys know I spent Wednesday night in the ER. I got to the point at home, where I couldn't speak, or even crawl. So Mum drove me in and they put me straight in via the ambulance entry in a wheelchair.

The doctor I saw was really good. He didn't know of Pots but he did some quick research and decided to give me an IV and also check my salt/potassium levels.

I got three litres overnight and managed to walk out of the hospital Thursday morning where I slept all day. 

The next bit I will be lazy and copy and paste from my blog...

We left at 3am Friday to drive to Sydney and we had some time to kill before we got there so we went for a drive around Sydney Habour and around the bridge and opera house. I don't have pictures sorry! The iPod was flat.

Then we went shopping and I'll post a seperate post about that experience.

It was pretty unproductive actually, I don't understand why they got me down there in my opinion.

Both my parents were in the room, as well as my professer, his registar and my social worker.

We talked about pacing and how I shouldn't overdo it. Haha, comes from the people who made me overdo it against my own will during my last admission.

I got posturals done, weight and height. My weight has gone up a bit after my recent weight loss and my height is 174cm I think. 

I blacked out a few times going to the next room where they did all that stuff. When I got back my breathing was all over the place and my heart was pounding. I was    dizzy as and everything was shaking.

The appointment ended and my
social worker and professer left. His registar was filling out some forms for us.

When we went to leave, I stood up and collasped into my chair, blacking out. Dad tried to help me up but I just crashed into him hard and fainted. Tried again, ditto. 

The registar came back to return the forms and the OT came and got me a chair.

They sent me home like that.

They sent me home unable to walk, stand or speak one sentence.

Anyway car ride home, bad earthquake vertigo had to crawl into my Aunty's house where we stayed. I threw up four times. Then went to sleep.

Then I came home Saturday. Yesterday, I can't remember what I did. And today is still shit as. I have fainted like everyday this week and my tremors and vertigo have been so bad. School goes back on Tuesday so I hope I can return. I go back to hospital for a two week admission on August 1st.

This post is turning out to be...long. Sorry guys.

Trixie is doing well and is getting along with my labrador. Just thought I'd mention that.

So now, finally! let's get on to the questions shall we? 

Logei asked: does nutrition have a big impact on your symptoms? 
Yes. It does. I find whenever I eat crap (chocolate, junk food, excetra) I feel so bad and tachy and everything. 
Erin asked: Any weight loss or gain since pots?
Since starting on my SSRI I have lost five kilos in a few short weeks.
Hannah: Any natural remedies for headaches? 
Water? Sorry I don't get headaches. True fact about me: I will only get a headache when I am about to throw up. :) it's useful when nausea is a symptom but if i have a headache its like pass me that bucket! 

My question is: are you a fainter/if so give me some advice! 

Yeah I haven't been a fainter since Wednesday. 

And haha I have a funny fainting story. Okay I was talking to my Dad in the hallway and I go to faint so I go to grab hold of him around the neck except I miss-punching him in the face! I regain consciencness to ah! you bitch! haha it was really funny. It was revenge for when he was zapping me in my wheelchair on Friday causing me to spill a bottle of water on myself.

Well I am going to go because this post is way too long and I am sorry for that.


Friday, July 8, 2011

Hey, Hey, Hey!

Hey, hey, hey!
I shall start with my week. You guys know I went on vacation, the first day went great! But, the next day I got horribly a restaurant... They were afraid because they thought it was because they had given me gluten food after I had explained that I needed gluten free so it was just a mess (but funny now- I don't think they'll be doing that to anyone else lol. I'm not mad though!). I was tired and not feeling good to begin with but I went out anyway and got hit with vertigo and presyncope and a bad headache.

But! I got my puppy, now I have her and Gizmo. If you read my blog, you already know, but I named her Zipporah after Moses's wife (in the Bible). I was obsessed with that name as a child! She is a ball of energy!
It's been really hot and humid this week so I've really not done too, too much. My sister and I did go out one day but man it tired me out! I also got to see my friend yesterday and she brought me a sweet gift. One of the things was a "Pep talk" button (like an easy button) and it gives you humorous pep talks which I thought was so perfect.  I cannot seem to catch up on my lost sleep from my trip so I'm just blah this week. But my body will have to stop the insomnia sometime to catch up...It's just bound to happen :).

I am playing with my diet again since Logan is getting good results with her health from having raw food. I don't think I'm going all raw, I don't even know where to begin, but for right now I'm cutting dairy out to see what happens with my GI, and I'm eating lots of raw food as well as really healthy cooked food. Hopefully I can stick to it this time! I am also trying to cut back on sugar since it suppresses the immune system and I read or heard somewhere that it causes inflammation of the GI track. I'm really hoping since fixing the gluten issue is helping my GI so much, that I'll find more things to help my GI the rest of the way!

