Saturday, July 28, 2012

Technical difficulties

Hey my wonderful friends! I just made a whole lovely video for you guys but I did something on iMovie trying to upload and I accidentally deleted it. I guess that it wasn't meant to be, so in advance I shall apologies for my rambling as I have been awake since 4:30am? Watching the Olympics opening ceremony.

I guess that shall be my question: Do you guys watch the Olympics?

My week has been kind of crap compared to last week. However, I ran! For three minutes! Yay! I actually have a good level of fitness, the only thing that stops me is the pots monster. I have been trying to do wiifit every day (or Another form of exercise), to help improve my standing tolerance(so far not working as I had three faints this week! And not hot guys caught me!)

Anyway, moving on. School has been going okay for me. It has been a bit hard with my brainfog but I am actually doing good in my classes for the first time in two years. The other day in Maths I got a question right that nobody else did. Even though I have to work a lot harder then everyone else (unlike everyone else I donthave the luxury of part time jobs or hanging out with friends often) but Atleast the hard work is paying off.

In terms of the other aspects of my life, I got to hang out with my friends on Wednesday after extension but I wish I could do more instead of sit at home and do nothing.

Anyway munckins, I shall wrap up these posts with the questions:

Cheyanne: my personality Type is ETSJ which describes me very well.

Hannah: YES! I have horrible communication issues I swear I must make a terrible impression of myself. I lose thought midsentene and all the other things you mentioned.

Love you forever and always,

Wednesday, July 25, 2012

More GI issues.

My stomach is kicking my butt at the moment. Hahaha. It is back to its normal slow self now. I've been so nauseous and I keep getting the hiccups (gastroparesis thing). On a good day I get about 1500 calories a day, which is not too bad. I am eating enough to maintain a weight between 99 and 101 pounds. My problem is that everything makes me sick, so my diet is pretty much the same day after day. I do not get all of the food groups in. I do not get enough protein and we discovered months ago that my body is taking from the muscle I already have. I am peeing out my muscle. Over the past two years my energy levels have declined tremendously. I know most of that stems from being malnourished. I am not getting the nourishment I need. It is nearly impossible when everything makes me sick, I don't digest meat or raw veggies well, and I have SOOO many other diet restrictions.

A couple weeks ago I had joined this Gastroparesis teen group on Facebook. Most of the girls on there have feeding tubes. I have talked to them about it and they said that they do not regret getting their tubes at all. They still have nausea and other symptoms, but they are able to have lives. They can go to school and hold down a job. Most of them do have underlying conditions as well. That has made me consider getting a GJ tube. If it could help me live a mostly normal life, then that would be great! My POTS could improve also because I would be able to get in enough fluids and sodium. I would still have all of my EDS issues and other dysautonomia issues, but my GI issues are and have always been the worst. I wish I could tell how much I could benefit from it without undergoing the major surgery. I know that the option is always open, even if I don't decide anytime soon. 

Miranda's Question: When (or if) you get blood pooling do your knees hurt with it?
Not really. It usually just hurts below my knees. Oh, and congrats on your college entrance exam! :)

Rhianne's Question: What TV shows do you watch?I watch: Pretty Little Liars, Teen Mom, and Switched at Birth.

I am glad your headaches disappeared! 

Hannah's Question: Do you have communication issues?
No, I wouldn't say I do. I have never been a big talker, and I am not around people all of the time like I used to be. I really don't communicate with very many people except my family and my boyfriend. I do forget what I was going to say quite often, but I don't stutter or any of that. 

I hope you are feeling better from the stomach virus!

Logan: You didn't have a question. I am sorry you aren't feeling well! The picture of the sky from your new house is beautiful. :)

My question: I had a question all planned out, but I had to drive to the store and now I forgot. Um this isn't what I was originally going to ask of my tumblr friends is doing this poll to see if there is a personality link between dysautonomia. Here is the quiz, so if you want to take it and post your results then I will let her know. :) 

My result: ISFJ - “Conservator”. Desires to be of service and to minister to individual needs - very loyal. 13.8% of total population.

