Wednesday, August 31, 2011

Long week.

I've been really fatigued since last week. So much so,  that we made it a point to go get my iron checked since I have been anemic in the past. It turns out my iron is actually fine. My ferritin (iron stores) is only a 3 which is really bad. It was a five about 6 months ago. I think I may have been really tired from my first week of school, even though I am just there for an hour and a half.

My autonomic specialist is moving to Wisconsin!!!!! They were in Ohio. They will be opening their practice back up in a year. I go back in October, but a few weeks after that they will be gone. I really don't know what I'm going to do about that. Now I just have to wait until October and hopefully we can add some meds to help me. :) Maybe they will have someone else in the mean time change the dosages and things like that over the phone.

My what I believe is fibromyalgia has been terrible because of the hurricane that didn't even hit my state. There is a tropical depression in the Gulf of Mexico and it will be raining here the rest of the week. I cannot wait until someone puts me on some medicine for the pain. Also a new symptoms has arose. I keep having this constant feeling like something is stuck in my throat. The weird thing is that it doesn't feel that way when I am eating. Everything goes down fine. It makes it feel like it is harder to breathe. I am also having throat pain like something is getting jabbed in there. Just today I have a sore throat like I am getting sick. I looked it up and I have all of the symptoms oesophageal dysphagia. :( When I was researching it I found there was another type called oropharyngeal dysphagia where you cannot swallow and choke. I am glad no swallowing issues have started. Hopefully I won't get any and I will just have the feeling of something stuck in my throat.  

School has been going great other than it has worn me out, but I think it is good for me. :) 

Hannah's Question:  How much water a day do you try to drink? Or, if you really cannot drink a whole lot, what would be or is your goal?
Everyone tells me to drink a lot of water, but I am terrible at doing so. hahah! I really do not know how much a day I drink or what an accurate goal should be.

My Question: What is your favorite food to eat when you are feeling sick, but know you have to eat something?
Mine is hashbrowns from McDonalds. 

God Bless!
- Cheyanne :)
I hope everyone has a good rest of the week. 

Tuesday, August 30, 2011

Pics : )

Ok, I thought I would start with pics of my pets.

These are my beloved goldfish!

And This is my cat Elliebaby, although she is more of a family pet. 

Miranda you are right about the feeding tube.   I guess i heard my doctor wrong (he has a funny accent).  It is NG not NJ.  I might end up trying an NJ soon though. I will have to go back and edit.
I have done some experimenting with my tube this week.  I can't handle the rate the doctor set for me.  I tried not diluting things, or sipping on things by mouth in addition to the tube, but that didn't help any. I threw up my tube several times also, and I had to replace it myself which was a little scary.

Questions: Do you have an underlying condition that caused your Dysautonomia?  Not to my knowledge.

How much water do you drink.  Less than a liter.  If I could I would aim for at least 3, I think that's how much I'm supposed to drink because of my POTS.

No questions from me.  Have a good week guys. Jesus loves you!!!

Monday, August 29, 2011

Hurricanes and tornados and earthquakes oh my !

The titles totally lame but that's all this week has reminded me of lol this is a short post but I felt like I should post something haha I'm posting from
My moms phone because we have not had power for more then 24 hours and wer all going insane ! I felt an earthquake which was pretty awesome and then I freaked out from the hurricane and it all made me very sick hahah then there was a tornado next to my town and we had a warning for that as well. Hope everyone is okay ! And for everyone who dealt with it you're all safe. An loegi that's amazing about the feeding tube so happy for you !

Friday, August 26, 2011

If That's Not Forgetful... I Don't Know What is!

Hey lovelies! So, wanna know why I haven't been posting other than when Cheyanne subbed for me (thanks SO much girlie)? Pure forgetfulness! I even wrote down the questions last week and still forgot. I am so not with it haha. An update on me is that, I am signed up for one online class (Nutrition!), and that starts on Monday. I have still been very fatigued and been having random pain and have been more POTSy this past week than usual.  BUT, a new person at my primary's office I saw for the first time a week or so ago...Studied with the ASTRONAUTS! So he is familiar with Dysautonomia! Can you say...AMAZING? He told me that when I go into presycope, to take slow deep breaths (but don't Quit breathing!) that, that slows the autonomic nervous systems reaction down so you can sit and hopefully ward the episode off. I have tried it with other symptoms, not enough though to really say how it works.

You ladies who are just starting school, I hope it has started wonderfully.

My answers to the questions may be all over the place and I may have missed some.. I'm not even sure if I went far back enough to get them all but I thought it'd overwhelm everybody haha...

Rhianne: About what happened with Childrens' neurology...I am so sorry. They basically said the same thing to me when I was having violent  tremors. I am with a new neurologist at a different hospital and he is so much more willing to help! I mean, I don't want to bash Childrens' neurology, I am sure they are great at what they do... But when it comes to Dysautonomia, the one's I have seen...Just really don't get it lol. Again, I am sure they are great at what they do, and they seem caring...But Dysautonomia is not something the ones' I saw were familiar with.

Your dare was to write something positive in a paragraph about the person who posted before me (LOVE this dare!)..

Miranda, I have met you in person and I must say...You have a radiant smile! You are very intelligent, which I admire, and I still would love to get to know you more. You have a great sense of humor and awesome German language skills. Just in a nutshell, I think you're a pretty awesome and special girl and I am sorry that you are a fellow sufferer of POTS, but you are a great person to relate with! 

Miranda, you asked me if I found anything that might stop or trigger my tremors, and yes. A few things are weather, UTI's, dehydration and blood flow and more recently I think I'm finding that BP plays into it. Things I've noticed to help prevent it, is; not sitting on my legs (where I could cut off blood flow), staying hydrated, eating protein (I have not been checking my blood sugar but I kind of think that might play into it to), adequate sodium, and I think I'm going to start taking B-1 again to see what happens.

You also asked Are temperature regulation problems common for everyone else? Fairly common for me... I've noticed some days that my temperature is lower than usual!

Logei: I am sorry that you had to have the mannometry done, but what a genius thing it was to bring your vomit in! I am so ecstatic that you got your feeding tube (though I wish you didn't need one, but I am glad that they are trying to get your needs met!). Your question was, Do you have a pet? And yes I do :). Gizmo, Zippy, and I think our older Dog Bessy thinks she's mine too, haha.

Gizmo left, Zippy right

( I can't find a good enough picture of Bessers! lol)

Cheyanne: Your question was, How well do you tolerate meat? And do you get terrible constant stabbing pains through the abdominal area? Sometimes I tolerate meat pretty okay, and other times not so well. It is the same with raw vegetables. I do better with raw fruits. And I used to have  stomach pain/ heartburn/ and/or nausea pretty much all the time. More recently is horrible heartburn at times and awful esophagus pains/trouble swallowing randomly as well...or when a food or activity triggered it. The only things that have really helped me is diet change. I try to do less grease, more fiber foods, more fresh foods, more organic, and I quit eating gluten. Sometimes I think I'm fine to skip my acid reflux medicine (you know how we get so tired it's all we can do to bring ourselves to swallow that pill?), then I realize... I'm so NOT fine to do that.  Oh, and B-1 also helps my digestive track!

