Thursday, September 29, 2011

Under Pressure

I have so much to do!! And very a very little attention span to do it with. All this week I've been busy with schoolwork and appointments (this time it was for my retainers). I did get a nomination for National Honor Society, which is kind of like the best leadership/scholarship program, so I had to write up all this information and an essay. Buuut I am so excited!! My dad is getting me in to see Dr. Grubb!! We have to wait until my primary sends all my medical records to them so we can schedule an appointment. The bad thing is that he is in Ohio and that's a 6 hour drive from where I live.  Anywho, as of now I'm supposed to increase my Midodrine (that doesn't have any affect on me) and we're supposed to get these urine dipsticks to see how dehydrated  I am. I have nothing more to update so onto the questions...

Cheyanne: I really hope that your flight goes well! I'll add you to the prayer list at school.


Logan: I'm really looking forward to Skyping you! Just letting you know, my webcam isn't that great, but oh well. :P


Erin: I totally understand your fatigue! I am always so tired and even lifting my head sometimes feels like a workout! But your question was do you have a b12 deficiency? No, but I have low potassium and other wacky  levels. 


Have a good week everyone!
Bis zum nächstes Mal,





Wednesday, September 28, 2011

I can not remember anything today.

As soon as I got up I forgot what I was supposed to be doing today. It is one of those days.

On October 6th I am flying out to see the autonomic specialist in Ohio. I don't really know what they are going to do. I have to make a list of all my new symptoms. I'm kind of nervous about going on the plane. I don't really enjoy plane rides because I usually stay extra nauseous the whole time. I love going to airports though and seeing all of the little shops and people. Pray the trip goes well please!

I have this cold that doesn't want to leave. My nose is mostly cleared up now, but my throat still hurts. It wasn't as bad as I thought it was going to be. I have this fear of getting viruses and stuff on top of everything else and it makes me very paranoid and sets my OCD off. I was expecting it to be much worse when I got sick, but maybe it didn't hit me very hard which is a good thing.

I cannot really focus much and cannot think of a question to ask. Sorry. :)

Erin's Question: Do you suffer from b12 or do you have any tips to help fight excessive (annoying) exhaustion?
I don't suffer from b12 (that I know of anyway). I have been extremely tired lately, probably because I am severely anemic, but I just try my best to push through it.



God bless!
-Cheyanne c: 

Tuesday, September 27, 2011

My Turn Already?!?

wow, this week went by fast!

I will start with questions and posts.
 Erin, I do get weakness in my fore arms (and my legs too). I'll just be going along doing my thing and then all of a sudden BAM my arms and/or legs are jelly.  That's happened several times today actually, and I go through periods of time where its pretty much a daily symptom.
It made physical therapy today quite a challenge. 

I do not have a b-12 deficiency, but I do have low bone density so I take extra supplements for that. 

Cheyanne - I was anemic along time ago, and I did take supplements, but I don't remember them making me sick. : / sorry no advice about that.

Rhianne- I have no advice for summer, but i am jealous HAPPY for you living so close to an actual beach. enjoy that salt water for me! And I'm so sorry your stomach is giving you crap. I would suggest a liquid, or partially liquid diet. (One as healthy as possible). But I believe you already tried a mushy liquidy diet and it didn't help much right?

Michelle k - welcome! I love playing musical instruments too, but since I'm sound sensitive I have had to give up flute, and harp is a challenge both with my sensitivity and my bad memory. But I'm determined to play harp anyway. I also love to travel, but you can guess how well that would work out with my sensitivity issues.

Miranda- I miss you and I hope you are surviving some how! I am angry that doctors don't seem to recognize how much you are suffering, and how much you need some help. I'm here for you 24/7, and I have a webcam that works so we can skype now too if you want.

Today was pretty difficult to be honest, lots of sudden weakness (the kind Erin talked about), anxiety, stomach pain, tachycardia, headaches, dizziness, tremors/jerks, red coloring around my eye, vomiting. Not feeling good right now, hopefully tomorrow will be better! Talk to you guys next week.
-Logan

Sunday, September 25, 2011

Utter Exhaustion

---------
Exhaustion
--------
Over the past two weeks, I feel like I am getting more and MORE exhausted as the days go by.
I understand that I am putting a lot of stress on my body with student teaching and all, but it has become quite unbearable. There are times at school when I think I could just fall over because I just cannot keep my eyes open. Usually mornings are worse for that and with the light-headed feeling, too.