Have a great week. God bless!

Shooting Stars

I'll keep this really short, not feeling well.
Christine has asked me to post for her on Tuesdays for the time being, she is really busy at the moment, and keeps forgetting to blog in all the chaos. : P
We have moved to the new house, and it is wonderful, especially the sky. It is so open, you can see so much of it. I tend to go camera happy.

I was up all last night looking at the stars : ) it was amazing, you could see the Milky Way, and all the planets were so bright. And of course there were shooting stars : ). I didn't sleep at all, and in the morning I expected to fall asleep but I didn't. In fact i felt great, but then i tried to go outside later in the day.. and between the lack of sleep and sensory overload i just crashed and was so sick i couldn't even sit up. I eventually fell asleep and woke up feeling a bit better, but it wasn't pleasant : P
I'm too out of it for questions, I'm really sorry. I'll talk to you guys later!

Monday, July 23, 2012


Hey lovelies! :) sorry I'm not super enthusiastic I was feeling zombie-like lol. Here's my video :)


Friday, July 20, 2012

An okayish week...long overdue

Hey guys I actually haven't had that bad a week from memory. After being taken of my 30mg of flouxentine and being put back on 20mg my headaches have disappeared leaving me to think that the culprit was the medicine. How come drugs most of the time cause more harm then good?

I am doing this post on a study break, I have heaps of schoolwork to do, mostly a Biology assignment on Australian mega fauna. You guys would probably find my report highly amusing! I want to get it done today, so hopefully, fingers crossed, I can hang out with friends tomorrow!

It was first week back and I can't believe I only have 10 weeks left before I start Year 12. Ah! Scary!

I had one day off because I couldn't really get up and go. I also fainted on Thursday which really, truly and honestly sucked! My whole year was along that hallway because we are all scheduled to have maths at the same time and I swear everyone saw me go down, embarrassing right? Luckily my friends helped me and this really nice guy helped me get to sickbay.

Anyway I need to finish this report so I shall answer the questions so I can be gone.

Do you have bradycardia? Yeah I have caught my pulse in the 40s which is Absoulutely scary! I have no advice other then stand up.

Do you eat meat and how do you tolerate it? I tolerate unprocessed meat fine however things like sausages, parties etc seem to mess me up a tad.

Do your knees hurt when you have blood pooling? Not that I have noticed.

My question is what tv shows do you watch?
At the moment I watch the news and occasionally Home and Away, don't judge.


Thursday, July 19, 2012

At this point I have no idea what to title this post, but if I come up with one I'll change it :) Anyway my week has been sort of crazy, but I finally took my college entrance exam this week, which I did really good on, and now I have an appointment with an adviser to schedule my classes on Monday. I also had PT (two times this week) and a follow up with the orthopedic surgeon today and seeing as I've only had a slight improvement in my knee pain, I'm getting an MRI (not sure when yet) to check if there are any structural issues; but I will be continuing the PT. I actually broke a sweat today during the session! I've also been working out on my own time and attempting to eat healthier to lose some weight, but I don't know how well that's gonna work. :P

Onto the questions...

Do you have bradycardia, and what's your advice for someone experiencing it? Occasionally I do; I try to do something that'll bring it up (like moving my legs around, or even my PT exercises), but I don't really have advice.

 Do you eat meat? If so, how does your stomach tolerate it? Yes, but I do, but it's usually white meat. I will have red meat on occasion, but I usually feel kind of nauseated after it but that could just be my normal post-eating nausea. 

My question: When (or if) you get blood pooling in your legs do your knees hurt with it? 

Have a good weekend, 

Wednesday, July 18, 2012

school, school, school

My beta blocker has been working wonderfully! I'm soooooooooooooooo thankful. I am only taking a quarter of 25mgs now and I have no side effects. The past couple days I have been doing work, reading, and taking exams for my online class. I feel as if all I ever do is school. Ugh.

My stomach is acting crazy. One minute it will be slow and the next too fast. I've been having gastric dumping...the complete opposite of gastroparesis. I'll eat and my food will come right back out undigested. (gross, I know. Sorry) I am not aware of how much nutrients I am actually absorbing.

