Thursday, June 30, 2011

Sorry Miranda- I am Posting on Your Day! :-O

Hey everyone! Last week I felt too POTSy to post! Thank you Francesca for subbing, and sorry Miranda to be popping in on your day, I wanted to do a post before I left for vacation in the morning!

I will start with the questions :)

Rhianne: How do you explain what is wrong with you when people generally want to know?
Good question! It really depends on who I am talking to and how quickly I think they will get overwhelmed. Some people I just tell them my blood pressure is messed up and some people I explain the ANS deal (briefly) and say that it's harder for my body to do the subconscious things that everyone else's does.

Logei: Do clowns freak you out?
This is so random! I love it! And it depends on this one too. Lol. Some of them yes, and some no. I think they'd mostly creep me out if I saw one when I was by night... :P

Erin: Do you girls or anyone use shower chairs?
I do not! I want to get one, but I don't use one right now~ I know this is a POTSy no-no, because of being surrounded in hot water, but I just get in the bath.

Miranda: What do you guys want to do when you grow up/graduate? And how do you think Dysautonomia will affect your choice?
I want to work in Ministry and tell others about Jesus and His amazing love, and help those who no one else wants to help. I feel influenced by the fact that we are some what of "out casts" in the medical area, since most Doctors unfortunately don't understand our health issues, so that encourages me all the more to reach out to those who have a hard time finding a helping hand. All people are valuable! <3.

Miranda, I am praying for you grandfather. Please keep us posted. Readers please pray for her grandfather as well, he is in the hospital :(. <3 

Francesca: If french fries are called chips, what are chips called? 
Haha, I love this question! I love it because I have sat and wondered the same thing! If anyone knows the answer, please tell us!

Okay, on to my week. I actually didn't really re-read (you know how we forget!) you guys' posts to be able to respond to your highlights, but... I am glad to see y'all posting!

This week, well... I'm pretty much very forgetful right now. I go through these periods like this, I had even forgotten I had a graduation party this past Sunday with my family...My dad was talking about a picnic we did on Sunday, and I'm thinking "What picnic?!" Ha. So, yes, very, very forgetful. Last week was a bit challenging, and I had some more challenging moments this week with POTSy symptoms. You know the deal, lightheadedness, tachy, that sha-bang. I've also had some sore muscles and some minor tummy troubles. I am finally almost done my anti-biotic for the UTI's (which was more of a preventative measure until I get more testing done), and the bottle had said it could cause upset stomach problems, and it didn't bother me at all in the beginning, and now it's grossing me out. So, I cannottttttttttt wait!

I am going on a mini vacation (actually, it's our version of a "senior trip") with my parents and a close friend of mine tomorrow through the weekend. I am very, very excited. It's only a two hour drive or so, so that makes it even less stressful than going somewhere three to four hours away like we usually do! The only thing that I really don't like about packing when you're a POTSy, besides having to bend over a lot, is hoping you haven't forgotten a medication or your BP machine, especially since some of those sometimes are last minute things to pack. That leads me to my question, What are your POTSy essentials when traveling?

For me, I'm packing my vitamins, I'm bringing a salty protein purse snack, believe it or not, I'm bringing a fanny pack (if you haven't heard of it, it's like a belt with a compartment/small bag type thing on it) in case I'm to tired to carry my purse (I wore it today to the store with my cooling vest... Yeah, I'm'a start a new trend!), knuckle-cut off gloves for my Raynaud's, and I'm bringing salty and gluten free snacks, plus my BP machine and my 2 liter jug. So, how about you guys? :)

I hope you guys have a marvelous weekend!
- Hannah ( I think I just need to make a new signature! lol)

guest post - Francessca

Hey  its me again  Francessca 
today I'm filling in for Tana  usually my doll posts when I'm sick her name is dizzy dabee if you click the link below it will take you to our blog
where you can read all about me and dabee the dysautonomia rag doll
i don't have much to say so I'm gonna talk about random  stuff
tomorrow is my baby sisters birthday always exciting shes gonna be two
and she can already say my name (Fran -chess -ka)
with a lot of kids my age and adult cant pronounce
shes very lovable and smart

Rhianne's question what helps your tremors ?
 like if my arm is tremoring  i usually use the other arm to hold it down.

 Time to think of a potsie question okay  my question is 
 If french frys are called chips what are chips called ?
weird question but it haunts me

Tuesday, June 28, 2011

It Lives!

Hey guys.
I feel like I just completely wasted the last week. I wanted to make some major improvements in my vomiting, and I didn't, but there's only so much I can do about it. Anyway.
I got a surprise the other day.  I bought a bonsai tree a while ago, but when I watered it the water didn't soak into the soil. It ran down the sides and out the bottom of the pot. The tree turned brown, the leaves fell off, it looked horrible lol.
My dad and I replanted it, and watered it for several weeks but it didn't start looking any better.  My dad told me to give up on it, but on the day that I seriously considered throwing it out..  I looked carefully and saw a tiny little green leaf sprouting! 

