Friday, March 30, 2012

=)

Hey peoples! Hannah here!

The past couple of days have been exhausting, I haven't slept in my own room the past two nights because of... (Ahhh!) Spiders! So, today my mom went clean crazy in my room (I love that woman, she's so sweet!) and declared it "Spider Free!" So, I am hoping to get a fair night's sleep :)

I also decided to take on a time consuming project. I've been on a "recycle crafts" kick and so today I worked on making a container out of old magazines. If you look up Magazine garbage can you will probably find it... That's where the idea came from but mine is much smaller and will probably function as a pen holder or other small things once I'm finished. I feel excited to be doing something productive!

One of the questions is in relation to what I was going to write about next and it's from Cheyanne: Do y'all feel like you are getting worse? Not necessarily. I'll explain :). For a while I felt like I was just going down hill, and end of March-beginning of April, after starting an SSRI, I felt great improvement. Then there were bumps in the road of course, but I was doing pretty well. A year later from my hospitalization in March of '11... I can say I am amazed by my improvement. However, I feel like after having much improvement, I am kind of stuck at my symptom level. But that doesn't mean it's going to stay there, and I hope it changes for the better. I don't remember if I posted about it on here, but supposedly (At least with some POTS patients) there is a "peak" in the symptoms, where you keep getting worse until you hit your peak, and then you start to get better. I think for those of you who are young-mid teens, you may reach your peak and then see improvement. I am not sure if that's what happened to me or not (I do believe this information was more based on POTS developed during puberty but not positive) because when I was 17 was when I started my SSRI, and the period when I went off an SSRI, I felt very horrible. But, no matter what it was, that "peak" thing can still serve as a hope. And even if that's not the way it will happen for all of us (still not sure it even happened for me- I kind of think at least a chunk of it was due to the SSRI) there is still hope because we grow to learn more about what we are dealing with and learn new coping strategies.

I owe God my deepest and sincere gratitude for the improvement I've seen. God is good!

I am also sorry to hear about things going on with you Cheyanne with the possible arthritis, etc. I find that interesting because POTS can be linked to autoimmune diseases, so perhaps that is something to continue looking into, or perhaps that just may be something you feel is already figured out!

On to s'more questions;

Erin: Do any of you have narrow pulse pressures? Yes! I do get narrow pulse pressure and it does not feel good so I am sorry to hear you are experiencing that as well as high blood pressures mixed in. What I do is I always salt (not a lot) and water (chug) (even if the bottom may be on a higher than normal side for me and top on a lower side) however, I am not sure if I'd be giving you bad or good advice to suggest that because of the highness of what your lower number can get too. Perhaps you could test run it when it is in the 90's on the bottom (I do believe I have done it in the 90's) if your top is lower and see what happens, however, you are a smart girl, use your discretion and be safe :)
Also, I am sorry to hear about your GI symptoms hitting you- I know that's yucky... I have no idea what my GI has been doing, suddenly seems like mine are changing up their game a bit! Maybe it's in the air? ;-) But seriously, I hope you feel better girl!

Logan: What was your favorite "ladybug" or moment of joy this week? Probably my parents' selfflessness in helping me be comfortable while my arachnophobic self steered clear of my room. Sweet question by the way! Also,  Can you guys vomit silently? I have vomited in some time, but I do not believe when I do that it is silent. I think I'm more of a dry-heaver at times.
I hope things continue to improve with your feeds. Every bit of progress counts! =).

Miranda, I do not believe you asked a question, but sorry to hear you are "Cardiologistless" for the time-being. I hope Dr.Grubb helps you tons! You see him in April right?

I am not sure who asked this question, but What is your favorite color? Lime Green :) Love it! Also, I'm sorry I'm not sure who posted (the lovely Francesca or one of our lovely subs maybe?) but I hope things with your testing helps with your day-to-day life for the better!

Rhianne: Do you schedule your time? No, haha. I think it's great that you can though! I usually just think "this is what I want to accomplish" and usually I only accomplish some of whatever it was!

Also, your question about Cain and Able, I'm going to give you a link to a site I love that answers that question; Click Here Also, always feel free to message me with questions, I don't mind one bit, I'm the type of person that loves those kind of conversations :)

My question: How do you guys do when you sit down/lay down to read? Random question I know, but I was wondering because, when I read, though I may find the book very interesting, because of being in such a still position (I assume), I start to dose off (as hilarious as that may sound) and then I'm fighting it like "Noooo I want to read this book!"...  Though sometimes I can read just fine! How about you guys?

You guys have a fabulous weekend :)
Until next time...

Thursday, March 29, 2012

Hey guys it's Rhianne posting on a what...Wednesday? I just like confusing you guys. Kidding I am subbing for the lovely Cheyanne.

I couldn't post on Monday. Too. Much. Homework. Not. Enough. Time. You guys know how it is don't you? Anyway, I have had musical practice and stuff on as well. Plus going to the gym.

My current goals:
1. go to sleep at nine thirty and wake up at six thirty (nine hours sleep)
2. Eat healthier
3. Run 2k

Working towards them as hard as I can! My health needs to be a bigger priority then school and I think that's where I have been going wrong. I have been putting all my energy into getting good marks and crap and been neglecting the little pots that live in my brain.

Anyway, I have four flipping assignments due week 2 next term. great.

I've been reading the bible, and all I keep thinking is why did Cain kill Abel? Maybe I missed something there.

The questions:

I can't vomit silently Logan. And ladybug moment haha, um, seeing my guy friend for the first time in months.

And I have gotten better Miranda. So much so.

My question: do you schedule your time?
I am very organised with my time. I am like now I am blogging, and then I a, cleaning
my room. I map out my whole day. I STICK WITH THE SCHEDULE DESPITE POTS! Haha that bugger never going to stop me

Monday, March 26, 2012

Sunday on Monday

Hi friends. It's been a good week, yet frustrating week.
I have been feeling sort of blah for the past two weeks. My fatigue is taking over, headaches are increasing, and nasty G.I symptoms. Bummer.

