Tuesday, April 30, 2013


Hey guys, I'm not feeling well today (mainly GI stuff at the moment), but I thought I would share the link to my personal blog. My old one got hacked so I made a new one, but I don't think I ever updated with the link.



Wednesday, April 24, 2013

I don't feel good....

...so I am going to keep this rather brief.

Like two Fridays ago I was hospitalized until last Tuesday due to that gastroparesis flare that I was talking about. I just got fluids the whole time because I was not eating much at all. There was one day where I did not eat period. They did x-rays and it showed that I was really backed up, so my intestines were not working either. I had not went to the bathroom for about a week. After a bunch of unpleasant things, I got to go home. Thank the Lord that my nausea decreased significantly. I know that my stomach is not working to the best of its capabilities, but I am not as nauseous. I am thankful that I am about to get food down now.

Since I have been out of the hospital, I have been beyond my normal POTSy. I assume that my autonomic system has decided to lay off of my stomach and to attack my heart. I'd take heart symptoms over GI problems anyday so I suppose I will be okay. I haven't fainted yet!! That is always a plus! :)

I hope everyone is having a good week!

God bless xxx

Friday, April 19, 2013

I'm Not Good With Titles!

Hey lovelies! Sorry I missed posting! I come to you playing Mario Kart (writing this in between live races- ha).(Okay, that didn't work so well...)

I'll start of in response to you other gals:

Logan: I'm glad you are having ups with some of your symptoms but sorry about the downs with others :(
I know what you mean about the sensations like something is crawling on you or things of the like. I get sensations like droplets of water are falling on me.

Cheyanne: Congrats on college and driving! Whoop! Sorry though that you are dealing with a worsening of symptoms! To answer your question, Have any of you had any experience similar to mine regarding the sensory overload? Does it mess your body up for a long period of time like this? I wish I had an answer more helpful, but usually for me, my sensitivity comes in spurts, and the symptoms I get are reactions indeed to the sensitivity, but they usually don't last longer than the sensitivity.

Right now I am dealing with awful acid reflux, the kind that makes you feel like your heart is trying to kill you or something. However, praise God, our doctors office had some Nexium samples, so I'm going to start on those tonight.

I've been exercising a lot for almost a week now as well as helping my mom with daycare for most of the day (that I'm awake- ha.). I've been really enjoying it. I don't know that I'll do much today because this acid reflux is horrible (I'm in my recliner right now). It drains my energy. Yuck.

I think that is all for now. Until next time...

Wednesday, April 17, 2013

Hey Cheyanne

Hey girlie, I get the sensory overload too. I'm sensitive to sound, temperature, and touch everyday, and I'm often sensitive to light and smells too. Its pretty much kept me home bound for the last 4 years, and although my sensitivity has been a little better the last say.. month and a half... I still have to protect myself when I'm out of the house, and sometimes I can't go out at all. Especially if I have a migraine and my sensitivity is extreme that day, or its too hot/too cold... something beyond my control where I can't protect myself.
Miranda and Hannah will remember this.. 2 years ago me and my dad drove down to visit them. I got very sick from sensory overload the day before we left, and the trip was full of sensory overload too. For about 2 weeks I was pretty sick and I had problems regulating my body temperature. I had to be very careful how I dressed, if I tried to use a blanket or wear too much clothing I would get a fever. After we got home and I was able to rest with some peace and quiet for a week, my body recovered and things pretty much went back to normal.
I don't think you're crazy, its possible that sensory overload worsened your symptoms, or it could have just been a coincidence.
- Logan.

Wednesday, April 10, 2013

It's Cheyanne! (sorry I forgot last time I was supposed to post)

I was doing pretty well for the past few months...aside from fatigue and the usual Ehlers Danlos pain of course! I have actually been trying to have a little bit of a life. So far it is working out decently. I am continuing to go to the high school for one period everyday and going to the college on Tuesdays and Thursdays. The rest I do online. Today I got my drivers license. Yay! I hardly ever drive because by the time I get to where I am going, I am too exhausted/in pain to get myself back home. Regardless, it is a nice accomplishment even if I hardly ever get to drive. 

I am currently not doing as well. My stomach has decided not to work. It is REALLY bad and close to 2010 all over again. 2010 was the worst and when I got down to 90 pounds. What is odd is that right before this flare began (I mean literally...right before) I had walked into this shoe store at the mall and got a sensory overload. Between the lighting and carpet and walls it wacked me out. My head felt funny and I couldn't walk straight. As soon as I got out of the store my stomach started hurting and I got super nauseous. Ever since then, my stomach has been bad. I am almost scared to bring that up to a doctor because they will think I am a complete looney tune. 