On to the questions:

Logei: I am really sorry about your goldfish :(. BIG HUGS! I am so glad raw is improving your symptoms so much. I really cannot tell you how happy I am for you! Your question (other than my gluten issues): Does nutrition have a huge impact on your symptoms?
Even aside from the gluten, yes! I do notice a big difference when I eat my fruits and veggies and when I don't. It really helps my GI and overall energy.

Miranda: I am glad you are finally getting your GI appointments but sorry that you are having so much GI pain right now. I know I've said this before, but have you tried eliminating things from your diet and seeing what happens? I know even when I was barely eating, when I would eat I might eat something soft... like bread (which has gluten) and it was just a mean cycle. You sound so much like myself with your symptoms. I really wish it wasn't happening to you! I've had really scary episodes with choking too! Hopefully and prayerfully your GI doc will so help you!
Your question:  Do you guys have vision problems? I have astigmatism, and I have lots of blurry vision and floaters sometimes but I now attribute that to my POTS since the eye Doctor really can't offer much help.

Erin: I love your idea! And you subs are most definitely part of our blog crew. You play an important role! I think that we should do it! I love it! I also hope that your geneticist appointment today goes well. Keep us posted on how things go. I said a prayer for you and your mom! Your question: Has anyone had difficulty with weight gain/loss since their diagnosis of POTS or starting new medications? Yes, I think the POTS or Dysautonomia messes with our metabolism. I think when I first got sick (I have a hard time remembering that far back) I did gain a couple pounds but I think that was just because I wasn't allowed to play sports anymore or be active. More recently I lost weight since all of my GI problems got bad. Now, I am generally maintaining.:).

Rhianne: Feel better darling! Rhianne had been in the ER recently, so HUGS! 

My question: Does anyone know of any natural remedies for headaches?
I have headaches, my friend is looking for natural remedies for hers, my parents have headaches, my sister has headaches...Ahhh, everybody has headaches! This is really a random question and it's not because my headaches have been worse, I am just curious! I feel like Silver Hydrosol helps with mine, at least the ones from allergies. Thanks guys!
Have a wonderful weekend!

~Hannah (Miranda, I need to get going and save my sig from one of my old posts like you said haha)

Chest Pains With A Side Of Nausea?

Oh, that'd be me! I want to crack up when I hear that. Rhianne commented on my Facebook status yesterday, which was the title, with "you should have ordered the earthquake vertigo with a side of dizziness." It really is nice to know that I have you guys to talk to, and joke with. : P

I haven't been that great the past few days, I'm still having these awful chest pains, and I don't want to take any anti-acids or anything, since it's so close to my GI doctor appointment (just in case he might want to do testing that day). In addition to that my blood sugar has been spiking a lot and same with my blood pressure. I have lost another pound (that's like 1/2 kg), so now I'm down to 117.

If you've seen my personal blog recently, you'd see that I have the results from my blood tests back and my doctor says they're normal, but I disagree. I researched a lot on all of it, so if you're interested here's a link to that page. I also got the date for my wisdom teeth ( I have 3) extraction; it's July 21 at 9:15 AM. The dentist/oral surgeon is really nice and understands that I don't want just numbing (without epinephrine in it of course) but general anesthesia, which is what I'm getting. I'm also going in this Wednesday (July 13) to my cardiologist again to get my Holter monitor.

On to the questions...

Logei's question: Does nutrition have a huge impact on your symptoms?
It does! I'm extremely intolerant to any food/drink right now, but I am lactose intolerant and I have a geographic tongue, so anything even slightly acidic is a no. But eating fatty or greasy foods makes me feel awful! I try to stay generally healthy (when I can eat), so I don't feel any worse.

Rhianne's question: What's your favorite type of exercise?
To be honest, I am quite lazy, but I like to swim. Although most of the time I am on a floatie, even though I can swim really well.

Erin's question: Has anyone had difficulty with weight gain/loss since their diagnoses with POTS or starting certain medications?
I'm losing a lot of weight (obviously), but that's from my GI issues, but when I was on a higher dose of Florinef I gained weight.

I can't remember if I wanted to write any more, but if I do I'll just edit it in. Sorry Hannah, for posting on your day, but I'm only a few hours off, so feel free to post today too!

Have a good weekend!

Wednesday, July 6, 2011

What do you think...

Hey ladies and gents : ) 
(I'm subbing again for Tana)

So, I have an idea
Actually, it's was originally my wonderful friend Brooke's idea!

Over at the TDC (The Dysautonomia Connection) around this time last year, a couple of us decided to exchange mailing addresses and send letters/cards/etc. Today, I got a letter from Brooke :) 
I don't know about you all, but getting letters in the mail sure makes my day! 
(I actually get loads of bills, student loans papers, etc...) so GOOD mail is always a positive. 
{Or in your case} any mail at all is probably a positive!!