The hardest part for me (and most of us I believe) is when we start to feel good and then all of sudden, we have a bad day. It's SO difficult for people to understand that it's real. Our bodies can change and symptoms can come on so suddenly. It's not laziness, it's not that we just want to sit in our house and do nothing. Trust us.

...I hate that part of POTS/EDS etc

Positive of the week - I went to see The Hunger Games. The book was way better and I didn't like how they changed some of the parts, especially the MockingJay pin. I won't say anymore if you haven't seen the movie or watched the book. If you are still pondering on whether to read the series... DO IT! It's amazing and addicting.

Questions

Do you all feel like you are getting worse? No. But, I do get WAY worse during the summer. My doctor even warned me and said "I know you've been doing great, but just take it easy and be careful this summer. If you need IV fluids or you need to come in to see me sooner, just call! The heat absolutely irritates my body like no other.

Can you guys vomit silently? I have a fear of vomiting. Literally. It terrifies me. Plus, I rarely do. BUT if I throw-up, you better believe it's loud. haha

Do you sometimes feel better after a faint? I use to have hypotension, but I don't anymore really. I don't faint. 

Take care everyone :)
xoxo
Erin.

Thursday, March 22, 2012

No Breaks!!

Hey guys! 

Today I had a few classes then I had a concert to do for choir, which I also had to serve food for; I am exhausted so this post might get a little space-y, so please excuse it. On Wednesday I went to my psychiatrist for a check up (and because I feel like my meds that I’m on are losing their affect) so he added Lamictal. It is a drug used for people with epilepsy, but can also be used to “used to increase the time between episodes of depression, mania (frenzied or abnormally excited mood), and other abnormal moods” for people with disorders similar to mine. It can cause affects like the ones that I usually have on a daily basis such as:
  • loss of balance or coordination
  • double/blurred vision
  • difficulty thinking or concentrating
  • difficulty speaking
  • drowsiness
  • dizziness
  • loss of appetite
  • weight loss
  • stomach, back, or joint pain
  • uncontrollable shaking of a part of the body
  • chest pain
  • swelling of the hands, feet, ankles, or lower legs
  • headache
  • sensitivity to light
  • loss of consciousness
So I'm waiting until the weekend to try it. Speaking of the weekend, I have 2 churches that I'm going to this Sunday, so I'll have to be up at around 5 in the morning to be on time! 

Anyway, like Hannah I too have grown out of my cardiologist (I think we had the same one). I feel like I’m too complex and need a doctor that is better acquainted with what I have. So until my Dr. Grubb appointment I’m stuck with self medicating (although there’s nothing I can really do), which should only be a few more months.

Something just spurred my thoughts to school... My grades for Algebra for the second and third quarter of the year have been placed on "incomplete" because I've missed so much. I am so thankful that my teacher lets me stay after for tutoring, although it is incredibly tiring to use that much of my brain. 

Okay, moving onto the questions!!!

Do you all feel like you are getting worse? I do, and I feel like my tolerance that I used to have for regular activities has gone down drastically. 

Can you guys vomit silently? I hate vomiting (I'd rather swallow it back then let it come up) but when I do it's not silent.

Do you sometimes feel better after a faint? No, I always feel worse.  

Do any of you have narrow pulse pressures and does your diastolic ever get really high? I have been recently, my diastolic has been really low.

What is your favorite color? Although it's not a color, black, but if I had to pick a second it'd be green.

Until next week, Miranda

Wednesday, March 21, 2012

Um...my self esteem went down to a 0.

One of my doctor diagnosed me with a form of arthritis. We don't necessarily believe him though because my blood work does not match up. My pediatrician told us to do the tests and if they still are not indicative of arthritis, then do not to follow through with the treatment. 

He also told me that I needed to swim, so my mom and I joined the YMCA. Today I went to use the pool that they have there for me to use and I swam 2 laps. I got so exhausted that I pretty much puked for as much as I can. I cannot actually throw up because of the surgery that I had. I could feel it, but it did not come all of the way up. I managed to hurt my hip because I guess I was not doing the correct type of motions for my joints. Now I have a lot of pressure in my hip area. 

Today I went to get my blood work and had 12 tubes of blood taken. O: 

Now to the questions...

My Question: Do you all feel like you are getting worse?
I feel like I am much better and much worse in different areas. My joints have definitely gotten worse. My POTS has been much better than it used to be. I have not blacked out in days. My pulse is only 102 standing! 

Michelle: Do y'all know any boys like us?
Hahahaha, I sent ya an IM for that question. :) 

Erin: Do you suffer from abdominal pain?
Yes, I do. I recently went gluten free and that pretty much took care of most of those problem. I would suggest you try it. 

Rhianne: What is your favorite "i'll get through this" song?
Mine is Still Breathing by Mayday Parade. Mayday Parade is an awesome band, so if you want to check them out go here. :)
Also....Do you sometimes feel better after you faint?
I have not fainted very much, but the last time I did I felt much better. 

Logan: Your post almost made me cry! It was such an eye opener. I would answer your question, but I cannot throw up so I cannot really answer it. 

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


Tuesday, March 20, 2012

Launch operation lab rat...again

So guys, as this title suggests I am about to launch into more tests. I know I am getting a make shift tilt table test tomorrow at my doctors.

The reason:

FAINTING

At school....

In public...

Scaring people...

And usually injuring myself

My parents, my friends and my teachers are all worried I am going to "die" somewhere. Ie, collapse down some stairs and spilt my head open. I have fainted at school twice this week, Wednesday and yesterday (which was Monday in Australia). The joys of being a teenpotsy.

I think I have a bruise on my bottom from where I fainted yesterday. Argh! Rah! Blah!