I cannot stay awake for the life of me past 9:00pm. 
I am writing this in bed right now actually - I will probably pass out any time here
(please excuse me, if there are a lot of errors!)

I do have b12 deficiency and I am thinking that the pills I am taking are not being absorbed. It was a debate between my neurologist and internist between pills v. injections. They agreed to just try the supplements first, and then if that doesn't work, proceed to injections. My update is in November, so I want to request that my b12 is checked again to see if my levels are increasing or not.

Do any of you have a b12 deficiency? 
They said that if my b12 keeps dropping, my iron will start to go down, as well as other counts... I am wondering if this is the case since I am just feeling totally depleted.

As you all know, the feeling of "exhaustion" is not just "oh, I'm really tired"... it is full body and mind exhaustion. It is I cannot move or get up exhaustion. Lifting an arm is so draining and the thought of even getting up can seem awful!


---------------
Mailing Exchange
--------------
Anyways, I have received THREE people's postal addresses and I hope to receive more! I will plan on sending out the information at the end of this week :) PLEASE email me at ambivalentbliss(at)gmail(dot)com if you would love to be part of our mailing exchanges and receive/send fun mail! <3

-------
Questions
-------

Tips for surviving summer?
I try to avoid going outside at all costs.
I really have no tips and HATE the summer (don't we all!) 

My question
Do you suffer from b12 or do you have any tips to help fight excessive (annoying) exhaustion?


I hope everyone is well :)
xoxo
Erin

Friday, September 23, 2011

Finally Got My Results!

Hey guys! It's been like two weeks since I've posted, but here I am, although a little late. I finally got the results from my stress test and they just said that I'm having an excessive amount of PVC's, so my doctor wants to put me on a beta blocker. He's supposed to call back later today and when he does I'm pretty much going to beg for some fluids! I went to my GI doctor a few days ago and since I'm not throwing up he's not going to do any more testing (grrrr!) but he gave me prescriptions for Periactin and Zofran (both for nausea). I just think that he really doesn't understand where I'm coming from, I can deal with nausea, but I want to know why my dysphagia is so bad! I don't have much more to update, so I'll move onto the questions. There are quite a lot of them, so I just have them all in a list.

How are you going to celebrate awareness week? I wore blue all week, but didn't do anything else.


What is your favorite recipe, if you can post it? It would have to be either my mom's Ziti and Broccoli or her lasagna. I can get the recipes and post them on my blog later.

Is there a time in the day when you feel more nauseous or sick than others? Not really, I just feel really bad all the time.

Do you have an underlying condition that caused your Dysautonomia? Not that I know of, my doctors don’t really care about finding an underlying condition (and it’s so annoying!).

What is your favorite food to eat when you are sick, but know that you have to eat something? I usually just wouldn't eat, but if I’m being forced it’s usually chicken noodle soup or something like it.

How much water a day do you try to drink or what is your goal? My goal is 2 liters, but I can barely get in 8 oz.

Do you suffer from/have suffered from mental illnesses? Yes, I have OCD, Anxiety and depression. I was diagnosed 5 years ago by my psychiatrist and have been on meds for it since then.

Have any of you ever had to take iron supplements? If so, what kind and did it give you stomach issues? No, but I can’t even take salt pills without them messing up my stomach more.

What are your top 3 symptoms that impact on your life? I’d have to say GI (in general), orthostatic intolerance and chronic fatigue. But I have so many more!

Tips for surviving summer? Stay inside!

Do any of you get severe muscle weakness in your forearms? Yes, I get severe weakness in a lot of places, and it’s very sudden.

Have a good week everyone!
Bis zum nächstes Mal,



Wednesday, September 21, 2011

Homecoming attempt!

I have been doing a little better this week other than mild GI issues and fibro! I'm really looking forward to the fall and winter months because my fibro likes to flare up when it rains and during this season it rains everyday in Florida.