Thoughts? Do you think this could possibly be an idea. Now, I am only a sub and not really part of your wonderful blog and all, so maybe one you can adopt the idea or something!!

Lastly, I am really excited for this Friday, as I am going to a geneticist for further evaluation on which EDS type I may have. We learned that my mother almost definitely has EDS (we think classical) so this appointment may explain the cause of my POTS. For that reason and that reason alone, I am anxiously awaiting my appointment! It will be nice to know what "caused" my POTS if this EDS diagnoses is accurate ♥

::Question Time::

Francesca's question
If french fries are called chips, what are chips called?
Actually, I have never called french fries chips... I think french fries should be called FF & chips, chips. So, to answer your question...I guess it depends on the person?

Hannah's question
What are your POTSy essentials while traveling? 
Sunglasses, Inhaler, Phone, and Wallet (these are with me at ALL times)
As for POTS needs, Gatorade/Smart Water. 
Everywhere I go, I take one of these two liquids with me.
Also- I never really go anywhere farther than 10-15 minutes away, as I get car sick/motion sick very easily and with this summer heat, I cannot bear to be out and about for too long.

Miranda's question
Do you have vision problems?
I have never had ANY true vision problems. 
I actually have more than perfect vision 
{according to my freshman high school eye-check up 9 years ago done at the school}
...maybe I should get a check up sometime as I have never been to an eye doctor...haha
BUT...I do have blurred vision, eye strain, focusing problem that I just attribute to POTS

Rhianne's question
What is your favorite type of exercise?
I actually LOVE yoga. I took these classes in college and it motivated me because I actually had to show up (as I was getting graded!) and I really learned to love the inner workings and deeper meanings of the yoga traditions...

LB's question
Does nutriton have a huge impact on your symptoms?
I was once told I was lactose intolerant for two years. Then they said I grew out of it, but I really think that I should still be avoiding dairy products...
Also, I had my gallbladder removed and I have severe GERD, so highly acid foods really bother me. 
The worst is grapefruit. It gives me pleurisy attacks, makes my heart race and the acid is just awful.
Overall, I just try to eat a well balanced, low sugar diet. 
Lastly, I really want to try to go Gluten-Free as I have Lymphacytic Colitis (I was on steroids for three years for it) and have had really bad GI issues my whole life. 

My question!
Has anyone had difficulty with weight gain/loss since their diagnoses with POTS or starting certain medications?

Hope everyone had a good fourth!
Take care and stay cool!

Tuesday, July 5, 2011

Feeling Better

I decided to try a raw liquid diet a little while ago... it actually seemed to help alot! I tried making some healthier protein/nutrition shakes using a raw protein powder and drinking those instead. I definitely feel better drinking those instead of the junk that I usually have! Some of my symptoms have actually gotten better, I have more energy, and I'm stronger too! I've actually built some muscle, and my skin has cleared up some too.

One of my goldfish died today though, so I haven't been in the best mood.

Francesca's question: I have absolutely no idea.

Hannah's question: My traveling essentials are ear plugs, sunglasses/contacts, something with calories to drink so I don't get light headed, and a sweater or a hoodie. I need to carry a sweater with me even when its warm out, I never know when there will be temperature changes or if I'll have a chill.

Miranda's question, I usually do have vision problems, but I really haven't had any this week.

Rhianne's question..... hmmm thats a tough call between swimming and horseback riding.

My question : aside from Hannah...Does nutrition have a huge impact on your symptoms?


Sunday, July 3, 2011

I'm still standing

The questions:

Francesca's question: If french fries are called chips, what are chips called?
In Australia we call both french fries and chips, chips. Yep, if that  is any help.
Hannah's question: What are your POTSy essentials when traveling?
When ever I go out whether to school or on holidays, I take my salt shaker and salty snacks. My beloved vegemite! My walking stick, Sir Sticky. My drugs. Not much really.

Miranda's questions: Do you have vision problems?
No, but I do get blurred vision as a major symptom. I am colour blind too.

My question: what is your favourite type of exercise?
For those of you that don't know, I have been a bit of an exercise freak this week. Running, trampoline, weights, pilates, bike. On average doing about 2 hours of exercise a day. My favourite is definately the trampoline.

My week:
It has been good. I had a pots attack yesterday and I have picked up a bit of a cold but doing really well pots wise. I have been going to school four days a week and going to classes and stuff. It's been really good. I feel really fortunate.

Tuesday was my birthday and thanks you guys for the birthday messages. It was a good day and as many of you know, I got a gorgeous puppy called Trixie. I also got some DVDs, the yellow wiggle autobiography and some little odds and ends. My friends got me a gorgeous bear that they all wrote messages on. It is adorable.

