Wednesday, December 26, 2012

Merry Christmas Guys!!

I hope you all had a wonderful Christmas! I wasn't feeling good most of the time, but I got to listen to a Christmas Eve teaching online from my church, pray, open presents with Hannah over skype:

And make cookies with my dad. (I got to taste a little frosting at least, lol)

Also I was really hoping for snow, since we haven't gotten much yet this year.

I got my wish! I even bundled up and went outside on the deck which was covered in snow for about 3 minutes. (Btw Hannah, your scarf looks wonderful with my coat! lol) I felt sick for hours afterwords, and kind of worn down the rest of the day, but it was worth it. Sometimes just for the sake of my sanity I need to go outside, even if its just for a few minutes, regardless of whether it makes me sick or not.
Isaiah 9:6 

For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.


-Merry Christmas! 

Monday, December 24, 2012

Happy Christmas!

Hey lovelies! Merry, Merry Christmas! I have not been feeling well but my Christmas Eve has been lovely, and to our Aussie bloggers, I hope you guys enjoyed your Christmas! I got to see some of my extended family and that was amazing.

Otherwise I am hanging in there.  I wish I had more to post on :).  I wanted to post a picture but I'm having difficulty doing that from my ipad but it snowed on Christmas Eve, how amazing! White Christmas, Whohoo!

There were no questions but Cheyanne, I am glad you will get to walk around for your birthday, how amazing! I hope things improve with your GI issues and doctor situation!

Logan, keep hanging in there girl, I hope you really enjoy your Christmas and start feeling better <3 nbsp="nbsp" p="p">
To everyone, have a lovely day tomorrow!

Wednesday, December 19, 2012

December 19, 2012

Sorry I haven't posted the last couple of weeks, the last two Tuesdays have been busy, and by the end of the day I was just sick and exhausted. I'm not feeling very good right now either thanks to an unusually long period, so I'll keep this short.
My sensitivity to touch has been really bad on and off the last couple of weeks. I'm even resorting to wearing socks (which I hate) all the time just so that I can't feel the carpet under my feet. I can't stand the feeling of the carpet, or the towels, most of the blankets, my dad's sweatshirts, the reclining chair in the living room, or the hideous scratchy pillows that came with the couches. Half of the things in the house I can't touch, and its driving me insane!
My G-tube is still doing fine, although there is a lot of overgrowth of granulation tissue. We have an appt for later this week, hopefully my GI doctor can take care of it then. We need to make an appointment with my primary doctor too, because I got my period 2 weeks ago and it hasn't stopped yet.
I miss you guys. Hope to see some of you posting again. 


Wednesday, December 12, 2012

It's Cheyanne!

I am FINALLY posting. I kind of took a little break being that nobody else is really posting. I have been doing okay, I guess. Last week was beyond stressful with finals and such. My grades came in today and I got an A in my first college class! Yay!! My dysautonomia symptoms have been rather calm, except for a horrible episode I had a few nights ago. All of a sudden my blood pressure shot up along with my pulse. The highest I caught it was was 170. If it got any higher, my mom said I needed to go to the ER for fluids and tests. I felt like I was going to die to be completely honest. Hahaha! I had not had a bad episode since being on my heart medication.

My GI issues are still present. The last GI doctor I saw was a complete joke. At the beginning of the appointment he was telling me that I need a therapist and that I did not have gastroparesis and that had an eating disorder.  The funny thing is that his facility diagnosed me originally. Weird. Towards the end I needed an NJ tube! Lets just say that I never went back to see him. I don't know what changed his mind. I saw my PCP for an opinion on the NJ. Some labs were ran and they were all fine with the exception of my iron (it's always bad). That is only by the grace of God because I hardly eat anything. When I do, it usually isn't very nutritious. Anyways, I am losing more weight now so we scheduled an appointment with my GI doctor closer to home. I am wanting her to do a smart pill test. I have heard it is more accurate than the gastric emptying scan when diagnosing gastroparesis. I am kind of excited to see her because it has been awhile. On the other hand, I don't want to go.

Since the last time I posted I have gotten knee braces! They help tremendously. :) I am so happy. My birthday is coming up and I can actually do something that involved lots of walking. The orthopedist said that I am hyperextending my knees and aggravating all of the tendons in that area. He ordered the braces to help with that. I am also in the process of getting fitted for ring splints. The joints in my fingers are not wanting to stay in place.

Logan: I am happy to read that you are liking your tube and that the surgery did not worsen any other symptoms!

Hannah: How is the school going? Learning Hebrew sounds amazing! I wish you could teach me to crochet. :) It seems like fun to do when feeling ill. I am terrible when it comes to crafty things. How do you manage Christmas shopping with your Dys? My dysautonomia usually doesn't affect me all that much (except for fatigue) when shopping (most of the time lol). I make sure I am prepared with fluids and compression hose because heart problems always tend to come out of the blue for me. Joint pain and other EDS stuff is the big thing for me that makes shopping hard.

Wednesday, November 28, 2012


posting late! I was so tired yesterday, sorry.