Well, it appears to me that nobody really asked any questions.

My Question: Do you eat meat? If so, how does your stomach tolerate it? 

Have a great remainder of the week! God bless. xx

Monday, July 16, 2012

Hey guys, popping in real fast I know it's not my day! I had made a video and posted it but I want to edit it before I repost :) but my question was, do you have bradycardia, and what's your advice for someone experiencing it?
Sorry your popping in on your day, Logan and Christine :) hopefully I can actually edit the video in a timely manner... I'll just put it in this post so it doesn't post on someone else's day. :)
- Hannah

Friday, July 13, 2012

Where's Wally (or Waldo as you silly americans call him)
It wouldnt let me do the cute little video box today. Anyway hope y'all are doing okay. Thinking of Erin's boyfriend, Logan's Dad and Hannah's Mum. <3

Electric Shock Therapy Is Wonderful

Hello readers! As you may or may not have noticed, I've been absent from pretty much everything for like the past few weeks. The main reason is that my internet/WiFi decided to go completely out, so there was no internet until we got a new router. Plus I've been really busy with planning for school visits, vacation and such. 

Anyway, I've been going to physical therapy twice a week and it's awesome. Today (actually yesterday) I mainly worked on my thigh muscles and am doing exercises to reduce the amount of hyper extension in my knees. Each time I get electric shock therapy (I think it's called electrical muscle stimulation) on my knees/thighs, the point of doing this is that when I get the shocks I'm supposed to tighten my leg muscles, which will eventually help with the pain in my knees. On Wednesday I went sailing, and my knees were hurting from it so we kind of kept it easy. I'll put up pictures of some of the exercises on my main blog, so it's easier to understand. 

I have to be up in a few hours to take an exam at college so  I'll move onto the questions.

Do you feel like you are more mature than others your age? Yes, but I still have my immature moments.

If you had a few hours to do anything you wanted without experiencing symptoms, what would it be? I'd want to run, I've never been able to run because of asthma and now dysautonomia, or I'd want to drive without feeling like my heart's going to pound out of my chest.

How often do you feel like you cannot breathe? Every time I get pre syncope, which is more often now because it's so hot outside.

How do you do when you are in the sun? I'm ok, as long as I have sunglasses or I'll get the blood pooling and dizziness like Hannah described.

Do you avoid eye contact when you’re having muscle jerks? I don't really have noticeable muscle jerks anymore, but I tend to get them in the doctors like when they're listening to my heart.

How much independence do you have? Not much, but I don't really mind it since it won't be like that for much longer.

What medications are you on for POTS/Dysautonomia and what dose? None, but I used to be on quite a few. Occasionally I'll take a salt tab, but I have to watch those cause they mess up my stomach.

Have a nice weekend, 
Miranda :)

Wednesday, July 11, 2012

Short post because I'm dizzy and can barely see.

I tried the beta blocker this morning. I noticed a difference in an hour!! Before the medicine my vitals were: 92/62 and my pulse was 119. Afterwards my blood pressure has been around 106/75 and 80 for the pulse. It feels weird, a good weird, to not have my heart race when I stand. I've only blacked out once since the medicine, and that was only a half blackout. The only downfall would be that I am getting side effects from it. I've been dizzy, extremely cold, and my stomach is upset. I've been told that the side effects may stop after a few days of being on it. I'm soooo thankful that it is working!

For my online English class that I am taking I am having to read Great Expectations by Charles Dickens. I have about 250 pages left and not very much time left to do it, since I have to get the class completed soon. Because of my focusing issues when reading and the dizziness I can't see well, so I am keeping this post short!

Oh...and also I went to the pulmonologist on Monday and my lungs are okay. :) It's just the dysautonomia messing with my breathing.

Rhianne's Question: Do you feel like you are more mature than others your age?
In some ways, yes.

My Question: If you had a few hours to do anything you wanted without experiencing symptoms, what would it be? 
I would want to go to a concert because I have never been to one.