Erin: I do not believe you had a question, but what a sweet post... God's seeds definitely made me feel emotion!

Mel: Heeeeeeey girl! Welcome aboard! Awesome to have you on here (We already know each other but... I'm glad to get to know you more! haha) :). We will certainly miss Rhianne but glad to have you filling in for her! :). Your question was What do you guys do to "escape" from your sickness? I listen to music, play games, watch tv/movie, etc. Sometimes, as weird as this may sound- I let myself feel the overwhelming emotion of being ill. I crawl in bed, play some of my favorite songs, cry, go to sleep so I can wake up and feel better knowing that it's okay because God is taking care of me <3. Sometimes we just gotta let it out to move on, right? :). 

My question is: How much water a day do you try to drink? Or, if you really cannot drink a whole lot, what would be or is your goal? My goal is about 2 liters but sometimes that's not even enough, but my cardiologist says drinking too much is bad as well, I think because of washing your electrolytes out.

Sorry for the lengthy post! I hope you guys and our readers have an amazing weekend. Girls, you may need to remind me next week, haha. Keep hangin' in there all of you guys, readers and ALL ! :).

~ Hannah

P.S. Francesca, we must of posted at the same time haha. I hope you get to feeling better and quit getting so many dislocations :( Must hurt so bad :(, feel better :). And stay SAFE!

Early saturday Post

Hey gals, Its Francessca I know I'm a Saturday poster but here in Baltimore were expecting a hurricane
Saturday into Sunday , Allot has happened lately my EDS is acting up allot
and I dislocated my shoulder the other day  woke up and every thing was out of socket
hips, knees, and shoulder for any EDS patients that have allot of dislocations i recommend a tens unit
I used my moms and it works  along with some flexeril and tramadol
Ive been getting ready to go back to school we start the 29th ,I'm really ecstatic this is going to be my first time going in two years I was previously home bound on a program called tele class
you call in to the teachers its all done over the phone and theres several students on the other line which is pretty cool . This year I'm doing a program called advanced path Its  only Four hours using computers
with like 30 other kids.Sounds good to me :) Plus you save money on school supplies
I ended up not getting my tonsils out yet  because my back keeps locking up
sometimes  when I'm holding a glass my hand will just spaz out and throw it pretty embarrassing in a restaurant
does anyone else get like that ? I really feel like my brain malfunctions like  I was watching a movie and I laughed during the sad part some thing i never do .Very strange very strange
To anyone that uses a wheelchair If you go to the movies and they don't have automatic doors call and complain  My mom did and we ended up getting free tickets :)
                                                Time for questions

Melissa : How do you guys exscape your illness?

  I read  almost all the time I have a book in my hand ,Usually its by Lurlene McDaniel
or Ann Martin .Books are wonderful things its how I go on my "adventures "
I also write story's or I cosplay.

Cheyanne: Do you have and underlying condition that caused your illness?

Well pots is hereditary so i most likely got it from my mom .
It was brought on by puberty,But it got worse when I broke my ankle
The surgery made it flare up .

Logei: Do you have a pet ?

Yes I Have a Cat named Millie. She loves to be pet. let me rephrase that she thinks everyone needs to pet her lol.I think she thinks she thinks shes a dog
I never seen such a lovable cat .she also loves laying in a pile of stuffed animals
I have often mistaken her for one .See if you can find her below

Busy Busy!

So this was my first week of school as a junior and I'm surprised I've lasted this long. I've barely gotten a few hours of sleep each night, from various things each times, so that's making my symptoms flare even more than usual. I had to take one of my Focalin one day because I kept falling asleep in class and couldn't pay attention; my cardiologist doesn't want me to be taking it, even though it doesn't affect my heart. I'm only taking 3 classes, but every day I have the first class of the day, then I go back later, so I've been going home to take a nap in the gap between classes. I have yet to get my home school stuff in (it takes so long to ship!) , but when that gets here I'll have even more work to do!

My mom finally got my GI appointment and torture stress test scheduled. I go on September 7th for the stress test and September 20th for my gastroenterologist appointment. Both of them require us to drive at least an hour and a half, so I'm totally looking forward to that...not.

I'm going to be uploading a new video to my YouTube account tomorrow, so check it out!

I still have Algebra 2 homework to finish so I'm gonna cut this short and move onto the questions.

Melissa: What do you guys do to "escape" your sickness? I like to completely submerge myself in books (when I can concentrate, and that's usually only when I took my Focalin) and I love to be on my laptop for hours. I'm not much of an outdoorsy person, but I do love being on my dad's sailboat. There's this quote that I love and it's "Think of all the beauty still left around you and be happy." by Anne Frank; that always inspires me.

Cheyanne: Do you have an underlying condition that caused your dysautonomia? Not that I know of. I think I might have some type of hyper-mobility syndrome and some type of autoimmune disease (either Scleroderma or Lupus fit me right). But my doctors don't even care about finding an underlying cause, they just want to treat my symptoms that I have now. I'm really trying to get them to test me for that stuff.

Logei: Do you have a pet? Yes, I have a dog (he's a chihuahua and his name is Reece) and I have fish (they're a bunch of feeder guppies but I felt bad and bought them a few years ago). We used to have 2 guinea pigs (Guinea and Chocolate), but they died and we had a miniature pinscher (Prancer, he died too, here's a post about him on my blog). I don't have any pictures of our fish, but I'll put some pics on my blog this weekend. I am so happy for you getting the feeding tube! You are so lucky that your doctors listened! And I think that the one you're getting is NG (goes into stomach), not NJ (goes into jejunum, part of the small bowel). 

Reece, he lets us do anything to him!

One of Reece's puppies, they're Chorkies.
He's special.


And Guinea.

Bis zum nächstes Mal,

Wednesday, August 24, 2011

First Week of School!

Well, I have been going to school for one period and I feel so much better. Yes, I am exhausted and my symptoms have basically stayed the same, but I still for some reason feel better. It feels weird because I have not stepped foot on a school campus in a year and half. I haven't been able to get on schedule yet because the first week is always pure craziness and the bells ring at a different time then they usually would. Over all it is different, but has went very well. :)

I have started to get blood pooling in my legs and feet really bad lately. My mom is going to buy me some compression stockings. Hopefully they work.

This is going to be kind of a short post because for some reason I cannot think of anything to say.

Melissa's Question: What do you guys do to "escape from your sickness?
I never really feel like I can escape. No matter what I do I always have to take in to consideration what could happen if I do choose to do something. You know what I mean? Writing does kind of get my mind off of things though. Oh and welcome. :) I'd love to get to know you better.

Logei's Question: Do you have any pets?

I have a hedgehog named Stella and 2 cats named Angel and Peter I also have 2 dogs named Rusty and Gracie. :)

And your harp is beautiful. I do not have a musically talented bone in my body though. :) I am sorry to hear about the NJ tube. 8 months ago I almost had a feeding tube put in. I wasn't even throwing up because I can't. I was just so nauseous and wouldn't eat anything. I dropped 20 pounds. I cannot throw up because of the Nissen Fundoplication that I had a year ago. If it was not for that I would be throwing up everyday of my life.

