One step forward, two steps back

Well this week has been crazy. I became very lethargic Saturday and spent the whole day in bed sleeping. I hardly ate and this continued through Sunday. I almost managed to attend all three hours of church but had to slip out during the last half hour suddenly finding myself exhausted. Along with that I could only manage a few bites of dinner and for the first time in my life, even though I was at first hungry, could not finish my small cup of freshly made cookie dough. I couldn't even finish half of it.

Monday is when it really got fun. I suddenly got a massive headache that wrapped around my head, ran down to my ears and across my upper jaw. I lost depth perception in my vision. I grew scared as it didn't go away after closing my eyes and laying down. My dad took me to the ER where I was taken for CT scans. They were inconclusive. The doctor said he could see something on the right side of my brain, although as he couldn't get my head in the right position to confirm what it was, felt that it must be something from the scan itself. However he encouraged us to follow up on it with an MRI. My vision came back and I was discharged with the diagnosis of a migraine, although he was confused as to why one would show up at my age as I've never had one before. It finally went away after some medication and a nap. Again I couldn't eat much dinner and only a cookie and a half for dessert. Never before has my appetite been so restricted.
 
Tuesday I got some fluids and electrolytes to see if that was the cause, but it made no difference which was good according to my doctor, meaning that I'm not dehydrated. He also made a cocktail he makes for his cancer patients packed with nutrients and other good stuff that chemo takes from their bodies. It had to go in slow so that I wouldn't get sick. I slept in the back of the car on the way home.
By Tuesday night I'd grown tired of this and decided to eat all of my dinner no matter how sick it made me. After an entire hamburger and many fries around 5:30pm, I was confined mostly to the couch until nearly 11:30pm. I felt so ill.
Today I had another appointment with the University of Utah. They did an EKG to test my heart to make sure I could take some new medication as well as drawing more blood. That was fun... The nurse's hands were shaking so bad and she missed my vein the first time so I just started bleeding profusely. She had to bandage that arm and poke the other.
 
I do feel better today. That IV must be kicking in. The first day I haven't spent in bed sleeping and I've eaten a bit more. However I can't help but feel afraid with things like this as I don't understand what's happening to my body. The new medication should help food move through my stomach better and I hope my appetite comes back soon.

The good, the bad, but mostly the ugly

Gastroparesis is the diagnosis after nearly half a year of testing. Each test made me very sick as I usually had to fast, the worst being the scopes. Starting with a CT scan, blood labs, an ultrasound, a HIDA scan, a colonoscopy and endoscopy complete with biopsies of my insides.



With nothing showing up on any of these I was recommended to the University of Utah where I was tested to see how long food took to get through my stomach using x-rays. A Gastric Emptying Study. That was where they found the answer. Food wasn't leaving my stomach as fast as it should, thus by the time it did go through, there was hardly any nutrients left for my body to take in.
By this point I was malnourished and my muscles were beginning to deteriorate. My hair had been falling out for a while.
 
 I bruise easily and my face is almost always covered in pimples and sores. I've been taking multivitamins, biotin, protein shakes, using special shampoos and conditioners. I permed my hair and trimmed and layered it to make it look thicker. I went to a dermatologist to get some help with my face but ended up having an allergic reaction like I usually do with new acne treatments I try. The joy of having sensitive skin.
I've mostly stopped driving, being too tired most of the time for it to be considered safe any longer. I spend most of my time in bed or on my couch. It's amazing how uncomfortable a bed can become when you spend all day in it. I've watched so many movies I've gotten sick of TV. Even at family parties I find myself having to sneak away from my cousins to take a nap.
 
I've been pretty lonely and somewhat isolated, moving back home to a small town where most of my friends have moved on and there is hardly anything to do.
The one thing that I hate is how the media almost glamorizes being sick, all the people that are always supporting you. It's been sort of the opposite for me. People who used to be 'friends' or people who wanted a date with me until they found out I was sick...That's what hurts. Like I have the plague and everyone must stay away.
There are also the side effects to what I have, such as burping often after I eat and having more gas than most people. I am almost always constipated with the occasional diarrhea. It becomes awkward and I feel bad. If I eat with someone other than my dad, if someone pays for my food or fixes a nice dinner I feel terrible for not eating it all or wasting it. I usually make myself sick trying to. Even drinking water can make me sick as my stomach quickly fills up.
I have no energy to do much of anything and tire quickly. Trying to go on dates or hang out with friends has been almost a nightmare when so much as a slow walk can exhaust me and make me sick most of the next day. I've struggled trying to go to church. I often get hungry at random times during the day and have to eat then as the pain is terrible. Also again being tired has made it a struggle. However I always try to make it to sacrament meeting.
I have luckily never been hospitalized though there were a few close calls on nights that I got especially sick. However people in my ward have come over to give blessings and put my name on the temple prayer list. My extended family held a fast for me. I've felt so blessed and loved at times.

The diagnosis was found just a few weeks ago and treatments have begun, starting with IV therapy twice a week to give my body the nutrients it has been lacking for so long. It's going to be a long path to recovery but I have high hopes and am grateful that we now know what it is.