I've had my PEG tube for about 10 days now. I think I like it better than my NG now that the pain is getting better. Overall it went pretty well, I didn't get sick from the anesthesia, and for the most part the doctors and nurses worked really hard to keep things quiet for my sensitivity issues. They even let me wear earplugs during the surgery to help me with noise in the hallways, when they were getting me ready, and so I would have them when I would wake up. Having a private room helped alot too, I just had to cover my ears or wear ear plugs when the alarms on my IV or feeding pump went off, or if a nurse or doctor came in and was making noise.
The big problem was I felt more pain than I should have, because of my sensitivity to touch. All the doctors and nurses agreed that I shouldn't have been feeling as much as I was. Some of them seemed to understand right away when I explained about my Dysautonomia, my sensitivities in general, and my sensitivity to touch. I tried going into detail, telling them that I'm usually so sensitive to touch that I can't wear jeans without something underneath them to protect me, and that in the past I have had big problems with the wind blowing on my skin, or the water in the shower making sick. To be honest with you guys, my sensitivity to touch is something I struggle with alot more than my family seems to understand. I have a hard time usually even touching the carpet on the floor, using a washcloth to wash myself, or sometimes even picking up everyday objects like a plastic bag, my feeding tube backpack, or a pair of socks. Some people really did not seem to get it at all though. It was like everything I said just went in one ear and out the other, and it was really frustrating.
Mostly right now I'm just extra exhausted on top of all my usual symptoms, especially since its even harder for me to fall asleep than usual. I normally sleep on my stomach or my side, but I won't be able to do that for a little while. I read that you can lay on your stomach with a G-tube once it heals and everything, and sleeping on my side shouldn't be a problem once it heals either. For right now though, I have to try to sleep on my back. It takes me hours to fall asleep when I'm laying on my back, I feel so uncomfortable, and like I don't know.. unprotected or something. Its like I have to protect my stomach and I can't relax if my stomach is all exposed when I'm laying on my back. On top of that is my usual insomnia, and I normally can't fall asleep till 3 to 5 or 6 in the morning. On rare occasions, because of my insomnia I might not fall asleep at all until the next afternoon. Usually my insomnia isn't such a big deal, I just have a crazy sleep schedule. Like I might fall asleep at 4:30 in the morning, and then wake up at 1 in the afternoon. Now even when I can fall asleep (between my insomnia and not being able to get comfortable) I just keep waking up every 15 or 20 minutes or so, because its so hard for me to sleep on my back. I feel so zombified most of the time.

Hannah's question - I mostly make things by hand, I don't really go Christmas shopping. For the most part I only have to worry about giving gifts to my immediate family (my parents and grandparents) so its not such a big deal. Aside from you I don't really have any friends that I exchange gifts with anymore.


Monday, November 26, 2012

Hello, Hello!

Hello lovely ladies,
Logan was the only one that posted, and no questions.
Logan, I know you are having a tough time with your G-tube, but keep hanging in there and pressing on, I know you seem to be recovering bit by bit each day :).

I hope those of you in the U.S. had a lovely Thanksgiving, I did!
Usually I am sick on Thanksgiving and Christmas (something about this time of year I guess!) and I was excited that I managed fairly well on Thanksgiving, what a wonderful treat! I got to play with my baby cousin quite a bit which I thoroughly enjoyed (though I worked up a sweat- lol).

Right now I'm just taking each day as it comes, trying to make use of my time. I right now am just focusing on School of Biblical Evangelism and trying to learn Hebrew, as well as working on different projects with crochet. It really does help to accomplish things, even if they're little things, it inspires you to keep trying to do more :). The "trick" I guess, is to learn that it's okay then, on the days you can't accomplish anything!

I am having more fatigue it seems as well as tummy woes that since about the day before Thanksgiving I believe. But they are not too bad so that's great:).

I got a bit of early shopping done for Christmas, so I am really happy about that. Stores are crowding since black Friday and again, I'm usually not my best this time of year, so it's nice to have a chunk of it out of the way. I cannot wait to give them to everyone! :).

I hope all is well with those who haven't been posting <3 p="p">
Question: How do you manage Christmas shopping with your Dysautonomia?

Until Next Time...

Wednesday, November 14, 2012

Miss You Guys!

Hey guys, sorry I skipped last week, I really wasn't feeling good.

Hannah: my hobby is pretty much the same, knitting and crocheting. Usually, even when I'm feeling really sick and I'm stuck in bed or on the couch I can still manage to knit or crochet, especially if the project is something easy. I always have several projects going at a time of different difficulties so that I don't get bored or frustrated, and so I at least have 1 easy project to work on when I'm not feeling up to tackling something lacy/complicated.
I also still really love music and I miss playing my harp. I miss playing piano and flute too for that matter, but I haven't been able to play flute since I got sick because I'm so sound sensitive. And I can't really play piano or harp very well, because no matter how hard I try, I can't memorize sheet music.  I can't seem to get the hang of playing by ear either because that also involves memorization. To play by ear you have to memorize all the different sounds the keys/strings make, know what sound you want, and then what key/string will give you that sound. I try to play sometimes though, but the truth is I only play on rare occasions. Since I can't really play anything at all except really simple stuff like "Twinkle Twinkle Little Star"... I feel like there's no point, and its so frustrating sitting there useless in front of such an amazing instrument like a harp.

Not alot has happened since I last posted, but my G-tube surgery is scheduled for the 19th! So next week is gonna be a little exciting I guess. Or maybe chaotic would be a better word lol.

- Logan

Monday, November 5, 2012


Hey lovely people, no one has posted since my last post, so this will probably be short :)

Note: please excuse errors, writing from my iPad :p

I've been having my ups and downs but today I am please to say I've accomplished A LOT more than usual, though as you guys understand, I battled through POTSiness, headaches, bad headaches, upset stomach... Y'know (though I think I am actually sick with something viral) however, I still managed to get up earlier than usual (yay for saving an hour, though it gets darker earlier lol) but I;

Helped a child with homework, did some of my own work, crocheted (almost finished a scarf I am working on!), helped my mom with daycare, went with my mom and the rest of the crew we had here to pick up dinner, then went back out to two different stores, oh and I exercised today. I am expecting a crash, I don't know when, hopefully never :). (I feel somewhat accomplished today, I feel the need to share my excitement!).

