Wednesday, February 29, 2012

Hey Y'all

Hello! This is Michelle R. Cheyanne asked me to sub for her and here I am :)
Well some things have changed with me lately. I've been on Savella for the past month and I haven't really felt much of a difference pain wise, but I have lost all my Lyrica weight. haha
Anyways I've been experiencing high blood pressure, which I never had before, and my pulse has been 120 frequently. And my pulse never gets that high even when I exercise. So now I'm on Lotrel to help with that. I also haven't been able to not be nauseas. Everything I eat makes me super sick and my bowels are a wreck.
Luckily for me school is coming to end very soon and only 9 days til Spring Break!! And on June 2nd I'll be finished with school altogether. :3
I'm wayyy excited for that.
Anyone need a new book to read?
Try Extremely Loud and Incredibly Close. It's an absolute masterpiece. I promise :)

My question is: What settles your heart rate the best?

Question time!
Christine: First off Hi, I'm Michelle Rivera :3 And Well it's kinda hard confronting my friends so I haven't really said much to them.
Emily: Hi Emily :3 Um brainfog for me kinda sucks. I get stopped in my tracks usually. And recently I've had trouble speaking. I have to stop mid sentence to correct myself and to slow my words down.  I just forget too many things often.
 I hope you all have a great week, it's almost friday :)
Michelle R. <3

Tuesday, February 28, 2012

Christine: 40 something

Christine: I have dysautonomia, for many years. I am 44 years old and live in upstate New York, USA. Hobbies: knitting, crocheting, reading, cycling on the Erie Canal. I am on Social Security Disability Income and Social Security Income. I have stomach emptying problems, asthma, GERD, rheumatoid arthritis, osteo arthritis, fibromyalgia, mitral valve prolapse, ADHD, epilesey, allergies, high blood pressure, congestive heart failure, low body temperature, , sesitivity to temperature changes, sensitive to heat and humidity, and a few more. As I become older the symptoms appear to be more manageable partly due to knowing my limits. The biggest help was giving my disease up to Jesus Christ my Lord and Savior. Christ has made a differece in my life. He has given me the willpower to expose my nervous system to the things that trigger my nervous system into overload. Stress is a trigger for my dysautonomia. Recently, I have been under major stress. I am tryiong to lose weight and have been on and off of prerdnisone for the last three years which has not helped.

My question: Any suggestions for confronting friends who are doing annoying things that bother your dyautonomia?

Answers to blogger's questions:

How bad is brain fog and what do you label as brain fog? Brain gog ooops fog is troublesome. Wow did I just call that gog? My friends think I am in another world or seem very confused. I forget thiongs (things) easily and can't spell worth a hoot. I have to write lists for everything or I forget to do things. Sometimes I become lost in places where I have been many times. I mix up words in my conversations and or I don't remeber (remember) a conversation at all. Comprehension of anything is challenging. Thick presence felt inside sort of like tunnel vision and looking out at things.

Cheyanne: What is your prefferred exercise? Running: can't do it right now. Swimming: its low impact and tai chi.

Rhianne: Holistic medicine? I have several doctors who believe in a holistic approach to health. I wish insurance covered more like suppliments. I have food stamps which doesn't pay for all of my nutritional requirements so following a raw food diet is more successful in the summer months.

Peace and Joy in the Lord,

First post since going back to work

Michelle K here subbing for Rhianne.

The lovely Rhianne asked me to sub for her and I gladly said I would. I almost didn't as I am absolutely exhausted, but I really appreciate the opportunity to be involved in this blog. This is my fifth week back at work and it has been a bit of a roller coaster ride. Last week was a shocker of a week, but I am hoping that this week will be better. I haven't started work on my course, mainly because they haven't sorted out my log in details, but also because I have been flat out. Between work, family stuff, the occasional catch up with a friend, medical appointments and organising things for my upcoming trip (particularly medications) I have been extremely busy.

Work has been keeping me pretty busy too with home visits and they are usually in the afternoon/evening so I have been getting home a bit later than hoped some nights. Regardless of what time I get home, I am exhausted each night after work. I have been pretty bad as a result though with keeping up with my exercise routine. The other reason I have been particularly bad with keeping up with my exercise routine though is a lack of energy due to low food and fluid intake. The low food and fluid intake has been one of the reasons things were particularly bad last week. My nausea levels have been intense and I have had zero appetite.

