BRENDA'S PERSONAL STORY

February 11, 2016 Gastroparesis
Country : USA Satate : New York City : Port Jefferson Station 

I thought my life couldn't possibly get any worse. Yes, I have an amazing husband and three awesome kids ranging from age 13-22.
Sometime around February of 2014 I was called to come into my doctors office immediately. He walked in the room and had two boxes in his one hand. I shook my head, "No No No" as he said "Yes Yes Yes". My blood sugar was way of the grid. I was close to kidney failure.
He monitored me closely for weeks. And I corrected my diet, took my meds faithfully and joined the gym.
I hated the idea of having diabetes but I was smiling. I lost 60lbs and was happy about myself. I accepted being a diabetic.
May 2014, Mother's Day weekend. Small things started happening, one by one. Why was my foot hurting from the water of the shower hitting it? "How odd."
The next day same thing, only this time the water is hurting various spots of my skin on the right side. At work I go get a nice hot cup of tea. Wait a minute. Did I just say HOT? Why dont I feel it hot or burning my hand like usual since supplying us with these cheap cups.
OUCH! Why is it so hot in my left hand?
I decide to go over to some of my friends at there work area. "Here, hold this and tell me what you feel." There reply? "Hot". Well why cant I feel it in my right hand? What is going on?
I dont remember if it was that night or the next but one of my good friends took me over to the hospital. They ran so many test. No, not MS...No, not Lymes...not neuropathy since thats bi-lateral and whatever was happening to me was lateral. Even the doctors were baffled. After seeing 3 seperate Neurologist the only thing they can possibly chalk it up to is a "Sensory Stroke." Not your common stroke where it affects your heart. This only effected my entire right sides senses.
Four months later and i was just learning to just deal with my new "Senses."
August 2014 I got hit with a nasty virus. It made me feel so drained for two weeks after. Well, at least I wasnt vomiting. You see, I have a fear. Emetophobia! The fear of vomiting.
September rolls around and again I find myself with some sort of virus. A week later, im nauseas as all heck. Why is this happening so much? More days past and im vomiting. ....more days pass and im nauseas. ..then vomiting. The cycle just kept going. The nausea alone was lasting longer and longer. I couldn't lay on my stomach to read or sleep because it would activate the nausea and vomiting more so. I stopped all my other medications think maybe one of them was the problem. Maybe I was allergic to one, especially my night ones since taking my meds then always seemed to cause the vomiting. I started eating only saltines and soups. I was affraid anything else would just come back out.
Finally I gave in to my friends offer, after 6 weeks, to take me to the hospital.
Blood work, urine, questions, IV, nausea/vomit medication. 24 hours and no food, no drink, none of my other meds and the endoscopy begins. "Let's check out that gall bladder or possibly hernia." As I am waking up I recall hearing, "Your stomach is completely full."
Then I hear that weird word? Gastro huh? What is that? Well come on lets fix this....no more vomiting.
I wish it was that easy. My fear of vomiting has just manifested! Of all things! Of all diseases, leave it to me to get the one to live off my fear!
I was left in the E.R. with no explanation. No understanding. I couldn't even pronounce the word. Gastroparesis. As any of us would do, I went home and hit the internet. "Google, tell me what gastroparesis is." Ok, I can do this, its not so bad. Whoooo, death? Slowly starving to death? No cure? Limited medications?
And the tears rolled.
Funny, people say, I'm looking good. They truly have no idea whats happening. How it feels. What am I suppose to say? "You jerk...im sick, its a disease and it cant be fixed? No, I cant. Im the one that always puts on that make believe happy face. The silly one. The one to make everyone laugh. The one to be there the best that I can and give all I possibly can to others. The strong one.
But now, like so many before me, I suffer.
We all suffer....one way or another. Some more then others. We have good days. We have bad days.
Abdominal pains, nausea, vomiting, weight gain, weight lose, bloating, malnutrition, constipation, diarrhea, heartburn, feeling full after just ONE bit...yes, ONE bit!
Now everyday is a new journey...a new struggle. And just how do you actually tell your friends what its really like. Oh sure, of course they know vomiting. But they dont know everything else.
There is no cure.
There is limited medication.
I cant enjoy my foods anymore. Not without suffering the consequences. And that just brings out my fear!
Imagine having the flu. You see how horrible you feel? Thats only temporary. My flu and 5 million others last forever!! This disease needs to be paid more attention to.
So why did I explain so much? Two reasons. The doctor has no clue why I actually have it since it tends to effect diabetics who have had it for years, but I have not. And the second most important reason, to myself at least, to hopefully give a little more strength to myself to get out of bed and keep moving everyday. Why? Because I'm scared!!!!

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