My Question: How many of you have an underlying condition that caused your POTS?

God Bless.
- Cheyanne c:

Tuesday, August 23, 2011

Here's Hoping!

Hey guys. So I had my Ph probe test. As gross as this is, we saved all the vomit from my test. All five liters of it. My doctors don't seem to understand how much I'm throwing up everyday, none of them really take my GI problems seriously at all, so we decided to literally show my doctor how much I throw up. We took it in with us to the doctor as soon as the test was over, and we showed him how much I had thrown up during the test. He was surprised (in more ways than one lol ), and agreed my vomiting had to stop.It felt awesome to finally get it through a doctor's head what I go through everyday, although I admit, bringing in my own vomit was really weird! He wanted to give me a G-tube, but we decided on an NG because I don't think I'm ready to have a tube sticking out of my gut lol. He also said we could try and NJ which would go into my small intestine if the NG tube doesn't help enough. I can't wait, I really hope it helps!

Melissa WELCOME.  I have had my ears checked, I have also seen a chiropractor.  But thanks so much for the thought.  to answer your question, Ummmm listening to worship music (quietly), and playing my harp  are the biggest ways I escape. I sometimes do pilates too and that helps get my mind off everything too.....

My question.. do you have a pet?  If so, i would love to see pics!! I will post a couple of mine next week.

- Logan

Monday, August 22, 2011


Ohhh heyyy guyyss;) I can't beileve i rememberd to post ! Haha anyways my names Mel or Melissa whatever you guys wanna call me, 18 and from jerseyy. I'm going to be filling in for Rhianne for the next couple weeks. Rhianne, you will deffiantly be missed and everyone will be dying for you to come back by the time i'm done ;p My posts are going to be all over the place, thanks to the brainfog we deal with, i have a very hard time finishing what i'm tying to say and sometimes it may not make sense but i'll try as much as possible. 
I've been sick for 7 years now and homebound for 4. Thankfully I do well with car rides, so i go on little adventures with my boyfriend, Chris every now and then. I am very fortunate to have the boyfriend i have, He takes care of me even when i don't want him too and deals with my crazy mood swings. I have crazy anxiety,as most of us do and it can be very difficult to deal with me when i'm like that.

The past month i have been going to see a auyrveda doctor and trying to do that aproach. It's all herbs and rebalancing of the body, trying to get down the cause of everything by kenisiology? (i can't spell).It comes with a crazy diet and all these remedies. It's alot of work but i really hope it's worth it because I can't live like this anymore and i really want to go out to help people struggling as well.

oh and Logei i have a question for you lol first off i wanna say i'm so sorry you throw up so much and about that jerk doctor ! but have you had your ears checked out for imbalances? I was reading your posts and it made me remember my chropractor nerologist i use to go to that fixed my gag refelxes because one side was completely not working and i used to throw up everymorning freshman year untill he fixed that. Also he had this girl that used to projectile vomit (sorry for the image) everyday and it was because of imbalances in her ears. We have these little rocks in our ears and when some go into the canal we become off balance and experince crazy symptoms.

I don't know if i'm allowed to answer questions but hey why not lol

Cheyanne: Do you have trouble watching movies in the theater?
I havn't been to the movies since i was fouteen fifteen and don't remember how it was. I liked any dark places because then if i faint no one can see me lol (huge fear of fainting infont of people.) Now i would most deffinatly not be able to handle it.sensory overload lol

Erin: What is your favorite television show?
For someone like me who hates watching t.v, i like alot of shows ! Secret life of the american teenager, Pretty little liars, Jersylcious, Jersey shore, Parenthood, The Office, Degrassi, and Teen mom

Michelle:Do y'all plan on going to college? And if so what are your plans to major in?
I want to go to college soo bad ! Also i want to finish cosmotology school because i had to drop out my junior year of high school when i got too sick.I want to go far away like arizona or tennessee. I know i want to major in physcology but what to do with it i'm not sure as of yet. All i know is i want to help people like become a social worker for youth detention centers lol

My question:
What do you guys do to "escape" from your sickness?
for me its the car rides

I hope all of you guys are having a good day !

Sunday, August 21, 2011

We're All Just "Seeds"

I have had such a busy weekend, and am utterly exhausted.
I thought I would share a song with you all that we sang during church almost every week in grade school. I have been looking for a long time for this song, and I finally found it on YouTube!
It is one of those sounds that is very special to me and I will never forget it.
I hope you all are well, I will answer/ask questions next week!

Sometimes I stop on my way home
And watch the children play
And I wonder if they wonder
What they'll be some day
Some will dream a big dream
And make it all come true
While others go on dreaming
Of things they'll never do

We're all just seeds
In God's hands
We start the same
But where we land
Is sometimes fertile soil
And sometimes sand
We're all just seeds
In god's hands

I saw a friend the other day
I hardly recognized
He'd done a lot of living
Since I'd last looked in his eyes
He told his tale of how he'd failed
The lessons he'd been taught
But he offered no excuses
And he left me with this thought

(Repeat Chorus)

And as I'm standing at a crossroads once again
I'm reminded we're all the same when we begin
And in the end?

(Repeat Chorus)


We're all just seeds
In god's hands 


Thursday, August 18, 2011

School Shopping!

Today I went shopping with my mom, sisters and nephew for shoes and school supplies. We got almost everything and we're going shopping for clothes tomorrow. So I'm exhausted from doing that.

Yesterday my mom got the results from my Holter monitor and apparently I was extremely tachycardic the whole time, with an average heart rate of 160. So my cardiologist wants me to get another stress test, even though I don't know the point of it because I'm obviously only gonna last for a minute or so.

I'm really shaky right now, so I'll just move onto the questions.

Cheyanne: Do you have trouble watching movies in the theater? Not really, I just get really cold and uncomfortable, but I don't go much.

Erin: What is your favorite television show? Doctor Who is definitively my favorite, but I like everything from Mummy Detectives to Project Runway, Tosh.0, and Medium. I do have a lot of shows that I watch, but my sister and I usually wait until they're on DVD so we can get it on NetFlix. 

Michelle: Do y'all plan on going to college? And if so what are you plans to major in? All my life I wanted to be an OB/GYN, but now I kind of want to be a neurologist with a specialty in the ANS. But for my BA I would major in either Biology or pre-med. I even have my colleges picked out; I'm so excited.

I think that's all of them!

Bis zum nächstes Mal,

Wednesday, August 17, 2011

Ouch, my leg!

Hello again. :)

This week has been a bit crazy because we have been busy getting last minute things for school. My orientation is Friday and I am beyond nervous, but after that day I should be calmed down a little. I have the tendency to worry and fret about every little thing.

We think we finally found what really caused my POTS! Everything makes sense now. I believe it is a connective tissue disorder of some sort. My mom found the tests you take that the doctor would give you and I got 7/9 points. I am pretty sure that is a good inclination that this is what it is. I have all of the signs, except I don't have things dislocate all of the time. My only problem is the pain. I get pain in all of my joints and even my ribs are really sensitive. I am thinking my past years of playing soccer and softball before I got sick made it worse. The position I played in softball was catcher and I was constantly up and down on my knees. Now my right knee is my worst problem. That leg gives out on me frequently and always hurts, but just mainly in the joint. I still think that the Gardasil shot and my surgery made my POTS worse. After each thing it gradually gets worse.