Several more leafs have sprouted since then, and its ALIVE lol  I didn't kill it... yet. haha.

To answer our guest's question, I use a board that goes across our tub as a "chair"

 The other question: I used to want to be a musician, and well I still do.  But I've been thing about other things too. I was thinking about maybe some volunteer work like the peace corp or something.

Rhianne's question: Laying down in a dark quiet room usually helps my muscle jerks and tremors. 

Happy Birthday Rhianne!

Happppppppy Happppppy HAPPPPPPPPPYY birthday Rhianne!
I hope you thoroughly enjoy it and that you are not POTSy!
You are one amazing girl, very sweet and intelligent! 15 is a fabulous age.
Enjoy it :)

Ladies, feel free to edit and add your own comment! :)

I would give you a b-day cupcake if i could!  but how about a picture instead ????

- LB

Monday, June 27, 2011

Make you happy

I think I will start with the questions:

Logei: are you scared of clowns? 
I wouldn't say I was scared of them but they are way freaky. I have a fear of elevators and mice.

Erin: Good to see you on the blog! You did a great job. You asked: do you use a shower chair? 
Yes I do. Well it's more like a step stool actually. 

What do you guys want to do when you grow up/graduate? And how do you think dysautonomia will affect your choice? 
Well I want to be a novelist but seeing that is a pipe dream, journalism or script writing. I don't think I will have pots forever and even if I do, they are desk jobs.

And Miranda, I hope things work out better soon I am thinking of you.

Francessa didn't have a question (I probably forgot to tell her to ask one).  You were a great sub though! :) 

My question is: does anything cause/help with tremors? 

I have had them a lot recently. I scared my English class when I went on Wednesday with what resembled an epileptic fit.

So onto my week:

Well early last week we had a lot of stuff for subject. There was a night information session on Wednesday and  I did pretty well pots wise.

I picked:
Modern history
Society and Culture
Advanced English

This is the first year you get to pick all your subjects so it is pretty exciting. My pots has been good too so I have managed to do a lot.

And yeeeeee, it's my birthday tomorrow. I will be fifteen. 

So this has been a good week. The best in months so I am really really happy.

And I have upped my school days to 4 a week and am returning to my maths class (well returned I went today).

Life is great.


Sunday, June 26, 2011

guest blogger -Francessca :)

Hello fellow potsies my name is Francessca aka dizzy dabee
heres a link to my facebook!/profile.php?id=100000213605967
I'm subbing for Hannah, not sure if I'm doing this right lol
okay here goes the first question

How do you explain what is wrong with you when people generally want to know?

this can be a toughie  there is always alot to explain most people stare instead of asking
some times i just say that i pass out easily and that i use a wheelchair to get around
alot of little kids get curious and ask pots is kinda hard to explain to them  my sister whose almost two thought my wheelchair was a giant stroller so we called it that and i let her ride on my lap
when explaining to adults i would just say that when i stand my blood pressure drops

do clowns freak you out?
 that's an odd question
not so much anymore they used to but now I'm a fearless certified babysitter
gonna beat up them scary clowns and pots lol jk
i do admit there still kinda creepy
not gonna say what really creeps me out

do you use a shower chair? 

i do use a shower chair and my mom helps me wash my hair (because even that makes me dizzy )
i often thought about shaving it all off and going bald
shower chair works wonders high recommend especially if your like me and have eds (ehlers danlos syndrome ) and your hips dislocate if you sit down in the bathtub

what do you want to be when you grow up and how will pots interfere?

i want to be a nurse in oncology pediatrics (nurse who works with cancer kids )
who better to help then someone who has been sick with an illness
pots will definitely interfere with standing and fatigue

Friday, June 24, 2011

Teas and Dysphagia/Anorexia

As you can see in the title, I've been having dysphagia (which is difficulty swallowing) and anorexia (which is loss of appetite, anorexia nervosa is the eating disorder) really bad recently. I can barely eat anything now, without gagging, even for hours after (I hate throwing up, so to me it's mind over matter, just like with my syncope). I made a little chart on how my weights have fluctuated, which is a lot, in the past few weeks for you guys to see. My mom thinks that I'm "too skinny" just because my hip bones and ribs stick out  a bit, but to tell everyone the truth, I like it  (as in being small). I used to have a lot of problems with my weight (and health too) when I was younger, so now I feel better being smaller.

