Wednesday, November 30, 2011

ER run last night.

After Thanksgiving I have had this annoying pain in my chest. I dismissed it and thought it was just indigestion. I'm not one to really get indigestion though. Well days passed and it was still there. My mom gave me gas-x a few times and that didn't do a thing. A couple more days passed and it progressively got worse. Last night I couldn't take it anymore and went to the ER. They ruled out my heart and tests showed that my lungs are hyperinflated and I'm having some sort of spasm. After they gave me an inhaler the pain immediately went away, but since it is a spasm it came back a little while later. I am in a bit of a predicament because the inhaler they have me using does not agree with me, but it is the only thing that takes the pain away. After I use it my heart goes crazy, I get super dizzy and start seeing things, jittery, etc. The pain is from my sternum all the way through my chest to my back. It hurts so bad it is making me nauseous. I didn't get home until 12:00 last night and we are all exhausted. I didn't go to my one class today.

I was put on Zoloft and it made my stomach stop working. My mom researched it and it can change the motility of the stomach. I have been back on azithromycin to try to get it to go away like last time. It seems to be helping a little bit. I don't have much of an appetite. I've lost a couple pounds. We also found out that the Zoloft was what was making my eyes all dilated. The day after I started it my bladder was all wacked out too! I kept going to the restroom every 5 minutes.

My Question: Have any of you ever had that chest pain that I am describing?

Hannah's Question: What is your favorite Christmas song?
I don't really have a favorite.

I hope you feel better! It is good to know I am not crazy and that someone else has had that symptom. :)

Michelle R's Question: What do you want for Christmas this year?
My iPod just broke, so a new iPod. :)

Erin's Question: Do any of you sew?
I don't have any tips for finding a good machine. I just started sewing, so I don't know too much about it. For those of you who gave your addresses out be expecting something in the mail. I've been sewing y'all Christmas presents!

Thank you so much! I have not been sick for all that long and it is just surprising that nearly every single "friend" has left me.

Rhianne's Question: Do you guys have brothers and sisters?
Yes, I do. I have 3 brothers. 1 is a step brother and the other 2 don't live with me, but they are half brothers.

I hope you guys had a good Thanksgiving!
God bless

Tuesday, November 29, 2011

Another video

Hey what's up peeps? here is a video from me. I look so ditzy in the picture youtube picked.

Sunday, November 27, 2011

...and the long weekend is over

What a wonderful Thanksgiving weekend :) 
I am SO incredibly thankful to have gotten the chance to get to know each and every one of you!!

It was so nice to have a weekend full of family and love.
I didn't dare to brave the crazies for black friday.

Instead - I laid around in my pajamas, drinking some hot cocoa, watching t.v. and shopping ONLINE!
I am so thankful for the internet!


How do you celebrate Christmas? 
-Christmas Eve is spent all night with my boy and his very large family :) His family is 100% percent Mexican and they make all home-aide dishes! Their specialty is tamales... a week prior to Christmas, the whole family gets together and hand makes everything! Their motto: If you want to eat or take some to other friends/family, you must help! Many hands make light work.
-Christmas Day is spent with my family! We have casual food, everyone brings a dish and we play games and hangout all day! It's really nice :)

I hope all is well Rhianne! Take care :)

I didn't see a post, so I hope you are doing okay :)

Hi girl. Sorry you are going through a difficult time.
The issue of friends and a chronic illness is SO hard.
Truthfully, I have been sick since I was 7 and this has been a huge issue that I constantly deal with. 
I have learned that truthfully, it will never get easier. It's hard when sometimes you can feel totally fine one minute and the next minute feel like utter hell. This quick change is hard for some people to really understand (including family!) - 
I pray that things start to get better for you :) 
Let me know if there is anything I can do for you lady!!!