I am not going to ask a question this week only because I asked two last week when I subbed for Hannah. And as for Logei's suggestion about the questions my vote is to keep them coming from everyone. They are very insightful. I would like to get to know all of you better. If you have a Facebook you can add me here or email me at:

Now for the questions and stuff:

Erin's Question: What's your favorite tv show?
I am definitely not a big tv person, but I do have a few shows I watch every week without a fail. My favorites are Switched At Birth, The Secret Life of the American Teenager, Teen Mom, and Pretty Little Liars.

Michelle's Question: Do y'all plan on going to college and if so what do you want to major in?
I am definitely going to college. My whole life I have wanted to become a pediatric oncologist. Right now I am not very fond of doctors though so I'm not sure anymore. My backup plan would be to go into journalism. I really do not know what the future has in store for me. Even if I cannot go to a university when the time comes, I will go to the community college for a couple years and see where that goes. :)

Response to Logei's post:
I have had the PH probe done. I had it because of severe reflux/heartburn and it proved just that. None of the meds worked so I had to get a Nissan Fundoplication. Now the reflux is gone and I cannot throw up. My heartburn is indestructible though because it still hasn't stopped that completely.


Monday, August 15, 2011

The 7th circle of Hell

Hey Y'all it's Michelle subbing for Miss Rhianne! :)
So in 7 days I'll be starting my Senior year of high school, I'm predicting it to be the most stressful year of my life.
Even more stressful than that I still have to approach my parents about not going to college. I just think that my main focus should be getting better and having a stress free life. And in doing that I don't want to have to stess over getting scholarships, taking the ACT, and in all applying to college. I already have too many responsibilities  in school with AP classes and I don't want extra baggage. And honestly my parents don't have enough financial support to put me through school. Hopefully they'll give me the support I need.

In other news physical therapy isn't going so well. It helps my headaches temporarily but then my body pays the toll for days. Hopefully in time it will be better and not as hard. My physical therapist is nice though, her name is Michelle so I don't forget it :)

On to the questions I suppose!
What is you favorite TV show?
Well there is way too many shows I love to watch. I lovvvveee Degrassi and I've been watching for years. I also love Breaking Bad, Jerseylicious, The Nanny, anything on the foodnetwork, and I'm a sucker for Victorious and Spongebob :)
Are temperature regulations common for everyone else?
I never really check my temperature as often. I do know that I get cold more often now especially in my joint areas. And I have been experiencing hot flashes.
Cheyanne's Question:
How well do you tolerate meat? And do you get terrible stabbing constant pains through the abdominal area?
Meat I can tolerate very well most of the time. But stuff like sausage and fatty meats make me very nauseated and queasie.
And for stabbing pains, I used to get them all the time when I first got sick about 2 years ago. It felt like a fire in my stomach all the time. But now I just have trouble with bad gas and fullness all the time.
My question:
Do y'all plan on going to college? And if so what are you plans to major in?

Now A note from Rhianne!
Hey guys, it's Rhianne here. As some of you guys know I am taking time of because of my exams comming up. I will be back early November. ♥♥ you guys! Mel will be subbing for me.

til the end,
Michelle <3

Sunday, August 14, 2011

Small Fiber Neuropathy

Last week I posted a question, asking others if they had Small Fiber Neuropathy

...and I found out that no one knows what it is! 
So, I thought I would give you all a little more information.

Small Fiber Neuropathy effects/damages your nerve endings, primarily your hands and feet. It can be difficult to feel heat or cold on your hands/feet and even vibrations or feelings. Often people experience numbness or tingling in the extremities and it can feel a bit like "Raynoud's Phenomenon".

There are different causes of small fiber neuropathy. One of the main causes is diabetes, but researchers have found that it can also be caused my hereditary or autoimmune disorders.

When the nerve endings get damaged or weakened, the blood circulation becomes poor. This can lead to things such as loss of balance, low blood pressure, low muscle tone, body weakness (especially in the arms and legs), sweating, constipation, bloating, diarrhea, and more.

A lot of these symptoms can exaccerbate POTS and (according to my neurologist) many patients with POTS do not have "just POTS", they have other conditions that are associated with POTS and Small Fiber Neuropathy is one of them.

If you have any more questions, feel free to ask me :)
(Some information for this post was adapted from this website)

Now for the questions...

Cheyanne's Question(s): How well do you tolerate meat? And do you get terrible stabbing constant pains through the abdominal area? When I was seven, I was diagnosed with IBS. Throughout the years, I tried multiple things trying to figure out triggers, reading up on books, research, you name it. The one thing that I read and tried that seemed to really help is avoiding red meat and caffeine of all kinds. Now, I can't tell you exactly why the red meat was particularly difficult, but I will let you know that I eliminated that from my diet for YEARS and it did help. Also, make sure you avoid high fructose corn syrup, and caffeine! Do you have trouble watching movies in a theater? YES! I tend to get motion sickness really easily and movies can be an awful trigger.

Rhianne's Dare: I want you to write a positive paragraph about whoever posted before you on the blog (Cheyanne). Girl, you seem incredibly sweet and such an optimistic, encouraging girl! I wish the best for you and want you to know that I am here if you ever need anything. Also, you are absolutely beautiful! :) 

Miranda's Question: Are temperature regulations common for everyone else?
Yes. My temperature average is usually 96.5(ish) - I always run a LOW temperature (as does my mom) and I tend to get 100.2(ish) fevers quite often...especially when I have a period. Usually I am very cold, but I have awful night sweats. My temperature fluctuates so much!

My Question: What is your favorite television show? I want to see if anyone shares with my love of certain television shows :)

Take care girls & have a great week!

Friday, August 12, 2011

I know I posted the other day but...

Hannah asked me to sub at the last minute because she is too sick too tonight. So I hope she feels better. :)

Um..I really don't know what to say because I said everything on my post on Wednesday. I just got back from Sonny's. I didn't really want to go because I don't eat meat and that is really all they have there. I just got 3 sides (fries, green beans, and BBQ beans). I barely ate it because I keep taking a few bites and getting full so quickly. Then I went to Publix afterward and was so dizzy that I ran into stuff LOL. I walk like a drunk person at times. My stomach has been a bit better since Wednesday and my pulse isn't as good as it was last week. It is back to my normal POTSy self, which is between 115-150.

I guess I will only answer Miranda's question because I answered all of the others last time.
Miranda's Question: Are temperature regulations common for everyone else?
Absolutely. Just recently I have been spiking low grade fevers and my mom will get all concerned. Then she will check it again 30 minutes later to see if it went up and it will be gone. I am constantly cold. it is 100 degrees in Florida where I live and usually I am dressed in jeans and a hoodie. Other times I get hot flashes, but those aren't as prevalent.

I guess I'll ask another question.