But I do have good news, I think I might have scleroderma, I'm 20% more likely to get it because I'm part Choctaw Native American (among other tribes) and being female puts me at 4 times more likely too. I don't have anything wrong with my skin (besides eczema) so I would have to have Systemic Sclerosis sine Scleroderma or Limited cutaneous scleroderma. But I do fit a lot of the symptoms, now my problem is to get my doctor to test for it! 

Anywho, my dad and I went to this health foods store last Saturday to get me some teas (raspberry leaf, ginger, stomach ease stuff) and some other stuff (if you want to see the whole list it's here) like gummy vitamins and protein bars. I tried this one strawberry protein shake today and it was nasty! It tasted like straight up chalk! We went to Walmart too, where I got a Disney Princess coloring pad. You guys should have seen some of the peoples faces in there! They probably thought I was crazy. As of now I'm almost done with Ariel, so I'll post a picture when I'm done.

I'm still behind in homeschool, but I did get a whole book of Bible done today! Only 3 more of those to go! But then I have German and history to do. But other than that I've just been watching TV, mainly stuff with mummies/Egypt or medical shows (like Trauma Life in the ER, not dramas). Now onto the questions...

Rhianne's question: How do you explain what is wrong with you when people generally want to know? I generally say I have a type of dysautonomia, which messes up my autonomic nervous system and that the ANS is responsible for unconscious actions. It depends on who I'm talking to though, if it's one of my classmates I'll say something like that, but I'll go into more detail for a doctor or someone.

Hannah's question:What is your favorite song to listen to when you are in a low place with your POTS?  I listen to a lot of music, but I'll have to give you guys my top 5: 
1) An Deiner Seite (By Your Side in English) by Tokio Hotel 
3) We Are The Champions by Queen 
4) Over The Rainbow by Israel Kamakawiwo'ole 
5) Smile by Michael Jackson 
I have so many more, I'm going to make a POTS playlist for my iPod.

Logei's question: Do clowns freak you out? Not really, unless it's in a horror film or something (which I hate!).

Erin's question: Do you girls or anyone use shower chairs? If you look down on one of my previous posts, I had a picture of the one that I'm getting. But as of now I just sit the whole time in the shower.

My question (it's random): What do you guys want to do when you grow up/graduate? And how do you think dysautonomia will affect your choice? I wanted to be an OB/GYN, but now I'm thinking of being a neurologist with specialty in the ANS.

Thursday, June 23, 2011

Hello :) Guest Post!

Hello girls and fellow followers!

My name is Erin and I am posting for Tana this week. 
(Tana...I hope your symptoms improve enough to get back to your day to day things!)

Here are 5 POTS facts, so you can get to know me a little better ♥

I was dx with POTS officially in June of 2010

I am currently trying to finish up college and am lucky enough to receive accommodations from disability services at my local university

I have tried so many medications, but as most POTS patients are aware - we are very sensitive and can have strong, awful reactions
Currently, I am on: Atenolol, b12, Protonix, whole food supplements, and probiotics
I have previously been on (for my POTS): Midodrine, Florinef, Metoprolol, and Celexa

I am very "proud" and independent. 
& although I have always been sick (since an early age of seven) I do not like to ask for help
Sometimes I forget that I do have limitations and am not on the same playing field as others...
Unfortuantely, this is still a battle that I deal with. 
I want to do everything

I have come to find that cardiologists only focus on the "cardiovascular" effects of POTS...
Currently, I am working with an autonomic neurologist and they see the whole picture

Other Conditions I Have/Had:
Lymphocytic Colitis
Bicuspid Aortic Valve
Chronic Migraines
Vitamin b12 Deficiency 

(I have also had other weird things here and there...)
...don't we all, ha -

Hannah's question: A hobby I have picked up is blogging. I really enjoy expressing my feelings and having this creative outlet. It is a place for me, my feelings, and also a wonderful place to meet new people :) My personal blog is here

As for my favorite song to listen to when I'm in a low place...I really enjoy Jill Palmer's instrumental music. It is very soothing! I also listen to Rachel Sage (Frost), Ingrid Michaelson (Breakable), Staind (Everything Changes) & anything by them!

Rhianne's question: Funny you ask this, because clowns scare the ever living **** out of me! My mom has always had a fear of clowns and I think her fear was passed on to me ever since I was a child!

My question: Do you girls or anyone use shower chairs? I really need to invest in one, but I was wondering if you all had a preference? I know there are a lot of different kinds and we aren't quite elderly, so input on this topic would be greatly appreciated :)

I hope everyone has a "good" weekend :)


Tuesday, June 21, 2011

long week......