  I hope you had a wonderful Thanksgiving & keep staying positive :)

You've been through so much lately! I hope things with your stomach improve :/
You have such an optimistic, wonderful contagious personality!
Keep that up - eventually things will be uphill :)
Are any of you hard to stick for IV's or blood draws? 
Oh my goodness, yes. I went through 14 IV's in a two week hospital stay. Not only is it extremely difficult to get the IV started, my veins infiltrate and give out easily!

Michelle R 
What do you want for Christmas this year? 
Hopefully your appointment went well :) 
I actually want a sewing machine & a new pair of TOMS!

Let me know how your sleep study goes! I hope you had a fabulous Thanksgiving girl :) 
What's your favorite Christmas song?

Breath of Heaven by: Amy Grant
This was my favorite song from grade school that we sung at our Christmas Concert.
It has been close to my heart ever since

My Question
Do any of you sew? If so do you have any tips for picking out a good (but relatively cheap) machine?

Take care ladies!!

Thursday, November 24, 2011

Early Post

Hey ladies!
Sorry Miranda to be posting on your night but I thought I'd forget tomorrow!
I hope you all are doing well!
This week has been so... Different symptom wise! I was in a car for 6 hours on Saturday to go see my new nephew, Jude (YAY!!!!!), and then 6 hours back, and I did pretty great! Then later in the week I could barely stand. Then yesterday I got a bit better, and today, I did great! I was energetic and just...well...great! Then I got sick before thanksgiving dinner at my uncles and have been in my recliner haha.

We increased my Lexapro to 20 mg, and I do notice a bit of a difference, I'm still quite sick but I feel like I'm a bit more stable. However, the improvements so far are not nearly as good as with the Prozac, but I've only been on 20mg for close to a week...So I gotta give it some time!
My heart rate lately has been a lot higher than usual, getting into the 140's just from walking around. However, I'm hoping to see improvement since we just upped my dosage.

On to the questions :)

Rhianne: (For the readers, she made a video!) How do you celebrate Christmas? Well, before Christmas we celebrate Hannukah! We have some Hebrew blood running through our veins!  But we do not celebrate it in the true traditional way, we have our own little spin on it. Then as far as Christmas goes, for a number of days leading up to it we usually open stockings, but now that we're all old (lol) I'm not sure if we're still going to do that. We do some of the traditional things like cookie making and decorating, decorating the tree as a family, etc. And we go to my uncles on Christmas Eve, and I like to sleep by the tree. We open gifts, my Dad makes us some breakfast and we just hang out after that :).

I don't remember everything you said in your video but I hope you are doing okay :).

Francesca: Feel better! I'm sorry you are doing so bad!

Cheyanne: I wish you the best with figuring out everything with the dual enrollment. I'm sorry things aren't going so well with your friends. I completely understand, I've been there and still am there. At first I was so upset because I felt like since my friends didn't understand, so they probably thought I was ditching them all the time. Then I got angry because I felt like they should understand, and now, I am definitely a work in progress but I am coming to a place where I am able to begin the healing process and let go of the hurt and the ill and poisonous feelings and realize that it is okay if they don't understand. It's okay if they cannot listen to me talk about my health issues, however, that is a huge part of my life- and I have nothing to feel guilty about, so if they are unable to accept that- it hurts, but it's okay. It's okay for them to move on and I don't have to feel like I ruined the friendship because I got sick. I think forgiveness is BIG in situations like this, for the sake of friendships that can be renewed, and for the sake of yourself.

Your question, Do you ever get a feeling like a limb is vibrating? Don't worry, you're not crazy haha, YES, I have. Even my whole body at times! I haven't found anything yet to combat it, just distraction and fluids. I think it is a form of tremors? Maybe internal tremors.

Miranda: I'm glad you had a good birthday week :). I'm disappointed still, to hear about everything with your Doctors, I'm hoping things get better for you soon. Hang in there, okay? :).

Your question, Are your hands extremely dry or wrinky? Not now, but my hands used to get scaly and crack open and blend and they would hurt so bad. They still get dry and wrinkly at times but don't really crack. I use a lot of oil though (almond and olive) so that may be why!

