Dysautonomia/ POTS Pain

It has been a trying week dealing with pain.  On most days I have a very high tolerance for pain, but lately it has been hard.  

Sleep escapes me at night.  I spend most of my night, it seems, twisting and turning, trying to get into a comfortable position.  My shoulders seem to pop out of place when I move.  My arms fall asleep....instead of me.  My legs hurt.  My head feels like it is on fire, but I am not sweating.  I switch positions on the bed in the hope that I can get more comfortable.  I get up and turn on another fan.  Yep, if I cannot get cool with one, then two should help.  

I get up just a few minutes later to turn off one fan, because now I am too cold.  Cold intolerance.  Heat intolerance.  What the heck is going on? 

I get up in the morning, take a step and feel like I am going to die.  My feet hurt like a thousand needles are being pierced into them.  It's hard to walk so I lay back on the bed in the hope that the pain will subside and I will then make it to the bathroom before I pee myself from the sudden urge that now engulfs me.

This is just one day with POTS/dysautonomia symptoms.

I had no idea what this was even just a few weeks ago.  I just knew that something wasn't right with me.  An ER visit introduced me to POTS and my cardiologist confirmed POTS/Dysautonomia just a few days later.

His next few sentences just about went over my head as I sat there in a daze trying to comprehend what he was trying to tell me.  I did remember him saying that we can just try to make my life as comfortable as possible from here on out.

Heat intolerance is the worst.  I'm a heat-loving girl, born on an island, for crying out loud.  How do I not go in the sun?  

The truth is, if I am in the sun past 7:30 a.m. it is unbearable.  

I'm tired.  So tired!  I can't explain it.  I hurt.  My fingers lock up on me.  It's hard to open a simple jar.  It's hard to turn the handle on a door.

It's hard to explain to my doctors what the level of pain that I am feeling is. 
However, if I were to somehow transfer my pain to these doctors and nurses, I am positive that they would all collapse to the ground.  I am sure they would all be squirming in agony, crying out for someone to help them, and puking uncontrollably everywhere because the pain is too much for them to handle. 


It's past midnight and usually I wold be in bed considering that I am up a lot and get up at 6:30 in the morning.  

Winston Churchill once said, "If you're going through Hell, keep going."

I lean on my favorite Psalm in times of difficulty:

"God is my refuge and strength....a very present help in trouble.  Therefore I will not fear......"

No matter what happens, I will hold onto that.Until next time

Colonoscopy prep and Dysautonomia

It's 4 days before my colonoscopy, and, to be honest, I am a little worried......about getting dehydrated before the procedure among other things.

For the last few months I have experienced severe joint pain, as well as horrible neuropathic pain and tingling in my hands and feet.

I'm sitting here sipping elderberry tea because I feel like I am about to come down with a horrible cold. Elderberry tea is red and I am drinking it 4 days before the procedure.  It's not artificial red. It's natural red, so it should make a difference, right?  I just don't want to have to postpone this procedure.  After all, my GI doc has been trying to get up my ass for the last 8 months.  I couldn't do it in March because I was still recovering from a hysterectomy that I had in November.  They just wanted to make sure everything had fallen back into the right places before anyone went poking around in there again.

So 8th of the 8th at 8:00 a.m. it is then.  I should play the lottery the day before.  I would say that day but I am not sure how I am going to feel after the procedure to run out and purchase lottery tickets.  However, feel free to purchase some on my behalf.  If you win, don't forget to share. Don't be an ass about it.  After all I had to put my ass on the line for it.

Stay tuned for updates....

Update:
It's now 2 days before my procedure and I am already feeling the pangs of hunger.  Today I have only been eating soft foods...such as yogurt and apple sauce.  I can't live for the next two days like this!!!!  Tomorrow at 4 p.m. I will start the  prep solution, and I am certainly NOT looking forward to that.  I remember the solution that I had to drink when I had the stomach biopsy.  This does not bring back pleasant memories.

I will let you know how the prep is going tomorrow, if I survive the night.  I am so hungry right now.

My neighbor took me to a friend's house today to pick fresh coconuts so tomorrow I will have fresh coconut water, considering that I have to mix the prep with my choice of liquid....coconut water it is.

Update:
It's the day before the procedure and to say that I am hungry is an understatement. I had soft foods yesterday, and today I am only allowed to have liquids.  I start the Suprep solution at 4:00 p.m. and the second set will happen at 10:00 p.m.  I have to do it this way as my procedure is early in the morning.  I have to check in at 7:00 a.m.

It has been tough as I have not eaten solids since Saturday and today is Monday.  I tried to keep myself busy by working outside a little.  BIG MISTAKE!  I got so tired, and nearly passed out in the shower.

A few minutes after I got out, the hospital called for pre-registration.  That took several minutes so I could not focus on the loud, angry grumblings that were coming from my midsection. I'm trying not to move around too much, as I think it will help with not burning calories, but it is certainly not helping with not focusing on the hunger.

I showered and washed my hair since I may be so hungry in the morning, I may not have the strength.  If I feel horrible, I guess I can just use some wipes to clean the private areas.  They're not too concerned about the rest of the body, and I'm going to be just another asshole to them anyway.

See you in about 2 hours, when I will begin the prep solution.