Wednesday when I fainted everyone was really nice. Two guys offered to carry me and my friends sat on the ground with me so I didn't look so awkward. The deputy came and asked how I was and my drama teacher came and saw how I was.

Yesterday, I was walking to class alone. I fainted and I got yelled at when I went to stand back up. I got told I needed to see the first aid person and stuff. I was like, ergh! This is normal. The teacher yelled at me and said fainting wasn't normal and blah blah blah. I just told her I am going to Maths, have a good day, and went to class.

So tomorrow I have a doctors appointment, cheers to being a lab rat.

So my question for this week is: do you sometimes feel better after a faint?

Yesterday when I fainted I felt sick but then afterwards I felt so much better.

Anyway, that is my potsy week for you. I hope yours was better then mine. The definate highlight (well besides giving three minutes of my english speech before getting dizzy) was skyping with Logan and my brother comming in and asking about the pots in her brain.

Now onto the questions.

Now sorry I need to finish this post up and do my homework so I am just answering the questions.

Do y'all know any boys like us? Yeah I met a boy with bad CFS and headaches when I was in the hospital. I also know a boy with POTS.

What is your favoUrite coloUr? Yes in Australia both words have a u in them and I felt the urge to correct that. I like blue and green to be honest.

Do any of you have narrow pulse pressures (the difference between your top number and bottom number... it should always be around 35-40) and does your diastolic (bottom number) ever get really high? I have no idea. I sometimes have high BP though.

Bye for now
-Rhianne

Sunday, March 18, 2012

...and it was a good weekend!

Hey friends - what a weekend filled with family and friends :) 
I'm always thankful for good times like that. 
On Thursday, I had my recurring appointment with my autonomic neurologist. It was SO short. 10 minutes I was in and then out. He ask how I'm feeling... I said actually pretty good. Still crappy days, but I can manage them. I received permission to increase or decrease my dosages as needed! Weird? Kinda. My main symptom is fatigue! All the others, yes, but the fatigue is overwhelming. My concern with my vitals in my blood pressure. He said to continue and monitor it and we will talk next time if it is still high. My diastolic(bottom) pressure number is always 98-120 and my top is usually normal-ish range. My average reading when standing are 129/106 and a heart rate of approximately 118. Let me tell you that having a high BP reading feels just as awful as when I had hypotension (low, low readings).

I have an allergist appointment in two weeks! Very excited. Like I mentioned before, I have seen three different allergy.immunology doctors, and they all had different diagnoses. I'm complicated with my health in ALL aspects, not just POTS. But truthfully, aren't we all? It's not that I want her (the new allergist) to find anything wrong, but I would love to find a trigger that I can avoid which can in return improve my over all health!

We will see! :)


Here are the questions for this week. 

Do y'all know any boys like us? I don't! I know "of people" from the online POTS world, but personally, I don't :/

What's your favorite "I'll get through this" song? "Keep it Together (Acoustic)" by The CO and Tyler Ward

Has anyone ever considered getting a service dog? You know, I really haven't. With my lifestyle, it just wouldn't work. Plus I don't pass out...


What is your favorite color? Oh man I don't have ONE favorite. I really like pastels, a deep purple-ish/pink and black+white.
 
My Question: Do any of you have narrow pulse pressures (the difference between your top number and bottom number... it should always be around 35-40) and does your diastolic (bottom number) ever get really high?

Thoughts going out to you all for a wonderful week!
xoxo
Erin

Saturday, March 17, 2012

Fudge cookies. I'm on my iTouch and it decided to go weird so I can't ask my question-What's your favorite color?

Hey, lovelies! It's been kinda crazy. I had a something reaction episode thing Sunday, and ever since have had varying degrees of trouble swallowing since. I saw an allergist today-HE HAS POTS PATIENTS, I literally fell off the table in shock-and I was tested with over 70 foods, none of which I was allergic to. It DID trigger an episode, though, and I almost passes out trying to find a nurse because they don't have those little string things you pull in emergencies. He's gonna test for Celiac's, but he (and I believe it was Cheyanne who mentioned it) said it could also be a symptom; my parents refuse to listen though, they scoff. =P I haven't needed any classmates to catch me lately, though, so that's good.

Erin-I'm glad you've been pretty good. Ouch! I hope it's healed by now! =| How did your appointment go? I ALWAYS forget-well, forget to actually take it! :P

Rhianne-YES. Definitely! You take gym? 0.o I tried but 3/4 of the time I ended on the sidelines or on the ground! Haha. Oh, wow. "Happy" anniversary! I hope your hand's better. ): My song would probably be 'Stories(Down to the Bottom' by TobyMac.

Michelle R-Hey! I'm glad you got to go bowling! I read that! Like it? Dislike it? Really? Aww! <3 Ouch! I'm sorry. :( *hugs* GOOD LUCK WITH YOUR CARDIOLOGIST!

Miranda-Yayyy! I bet! Ouch. Lots of layers! My blood turns to sludge when it's cold, ugh.

Hannah-I'm so sorry you've been having such a rough time!*hugs* I'm glad you got to go to the party! It sounds like fun. =) Yes, there is! =D Good luck with your new doctor. I'll be praying for you.

My question is a very important, life-threatening question:
What...

Is...

Your
Favorite

Friday, March 16, 2012

Hey ladies! Warning: This is going to be an unorganized post! It's Hannah here and I'm not even sure if it's by week to post, but thank you Rhianne, for reminding me :)

I am not doing well at the moment so I didn't read through the posts...Sorry ladies, but I am going to do my best on the questions below that I found.

Right now I am still kind of in a cycle, able to do things for a few days, then crash. And I feel like I am having like IBS or something... So, I've been having some new symptoms and some old ones coming back in other areas, such as certain types of headaches, etc. But thankfully the returning headaches don't seem as bad as before.