I hope the rest of you ladies are well (I'm shocked I remembered to post! Yay!) and hanging in there. It is so cold here! I love bundling up (so cozy!) but adjusting to indoor temperatures I feel is going to start to be a challenge, in the beginning of the day I was fine but then coming in (plus the wood stove would have burned even longer) out of the cold my hands are getting hot and stuff and as odd as it sounds, I pretty much know if my hands are hot, I will most likely get POTSY, it's one of my indicators. Sometimes I like Reynauds for the simple reason that it can keep this from happening too much ;) anywho, I will let my previous question stand until we get some more posts :)

Until next time...
<3 hannah="hannah" p="p">

Tuesday, October 30, 2012

Hey ladies! Long time no post! I seriously keep forgetting, and forgetting that Rhianne and I switched days, I'm so sorry!

I've been feeling like I'm going slightly down hill again, but I guess you could say that's to be expected with this time of year, just disappointing as you guys know. By we preservere indeed.
It's been a crazy day with Hurricane Sandy but things should be calming down soon, thankfully we didn't get anything too bad. But that leads me into one of the questions...

Logan wanted me and Cheyanne to explain how storms make us sick. For me, I usually get headaches/sinus stuff, plus extra POTSy, as of lately I can get bradycardia, as well as these episodes where I gt headaches and one side and/or other random parts of my body go weak/numb. I don't entirely know how to explain it but it also feels like there's just this certain feeling you get... I hope that answers your question! Also, about what Christine was referring to with clothing, I think that might be what's called "Under Armor" but I'm not sure. There are also thermals! You also asked about dreams, the nightmares sund horrible, I'm sorry to hear about them. I really don't usually have nightmares, but occasional bad dreams and just weird dreams (not good or bad), sometimes they are vivid (if I understand what is meant by that) but usually their dreams that I just forget, unless its a bad one, but a nightmare for me is rare.

Cheyanne didn't have a question but I hope your woes slow down girl and things ease up!

I send my love to all of you guys, excuse the fact that this is like short and probably weird lol, it's 1AM on Tuesday :p. Logan reminded me about posting.

My question is, what's something (like a hobby or skill) that you do, that makes you feel you've accomplished something when it's difficult to do much at all? I've been into crochet and sewing lately and even if I can't do anything else in a day if I can complete a project I feel like I did something with my day :)

Thanks for reading :)

Wednesday, October 10, 2012


Sorry I'm a day late, I really wasn't feeling good last night, I had a long day and I totally crashed in the evening.
I really miss you guys, I hope you start posting again soon!
Cheyanne, I'm so sorry to hear about your blood sugar! we are actually thinking I might be having blood sugar problems too of some sort, but we aren't sure. Sometimes when I have something really sugary like a popsicle or when I chew alot of sugary gum, I get nauseous, I get a headache, sometimes I even get dizzy or my vision goes blurry. But its usually over really fast.. anywhere between 15 seconds - 2 minutes and then its all over. Really that's it! So its seems weird that my body can correct the problem so fast, I don't know if I'm actually having blood sugar problems or if I'm just a little sensitive to sugar. Also the sugar from fruit doesn't bother me, so if I drink a little fruit juice or if I make a popsicle from fruit baby food (instead of having the store bought ones with refined sugar in them), they don't bother me. And sometimes my tolerance to sugar gets better and sugar just makes me feel.. gross.... I think that's somewhat normal. I think alot of people feel kind of sick or gross after having something really sugary.
Anyway, we aren't sure whats going on yet with that at all.

I finally decided to have the G-tube surgery. I'm not sure when it will be yet, my appointment is next week and because I'm 18 now I guess they have to explain everything to me all over again and then I have to sign consent forms. I find that first part really silly for some reason. Its like I became stupid when I turned 18, and so they must re-explain the surgery to me. I know, I know, that's not the reason, but it just sounds like it lol.

My hair continues to fall out. Today I woke up and there was shed hair all over my bed, all over me, and of course a nasty amount came out when I brushed it. Some days the amount that comes out isn't so bad, and other days like today it comes out in handfuls, but either way I shed a lot every day. Also my body hair is thinner and grows much slower than it used to. And there are some places like my legs where there are large bare patches of skin where hair isn't growing at all. My primary doctor said it was probably either from my weight loss or my diet, because I have bad days all the time where I can only have clear liquids. Usually I have at least 2 of these days a week. But we are still waiting for my blood tests to come back. And I would still really like to know what these strange patches are on my skin. They kind of freak me out a little, mostly because I have no idea what they are or why they only appear on certain places on my skin.
On a happier note though, I wish you guys could see the sunsets and sunrises we have here at the new house. The other day it looked like someone set the clouds on fire! But its hard for me to take pictures of them when I'm not feeling well, and now that its getting colder too, I can't always just go outside whenever I want.
Oh that reminds me, Christine from our blog told me that runners wear special clothing in the winter to keep warm, and she said I should ask someone about it. I think the clothes she was talking about are skin tight which means that I could wear them underneath my sweat pants and coat ect.. If I wanted to try to go outside. The winter is the hardest time of the year for me just because I can't even go out in the backyard, and all I can do is look out the windows.  Bundling up with normal winter clothes isn't enough.  Sometimes I get sick right away from the temperature change, and sometimes it takes a minute or two from being out in the cold, but I always get sick either way. But maybe if I wore the clothes Christine told me about underneath, it would help. Its worth a shot right? I will have to ask.

