after getting my port, i was finally able to get some relief from the constant nausea with the IV zofran. But a couple of weeks later, the nausea and vomiting became bad again. i always puked in the morning at least once and by the end of a “good” day, i would throw up 4-5 times and by the end of a “bad” day i would throw up between 6-10 times. every. day.

my PCP prescribed four different anti-nausea meds over the span of a month to try to get me to keep down food, but it never failed 10-30 minutes after i ate, i would have to rush to the restroom to throw up. during this time, i was worried people would think i was bulimic because i was throwing up so often.

i met with a gastroenterologist to talk about my stomach and how much i was struggling to keep food down. she recommended a nuclear gastric emptying study where i would have to eat radioactive eggs and toast and get X-rays taken every hour for four hours. at the end of the four hours, a person should have no (or very little) food left in their stomach. the morning of my test, i ate the eggs and toast, took my first X-ray and threw up five minutes later. it invalidated the test and we scheduled it again for a week later

this time, the GI doctor told me i was able to take zofran before the test and this time after eating my radioactive toast and eggs, i was able to make it through the four hour test. i had another appointment with. Y GI doctor and she said at the end of four hours i had 40% of the food left in my stomach. she diagnosed with with gastroparesis and we started trying to find medications to help.

the first two medications that are often tried for treating g gastroparesis are ones i’m allergic to, so we opted to try the third medicine which contained several risky side effects. after my first dose, i ended up having to use my epi-pen and get to the hospital. i was frustrated and scared because i knew we were at the last medication to use that is FDA approved. there is one other medication that is sometimes used in Canada and the UK, but the only way to get it in the states is from a compassionate use clause. but my doctor felt that was too risky with all of my allergies.

i decided to keep trying the anti nausea medications for a while but by mid-September, there were no more “good” days related to vomiting. it was a Monday and i was meeting with my GI specialist again when she mentioned the idea of a feeding tube for me. she told me to do some research into it and send her a message if i agreed to it and she would wet up the next steps.

after spending most of the night and next day doing research, i sent her a message on Wednesday telling her i would be okay with a feeding tube. her nurse called me back an hour later, set up a consultation with the GI dietician for that Friday and i had my feeding tube placed the following Tuesday.

at the time i am writing this, i’ve had a feeding tube for four months and on a bad weeks i only throw up 3-4 times where as most weeks it’s once or twice. once we found a formula that works for me, while still feeling hungry (my formula goes straight into my small intestines and bypasses my stomach), i had more energy and felt more alert.

my dietician and my GI specialist told me that my body was holding into every calorie it could get from the little bit of food i could keep down making me feel sluggish and icky. but now that i’m getting proper nutrition, i’m realizing how much better i feel.

one of the hardest things for me to get used to since getting sick has been my dependence on medication to function. sure, growing up i took antibiotics when needed and allergy medicine but nothing to the extent i take now. you see, since getting sick i have had to increase my daily meds tenfold. anti-inflammatories, breathing medications, heart medicine, and let’s not forget the important pain medications that allow me to function. all too often i am frustrated by all of the medicine but lately i have been trying to reframe things into a love letter of sorts.

thank you vitamins for your work in keeping my body healthy. my body is deficient in several of you so i’m grateful for the pills and liquids that replace the much needed nutrients into my system

thank you mood medication for your work in keeping me sane. from fighting off PTSD and depression to combating my OCD i’m grateful that not only do you work but you work well. i would be a crying ball of fear without you.

thank you anti-inflammatories for your work in reducing the inflammation ravaging my body from my yet to be diagnosed autoimmune disease. you keep my hands functioning and help reduce my pain.

thank you pain medications for your work in making my life manageable. without you, i wouldn’t be able to walk or even sit for long periods of time. you keep my headaches down and hyper-mobile body functioning.

thank you heart medicine for your work in regulating my heart rate. without you, my heart would beat too fast, tiring out and making me dizzy and feeling weak. thank you for keeping everything in a normal rhythm.

thank you breathing medicine for your work in allowing me to breathe freely. my lungs are grateful for your ability to increase their capacity to hold air. thank you for your part in allowing me to sit outside in the sun or walk with my dog.

thank you digestion medicine for your work in not only keeping my reflux down but keeping nausea and vomiting at bay as well. you play so many roles with helping me keep food in and helping food digest properly.