I have just been a busy bee... I've been studying scriptures, doing lessons from the online school I'm in and then spending my other time if I'm feeling well sitting outside or cleaning, or going to some stores, etc. and if I'm not feeling well, I've been spending it playing video games, being on my ipad or watching movies.

I do have good news though, I was able to go to one of my friends's birthday parties! I had two friends with parties two days in a row, I missed one from being too sick and made it to the second one (though I wasn't sure how long I'd last) and I was able to be there for around two hours. It was amazing to me... I basically sat on the floor the whole time with another friend watching them play wii, but it was so nice and I was excited I could be there for that friend and her celebration, even though I am disappointed I missed my other friend's celebration, but I get to see her this weekend, so it's all good! :). So ladies, especially for those of us who are really sick... There is hope! This time last year I was a couple weeks out of the hospital...So, there is progress to be made!

I have also "out-grown" my cardiologist, however, I am seeing a neurologist and a sleep neurologist? I am not sure what she is called- but basically the sleep specialist (there we go), who I see at a diferent pediatric institute than my cardiologist are referring me to another pediatric cardiologist, which is very stressful for me- because though I feel I am beyond the expertise of the cardiologist (who was unique in his kindness and compassion) I've been seeing- I am nervous to be starting a new journey of a doctor with new ways of treatment, etc. But I'll be trusting God to take care of me like He continually has.

Questions...
(I hope I got these right!)
Michelle R: Do y'all know any boys like us? Not that I can think of, however, a while back, my mom had a phone conversation with someone we knew from somewhere from a while back before that (I hope this is making sense) and her son I think it was, had POTS or some form of Dysautonomia, but I'm pretty sure it was POTS.

Rhianne: What's your favourite "I'll get through this" song? Wow, I don't know if I can pick just one...There have been many but I think my most current one is probably I'll Watch You Dance by Holly Starr.

Emily: (I didn't get to read your post but I'm excited to see you posted on here!) Has anyone ever considered getting a service dog? Yes! There was actually a time when I thought I was getting one, but it fell through. I have since looked into it, but am waiting until I am in a bigger space because I have two small dogs. One an old man and one about to be a year old, and our older dog (who isn't mine) likes to camp with me a lot so I'm not sure I'd have any room left (I am sure I sound like an animal hoarder, lol! I'd love to see if it's possible to get instead of a service dog... a service pig! Yes, you read that right!).

Cheyanne: How many of you have joint pain on a daily basis? And are you double jointed? When I am off an SSRI- I get a lot of body pain. Some joint pain, but to say I get specifically joint pain on a daily basis I don't think would be accurate. Still, I get stiff, and I get weird pain and pain is weird places like my sternum, but joint pain is more "occasional." I am not double jointed/ hypermobile, but I have possible Fibro.

Logan: (I hope I have the right person who asked this question!) Do you have any bad habits? I again didn't read through posts to see the context for all the questions, so I'm not sure if this is in regards to health or in general, but yes! I suppose a bad habit of mine is not sleeping in the same place all the time. I go some nights sleeping in my recliner, and some nights sleeping in my bed- which isn't good to train your body to associate a certain place with sleep, but I spent (as most of us have) so much time in my bed for a couple of years, it just doesn't seem as comfy of a place anymore.

I hope all of you ladies, and readers, have a great weekend and week ahead!

Until Next Time...
~Hannah

Thursday, March 15, 2012

First Night In The New House!!

Hey guys! I did survive my SATs, although my brain was completely fried after it. I’ve been spending the last few days packing/moving my stuff over to the new house. And with packing comes pain, from being crouched down and stuff falling on me. I’ve also managed to bruise myself many times with boxes. The new house is absolutely freezing! It’s 112 years old and apparently old houses hold the cold.

I never knew I had so much stuff. As I was packing I found things from when I was like 3 years old and a lot of my medical records. Which brings us to the questions….

If your ten year old self met you now, would they be proud? I think I would be proud of myself. Around that time was when I started to get symptoms and I was also in a really bad place with my OCD/depression, I don't think that I could have ever imagined that I would get this bad, but it happened and I wouldn't change it.

Do you know any boys with similar issues? Nope.

What is your favorite “I’ll get through this” song? Probably Under Pressure or I Want To Break Free by Queen.

Have you considered getting a service dog? My dog now tends to act weird and won't leave me alone when my blood sugar is too low or if I'm going to have one of my "unresponsive" episodes, but it would be nice to have one that is trained.

Do you have joint pain on a daily basis? And are you double jointed? Yes and yes.

Do you have any bad habits? I do, but I have a lot of them (thanks OCD!!) so my worst one could probably be procrastination and losing my tempter.

How do you deal with a relative who just doesn't understand what it's like to have a chronic illness? I really don't have any advice for this, because if I've already explained it and they choose to not listen, I'll just ignore them.
Until next week, Miranda

Wednesday, March 14, 2012

Lonely Spring Break for me.

Hey y'all it's Michelle R subbing for Cheyanne today.
Well things are....different lately. I went bowling yesterday with my bestfriend, who I haven't seen in what feels like ages, so that was a blast. But my heart was racing the entire time and I'm pretty sore from lifting a 6lb ball for 6 games. OUCH!
Anyways, I'm pretty excited that I get to spend one of my days off from school at my new Cardiologist. WOO. -___-
But at least I have a book to read courtesy of my wonderful teacher >.< The Crucible makes my head hurt.
Oh and guess what there's a man in my life now. Well sorta. He walks me to class and says everything that us sick girls would like to hear, like "I'll take care of you." Blah blah blahhh. Hopefully he's not a liar. <3