Cheyanne and Hannah, can you guys explain to me how storms make you sick? I know alot of people with Dysautonomia who say that the weather (especially storms) make them sick, but since I don't have that so much, I don't really understand it. Thunderstorms make me sick sometimes because of the noise and flashing light, but usually I just wear earplugs and/or sound mufflers for the noise and I go some place in the house where I can't see the flashing light, and them I'm ok. Also temperature changes can make me sick, so I struggle more with certain things in the summer when its hot, and in the winter when its cold, than in the late spring and early fall when the weather is perfect and its not too hot or too cold.  But I think its something more with you guys, so what is it exactly?

One last thing though, I wanted to talk to you guys about nightmares. Nightmares and vivid dreams are actually a Dysautonomia symptom believe it or not. I'm not sure how it works, but it is on the symptom list nonetheless. To be honest with you guys, at least 90% of my dreams are nightmares, good dreams are rare treats. And sometimes my dreams are extremely vivid. I'm not sure how to describe this.. but sometimes I'm like completely conscious in my dreams. Like I can think very clearly, and I actually believe that I'm awake. Sometimes when I have vivid dreams, in my dreams I can think and remember things even more clearly than when I'm awake. In my vivid dreams I can easily remember peoples names, places, do math in my head, remember recipes, numbers, and music. Its really weird! I think maybe this is because I'm laying down when I'm asleep, but when I'm awake I'm upright (sitting or standing) which means because of my POTS I don't get enough blood to my brain. But I have no idea really so I'm just guessing here.
I guess I was just wondering how many of you struggle with constant nightmares, or if any of you have really vivid dreams sometimes? Especially if you can think clearly in your vivid dreams, but you can't when you're awake. I'm not sure why I'm asking this now because most of you aren't posting, but I'm just curious.

So I'll talk to you guys next week.

Jesus loves you!


Thursday, October 4, 2012

Blood sugar catastrophe!

Hello y'all!! Sorry I missed last week. I've been struggling balancing my classes and being ill. Before I get into all of the negative issues health wise, I do have some good news to share! :) Although I have been having difficulty managing, I am doing surprisingly well in my college class. I got a 99 on my first presentation, a 95 on my first essay, and was one of the 3 people in the class who got an A on the quiz. She had myself and the other two people stand up in front of the class for a good 15 minutes. I didn't feel POTSy at all!

During the past month or so I have started to feel some blood sugar issues. I was assuming they were low by my symptoms, and I still truly believe at that time it was. A diabetic friend from church gave my mother a glucose meter for me to use. While I was in Target, about two hours after I had just eaten Sonnys, I felt an episode coming on. I thought it was POTS because of the faintness, clammy, dizzy, nausea, etc. I took my pulse and it was fine. I then took my sugar and it was 156. My mom took hers and it was 120. We both ate at the same time. After that, we called my doctor. She wanted me to monitor my sugars the entire weekend. If I woke up in the morning and it was over 100, then she was going to admit me. Everything was fine the remainder of the weekend.

After college today I stopped by McDonalds to get a small fry and a hamburger. Usually I drink an Orgain beforehand, but I did not feel like it today. About an hour later I started feeling horrendous. I felt nauseous, like car sick nauseous/POTS nauseous, not gastroparesis nausea. I got dizzy, and later came the headache. I thought maybe I stressed my body out standing for the 15 minutes. Once I got home, I thought maybe I should take it being that I had not taken it all week. I was expecting it to be fine. It was 181. I had eaten 2 hours ago then. We called my doctor AGAIN, and she said to get in there now.

The appointment went okay. We laughed like always! She said I am a mess. Regarding the sugars, she said she was concerned. She does not think it is diabetes because my sugar came back down too quickly for that to be. In her opinion, it is glucose intolerance caused from dysautonomia. Lovely. The good thing is that it can be treated....but only by insulin. She suggested the insulin pump instead of the shots. I don't want that, but I guess I have to do what I have to do. Before we even get into all of that she ordered 5 blood tests. I have to miss class in the morning to go get them done. Depending on the results, we will possibly discuss the insulin and seeing endocrinology.

I have started doing yoga for exercise and I love it!!! And look what I did. I didn't even sublux my shoulder. I have been trying to be beyond careful. If anyone would like the videos, then just ask. They able you to workout without feeling all out of breath. :)

Hannah's Question: How does fall affect your POTS?
I believe that it improves my POTS. It isn't quite 100 decrease out anymore, only 90. ;) Oh, the Florida heat. In the summertime it constantly rains here, which sort of makes me miserable. I fainted because of a tropical storm that was here. Fall is nice.

Logan: Happy belated birthday! I know your feelings exactly about birthdays. I understand that you want to go back in time so badly. I am about to turn 16. I was just telling my mom how I don't want to. :\

I guess that is all for now. God bless!


Wednesday, September 26, 2012

Ok. Time for some tough love

I know you guys aren't feeling well (I get it, I'm sick too).  And I know some of you are really, really, really busy. But we all agreed to this blog, and to a day on which we were supposed to post. I don't know where you guys have all been, and I really hope you guys are ok, but me and Cheyanne can't keep this blog going all by ourselves. I'm not trying to be mean, I skip too sometimes, and sometimes I'm just late and I don't always post when I'm supposed too. But please get it together guys, we need you to post. Even if you post late, or if all you post is a short paragraph or a picture and a smiley face letting us know you're alive! Please post something!

Ok, sorry about that.

I turned 18 this week : ) Can't say we did any thing terribly exciting, I haven't had a birthday party since I got sick. But this year at least we figured out how to make a liquid birthday cake. Usually we just forget the whole idea because I can't eat solids, but this year we took some cake batter and poured it in a glass dish (like you would pudding or something), and then we drew "Happy Birthday" on top with frosting.  : P

Yeah, ok.... I still threw up, and to be honest all the sugar made me feel terrible! But it was worth it! I got to have a birthday cake! : ) Well sort of....
You guys get it.
 Liquid diets can be fun if you have imagination.