I hope y'all have a good week!

Saturday, July 7, 2012

Kissing concrete and miscellaneous adventures

So I was packing for Sydney and I was like "oops! I have to post". I am leaving for Sydney first thing tomorrow so hopefully that goes down well, everyone is going except Dad who is staying to do some DIY stuff and clean out the garage. My sister wasn't going to come but then she decided Sydney sounded better then cleaning out the garage.

This week I haven't done that much actually. I finished an English Essay which I had an extension on and I finished my English Story as well (I take two English courses). I still have Health work to do but I shall do that when I get home.

I got to hang out with a friend on Wednesday which was fun even though I am not up to doing much at the moment. I also go to go in to town on Thursday twice once to go to the gym and the library and the second time I had a doctors appointment. Yesterday, I skyped with Logan which was great. Today, I just cleaned out my wardrobe, packed and layed around home and watched Gilmore Girls (I love that show too Erin, I bought the first season on iTunes like a week ago).

Anyway, as for the stupid doctors appointment I had on Thursday, it was just to get a script filled. My doctor told me though I need to find a way to relax and playing sport would help. He suggested softball.

(FYI, that isn't the stupidest thing he has ever told me).

I am going to answer the questions from this week:
Erin: FEEL BETTER! Your life just seems crazy and I have never had a bone marrow test.

Hannah: Hope you and your Mom and your "smelly" dogs are okay. You asked about going out in the sun? I love the sun. The summer makes me feel better.

Logan: I'm thinking of you guys.

Cheyanne: And you need to feel better soon. I shall make you a bubble eventually. I always feel like I am out of breath and like every week or so get an unable o breath attack.

Quote: start living for something worth dying for-paradise fears

My question this week for you guys is: do you find you are more mature then others your age?
ApprAntly I always have been so it's not a having a chronic illness thing. I am logical, well spoken and assertive, nobody ever thinks I am 16. Haha when I was 14 I went with my parents to the voting place and people were pressuring to vote for their party. HAHA they were stunned that I was only 14 at the time

Friday, July 6, 2012

Pardon Me

Hey all, I recently added some symptoms to the Dysautonomia Symptom list (There are so many I'm sorry! But the list is more accurate now!)
Also i looked at the "What is POTS" link on the Dysautonomia Connection, and I looked at our description and the first half of the page was not accurate, so I re-wrote it based on the information given at the Dysautonomia Connection (Which uses the Mayo Clinic definition of POTS). I quoted my sources with links and I apologize for not noticing or fixing the page earlier!

Thursday, July 5, 2012

Cardiologists are so smart that they are stupid.

Wow, what a week! Last (Thursday?) I was in the ER for my shortness of breath, chest pain, and palpitations. They did an EKG and an x-ray and those came back normal. They sent me home and told me to come back to see the cardiologist there immediately in the morning to do an echocardiogram. They were worried about my aorta possibly being enlarged and or Mitral Valve Prolapse. Those doctors had me kind of worried. My echo from December was perfect, and usually those types of things don't come on that quickly, so it didn't exactly make much sense. I was pretty sure it was the dysautonomia. The next day I went to see the cardiologist who they told me to see. My family and I were all sleep deprived and almost ran out of gas getting there. They put us with a cardiologist who specializes with pregnant women whose babies have heart defects inside the womb! That man noticed that I had been to that facility for an echocardiogram two years ago and that one was fine. He sent me home without doing a thing!! NOTHING. If he knew anything about connective tissue disorders he would know that two years can make a big difference (he didn't know I actually had an echo in December somewhere else). I was so aggravated because he didn't even attempt to help me. He said that I needed to see the other cardiologist that he works with. They wouldn't see me back until August!!! If something was truly an emergency with my heart then y'all might as well start planning my funeral because I'd be dead by then. Before I went to the ER I was told to there if my symptoms persisted because my usual cardiologist could not get me in. Since nobody did anything, I went on in to my original appointment with my usual cardiologist. I told him that the ER suggested that I have an echocardiogram done and he refused to do one. Every time I go into his office he does an echo and the one time someone else suggests that he do one then he won't do it! He did give me a beta blocker. I have not started it yet because my blood pressure has been so low and I hear that it can lower it. Fainting is not something I necessarily want to do right now, so we are waiting. I hope that it works when I do choose to take it. I asked my cardiologist if it could possibly make me faint and all he said was this: If you think you are going to faint, then you are going to faint. Basically the summary of this post is that I have had it with cardiologists lol. 

