My stomach is giving me fits!

I think I ate something that upset it or either it could be the medicine. Earlier this week my bladder wasn't emptying properly. I could barely pee. I could only release about 4 drops at a time. I missed school on Monday and headed straight to the doctor. I almost had to be cath'd, but after the doctor pressed on my bladder I was able to go a little more than I was. She decided to wait. By the next day I was nearly back to normal. We thought I had a UTI, so I had been taking antibiotics. Today they called and the culture came back negative. I stopped the medicine now. We guess that was all caused from dysautonomia. The remainder of my week pretty much consists of studying! I have to catch up on the work I missed and study for my dual enrollment test. I'm nervous about that one.

Christine's Question: Does anyone suffer from sleep deprivation and what do you do to help it?
I did! I could never stay asleep at night and it took me hours to even fall asleep. My autonomic specialist prescribed me Doxepin primarily for my sleeping (and pain but it doesn't help with pain). I do not know what I'd do without that medication. It definitely works. :) Also, I am sorry your gastroparesis got so bad! I know how that feels.

My Question: Do you know what as caused your dysautonomia?


God bless!
-Cheyanne

Tuesday with Christine

Hi everyone!
Well I am a maid of honor in my friends wedding this fall and I am really nervous my dysautonimia will be in the way. I keep trying to explain I have to make sure the dress is lightweight enough so I do not overheat.  She has Aspergers, a form of autism, and is many times difficult to communicate with. This time of year I dread the heat and migraines.

Last week my gastropheresis was so bad I looked 9 months pregnant with triplets. Such a terrible feeling. I ended up eating gluten free for a few days and things cleared right up. It didn't help my hearing aides were in the shop for the last three weeks. I had finally adjusted to loud noises once again. So it's back to readjusting to noise. The TV is too loud at a volume of 3, 4, or 5 out of 50. The phone scared me when it rang for the first few days back with hearing aides again. Lately my urticaria pigmentosa has been acting up. I found olive oil to be a great source of comfort. I thank Jesus Christ my Savior because He can do all when I am down.

Phl 4:13

I can do all things through Christ which strengthen me.

This week is Passover or Pesach in the Jewish faith. I have been really terrible this year. I consumed leaven on the second day which is unusual for me. I am a Messianic Jew so I really do not need to follow the passover abstinence of leaven but I feel closer to God when I do.

You know you have dysautonimia when: someone asks your email and you can't remember it.

Do you schedule your time? Most of the time I do because being organized does help with my dysautonomia.

How do you avoid getting sick in the car? Take Bonnine: over the counter motion sickness pills. They are chewable and work for 24 hours.
My question to you: does anyone suffer from sleep deprivation and what do you do to help it?

Blessings from the Lord,
Christine

I hate airboats!

I went on the boat with my family last weekend and to make a long story short there were a bunch of drunk people on airboats. Airboats are super loud! I never knew I had bad noise sensitivity, but all of the noise sent me into full body tremors/jerks. Some guy nearly backed his boat and truck into our boat as we were waiting to come in. Between the loud noise and my anxiety, I was a wreck.

I had to order special things to go in my shoes because I barely have any padding on my feet. I forgot what those "things" were called at the moment, so hopefully you know what I am referring to. When I walk you can hear all of the bones crunching. It is not a good sound at all.

My gastroparesis has been acting up the past few days. I can tell because I've had much more stomach pain than I have been having...plus the pain is up high. I've been a little more nauseated. And bloated.

hahahaha, I look like I am a few months pregnant. That is gastroparesis for ya. I am managing to eat, so it is not too bad this time. :) Mine goes and comes so much!

Oh and I am taking a guitar class now. Today I had my geometry midterm. My lovely school likes to wait to inform people about their exams the day before. Pretty lame, right? I was a bit nervous and I couldn't breathe very well in class because of it.

My Question: If you get tremors or jerks, what have you noticed sets them off?
Mine are set off by noise, sometimes pain, anxiety/nervousness, and I even get them if I am overly excited.

Hannah's Question: How do you guys do when you sit/lay down and read?
I do fairly well! The only problems I ever have is with my eyes. My eyes do not focus properly so most of the time everything gets really blurred.

Erin's Question: Does anyone experience MCAD symptoms?
All of my doctors ALWAYS want to bring this back up to me hahaha. When I had my colonoscopy done they found more mast cells in my intestines than there should be. They ruled out mastocytosis though.

Rhianne's Question: Do you schedule your time?
Not at all.

Finish the statement "you know you have POTS when?"

• You know you have POTS when something falls in your house and everyone screams, "Are you okay???!"
• When you go out in public and people think you are drunk or on something because you can barely walk straight. 
• When you can get "sea sick" from experiencing the comfort from your own bed. (I heard that one from somewhere hahaha) 

I hope you all have a great rest of the week!!

God bless, 

Cheyanne :)

When you make a video and it doesn't upload...

So this shall be just the questions:

Hannah: No, I never fall asleep reading haha. Try reading during the day maybe?
Erin: I don't have MCAD or the other thing.

My question: finish the statement you know have pots when?
Your parents don't freak out when you faint
You go to the bathroom and don't return to class and they almost send out a search party because they think your dead somewhere
You have your professor's mobile number
People ask you so you are okay now? Multiple times a week.
You get excited when Aldi is having an aged care sale

It's Sunday I'm in Love

Hi friends. 

I had an allergist appointment this past week. 

Surgery is in the works for my 95% obstructed nose & CT's were taken to look more deeply into my sinus cavities to see if there is other structural problems.

Has anyone had sinus surgery? I know it won't be too bad, and I'm just worried about it aggravating my POTS and start a flare up...

Also, they mentioned I am extremely sensitive. If you just barely scratch my skin, it raises or changes colors. The allergist/immunologist said it is dermographia.

Interestingly enough, I have always thought I have mast cell activation disorder and dermographia is an increase and sensitivity of mast cells. Also, mast cell activation is correlated with EDS and EDS is correlated with POTS. Whew... 

It seems like EVERYTHING is finally being connected :) 

It's so frustrating to have SO many symptoms.

My Question

Does anyone experience dermographia or mast cell activation disorder symptoms?

 Do you schedule your time?

I use my planner religiously, but I don't  schedule my "to-do list" ...only my appointments 

 I just always try to do too much. 

I hate not being busy. Even when I'm sick. 

 
  How do you guys do when you sit down/lay down to read? 

Oh my gosh, Hannah, I cannot stay awake for the life of me. I am desperate to stay awake and read Catching Fire but I always doze off. No matter if I'm sitting, laying, or what! I completely understand what you're saying.

Did any of you pull (or did someone pull) some good April Fools jokes today?

Enjoy your week!

xoxo

Erin.