I had a pretty good birthday this year though, and Hannah - thanks again.

 I even had my tube out because my throat was bothering me, my stomach was bothering me, and it was time to switch to a new tube anyway.. So I got to enjoy a little freedom for a while. ; )

I wish I had something really profound to say lol but I don't. I'm sure you guys (especially those sick and homebound) have the same conflicts that I do over my birthday. Its really hard for me to explain, I guess for those of you who are homebound, I don't really have to explain, but for those of you who aren't - It feels like I've lost/missed so much, and a birthday is just a reminder of how much time has gone by and how much, exactly, that I've missed. It reminds me that I'll never get back that time that I've missed, I'll never do those things or make those memories I always wanted to.
 It feels like there's this part of me that wants to stop time, or maybe rewind it and go back and relive everything. Only as someone who is healthy. So having a birthday just frustrates me, its like going in the wrong direction, I want to go back. But I know I can't go back, and even if I could, it would be wrong. God has a plan, and as painful as this trial is, if I don't go through it God won't be able to mold me into who I'm supposed to be.  So I have these mixed feelings about it that drive me crazy, and a birthday doesn't help anything.
 And it feels like you have to earn a birthday. I said that before, and I know thats crazy... but thats honestly what I feel. Its like I was supposed to earn my 18th birthday, just like I was supposed to earn my 17th, my 16th, and my 15th birthdays. I was supposed to earn them by accomplishing things, making memories, building relationships with people. Does that make sense? But I didn't. At least not the way I wanted to. Being sick I accomplished things, but not the things I wanted to. Being sick I made memories, but definitely not the memories I wanted to. Being sick I did build relationships, but I have lost almost all of the relationships I used to have. All those people I used to know before I was sick are gone, they aren't in my life any more, and if they really cared about me they would have made an effort to stay in my life, but they didn't. And it hurts. The relationships that I have built are all.... I don't know how to describe it... artificial? They are relationships I have built through my computer and cell phone. Don't get me wrong, I love to text, email, instant message, and Skype (although I don't get to Skype very often). But its not the same at all as actually being with a person. Someone you can see, hear, feel, touch, and hold. Its not the same. At all!
To be honest the only relationship I have left that's different, the only one that's not artificial, the only one that was there before all of this started, is my relationship with God. And in the end, that's really what makes everything worth while. I wouldn't trade my relationship with God for anything, its the most precious thing that I have. I wouldn't even trade it for those years, those memories, or those people that I lost. I would give them all up again if I had to. The truth is that for everything I've lost I've gained something much more valuable, and for everything I've gained I've lost something I can never get back. I guess I should just be able to choose which way to look at it, but its never that simple. Sometimes I'm happy about what I've gained, sometimes I'm upset about what I've lost, and some days I'm both or I'm completely confused and I don't know what to feel. I guess God still has a lot of work to do on my heart - lol but I hope that helps you guys understand.

Umm.... otherwise besides my birthday not much has happened. : / We have told my GI doctor about my hair falling out, and he supposedly sent some lab slips for some blood tests but we haven't gotten them yet. My shedding has actually slowed down a little bit over the last week. I'm still shedding a ton every day! But at least I don't (usually) get a whole handful every time I run my hands through my hair. I don't know if thats a good thing, or if I've just lost so much hair that now that it just appears like less is falling out because I don't have that much left anymore, at least not compared to the amount of hair I used to have.
I also have a physical coming up soon. I haven't seen my primary doctor in a long time, but she was sweet enough to call and wish me happy birthday! I was not expecting that at all! This is also the doctor who figured out I had Dysautonomia. 

I hope you guys are doing ok, and I really miss reading your posts!

Jesus loves you.

- Logan

P.S. I like to post late at night on Tuesday (which is my day).. but sometimes depending on how long it takes me to write a post I end up posting after midnight.. so my post technically says Wednesday. I hope nobody minds and that it isn't confusing, I do this alot but I always sign my name to avoid confusion. : /

Wednesday, September 19, 2012

Busting out of the PJ's!

Hola. Seriously, where is everyone!!!??? COME BACK!!!!! : (

I guess I have good news and bad news. I don't know what you want to hear first, so I'll just give you the bad news first. Besides this is my post, so you guys can't say boo. : P (jk) I love you guys.
Bad news is my gi tract seems to be more fussy the last 2 weeks.  Also I'm having occasional problems with my NG tube, sometimes it really irritates my throat. It feels fine at the moment but I'm really starting to think about the G-tube surgery. I can't keep this NG tube forever. I am thinking of switching my feeds back to that Orgain I told you about a while ago. I would like to keep using the meal replacement powders that I am now, the nutrition in them is amazing! But I'm having difficulty and sometimes I just end up having clear fluids instead and I don't get the nutrition I need. It would be better to go back to Orgain than to have clear fluids 4 days out of the week, besides the Orgain is natural and organic, and if I can handle it, I can always try to blend in antioxidant powders or babyfood! : )
Also, it seems that my hair is thinning/falling out. I started shedding like mad in August, and I read that alot of people shed seasonally (especially in late summer/early fall), and I asked my dad what he thought, and he said it was probably just a normal shed. But I have lost over half of my hair volume, and my hair is getting very thin in certain places. My hair still looks "normal" because it was very thick to begin with, but me and my dad who is used to seeing my thick hair can tell how thin it has actually gotten. My dad has changed his mind too, he can see the thin spots and he doesn't think its a normal shed any more.
I know Dysautonomia can cause hair loss, I think the biggest reason is usually malnutrition from GI problems, but there might be other reasons too. I am going to tell my GI doctor next time I see him, and ask if he can check me for deficiencies, but I doubt thats the problem unless I'm having malabsorption issues. I should be getting enough calories, plenty of protein and fat, all my vitamins and minerals, even fiber and antioxidants. I've never had malabsorption issues before. I also get these strange looking patches on my skin that a doctor once told me were probably from malnutrition . So that just makes me even more suspicious.

