Tuesday, January 31, 2012

Busy, busy, busy, always rushing

So I am sort of busy and really tired from school so this will be somewhat quick.


Cheyenne: You were talking about how you miss Maccas and I don't crave junk food anymore (not that I was ever a junk food addict). Your taste buds will change over time.

I am actually good at Maths, my English skills got a lot worse when I got sick. I literally had to reteach myself how to read.

I don't have Marfaans but I already told you that on Facebook.

Does your period set off your pots? And yes, I have pots symptoms since year 8 but only during my period. Only during Year 9 I started getting symptoms and attacks outside my period.

Logan: I'm so glad that you got an exercise bike. I love mine. :) And I hope your pump keeps working.

Miranda: Sorry you have to move! I moved twice in year 8 (within two months) and it was horrible. The second move we moved across the road and down a house and we carried everything! Even our heavy dinning room table. Glad you are getting caught up at school.

Michelle R; HAPPPY BIRRTHDAY! You are 18 now right?

Michelle K: Hope you are going well back at work. And go Australia Day! Aussie Aussie Aussie! Oi Oi Oi!

Do you find yourself tempted to take on way too much even though you know realistically you shouldn’t be doing so much?
Um, I don't know really. I usually just do what I need to. Except I am doing 13 units at school.

My question: Do your legs feel itchy when you have blood pooling?

So guys I am really tired. SCHOOL IS HARD! Not academically but physical wise. I came in the door yesterday and leant on the filing cabinet for 10 minutes. My sister Shenae was like did you go on the bus? And I was like yeah, I've had to much education. I felt like I was going to puke, throw up and faint all at once.

Today wasn't that great either. I have a headache and I am exhausted now. I only have one class tomorrow (a double period of extension English) which is good. My friends and I are going for pancakes in the morning.


Friday, January 27, 2012

Getting Caught Up

I'm finally getting caught up on my algebra 2 class! I stayed after school today and I'm going to again some more next week. It's really awesome to have a teacher that can sympathize with what I (and we) are dealing with, although she doesn't quite understand it. My memory is also pretty bad, my math skills also, so it takes me a lot longer than everyone else to learn and actually comprehend it. 

I don't remember if I mentioned it before, but we're in the process of looking for a new house, and in the next month or so we'll be moving. I'm really anxious to see how my mom and I make it through the move; last time we moved it was a year or so before my POTS started getting bad and before my mom's pain and ankylosing spondylitis/arthritis got bad too.

I'll move onto the questions before I start rambling on too much.

Cheyanne:  Does being on your period set your POTS off? Not really, but I do get really bad cramps and vertigo. 

Rhianne: I haven’t tried yoga, I’ve looked up some basic stuff but it all looks like positions that I can’t be in for very long, without getting tachycardia and all that good stuff. Your question was how do you stop yourself from overdoing it? I really don’t do much, but if I do I always take breaks (and naps). I’ve even sat on the shelves in grocery stores because I needed a break. :)

Erin: What do you all take for colds? I rarely just get colds; I’m like a magnet for bronchitis, coxsackievirus and strep throat. But I’d suggest hot tea with honey (I like a bit of lemon too).

Michelle K: Do you suffer from abdominal pain and if so is it's something that has been investigated, or is it just a POTS thing? Yes, I always have abdominal pain (and nausea). My gastroenterologist won’t do any more testing on me, so I really don’t know why I have it. He said it was from constipation, which is something that I also frequently have, then dismissed it. I’m really hoping to do to the doctor that Hannah suggested, but I keep forgetting to ask my mom to call!

Bis zum nächstes Mal,

Wednesday, January 25, 2012

My bad

Forgot to tell the readers who was posting! And for some reason it wouldn't let me edit! sorry, the below post is from Logan!

I'm Alive!

Having my teeth out did not go well at all!  I was pretty sick for while from the the anesthesia, and the Codeine gave me headaches which turned into migraines. Then one side of my mouth got infected, and I just felt lousy because my body was trying to fight the infection! I saw a doctor and she gave me antibiotics. (I'm feeling better now.) But it was just such a mess!

At the moment I'm really having problems with my feeding tube pump, sometimes it clogs, (and its no wonder with all the thick blenderized stuff i put through it. ) Sometimes even though the feeding tube bag is full the pump says *no food* for some reason. Either way, a very loud screechy alarm goes off all the time when the pump is having trouble. I get really sick all the time even just from noise of the alarm, and its making getting enough calories really difficult too. We end up throwing away half of what we pour in the bag because the machine won't cooperate.
Overall I'm still feeling so much better since I was able to switch to this diet, so I'm just trying to make the best of it though. 


I miss McDonalds. :(

I have went gluten free now and it sucks. I have noticed that the past few days I have not been as sick belly wise...with the exception of today. I don't know if the other days were just a coincidence or not. I REALLY miss McDonalds because that is one of the only places that don't make me sick. I know that sounds odd. I only get a hamburger with ketchup only and a small fry though.