My Question: Do you have trouble watching movies in the theater? My noise/light sensitivity is so bad that I really struggle watching movies. I can watch 30 minute TV shows without it effecting me, but just not movies.

I hope you all feel better! God bless. xx
-Cheyanne :)


I knew I was forgetting something, I just didn't know what it was until I looked on my blogspot tab! Anywho.. The past few days have been busy (and very exhausting). Yesterday I went sailing/fishing with my dad and sister again then today I went out to dinner, although I didn't eat anything, with people from my choir. Tomorrow my dad wants to go horseback riding, so even though I'm exhausted, I'm really looking forward to that,

My sleeping patterns are slowly coming back to normal, and that's a good thing since I have to get up early every morning for a class. I am not looking forward to that, but atleast I can come home after. I only have 11 days until my first day as a junior! My hips/knees are still hurting. It was raining here a few days ago and that made it worse. I've managed to figure out a way that I can walk without putting much pressure on my knees and not moving my hips too much, it looks weird, but it helps. GI is still the same (choking, painful eating/drinking, regurgitation, etc.) even though my Upper GI results came back normal. So I go back to the gastroenterologist in two weeks, which also happens to be the first week of school. Cardiac symptoms has let up a bit, except for my usual blindness when standing and crazy blood pressure, but at least I'm not having palpitations all day long.

Okay, time for the questions...

Cheyanne's Question: How well do you tolerate meat? And do you get terrible stabbing constant pains through the abdominal area? I don't eat much meat, but I don't tolerate any food well, so I can't really be of much help. I have been getting awful stabbing pains in my abdomen recently though and I have no idea why, I'll have to ask my GI doctor when I go back if he has any ideas.

Hannah's Question: What is one positive that has come from your illness? I agree with everyone else, about meeting other people, but I also think that it really made me thankful for all the "small" things that I'd usually take for granted. And making me into a medical dictionary is also a good think. :)
(Also I have a question for you: Do you know of anything that might stop or trigger your tremors? I've been having a lot of small ones for the past few days and they're really starting to freak me out.)

Rhianne's Dare: I want you to write a positive paragraph about whoever posted before you on the blog (Cheyanne). I don't really know you, but I'd like to! You've only posted a few times, so I can't really say much about you. But one thing is, don't be nervous about high school, it's really not as bad as everyone says.

Francesca's Question: Does anyone believe in haunted dolls or paranormal stuff? No, I don't, but like Logei I believe in angels and demons.

Erin's Question: Do any of you have small fiber neuropathy and if so, what helps? No, I don't, but I wish I could help you!

My Question: Are temperature regulation problems common for everyone else?
Recently, I've been freezing, but when I put on a blanked I feel like I'm super hot and I start sweating really bad. I know I have Raynauds, so that doesn't help either.

I think that's all of the questions, so
Bis zum nächstes Mal,

Wednesday, August 10, 2011

Well it is raining here this morning and for some reason it makes my body aches worse. We think I have developed fibromyalgia because I am hurting all of the time. Hopefully it will stop raining soon. 

On a positive note my heart symptoms have been fantastic this week, other than blacking out. For some reason my pulse wants to stay around 110. One day it was even in the 90's standing up!! It is really weird for my heart rate to be in that range and I am still blacking out. Does that happen to y'all?  Since my heart has been more on the mild side, my stomach wants to get really bad again. My dysmotility is acting up in my stomach and intestines. Last time my stomach started getting really bad I was kind of having the opposite problem and everything wanted to come right back out as soon as it went in. Now I am just super nauseous from the food just sitting in my stomach I suppose. I was tested for gastroparesis at one time, but retested and it was fine. I guess it is going back the other way again. I feel like all I have eaten this week is oatmeal and smoothies lol. The other day I had a strawberry banana smoothie with protein powder and almond milk. My mom meant to put chocolate soy milk in it, but grabbed the wrong carton, but it was really good. I would suggest you try it. :) Off and on throughout the week I keep running a low grade fever and then later it drops and then comes back. I think that is a bit odd.

I am so nervous because I am going back to public school for the first time since 7th grade, but only for one period. I am going to be a freshman in high school. I am excited, but yet nervous. I'm mostly afraid that everyone is going to think I am faking sick because I have heard so many horror stories about that. Also, I am worried about getting up the stairs. My open house is on the 19th, but I already know what classes I will be taking. I will be in English 1 honors and Geometry honors. A few times a week I will go to English and then the remainder of the days I will go to geometry. They have it on a weird schedule. I will only be there an hour and a half so I should be able to make it. 

No for the questions..

Do you have problems with blood sugar?
Not that I'm aware of, no. 

What is one positive thing that has come from my illness?
It has taught me not to take everything for granted like I used to. Also I feel that it has made me more mature. And of course all the people I have met through this.

Do you believe in paranormal stuff?
Yes, I believe there are "ghosts" and things like that.
Do I have small fiber neuropathy?
I will have to look that up because I don't even know what it is.

The Dare:
Logei I love the fact that you are positive in a spiritual manner. You're right, Jesus does love us! This is kind of difficult to write because I do not know you, but we should get to know each other. :) From what I can infer from your posts I can tell you are a strong person, most people who suffer with illnesses are. You also seem very adaptable to try new things like the raw diet. I have just recently been experimenting with my diet as well.

My question: How well do you tolerate meat? And do you get terrible stabbing constant pains through the abdominal area? 
For some reason I cannot tolerate it very well. I have just recently started having those pains just randomly and they are excruciating.


Tuesday, August 9, 2011

Esophageal Manometry

Hey guys, I had my esophageal manometry yesterday and it really didn't go well.  I didn't get hardly any sleep, and then we got up really early in the morning to go for the test.  I got sick from the car ride and from the noise and lights in the hospital... I must have looked absolutely miserable cuz in the waiting room this dude I've never met before walks up to me and says "WHOAH, you don't look very happy." And then walks away. I'm not kidding. I was sitting there gawking like (did he really just do that?) Then I looked at my dad and we both laughed!
So when we got to the right floor where the test was being done, a nurse calls me back, and she was so nice. She turned off the lights when we told her I was light sensitive, and she brought out this nice warm blanket (it was freezing in there).  A few minutes later another nurse comes in, and explains the test to me.  Now my throat and nose are really really sore to begin with (from vomiting so much every day), and she takes this tube (a bit thicker than a straw), told me that my nasal cavity was small so it would hurt, and pushes it up my nose and tries to get it down my throat.  She couldn't get it down my throat right! It hurt so bad, my throat kept like closing up on it, and it was hard to breath.  Eventually I begged her like a sissy to take it out!
She reminded me that if I didn't do the test, the doctors might not help me.  So I asked her to try again, and she did get it down eventually (thank God), but it took her forever to get it in just the right place.  Then I had to swallow sips of water and this banana flavored gel. (It was weird.)  That part really wasn't so bad. It was painful, but not as painful as her putting it in or adjusting its position.
Finally she pulled the tube out, I had some dry heaves from all the water and gel in my stomach, and my nose bled a little, but I can't tell you how happy I was to get to go home!!
(I don't ever want to do that test again!!)

Do I have problems with blood sugar?

Well, sometimes as a result of low calories my hands shake from low blood sugar, but otherwise nope!