The good news is my birthday is this month : ) not exactly sure that I'm ready to be 18, it feels like I've missed 3 years of my life. It feels like you have to earn a birthday, and I don't know, maybe I'm not making any sense but it feels like I haven't had the chance. But I guess I don't really get a choice, I'm gonna be 18 whether I want to be or not.
A friend was going to try and come over for my birthday. : ) There is no better gift than that really, but also she is going to try to get me a kitten! I don't know if that will really work out or not, but how awesome would it be if it did? : P
OH and I found a solution to one of my sensitivity problems. I can't wear jeans because I am so sensitive to touch, so I normally just wear PJ's or skirts and dresses when its warm enough. I walk around like I just got out of bed, and most of the time my PJ's don't even match. : /
My dad got me some leggings (the smooth, silky type), and we got them big on purpose so that they would not be tight or irritating on my skin. And It works, I can just pull my jeans on right over the leggings and I can't even feel the jean material. : )

(The leggings under my jeans - just to prove they work lol) 

Also he got me some yoga pants (which look nicer than sweat pants/pajamas), and some pants like these:

Basically just some flared khakis, not scratchy at all. They are soft and smooth and loose fitting, but they look nice, much better than pajamas : ) That doesn't mean all khakis are smooth and soft though, if you are sensitive to touch like me, be sure to feel/try on pants like these before you buy them.
Oh and that reminds me, someone online recently mentioned to me that they even have trouble wearing bra's because of their sensitivity to touch. I can't wear normal bra's anyway because they don't make any that fit me properly. The closest I have to a normal bra is a strapless bra that only fits from time to time, and its uncomfortable no matter what. But for some reason I have not found a single brand that makes bras that fit me. I am either too small, or in between their 2 smallest sizes. Either way, they don't fit. So I gave up a while ago and just bought some good quality sports bras online from Roxy (one of my favorite brands). They are much more comfortable than normal bras, high quality, true to the size charts, and completely worth the money. If you can't wear bras because of sensitivity to touch, I highly recommend them.

How has Dysautonomia influenced your schooling? I have not been in school since I finished 9th grade. I did home tutoring for a while, it worked "ok" for 10th grade, it was inconvenient, I had to drop 2 classes because I could not handle them, and sometimes I had to cancel on my tutors. But we got through it.
 In 11th grade things got more difficult. My memory problems got even worse, so my tutors had to constantly explain things over, and over, and over, and over AND OVER again. It was very difficult to move through material because everyday the tutor would have to re-teach things to me. Also I canceled on tutors very frequently because I was not feeling well, and sometimes they would get frustrated or give up and they would quit on me. I went through several tutors that year.
 In my first year of 12th grade we decided to just do away with tutoring for the most part and I just took my classes online. I also did my senior project that year which was the only thing I really needed tutors for.
I'm starting my second year of 12th grade now, and I'm just taking classes online - one class at a time with no tutors. Honestly it works much better for me that way, I can work whenever I am feeling good, even if its 3:00am in the morning (and sometimes I do). I don't know how long it will take me to finish high school this way, I have more classes that I need to take than I thought, it could be a few years. : /

How does the fall effect your POTS? - Hannah. It doesn't really do anything to my POTS specifically that I know of, and I don't really struggle with allergies or anything. But it does make my Dysautonomia a little worse in general (aside from my POTS) because I am sensitive to cold, and as the weather gets colder I tend to have more chills. Even when supposedly its 75 degrees in the house. (I don't know, maybe its drafty, or the temperature in the house just varies alot, like it might be warm on the couch, but cold near a door or window, or if I touch the cold window I might be freezing for an hour.)  Oh and I have to be careful about going outside without a coat or warm clothing because otherwise the cold/temperature changes will overload me and make me sick.

This was a REALLY long post, hope you guys don't mind. -Logan : )

Jesus loves you!

Friday, September 14, 2012

Thursday, September 13, 2012

Did everyone else fall off of the face of the earth?

Nobody has been posting in weeks! ): I really hope everyone is okay. I haven't talked to any of y'all in awhile, with the exception of Michelle R. and Rhianne.

I've been swamped with school work. I just finished my first essay for college! Soon I will present my first presentation for college. I am praying that goes smoothly because I am terrible in front of the class. Right now I am finishing up some chemistry work. I do not want to have to work much over the weekend. Going to school is utilizing nearly all of my energy. I sleep and read my weekends away because by the end of the week I crash. I am going to have to find a better way to manage this. Skipping church this often isn't working and my boyfriend is going to get sick of not ever seeing me. I am trying to get all of my difficult classes out of the way now, so that the next couple years may be easier. After this year I will have completed all of my required math classes. I am getting chemistry out of the way. In the next years I will only have to concern myself with Biology, history (ew), and English classes.

My stomach has been a little better motility wise I guess. I have not been as nauseous, but I still am drinking the majority of my meals. Now my intestines are slow. Go figure. Everything changes quickly with me! I am drinking Powerade to try to get my intestines to work better. Powerade used to upset my belly quite a bit. I don't tolerate liquid sugars well. I tried Gatorade last night with no luck. The Powerade did work!