I started my geometry honors class this week. My new schedule is different. They have me going in for my one class at a different time every day of the week. My mind does not think the way it used to, especially with numbers, so I am nervous about the class. I seem to understand the teacher though.

We have been looking into Marfan Syndrome because I seem to fit most of the physical criteria. One being that a bone in my chest protrudes out. :( I have heard of some EDS type 3 people having the physical characteristics of Marfan Syndrome, so i guess we will see in February! Does anyone else have this? I doubt it, but I guess it does not hurt to ask.

now on to the questions :)

Do you get abdominal pain?
Yes, all day, most of the day. I always assumed it was from the dysmotility in my intestines.

What do you take for colds?
Aw, I am sorry you caught a cold. :( I hope you get over it soon! I actually am afraid to take anything because I react to most of it.

What do you do for joint pain?
I don't really do anything for that either because none of the meds work and I don't want to go on heavy pain meds. I will put a heating pad on them and wrap them if it gets too bad. I also use a gel called biofreeze.

How do you stop yourself from overdoing it?
I just go until I crash for the day (which does not take much lol) by 3 in the afternoon I'm done for. And no Rhianne, I had no problems with getting my permit. :) I haven't passed out in over a year though, so I think that is why.

My Question: Does being on your period set your POTS off? 


Monday, January 23, 2012

Almost 200 posts!

Yes guys! Actually this will be the 168th post on the blog but we are getting close right? That is so cool.

So I am going to start with the posts then I will talk about my week, (well type not talk, haha).

Logan: Where are you girl? If you don't post tomorrow I will spam your inbox. Kidding, but I will send you a message and I hope you are okay. I know you were throwing up yesterday.

Cheyenne: You're driving? Wait, aren't you only 15? In Australia, you can't drive until you are 16, when you can apply for your Ls (learners permit) then at seventeen you can get your red ps (red permit), green ps, then your blacks (full license). Did you have any issue getting your permit? My doctors I don't think will ever let me drive.

You asked about gluten, and no I am not gluten free but I try and avoid white rice and bread.

Miranda: I am glad your homeschool review went well. You asked about what we do for joint pain and stiffness. I don't get that so I am not much help. Have you tried yoga though?

Hannah: Australia zoo is one of the zillion reasons you should get your but out to Australia! Haha, come to my house and we can have vegemite and tim tams. Hehe! Aussie Aussie Aussie Oi Oi Oi. I am sorry you overdid it cleaning by the way.

Michelle K: My Aussie Pal! First of all, even though I think you are crazy for going back to work, I hope it goes well for you! And I'm glad you have found someone, he sounds like a nice guy. You asked about abdominal pain and yes I do get that, especially after I eat Chinese food.

Erin: I just want to say that American healthcare sounds CRAZY! 25 dollars a day. I am so glad I'm Aussie. You asked about colds and I suck on eucalyptus lollies and take honey, I also brush my teeth all the time.

My week has been good, I overdid it a bit during the weekend but oh well. My Grandma was here, so I hung out with her a bit. We also went school shopping and I got all my supplies, I even have a new uniform (seniors get a new uniform at my school).

On the weekend, I helped my friend with my drama project (for her HSC) and it was a lot of walking, standing, running. Two of my friends stayed over on Saturday and we watched Music and Lyrics (which is a great film). Sunday night I was so tired I went to sleep at like 7!

This is the last week of school holidays. So my question this week is how do you stop yourself from overdoing it?

At the moment I do a to do list everyday with all the stuff I want to accomplish and stop when I do all those things, even things like "wash your hair" is on the list. I can only put so many tasks on the page. Haha.

I hope everyone has a good week. And I will let you know next week how I am going back at school.

Sunday, January 22, 2012

In-jec-tions & Sleep Study

So, you know how I have been taking about receiving b12 injections shortly (for the past month or so) well... I FINALLY started them today. Figuring out how to pay for them and the best approach took awhile, plus I just kind of avoided the thought and wished my levels would just magically improve. Sadly, that never happened (not even with 9months of oral supplements).

If you ever need to receive long term b12 injections, I recommend you look into having someone you know do it for you - If I were to go in to my doctors office, insurance only cover a couple shots PLUS I would have to pay my $25 co-pay every time. Holy buckets, that would be $450 just for the co-pays. I am currently making zero dollars and can barely afford the basics. no thank you. A better solution? My moms best friend is a registered nurse whom I trust with my life and she is administering the shots in my comfort of my own home :) According to her, I should feel improvement in a couple days. I literally can't wait. I am sick of not being able to even stay awake past 8:00ish. I have no energy. Praying this gives me relief and also helps other symptoms!