I saw a new Gastroenterologist recently and he had no interest whatsoever in what is causing my nausea and vomiting and didn't take much of a history. The only option he gave me was to follow up on a medication known as Cisapride. It has been pulled off the market in the US due to cardiac risks and a few sudden deaths that occured. It is available where I am in Australia, but only under a special access scheme with government approval. The gastroenterologist won't organise it though unless my cardiologist clears it, I haven't spoken to my cardiologist about it.

I was reluctant to consider it as an option given my vomiting had improved but then not being able to eat and drink much can't be good either. It's a bit of a catch 22 situation. I am in no rush to make a decision though. I will talk to my cardiologist about it at my appointment on Friday and if he clears it, follow it up after my trip. The last time I saw my cardiologist, he put me on a medication known as Ivabradine. It lowers the heart rate without lowering your blood pressure. I think it has really helped me in terms of my vomiting, I am not sure how that works (as it doesn't really makes sense) but usually with how minimal my fluid intake has been, my vomiting would have been much more intense by now.

My vomiting hasn't stopped, but it's only 2-3 times a week now compared to what it used to be. Given, I landed myself in hospital just before the medication due to my fluid and salt levels dropping, the Ivabradine is the only explanation for why the vomiting is as good as what it is. Anyway, I better move on to the questions as I have rambled on a bit more than I planned on.

Rhianne's question:
I definitely try to look at my health holistically, I just wish sometimes that Drs would look at things more holistically. They seem to be so caught up in their own specialties and don't look at things from an overall perspective. Even if they could look at the physical and emotional side of things a bit more holistically as a starting point it would be good. Half the time, they don't even look at the physical side of things from an overall perspective and just focus on their own speciality and don't know how to look outside the box at all.

Cheyanne's question:
I don't really have a preferred exercise, but I do have a prescribed routine from an exercise physiologist that incorporates a pilates floor routine (using a resistance band for most exercises) and recumbent bike pedals. The floor exercises really hurt my hips. I would rather be playing a sport like badminton but just not able to with POTS. I like to swim but just don't have the time and energy to do so very often. I will stick with my prescribed routine for now but with my energy levels lately, I haven't been able to keep up with it like I should.

Emily's question:
Brain fog is something I always used to claim didn't happen for me but I think I was in denial about that one. Sometimes I can forget what I was saying or have a bit of difficulty concentrating. I tend to write lists to remember things. I always was a list person though and with my work in particular I have to juggle several tasks. It's hard to really say how bad it is, it probably varies.

Welcome to the blog by the way!

Take Care everyone
Michelle K

Saturday, February 25, 2012

Hi! *waves* New person, here!

Hi, everyone!
I'm Emily. Not really sure if I'm doing this right or not. *sheepish grin* I'm 17, and I have POTS, and some other crazy stuff, like Hypertrophic Cardiomyopathy. =P
Um, I don't really know if I should be starting with an introduction or just throwing my life into the ocean without a care, so I guess I'll do both. I'm an avid book reader, I write a lot, and I have three younger siblings. I want to become either a chronic illness counselor or a college-level English professor, though I think a lot of my family still thinks I want to be a cardiologist.
I've actually been doing pretty well, symptom-wise. I dunno if it's like this for everyone, but usually, I'll have some symptoms 24/7 but on the lower level, like 4-5/10, and then I'll get "episodes" where they ratchet up to like a 10. I actually made it through an entire week of school without leaving early! (I think. With the brain fog, I have trouble remembering if I made it to school or not.) I only take 3 classes for school: Honors Physics, AP Lit, and Shakespeare.
The past two days, though, have been pretty crappy. I've caught a bad cold from my aunt, so my blood pressure's legit been EVERYWHERE. Who needs roller coasters?! Haha. Lots of chest pain, too, which is a little unusual because it's been a good couple of months since I've had it. Usually it's just bad discomfort, or other symptoms. =P Last night, I woke up at around 3am from a nightmare (side-effect of a med, ugh) and I was having difficulty breathing because the chest pain was so bad. *shakes head* Oh, well. I mean, I've been doing pretty well, otherwise. *wry grin*
My siblings are always so busy. I dunno how they do it. 0.o My sister's at a hockey game tonight, but she was out all day today shopping, and has been in and out of the house all week. My youngest brother had two sleepovers in a row, and my other brother had two basketball games today. *shakes head* Whereas here I am-I go to school for three hours and I'm wiped out. I went to the library yesterday for an hour, then came home and read all day, and I'm literally set to sleep for 100 years. It's exhausting dealing with the real world!

