Sunday, July 26, 2015

Testing Breakdown

(I don't really have pictures as most of the tests electronics weren't allowed)
My first test was a CT scan February 17, 2015. No food or water after midnight. It made me very sick having to drink two bottles of nasty 'fruit flavored' liquid that would help them see my insides better. I was about done with my second bottle when a nurse came out with two new bottles for me... I quickly explained that I was almost done. I was NOT putting myself through that again. She disappeared and returned to give them to the gentleman next to me.
The nurse took me back to change. The hospital pants were huge! A baby elephant could have fit. The strings were hanging down around my knees after I'd tied them in a bow... I got my first IV, the tube was thick and it hurt. They shot iodine into me after some pictures. It made me really hot and I felt awful. A side effect of it, they explained beforehand was that it would feel like I'd peed my pants even though I hadn't. That was a lovely sensation. I was very sick for the rest of the day.
Results: Other than a small rupture they found which should go away on its own, nothing was found.

March 5-6, 2015
Today I got an ultrasound and they took bloods. The ultrasound kind of hurt as she was trying to get the pictures she needed and would jam the tool under my ribs or deep into my side. They took so much blood is was as if I had donated.

The HIDA scan followed the next day. No food or water after midnight again. That's hard as my stomach gets sharp pains when I'm hungry and my appointment wasn't until 11:00am. I didn't have to drink anything or change my clothes though. I got to keep my phone and had been encouraged to bring an ipod or some form of entertainment. My dad even came back with me. Another IV... they poked a vein on the side of my arm instead of the center. That hurt... The first hour was fine. I just had to lie still. The doctor had even gotten me a blanket. The second part I got really sick. He injected what would be the equivalent of a three course meal to see how my gallbladder reacted. So that was done in three parts and each time I felt so violently ill. My dad is amazing. He put his hand on my head for comfort.
Results: Everything is normal

March 16, 2015
Colonoscopy and Endoscopy. No solid food after midnight... ok, I slept until 2:00pm trying to ignore the hunger. I made some broth for dinner. I felt dizzy and lightheaded but that seemed to help a bit. It's just that drinking liquids on an empty stomach has always made me feel sick, my whole life... Then I had to drink the prep stuff. I tried just chugging it but it was so horrible I only got a third down. I was so sick and so hungry and I just started crying because I couldn't do it and it was so frustrating. My appointment wouldn't be until 11:00am tomorrow and I just couldn't make it that long. I'd have to wake up at 6:00am to drink the second part and two bottles of water on top of that. Dad called to cancel it and made me some macaroni and cheese. I finally started feeling better apart from a headache. However if I'd tried to continue, I might have ended up in the hospital that night.

March 23-24, 2015
Instead of the prep stuff, my doctor had me OD on laxative pills to clean out my system. 10 Dulcolax gel capsules twice. I was throwing up all day. The only plus to that was that I wasn't really hungry. To finish it I drank some Magnesium Citrate which I mixed with lemonade. I drank so much that I felt very bloated after. I couldn't really sleep that night.
The nurses had fun with the IV drip. The tube wouldn't go all the way in my hand. They kept trying to jam it in. Talk about painful... They finally gave up on the hand and tried again a little further up the arm. I was sort of crying by then... However before they could do the scopes they had to have a urine sample to make sure I wasn't pregnant.. Since I'd been throwing up all day yesterday I was kind of empty so I had to wait for the fluids to start kicking in. I'd started feeling lightheaded and hot so I closed my eyes for a minute and kind of passed out. When I woke up I thought it was all a dream for a second until I looked down and saw my IV. I almost started panicking.
I was taped up with heart monitors and they gave me oxygen after they wheeled my bed into surgery. They attached the anesthesia into the IV and had me roll over on my side before I was out.
Next thing I knew I was being helped back into my clothes and walked out to the car. A nurse had to help me walk and dad helped me inside. I asked for a muffin because I was hungry, but was still kind of out of it so I didn't notice the paper cup until I bit down on it..
Dad also told me that I'd given him a full report of all they did to me and how I had to take my IV to the bathroom. All that good stuff. Well now I know how my body would probably react to an overdose and perhaps what I would be like if I were intoxicated.
Results: The biopsies all came back clear. Other than a bit of inflammation in the lining of my stomach, all is normal.

I was referred to Primary Children's as I was still 18, yet they said they could only see me once since my birthday was coming up. So we were sent to the University of Utah.