So I don't have much to say. It hasn't been that exciting. I picked my subjects for next year and for the HSC they are:
Society and Culture
Modern History
Advanced English
Extension English

I think it will be good. Hopefully my health stays good.


Friday, July 1, 2011

Good News And Bad News...

What a week! And it isn't even over yet! This is probably gonna be a long post, so hold on!

On Wednesday, after begging for weeks to get in, I finally got an appointment at my primary care doctor's office, but I had to see the nurse practitioner. He was nice and listened to me and my parents.  We told him all about my swallowing and reflux problems and he said that I need to go to a gastoenterologist ASAP, because the acid might be damaging my esophagus. I don't think he knew much about dysautonomia, but I explained a little and I think he understood where I was coming from. I even explained about how I might have scleroderma and he even agreed that it could be a possible diagnoses. Before leaving I got some blood work (CBC w/diff, BMP, and H pylori blood test), which I'm so used to. A while after we got home, my mom asked me to grab a lid on the top shelf of our kitchen cabinets while she was cooking and right after I raised my arms, I knew it wasn't gonna end well. I managed to sort of blindly toss it (I had lost my vision by then) at my mom before I completely dropped on the floor. I really hate syncope!

Anywho, I got an appointment with a gastroenterologist (not one of the doctors that I'd prefer) on the 14th of this month, but whatever! As long as I can get some testing done, I don't have a problem. I have a cardiologist appointment today (as in July 1), then after that we're gonna go see my Pap (grandfather) in the hospital (I'll explain that later). Then on the 6th I think I have my consult for my wisdom teeth extraction!

Onto my day... I woke up today (around 2 PM) then my mom had to go to work then to the hospital to meet up with my Aunt and Pap. While she was gone it was just my little sister and I, and she was in her room listening to music while I was in the living room watching Pearl Harbor. I was actually a bit hungry, so I got some pretzels to eat. After a few bites they started getting stuck in my throat (that's normal for me), so I just tried swallowing some, which helped a bit. A bit later after I swallowed I started gagging because it had got stuck again, but this time it was like I couldn't swallow at all. I tried yelling for my sister, but she couldn't hear me, and I honestly thought that I was going to choke to death alone. But after relaxing myself, I managed to swallow it down. That was one of the scariest moments of my life.

And I digress...As you might have seen in Hannah's post, and here, my Pap is in the hospital. In the last few weeks he's been losing weight (25 pounds in the past week) and looked really bad. But last week I managed to persuade him into letting me take his blood sugar and pressure, which were both way too high. I told my mom, dad, aunt and pap that I knew he had diabetes and he needs to go to the doctors before he got diabetic ketoacidosis or went into a coma. He refused to go to the doctors until yesterday, when he was so weak that he couldn't walk. His blood sugar was 1200 (it should be around 100), so he was sent straight to the hospital. He almost coded there (that's when your heart stops beating and you stop breathing), but after some insulin his sugar has gone down to 975. I really wish he would have went when I told him to, because I was right. Thank you guys so much for your prayers, I really appreciate it.

Back to today... I've just been sipping a can ginger ale until now because I'm too scared to eat solids. I've been really shaky, tachy and have had so many palpitation episodes today! I decided to check my sugar a while ago and it was 140; that's too high for just drinking 1 can of ginger ale all day. And I can't recheck it because I'm out of testing strips, my mom is picking them up from the pharmacy in the morning.

Now onto the questions.

Francesca's question: If french fries are called chips, what are chips called?
They're called crisps, I think. At least that's what I picked up from watching so much Doctor Who. : )

Hannah's question: What are your POTSy essentials when traveling?
I usually bring lots of water (when I went on the choir trip I brought a lunch bag with 8 big bottles of water in it), salty snacks, my emergency card & paper explaining POTS, my med alert bracelet (that I always wear), glucose tablets, my blood pressure and glucose meter and wayy more stuff. As you can tell, I'm not a light packer. : P Why don't you just go to a previous post of yours and save your signature from there? Have a good time on vacation!

Logei: I really hope your GI doctor can help you! And I understand what it's like with your eating, minus the vomiting, so I'm always here for you if you need to talk. <3

Rhianne's question: What helps your tremors?
I usually just try to lay down on my right side and I tap out how many times it happens on my leg. It sounds crazy, but with OCD, it helps. I also do that with my palpitation episodes.

My question: Do you guys have vision problems?
I'm nearsighted (can't see distances well), so I've worn glasses for like the past 10 months and I'm extremely sensitive to light, but we just think thats because of dysautonomia and my light colored eyes-that used to be blue.

I really hope next week is better for everyone! <3