Tana! Miss you and hope you're ok!!!
I just saw a doctor (the one my GI doctor wanted me to see), and I was impressed. He knew all about POTS and Dysautonomia, and said that he had seen patients with it before. He was all for IV fluids and such, but he can't actually treat me himself since we were only seeing him as a consult. All he can do is talk to my other doctor, and that just means more waiting. (If my GI doctor does anything at all.)

I had my PT appointment today. I got pretty sick, but it was still fun in spite of it. While I was there they told me about a little boy who was in the pool too. It was pretty humbling. He has some sort of muscular dystrophy, and his body can't produce/use protein correctly. When his muscle breaks down, his body can't rebuild it! I can't imagine how hard that must be to live with. 

Oh, and my dad took me to the park this week. I wanted to share some of the pictures. It was so nice to be out of the house!

Hannah if we get together this summer, we gotta go to this park together (If we're up to it of course.)

 Hannah's question: I just listen to songs that help me zone out!

 Rhianne's question: I usually say a very general summery of my Dysautonomia, like that my Autonomic Nervous System doesn't work properly.

My question, Do clowns freak you out? Random-much I know lol

- Logan

Saturday, June 18, 2011

Who says that you're not beautiful?

To shake it up I am going to start off with the questions.

Logei: how often do you pray?
I don't pray. I am not religious.  Love is my religion. <3

Hannah: What songs do you listen to when you are in a low point with your pots?

Well I am doing this on my iPod so I don't think I can post links and stuff so I will just name the song and the artist and if you are interested just look them up.

Shine on by Jet
Nightminds by Missy Higgins
Lights surronding you by Evermore

I love Evermore. I brought a greatest hits album the other week. I love the lights surronding you film clip with Emily Browning in it.

Yeah I am rambling. La la la. I am delerious, I have a fever.

I also like who says by Selena Gomez but go on youtube and search for the version by Christina Grimmie.

Miranda, did you have a question? No I dont think you did. I hope your nephew feels better soon. Also I know you have been having a rough time so I am thinking of you.

Tana, we miss you! You haven't been well either and you saw some doctor I think.

I know its like a Friday and some people may be like why am I posting on a Friday? And I am like because I can! And I have enough energy now.

It's because this week has been rough. I am really not doing that well. I hate being so, depressing? But oh well.

I haven't been eating really anything other then weetbix and toast. I can't exercise for more then 5 minutes (on a good day). I am just frusated at how much worse I have become.

And I am going back August 1st and I don't want to get even worse.

I didn't do much this week. We had a lot of rain so school was off due to the floods but I went into the learning centre on Thursday.

I did my English half yearly. My English teacher wanted me to do it in the library but I can't walk up the stairs so I was put in this interview room in the front office.

No joke, I did 10 multiple choice question before having a pots attack.

It took me 4 periods to do it. It was like do a bit, pots flares up, lye down, do some more, etc.

But I finished it!

Anyway in the afternoon I met the vision impaired lady for my school district and she was nice. Hopefully I can get some funding under vision impairement.

Friday was a bad day, today is a bad day.

Anyway I need a question, hmm...

Logei and Hannah and you guys always come up with great questions!

How do you explain what is wrong with you when people generelly want to know?

I say my body is like a half filled bottle of water. When I lie down, things are generally fine but when I stand up all the liquid goes to the bottom part of me.

Bye guys,

Friday, June 17, 2011

Smiles for the POTSies!

Hey ladies! First, forgive me if I forget anything, I am so brainfoggy!
My week was...Challenging! I had a stomach virus and as you guys know, viruses on top of our POTS can be disastrous! However, I was able to have a graduation party that my parents threw for me. It was really great to see all my friends, and even though I was in the bathroom feeling like I was going to puke right before I went downstairs to see everyone, it was fun. I sat in our lounge room on the bed and the girls just came in and sat with me!

The next couple days were just me feeling sick. Not fun, but I think it's finally gone, now it's just getting my POTS re-leveled out.

Tonight I went to my friend's graduation party and it was a lot of fun. It felt great to hang out with kids my age outside of my house! I feel blessed :).

Okay ladies, here's the part where I'm going to be very forgetful regarding your posts!

Rhianne, I am sorry that the Doctors aren't understanding what is going on with you and that your stay was so bad :( Your symptoms are classic POTS! You are definitely going to have memory problems when you don't have enough blood in your brain, at least that's what I contribute it to. You have a nervous system disorder, there's so much more to it than low blood pressure and high heart rate. I think that Doctors get confused with POTS, I don't think too many look for the source (Dysautonomia) so much as they do with what symptoms it is causing. I hope that through their experiences with you, it sheds some light on what really goes on with us sickies! Wow did I ramble! lol. I hope that makes sense ;-). (Just a note: I'm not bashing the docs! They are trained a certain way...We need awareness :)

Logan, I am sad that you are throwing up so much again :(. The Doctors really gotta get something figured out for you, that's not humane! <3 I know though, that God is molding you through this and that there is a purpose (for all of you ladies!), so hang in there. I'm glad to hear that it was only one pound lost this week too, but wish it was zero!