I have no clue what is going to happen since my tachycardia hasn't ceased in like 2 weeks. I can just feel my heart beating through my chest all the time, it drives me bonkers. Luckily it's just at 112-121. I'm not sure if my BP has gone down at all since my parents refuse to buy a bp monitor. But I'm not sure what this new guy is going to do. I mean I had all the heart tests done except for a stress test, but everything always comes back normal. Perhaps he'll put me on a beta blocker or something like that. I just hope he's not a complete douche lord who makes me want to strangle him. He's not even a pediatrician, which is what I'm used to. ARGH it's just really stressful.
Let's do questions shall we:
Miranda: I have taken vitamins in the past such as, Vitamin D, melatonin, and ginseng. Did I feel a difference? Not really the melotonin did something for my sleep but I would still wake up in the night.
Emily:  As far as relatives go, I'm not sure they understand at all about what I go through and I usually don't bring it up. I don't even bring it up to my parents because they're just severely in denial of how severe my illness can get. So I'm pretty much in this with 50% of them.
Rhianne: That's a tough one. I believe my 10 year self would definitely not believe this is what our life has come to, but I think she would be proud that I'm in school still and doing well.
Logan: I have had this habit since I can remember. I bite my nails and I bite my skin all the time. It started with my nails, but since I rarely have anymore nail to chew I start at my skin and I bleed often. People tell me to stop, but it's impossible.
Cheyanne: I am not doubled jointed, but I do have joint pain every single day, and every place.
I'm not sure who posted on Monday but "My get through this" song would have to be "My Body" by Young the Giant. It completely just pumps me up and convinces me to never quit even if my body says otherwise.


My question: Do y'all know any boys like us? In all seriousness I would love to meet a guy who has the same issues as us or close to the same. Plus I'm a lonely gal :( haha

Well I hope you ladies have  a wonderful symptom free rest of the week. And I wish you luck on any up coming tests or doctor visits.
Love,
Michelle <3

Monday, March 12, 2012

Another week of being a busy potsy

Hey guys, do you find that being POTS ruins the idea of freetime for you? I swear I am either a) sick or b) busy as a bumble bee. I never stop unless my body MAKES me stop.

So this week, was another week of school, gym and homework. FUN! Kidding. I do like school and gym though but sometimes I wish I could just stop and take a break. Oh well. I have a Maths Test tomorrow on Financial and Data Analysis. A lot of you are saying POTS has made you worse at Maths, I find POTS made my English A LOT worse. Like this time last year, I couldn't read a page of a book.

Another thing, I got diagnosed a year ago like around this week (not sure of the actual date) I got officially diagnosed with POTS. That means I have known Hannah and Logan for a year when I "met" them on TDC shortly after I was diagnosed. So I just wanted to say thanks guys for sticking with me and putting up with me for that long!

I have musical practice tomorrow as well as the Maths Test so tomorrow shall be exhausting for me! I also fainted this after and came down on my hand so now that's sore.

Now onto the posts:
Logan: YES! It seems like you hadn't posted in forever. And I understand how hard it can be to have a shower. I always break it into three tasks: showering, shaving and hair washing. It helps for me. I HOPE YOU FEEL BETTER SOON! <3 <3 Feel free to email me anytime. :)

Do you have any bad habbits? My Mum said verbal diarhoea. I am very open minded, I tell my friends exactly what I think and don't sugar coat things. I also bite my nails.

Cheyenne: Hope that doctor provides answers for your issues?
How many of you have joint pain on a daily basis? (knees, elbows, shoulders, fingers, toes, wrists, ankles, etc.) And are you double jointed? I don't get joint pain on a daily basis and I am DEFINATELY not double jointed.

Emily: Has anyone ever considered getting a service dog?
They only give them to blind people in Australia I am pretty sure. BUT...my labrador always helps me when I faint and pats me til I wake up and barks at me.

Erin: GLAD TO SEE YOU BACK!
My question: What is your favourite "I'll get through this" song?

I love I'm still standing by Elton John, Maybe tonight, Maybe Tomorrow by Wide Awake, Brighter Days by Leeland, Skyscraper by Demi Lovato and Nightminds by Missy Higgins.

Sunday, March 11, 2012

Recap! I'm Back!!

Hi friends.
Excuse the absence. I feel there is no real excuse, as everyone is "busy" but what a year it has been. Interviewing for my future has been my top priority :) Now the waiting game still continues.

Health wise, I've been pretty good. Joints and what not are always a problem plus GI issues. That is nothing new and a "normal" for me! Non-POTS related...I sliced my hand yesterday while putting the dishes in the dishwasher. AH it's very deep, too! No fun. It's on my right hand AND right by my knuckle. Not the best place : / I was debating getting stitches or not, but I'm sick of doctors and will not go unless it's absolutely necessary.

This Thursday is my 3-4month appointment with my autonomic neurologist. I have been so bad at remembering to log all my BP's and HR's! Does anyone else tend to forget a lot? When I have remembered, my pressure standing has been so high... around 139/109 ..boo! Maybe I need to ween down on my mestinon? We'll see!

SO MUCH I have missed. I really do apologize. Welcome Christine and Emily! It's awesome to have you here :) Hannah - congrats on starting bible school, you will be wonderful in all your future religious endeavors! Cheyanne - I am SO sorry that you did not have a good experience with your geneticist. What an uneducated doctor to be helping you...of course EDS patients have pain! Wow.  I hope things are better, dear! Rhianne - I hope school is going well!!! Logan - raw diet = success! Also, I think you said you are registering or working on your education, I think! Congrats girl and keep pushing on! Miranda - I believe you just recently moved! I hope it wasn't too stressful and everything is good with school and what no! Take care, girl! :) Michelle K - Hope school, work, and your busy schedule is working okay for you! I love your determination!

Now for the LOADS of questions that I have missed...

How many of you have joint pain on a daily basis? I do! My arms always hurt. They constantly hyper-extend and there's nothing I can do. Just naturally fall that way and look really funny (they gross people out!) My hips tend to hurt a lot and my wrists, left shoulder, and ankles are also my primary complaints.  

Are you double jointed? VERY! 9/9 on the Beighton Scale, plus a lot of weird other things...it really runs in my family!