My small group leader from church told me I would regret it if I did not go to homecoming. So, I am going. I don't plan on staying the whole time because I am very limited on energy. Lets pray for a good heart day that day! On Saturday I am going dress shopping with my cousin Kayla. It is hard to make plans with me and last time we went to the mall it almost turned into an ER run because I was having such severe stomach pain.

For the one period I am at school I see everyone wearing their sports jerseys and talking about their next swim meet, volleyball game, softball game, etc. That has been really hard on me. I want to be active again, so much. I'm trying to find a different hobby to occupy my time other than sitting on the computer. On Sunday after church  I am taking a sewing class. :) I'm not the most crafty person, but if I practice I think I'll do okay. I'm going to be starting off with making PJ pants. I got the cutest fabric with kitties on it!


Michelle's Question:  What are your top 3 symptoms that impact your life?
Mine changes so often! I guess this week it would be fibro pain everywhere, stomach pain, and blacking out. If you asked me next week it would be completely different! Ha.

Erin's Question: Do any of you get severe muscle weakness in your forearms?
I rarely get weakness and if I do I would not classify it as severe.

Rhianne's Question: Tips for surviving summer?
I basically just stayed inside in the air conditioning because when I sat outside for a few minutes my heart would go all crazy! Could you maybe get a little window unit just for your room or something? That is the only thing I can really suggest. Good luck with surviving the hot months!

I am in a bit of a hurry so I do not have a question this week! I pray everyone is doing a bit better. :)

God bless!
-Cheyanne 

Tuesday, September 20, 2011

Happy B-day Hannah!


HAPPY HAPPY HAPPY birthday HANNAH! Actually Hannah's b-day and mine are close together which is pretty sweet. I'll be turning 17 this Saturday... I'm not really looking forward to it, but God reminded me that the little things I'm missing out on don't even begin to compare to eternity in heaven, and Dysautonomia can't take that from me. My birthday still doesn't seem important, but at least I'm dreading it any more!

Lets see... other than a few doctors appointments not much has happened, and I'm still not feeling well. My joints are acting up really bad too. I really don't know how I'm going to finish my senior project or get through my other schoolwork on time.

I'm too out of it to remember questions, so maybe I will catch up on those later.
 - Logan

Jesus loves you!

HAPPY BIRTHDAY HANNAH!

Here comes the sun

Okay guys, it is September and the weather has been hot. Today it was 31 (87) degrees. It is only Spring here and I have a feeling that we are going to have a hot summer. I wish I was in America so I could see snow instead of sweating like a pig. We haven't go air-conditioning so it is going to be real hot. So I am going to spend every moment I can at the beach, or somewhere else that is cool.

So my week I will get onto that:

I had exams on Tuesday and I got sick in my Maths exam but I managed to do my civics and in the history section I came fourth in the class, and I was throwing up during it and all that nonsense. I would get nauseaus from anxiety I guess so I would eat a gingernut and choke and throw up.

I guess I just didn't learn.

The school principal was in the office next to me, I think he enjoyed listening to me.

But fourth in the class and I know I did well in Geography too because the teacher told me.

The end of last week, I can't remember what I did. Oh I went out with friends on Friday night to see the smurf movie and that was good.

Saturday wasn't that good a day but Sunday was and I went to the beach. Monday not another good day but today was alright.

I am so excited because I have balance treatment soon. Like on Thursday and then a genelogy and neuropsychology appointment on the Friday and a potsy picnic on the Saturday.

Now I think I should just move onto the questions:

Logan: I am sorry you are so sick girly! You need the new feeding tubes soon.

Cheyanne: you asked about iron pills? I have never taken them so I am not much help unfortunately.

Michelle K: Welcome to the dysautonomiacs! Aussie aussie aussie oi oi oi! Hahaha lets infect this blog with awesome australianess. I am glad you posted  but you're question is so hard to answer. Top three symptoms. They vary all the time. The ones that bug me the most would be:
  • dizziness
  • blacking out
  • myclonic jerks
Erin: First of all, I want to say the American Health care system is bonkers and come to Australia. Yes, we can have private health insurance which allows us to go to private hospital and get individual rooms I think but I am a public patient. And we don't pay for hospital! :)
And your question was do you get severe muscle weakness in your fourams?
YES! Sometimes I feel like typing on my iPod is too much to do.