Miranda, I'm not happy to hear that you're not doing so well either! We need a cure all GI pill...For all of us! Ahhh... That stinks about coconuts, but you are welcome. I hope Aloe juice helps you! I will also be checking your zoo video out, looking forward to it :). I love the necklace concept, thats so beautiful! As well as the ring. I love it :) I like to write quotes and verses and stick 'em in my Bible and bring with me when I am going to a difficult Dr's appt. Or sometimes I just flip to a verse that I find motivational, one of my favorites is, 2 Corinthians 4:16-18 (*click to go to verse*).

Tana, we miss youuuuuuuuuu!!! <3

I don't think anyone besides Logei had a question... Which was: How often do you pray? I pray everyday at random times and I try to pray at night, thats a nice quiet time. That's just one of the things I love about God...we can talk to Him whenever, wherever! I am by no means perfect, however. I still have my struggles. Right now I am trying to get into a more consistent routine where I just spend time with God. :)

Whoops, I forgot what my question was...Umm.....

What is your favorite song to listen to when you are in a low place with your POTS?  
I think one of my most recent favorites is Josh Wilson's Before the Morning (*click title to go to song*).

Alright ladies, have a great weekend. Keep'a' Smiling :)

(I will find my sig eventually!!!!)

Late Again!

Hey guys, I really need to get myself on track! I'm 5 hours late for posting this time, but I was busy yesterday and fell asleep on the couch...again.

On Wednesday I had a psychiatrist appointment to check up on my med change (last time we upped my Luvox), which has been working well. While I was there I told my doctor about my brain fog and how I can't concentrate much (I used to be able to read a 700 page book in two days, now I can't even read a 100 page one in that time frame) so he suggested that I try Focalin XR, which is generally used for HDHD, but he thought it would work well with me on a low dose. I'm going to try it today when I take the rest of my meds. I'm kind of worried about the side effects, because of my arrhythmia's (it can make those worse) and all my GI issues (it can make those worse too).

Congrats Logei on your self control! I ate pickles with my breakfast yesterday and felt like I was gonna throw up for hours! I lost another 10 pounds from not being able to eat; my theory is that if I do eat, then I won't want to stop or I'll eat something I shouldn't, so I've just been on a mainly soup and crackers diet.

Last Saturday my dad and I took a trip to the National Zoo in D.C, which was of coarse a bad idea. It was so hot there; it must have been at least 90 degrees, plus humidity. We had to keep stopping because I kept blacking out and stumbling around blindly. I made a video of it with a few pictures, so if you'd like to check that out, it's on my YouTube. 

As I was just searching around aimlessly on the internet the other day I found this necklace, it says "this too  shall pass" in Hebrew and I really want it! There's also this ring that has Psalm 73:26 inscribed in Hebrew on it.

Now on to the questions...But before I forget, Hannah, I hate coconuts, so coconut water is not a good idea, but thanks for the tip on the aloe drink.

Hannah's question: What is a skill you’ve developed or a hobby you’ve picked up on since getting sick with POTS? I haven't really picked up anything, but I do love photography. I actually have a huge folder of pictures I've taken on my laptop, I'll put some on here. I don't really have the patience to knitting or crochet. I love making food too, but my mom doesn't trust me using the stove/oven much.

Logei's question: How often do you pray? I don't count or anything, but usually it's spontaneous. A lot of times when I'm "zoned out" I'm just praying. I always keep Psalm 73:26 in mind (My flesh and my heart may fail, but God is the strength of my heart and my portion forever.) I actually want a tattoo of that, as a constant reminder.

Have a good weekend everyone!

Monday, June 13, 2011

don't feel bad... i only know 1 word in French. LOL

Poor Rhianne, I can't imagine how angry you must feel.  Your docs don't know what they're talking about.  I have loss of balance, memory problems, and vision problems too. Those are all Dysautonomia symptoms.  Also, i would be lost without my Florinef. I need my Florinef! I am in love with my Florinef, I would marry it if I could! (Just kidding lol) Really though, my Florinef does wonders for me, I'm so mad that they won't let you try it.
I cracked up when I read about the Vegemite.... see I just had to do my last project for food science, and it was on Australian food.  Vegemite was in my report, and I remember someone described it online as "salt in battery acid." ?? What does it taste like?

Ok, what are some exercises you can tolerate? I love pilates! Its easy to avoid cardio symptoms, and if you do get sick you're already on floor. Its not like you're gonna fall or anything! You can also do certain pilates exercises to create orthostatic challenges too! 

