ABOUT

About me … and what has been going on …

Here is a little background about me.

So I wouldn’t necessarily say I’m a blogging or even sharing kind of person, but I feel the need to share my story now.

I have always been a sickly kind of person. If anyone would catch a cold at school, I’d be the next person to get it. I grew up just used to this and used to not feeling well and being in pain. It was my normal. However, in the last 10 years I have become increasingly more sick and fatigued, which eventually resulted in me passing out and getting a pretty bad concussion on my birthday in 2019. This altered my life and ever since then I have experiencing worsening health. I tried to ignore it and chalk it up to my lifetime of not feeling well, but then things took a very scary turn in November 2023 where I begun visiting the hospital more times than I can even remember and was eventually hospitalized for SIRS. Ever since then, I’ve had to make some tough decisions and have been trying to stay strong to figure out what is wrong with me.

So here we are, in present day. On this journey, we all call life, trying to figure out what it is that is making me so sick and unwell. I plan to use this blog mostly as a therapeutic tool for myself to share my thoughts but also to spread awareness about rare conditions, being your own advocate, and even tips for the U.S. healthcare system. I’m sure as I write, other thoughts about life, love, work, and more will pop up. So please bare with me and enjoy a little peak into my mind and life.

Up to date medical information…

Doctors I have seen so far:

  • Gastroenterologist
  • Primary care physician
  • Gynecologist
  • Dentist
  • Ophthalmologist
  • Cardiologist
  • Otolaryngologist (ENT)
  • Naturopathic doctor
  • Neurologist
  • Dietician
  • Psychiatrist
  • Therapist
  • Endocrinologist
  • Dermatologist
  • Allergist
  • Colorectal surgeon
  • Physical Therapist
  • Rheumatologist
  • Pelvic pain specialist
  • Electrophysiologist
  • Geneticist

Tests / procedures I’ve had so far:

  • Colonoscopy
  • Endoscopy
  • Holter monitor
  • Brain MRI
  • Brain CT
  • Sinus CT
  • Abdominal CT
  • Echocardiogram
  • Bloodwork (ANA for connective tissue disorders, rheumatoid factor, cyclic citrullinated peptide antibody, complete blood count, …)
  • Chest x-ray
  • ECG
  • Fecal testing
  • 72 hour fast
  • Sleep apnea test
  • Hearing test
  • Videonystagmography (VNG)
  • Anorectal manometry
  • MR Enterography
  • MRI with defecography
  • Temporal bone CT
  • Wrist x-ray
  • Hand x-ray
  • Mesenteric duplex ultrasound
  • Hand ultrasound
  • In office sleep study
  • Tilt table test
  • Hydrogen breath test
  • Allergy testing
  • Septoplasty and bilateral turbinate reduction surgery
  • Genetic saliva test

Emergency room visits:

  • I have now visited the emergency room 16 times and have stayed there twice both for 2 nights and 3 days. I have also spent 9 days in an in-patient mental health facility.

What I have been diagnosed with so far:

  • Chronic
    • Postural Orthostatic Tachycardia Syndrome (POTS)
    • Polycystic Ovary Syndrome (PCOS)
    • Irritable bowel syndrome (IBS)
    • Vestibular migraines
    • Anxiety
    • Depression
  • Active
    • Advanced physiological tremor
    • Dyssynergic defecation
    • Small anterior rectocele
    • Tear in my right puborectalis muscle
    • Hemorrhoids
    • Tarlov cysts
    • Eczema
  • Resolved
    • Systemic Inflammatory Response Syndrome (SIRS)
    • C. difficile
    • Small intestinal bacterial overgrowth (SIBO)
    • 2 colon polyps (9mm and 3mm)
    • Esophageal ulcer
    • Levator syndrome
    • Turbinate hypertrophy
    • Nasal septal spur deviation to the left

Symptoms:

  • Ongoing
    • fatigue
    • dizzy / light-headed
  • Improving
    • brain fog
    • headache / migraine / head pressure
    • allergies
    • tachycardia
    • weight fluctuations
    • diarrhea / constipation / abdominal pain / nausea / bloody stool
    • facial flushing and swollen face
  • Resolved
    • dehydration
    • tremors
    • irregular periods
    • cold hands / feet
    • shakes / muscle spasms / muscle tightness / weakness
    • double vision
    • visual hallucinations
    • heart palpitations
    • yellow/orange stool
    • joint pain / bone pain / muscle pain
    • light sensitivity
    • shortness of breath
    • hives / swollen and red hands / eczema / skin bumps

Medications:

  • Still taking:
    • Ivabradine (daily)
    • Amitriptyline (daily)
    • Metformin (daily)
    • Probiotics (daily)
    • Vitamin D (daily)
    • Fish oil (daily)
    • Vitamin B2 (daily)
    • Magnesium glycinate (daily)
    • Paraguard IUD (24/7)
    • Buspar (as needed)
    • Tylenol (as needed)
  • No longer taking:
    • Benefiber (for diarrhea and constipation, didn’t work, stopped)
    • Miralax (for constipation, made me dizzy, stopped)
    • Nortriptyline (for diarrhea and constipation, didn’t work and had bad side effects, stopped)
    • Dicyclomine (for diarrhea and constipation, sort of works and made me dizzy, stopped)
    • Wellbutrin (for suspected depression, gave me a lot of energy for a little while then started causing increased heart rate and made symptoms worse, stopped)
    • Zoloft (for anxiety, made me feel like a zombie and I couldn’t even function and also increased anxiety, stopped)
    • Pristiq (for what they thought was anxiety, had really bad side effects like migraines and felt super out of it, stopped)
    • Xanax (as needed, don’t really take)
    • Ativan (as needed, don’t really take)
    • Vancomyacin (for c. difficile, 1 round)
    • Dificid (for c. difficile, 1 round)
    • Metronidazole (for BV, 1 round)
    • Xifixan (for SIBO, 2 rounds)
    • Tizanidine (daily, helped muscle tremors and stiffness but ended up causing increased shakes when not taking and anxiety, stopped taking everyday)
    • Valium suppositories (were very painful and left my butt feeling super sore, stopped)
    • Propranolol (allergic reaction, got super hot and facial flushing and dizzy and swollen, stopped)
    • Metoprolol tartrate (not feel good all day long, felt super out of it, stopped)
    • Cromolyn sodium (TERRIBLE migraines, sore throat, difficulty swallowing but did improve the color of my poop from yellow / orange to a normal brown and improved the consistency of the poop, but stopped because of the really bad side effects)
    • Allegra (4 per day, light-headed, dizziness, stopped)
    • Z pack (for sinus infection)
    • Cyclobenzaprine (helps with the stomach muscle spasms but makes me shake and is kind of an upper, stopped)
    • Librax (not good, stopped)
    • Allegra (not good, stopped)
    • Augmentin (for sinus infection)
    • Invega (not good, stopped)
    • Rexulti (not good, stopped)
    • Olanzapine (helped but did have side effects, not needed anymore)
    • Zyrtec (makes me sleepy)
    • Metoprolol succinate ER (too many adverse side effects)
    • Toradol (no longer needed)
    • IB gard (no longer needed)
    • Sumatriptan (no longer needed)
    • L-glutamine (no longer needed)
    • Abilify (no longer needed, caused akathisia)
    • Lamictal (no longer needed, made me feel super out of it)
    • Semaglutide (didn’t really work and made me fatigued)

“I wish none of this had happened.” – Frodo

“So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.” – Gandalf

https://www.bookitlist.com/entries/go-on-lord-of-the-rings-tour