Okay, so Rhianne told me the questions I need to answer, so I guess I'll do that now.

What subjects are compulsory for you? 
Huh. Okay, well, right now, I technically only need half a semester of English, and a year of Math. My school's been pretty awesome, so I've been lucky with extensions, absences, etc. I really, really love English, though, so I'm taking AP Lit (not taking the final test, though. I just found out the college I'm going to doesn't accept them, so I'm a little ticked. I took the AP Lang test last year, which was like, $90, and I got a 4, so all that studying was for nothing) which is an okay class. I'm not a big fan of the essays-brain fog and writing does not mix. I turned in one to my teacher once, only to have him pull me aside the next day concerned and frightened, because I had written one sentence three times and then I had added another word at the end two times and my handwriting went from really, really neat (people think my papers are typed when I write them) to spaced out and kinda like how a toddler's handwriting looks. He thought I'd had a stroke or something. I love the books, though. We just started reading Invisible Man by Ralph Ellison (recommend it to anyone who reads) and I devoured it.
I'm also taking Shakespeare, which is just-you know, studying his works and stuff. It's really easy, and fun. My teacher's a blast. In March or April, we might be going to Chicago to see a few plays. I'm excited and nervous. I've had episodes hours away from people who actually know what to do, and it's not fun.
Aaaand then there's Honors Physics, which I'm taking for math credit. Pre-Calc would've been too hard to keep up with when I'm absent every day. Now, don't get me wrong. LOVE physics. It's really interesting-especially when using it with outer space-did you know there is gravity in space? But my teacher? He doesn't make it easy for me. NO NOTES. Absolutely none. I'm not even kidding. It's all labs. He writes the equations up on the board for tests and stuff, but doesn't give notes, and no one writes them down. They're there to hear him explain how to use the equation. More often than not, I'm not there. -_- So. Yeah. Not my favorite class.

What is your preferred exercise? 
Er, okay, so I wasn't sure if this is exercise, like, walk/run/strength/yoga etc, or exercise, like, math problems, so I guess I'll answer both?
Exercising like runrunrun isn't much of a feature in my life. I try to do ~30 seconds to a minute of plank/squats/push-ups, and stretches every morning, but if I try to walk my dog, you'll find me collapsed in my room 5 seconds upon my return, or sometimes even in the bathtub, blinking uncertainly-I'll have fallen in while brushing my hair back. My doctor tried to sign me up for Cardiac Rehab, which lasted a few months, but did nothing to help at all. It was funny, though. There was me, then about 9 men at least 5 times my age. =P I've always wanted to take a kickboxing class, though, and I used to do softball and fencing. I miss softball like a missing limb. *sighs*
Now, if we're talking exercise, like, class, or question, or something-you know, I'm not really sure what it could be, but-*shrugs* My favorite class would have to be Shakespeare right now. Last year, it was probably Applied Medical Research, which was like a pre-pre-med course. It was funny. We did EKGs, and my teacher was showing everyone the pattern for a heart attack, which looks like a fireman hat! And everyone's was obviously normal...And then there's me. Mine had the fireman hat! And they tried it three different times, but I still got the fireman hat pattern. So this one kid freaked and almost called 911 before I told him that was just my normal setting. They were all stupefied! I really like any writing, and I like learning in general, except maybe geography. =P

That's it, I guess! I hope I did this right! (Almost spelled that 'write'. Stupid brain fog.) I hope all of you are doing okay. =)

Oh! My question:
Hmmm. Brain fog. How bad is it for you, and what exactly do you label brain fog? 
     I ask this because mine's always been really bad, to the point where I've talked to my aunt for ten minutes thinking she was a random stranger who was crashing my family reunion. I can have a conversation with someone, and five minutes later, not remember what was said. I don't remember what I've done throughout the day by the time it gets dark out. My weeks are blurry. Total blankouts aren't unfamiliar to me. But I also stutter/slur my words at times, have become familiar with spoonerisms and have trouble concentrating. *shrugs* A lot of medications I can't take, because of a congenital heart defect I have left over.

Thanks for reading!