What settles your heart rate best? Laying down, rest, deep breathing, atenolol...

Do you take vitamins, if you do what do you take? Currently, I take probiotics, vitamin C, and am still on b12 shots.  
How do you deal with a relative who does not understand what it is like to have a chronic illness?
I have given up on a couple and honestly, when I have "good days" it's like they can't believe that I can be okay one day or even hour and crappy the next. They look at is as "well, it could be worse..." or "at least you don't have cancer". I just get annoyed and don't really talk about my illness with them. My biggest pet peeve, however, is when they don't ever ask questions or bother to ask how I am. Frustrating!

How do you manage to go to school all day? I can barely manage being at school for 2 hours.
When I took college classes, I got decent breaks. It was nice! Teaching, it can be very difficult at times and when I get home, I pass out! Honestly though, I have learned what things in my life are important and to not give others my energy. I try to rest and preserve as much as I can! There really is no answer, and at times I have to call in...

If your ten year old self met you now, would they be proud?
I think I would be in awe about all I have accomplished and overcame. When I was ten, I was very sick with my GI problems as well, so as far as illnesses, I was always a sick kiddo. Nothings new, just my determination!

Do you have any bad habits?
Who doesn't?! Ha-ha - Too many to even think about right now, though!

Any suggestions for confronting friends who do annoying things that bother your dysautonomia?
I will just take myself out of the situation usually. I have found that when other people have to modify THEIR life to accommodate yours, they get tired of it. It is much easier to just remove yourself from the stimuli or problem. If it is a small group (one or two people) I will just flat out tell them what is going on and ask if they could simply stop or dismiss the behavior/action. Mostly, I just avoid my triggers...bright lights, crowds, loud packed rooms, late nights, etc...

What is your preferred exercise? This is my problem. I NEED to exercise more. Right now I walk, but unfortunately do not do that much. I want to really work on core strength training like Pilates again.

Brain fog. How bad is it for you, and what exactly do you label brain fog?
Sadly, this is one of my worst symptoms. I think the biggest difficulty is forgetfulness and recalling words. I can be thinking of a specific topic, but to find the specific word... that can be so difficult. I can picture the word in my head, but for the life of me cannot figure out the name. It's actually very embarrassing, too. I alway say "I just have an awful memory" or"Brain Fart!"  

Holistic Medicine Thoughts?
I used to use it. I think it's good, but a little bit of everything is always the key, I think. It's just too darn expensive.


What subjects are compulsory for you? 
I am done with college, but waiting to get into graduate school this summer. Right now I am student teaching :) 

Any advice for trying to form a good sleeping habit, without 'killing' yourself in the process?
No TV in the bedroom. Go to bed the SAME time every night and regardless of the day, get up at the same exact time for 2 weeks. 

 Do you all have any of the sweating issues and if so what kind of deodorant do you use?  
Sometimes, depending on the day, I can sweat a lot. I love BAN deodorant. 

Do you have a normal sleeping schedule?
For the most part, I do now!

How do you cope with bad memory? What tricks do you do to help yourself memorize things? 
I have an awful memory. I cannot remember so many things, it's really sad. If anyone knows are suggestions for this I would gladly take them!

 Do you have a scale you rate your days on?
I get so incredibly tired of doctors saying "One a scale of 1-10, where would you rank your pain" ... I mean really! Ugh. 

 What is your favorite "I'm sick but need out of the house" activity?
I love organizing. Anything and everything :) 

  Do you find yourself tempted to take on way too much even though you know realistically you shouldn’t be doing so much? 
Of most definitely. Guilty party of one, right here!

 What is the highest your heart rate has ever gotten that you have been aware of?
My highest, I believe is 189

 Do your legs feel itchy when you have blood pooling?
YES! I hate it! I have peripheral neuropathy, but they get so itchy!!!!!!

Do you suffer from abdominal pain and if so, is it something that's been investigated, or is it just a POTS thing?  
I have had lymphacytic colitis for a long time now, but + all the ther POTSy symptoms added to it! Blah. GI symptoms make it hard to live typical life.  

Saturday, March 10, 2012

WOAH. Looong week

Do you ever get so brain foggy you just can't remember? That's me. I can't remember Monday, Tuesday-oh wait. Tuesday, I remember because I got up to go get a drink of water, and randomly collapsed. A cute guy caught me! Lol. It was amusing. I remember my vice-principal/former teacher raced in on heels and the first thing she said was, "It's a good sign that you're talking normally to me." My class is so well-trained by now. It was like instant action, and they knew what to do. *relieved grin* Wednesday and Thursday I don't remember, but all day yesterday, I felt like I was on a tilt-a-whirl. It was so nauseating. I'm better today, just exhausted. =)
My question: Has anyone ever considered getting a service dog?

Break a leg, Rhianne! =) I'm lucky-I only have to take 3 classes, so the hw isn't too unreasonable. Thanks. =) -I've gotten blonde jokes a lot, haha. That's how I am...I agree. Thanks!
Hmm...I think my 10-yr-old self was much...muchier. I just used to say what I thought & damn the consequences. I think she'd be proud of how I handle everything, but she'd be disappointed in how easily cowed I am by my mom.

I'm sorry you didn't have a good week, Logan! Ugh, I feel ya there. Does te raw food diet help? I keep track of some foods to avoid, but nothing major. *hugs* I'm sorry you're going through that. Could a bath help? Instead of the pin-pricks of water slashing at your skin. =P
-Thanks! Oddly enough, I've only had one or two doctors who were disbelieving. I'm glad you have parents who are pretty understanding. I've been trying. =)Thanks.
Bad habits...I have two that really bug me. I always chew on my lips, so they're always chapped. I've been chewing peppermint gum lately. My other "habit" is when I can't think because of pain or brain fog, I don't realize I'm doing it until after, but I try to distract myself with new pain. So I pull hard on my hair or try to dig my nails into random spots. I have crescent scars lining my hairline from 3 weeks ago.
Heya Cheyanne! I follow your Tumblr! (Also I think one of the Michelles-Sinnsinnshelly, anyone?) Good luck!! I'm sorry your joints have been hurting. *gentle hugs* They're missing out on a wonderful gal! Ooo, I hated Geometry too. Good luck with your exercises! Thanks! I'll friend you! Okay. I agree. True, lol.
Umm, my fingers, shoulders, & does the neck count? I'm not double-jointed but my brother is.