June 16, 2015
Gastric emptying study. I had to eat two slices of toast and a cup of disgusting egg whites. They said if I didn't eat it all they couldn't do the test. There were small amounts of radioactive chemicals in the food that they then watched over the course of the next four hours with an x-ray.
Results: Food isn't moving through my stomach as fast as it should. This is called Gastroparesis or 'lazy stomach'

Thursday, July 23, 2015

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.

Saturday, July 18, 2015

Captured Beauty

I've wanted professional pictures since I lost weight. All I've had to look at and deal with were selfies, mirror reflections and the occasional picture I took of myself using a camera stand and taking a video where I later cropped out the images.
I wanted to know what I truly looked like. It's strange because I don't see in the mirror what I see in a picture. I don't see my bones so prominently, I see each scar and blemish so clearly.
My dear friend, Tori Gilmore did a beautiful job not only in taking the pictures but she fixed up my hair and makeup as well. I for the first time in months feel beautiful again. I still can't help wondering though if this is truly what people see? My stomach sticks out when I sit, I pick the skin off my lips and am covered with scars on my arms and legs from my lifelong battle with eczema. Acne has left my face riddled with them as well. But in these pictures I see my golden hair and emerald green eyes shining. I see pure and true happiness that I'm only just starting to feel again. I see my collarbone sticking out at a sharp angle, my jawline, my hips.
 I've never had much confidence about how I looked. I've been told my scars and sores are ugly, that no one would ever want to kiss my lips, that I'm fat (which okay, I was overweight, but not the best self esteem booster for a 10 year old) Never asked to a dance or on a date in high school, always picked last for projects or sports. I was just never good enough. 
Now I struggle because I'm getting asked on dates and people are interested, but are they interested in me or my body? It's never been a winning scenario. What does it take to walk through the world with confidence? Not cockiness, but knowing who you are, what you stand for, and being comfortable with yourself. Just knowing that you are enough. Not having to prove anything or be anything.

 I wore makeup for the first time during my junior year of high school and specifically remember being called pretty three times that morning before the bell had even rung. That's what decided it and I never went to school again without it. Because I was suddenly pretty.
I'd been encouraged to suck in my stomach to look skinnier, whenever I sat down I'd tuck it into my pants, breathe through my chest, anything I had to do. Because people like skinny. But there comes a point when we all must realize that it's fine to wear makeup, so long as you're wearing it for yourself, not to impress anyone or stand out. That there's nothing wrong with feeling good about who you are. That you're not vain for being comfortable in your own skin. That it's okay to say thank you when someone calls you beautiful and if they're not okay with that then you don't need them in your life. But it's also alright to go to Walmart on a Saturday without anything on your face because you're human and you're not perfect, but neither is anyone else. So let it breathe once in a while and be happy with who you truly are. I feel that once this is accomplished, then maybe, just maybe, I'll be there.

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.

Friday, July 17, 2015

Weight on my Mind

Where to begin? This is me. I lost 70lbs in about 8 months. The part everyone gets jealous of is that I wasn't even trying.
Around January 2014, my senior year of high school, my appetite suddenly decreased and I found that I wasn't able to eat as much as I used to. I thought nothing of it. I was now eating normal serving sizes. Half a pizza instead of a full one etc. I didn't fully notice the change until I had to go buy new pants. My first size change was massive, from a 14 to an 8 but it didn't stop, dropping to a 4, a 2 and finally a size 1. My shirts went from medium to XS, 182lbs to 112.
I was enjoying my new body. For the first time I was being asked on dates and making friends. I felt more confident and happy. I remember being able to look in the mirror and like what I saw.
But then people began asking if I was anorexic. If I'd realized how much weight I'd lost. Yeah, actually. I'm the one who's been buying and giving away all those clothes. Do they realize how hard it is to find tall and skinny jeans?
Things seemed ok, I was active and eating healthy, and even unhealthy... Ice cream is my weakness and on payday I couldn't help sneaking over to Subzero for dinner. I've never counted calories or truly cared about what I consumed. If it tastes good, I eat it.
But then December happened. Eating started making me sick. What had started as fatigue after a few hours of work or a class at school turned into spending nearly all of my free time in bed sleeping. I had no energy or strength to spare. I could hardly eat five bites of food before I was full.
Despite this it took until February 2015 for me to finally admit that there was something wrong. I was so determined that I was fine. I'm not anorexic, I was under weight, okay, but no one batted an eye when I was overweight... By then I had moved back home, quit my job and discontinued college. I just didn't have the energy or ambition to do much of anything. I am so grateful to my dad for the support he has been to me through all of this.