Thursday, February 23, 2012

Sick And Stressed

These next few months are going to be crazy! I've been sick pretty much all week, so that's not a good start, but I do have some good news: we might have found a new house! It's absolutely gorgeous and literally like 20 yards away from a farm. I've had migraines off and on all week, I think it was stress that triggered them then sensory overloads made them worse. And since I have all of these lovely health problems the only thing I can take is Ibuprofen for both my cold (I think it's a cold) and migraines.

Tomorrow I'm going to be working with my Algebra II teacher, so she can tutor me and get me back to the rest of the classes pace. On a side note, the weather for the past few days has been amazing. But with nicer weather comes allergies, so I'll have to start taking my allergy medicine again.

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

Cheyanne: What is your preferred exercise? I don't have one, since I don't really exercise, but during the summer I like to swim.

Rhianne: What subjects are compulsory for you? Because I'm getting the highest diploma my school offers I have to take English (4 years), Math (4 years, including pre-calculus), Science (4 years, at least 3 have to be labs), Foreign Language (2 years, but I'm doing 3 of German), Bible (4 years), Understanding the Times (it's like world religions), History (3 years), Fine Arts (2 years), Electives (2 years) and there's a few more that I'm forgetting. For my senior year (3 more months!) I'll be taking some classes at my local community college,

Hannah: Any advice for trying to form a good sleeping habit, without 'killing' yourself in the process? Nope :) I have the same problem.

Until next week, Miranda

Wednesday, February 22, 2012

There is only one great physician and that is God.

My geneticist appointment went horrible! The doctor knew nothing about EDS. She claimed that people with EDS do not have chronic pain. She also did not even do the Beighton Scale on me. And she barely looked me over. Now I am going to see someone at Shands. 

I have been trying to do more exercising. My POTS does improve with exercise. My pulse was 85 standing after doing the stationary bike for 25 minutes. I did get extremely sick afterwards before my pulse improved. I think I pushed myself a little too hard. My stomach hurt so bad, I was heaving, my blood pooling was outrageous, I was dizzy, etc. After all of that wore off I felt good though. Yesterday my mom and I did a 10 minute exercise video. I managed to mess up my hip in the process. 

My Question: What is your preferred exercise?

Hannah's Question: Any advice for trying to form a good sleeping habit...?
Try to go to sleep and wake up at the same time everyday. If you have horrible insomnia like I used to, then talk to your doctor about a medicine that may help with sleeping. I am on a low dose of Doxepin and it knocks me out at night. It is actually an Anti-depressant. I was put on it for pain and to use the drowsiness side effect to help me sleep. I don't have any weird reactions with it at all (I usually react to everything).  The bad part of it is that it doesn't work for my pain. 

Rihanne's Question: What subjects are compulsory for you?
To graduate high school I need: 4 English credits, 4 Mathematics credits, 3 Science Credits (2 have to be lab sciences), For social studies I need 3 credits, 1 World Language (if you want to go to college), 1 Fine Arts credit, 1 Physical Education credit, and 8 Electives.  

I hope y'all have a great week. 
God bless!
-Cheyanne :)

Tuesday, February 21, 2012

The dimension of health

So nobody understood my question from last week so I shall explain it right here, right now. By viewing your health in a holistic way you are taking into account all the dimensions of health which is physical, social, spritual and emotional. Physical is how your body is working and all that stuff. Social is your ability to maintain relatinship. Spritual, having a place in the world. And emotional is the way you deal with situations and so forth.

So do you guys get my question now?

My week has been pretty boring. I just go to school, gym, homework, bed, I apologize for the fact that it is boring haha.

I guess I will go onto the questions:

Logan I am fine with the person joining the blog if she wants. I am thinking that until Francessca wants to come back we should just alternate subs on that day? So like Michelle and Tonya

 Do you all have any of the sweating issues and if so what kind of deodorant do you use? Yes, I sweat ridicolous amounts at the back of my knees and I always feel sorta sweaty. I use a rexona hypergellic once.

Hannah: Stay up for as long as you can then get as little sleep as possible, wake up at a normal time, do lots during the day and then go to bed at a normal time that night.

From my Mum who is a teacher and wants to know the answer: what subjects are compulsory for you?
In 7,8,9, 10 maths, science, history, geography and english were all compulsory now I am a senior the only compulsory subject is English

Friday, February 17, 2012


Hey guys! I am terribly sorry but I didn't really read through your posts (besides what I had read earlier this week) because I've got me a case of vertigo.