Added bonus. It wasn't as painful as I expected. I have received a lot of intramuscular injections (such as phenergan and multiple antibiotics) which hurt like a son of gun, but this was deep subcutaneous and wasn't as bad! The bright red liquid looks a little freaky, but other than that, my arm is a little sore, but definitely bearable. Since I am getting them every day, we decided to do arms, thighs, and buttox to give the different areas a rest :)

Tuesday night, I am going to the medical center to have my sleep study done :) That will be interesting and insightful - I also have to stay all day Wednesday for a narcolepsy study. They said to bring a computer or book as I won't be able to leave the room all day and I need to keep myself occupied or I will be bored as heck. If you want to chat or skype Wednesday I would love that!

A lot has happened this week. I have a nasty cold, which sends my POTS symptoms in a downward spiral. I have been doing SO good too. The television has been my life this weekend. Pathetic.

My mom had surgery on Thursday and we are hoping that her organs will be positively affected :) She had a nerve stimulator implanted to increase the functions to her bowel and bladder. (nothing works for her and since we have faulty connective tissue,  her organs fall and she has had multiple prolapses) - prayers would be much appreciated as we are waiting to see if this works! Cathing every day and a colostomy bag is not something she is looking forward to! :/

I hope you all are hanging in there :) Especially those getting your license or permit! Exciting!

::Question Time::

When is your birthday? September 26th  What do you want? things for my future classroom :)

What is your families approach to alcohol? Well, before I was 21, it was looked down upon (obviously) but in general, having a couple drinks socially is totally acceptable. When we get together for family functions, the guys usually have some beers and the women tend to gravitate towards wine coolers or margaritas. I personally have found that alcohol does not have effects on my POTS while I am drinking (and come sometimes give me the feeling of "feeling better") -- a lot of others have claimed this feeling as well, but in no means am I promoting drinking or saying that it is a good treatment. Just pure observation and experience. The next day, however, can be quite difficult if you consume too much as alcohol makes you dehydrated.

Do you eat gluten free? I have tried to limit my consumption of wheat products, but I am not completely gluten-free. Honestly, I am waiting to see a specialist in the Midwest for allergy and immunology (and I know I have food allergies) so I figured just live it up until she makes her recommendations :)

What do you do for joint pain and/or stiffness? I'm not sure if I already answered this question, but it won't hurt to do it again. Typically, I just try to use ice and heat. If I need to I will take ibuprofen, but try not to at all costs. Also, I will use massages; however, sometimes I think that makes my POTS symptoms worse. Does anyone else notice that?

Do you suffer from abdominal pain? Was it diagnosed? I have suffered from stomach conditions since I was seven years old. It was first diagnosed as IBS and then later on found to be lymphocytic colitis. I was on steroids for 4 years and currently am doing much better. (I was really bad then, so I still have stomach issues at least twice or three times a week) I have also had ulcers, rough intestinal lining, eosinophilia, and my gallbladder removed. 

Do you hyperventilate a lot? I can honestly say that I have hyperventilated two times in my life, so no.

Do you procrastinate? YES. but. I always get my work done. I have never not finished a project or an assignment, but I love to wait until the last minute. Truthfully, sometimes I think I really perform better when I wait! I like the stress of if. Weird? I know... 

My Question: What do you all take for colds? I cannot take decongestants or antihistamines, due to my medications - so what do you do when you cold comes on?

If you all don't watch The Bachelor, you should! It's on tomorrow on ABC at 8/7 central! :) It's a stupid, but addicting show that you can't help but love.

Until next Sunday,

Haven't posted in a while

post removed by author


Friday, January 20, 2012

Your Every Other Friday Host :)

Hannah here, Hey lovely people!

I feel like I can't quite remember this week- Ha! I think I mostly hung around in my recliner, crocheted and watched Way of the Master and other videos on youtube. I'm expanding my brain's horizons ;-)

Ever since I spent a whole day cleaning in my basement, was it two weeks ago now? I feel like I am still in recovery from that. I've been having more body pain than usual, more painful headaches, but it's probably sinuses because everyone here seems to complain of a headache-lol- and some GI weirdness.

But I'll go ahead and answer the questions;

Erin: What are all of you girls allergic to? Foods, outside and all? Do you avoid EVERYTHING that you are sensitive to or what is your coping mechanism for allergies? Medicine, etc? Haha, I'm wondering how to answer this question because... I am  allergic to A LOT outside plus dust, cockroaches, etc. Food wise, I reacted badly to iodine during a CAT scan as a child so I am suppose to avoid seafood, however, I had like half a shrimp around Christmas and nothing happened from it unless of course I couldn't discriminate it from my other symptoms. I believe I have a sensitivity to gluten because when I eat it, it causes me to have pain in my esophagus/ increased acid reflux symptoms and I think it contributes to other gastrointestinal problems. As far as what I do; I used to be on Singular but it caused my limbs to feel numb so I took myself off of it (Caution to the readers: It's not the wisest to take yourself off a medication depending on what it is, so be sure to check with your doctor and use caution), otherwise, I just try to avoid things that make me feel bad and I occasionally take Clariton. Also, the fear of vomiting must be pretty common, I always thought I was crazy because of how afraid of it I am and have been- lol.