So I am going to ask a question.
1. Do you have any tips for surviving summer?

Sunday, September 18, 2011

There's a Code for That

Health Codes are a changing :/

I'm sure most of you don't read my personal blog over at My life as erinj0, but I just recently blogged about something that I think you might all be interested in - as it applies to everyone receiving health care services (in the United States that is).

*********
As of right now, there are approximately 18,000 health codes that medical professionals use to categorize "what is wrong with you" or "what you are having done/your diagnosis" to the insurance companies.

In return, the insurance company will then look at that particular "code" which represents your "problem" and they are the ones who ultimately decide whether or not they will cover your costs.

Fair? not so much.
Insurance companies are not medical professionals. They do not understand the details and ramifications that some health issues can have on a persons body. You are just a number to them. Not a person.

Do you currently think it is hard to get health coverage?
JUST WAIT!
It's going to get even more difficult.

In October of 2013, the codes will increase from 
18,000 to over 140,000.

For more information, you can read my personal blog post here.

----------------------------------------------------

ALSO! 
If you would like to participate in the exchange of addresses and send "fun mail" to each other, please send me your mailing address to ambivalentbliss(at)gmail(dot)com . I have done this with a couple other POTSies and it is such a fun thing to do! Who doesn't LOVE to get mail?!


Questions

Do you suffer from a mental illness? I do not suffer from a mental illness. Excuse this rant that is about to happen (I think a lot of doctors can be easy to throw out a diagnosis of depression to certain POTS patients for the sole fact that we are young, female, and nothing can honestly be THAT wrong with us. Our blood work is usually fairly normal and he cannot physically see anything wrong. I'm sorry, I have personally experienced this while trying to find a diagnosis and it was years and years of frustration. I have built up hatred for certain doctors...) 
While I do acknowledge that a chronic health problem may lead to days of gloom and doom, it does not mean that every has a mental issue. 
I do believe that some people may truly have a mental instability and can benefit from doctors advice. I am just speaking through my personal experience! I do not mean to offend anyone!

Have you ever had to take Iron supplements? YES! They are awful. I had to take multiple prescription iron supplements a day for a long time in college. They make you SO incredibly sick. I felt like I was at my worst when I was on those pills (I'm sorry to be a debbie downer!) I cringe at the thought of having to take those again.

What are the top three symptoms that impact your life?
{1} Fatigue (my b12 levels keep dropping...I am already deficient) and this is by far the WORST. I cannot do things for very long and I always have to sit in the classroom. By the time I get home, I am utterly exhausted - I go to bed around 8:30pm and just lay there all night until I can fall asleep. My muscles are weak and they feel as if I can't even move them.
{2} Breathing Issues  While I don't see that many POTS patients I know have an extreme level of breathing issues like I do, this is one of my worst symptoms as well. Little things like dishes, cleaning the cat box, or any simple household things leave me breathless. Even laying in bed lately can leave me almost "panting". Note: I have always had trouble breathing and I am still puzzling doctors. I have 2 inhalers (especially because I am on a beta blocker which is awful for your lungs!)

{3} Light-Headed/Migraines These two are a tie. Obviously, when you get really light-headed, you are loosing blood supply to the brain, which in return sends extreme headaches or even migraines after awhile. I have tried almost all migraine medicines I can think of, with no prevail. I always feel light headed and get nasty headaches (and often migraines, too) every week!
My Question - Do any of you get severe muscle weakness in your forearms? This is something I have tried to understand for so long. It feels as if I just lifted weights all day long and my muscles are used up. It can be so hard for me to even lift things or use my arms at times and NOTHING makes them better... ugh


Anyways... 
I just wanted to say HAPPY EARLY BIRTHDAY HANNAH :) : ) :)
You are such a sweet, caring, and wonderful lady whom I have come to admire so much! I know that I can always count on you as a friend if I need anything, and for that I am extremely grateful and blessed! I hope you have a symptom-free, happy, joyous, fun-filled birthday!! 

To all the rest of you ladies, take care!
xoxo
-Erin

Wednesday, September 14, 2011

Uh, how many people does it take to put on a pair of compression stockings?