What's a hobby you gained from Dysautonomia? Crochet!

My question, How often do you pray?  I don't pray nearly as often as I should.  Its intimidating to me sometimes, its hard to believe a being as powerful as God cares so much about me that He collects every tear in a bottle.  Pslam 56

- Logan

Sunday, June 12, 2011

Bonjour, bonswaeve. asitto, there goes my french

So guess who got out of hospital? After 12 days of torture. I feel twice as worse as I did before I went. It did me no good, except maybe the physio. I did enjoy the physio.

I have no idea what I said in my last post but basically I was meant to be admitted Monday morning, I didn't get in until Monday night and not even to the ward I was meant to. I was meant to be on the adolescent ward but I was in the burns ward. I got told for the two weeks I would get moved to the adolescent ward but nup, didn't happen.

It was just too much. To go! go! go! and when I got there I realised that they thought I wasn't doing the stuff I was meant to, like the exercise, salt, excetra. Because if I was doing all the stuff I was meant to, I shouldn't be this sick. So they did strength testing on me and I did well! :)

In the morning I was at school and legit, I did nothing except sit there and be dizzy and blind and nauseaus. Then I would go back to my room, have lunch, lie down for 2 hours then go to group which was where they did arty stuff and play games. Then straight after that I did physio where I usually started n the rowing machine then did ball and strength exercises.

When physio ended I would go back to the room, lie in bed, be unable to talk and be so dizzy and nauseaus.

I think I mentioned to Hannah that they tried me on an SSRI. I suggested to my doctor them trying Florinef and she said no because I am not old. ??? The first week my actual doctor was away so I was stuck with this lady and I didn't really like her to be honest.

I think I am reacting badly to my new medication, it has given me headaches and I havve thrown up. I am more nauseaus as well. Maybe it will settle down.

I am going back in six weeks. They are doing psych testing on me from what I gather. They believe that my memory issues, blurred vision and balance loss can't be due to pots. They were like "maybe these could be psychological symptoms caused from the stress of being ill for so long."And I raised an eybrow and was like "really? my first symptoms are ones caused from being ill for so long."

It is just frustating. They were like the other pots people they have had haven't been this sick or had those symptoms. POTS CAN AFFECT PEOPLE IN MANY DIFFERENT WAYS AND AT MANY DIFFERENT LEVELS!

It is frustating. But you guys get that hey?

What is the craziest thing you have done because of your dys?
Nothing as crazy as you! Probably just forgetting people I know well because of brainfog. Stupid brainfog!
What are some food items you use to treat ailments?
Just salt really. I eat a lot of vegemite which I think helps with pots because of the high salt levels. I try and eat a healthy diet too. I also don't eat caffiene so no choclate, coffee or tea.
I dare you... to hug somebody today!  the world needs more hugs.... :P   
The reciever of this was my hospital buddy, a two year old. He was from New Caladonia I think. He was very cute and only speaks French. So there is there title explanation. Asitto means sit by the way. He was doing IV stuff through his chest port so he had to stay still but he wanted to party so I was like Asitto and he was like no! and I was like I can't believe I am arguing with a kid in french.
Do you find that you are more susceptible to infection then before you developed pots?
Not really, I guess I am more isolated since having pots. I do find I am more sick with colds and stuff though. I have only had two colds since September but I was so sick with them. They lasted for like a month or something.
The sweatshop challenge
Sounds interesting Logei, not up to googling though. I just woke up.

What are some exercises you can tolerate?
I have a recumbent exercise bike which I can use for about half an hour now. In hospital I did physio where I start using 1 and 2 kilo weights, doing ball exercises and using a rowing machine. It helps! Exercise people. I see an exercise doctor too. She is great.

What is a skill you’ve developed or a hobby you’ve picked up on since getting sick with POTS?
In hospital I knitted a scarf, it is purple. That was the first thing I have ever knitted in my life. When I was getting discharged, I went to one of my favourite nurses and I was like "can you show me how to cast off please?"I had to finish it before I went home.

From Rhianne

Saturday, June 11, 2011

A Late Friday Post...

Hola Chicas! Blogspot wasn’t working last night, so this is late (This was written yesterday so I hope it doesn't confuse you!)! My apologies J. My week was…um…Well, I seem to be having a hard time remembering a lot of things this week! So, I’m really not sure how to update, haha. I’m not feeling so swell, yesterday I had a little buffet of symptoms, and today I’m a little better but still tired, tummy ache-y and headache-y. I had a Dr’s appointment this morning and it went alright. It wasn’t bad or awesome. Thankfully though, they were willing to work with the fact that I had Dysauotnomia/POTS. I enjoyed that fact. Though we are going to be having some upcoming tests before I get too many answers.