Rhianne: What is your favorite POTS/Dysautonomia video? Y'know, I am not sure- but I may just second the video you posted (plus my pic-a-ture is in it:).
 What is your family's approach to alcohol? My parents don't drink that I know of, my Dad is willing to let us try it but does not necessarily advocate it. Of course, both of my siblings are adults in their twenties so they decide for themselves. I know both of my parents are against getting drunk. For personal convictions I don't want to try alcohol besides for medicinal uses, but aside from that- I am terrified of it because of my POTS...Oh, just thinking about what it could do to my POTSy body feels dreadful! That's interesting though that your body didn't have a reaction to it! I am so surprised!

Also, about your running, I seem to be the same way with my biking on the recumbent bike. One day I may be able to bike like crazy and the next day I have to force myself to even get to a quarter of a mile. I think it's how our body's adjusts or recovers or something.

That's so cool that your mom stayed by Steve Irwin's zoo! I really need to come to Australia, I keep telling my parents how much I want too :).

Cheyanne: Happy Late Birthday Girl! I hope you enjoyed your laid-back day :). Your question(s),  Do you hyperventilate a lot? Honestly, I'm not sure that I understand what hyperventilation is. I do have random periods of trouble breathing that can be mixed with tachycardia but I am not sure if that is hyperventilation or not. Sorry! And, How many of you are eating gluten-free and when you went gluten-free did it improve your symptoms? I am eating gluten free :) My gastrointestinal symptoms definitely improved, and when my GI issues are lessened, it seems to have a domino affect :).
Congratulations on getting your permit, thats so exciting! :) I haven't gotten mine yet basically because I am also afraid to drive... I am afraid because I brown out- have issues with visual perception, etc. but I know being a POTSy and driving is POSSIBLE, let's just look at Erin for example, Erin, you can be our inspiration for attempting to drive! :).

Michelle R: Michelle, you didn't have a question but turning 18 is so exciting! :) Also, that's stinky that you are concerned with your lyrica. I know especially as females it's easy for us to get concerned with our physical appearance and weight, but girl, if you are eating healthy (and it seems you are), don't worry, your body will be healthy (putting Dysautonomia aside, of course lol) :). And you are incredibly gorgeous :).

Miranda: Do you procrastinate? Yes! And it is a downfall on many days! Aside from when my health cannot be my excuse, sometimes I feel like I procrastinate simply because I am lacking in the energy department! But even when my energy wasn't an issue, I did indeed, procrastinate. That's something I am working on.
What do you guys do for joint pain/stiffness? Ah, I wish I had a good answer, my SSRI definitely helps, but aside from that- really the only thing I do is use home-made rubs with essential oils that have menthol qualities like Eucalyptus, Rosemary, etc. Of course, since this is the internet, I want to advise anyone new to the use of essential oils that; they are for external (don't eat them!) use only (I sound like I'm on an advertisement) and they need to be diluted in carrier oils such as olive oil or almond oil, etc.

Alright lovely ladies and fabulous readers, have a great weekend and keep smiling :)
I just wanted to add; since Michelle R and I are doing every other week together, if you guys would like to keep up with my Dysautonomic self, feel free to check out my blog!; livingwithdysautonomia.blogspot.com

Until Next time :)

Hasta Luego!

Thursday, January 19, 2012

Still Waiting

Hey guys!! I hope everyone has had a good week so far. Mine has been quite uneventful, besides Drain-O eating away at our test tubes in Chemistry today. But I do have good news: I'm still on the waiting list for Doctor Grubb, but now I'm also on the cancellation list also. My dad insists on calling every week to see where I'm at and without someone cancelling it's going to be another 4ish months. So I am taking the liberty to figure out where we're going to stay and all of that good stuff. 

I went to my reviews last week and according to my reviewer I'm doing quite well. I was stressing out over that for weeks, because I still think I'm behind. The classes that I have to go into school for are quite boring sometimes and very confusing, especially my Algebra 2 class. I have so much trouble with math in general, so I'm going to be staying after for a few times to get tutoring from my teacher and get caught up from missing so much.

Going onto the questions...