I've been getting sick a lot lately. Aside from being able to do activity for a few days then crashing, I keep getting a virus, over and over again, I think I've had it two to three times now. I know it's a virus because my mom keeps getting it, my dad now has it and her daycare kids keep getting it. So maybe I should lock myself in my room with my windows open to let all the nasty germs out until everyone quits getting sick- haha.

This sleep schedule stuff is really messing with my immune system I think. I notice that when I do not allow myself to sleep in to make up for lost sleep the night before- or when my insomnia is just outrageous for me- I get sick. I can usually know right around the time too, just based on how long I haven't been sleeping 'good'. And that concerns me with this sleep stuff because I am allowing myself to sleep when sick, but then I have to almost start all over- and then I get sick again, and the cycle continues haha.

So my question for you guys is; Any advice for trying to form a good sleeping habit, without 'killing' yourself in the process? 

I know, I had a short update- sorry, hopefully next time I'll feel up to a better post :).


Miranda: Do you have a normal sleeping schedule? No- haha. I am *trying* really hard to get into one though, a goal would be to be able to be asleep by 9 or 10 and up by 8 or 9.

Cheyanne: Do you all have any of the sweating issues and if so what kind of deodorant do you use?
I am going to have such an unladylike answer to this question! YES! I am constantly wiping sweat from my underarms and complaining about the foul odor. It's not even like a normal odor either- again, I know this is so unladylike. I am into using natural things- so I don't use antiperspirants, or things with aluminum I believe it is? I use either homemade deodorant (hoping to try a recipe Logan shared with me!) or as natural as I can get- like Tom's brand- however, it doesn't stop the sweating, it just is an attempt to cover the odor.

Logan: I am totally fine with it if you ask the woman from your Church about joining our blog :).
 How do you cope with bad memory? What tricks do you do to help yourself memorize things? I wish I had a good answer! Honestly, I think the biggest thing is exercising my brain- reading even when I forget what the last page said (even the last sentence) and doing things that make me think- Like right now with my worksheets, they have questions, and I have to look back over what I read to find most of the answers, that is a good exercise for me. Other things are memory games online. And if it's information you are trying to remember- like a history lesson, a study, etc. I am a note-card fanatic. I am trying to memorize the ten commandments- and eventually the reference to each and the complete verse to each- so they are posted on note cards on my wall in front of my recliner. 

I know you are into Bible studies, etc. So some good websites where you can read some information packed pages, without having to sit down and read a whole book are;, and, or RZIM might be .org, I cannot remember! My brain tonight- Ahhh! I think Beth Moore even has some on her website, which I can't remember either- but google should help you find it if you're interested!

One more thing- I Highlight, Highlight, Highlight, Mark, Mark, Mark... Whenever I am reading something :).

Rhianne: Do you have a scale you rate your days on? I don't but I LOVE that idea- might be a good help to journal it too, since Doctors ask a lot for journals of symptoms!
Analyze your health in a holistic way (mental, physical, social, spiritual). I am not entirely sure how to answer this question! I do not cling to holistic medicine, however, I do like that with holistic treatment, more natural remedies are used. I am a follower of Jesus, and I strive to be healthy in all of these ways, spiritually- by clinging to God, physically, by taking care of the temple God gave me (my body) and I feel I could improve in this area by eating more vitamin and nutrition packed foods. Socially, I am pretty isolated right now with my health- however, I am learning to be more social with my illness by allowing friends to come see me even on my bad days (and it seems like I keep making "friends" in random stores!) though I do have my social anxieties. Mentally, I feel this intertwines with how I am in my relationship with Christ- through my relationship with God, I am working on my mental hang-ups! I hope this was an understandable answer with how my brain is functioning tonight :).

 Until next time...
Feel good!!!!

Thursday, February 16, 2012

Tomorrow Is A New (And Busy) Day!

Hello everyone! I should really start posting earlier in the day, so the posts aren't so short and I'm not so worn out, but here it is.