Wednesday, March 7, 2012

Going to see Dr. Tinkle in Cincinnati!

I will be going in June. I am also going to see a rheumatologist at Shands. Not sure what exactly she is going to do for me, but I guess we will see.

My heart rate has not been too bad recently, although, my blood pressure has been kind of low at times because I have been blacking out more. It is kind of weird that my pulse is staying between 90-115 while standing though. All of my joints have been pretty bad. Every time I move something is popping or cracking.

I'm still hating school. Everyone is still ignoring me and I hate the class I am taking. Geometry...yuck! I got my report card today and I have a 97 in the class. I just really don't like math. We thought I was behind in credits since I am not taking as many classes as everyone else, but I'm not, which is great!

I've still been doing the stationary bike. My mom and I have been trying to exercise. I don't know what arm exercises to do because my joints are so unstable. I always move them out of the normal range because I am double jointed. Then, I end up hurting myself. Ugh.

My Question: How many of you have joint pain on a daily basis? (knees, elbows, shoulders, fingers, toes, wrists, ankles, etc.) And are you double jointed?
I am double jointed and I have joint pain in all of the joints on a daily basis.

Michelle:
Thanks for subbing for me. :)
What settles your heart rate best?
Um...probably lying down. I am not on any meds for that, so all I can really do is lay down.

Miranda:
Good luck on your SATs!
Do you take vitamins, if you do what do you take?
I take vitafusion/MultiVites. They are gummies. :) I also take many supplements.

Emily:
Welcome to the blog! :) If you ever want to talk, then here is my Facebook.
How do you deal with a relative who does not understand what it is like to have a chronic illness?
I don't think anyone can truly understand unless they have been through it themselves. I just try to explain it to them and if they don't even try to understand then it is their loss.

Rhianne:
How do you manage to go to school all day? I can barely manage being at school for 2 hours.
If your ten year old self met you now, would they be proud?
I think so. I agree with Logan, I think my ten year old self would be scared.

Logan:
I am with you! I am so much like an old lady. I mainly sit here online, knit, sew, and listen to music. I wish we lived closer and we could knit together. Haha! :)
Do you have any bad habits?
I have a lot of bad habits. I actually have a milder version of your bad habit! I have done that since second grade. I don't ever pull my hair out, but I used to make myself bleed. To this day I still do it. I go through stages where I won't do it and then I will start again. I don't make myself bleed anymore though. I also pick at my nails super bad.

Christine:
Welcome! Like I said to Emily, if you ever want to talk here is my Facebook.
Any suggestions for confronting friends who do annoying things that bother your dysautonomia?
What are friends? Hahahaha. I barely have any friends. Most of the time I try to ignore it. At family gatherings everyone is loud and it sets off some of my dysautonomia symptoms. I'll get headaches to the point where I can barely see straight, but I try to stay in the room and ignore it.

I hope everyone has a great week!
God bless.
Cheyanne

Tuesday, March 6, 2012

Me Verses The Shower

Hey guys, feels like forever since I talked to you!

The last week was not my best week. Long story short, I got my dreaded monthly gift on Tuesday, and with it came some nasty symptoms. I'm feeling better now though thankfully.
The most unpleasant thing is that I'm terrified of taking showers now. My sensitivity to touch has gotten really bad, and I get so sick from even just the feeling of the water pouring on my skin. Also I seem to be really sensitive to temperature lately too, so that doesn't help anything either.
On top of all this, I'm really struggling with my metabolism. It went up really high thanks to my healthy diet, and I've been needing about 4000 calories a day! But right now all I can handle is maybe 3200-3500. Believe me my body notices the difference, and I'm not feeling quite as good. 

Rhianne- I know how you feel, I get kinda sad when I think about how I spend my day, cooped up in the house, mostly doing hw and crocheting/knitting all the time like an old lady.

Your Question- if your ten year  old self met you now, would they be proud?

I don't know, I have certainly grown up a bit, but I'm still just as big a sinner as I was when I was 10. I am still completely dependent on Jesus, and I will be for the rest of my life, but there's nothing wrong with that. I think my 10 year old self would mostly be afraid if they met me, she would see that in several years she was going to be sick, locked in the house all the time, isolated, unable to even go to school or go to church. She wouldn't be able to handle it, to be honest I can't handle it sometimes. Its hard.

Emily- How do you deal with a relative who just doesn't understand what it's like to have a chronic illness I'm so sorry you have to deal with this! Mostly I just try to remember that other people don't "NEED" to understand. God understands, He sees everything I go through and He understands it perfectly, and I remind myself that that's all I need. 
Sometimes I do try explaining things in different ways or using analogies if they don't seem to get it when I explain it the first time. If even that doesn't work then I just leave them alone or pray about it. Other people's ignorance isn't my fault, and sometimes there's nothing I can do about it. 

Miranda – so sorry your joints are bugging you. Aside from diet, I also noticed that this joint supplement really helped - http://www.consumerhealthanswers.com/elations-reviewed.htm

Do you take vitamins? Not at the moment, I'm getting plenty of everything from my diet. But I usually take supplements.  
Michelle R- What settles your heart rate best? - I am on some medications (Flornief and Propranolol), those help alot. Also physical therapy has helped alot, and a healthy diet too. It really helps so many of my symptoms.