Cheyanne: I’m sorry that your joints are hurting so bad, but I deffinitly understand; last week I couldn’t even get out of bed because the pain and stiffness was so bad. Your question was: how many of you are eating gluten-free and when you went gluten-free did it improve your symptoms? I’m not eating gluten free, I’m eating “whatever-I-can-when-I-can,” lovely diet isn’t it? :)

Rhianne: What is your family’s approach to alcohol? My family isn’t totally against it. My parents will drink a beer or two for New Years Eve or some wine with dinner occasionally. My mom can’t drink with her medication (and neither can I, although I’ve tried wine, beer and a Strawberry Daiquiri once), but as long as someone isn’t drinking and driving , an alcoholic or is interfering with your life, we don’t see it as a big deal.

Michelle R: When is your birthday and what would you like as a gift? My birthday is on November 17th, I don’t really like gifts, just handwritten cards are really nice. :)

My question: What do you guys do for joint pain/stiffness? Ibuprofen doesn’t work much for me anymore and Tylenol doesn’t work at all.

Until next week, 

Wednesday, January 18, 2012

I got my permit today.

I am kind of nervous about driving because I never know what my body is going to do. I get these terrible headaches out of nowhere and when they come on I can't even open my eyes it is so bad. They don't last long though. That worries me because I may get one while I am driving. I guess we'll see. 

Right now I feel horrible. My stomach hurts, my heart has been crazy all day, joint pain has been 2 times worse than usual, and on top of that I started my period (my periods are terrible and super painful). So, I am going to make this a short post and go listen to my Man Overboard vinyl that I got for my birthday, but it just came in the mail. :)

My Question: How many of you are eating gluten-free and when you went gluten-free did it improve your symptoms?

Miranda's Question: Do you procrastinate?
I do, but not too badly. I always get everything done on time.

Michelle's Question: So when is all of y'alls birthdays and what would you like as a gift?
Mine was on the 11th of this month. :) 

God bless and I hope y'all don't feel as horrible as I do.

Monday, January 16, 2012

Two weeks left of summer!

The questions:
Do y'all hyperventilate a lot? Not really, I did for a while when I started going back to school regularly and I was so not used to walking up all the zillion of stairs at my school.
Do you procrastinate? NO! I am the person who likes getting things over and done with.
So when is all of y'all's birthday and what would you like as a gift? My birthday is June 28th, and I have no idea yet. It is still so far away.

Hey guys, my week has been semi alright. The worst part of it was that my friend moved away and I haven't been well enough to get of my but and make plans to catch up with them before they left, so that really sucked.

On Monday my Mum came back home from Queensland (they were staying near the Steve Irwin zoo Hannah ;) ). We also had house guests and the girl was very loud and sometimes I got sensory overload just from her whining. I know that sounds horrible but gosh, this kid can whine.

On Tuesday, I went to the gym and did some stuff. I honestly can't remember what we did the rest of the week (I am pretty brainfoggy). I finished reading Greg Page (the yellow wiggles's book) it was very good actually. I highly recommend it. This summer I have tried to read for an hour a day to keep my brain active.

One of the nights we had some people over and we had some house guests as well. And I may have had some alcohol. I know most of the people that read this blog are American and you can't drink until you are 21 (legally). In Australia you can't buy alcohol until you are 18 but parents are encouraged to help children be introduced to alcohol safetly if that makes sense.

So I asked for a shandy and I had a few sips of red wine (which was really strong). I literally had less then one standard drink and it actually did no effect to my pots.

So my question this week: is what is your families approach to alcohol?

In my family, my parents drink socially, there is alcohol in the house, my parents don't hide it and if I asked for some (socially) my parents would probably agree (to a degree, something like a shandy or a wine they aren't not going to get me drunk on pita colada's).

Anyway there are only two weeks of school holidays left. I am going into Year 11 which is the start of my senior school. This year is the first year where I have been able to pick all my subjects (except for english which is compulsory). I am taking:

  • Advanced English
  • Extension English
  • General Maths
  • Biology
  • Ancient History
  • Drama
I hope everyone had a good week and I will see you all next week. I got a new desk this week which hasn't been set up yet so next week I will probably do a video sitting at that. I still haven't post my Christmas video either I am so slack.


Saturday, January 14, 2012

Hey y'all :3

It's me Michelle R
Sorry this post is way late. It was my brother's birthday so we went out to eat. Jeez I feel like such a cow. It was Italian food, so it was super good and we ate wayy too much.
I recently went to my doctor, and she started me on Lyrica, which I already hate. It could cause weight gain and honestly that "if" factor bugs the crap out of me. It makes me anxious and makes me want to starve, but also makes me want to eat everything in sight. Sigh.
Anyways, soon I'll be 18 on the 28th of January. And the only thing I want is a boy to distract me from everything. From pain, reality, school, and everything in between.
Silly, huh?

I hope everyone is good and well. No bad flare ups and what not. <3
So when is all of y'all's birthday and what would you like as a gift?

Til the end,

Friday, January 13, 2012


Sorry I'm late! I already wrote up a post on my blog, so here's the link. I answered the questions in it too.