This week has been, yet again, a whirlwind. Between classes, homeschool, feeling bad and a looking at houses, I can't wait until Saturday! Tomorrow is going to be a very hectic day for me; my school is having its annual spaghetti feed/auction. The choirs will be performing during it and I have a solo, so I will be running back and forth, as I also have to help serve the food with my fellow NHS members. At least we have a three day weekend, so I’ll be able to recover somewhat and make the video that I've been postponing.

I did post on my blog, if you'd like to see a somewhat more detailed post. I'll skip to the questions now.

Logan: I’m fine with the new girl. That’s awesome that you found her!

Rhianne: Analyze your health is a holistic way. I have no idea what you mean by that.

Cheyanne: Good luck at your appointment! Your question was: do you have any sweating issues and if so what kind of deodorant do you use? I usually don’t, unless I have a hot flash. I use Dove Powder Fresh (I think) mainly because I can’t have something strong scented without giving me a migraine. I know there are some clinical strength deodorants that you could try.

Until next week, Miranda.

Wednesday, February 15, 2012

Geneticist tomorrow!

I am so excited!! I may finally have my answers...probably not all in one visit though. If it is EDS, which it probably is, then we don't know which side it is coming from.

This weekend I am hoping to go check out another school that I may go to next year. Ever since I've been back, everyone hates me it seems. I will speak to people and they will just down right ignore me. At first I thought it was a coincidence, but it has happened too many times with too many different people. The only thing I can think of is that someone may have started a rumor or something about me while I was gone for a whole school year. I think that because nobody will even come up to me except a new girl. A new girl would not know about an old rumor. You know? I have pretty much stopped trying because it has been this way since late  August. Either everyone is afraid of me now or someone started a rumor. I cannot think of what else it can be. The school I may be going next year to has over a thousand more students than the high school I currently attend has, so that is nice. I also would be able to take more classes there. I can only take one now because each class is an hour and a half and you only have four periods. There I would take like 3 classes 45 minutes each out of 7 periods!

Hannah's Question: What is your favorite "I'm sick but need out of the house" activity?
Probably going to the grocery store with my mom. I don't go out much. Oh, and congratulations on the online school! :)

Rhianne's Question: Do you have a scale you rate your days on?
Not really. I do have a scale that I rate the severity of certain symptoms on certain days though. (just 1-10). I guess most of my days would be C-E...but when I can't walk much it usually is not from POTS it is from EDS pain.

Logan's Question: How do you cope with bad memory?
My memory isn't too bad most days. I do have bad "brain fog" days and I try to just work through them. Also, I am happy you found someone you can relate to in your area! :) I wouldn't mind if she joined the blog.

Miranda's Question: Do you have a normal sleeping schedule?
Actually I do...only because I'm on a medication (doxepin) that allows me to sleep all throughout the night. I go to bed at 10:30-11 and wake up around 9. When I forget to take my meds then I do not have a normal sleeping schedule and I most likely will not sleep, but 2 hours or so.

My Question: Do you all have any of the sweating issues and if so what kind of deodorant do you use?
I seriously will take a shower and stink 20 minutes later. :(

I hope y'all have a good week! God bless.


Tuesday, February 14, 2012

Be my valentine?

So guess what guys? I was going to make a video today. I put on a pretty pink dress to make a valentine's
day video, I filmed it and my iPod decided to be evil and it was out of sync. You guys miss seeing me in a pretty dress.

My week has been been alright. Wednesday, I went to my friends house with all my friends. We all chipped in for food but it was the sort of thing I don't eat. We went in the pool and then I decided to eat some dorritoes then I ended up choking and throwing up in my friends bushes.

Friday I went out for dinner and I walked the dogs. That night I was really sick and woke up at like two and went back to sleep at five. I think I spent an hour of that lying on the bathroom floor and another hour talking to Hannah. :)

Saturday and Sunday I did regular stuff. Yesterday I was really sick in the afternoon and didnt do any work in class so I had lots to catch up on plus homework so I had to wake up early and do more. GREAT!

I also signed up for the musical. I don't know how it I will go in it.

The questions:

Logan: How do you cope with bad memory?? Like what tricks do you do to help yourself memorize things? I make a to do list for everyday so I dont forget to do things. I revise work constantly and never stop learning and keep my mind active with things like sudokus.