Oh! I remember… I had a Neurology appointment on Tuesday, and the Neurologist was fabulous. He said he doesn’t have all the answers but that he’s going to try and find me an autonomic specialist. I was so excited over that. I enjoyed his honesty and his willingness to step beyond his area of expertise and try and find someone that can help. He’s one of a kind! He was also personalizing the appointment to me. He said he knew the definition of POTS, and he didn’t want that from me…He wanted my definition of POTS (what it does to me), and I also appreciated that because the Doctors that do know what POTS is seem to be under the misconception that we all experience the same symptoms and to the same severity. You guys already know that from experience, unfortunately.

I’m happy to see Miranda and Logan’s posts! But Tana and Rhianne, you are missed <3.

On to the questions we go!

Logan, first, I am glad you are getting back into your music! That is phenomenal! Very exciting to be able to get back into an old passion that you have been able to enjoy. Live it up! I also hope PT continues going well for you! Annnnnd, I hope you continue improving. Every little bit counts!

Your challenge: Investigate sweatshop use in the brands of clothing you buy: I so appreciate this challenge! I wouldn’t have thought of this and it’s awesome that you are bringing awareness to it! I plan on doing some research on it to do what I can!

Miranda, how about them rollators?! Lol. If you find anything awesome, definitely let us know. I hope your reflux starts backing off! I definitely recommend coconut water, and today I had some aloe very drink (juice) when I had stomach pain and it soothed my stomach. It tastes good too! But start in small quantities…

Your question: What are some exercises you can tolerate?: Yes, you are right about the pilates! For the time being, I avoid too much cardio until I build up more strength. Exercising has really helped so much. I’m starting to take walks now, and rode a bike (not a lot though!) the other week for the first time in over two years. Takes time, but we can get there!

My question: What is a skill you’ve developed or a hobby you’ve picked up on since getting sick with POTS? I seem to be enjoying photography lately, and I’m curious as to what are some things you’ve guys have picked up that you can do with your Dysautonomia/POTS?

I can't find my signature :(
~Hannah :)

Friday, June 10, 2011

A Few Hours Off..

Where I am it's already Friday, but only by like an hour so I thought I'd still make my post!

I do have some good news, I go to my cardiologist on July 1 then I go to my oral surgeon on July 6. I'm already on the cancellation list for my cardiologist since I really need in, but no one has canceled. I think he might put another monitor on me, since I keep having near constant palpitation episodes and I can barely stand. The oral surgeon is just a consult, to discuss how he's gonna do my wisdom teeth extraction.

My appetite is still as good as my one year old nephew. I can can only tolerate soups and small sandwiches without feeling terrible after. My sleep is messed up too, I stay up all night long then sleep a few hours through out the day...I should really get back on a schedule. On Wednesday morning I was actually hungry, so I called my Pap and we went out to breakfast. : ) It was really nice to go out with him for a while, even though it was 90 something degrees at 8 in the morning.

If you've seen my personal blog, you've seen that I'm looking up wheelchairs. I really need/want one that I could use every day, not just a standard one, especially since I have to go out a lot with school and everything. If you have any suggestions, feel free to comment. I was also looking up shower stools and I found this really cool one. I'm gonna see if any where else has it cheaper before my dad buys it, but it's so cool!

It swivels!
I don't really have more to update so I'll move on to the questions/challenge.

Hannah's question: Do you find that you are more susceptible to infections now, than before you developed POTS? I've always had a really weak immune system, so not really. If there's something out there, then I'm gonna get it. Strep throat,  bronchitis and Coxsackie virus seem to love me.

Hannah's other question: What are some food items you use to treat ailments? I don't use any, but I really like my mom's homemade chicken noodle soup, grape juice and Pomegranate Blueberry V8 fusion. I can't drink acai juice because apparently it gives me palpitations. 

Logei's challenge:  investigate sweatshop use in the brands of clothing you buy. I love Charlotte Russe, but I get my clothes at random places, so I decided to research Charlotte Russe. Apparently they are one of the top 5 stores that use sweatshops. There are pretty much no places where I live to buy all sweatshop free clothing, unless you make your own clothes (and that's not happening, I like things that are too high fashion).

Logei's other challenge: Hug somebody today. I hugged my nephew and my mom.

Rhianne: I really hope that the hospital is treating you good! I watched a special on Australia today, just for you!

Tana: You haven't posted in a while so I hope you're doing ok too!

My question: What are some exercises you can tolerate? I know Hannah does Pilates, and the only thing I can do is swim.

Have a good weekend everyone!