Erin: Girl, I hope things are going well with school and everything! I have not heard of that drug that your Doctor is thinking of putting you on. I hope you guys figure things out with that! =))

Your question, Has anyone been to a sleep specialist or had a sleep study before? The only ones I've had, have been the ones to check for seizures. In December though, I get an overnight (at least I think it's one night!) hospital stay for a sleep study because of my insomnia.

Logan: Girl, I am praying for you and hoping that things improve. I feel for you and am staying hopeful about your tummy troubles. Keep hanging in there girl, it's gonna be okay! <3

Your question, Are any of you hard to stick for IV's or blood draws? Yes! I've gotten fished in looking for veins, I've had to have my hands warmed up to get any blood from them, and yeah! Luckily I have not had to have my feet stuck into yet!

Michelle R: (For the readers, she made a video!) I know you are nervous about your appointment, but try to relax and know it'll be okay :) I'm hopeful! I'll say a prayer, too :). Your question was, What do you want for Christmas this year? I am talking to my parents about an inexpensive exercise bike, or maybe some yarn/fabric, or some Bibles :).

My Question: What's your favorite Christmas song? Post it if you can!  (To the subs, feel free to pop your head in here and post yours too!)
I have a few but this is one of my favorites:

Stay safe tomorrow on Black Friday to anyone whose going out shopping!
Happy Thanksgiving! I'm thankful for all of you guys!!! Readers too :)


Happy Thanksgiving!

I hope everyone had a good Thanksgiving today! Mine was alright, but I ate more than I'm used to (peer pressure!!) and am feeling quite sick. My eating schedule was thrown off too, from my family coming over and eating later. I'm also not used to being up and about for so long without resting.

Recently I've started to not like my cardiologist much. For one, he refuses to let me get fluids, then he won't put me on a beta blocker, even though my symptoms are really bad. He just thinks that I'm deconditioned and I need to drink more... Which leads me to my gastroenterologist, who won't listen to me either about eating/drinking.

My computer is being weird, so please forgive the short post! I'll just finish with the questions.

Are any of you hard to stick for IV's or blood draws? I have small veins (and being dehydrated all the time doesn't help), so it usually takes a good phlebotomist to get it, but it's never taken more than 2 times at once.

Has anyone been to a sleep specialist or had a sleep study before? No, but I have a pulmonologist (who is quite incompetent).

Have a good rest of the week!

Wednesday, November 23, 2011

short post.

My eyes have been super dilated for no reason ever since I woke up this morning. My mom said I look like a vampire. Ha! I have been having a fantastic heart day today so I went to the mall. Now I am at home with a heating pad wrapped around my knee because it hurts so badly.

I have been pretty bummed this whole week because non of my "friends" talk to me anymore. The ones I thought were going to actually stick by me have chosen other people. That is fine I guess. I understand.

Logan's Question: Are you hard to stick for IV's?
No not really.

I can totally sympathize with the doctors thinking it is all in your head. When I went to the Mayo Clinic the doctor told me I had an eating disorder. That was back when I was 90 pounds and they were about to tube feed me. I'm at 101 now. Once a certain food made me super sick I wouldn't eat it anymore and just about everything did and I guess that is why they thought that.

Erin's Question: Have you ever had a sleep study done before?
Nope! One test I have not had before. :) hahaha.

Miranda's Question: Do you get dry, wrinkly hands?
I do not.

I hope everyone has a great Thanksgiving tomorrow!!! :)

God bless!

Monday, November 21, 2011

Oops. Late Post :/

Hiii girls :) 
I just had my four month update with my autonomic neurologist last Thursday!
(Blood test results are back until later today)

He isn't changing any of my meds as of "right now" but I am getting referred to a Sleep Specialist and a Pulmonologist.

Why a sleep specialist?
Well he wants to put me on modafinil.
Has anyone heard of that drug? It is to help me stay alert and awake.
I am tired all the time!!!!!
He thinks I actually have narcolepsy or possibly sleep apnea.