What is one positive thing that has come from my illness?  I gotta agree with Rhianne, meeting you guys is one of the top on the list.  In addition too that, I think it has given me the opportunity to learn things that I never would have had I not gotten sick.

Do I believe in paranormal stuff?  I believe that there are angels and demons, but ghosts, no. 

Do I have a small fiber neuropathy?  Girl I don't even know what that is. lol

Rhianne, you have an all-purpose sense of humor which I love.  You have confidence and you aren't afraid to speak your mind.  And best of all, you aren't afraid to have FUN!  But I'm in a terrible mood, and that's the most you're getting out of this grumpy bear! lol

Monday, August 8, 2011

Long post

Hey people, it's Rhianne here. You're lovely Australian blogger. :) Hehe anyway, I think I have been absent for like two weeks now so this is going to be a long post, so if I bore you guys to death, don't worry, I know CPR. ;)

As I think all our lovely readers know I have been in  hospital. It has been my 4th admission this year (and hopefully my last).

It went well. My day consisted of school in the morning, then lunch, physio, group where they do arty stuff (I pimped my walking stick actually) and then the rest of the day was mine.

So that's what happened.

Anyway the first Tuesday of my admission, I had my admission meeting where we talk about what we want to accomplish out of the admission and blah, blah, blah.

This meeting brought up the idea that convursions is the reason behind some of my symptoms.

For those who don't know what convursions is:

Convursions: turning mental harm into physical symptoms

And I absoulutely hate that word. Why? Because when I first got sick I went to a certain children's hospital. I saw the neurology fellow for hours but he didn't know what was wrong so he brought in his boss.

Who is probably one of the best paedrictiac neurologists in Australia!

And she saw me for 5 freaking minutes and gave me the convursion diagnosion. This landed me in fortnightly psych appointments for like three months where I got asked whether my Dad was raping me.

hence, I hate the word.

So when doctors I like brought up the c-word I may have overreacted. They left me to think about it for the first week though but I came to accept the diagnosis. Stress causes extra symptoms and I think its one of the primary causes of my jerking.

Anyway, I also have the geneticist appointment which went good, they decided I definately wasn't hypermobile or had any forms of hypermobility (I failed at the tests). They decided my deformed chromosome was probably of nil clinical signifance but they tested my parents to see if they have it to.

I also had neuropsych testing which was evil. It went for four freakin hours. It was memory, pattern solving stuff and it was annoying. Some parts were way hard and some were so easy they were dumb.

My neurologist (who I love) said that I seem to be improving and he wants to get following up with me.

Sports medicine (which I also love) redid strength testing on me. I have improved a bit, especially in the left leg and they told me what they wanted me to do in terms of exercise and stuff.

I am probably forgetting something but oh well.

I got discharged Thursday and I drove home on Friday and guess what? Friday was my brother's birthday.


Speaking of birthdays it was Tana's birthday in my absence so happy birthday Tana. I hope you enjoy being fifteen and you had a great day and you are feeling okay. <3

I went back to school today and it was hard but not as hard as I thought it would be. I didn't have a pots attack but I am so ridiciously fatigued. I feel like a zombie.

Now should I stop ramblin' and move on to the questions? I think so.

Michelle- Thanks so much for subbing for me, you did a great job (by the way those shoes were so cute).

Logei: Haha, I would like a bracelet but I am not comfortable about giving out my address so I will pass. I hope you are feeling okay missy, I need to send you an email. Is raw going well for you still? And I watched the video you made about the trip, and I feel for you. I know they say pots is an "invisible illness" but you looked terrible (not in a mean way or anything, I am digging myself into a hole arent I?) I am just hoping that things work out for you soon because you are such an amazing person. Love you Logei!

Cheyanne: I read on Facebook that you weren't feeling well. :'(

Miranda: Glad your upper GI went okay, except for the choking that sucks. And your swelling from your wisdom teeth extraction has gone down (no more chipmunk). Hope you feel better soon.

Question: do you have issues with blood sugar?
I don't take mine regularly but they take it at the doctor's and I never have an issue with it.

Question: What is one positive that has come from your illness?
Meeting you guys? I think the biggest positive is the strength I have gained from this and I believe I am a better person because of this.

Question: does anyone believe in haunted dolls or paranormal stuff?
Haunted dolls? I am not really sure. But I have a haunted house story which I think might fit in here.
Okay my best friend lives on a massive farm and there are heaps of abandoned houses. We went into one and it was a U shaped house right. In both the rooms on either side of the U there were birds that were just circling the rooms. We tried for ever to get the birds to stop flying in circles (we through bricks at them and everything). In the middle of the U shaped there was a tie hanging from the roof and my friend was like, "oh i a committing suicide" (joking of course). These birds stopped flying in circles and both went straight at us and swooped for us.

Then when we went back a year later, we got chased out by evil birds again.

You tell me.

Do you have a small fiber neuropathy? (I think that was it)

I have nooo idea what that means. Can you explain it in your blog?

I want you to write a positive paragraph about whoever posted before you on the blog. :) I'l do whoever posted before me when I post next Monday.

And I just did the longest post ever so bye guys.


Sunday, August 7, 2011

What a week.

 Happy Sunday Ladies & Gents :) we have any gents?

On Monday, I met my new PCP/Internist! Finally, I am one step closer to having my doctors ALL be in the same location! We have so many different hospitals in Omaha, & it makes things so easy when you can have all your information in one place!

I didn't spend a lot of time with her, as I was just establishing new care, but she seemed good. She even said that whenever I need fluids, I can just call the nurse and she will set up a room in the infusion center for me the same day (if I call in the morning). I asked her if she wanted my neurologists slip that stated I could have fluids, and she said "Oh no, that's fine! You just call whenever you think you need fluids and it'll be ready!) WOW! How nice is that?!

I have two new appointments though. Gosh, just when you think you are clear from doctors for even a month, they throw a new one your way! She wants me to get a THIRD opinion regarding my breathing and asthma. My shortness of breath can get really bad and she wants to get another specialists opinion on whether the asthma is getting worse or it's my EDS (as this condition can make breathing very difficult if you the collagen is affected around the lungs). Hm, we will see...

Also - I think this is important to share with you all! I have awful sinuses and always am congested. I told her that I read it isn't good to take cold medicine/antihistamines with POTS and certain medications, plus nothing was helping. Anyways, she said absolutely DO NOT take cold medicine/antihistamines with the drug "mestinon."

So, just in case any of you are on mestinon, do not take over the counter cold medicine! I have a deviated septum (which I also just learned happens in people with EDS because the collagen falls and forms this "deformity... crazy, huh?) and she said surgery to fix that would greatly help my symptoms and be the best option! So an appointment with an ENT is in the works, again.  I have thought about this for awhile and have been told by a previous ENT that I should get it over Christmas break, I will consider getting it done!

I sure am oh so lucky and ever so thankful :)
It just goes to show that through years and years of struggling and frustrations, there also is a light at the end of the tunnel. You just have to have faith and never stop believing...