Do you have a normal sleeping schedule? HAhaha, no. I wake up early and go to sleep early. I am a grandma. :)

My question is to analyse your health is a holistic way, (so mental, physical, social, spritual)


Friday, February 10, 2012

Sleepy Sleepy

Hey guys! I'm a few hours off, but I thought that it's better late then never, right? My sleeping schedule is incredibly messed up, so I've been going to bed really early. I'm still having issues with joint/all over pain, but that's generally manageable unless it's raining or something. And as usual, my life is pretty boring, so I'll jump to the questions. :)

Logan: I miss you too! I'm always forgetting to skype you; but that brings us onto your question, which was: how do you cope with bad memory? As you can probably tell, I don't really cope, I just kinda go with it.

Rhianne: How do you rate your days? I usually rate them on a 1-10 scale, 1 is no symptoms (which is never) and 10 is pretty much unresponsive (which I have been like before). And do your legs feel itchy when you have blood pooling? They don't really feel itchy when I have blood pooling (they're always itchy!) but I get like this numb pain.

Hannah: What is your favorite "I'm sick but I need out of the house," activity? It's usually just going to school (lame, I know) or going with my mom to the grocery store.

Cheyanne: What is the highest your heart rate has ever gotten that you have been aware of? I think around 220-ish. Mine goes really high sometimes.

Michelle K: Do you find yourself tempted to take on way too much even though you know realistically you shouldn’t be doing so much? Yup! I do dumb stuff like that all the time, then regret it, but can't back out.

My question: Do you have a normal sleeping schedule? 

Until next week, Miranda

Tuesday, February 7, 2012

Getting myself some education.

I will start with the posts before launching onto my week. (BTW, what do you guys think of the new pretty layout? Tell me if you want anything to change).

Cheyanne: I related when everyone else was sick and you just thought your Gastroparesis was acting up. I think I've done the same in the past.

You asked what is the highest you know your heartrate has been? I don't know where Mum put my medical folder so I can't let at stress tests, halter monitors and stuff. I have seen it on my hospital charts in the 240s though, when I have been really unwell and they have done posturals. 240s is just ridicolous.

Hannah: what is your favourite i'm sick but need to get out of the house activity? Playing the backyard with the dogs. :) does the backyard count as being out of the house?

My question: Do you have a scale you rate days on?
I try to keep track of how many A (normal person) B (slightly strange but really good) C (typical day) D (Bad POTS day) E (ARGH! I HATE MY LIFE! I CAN"T WALK! MY LIFE IS OVER). I haven't had a E day in ages, I am bouncing between Bs and Cs at the moment which is okay.

My week is that on Wednesday I went downtown with my friends (I only have two periods on Wednesday). They had all you can eat pancakes and I just had a milkshake. We went via the toyshop and the library. Extension English was good that day!

Thursday, can't remember really what I did. On Friday my Dad was my casual teacher for double biology and I counted 3794 grains of rice with my friend. I hate you Dad! Kidding but I am not letting you live that down.

Saturday, my friend was having a sleep over because one of my friends is leaving school to do a course in hospality. So there was a going away party. I managed to go for a few hours but it was hard.

Sunday, I helped clean out the garage a bit and did some homework. The usual.

Yesterday, I went to school, then I went via my friend's house and saw all her puppies they are gorgeous. I love dogs. :) Then I went to the gym, where I worked out and got fit.

Today, I went to the library after school then hung out with my friends (one who was on her lunch break).

Tomorrow is Wednesday again so I only have two periods, I will probably go to my friend's house and swim his pool with some of my other friends. And we will probs get milkshakes. I love milkshakes haha.

Wait I almost forgot, last Friday I managed to do an obstacle course in Drama BLINDFOLDED. I was being helped by my teacher and my friend but I still managed to do it. I only sorta tripped once.

LOGAN! YOU BETTER POST TOMORROW! (btw my brother saw the video of you putting the tube down your throat and thought it was a magic trick. lol.)

Friday, February 3, 2012

Happy Friday!

Hey peeps! Hannah here,

There are some new things happening for me! I am enrolled in the online School of Biblical Evangelism (see, If you've ever seen Way of the Master with Kirk Cameron and Ray Comfort, you may know what I am talking about... it has no deadlines, it's not accredited, but it's great. It teaches you how to evangelize like Jesus did, and my goal in life is ministry, so I cannot even begin to express my excitement :).