Wednesday, January 11, 2012

It is my birthday! :)

I decided not to do anything for my birthday. I kind of lack in the friend department and we couldn't think of anything entertaining for everyone to do that I could actually participate in. My mom bought me a new dresser and mattress instead. :) The mattress is one of those memory foam ones! I am hoping it will help my joints. With my Christmas/birthday money I bought a record player/CD player/cassette tape player/radio/ipod dock. Later, I am going out to eat at Steak and Shake.

I have been planning to get my permit, but I took a practice test online and bombed it. I'm going to study more and put that on hold for another week or two.

Other than my joints, tummy, and breathing issues I have been doing pretty good.  I did have a POTS episode in Target the other day though.

My Question: Do y'all hyperventilate a lot? 

Miranda's Question: Do you get the hiccups a lot?
Ever since my surgery (nissen fundoplication to prevent reflux) I get the hiccups many times a day. Before that I didn't get the hiccups really.

Hannah's Question: Does anyone feel like they cannot vomit when they are sick? 
This question doesn't really apply to me because I cannot vomit at all because of my surgery. I do dry heave about everyday/every other day though. Oh, and I hope you feel better. Getting a stomach virus is like one of my worst fears because nothing ever wants to go away once I catch a virus and I don't know what it would do to me.

Erin's Question: What are all of you allergic too?
I am sensitive to just about everything lol!!! Soaps, facial scrubs, perfume, random foods, etc. I even try to buy the organic stuff and over half the time I react worse to those than the regular. Medicines are the worst for me. If there is a side effect, I will get it. I tried a SSRI not to long ago and it stopped my stomach again and everything. As soon as I stopped it everything went back to normal. I try to avoid everything that bothers me. And I try to avoid trying to meds as much as possible.

-Cheyanne :)

Monday, January 9, 2012

Thinking of a cool title

I am going to start with the questions for this week:

What are all of you girl allergic to? Foods, outside and all? Do you avoid EVERYTHING that you are sensitive to or what is your coping mechanism for allergies? Medicine, etc?
I am not allergic to anything really but I find I can't really eat processed foods, soy and corn without my stomach giving me heaps.

Does anyone ever feel like they can't vomit when they are sick?
I have got really bad nausea for weeks when adjusting to new medications (such as beta blocker and my SSRI). I have literally lost 5 kilos in a week or two from not eating due to nausea (for some reason I seem to lose weight really quickly).

What is a fun way to spend a birthday when you are dealing with a chronic illness?
I have only had one birthday since being sick with POTS. I had just been realeased from hospital and was on a new medication. I wasn't eating and jerking all the time so I didn't do anything but I remeber that day I ditched learning support (my doctors wanted me to stay in the special ed building instead of going to regular classes) and hanged out with my friends which was the best thing ever.

My question is: What is your favourite POTS/Dysautonomia youtube video?

I love the song used in this video in the second half. I just brought it on iTunes.

Anyway here is my ramble. I haven't been feeling that good. It sucks! Earlier this week I ran TWO FREAKING Ks on the treadmill, and yesterday I ran like 500m which was so much harder then the run before. I have been blacking out so much in the morning.

I just hope this clears up before I go back to school. I am trying to read an hour every day so I don't have horrible brainfog when I return to school. Right now I am reading a book about Anh Do an Australian Comedian. I am going to read Greg Page's book after I finish that.


Sunday, January 8, 2012

First Sunday Post of 2012

Well Happy Sunday Friends :) 
Boy, it sure has been a long time since I have last posted. 
Last week was New Years and the week before was Christmas Day.
Sundays have been quite eventful to say the least!

Christmas was just fine and dandy. I spent Christmas Eve with my boys family and all Christmas Day with my family. It's the usual routine that we have set. Pretty relaxing holiday break!
My symptoms have been pretty good, minus the continued breathing, sleeping patterns, and joint pain.

 I have a lot of doctors appointments coming up this January-April!
This week I have an appoitment (my third one) with a Pulmonologist. This is the third one I have been to, but the best in Nebraska. So we will see what's going on.

Later this month, I have a sleeping test and a narcolepsy test all day following.
Interesting Fact: The sleep specialist is highly intelligent. She did a lot of research on Ehlers Danlos and Dysautonomia and said that the second leading cause of sleep apnea is a connective tissue disorder like EDS. We will see how that goes later this month!

My last two appontments are in March and April and are a follow up with my Autonomic Neurologist (every 4months) and an appointment with an allergist. The reason I have SO many appointments, despite the fact that I have been seen by multiple of these specialists before, is because this hospital is one of the best in the whole midwest. They like to do their own testing and research, so it's pretty much like I am getting a fresh start :)

That's what's new in my health area of life. I will keep you all posted!!

Now for the questions...