More about that intersting story later! 
I have to go to school :)

Why a pulmonologist? breathing is worse. 
I am now wheezing, even when stationary.
I've actually been to three in my life thus far. They all have different opinions...
This woman is supposed to be the best, so lets hope :)

 Cheyanne: What exercises do you do? I know, I know, I should exercise. I try to just walk as much as I can, but as for a specific exercise plan...I have none :/
Hannah: What headache remedy do you find most effective? I really don't like taking OTC medicine if I can avoid it. I try peppermint tea at first, heat packs, and pressure point massages. I also like to make sure the room is completely dark and noise-free. If all fails and it's completely uncontrollable, I will take some medicine

Miranda: Are your hands extremely dry and wrinkly? My hands gets extremely dry! I have a lot of creases in my hands...they aren't quite wrinkles, but more like deep lines?
(okay, that probably made absolutely no sense. its early, excuse my writing!)

My Question: Has anyone been to a sleep specialist or had a sleep study before? 

I hope you all are have "okay" weeks! 
This cold weather is sure a killer. 
We never can win...
Heat is a killer.
Cold is a killer.
Stupid POTS.


Thursday, November 17, 2011

Quick Post!

Hey guys! I'm sorry that I didn't post last week, I was just so busy and absolutely forgot! This week is my birthday week and I already got a KindleFire, a few books, a locket and a dress. I couldn't really eat my cake, since I am having some pretty bad stomach pains and eating sweets makes them worse. I'm so excited for tomorrow, my dad is taking me to a museum that I've really been wanting to go to and I think we're going to get me a wheelchair. I also got to go sailing last weekend, which was really fun; although I had a tendency to hit buoys.

I've been having a lot of trouble with my hips hurting really bad and I'm not sure what that's from. I guess I'll mention that when I go to my primary doctor in a few weeks for spirometry testing, because I'm also having frequent shortness of breath. My primary doctor spoke to my cardiologist and he is still against putting me on a beta blocker (I'm still not on any POTS medication), so I guess I'll have to wait until I get to see doctor Grubb for some real treatment. I'm quite tired, so I'll move onto the questions.

Erin: Do you get pinky tremors? Do you have tremors on one side? My hands, in general, shake a lot, but usually on both sides.

Cheyanne: What exercises do you do, if any, and are they easy on your joints? Do your limbs feel like they vibrate? I don't exercise, mainly because I can't and also because I really don't want to, but during the summer I like to swim. My limbs don't really vibrate, but sometimes my whole body will move if I'm laying still during a particularly hard PVC.

Hannah: What headache remedy do you find most effective for you? I usually take 800 mg of ibuprofen and take a nap.

My Question: Are your hands extremely dry and wrinkly? Mine crack open on my knuckles and my palms look like this:

Until next time, 

Wednesday, November 16, 2011

Considering dual enrollment?

I just do not know if it is too much, ya know? My guidance counselor mentioned it this morning when I went to ask her a question about an online class I wanted to take. I know I will regret it if I don't try it, but then again I don't want to set myself up to fail by taking on too much either.

My appointment to see a geneticist is in February. I do not want to wait that long. I am on a cancellation list, so hopefully I can get in sooner!

Other than that nothing has really been going on. I am going to see Breaking Dawn on Friday. That movie may make me sick because of my light sensitivity stuff. If a movie has a dark setting then usually I handle it, but if it is a light setting and has a bunch of action scenes then I cannot tolerate it and end up closing my eyes for the whole thing. Oh and on next Wednesday I am going shopping with a friend. :) I am excited for that.

Francessca: I am sorry you are in so much pain! Feel better.

Logan: I'm glad you got to go to church. :) I pray it goes a bit better next time!

Hannah's Question: What headache remedy do you find most effective for you?
I usually use Excedrin and sometimes it works and other times it does not. It depends on the cause of the headache if it will work or not. When I have a headache from light sensitivity then the Excedrin will not work, but if not then it does. Unfortunately for me the majority of my headaches are from light. I hope you find some relief from your headaches and feel better.