HA! My compression stockings came in the mail on Monday. They are so hard to put on. My mom had to help me and after we finally got them on she was sweating!!

There hasn't been much going on with me lately. Last night I had a really bad "episode" I guess that's what you could call it. I got really sick to my stomach and kept dry heaving. Afterwards I got tremors in my arms and legs. This morning the same thing happened, minus the tremors. Food hates me. We think maybe my gastroparesis is coming back. I just got on iron supplements. Lets hope they work so I do not have to go see a hematologist.

Saturday I am going dress shopping for homecoming. I'm super excited. Although I do not really know how I am going to manage at homecoming. It is worth a try though. :)

Logei: I hope you get to feeling better soon!

Rhianne's Question: Do any of you suffer/have suffered from mental illnesses as part of being chronically ill?
I have had OCD since I was about 5. I am almost sure I have an anxiety disorder as well...although I have never been officially diagnosed with one. It was really bad when I was younger. Since I have been diagnosed with POTS it has gotten worse. My mom is making me go see a psychologist or some kind of counselor now. :|

My Question: Have any of you ever had to take iron supplements? If so, what kind and did it give you stomach issues?


God Bless!
-Cheyanne

Monday, September 12, 2011

Rhianne is posting :P

Hey dysautonomiacs,
So I thought I would kick Mel of the blog today (sorry Mel :p) and I thought I would talk about what's up with me.

Basically I have been in hospital for dysphagia and over the last few days I have had one too many conversations about the idea of accepting a mental health diagnosis for the root of these problems.

I don't know why but it sort of seems tabooed in this community to talk about having mental illness problems from having pots and the various types of autonomic dysfunction.

We all though, accept that our illnesses affect the way we think and process information (brainfog anyone) but we are yet to realise and accept that it may also a) be the root of some of our problems and b) be caused by having autonomic dysfunction.

The autonomic nervous system does control the systematic nervous system and that controls emotions and the way we deal with them. Our bodies are always in the flight or fight response.

The way that my body deals with this is through the conversions. My first conversions symptom was myclonic jerks, then when I managed to stop them my body turned the symptoms in to dysphagia.

Anyway, that is the story. Last week I was in the hospital having lots of tests which thank god, came back normal.

This leads me on to my question: do any of you suffer from/have suffered from mental illnesses as part of being chronically ill?

I know it is a tough question and feel free not to answer it.

I am going to answer the questions before I have a lay down. Today has been rough, two exams today and the second one I quit half way through due to pots. Plus I fainted in front of all my friends, gee embarassing much?
Logei asked: favourite food recipe?
Are you asking me to pick just one! Hahahaha. We don't actually cook with recipes in my house but my favourite food would probably be rissotto.
Erin: Is there are time of the day where you feel more sick then others?
Probably the mornings, I swear when I wake up I always feel like pure crap.

Sunday, September 11, 2011

A bump in the road

I want to first apologize, as I haven't posted in two weeks!
I kept forgetting, and last week was the holiday weekend, so I was with the family :)
I have been doing so well the last two months and all of a sudden, I am just not feeling good anymore :/

This Friday I actually had my blood test for VEDS or EDS Type IV (Vascular Type)
I saw the geneticist about two and a half months ago and it took that long for our insurance company to approve the $2,500 blood test! Just to test for this one mutation costs that much! I can't imagine what's going to happen once I am off my moms insurance in the next year...

The test will take 1-2 months...
I hate waiting, that is the worst part!
Chances are, I don't have it - but the geneticist wanted to rule it out because of family history and symptoms I had/have and that my mom has had. I just have that funny feeling in the pit of stomach - I never usually worry about tests, but this is one that really gets me a tad nervous.

I also am very curious as to knew information that I have come across through the Cleveland Clinic.
I was born with a bicuspid aortic valve and my esophagus was never fully developed. 
Upon many doctors visits throughout my life, I have never been able breathe, despite being in great shape and was never given any answers - they always just said "oh it's not your heart" your fine. 
Obviously, I wasn't - My face turned purple and blue and I couldn't breathe (plus I sound really funny when I breathe sometimes) 

Well, I have just learned that BAV(D) Bicuspid Aortic Valve Disease can happen if you have a connective tissue disorder, like EDS (which I definitely have!) and approximately 70% of people with EDS have a form of Dysautonomia (POTS). 