First, it's great to meet you! :) 
What do you think is the hardest part about having a chronic illness?  
The frustrations of people around you "not understanding". I have been told far too many times, "Well, at least you don't have cancer". People don't understand the devastating effects this illness has on you. They assume that just because "you look good" that it must not be "that bad". Oh boy, if they only knew. That is what I think is the hardest part... a constant feeling of "defending yourself to everyone on the outside (and even medical professionals)...
Has anyone done PT, how did you like it? Did it help?  
I have actually never tried Physical Therapy, nor has it even been mentioned to me by my doctors! 
I have thought about it though, as doing exercises on my own seem impossible at times.

Hello girl! I haven't had a chance to get to know you, but I am excited to start :)
Do y'all get brainfog and how long does it last?  
Oh, the lovely brain fog. I feel as though I get brain fog very frequently. Daily actually. there are times when I completely forget what I am saying or it's like, I know the word I want to say, I can picture it, but for the life of me, I cannot figure out what that word is. It's so frustrating. 
It has also taken a toll on my academic performance, and makes it extremely difficult to concentrate on research projects and/or homework.

I am so happy that your wisdom teeth removal went well! I know that was awful for me and I was praying you would make a good recovery! Also, thank you for helping me out with my project :) You were a lifesaver! Thank you, thank you.
Do you guys have problems with your blood sugars?  
When I was in high school, I had hypoglycemia but now I have no troubles.

How interesting to hear that you love sign-language! I have been talking to Hannah about ASL for awhile and I have completed all five ASL courses at my college. We should all skype and sign :) 
How many of you guys wear medical alert bracelets?  
I actually don't - Since our condition isn't life threatening, I don't really feel a need for it? 
That's just my opinion and I comfortable with the people I am around.
But medical alert bracelets are great if you like them!

I am so glad the procedure went well for you, but so sorry you are facing such awful residual effects. I hope that brighter days come to you soon :) PS I can't wait to skype soon! Someday girl, someday we will! Just work on getting better!
What is one positive that has come through your illness?  
One? I think there are so many positives that have come through POTS and other chronic illness I face. I have learned to appreciate the small things in life and be happy for just that one day I get to spend with my friends. It has taken me quite some time to learn that I just can't do it all, so learning to really treasure those moments you do have when you feel good is something that I love.

Does anyone believe in haunted dolls or paranormal stuff?
Oh yes. This may sounds odd or hard to believe, but the house that I grew up in until I was about 12 was haunted. The television would go on and my mom would yell at my saying "Erin, I thought I told you to turn that television off!" I would cry and say "Mom, I did! I swear..." then she would go an turn it off. It would click back on again. Then we even umplugged it and went to bed, as my mom was now getting nervous. Needless to say, we woke it, it was plugged in and ON! Everything that happened ALWAYS happened on a Friday night. Weird? yes. but it's true!!!

I love the bracelet that you made. I would LOVE one :) 
I will email you soon my address!

My Question
Do any of you have small fiber neuropathy and if so, what helps?

I hope everyone has a good week!
Take care,

Saturday, August 6, 2011

Smiling Saturday :)

Happy ,Happy Smiling Saturday
can you believe it I actually posted on time.Perfectly Punctually
anyway on to the good stuff ,hmm allot happened this week so I'm going to cram it in this one post and if you wanna hear the juicy details just go to my personal blog
and hit the big button that says subscribe :) So its been a rough week potsie wise but its defiantly been interesting like Getting all dressed up for senior pictures and stressing about how they will turn out  which i hope they will be good.My back locked up like 3 nope 4 times last week three trips to the ER
oh joy that's soo not my definition oh fun even thought i do enjoy being waited on like a princess lol (kidding ) I never seem to remember birthdays unless facebook tells me that's pretty darn sad
but I did remember my moms which is august 11th.We have this friend and all she cares about is present she like 32 and cried because she didn't get gifts on her birthday. I was allways told that presents don't matter its the thought that counts  comment if you agree and like second of all once you have kids and are an adult birthdays aren't usually a big deal like she had the nerve to ask how much we spent on her !! like who asks that ?? its very rude and then she buys my mom a shampooer for her carpet and says that's your birthday and Christmas present  like we never asked her to buy that i never knew anyone who expected presents besides little kids.Oh and speaking of birthdays Happy 100th Lucille ball (i love Lucy ) RIP maybe they will run a marathon of i love Lucy
yesterday i thought i was going to be on "what would you do " there was a dude he kept cussing and saying the f-bomb in a kid aisle at the thrift shop like seriously ? theres kids there then he kept following me and my mom. that creeper ! turns out he had teriets that's why he kept saying the fbomb but like you shouldn't go in the kid aisle I'm just glad little Sophie my almost sister wasn't there
her current word is f*****ker she picked it up somewhere were trying to get her not to say it but could you imagine if she was there she be saying it right back. I'm starting to ramble lets get to the questions

Michelle asked whats the hardest part of having a chronic illness ?
my anwser would be more like whats the hardest part of having a invisible illness ? people tend not to believe you or there like but you don't look sick ?

Has anyone had p/t (physical therapy) an liked it ?
yup i see Dr lemoine 3 times a week and love it i feel like it helped allot considering how
de conditioned i was before i started i couldn't even roll over with out getting winded from being bed ridden

Miranda asked  Problems with blood sugar ?
Ummm not that i know of like some times i feel like i have to eat right away but I'm not diabetic or anything I'm insulin resistant though

Cheyanne asked  Trouble with brain fog how long does it last ?
yea i sometimes get it don't we all even non potsies ?

Hannah asked  Positive that has come from illness ?
I really like this question i feel like most people dwell on the cons not the pros
I feel like having illness has made me a better person I'm not like a super devoted christian or anything
but i appreciate life more and i try to think of the stuff i can do instead of can't
it really makes you wake up and you realise there is always someone worse than you
and to be thankful for what god gave you  and that theres a reason why we are sick its part of gods crazy plan that we probably will never understand  but its for our benefit like maybe we all were supposed to have pots maybe one of us discovers a cure or something ? btw Hannah i still cant figure out how to make the name thing lol I'm Internet uncoordinated

finally my question is not pots related
Does anyone believe in haunted dolls or paranormal stuff ?
after stuff ive witnessed i sure believe lol

Friday, August 5, 2011

Forgetful Me!

Hey guys! I literally completely forgot to post last week. If that's not brainfog... I don't know what is lol. Since I missed so many questions, I will start with those!

Michelle: First, it's been great getting to know you! Welcome, welcome! Your questions were, What do you think is the hardest part about having a chronic illness? The emotions of it all. I think we could handle our symptoms if they didn't interfere so significantly with our goals and relationships. But as much as I want to get better and am still trying like crazy (we all are!), I am grateful for this experience. It has given me a new perspective on life. And,  Has anyone done PT, how did you like it? Did it help? First, I need to ask you what kind of PT can you do regarding your headaches? I get lots of headaches! Would it be vestibular? Vestibular was recommended to me but I never did it. I've done pilates on my own, started from my bed...Helped me get out of bed after a year! That and new medication. =) Sorry you are feeling so sick!