Aside from that, I don't remember if I posted about me seeing the sleep specialist, but I am suppose to start waking up earlier (and keeping a sleep diary) so I get tired enough I actually sleep at night. I am also suppose to try melatonin, my nurse called me and told me there was no evidence that they found that it should lower blood pressure, and that I should check with my cardiologist, I explained that there isn't much known on POTS itself, that I learned this from POTSy people. For me, I'm definitely not against taking it, I take it once every few months when I'm in a total crash from not sleeping, but it gives me a hangover and I usually only take it when I have a good blood pressure. But, I am going to try taking it on a consistent basis and see what happens :).

Otherwise, I am just hanging in there. I am in a bit of a flare right now, yesterday and today I've been waking up exhausted with pain and being POTSy. But there is still improvement from where I was this time last year, so- to count those blessings!

Question Time :)

Michelle K : I hope work and school is going well for you hun :) How inspiring that you are trying again! I am also sad to hear that you vomited after a 7-day free streak of it! Your questions were; Do you suffer from abdominal pain and if so, is it something that's been investigated, or is it just a POTS thing? I do, usually only when I am having issues with digestion. I find it is worse when I am dehydrated, otherwise, my biggest issues now (though in the past I had a lot more issues in that department) are acid reflux and esophageal discomfort, though there is some improvement with diet changes (like being gluten free) as well as when I can get nexium samples since our insurance won't cover it. Do you find yourself tempted to take on way too much even though you know realistically you shouldn't be doing so much? Yes! I usually start doing something with a goal and over-do it and then get too sick to complete the goal.

Erin: Hey, that's great that you are now getting your injections! Keep us posted! I am just realizing I may have missed one of your posts, I am sorry! What do you all take for colds (minus antihistamines and decongestants you can't take with your medication)? I haven't gotten a bad cold recently to really remember, but vaporizing machines are great, menthol rubs, teas, juices, honey, lemon, etc. I also love spraying eucalyptus oil for different purposes, but that's one it could serve! Also, you can try putting the menthol rub on your feet to help with a cough. I hope you get to feeling better!

Rhianne: You are back in school, yay! I am sorry though that you are having a difficult time physically! I feel for you! Your questions, How do you stop yourself from overdoing it? I am not sure I've figured this one out yet! Sometimes I just say, okay, I need to stop or I'm going to make myself sick. But really, I am not sure! Do your legs feel itchy when you have blood pooling? Yes! Sometimes that's how I know I'm having it, the itch is like a warning to me.

Cheyanne: Going gluten free at first is horrible! I agree! It wasn't until recently I started enjoying things again (in gluten free form) like spaghetti, donuts, stir fries, etc. You should send me a message, I might be able to throw some ideas your way. I still eat at McDonalds by the way, as far as I know their fries are gluten free (not positive) and I may eat a chicken sandwich or burger with no bun but with the fixings. Your questions, Does being on your period set your POTS off? Yes! My menstrual cycle definitely worsens my POTS, seems like it makes each symptom more worse. Especially stomach upset and dizziness, headache, which are probably the most annoying and more difficult. What's the highest heart rate you've gotten that you have been aware of? Honestly, I don't know. I have such poor memory I cannot remember. I know within the past few months, it getting into the 150's was scary for me simce it would happen when I walked. Also, my breastbone doesn't protrude, I think it's good that you are making sure it isn't Marfans and not just EDS characteristics.

That is it for the questions, and my question is, What is your favorite, "I'm sick but I need out of the house," activity? mine is probably going through a drive-thru or going in my wheelchair to a small store.

Have a lovely weekend :)

Thursday, February 2, 2012

Posting late! So sorry.

I didn't feel like posting last night because I was super busy with school/church/etc. But I didn't want to not post, so I am posting late. :)

Nothing much has changed with me. Apparently I had a mild stomach bug for a few days, but didn't know it until everyone else in my family got it. I just thought it was my gastroparesis acting up because that is how I usually feel when that happens.

Now to the questions...

Michelle's Question: Do you ever find yourself taking on way too much?
Occasionally. My body rarely even gives me the chance to take on too much. By noon I start declining and by about 3 in the afternoon I'm done for. I try my best not to do more then I can handle.

Rhianne's Question: Do your legs feel itchy when you have blood pooling?
My blood has been pooling pretty bad lately, but no my legs don't get itchy when that happens.

My Question: What is the highest your heart rate has ever gotten that you have been aware of?
Mine is 171.

God bless, I hope y'all have a great week!