Today I went to the movie theater and saw the new Spiderman movie and it was great! I didn't get a migraine either. :)

Michelle K's Question: What medications are you on for POTS/Dysautonomia?
I take Doxepin. It is used to treat insomnia and pain. Other than that I am on nothing for dysautonomia. 

Rhianne's Question: How much independence do you have?
What is independence?? Hahaha. I was more independent when I was 10. :|

Hannah's Question: How do you do in the sun?
The majority of the time not very good. My pulse increases tremendously. I sometimes get a rash too, but that is from Mast Cell problems. 

My Question: How often do you feel like you cannot breathe?

I hope everyone is having a decent week. God bless. xx

Wednesday, July 4, 2012

short post

Today was Christine's day to post again, but i was not even able to talk to her today so I don't know how she is doing, Christine if you read this i hope you are ok!

I'm not feeling well at all, the last maybe week i have been getting progressively weak. I have rare moments when i can walk around for a minute or two, but most of today i could not walk around without collapsing so i stayed in bed.
Also my POTS was acting up bad today, i had noticeable tachycardia probably 8 out of every 10 times i stood up.
But i got to speak with one of my rare true and blue friends today : D, and i got to watch a sunset from my bed room window. So my day was not entirely sucky : P

I'm too zombified for questions, I apologize!


Monday, July 2, 2012

Day Switch!

Hey guys, I am now a Monday poster (I, meaning Hannah!), Rhianne and I switched days because Fridays are better with her schedule.

I have still been on the roller-coaster of POTSy land- but aren't we all? :P. I can't remember if I told y'all but my cardiologist switched things up with my meds. He has me on Mestinon and changed my dosage around on my Midodrine (I will write more on that with Michelle K's question), and I tried the Mestinon at the full dosage he prescribed for three days and I couldn't take it. So now (a week or two later- I can't remember lol) I am trying it at 1/4 the dose and am going to gradually increase it. I hadn't even discussed it with him but in the process of getting other questions answered over phone he had already said to half it. So, instead I quartered it, hopefully I won't even need to go to the full dose. He put me on it for GI symptoms, so I'm assuming he's thinking gastroparesis? But he said it will also help my heart.

My pulse has been bothering me lately because it's gone as low as 50, and that scares me and makes me uncomfortable. I find I am more comfortable around 70, and until I had the mess with the Propranolol (I'm assuming my body hasn't reset itself yet, around 3 or 4 years ago with my first time ever taking Midodrine it set me off with high blood pressure, and then I have had high and low blood pressure since), however, I am still getting higher pulses frequently.  I also am on a thirty event monitor since I have been having so many irregular beat sensations. I only have like nine days left and I think I am just finally learning how to use it properly (haha).

Let's go on to the questions, shall we?

Miranda asked... Do you have a geographic tongue? I think I remember us talking about this forever ago, haha, but I do not. I hope things go well with looking into colleges, you go girl!

Michelle R asked... what are y'alls plans for the summer? I am hanging out with family and trying to study and learn things on my own and now I am starting back up on the online School of Biblical Evangelism, its been a while since I've done much with it, so it feels good to be working on it again. Yay for no deadlines! We are also possibly doing a beach vacation with my brother and his family. Another Yay! Congrats on graduating! I loved graduating, so exciting, I hope it has been just a sweet for you, though I know it's bitter sweet!

Logan asked... Does anyone else avoid eye contact during muscle jerks? Y'know, I can't really say to be honest, I don't remember! But I can definitely understand why that was awkward, I think I just kind of hope the person didn't notice Lol. I hope you start feeling better hun and that things improve with your GI!