Hannah: What is your favorite "pick up" beverage? What hobbies do you have?

Hmm...when I am POTSy I usually gravitate to Powerade and any other time I like water or Diet Coke. :) As far as hobbies go, I like to blog/write or listen to music. I am constantly listening to music. 

My Question: Have any of you had any experienced similar to mine regarding the sensory overload? Does it mess your body up for a long period of time like this?

I hope that everyone is doing well! God bless. xx


A Road Map Would Be Nice

Hey guys, I know its been a few weeks.. 
I'm still trying to sort my body out. I seem to be going through some major symptom changes! My sensitivities are better, but I've been more POTSY lately, and I'm having temperature regulation problems, while my GI problems are a little bit better. On top of that lots of my minor symptoms have changed. For example, I only have excessive sweating maybe 2 or 3 days out of the week now, the rest of the time I don't seem to sweat at all, even when exercising or doing chores. I used to feel sensations that aren't real a lot, like bugs crawling on me, or rain drops on my skin. Hot, cold, or wet sensations.. things like that, and it used to happen constantly. Many times a day, every day. Now it happens maybe once a day, or not at all. Also, my pupils are super dilated all the time, they look freaky huge. That hasn't been a regular/daily symptom for me in months, my pupils have been pretty normal for a while. Its a lot to take in, and I'm kind of on my tip toes wondering what my body will do next, because its so unpredictable. I keep waiting to see if something else will get worse, but I'm really hoping that else something will get better.  
We decided to try increasing some of my meds slightly, so I'm hoping that will help with my POTS. Otherwise, my only main concern is with my temperature problems. Its easy to regulate my temperature at home, we set the thermostat as warm as I can stand it (usually 70-75 degrees F), and if necessary I dress warmly too. At home my temperature mostly hovers around 98.0, which is perfectly fine, but my temperature drops when I leave the house.  I dress warmly when out of the house, and I keep an eye on my temperature, and so far it hasn't dropped to a dangerous level (at least that I know of). What bothers me is that my temperature can drop 2 or 3 degrees even though I'm really only exposed to the cold for a few minutes. When we go somewhere I am only outside in the cold for a few seconds when we walk between the car and the building, and it may also be a little chilly in the car, but only for a few minutes since we turn the heat on. That's it, that's all it takes. I'm glad that spring is here and I'm looking forward to the warmer temperatures, but it also occurred to me that summer is coming, and soon everyone will have their AC cranked. Even in the summer if I go into a chilly building, I might have to watch my temperature. I am super thankful though that I don't seem to be having problems with high temperatures, my temperature doesn't seem to go over 99, even with a heavy blanket on.
In answer to Hannah's question, my hobbies haven't changed much. Mostly I knit/crochet, or read. (I need a life).

Thursday, April 4, 2013

Hey guys! I hope you don't mind me posting an hour early from my day. I'm having a bad night so... Why not? Though I will say, I'm starting to feel awkward just talking about myself on a group blog. :p. I hope you ladies are okay.

Unfortunately my cardiology appointment for tomorrow was cancelled on their end, and it was a re'schedule because they cancelled the last appointment as well, and it's already been six months since my last cardiology check up so I'm kind of stressed about it, but we're going to try to get in with a local cardiologist and if all the man does is give me an echo, I'll be pleased for the temporary check that things are still okay. Last time the cardiologist pointed out things we already knew about my heart but when they give even just a tiny bit of importance to a defect it makes you a little bit nervous, y'all know what I'm sayin'?

I'm sitting here with things in mind to say but can't remember the timeline in which they happened so I don't know if they were in my last post... Ahhh ha. Like I've said this time of year isn't good for me, but I've also pushed myself- a lot. As you ladies know what I mean, I don't wanna live my life from bed, I want to get out and do things even if it has a physical cost. Just as "they" (whoever they are!) say, do you want to live dying, or die living? My dad translated that to help me verbalize my feelings about pushing myself. Do I want to live sick, or be sick and live? Hopefully y'all get that and I didn't already say that before (that conversation was months ago, but feeling these heavier consequences for my choices to push than recently is challenging that thought). I want to live! Even if just for one day of activities for the expense of a week in bed. I want to live. Not that you can't live from bed, I had begin the journey to be content with that and encourage others so be. Sometimes when you are bed bound, pushing like that is simply not an option when walking to the bathroom gives you PVC's, and I encourage those who are still more often like that than not, to make the most of your life, because it is still valuable! And those that can push to sit on the couch with your family instead of laying in your bed, I encourage you to do it! :)

Alright, enough of my musings about pushing, until next time,
Hang in there!