My Question: Do you ever get a feeling like a limb is vibrating?
Don't think I am crazy because I know that sounds really weird, but it has been happening frequently lately. :)

God bless

Saturday, November 12, 2011


Hey everyone
I don't really know what to write about most of you I have good days and bad
It's been a rough week for me pain wise I really hate E.D.S with passion it makes you wanna do anything to escape the pain I haven't been to school in almost 2 weeks.In and out of the ER. I'm gonna try to go back on Monday hopefully every thing will work out.I'm Postpone the bake sale till later in the spring ,I don't feel very well so were going to wait till spring.I don't really know what else to say so I'm just gonna stop here
sorry i didn't answer the questions I'm on my net book
Francessca =^.^=

Friday, November 11, 2011

Headaches Galore!

Hey ladies!
I missed a week...Again! Looks like Michelle and I (it's Hannah) have both been missing, haha.
I am not feeling so swell. Right now, I have a headache and some stomach yuck, but hey it's all good!
My parents and I went out to a convenience store and just sat at a table there and talked over some fries and a slushie for me for my headache (I find cold stuff helps!) and that was nice and needed, just to get out of the house :). I also got to go visit my grandfather who I haven't seen in I think over a year! So that was awesome, too!

I am going sometime within the next week or the week after to adjust my Lexapro. At first I noticed a ginormous difference in my pulse, and now I'm really not noticing much at all. My pulses are going up into the 130's just from walking up the stairs, which I haven't experienced in quite a while, so it's kind of surprising my body a bit. So, I think we'll be going up to 20mg! It's still hopeful! :) It comforts me because it seems that a lot of people with POTS are on Celexa, and Lexapro is very molecularly similar, it's just I can take the Lexapro but not the Celexa.

I am tired and my brain feels discombobulated (lol) so I'm going to go ahead to the questions;

Francesca: You didn't have a question, but I am glad to hear that the new medication and the IV therapy is working out for you! That's wonderful news! And YAY for the bake sale! :)

Logan: You didn't have a question either, but I am glad to hear about the protein drink, as well as the IV therapy for the next three weeks, that's awesome! I am also really hoping you get admitted and make some HUGE headway with your stomach problems, you really need it and DESERVE it girl! I hope prayer group goes better next week, and sorry that you got sick there! :(

Erin: I am sorry you are not doing so well <3 HUGS! Your question was if we had anything like your pinky tremor, or if we experience anything like that on ONE side. I get muscle fatigue that can cause tremor in  whatever muscle that was (the fatigue can come from anything from lifting a drink a wrong way, or exercise, etc). I'm sorry you're experiencing the body weirdness! I do get things like numbness and weakness on one side!

Miranda: I hope you had a blast on the field trip! That's awesome :) Your question was, does your hair fall out? Not recently, however, before I knew I was sick, I did notice some hair loss and I have heard of it in other people with POTS. I found though, after I quit using shampoo and started using baking soda to wash my hair, it started growing a lot faster, and I notice a difference when I use shampoo now, even sulfate free compared to when I go shampoo free. Personally, I have the mindset that if the shampoo is stunting my hair growth, it's probably messing with a lot more and I do know it can cause things like headaches (and cancer!), but anywho, lol I don't know if that is something that would help or not. Also, I LOVE my B vitamins for many reasons, and that definitely helps with hair, skin, and nails. I wonder though if hair loss or slow growth could relate to the fact that we are chronically dehydrated, a lot of us are malnourished and don't have enough blood in our heads most of the time.

Cheyanne: I am sorry you are doing so poorly! HUGS to you too! Also, I don't know much about genetics and gene mutations, but I am sorry to hear about that as well. Hang in there girl, don't lose hope! I'll be praying for you, and keep us updated! Your question was, what exercises do you all do? And are they easy on the joints? Before I answer this, I just want to remind you guys that I don't have EDS, so things easy on my joints, may not be easy on yours. I do pilates mainly. Some of the exercises hurt my knees, but typically they are okay. There are many ways to do pilates and I like to be creative with them, so you can tailor fit them to your needs and what you can do!