Cheyanne asked... What part of your head are your headaches/migraines located in most of the time? They are usually the top and back, and can either be tight muscles, burn, or be like nausea in the head. I also suffer from vertigo time to time. And... Do y'all get random chest pain and palpitations like that? Yes, I know it's scary! I could write a long post just on what happened about a year ago that seemed to set off PVC's for me. For me, chest pain, PVC's, and heart burn all seem to run together, at least the feelings of the symptoms can be difficult to decipher which is which. I think it'd be good to see your cardiologist, he might do what mine have done for me and put you on a monitor to see what exactly is happening <3. I plan on looking up the types of EDS and your other diagnoses girlie, hang in there! I wish I had some knowledge on them to lend words of wisdom. <3.

Michelle K asked... What medications are you on for POTS/Dysautonomia and what dose? I am on Lexapro 20mg, and right now I'm adjusting the dose at times because of my heart rate going lower than what's comfortable, and switching between 20mg and 10mg, and I am not recommending that to anyone, I'm doing it on my own out of what I feel to be necessity to keep my pulse from going to low. I am also on Midodrine, 5mg twice a day and 10mg three times a day, so 40mg total a day.  I am also on generic  Mestinon, right now I am starting with 15mg, working my way up to that three times a day, taken before each meal, then if all goes well, I'll add in a 1/2, etc. He wants me to be eventually be taking 60mg, three times a day, so a total of 120mg. I'm sorry to hear things aren't going so well with you lately, and also with your job, I know that must be difficult emotionally with your career having a lot of importance to you <3

Rhianne asked... why did we watch her video? And I started watching it whenever you posted it ages ago, but never finished and then tonight I listened and watched while talking to you, pretty cool huh? And because you are Rhianne and you are awesome and Australian. ;) Also, how much independence do you have? I feel like I am slowly gaining it back, but I still do not have much. I really don't go anyway without one of my parents except once in a while. However, I am starting to do things like walk our long driveway by myself, just typically letting someone know I'm doing it in case I don't make it back up, haha. Things like that- is how my independence mostly works. I'm independent, based on my dependence on my parents- I can do mild things independently, with their supervision or awareness of it. I hope things improve for you girlie <3

Erin, I don't think you had an "official" question, though you did ask if any of us have had a bone marrow test done, and I wish I could give some advice but I have not <3. Wow girl, bless your heart you certainly have had a lot going on. I'm glad your surgery is done and over with and resolved everything it needed too. I hope you can get things figured out to with the MCAD <3. I am so proud of you with your schooling accomplishments! GO ERIN! You have certainly put up quite a fight with your illnesses to accomplish your dream, how amazing!

My question...  How do you do when you are in the sun? Sometimes I love sitting out in the sun, it just feels so good, but it can give me a headache, and there was a time where if I just stepped outside in the summer it was like *whoosh* blood pooling, so I'm curious, do you guys avoid the sun? Sit in it for some D? Etc.
Thanks :)

Until next time... <3


Sunday, July 1, 2012

Why Hello There Friends, It's Been Awhile...

A lot has happened in the past two months or so. I have graduated college and started my masters. Crazy? Just a little bit. I study, go to class, do homework, and make it through. Somehow. My POTS has been under control and pretty manageable for about 6months now, but other symptoms have just been bothering me more and more lately.

I had surgery in May on my nose. My cartilage was falling(due to EDS), I had a 100% bone spur blocking my nasal cavity, my turbinates (I still am unsure what these are completely) were very enlarged, and I had an icky deviated septum (again, because of EDS). The recovery absolutely sucked for the first week until the tubes were taken out. After any kind of surgery, I get AWFUL jaw/face pain. We finally decided that I have trigeminal (sp?) neuralgia. The only way to get relief is to go to the ER and get IV meds. I will never, ever, have surgery around my face ever again. *Just thinking about it gives me shivers...*