Cheyanne: It's been great getting to know you too, welcome aboard! And this reminds me, I haven't sent you the list of foods that have B-1 yet! That had to be really scary about the issues found with your lungs. I am relieved to hear that the issues were not what you originally thought or that they didn't worsen.  I also wanted to say, I've heard of quite a few people developing POTS after Gardisil. May this be a caution to our readers! I'm sorry you got sick after it! There should definitely be a warning regarding it. Especially because you are pressured by the medical community to get it and feel you are doing something positive.  Your question was, Do y'all get brainfog and how long does it last? I find that my brainfog is significantly impacted by my sleep. Of course adequate sleep can seem like an impossibility to us! I do believe it is also affected by my diet and vitamins. I get horrible brainfog sometimes where I'll be in a conversation and I will have known what we were talking about in the beginning, but then I forget. My brain fog usually lasts weeks at a time when it's really bad. Lessened is just random times through the days and weeks.

Miranda: I'm glad your mouth is doing better and I sure hope your upper GI went well! You are very welcome for the stuff :). It's interesting how you get tremors like I do. I really think our symptoms are so similar, it's crazy! I have actually been stung by a jelly fish before and it hurts so bad! It was when I was a child, but I still remember, that's for sure! Lol. I hope it gets better!  Your question, Do you guys have problems with your blood sugars? Yes, a Doctor told me they thought I have reactive hypoglycemia, but we didn't follow-up with her. But I still get symptoms of it where my sugar seems to drop. I haven't been taking it, but protein has seemed to be doing wonders for me, and when I don't have it...It's not a good situation, I'll say that!

Francesca: Glad you are a new weekly poster :). That is so great that you know both Spanish and ASL, it's my goal to learn both of those! I did take Spanish in highschool but it was on a computer program and I forget most of it! That's so not cool that you get tremors that look like seizures too. Have you had an EEG?  Your question,  How many of you guys wear medical alert bracelets? I do! Now however, since I am starting to get a better idea of what the bulk of the medical community knows about our illness, I want to update it and put an informational website or something on there. Oh, and your question about the signatures, I made mine on I just made a new one!

Erin: I don't think you had a question, sorry if I missed it! That's awesome that you made an informational blog solely for POTS/EDS! I know Miranda has something like that, too. Great idea! Also, glad to have you as a regular poster as well!

Logan: I am so happy that you are doing so well! Praise God! Whoo to the Hoo!! I don't think you had a question either, sorry if I missed it!

Tana: You are still missed! And I am glad you had a good Birthday :).

Rhianne: You are home! Welcome back! I hope you get some lovely refreshing rest!

Okay, since answering the questions took a lot of space, I will be brief about how I've been. I got my cystoscopy done and I do believe it helped. Since the day after though, I've not been doing so well. It was this past Monday, and that and a few other factors have really taken it out of me I think. Today I was in my recliner all day!

My question: What is one positive that has come through your illness? For me, it's becoming closer to God and through that, I think I've become a more understanding and compassionate person.

Love ya ladies, Hope you are all doing well and have a great weekend!

Less Than 10 Hours!!

I have less than 10 hours until my appointment for my upper GI! We have to leave at 6:30 AM to be at the hospital on time. I'm seriously doubting I'll sleep more than a few hours tonight, so I'll just sleep in the car. I'm hoping that we can get me a wheelchair at the hospital, since I can't even stand without going blind. I have to stop drinking/eating at 1 AM, but that's not so much of a struggle, since eating or drinking anything makes me get excruciating pains now.

For the last two days I've been super dehydrated (more than my usual), and I think that's why I've had really bad vertigo episodes every few minutes. And my blood sugar was way too high, so I'm not sure why that's happening.

I don't know if anyone else has been stung by a jellyfish, but I'm pretty sure I was on Sunday when I went sailing with my dad. My whole elbow is swollen and I can't move it around that much. I might be sailing again tomorrow (not likely!) with my dad and his friend. Sailing is one of the few things that I can do and POTS doesn't interfere; it's like as soon as I get on the boat, all my cardiac symptoms aren't as bad.

I'm not even going to share my opinion on complaining, because I'll just end up getting mad. Speaking of that, I haven't taken my meds, any of them, including my Luvox, for the past few days, so I'm starting to withdraw and get very short with everything. When I take my POTS meds, I feel no difference than when I don't take them, so that's one of the reasons why I haven't been taking them (the other is my swallowing).

Moving onto the questions.. I only think Michelle and Francessca asked one.

Francessca's question: Do you have a medical alert bracelet? Yes I do, I have two posts on my personal blog about it, with pictures. Here are the links: first post & second post. I'm planning on getting a second tag and making some bracelets myself.

Michelle's Question: If you have done PT, how did you like it? And did it help? No, I haven't done PT and I honestly don't want to right now. I think that if I get my symptoms controlled better, then maybe.

Rhianne: I bet you're happy to be out of the hospital!! You should message me on Facebook and tell me how it went. : )

My question: Do you guys have problems with your blood sugars? I can't remember if I asked this before, but I'll ask it again.

Bis zum nächstes Mal,

Tuesday, August 2, 2011

Feeling Wonderful!

Hey Guys, I haven't felt this good in..... oh gosh I can't remember. You guys know I've been experimenting with my diet and I can't believe what an impact its having on my symptoms! I feel fantastic! 

Francessca, We might rub elbows about complaining.  I do feel that no matter how bad we think we have it, there is always someone out there who has it worse. Also God's word says to do all things without complaining (Philippians 2:14). However God's word also says that He loves us so much, He collects all of our tears in a bottle. God cares so much about my pain, so what right do I have to not care about the pain of other people? And just like crying, God gives us natural ways to vent when we're upset. I think there is a fine line between whining or complaining, and venting. If someone does complain I should try to be understanding and patient with them, and I certainly will complain at times. I am feeling better, but I'm not healed or anything, and when I feel bad sometimes I'm going to talk about it. That's part of the purpose of this blog right? To help educate other people so they understand what its like to live with chronic illness, and to let others with chronic illness know they aren't alone. 

Rhianne will be happy to know that I took her advice, even though im feeling fantastic I didn't run.  I let physical therapy be my workout, and tried not to overdo it.

 What is the hardest part of chronic illness?  Isolation!

Do you get brain fog?  I used to, but its been better since I changed my diet.  

 I don't have a medical alert bracelet, although I should get one!

 I am doing (water) physical therapy, and it does help so much!


Monday, August 1, 2011

Super Late.

Okay so this is super late but I'm here now subbing again.
My week had been hell symptom wise, but on a side note I did start physical therapy for my headaches on Friday, which really did a bunch to relieve so much stress. But shortly after that my pain kicked my butt and still continues to do so even right now. I have to do 6 weeks of PT and I'm just really hoping something will help better than any pills or nerve blocks.
On a better note my bestfriend bought me some ultra cute shoes.

It's safe to say I'm in loveeeee. <3

  1. On whether I own an emergency bracelet...
I don't own one but I've always wanted to, I mean you never know when it could come in handy.

    2.) About brain fog...
I think it's safe to say I get brain fog quite often these days and I'm not really sure how long they last either :\

My question:
If anyone has done PT, how did you like it? did it help?

til the end,