thank you sleep medicine for your work in allowing me to rest. my word for 2022 is rest and you play a large role in that. you allow me to slow down my mind and breathing to drift off into slumber even on the worst anxiety nights.

thank you anti-virals for your work in keeping my virus load low. you allow me to live a normal life without fear of viral outbreaks. while you aren’t a cure, you do keep my viral load virtually undetectable meaning i’m less likely to transmit any viruses to a partner. thank you

having a chronic illness and two shunts means any ED visit can quickly turn into an admission so i have learned to have an ED go-bag packed. i keep everything in a book bag so it’s easy to grab and go. a few things are packed at the last minute but i’ll mention those things separately.

in my book bag you can find:

– a toiletry bag (inside the bag i keep my hearing aid batteries, hearing aid case, essential oils, deodorant, toothbrush, lotion, roll of paper tape, toothpaste, CBD cream, and rosary).

– 4 pairs of grippy socks

– 6 pairs of underwear

– packing cube to hold the underwear and socks

– a t-shirt and pajama pants

– external charge bank and extra long phone cord (with wall adaptor)

– medical bag (you can see what is inside this here)

– voltaren anti-inflammatory gel

– extra single wrapped masks

a few items i pack at the last moment. three of those things are my travel diffuser, disabled placard, and Ian (my teddy bear i’ve had for years). i also pack my wallet, keys, phone, and either my iPad (and charger) or coloring books and colored pencils.

so i have an allergy. to what you might ask, and my answer is a bit complicated. you see, besides certain medicines and the covid vaccine, we aren’t quite sure what i’m allergic to. sometimes i break out into hives for no reason and often i find my entire body so incredibly itchy that i want to scratch my skin off. so now, i carry this epi-pen medical case with me wherever i go and here’s what’s in it.

i chose the bright yellow case (**link does not generate money for me**) because i wanted something that was easily recognizable so it would be easy to find in a purse or book bag. the front is really simple and it holds a lot.

the back of the case has a stitched on plastic card case where i keep and extra copy of my insurance card and my medical alert plate. this is actually my old medical alert plate as my new one looks slightly different and has more information engraved on it. this way, if i were to go into an anaphylactic reaction, EMTs would have the information they need.

now to get into the contents of my kit. inside my kit you will find:

– 2 epi-pens

– 1 epi-pen trainer (i like to make sure people i’m around often know how to use my epi-pens)

– pepcid 20 mg tablets

– fingertip pulse oximeter

– anti-itch cream

– hand sanitizer

– albuterol inhaler

– hearing aid batteries

– liquid Benadryl

i love that everything fits in the case, including my epi-pen trainer. it gives me such a sense of relief knowing that i have everything i need for an allergic reaction in one easily accessible place.

after being dropped off at ER #2, i expected a long wait in the ED before seeing a doctor, but surprisingly they brought me back fairly quickly. at this point, i was still nauseous and dizzy so the nurse started an IV while the resident came in to talk to me.

“i think i have Chiari malformation,” i stated before listing off my symptoms to the young resident. headaches, dizziness, nausea, vomiting, numbness and tingling, being off balance, blurry vision, and muscle weakness.

“i doubt you have it,” he quickly said, “‘it’s very rare.” despite my extreme headache, i told him i wanted to see the attending and i stopped talking. to be honest, i stopped talking because talking was getting hard for me as it increased my headaches but it served another purpose of getting the resident to go get his attending.

“‘he’s right. it is rare, but we’ll run some tests and see what’s going on, including imaging.,” said the attending. i instantly liked her and felt like everything would be okay- no matter what the tests showed.

a CBC with differential, CMP, EKG, CT, MRI brain, MRI cervical spine, and urinalysis later, the attending came in and told me that neurosurgery would be in shortly to see me. neuro- meaning brain and surgery meaning well, surgery. shit. i was right, i thought.

“Chiari 1 malformation with the cerebellar tonsil lying 1.0cm (10mm) below the foremen magnum,” read my reports.

a neurosurgery crevice to came in and told me they were going to give me a few weeks worth of a medication to try before i met with a neurosurgeon in clinic within the next few weeks. i started 500mg of Diamox twice a day and was to follow up with neurosurgery two weeks later.