Also, I had a tryptase blood test done to check for MCAD/Systemic Mastocytosis. My levels came back elevated! The next step to officially confirm is to have a bone marrow test done. I chose to wait 4 months to be retested and then decide. I just can't come to term of getting a bone marrow test done. I heard it's pretty painful... has anyone experienced one before? I have had such a strong gut feeling of MCAD for almost 2 years now. Constant running to the bathroom after eating certain foods, but I have no idea of the trigger. Rashes. Chemical sensitivity. Allergic/Sensitive to medicines. Heat rashes.Headaches.headaches.headaches.constantly! GI problems since I was a kiddo.Elevated liver enzymes.Eosinophilia.& many more... I have all these random things, but STILL, I feel yet to have a definitive answer. The list goes on.

Anyways, enough about my health. I will graduate with my masters in a year. ONE year from today to be exactly. Added plus? They are paying for my schooling :) I know I can make it through, I know I can do it, but these added symptoms do suck. I am pretty good at putting on a fake smile and making it through. Aren't we all? I will never give up, I will always persevere through illness, no matter what it may be. We are all strong ladies and I am proud of every one of our accomplishments, no matter how little it may be!

I know  that many of you have been having a difficult time lately, but keep your head high. You are so strong! When you think that things can't get any better, there is no where else to look but up :)

Cheyanne: It's good to know you finally got a diagnosis! EDS is NO fun, but it's good to know someone else who can relate :) Take care!!!


I see we have no posters! Nice to "meet" you Hayden and I think Emily has been posting every now and then? Gosh, I am so lacking!

P.S...Logan, I can't wear those shoes either! I just gave up and gave them to friend -- haha

I am just going to answer the questions I can find...I apologize if I miss any! goes nothing

Does anyone avoid eye contact when they have muscle jerks?
-Honestly, my only muscle jerks are RLS (restless leg syndrome) so I wouldn't know. It sounds awful, I hope they get better!

How much independence do you have?
-I am very independent. The only time I will even ask for assistance from anymore (mind you I am extremely stubborn) is to drive me somewhere if I am too off balance or overstimulated. The only other things I rely on are my lovely stools and occasional show chair ;)

What medicines are you on?
-I am on mestinon 12.5mg (3x daily), atenolol 25mg (1x night), protonix 40mg (2x daily), b12 injections, and others not related to POTS. I have to take VERY low doses as I am very sensitive to medicine.

Do you get chest pain/how often?
-I hate the chest pain. I get it quite frequently and at various times! However, after my nasal surgery, I can breathe!! So that has helped tremendously.

What part of your head do you get headaches/migraines the most?
-headaches are typically around my temples, front of head, and the top of head. When I get migraines (usually 1x-2x a month) the pain radiates all around. With both headaches and migraines I am extremely sensitive to light, noise, smells, anything.

What are your plans for summer?
-GRADUATE SCHOOL. and sleeping :) Plus getting my classroom ready.

Do you have a geographic tongue?
-I have never heard of that. I don't believe so. I get sores, but I don't think I have geographic tongue. Interesting, though!

Have you had a tilt-test?
-Yes, I have. A year after I was first diagnosed through a "poor-man's" tilt-test.

Do you have eye problems?
-I have floaters, whatever that means :/

Have you ever gone to or considered therapy?
-I have not. I have considered it at certain times and think it wouldn't hurt, but personally, I hate the stigma that goes with it from other doctors.

What was your favorite high school memory?
-Oh my. I was always sick and in the hospital in high-school and known as "the sick girl". It sucked. Honestly, I wouldn't have graduated if I was at a public school, I would have missed way too many days. I was able to make things up at the hospital and at home.

When you have a day to yourself, what do you watch a marathon in?
-I love television. It's quite pathetic actually. My favorites include: Say Yes to the Dress (the original version), Gilmore Girls, and The Real Housewives :)

What is your favorite song?
-I feel like a complete nerd admitting this, but I love Girlfriend right now. *please note, I do not like justin bieber, nor do I like any of his other songs*

Happy first day of July!! I hope you all are able to spend some quality time with family/friends on the fourth, even if it's just for a tid bit!