I have always been a person who considered my health above average. I rarely got sick even though I had type 2 diabetes. This year right after ending tax season, I started to feel really sick. I wasn’t too worried except for the fact that I couldn’t eat. I started to think it was nothing and ignored it eating when I could. Finally, I wet to the hospital after almost two weeks of puking anything that touched my tongue. I was misdiagnosed and sent on my way with a 2k hospital bill. I started to take the medicine I was advised to take and things were getting worst. Soon, I wasn’t able to handle water. I was losing so much weight my friends were terrified for me. I was going to the ER once a week and then every two to three days. Finally, right before my birthday I was hospitalized when my blood tests came back strange. They ran test after test and came to the conclusion that motility was the problem. At 32, I was diagnosed with gastroparesis. I spent my birthday in the hospital before finally being released. I would later have a 50k hospital bill from that alone. I would go days with feeling better before the cycle of going to the ER would return and then I’d end up being kept again and almost placed in CCU due to the throwing up and my blood tests coming back abnormal. There needs to be a cure. This disease has made my life so much harder. I can’t work a full time job. I can’t ever be normal again and eat the things I love like salad and broccoli. It would be nice to one day enjoy those things again.
I have this thing, it’s called gastroparesis. When I was first diagnosed I was hopeful. I set my sights on the road to my inevitable recovery; because “I am only 30ish, it’s not like I’m going to die or anything ! No, I am going to beat this, nay not I, we were going to beat it. You see 8 years ago when I was diagnosed, I had a tribe. Aaahhh yes, my tribe headed up by the linked arms and the strong footfalls of my parents, my husband, my ex husband and my children.
Unfortunately what no one tells you is this illness doesn’t just affect you only physiologically, but it shakes the very foundation upon which, if you like me, you thought was indestructible. No, this illness takes away your ability to go out to dance at the club or bar……because, well, no energy. It takes away your ability to take ridiculously named, but awesome looking and tasting shots……because, ugh, too nauseous. You have to cancel plans at the last minute… ..well, I’m just in too much pain.
So as I wigggled out of my old super social life into my new less than one; I noticed something, I was suddenly able to feel the wind at my back more freely, I whipped my head around to query my tribe. It was then that I realized several people had fallen away; not just for a pit stop to grab a water and return or sit briefly upon a rock to catch their breath, no they had fallen away and not returned. I blamed myself. Well if you hadn’t missed that birthday party or our the big labor day shindig, then so in so and you know who would still be here. You see this illness tries its best to wrap itself around your body and your life and squeeze every part of your status quo into hospitals, pills, countless Doctors, surgeons, specialists, and diagnostic testing. This illness shows you how humans truly behave, especially the ones in your tribe.
Gastroparesis has been being nice to me the last week. Nausea is like always … 24/7. However it’s been mild. I’m holding around 120 lbs right now. I say all this because just a handful of years ago it was really kicking my rear. In December of 2012 I went from 135 lbs which was hard fought to gain back to after my original lose during diagnosis back in 2010. Anyway in a two week span I went from 135 to 82 lbs. My gi was recommending tubes to feed me and one to drain my stomach. I refused as I’m stubborn and didn’t want an operation (this was prior to having my gallbladder removed for my first surgery) and wanted to try to avoid one.
I fought hard daily to control my violent vomiting sessions. My severe nausea and pain we’re horrible. By 2016 I had managed to get up to 120 lbs finally. Then I had my gallbladder removed. My gp got pretty bad again till almost 2017 when I started a approximately year long remission. During which I went up to 178 lbs. In June of 2018 I started losing again and by December I had dropped back to 110 lbs. During that six months I did my best to care for the love of my life as she was losing her battle with metastatic breast cancer that had metastasized and spread through her body. After she passed I slipped into a bit of a depression and let my health go south. Due to my vomiting and non-existent appetite my potassium dropped to a 1.2. For those that don’t know potassium levels should be between 3.5 and 5 to be within normal range. I had no energy and barely left my bed. I ignored my chest pain, low BP, and the numbness in my limbs. I didn’t really care. My primary doctor and the love of many people I care about both known in person and known only from Facebook gave me a reason to get out of bed and get to the hospital and get my health going the other way.
Now here we are in August 2019. I’m alive and fighting the good fight on the bad days and doing as much as I can on good days. Everyday unless I’m to I’ll to be online I’m here in the gastroparesis support groups doing my best to support and love others that are fighting. There are many of us out there. We look like your brothers and sisters. Your sons and daughters, cousins, mothers, best friends, wife’s, and others. Some of us gain while others lose. Some like me experience rapid and drastic fluctuations. With periods of stasis where we can’t gain but also don’t lose.
We have lost many warriors to complications of this and or comorbid diseases. We’ve lost children as young as 3 and older adults. Our lost gp brothers and sisters vary in size, shape, color, age, and more. We remember them and mourn their loss.
Please if you read this and care for me at all do me the favor of sharing my story and other gatroparesis posts. Spread awareness and advocate for awareness by doing so.
If you have questions message me and I’ll do my best to answer them for you and help you understand. We are starving for a cure. We need help spreading awareness.
I had just graduated Nursing school 7/2004, took my exam, interviewed, was hired and started my LPN career with exactly the place and shift I wanted all by 9/7/2004. Things were going along smoothly. Then, Thanksgiving Day 2004, Harvey made his debut.
Vomiting and severe nausea. After 2 weeks of this I went to see my PCP. The testing began. All scans and tests came back ok. Then, he ordered the Gastric Emptying Study. After 3 hours, I was in such severe pain that the doctor ordered it stopped. Nothing had moved. I was started on Reglan. Not a good med.
Hi, my name is Christy, I am 43 years old and was diagnosed with GP 2 years ago. I am a mother of four beautiful girls. I also suffer from Fibromyalgia, Diastolic Dysfunction and Chronic IBS.
Because of my illness I battle depression on a daily basis. I have recently gone on long term disability through my employer because it has gotten too difficult to perform normal daily tasks. I never seem to have enough energy to even do simple things like go to the store. I’m constantly nauseated and if I get out into the summertime heat it worsens.