What did you get for Christmas? 
I got a crock-pot for easy cooking and a new heavy duty smoothie maker :) My old one was giving out! I also got a new knife set for cooking that I needed so badly. The ones I was using were so flimsy it was rather pathetic. I also got a new pair of TOMS and some warm PJ's :)
What is your New Year's resolution
Honestly, just like Hannah, I really don't have a resolution. I want to try and eat healthier and attempt to cook all homaide meals. I really want to practice and gain better cooking skills!
What is your favorite summer activity?
Hmmm...Before getting sick, it would totally be swimming. Since getting sick, just sitting outside and watching the kid's play. :).

Do you ever feel like there is a subwoofer in your body?

Yes, I do get that feeling. Especially  pulse like feeling that Hannah referred to. It comes on mainly when I have attempted to be active or did a lot of maneuvering.
Do you have any New Year's traditions?
Nope. I wish. That would be fun.
This year I stayed in my apartment and lived vicariously through the excitement that people were portraying through the television. So exciting, huh?
Do you get the hiccups a lot?
OH MY GOSH. I am called hiccup girl. It's really not that bad, but I usually hiccup every single gosh darn day for the past 6 years! That is crazy that you say that you do too. Doctors don't even understand why this happens to me. It doesn't even sound like a typical hiccup either. They are really high pitched. Nothing makes them go away. I do have reflux very badly, but it has been controlled by intense meds.

What is a fun way to spend your birthday when you have a chronic illness?

I'm a loser, honestly. I do not like sleep overs and I like to have my me time when I don't feel good. For my birthdays, I don't really do much anymore. I would recommend doing something small and simple, and a time frame is an excellent idea - I agree Hannah! Sometimes people don't know when to leave or can't tell when you aren't feeling well or if it's been "too much". A time frame is an easy way to just eliminate the confusion. Also, my problem with birthdays is I always tend to get disappointed as I think I expect them to be so fun and happy. I also get let down, so I have learned to really not expect to much and sometimes just the littlest things that you do can turn out to be the best of times!!

Does anyone ever feel like they can't vomit when they are sick?
ME! ME! ME!!!!
Are we experiencing the same exact thing? I CANNOT vomit. I, too dry heave but but for the life of me, it is ever so difficult to throw up. Needless to say, I am utterly terrified of puking and the thought of it scares me, but I have never been able to! I hate that I sit and suffer with awful pain at times and I know I have to puke, but I just cant. I totally understand you feelings girl. It's awful.

My Question
What are all of you girl allergic to? Foods, outside and all? Do you avoid EVERYTHING that you are sensitive to or what is your coping mechanism for allergies? Medicine, etc?

Take care ladies! 

Friday, January 6, 2012

It's 2012!

Hey guys, its your every other Friday host, Hannah! I forgot the Friday before Christmas to post, hard to believe right?
I glanced through the other posts, I'm sick tonight so I didn't read through them too well, sorry guys.
My Christmas was good! I was able to do quite a bit the Friday before Christmas (went shopping with my mom then was out late that night), then we had company Christmas Eve morning, then I went to my uncle's, then to my grandfather's. On Christmas day I went to see my grandmother in the nursing home (she has Alzheimer's) and then to my cousin's Christmas dinner, and then to my grandfather's again. I was shocked that I was able to do so much!

New Years day I wasn't feeling so well, but my grandparents on my dad's side came to visit and that was very fun, we celebrated our Christmas with them then, too :).

Today, I am not doing well, I have a stomach virus so I'm like, Bleeeeh. It's so weird though, I almost never throw-up. I'll get the dry-heaves but I won't throw up. I usually end up wishing I could vomit just to get some relief but yet I'm terrified of it, because I'm worried if I do, then my Dysautonomia will be like, Hey! Let's make Hannah throw up all the time! I suppose that is my question, I know Logan and Michelle K have issues with vomiting, and Rhianne at times, but does anyone ever feel like they can't vomit when they are sick? It's a blessing and a frustration all at the same time- because the sickness takes forever to leave then haha.

Okay, question time, I hope I didn't miss any! There didn't seem to be too many from too many girls! But I am going back a couple weeks <3.

Rhianne: What did you get for Christmas? I got a recumbent bike :) I can go slow on it for about a half hour before I start feeling sick. I made it to two miles one day in about thirty minutes! I was so excited! I also got some clothes, curtains from my sister, and some survival stuff (I think I might be a borderline survival nerd. If I could, I would love to go put it into practice). And some other odds and ends. I am truly BLESSED!
What is your New Year's resolution? To be honest, I don't have one! I've thought about it but really, I always forget them- but in general, I strive for a deeper relationship with the God I serve, and more health! What is your favorite summer activity? Hmmm...Before getting sick, it would totally be swimming. Since getting sick, just sitting outside and watching the kid's play. :).