Christine – Any suggestions for confronting friends who are doing annoying things that bother your Dysautonomia? - Just tell them whats wrong, and do it with love and patience. If they don't get it, or they get mad at you, its not your fault. Its on them not you!
P.S. Sorry I didn't get to see you today. I had a doctors appt! You will have to show me that bracelet next week!

My question.. Do you have any really bad habits? I have an awful one, I've had it for years, I pick or scratch at my scalp, sometimes still it bleeds. I don't know why I do it, my scalp doesn't itch or anything. I just do! Wearing a bandana or putting my hair up in some way really helps me to keep my hands out of it, otherwise I haven't found anything that helps. 
 
- Logan

I am...the exceutor

Now guys before you get freaked out, it is for my school play of Henry. Haha. I get to walk through the crowd with an a fake axe hehe.

Anyway, I missed last week, from memory I was swamped in homework. How much homework do you guys get? I swear my life at the moment is just school, exercise, homework, bed. It isn't very fun. I had to do an assignment on time management and I actually found it depressing to see how I spend my day and how much of a day is spent:


A good day

Time of day
Activity
Time Taken
Type of activity
6:30am
Get out of bed
30mins
Physical
7:00am
Get ready for school
45mins
Physical
7:45am
Drive to school
30mins
Committed
8:15am
Play handball
45mins
Free
9:00am
School
1 hr and 50mins 
Committed
10:50am
Recess: 

10min physical, 10min free
Eating 10mins
Free 10mins
11:10am
School
1hr 40min
Committed
12:50pm
Lunch:
40min
10min physical, 10 minute free
Eating 10min
Social 30min
1:30pm 
School:
1hr 40min
Committed
3:10pm
Walk downtown
20min
Free
3:30pm
Gym
1hr
Physical
4:30pm
Drive Home
15min
Committed
4:45pm
Afternoon tea
10min
Physical
4:55pm
Check email, facebook
5min
Free
5:00pm
Study/homework
2hr
Committed
7:00pm
Dinner
30min
Physical
7:30pm
Watch TV
1hr
Free
8:30pm
Shower/get ready for bed
30min
Physical
9:00pm
Sleep
9hrs 30min
Physical

 An average day

Time of day
Activity
Time taken
Type of activity
6:30am
Get out of bed
30min
Physical
7:00am
Get ready for school
45min
Physical
7:45am
Drive to school
30min
Committed
8:15am
Social
45min
Free
9:00am
School
1hr 50min
Committed
10:50am
Recess
20min
10min physical, 10min social
Eat 10min
Social 10min
11:10am
School
1hr 40min
Committed
12:50pm
Lunch:
40min
10min physical, 10min free
Eat 10min
Social 30min
1:30pm
School
1hr 40min
Committed
3:10pm
Walk downtown, hang out with friends
50min
Free
4:00pm
Doctor’s appointment
1hr30min
Physical
5:30pm
Drive home
15min
Committed
5:45pm
Afternoon tea
10min
Physical
5:55pm
Rest
35min
Physical
6:30pm
Dinner
30min
Physical
7:00pm
Homework
1hr
Committed
8:00pm
Sleep
10hr 30min
Physical

 Note: I was too dizzy to have a shower in this period of time. I promise I had one before I went to school the next day.

A bad day

Time of day
Activity
Time taken
Type of activity
8:00am
Get out of bed
1hr
Physical
9:00am
Rest
1hr
Physical
10:00am
Eat Breakfast
30min
Physical
10:30am
Sit on floor
20min
Physical
10:50am
Get to the other side of the house
10min
Physical
11:30am
Shower/wash hair
30min
Physical
12:00pm
School work
2hrs
Committed
2:00pm
Rest
1hr
Physical
3:00pm
School work
1hr
Committed
4:00pm
Read English book
2hrs
Committed
6:00pm
Eat dinner
30min
Physical
6:30pm
Watch TV
30min
Free
7:00pm
Shower
30min
Physical
7:30pm
Bed
11hr
Physical


Note: even though the bad day wasn’t a school day (I was absence from school), it is still a typical school day as I have a low attendance rate.

BTW, if my teacher googles this for plagerism I PROMISE THIS WAS MY DAY!

Anyway, I thought you guys might find that interesting. It is for my community and family studies class.

What else have I been up to? Not much really. Haha. I can't wait until these next two weeks are over because these zillion assignments I have are going to be done. I have one for drama, one for english, one for communuity and family and a maths test next week.

I just scanned through you guys posts and get your questions. I will read them when I have time! Haha. But I did notice Erin hasn't posted so after this post I shall facebook you Erin to see if you are okay. And welcome Christine! (I gave Logan my name so you can add me on facebook if you want and she has my email) and of course Emily! Welcome as well!

The Questions:

What is your preferred exercise? My preferred exercise is running. I know it isnt the best for my pots but it helps me think. I also like Blogilates, search it on youtube. It is POTS friendly.

Brain fog. How bad is it for you, and what exactly do you label brain fog? I have horrible brainfog and memory loss. I label brainfog as being blonde (sorry to any blonde people). My memory issues are so bad I cant remember like six months of my life! Its pretty scary.

Any suggestions for confronting friends who are doing annoying things that bother your dyautonomia? I don't really know. I have really great friends and I usual don't even think about POTS when I am with them. I just be normal.

What settles your heart rate the best? No idea. I have constant tachycardia. HAHA! I wish I knew.

Do you take vitamins? If you do, what do you take? Sometimes a multivitammin and my salt tablets.

How do you deal with a relative who just doesn't understand what it's like to have a chronic illness?
Some family members have made comments to me that are pretty negative but I just shake them off.

My question: if your ten year  old self met you now, would they be proud?

I think my 10 year old self would be. They would probably wonder why I don't love the saddle club anymore and got over my dollhouse but I think they would be proud of how I act and how I deal with my life.

See you guys next week !
Rhianne