The frustrating thing for me (and probably others out there) is that POTS is thought of as a secondary condition, that happens due to something else that is not functioning properly in the body or another condition! I feel frustrated when we are just given medicinal treatments and a "eh" approach to POTS - Shouldn't they be looking into what is the contributing condition that is making our bodies go haywire?

**Sorry for the mini rant**

Anyways, I haven't had an echo in about 3 years and I am supposed to get one every 2-3 for my BAV, so the next time I go, I want to bring up all this information I have found to my doctor! 
If any of you are curious, here is the website. 
----------------------------------------

Question Time
  • How much water a day do you try to drink or what is your goal?
    • I try and drink about 4 water bottles a day, however I know that I am supposed to drink more. I also always make sure that at least half of that is electrolyte filled water, otherwise it won't do any good at all
  • What is your favorite food to eat when you are sick, but know that you have to eat something?
    • Well, it's not really my favorite, but I usually turn to banana's as they are the easiest on my stomach. As for my all time favorite food: Ice cream and potatoes :) I agree with you Hannah, what is with the POTS and Potatoes? lol
  • Do you have an underlying condition that caused your Dysautonomia? 
    • I finally got diagnosed with EDS this year - they believe that EDS is the cause of many Dysautonomia's. Interestingly enough though, it was after my wisdom teeth removal that everything went haywire and I became bedridden for many many months. **I have extremely bad dental problems, as my my mom** We can't get numb with their medicines, our gums are extremely sensitive, and we don't heal quickly, and have a lot of other dental issues : / ... 
  •  Do you have a pet?
    • Yes, I have two cats: Chunk & Harley :)










  • What do you do to "escape" your illness?
    • I crank my music (or barely play it, ha) and try to live through the music to drown out all my other thoughts/symptoms. Music is literally my lifeline.
  • What are you going to do for awareness week?
    • I honestly have no idea - I know, that's bad -- but I'm not sure!
  • What is your favorite recipe?
photo credit

    • Fruit Pizza!!! It is my all time favorite dish in the world. Well, almost. But I thoroughly enjoy it :)
    • Crust
    • (or any kind of sugar cookie you like to make)
          • 3/4 cup sugar
      • 1/2 cup shortening
      • 1 large egg
      • 1 tsp. vanilla
      • 1 tsp. salt
      • 1 tsp baking soda
      • 2 3/4 cup flour
      • 1/2 cup milk
    • Topping
      • 1 (8 oz.) package cream cheese
      • 1 tsp. vanilla
      • 1/2 cup powdered sugar
My question: Is there a time in the day when you feel more nauseous or sick than others? I used to always feel sick in the mornings, but now the nighttime is really getting to me...

It seems that we are all not feeling the greatest
Sending you all lots of love and prayers!
<3 Erin

Friday, September 9, 2011

Thank You, Cheyanne for Reminding Me to Post!

So, I've been forgetting again to post. I remember like the day after, sorry guys, haha.

Today, was bad symptom wise... I had a cardiologist appointment and got sick before with my GI, but went anyway thinking it was like my normal POTS GI issues and that I would just fight through it...And cardio appointments really aren't ones to skip! But, I ended up holding a trash can feeling like I was going to vomit and visiting the restroom a lot. My cardiologist came in and with his awesome Indian accent says "I'm sorry to see you in this condition," and then says to me after I sat there "Lay down Hannah and sip some water," so I did. It helped a little bit. I think I have a virus, but I don't really know. Even though he's my Cardiologist, it felt pleasantly bizarre to have someone acknowledge that my sitting up may be contributing to how horrible I feel.

I found out today that the medication I was prescribed when I was in the hospital with violent tremors back in April? is causing my higher side of normal prolonged QT's to be a little more prolonged. So, I have to go off that and switch to something else. I had a gut feeling my medicine was causing problems because out of nowhere I started getting my PVC's again and one day my resting pulse was 60 and the next it was 90's- 99 (and the medication is on the list of ones to avoid for individuals with long QT). My BP also has been crazy, either low, high, or good. But, God is good, I prayed that if there was an issue that it'd show up, and it did <3.