Tuesday, June 7, 2011


Wow I'm glad to hear that Hannah is doing better, but I'm sad that everyone else is feeling awful..... We all have our ups and downs right? 
Today my cardio symptoms seem to be a little worse than normal, but my tummy seems to be less touchy then yesterday, so I'm going to try drinking tons as much pedialyte as I can. I really need the fluids!
I have physical therapy tomorrow, and I can't wait! Overall I think PT has been helping with my POTS a little bit, and it will wonderful to get out of the house! I almost never need to use my wheelchair anymore too. 

To answer hannah's question : Yes I am more prone to infections, also if I get a cut it takes forever to heal to.

My challenge for this week..... investigate sweatshop use in the brands of clothing you buy!!!  Forever 21, Abercrombie, Holister, American Eagle, Aerie, Gap, Old Navy, Banana Republic, Walmart, Aeropostale, Billabong, Nike (and lots more)  have all gotten in trouble for sweatshop use.

: )

Friday, June 3, 2011

For My Fellow Dysautonomiacs:

I'm really sorry I haven't updated, I totally forgot and I've been feeling really bad. I wrote a post on my blog to explain, you can see that if you'd like instead of me writing all over again. Love you guys!

24 Hour Holter!

My week has been pretty much uneventful. I've been doing really well other than some set backs from the infections I keep getting. I got to feeling sick two nights ago, and again last night (but overall not too, too bad)- but I've done A LOT today. I went to the cardiologist, then hung out with a bunch of kids, then went to dinner. A lot right?!

The cardiologist put me on a 24 hour holter because I've been having these weird tachy/poundy sensations. Fortunately I'm already past the half way point of getting to take it off! I'm curious to hear the results, which may be two weeks away because of the Doctors taking a vacation (they deserve it!), but I'm curious to see if it's really my heart or weird GI sensations (I've gotten those confused in the past!).

I'm heading off next week to a hospital that is suppose to be familiar with Dysautonomia and the following day I am seeing a Urologist. I've been a while with not having to see any specialists so it's weird now seeing them like BOOM BOOM BOOM :). I think it's been at least a month and a half!

I wish this post was more interesting guys! I've fatigued and kind of blank brained! :-O.

Logan, haha my parents were the receivers of your dare, except... I forgot you gave a dare :-O. POTSy brain! =p

Rhianne, Cheer up buttercup :) Things are gonna be okay! Just hang in there <3.

To Miranda and Tana, I missed not seeing your posts! I hope you two are alright <3.

Question: Do you find that you are more susceptible to infections now, than before you developed POTS?

My Dysautonomiacs need to feel better...Please <3.
Have a great weekend!

Welcome to Crap City: population us

Check the title? Why do I feel like that you ask? This is so crap, excuse my language but rah! This rehab program is going horrible. I feel worse then I did before. A lot worse. Legit, I can't even sit up properly for longer then say 5 minutes without feeling crap.

My day is simple, I wake up, have breakfast, then shower, go to hospital school, come back to the ward for morning tea, then back to school come back at lunch, after lunch there is something called group, where they do art and stuff, that is my favourite part of the day because I feel the best then, then as soon as I get back from the ward, I have physio and that kills me! I am usually out and about from breakfast to dinner.

I don't/can't do anything in hospital school. I am usually blind. Nor do I accomplish much in group.

And I wonder if anyone from the hospital will read this, I don't care. I don't like my social worker.
You need to stop being so pestimistic and stop thinking that you will be sick for a few years. Stop whinging, your standing test was better then last time so you are already on the mend.

Then he asked me to do a mood test and asked my motivitation level for getting better.

My standing test was a tad better and if they did it any other time in the day it would have been a lot worse.

WTH! Do you think it could be anywhere under 100%?

So yeah, I am feeling like crap. The nurses don't believe my measurement and retake them until they get one they like. I am just like, my pulse can go over 150 on standing, my body temperature does weird things.

Anyway I just thought I would check in. I'll do a big post and answer all the questions when I get home (and get my puppy).

I havent got my sig by the way, I am on a laptop. So bye guys from Rhianne

Wednesday, June 1, 2011

I Almost Stepped On A Turtle!

My blood pressure has been dropping like crazy the last week.  It's making me feel awful, and the heat isn't helping. : /
In spite of it all though, my dad took me out for a little bit today. We went to another park, it was dead quiet, and cloudy so it wasn't bright. It wasn't too hot either, which was nice. : )  It was the smallest park you ever saw, which is good so we couldn't wander far from the car if I got sick or exhausted. I almost stepped on a tiny little turtle too. It surprised me!  I picked it up and let it go.... it was so adorable!

 What a cutie huh?

Hannah asked  "What are some food items you use to treat ailments?"

I find that some drinks and juices rich in antioxidants seem to help my brain fog, noticed it first when my dad brought me home some acai juice to try.

How about a dare today? I dare you... to hug somebody today!  the world needs more hugs!