Somebody checked in? Who was it? Rhianne? Haha. Blogger needs to be nice to you!

My question, What headache remedy do you find most effective for you? Lately I've been getting horrible headaches, and I am finding B-2 takes the edge off, but I'd like to find something even more helpful. I hate taking Tylenol and Robitussin, but lately I've been surrendering and probably making my liver sad! One day I had a headache so bad, it took gently tugging my hair where ever it hurt (found that on that internet! Sounds crazy but it did help a bit!) rubbing a mixture of about 8 drops peppermint oil to an ounce of almond oil where ever it hurt that I could get too, taking OTC meds, and putting eucalyptus oil in the shower to make it tolerable. I am BIG on home remedies, so all ideas are welcome :).

All of you Dysautonomiacs (those who didn't post too!) and Dysautonomiac readers have a fabulous weekend and keep SMILING :)

Until next time...

P.S. I am really enjoying the 50k for awareness!! Whoot!

Wednesday, November 9, 2011

I feel terrible.

I feel super crappy tonight, so this is going to be a rather short post. The doctor actually called my mom a couple days ago and told us that they found that I have a MTHFR gene mutation. We are a bit freaked out. I don't know exactly all of the details because I have not talked to an actual doctor that knows about this. My kidney doctor ran the test, but she doesn't know much about that because it is out of her field. I have to go see a geneticist about that too. My whole family may have to get tested if it turns out my mom has it.

Physical therapy seems to be doing more harm than good. I'm not going back anymore. Since I am so hyper mobile it irritates something and causes more pain. I will have to figure out other exercises to do on my own I guess.

My Question: What exercises do you all do, if any, and are they easy on the joints?

Miranda's Question: Does your hair fall out? 
I have not had a problem with my hair falling out.

Erin's Question: Pinky/hand tremors?
That happened to me today in fact, so yes I get them. Ha! In class today my left pinky started shaking uncontrollably. It is the oddest thing. Tremors happen to me quite often. My leg will start shaking uncontrollably and other times it is my arms or hands. Once I had full body tremors.

I hope you all have a great remainder of the week!
God bless

Tuesday, November 8, 2011

Sunday, November 6, 2011

Pinky Tremor

Hiii girls!
I have been rather absent lately and for that I apologize. 
I have been feeling a little under the weather this weekend.
EXTREMELY tired. Not like the tired 
I get these weird pinky tremors (I guess you can call it). It only happens on my left side and my pink will just shake uncontrollably. I took a video of my pink doing this that I might post later so you all can get a better idea of what I'm talking about. If I lay it flat on the ground, it stops. I still feel an odd sensation but it wont tremor. If I pick up my hand or move my hand upwards, it starts shaking like crazy again :/


Do any of you experience this? 
This happens off and on but has been something that has been occuring quite frequently in the past year. I also noticed that typically, whenever something happens, it always occurs on my left side.

Do any of you experience this or things happening particularly to ONE side?


Francesca: I haven't gone trick or treating since I was in 6th grade :/
Miranda: I have horrible trouble with my hair. I left a comment on your post about it as well. I'm sorry your going through that!

Hope everyone had a good week & if your in the US, enjoyed your extra hour to the day!

Take care,

Thursday, November 3, 2011

Field Trip Tomorrow!!

Tomorrow I'll be going on my first school field trip!! We're going to the Newseum and it seems really cool. I'm not sure how I'm going to be with all the walking, but apparently they have a really cool glass elevator. I'm also sick with a really bad head cold and because of POTS I don't think it's safe to take any kind of medicine (pretty much all OTC) that can mess up my blood pressure anymore.