I was suppose to have a Urology appointment right after my Cardiology appointment but I was just too sick. Right now, I'm trying to figure out how to cure my lightheadedness without getting sicker on my tummy. All I've eaten today was a banana (before my stomach really started showing itself), a few fries and some chips. I'm trying to get some water in me too because I am definitely dehydrated. My cardiologist told me to try for 2-1/2 to 3 liters of fluid instead of the 2 I've been shooting for. I'm hoping the increase helps! :)

Okay, on to the questions,

Logei: That sounds so horrible about throwing up your tube and how you've had to replace it yourself, I'm sorry you are going through that. I hope however, this makes some leadway for some serious improvement with your issues <3. Also, I hope you get your IV fluids, I know you really need them! Your raw ice-cream sounds DELICIOUS!You wanted us to post our  favorite recipe and I think this is probably one of my more favorite recipes:

Skillet Chicken Stew
(ingredients are roughly chopped)


Chop one chicken breast and season with garlic powder, salt and rosemary to taste. Put two tablespoons of olive oil in a skillet over high heat, add chicken and reduce to medium heat, brown on both sides.


Add two chopped carrots, 1/2 cup of green beans, one chopped zucchini, one chopped sweet potato, one small chopped tomato and three tbsp. of rice flour.  Sautee for ten minutes or until vegetables are tender.


Add two cups chicken broth, cover and increase heat to high until it reaches a boil, then reduce heat to medium for approximately seven minutes. add three to four more tbsp. of rice flour or until thick, and enjoy! 
(Sorry to our none U.S. readers/dysautonomiacs, I don't know how to convert the measurements to what you use)

Also, I know we talked about it, but I get those autonomic overload things, too!

Francesca: I like your idea with the blue shirts and pots on our heads, I think we should post a pic on here of us like that! What do you guys think?! Your question was what are we going to do for awareness week, and I'm not entirely sure yet, hopefully I can travel up to your end and do the bake sale with you :).


Cheyanne: I am sorry to hear that you are severely anemic! I have struggled with anemia too, and I know blackstrap molasses is suppose to help, I have tried it a couple times but it tastes disgusting lol. And I know we chatted about this but wanted to post this for the sake of our readers as well, what your describing with your throat sounds like what I went through about a year? (and a good bit since) ago. They said it was a muscle spasm and I used hot tea,( probably would have been better to just use warm water with honey since tea makes my acid reflux worse, which makes my throat worse), the heating pad, and muscle rub on my throat. Not sure if muscle rub on your neck is bad or not but I was desperate. Now that I've had the PH probe done, I think my acid reflux highly contributed to it, if not caused it. Interestingly enough though, they have found calcification somewhere in my throat/neck but don't feel it's caused those issues. Your question was what is our favorite food to eat when we are sick but know we have to eat something, and mine is probably fries from mcDonalds lol. What is it with POTSies and potatoes? We seem to LOVE potatoes!

Alright ladies, I sure hope this made sense, I am like...Not feeling so well right now, and please excuse me if I missed anybody's questions. Miranda, I sure hope things look up for you and that your testing sheds some light on what you are dealing with and hopefully get some relief! Rhianne, I know you are not doing well and I really feel for you right now girl. Keep on keeping on! Mel, I hope things start getting better for you too! Your such a sweet girl! And to all the other ladies, I am not sure how  you all are doing, but I hope that means you are GOOD!

~Hannah

Stressful Stress Test

So I had my stress test on Wednesday and barely lasted 5 minutes on the treadmill. I was still exhausted from that yesterday, plus only getting 3 hours of sleep from doing homework, so that's why I'm 8 hours late. My laptop has a virus so I'll post about my stress test and crappy week when I can.

Wednesday, September 7, 2011

I'm going to make this a short post this time.

I've had a pretty bad fibro week. Just about half of my class is sick with some type of virus. That really freaks me out because have a fear of getting sick on top of my POTS. So my anxiety/OCD have been terrible. My doctor said that I am severely anemic. She is going to make an attempt to treat me. Hopefully when it goes up it will alleviate some of my symptoms that anemia causes. :)

Francessca's Question: How are you going to celebrate awareness week?I honestly have no clue.