I have come to the conclusion that exercise is my only hope...for Ehlers Danlos anyways. I was not even aware that I had EDS until I lost all of my muscle from gastroparesis caused from my autonomic issues. The difficult part is attempting to exercise without exacerbating my POTS symptoms and stretching things out even more. The majority of the little workouts I have found require moving the joints out of the normal range of motion. That only causes problems. I am currently doing the treadmill (walking/jogging) for 15-30 minutes, 25 situps, and 5 pushups. My major problem areas, with moving around/subluxing anyways, are my shoulders and right hip. If I can just build up some muscle, I could prevent dislocations and such! Finding the correct routine is going to be a challenge.

I guess I will hold off with the questions until everyone comes back to the blog. Okay?

God bless!
Cheyanne. :)

Tuesday, September 4, 2012

I'm still alive!

I skipped 2 weeks in a row, I have not been in a mood to write lately, I have not been posting much on my personal blog either. I don't know.
It rained really good today, I absolutely love the rain. Sometimes I think I like it more than sunshine. I have been collecting rain water actually for my plants, they don't seem to like the tap water here at the new house and they seem MUCH happier with rain water. One plant in particular actually turns yellow and begins to die when I give it tap water, needless to say I am afraid of the tap water and I don't drink it unless I have to.  Oh! And I've also noticed that when I pick flowers they last much longer when I keep them in rain water than they last in tap water.

I have a ton of huge plants in my room now, and it literally does wonders for my cabin fever! When I go in my room I don't even notice the walls. All I see are the huge plants everywhere, and I feel like I'm outside in a garden, not trapped in my room.

I am going to be starting another online course soon, it took a while after we moved to get registered, but I'm actually looking forward to the course, It'll give me something to do! : P

I forgot to write down the questions I'm sorry, I will try to write them down and answer them later.

Wednesday, August 22, 2012

I hit my head.

I had this big long post planned out. I actually had a lot to say since I forgot to post last week, but I forgot most of it. Hahaha. I actually just fainted a few minutes ago. It was the first time in two years. ): Bummer. I hit my head on the tile and I am beginning to feel it now. I was not expecting to faint. Usually I'll black out and keep on walking. This time was different. I was in the hallway when everything began to go dark. I held onto the wall and began to tremor. Next thing I know, I'm on the floor. The whole thing kind of frightened me since I am not used to actually losing consciousness. There is supposed to be a hurricane coming, so the weather has been lousy. Pressure changes usually wack my blood pressure out. I think that is the culprit.

School started on Monday. The high school class seems like it will be much more pleasant than it was last school year. The college class was a wake up call. I can already tell it is different from high school. I was expecting to have work on the first day, but I did not. Tomorrow I go back and I am supposed to be writing an essay.

Question: How has dysautonomia influenced your schooling?
I am not able to do quite as much as a normal person would. I can only go to school for one period. I am dual enrolling, so I also take another class at the college. The remainder of my classes are online. Most would probably disagree, but I feel that I can actually get better grades now! I have lost the majority of my friends, so I really have nothing else to divert most of my attention to.

I have noticed that nobody has been posting recently! I hope everybody is okay.

God bless,

Saturday, August 18, 2012


But I will learn to breathe this ugliness you see,
So we can both be there and we can both share the dark.
And in our honesty, together we will rise,
Out of our nightminds, and into the light
At the end of the fight...

Song lyrics by Missy Higgins, just in case you dont understand the title.

Sorry guys, I have been so MIA. As most of you guys know, I haven't been doing that well. I have been fainting, and fainting, and fainting, and doing homework (just to spice things up). I have swamped with homework.

I had to drop a subject which I am really devasted about because I wasn't well enough to keep up and physically get there. Groan. Moan. Blah.

I really don't want to post. I honestly hate writing "down" styled posts and we arent doing that great as a group so I dont want to bum you guys out.

Question: how has dysautonomia influenced your schooling?

Thursday, August 9, 2012

It's Cheyanne posting late!

Sorry, I forgot yesterday. Nothing interesting has been happening with me. I have been trying to finish my online classes before school begins again. Today I went to the cardiologist. The atenolol is working fabulously! I love it. :) My other issues like my irregular beats and chest pain have not cleared up. I am sure they are not POTS episodes because they are too consistent. He put a holter monitor on. We'll see what becomes of that. I don't want him to find anything wrong, but I don't want him to find nothing and think I am faking it all or something. I know that y'all know how that goes. They had ran out of holters, so we killed time at the mall. My mom and I have been on the hunt for shoes. My lovely Marfanoid body causes my feet to be extremely narrow and long for a person of my size. Shoes in narrow sizes are not very prevalent. I wound up buying a pair of boots. They weren't narrow, but if I lace them up enough and put the insoles in they fit good enough. They also come just above my ankles. That helps a ton because they support me through there since my ankles are floppy.

My appointment at Shands got moved up! We will discuss the NJ then. I will probably have it for about a month if he agrees. The whole point of it will be to see if I would want a permanent J tube. I don't know how I would feel with a permanent one, but at least I will know that the option is always available to me.

I cannot believe that school starts in less than two weeks. That is scary. I do not want to go back to the high school. Ugh. I'm praying that going to the college for another class will be a positive experience for me. I'll at least get a change of scenery. I hope my body can handle two classes. The college class is only on Tuesdays and Thursdays, which makes it easier.

My Question: What do you all want to do after high school/college? 
It's okay if you don't have an answer. I just cannot think of a question, but I want to ask one. :) I want to be a music journalist. They are the people who interview the musicians, write critiques, etc. Or maybe even a connective tissue geneticist who deals with Ehlers Danlos, Marfans, Loeys-Dietz, etc. I am sick of doctors, so I don't know if I could ever go into the medical field. 

I hope y'all are feeling okay. God bless xx

Wednesday, August 8, 2012

Hey late poster alert.