Since it's been so cold recently, my joints have been aching a lot. But I'd much rather have aching joints then have really bad blood pooling from it being really hot outside. Earlier this week we got 5 inches of snow where Hannah and I live. We had no TV/Internet for almost two days, so I was extremely bored and slept almost the whole time :)

I don't have any more important updates, so onto the questions!

Cheyanne: My stomach does almost the same as yours!! But it happens in almost never ending cycles.

Logan: I am so happy that you get fluids and you found some good protein! All of my electrolytes/potassium and such are always wonky, but I can never find some kind of drink or powder that doesn't make me sick.

Francessa: I don't go Trick or Treating and I haven't since I was like 9. I actually really don't like Halloween.

Hannah: You didn't have a question either but I wanted to thank you for the offer :) I use EVOO for my face sometimes but I add in a bit of fresh coffee grounds.

My Question: Does your hair fall out? For the past 2-ish years my hair has been falling out in huge wads, yet I still have pretty thick and long hair.

Bis zum nächstes Mal,

I am late on posting again, so sorry!

I was having a rough time last night and I couldn't find anybody online to sub for me. My stomach issues have declined in the past week, and so has my appetite! I've already lost 2 pounds in a week from not wanting to eat. I just do not feel hungry and when I put food to my mouth I get extremely queasy. I pray this does not end how it almost ended last time. If this continues a couple more weeks then hopefully I can get on the same medication that jump started my stomach before when my gastroparesis had started. The whole process is confusing. It all began with stomach was really fast and every time I would eat it would immediately come right back out. A couple months after that I had severe gastroparesis and my stomach wasn't working much at all. Since then it has improved, but now it appears to be not working so well again.

School has been a bit stressful this week. I have so much work due on all different days and I cannot take the textbook home so I was freaking out a bit about that in class today. One benefit of only going to school one period like I do is that I feel like I can focus more on my classes more...except on my brain fog days.

Tuesday I had my first real aquatic physical therapy session! It went well. The following day I was not sore at all, which was a big shocker. Other than that nothing new is really happening with me. :)

Miranda's Question: What is your favorite quote/Bible verse that you find inspiring when you do not feel well?
  • Psalm 107:20 He sent forth his word and he healed them; he rescued them from the grave.
  • I found this on the internet the other day and loved it: "Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I cannot be miserable all of the time. In fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please don't say, "Oh you're sounding better." I am not sounding better. I am sounding happy." 
Hannah: Thank you! Oh, no...I hope you feel better. GI issues can be the worst! I'm no longer taking Mestinon. What you said about the side-effects scared me LOL.

Francessca: I am glad you found something that helps a bit with the EDS pain!

Logan: What is the protein shot called? I saw a nutritionist and she told me I was not getting nearly enough protein. It is nearly impossible for me to get it all through my diet. My blood work is showing issues because I am not getting enough protein.

God bless!

Wednesday, November 2, 2011

I'll Make This Quick

I am really tired and not feeling good so I will keep this short. My primary doctor agreed to more iv fluids, for the next 3 weeks!  I increased my meds for sensitivity (which yes are really, really, helping)! And we talked about having me hospitalized for my GI problems, but we have no idea when or IF that will happen, so I'm not even going to worry about it at the moment lol.
My joints have gotten much worse this week, right now I have both wrists, both knees, and both ankles wrapped up, if I don't they hurt, and crack all the time, and I feel very unsteady like my joints are going to give out on me.  I feel like an old lady, but I really can't complain, I know there are girls with joints problems out there worse than me.
 Anxiety has been kicking my butt too, but I don't think its the kind caused by Dysautonomia, I think its just cabin fever related you know? 
I can only remember 2 questions... does my heart rate go all over the place?  With meds and physical therapy I'm doing pretty well.  The highest we have ever caught me was 133. I get uncomfortable when my heart rate is even 100 when I'm resting, and I know most of you girls with POTS get heart rates way over 133. I can't imagine what getting heart rates of 160 or 180 or something must feel like!
What is your favorite Bible verse to read when you don't feel well
Isaiah 58:11.

- Logan