Miranda: Do you ever feel like there is a subwoofer in your body? To make sure I am understanding your question, I think you mean like vibrating or pulsating through the body...And yes I do get that, especially when I am dehydrated more than usual. Do you have any New Year's traditions? Before I was too sick, I'd always have friends over, now- not really anything other than staying up to watch the ball drop :). Do you get the hiccups a lot? Only when my acid reflux is bad. I wish I had a remedy to give you other than treating your acid reflux the best you can. There are home-remedies for that if you would like me to dig into my books and send you some, I know you, just like me are having a difficult time having your acid reflux adequately treated. <3.

Cheyanne: What is a fun way to spend your birthday when you have a chronic illness? For my 18th birthday, I just had two close friends over for lunch, and we were on the couch the whole time. I know when you are younger, it is harder to settle for those kinds of birthdays. I have had some bad experiences with parties and my sickness personally, so I am hesitant to have parties BUT everyone's different with how they tolerate things. If you think you can handle a sleepover, you could have a few understanding friends over. Or have a bunch of friends over but keep it structured so that people have to leave within a certain time, that way you can have a cut off. For me, I can usually hang out with people for about 1-2 hours before I start getting too worn out. An idea there is to go out to lunch or have a Birthday movie, etc. etc. Be creative though, and do what you feel is most comfortable for you, and don't feel bad for what you cannot do. <3.

Also, We should totally be "BIKE BUDDIES!" that's so cool that you got a stationary bike! and you go girl with the speediness, that's awesome :).

I see that some of you ladies are exercising more and I am proud of you all. I know it's hard to push through symptoms to do something that is suppose to help those symptoms in the long run.

I hope ALL of you ladies are doing well <3 

Have a GREAT weekend :)


Wednesday, January 4, 2012

My POTS feels more manageable lately.

I don't know if I am just used to it or not though. You know? I have been refraining from taking my BP and pulse unless I am actually feeling extremely bad from it.

I have been in so much pain this week. Somehow I keep hurting myself in my sleep. Nearly every morning I wake up and a different joint feels like someone has just been beating me up and it feels all bruised and such. I've tried taking aleve, but it does not touch it. This isn't like my usual pains I have been getting since April. I went running down the street and back. :) That went great other than about 30 minutes afterwards I felt that same weird pain up in my foot. In the past week it has been: my ankle, elbow, rib, foot. Basically the joint is sore/tender and feels like it got beat up for up to 3 days and then goes away. What I cannot figure out is why it only seems to happens when i am sleeping! It either wakes me up in the middle of the night or I feel it immediately when I wake up in the morning.

Everyone went bowling because my cousins that I have not seen in a long time came down from South Carolina. Obviously I cannot bowl because it causes pains in my arms. Plus, I kind of suck at it anyways because my arms are so hypermobile, so they just want to twist around and the ball never stays straight and goes in the gutter every time. While they were all bowling I went with one of my other cousins and did 8 dances on Dance Dance Revolution. I was proud of myself because I have not been that active in a long time. It was fun too!

Logan: 2500 calories? Seriously lol!! :) I haven't gotten that many calories in a day in nearly 2 years. I was thinking about going vegan...or mostly vegan because my mom kind of wants me to have a little meat. I personally do not care for it much except for McDonalds hamburgers.

Miranda's Question: Do you have any New Years traditions?
Not really. Some years we go see fireworks and other years not. :)

Rhianne's Question: Favorite summer activity?
Hmmm...I love going to the beach when I can.

My Question: What is a fun way to spend a birthday when you are dealing with a chronic illness?
My birthday is in 7 days and I am clueless on what to do.

God bless. xx

Sunday, January 1, 2012

Run! Forrest! Run!

I have been running a lot this week, either at the beach (I will make a beach video for you Logan!) or on wiifit. I can run for about half an hour on wiifit and 15min on the sand and I recover within minutes.

My week has been good. I have mostly just stuck around the house and played wii and stuff. On NYE I had my friend over and we had a barbeque at our house with a few families then after that finished up we went to another friend's party. He is spanish and a lot of the people there was. It was fun, the food was good and so was the vibe.

Then New Years Day I just hang around home with my friend before Mum and I dropped her back at her campsite, where we went for a swim in the river and sat around talking for awhile.

Oh yeah, I also went Boxing Day shopping on the 27th? I got a t-shirt, skinny leg black jeans, two cds (Lady Antelbellum and the Warblers) and a skirt. We also got some Christmas decorations because ours are getting worse for wear.

There was only one question this week which was from Miranda who asked if we have any new years eve traditions? And not really. For the last two years we have gone to the Spanish guys house, so I guess that is sort of a tradition.

Thinking of a question...



Okay, what is your favourite summer activity?

Mine is hanging at the beach, running, reading, watching movies and hanging with friends.