Its meeeeee. I was going to post yesterday.. and obviously didn't do it. O_O
Not much has changed, I'm just trying to make the best of summer : ). It occurred to me the other day that we all have silly things that we do for fun, even though we are not feeling well. For me painting my nails is a big one : ) I don't know why, its small, its stupid, but it makes me smile to have my nails painted obnoxious colors and patterns.

Oh and when I'm feeling up to it and the weather is tolerable just sitting outside and enjoying the grass and the sky and the sunshine can completely change my mood.

Rhianne: no I have not been watching the Olympics.

Cheyanne - my results : ) - INFJ - "Author". Strong drive and enjoyment to help others. Complex personality. 1.5% of total population. I found the quiz really interesting, I never had to answer questions like that before, and I realized that even though I tend to listen to my thoughts more than my feelings, I often value compassion more than competence, and feelings more than thoughts in general.  That's just weird. lol 

Hannah - Sometimes I struggle with speech problems, not so much any more but I still have my days where I trip over my words like crazy, I also sometimes have a hard time just getting my thoughts out in any way that makes sense and I probably come off so weird to others, like Rhianne said I sometimes must make awful first impressions on the rare occasions i get to make them lol.  


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!


Wednesday, June 27, 2012

Hey guess who?

I'm late again, : 3 sorry about that. Christine also apologizes for not being on the ball with posting on alternate Tuesdays! She says she is having bad memory problems right now, and what with how hectic her life has been recently i think we should be understanding. (I'm sure she will explain somewhat when she posts.)
Anyway, my life has been a little hectic too i confess. We are in the process of cleaning up the house, packing, moving... and of course my dad is doing some renovations in the new house to make it more suitable for my grandparents and me.
I am trying my best to get a passing grade on my online history course by the deadline which I believe is the end of this month YIKES.
Also I'm trying to find ways to get enough calories and nutrition when i either have to thin out my feeds or just do clear liquid feeds altogether. (And in the process I'm still trying to stay as natural as possible with what i put in my tube, the healthier a diet I'm on, the better my symptoms are.. that that's no easy task right now.)

Hopefully in a few weeks things will be less chaotic : ). Now i have a confession to make with you guys, i have been throwing up small amounts of blood. And when i say small, i mean SMALL.     teeny     tiny.      Like just a few drops usually at a time. No biggie. At first i thought it was probably just blood from irritation in my nose that i had swallowed without knowing it and was puking it back up.
 (That was gross wasn't it? Sorry)... But I actually haven't been having any nose bleeding lately. My nose bleeds from my tube have stopped! : ) So if its coming from anywhere, i suspect its probably bleeding from my throat, but my doctor also suggested that when you throw up you can sometimes burst little blood vessels or capillaries and that's where the blood could be coming from. Altogether he really didn't seem concerned at all, which surprised me!  My Gi doctor has been really pushing for me to have the G-tube surgery for a while, but i have been saying no.  So I expected that at the first sign of more irritation he would be quick to want my NG tube out. But I have been praying that if its time for me to have the G-tube surgery God would cause that to happen, but if not, then God would close the door and prevent it from happening. So, Its all in God's hands as far as I'm concerned. : )

I had an interesting experience at the new house last week. I went over just to look around, bring over some junk, and help clean up a little. It was very hot in the new house because we didn't have the air conditioning in yet, and I started to get sick from heat (and noise and exhaustion). So I was wearing this big baggy black T-shirt.... (Which might actually be my mothers and I should probably give it back lol.) And I took the T-shirt and I got it all wet in the sink and put it back on, and it worked! Kind of like a cooling vest, only much more gentle (for those who are sensitive to both heat AND cold like me and can't wear cooling vests.) So for those who don't have air conditioners, and either can't use or don't have a cooling vest... try taking a dark colored T-shirt or tank top (that won't be see through when its wet), get it wet, and put it back on : ) It works wonderfully!

Other than that, I had two odd situations i wanted to share with you guys.
The first one is i got some sandals (Adidas brand).

 I have wanted a pair like these since 9th grade, I love how they look, and i love how you can wear them in the winter if you wear them with thick fuzzy socks. Those bumpy things are supposed to massage your feet when you walk, but because I'm so sensitive to touch I can't walk with bare feet in them for more than a minute or two. I kid you not, MY SHOES MAKE ME SICK. I get a headache, I get nauseous, and then before i get any worse I take them right off. So In order to wear them i have to wear them with socks... ALWAYS. And they actually do feel good with socks on, the little bumpy things do massage your feet, but its too much barefoot! I need to wear them with socks to tone the feeling down!

Also, yesterday I had an embarrassing ordeal where i had a fit of muscle jerks (and some tremors too) for over an hour. Most of the jerks were in my legs which means i couldn't get up and walk...  Without going into alot of detail, basically my grandmother had to wait over an hour for me because I couldn't get up.  Also, I wanted to get up so that I could ask someone a question... but i couldn't.
It worked out because the person ended up coming over to me. But it was sort of an awkward situation.. especially because i was having issues talking, and because I was not comfortable making eye contact when flopping around uncontrollably like a fish.

So this is my question for the week, does anyone else avoid eye contact when having muscle jerks?

 Rhianne: How much independence do you have? Not much.. been home bound for 3 years. But in a way honestly i think its good for me. Being sick, home bound, dependent on others... but most of all being dependent on God i think is good for me.... The more i come to realize how pathetic i am, the more i come to realize how awesome the King of Kings is.

Michelle K: I am on Florinef and a beta blocker i can't remember the name of.. nor can i remember the dosages lol

Cheyanne: I don't get chest pain any more, but I used to, and get I palpitations, but not as often as I used to.

Oh and I get all kinds of headaches, some are all over my head, others for some reason are only in the front, back, or side. 

see you guys in a couple weeks. : )  Logan.