 Logei's Question: What is your favorite recipe, if you can post it?
I'm sorry, I don't really have a favorite recipe. I don't cook much.

I hope you feel better! Stomach problems are the worst.

Rhianne: I pray you get out of the hospital soon and that you are doing okay!


God bless! :)

-Cheyanne

Tuesday, September 6, 2011

Yes, Healthy Ice Cream Exists!

Hey all, my stomach and I are really not getting along.  The tube definitely helps my vomiting, but I can't handle a high enough rate to get in enough feeds. Its like my intestines can't handle all the fluid and I get sick and bloated.
Oh and my primary doctor is still refusing to give me IV fluids even though she now has recommendations from two different doctors.  I'm so frustrated, because she could get me fluids with a phone call, that's all it takes, and I would feel so much better! I'm so dehydrated right now!

So this random, but I was experimenting with healthy recipes and I made the RICHEST raw chocolate ice cream today. I thought I would share the recipe!

 2 cups of chopped raw walnuts,
2 large frozen overripe bananas (sliced),
 1/4 cup raw chocolate powder,
1/4 cup raw honey/agave
 Directions, grind up walnuts in a food processor until fine, then add frozen bananas, chocolate powder, and honey. Process until smooth, then put in a container in the freezer until it reaches the thickness you like.
 It will come out fine with normal ingredients too, raw chocolate powder and such can be hard to find!



Questions.. "what is your favorite food to eat when you don't feel good."  I love food to much to pick a favorite. Um, since I can't eat anyway..... I have no idea.

My question, what is your favorite recipe? If you can, post it!


Rhianne, I hope you are ok, and I forgot to thank you last week for posting pics of your pets for me on your personal blog!

Miranda.... you are in my prayers.

Everyone else, have a good week! 
- Logan

Am i getting better yet?

heyyyyy guyyyss !
I've been so out of it cause im trying to get off my fludrocortisone, so less blood flow and liquids ! I have been trying to get off of it without my doctors knowledge (yeah i know bad) but he dosen't lissten ! Fludrocortisone is seriously the devil i swear. It sucks all the potassium out of you and gives you such anxiety....oh and acne. Anyways i think this diets been helping somewhat. I'm starting to feel like how i did last summer, a little more energy instead of laying in bed like i was the past couple month. This is going to be another short post from being so out of it.
hope everyones doing better !
p.s everyone say a prayer for Rhianne, she's not doing so good and in the hospital again.

Saturday, September 3, 2011

Super Saturday

I Nearly forgot to post.Okay anyways Dysautonomia week is like two weeks away but I'm super determined to do something for it like organizing a bake sale to raise money
so i go to walmart and ask them if we can have a bake sale there. there like talk to manager
so we do then there like it has to be in writing typed. so we give it to them then we call up later and there like  usually you have to call months in advance but maybe we will luck out
they said to call back on Tuesday and they will give us an answer. Ugh don't they see that this is actually a worthy cause ? its not like were gonna sell stuff for profit 
its going to research for dysautonomia. well if we get a yes it will be held in Maryland on  September 17th hopefully at carol island walmart .Even if we can't have it there we will find somewhere else
plus i already bought cake mix so im not backing down ! I intend to be stubborn about this its time we bring some awareness to pots and dysautonomia I also thought of an Idea we could all wear blue shirts and post it as are profile pic during awareness week maybe even put pots on are heads something cool
people don't understand because we don't let them we don't explain  because usually people don't have time to listen but this time is gonna be ours dysautonomia has a voice and were it
omg that sounded super deep lol  okay on to questions

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?

I probably should drink more but i usually only drink a half a Gatorade.
which is pretty bad  because your supposed to like drink a liter or something like that



 
 Tana's  :What is your favorite food to eat when you are feeling sick, but know you have to eat something?
 
First i have to say welcome back Tana I was wondering where you went.
I would have to say I like  the little off brand goldfish crackers I think there called whales lol
 
apparently I'm the first September post so happy September :)
 
 I guess my question is how are you gonna celebrate awareness week ?
as i mentioned earlier I'm planning on bake sale