Pacing, timeless jazz, and a candy bar.
Swim, school, rest rest rest.
Thinking fondly of Krannert and the School of Music,
et
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A journal of my experiences living with POTS (Dysautonomia): getting through the pain and fatigue, fighting for a diagnosis, pressing on towards recovery. It's been trying in more ways than I would've ever imagined. But I know somehow it'll be better once it's all over. I'll be stronger on the other side. :)
Pages
The Disclaimer
I promise I'm not ignoring your comments. I just have a very limited amount of energy each day-- forgive me if I don't reply! You're really cool, and I thank you for all your kind words. :)
emmatrevor@gmail.com
emmatrevor@gmail.com
Long Story Short
After successfully starting my freshman year at U of I, I started feeling ill at the end of September 2008. I returned home in November thinking we could figure out my fatigue within a week or so. My education and my life were on hold for 4 years until I got back on my feet at the very end of 2012.
Thanks everyone for your thoughts, prayers, and comments. :)
**Scroll for more info!**
I am writing again now, in the fall of 2019, in the midst of a terrible flare-up.
Rollin' with the punches. Basically.
>>March 09 - at Mayo Clinic, Diagnosed!!! with Postural Orthostatic Tachycardia Syndrome (POTS)
>>December 2012 - completed biofeedback treatment through the POTS Treatment Center in Dallas, back on my feet.
Rollin' with the punches. Basically.
>>March 09 - at Mayo Clinic, Diagnosed!!! with Postural Orthostatic Tachycardia Syndrome (POTS)
>>December 2012 - completed biofeedback treatment through the POTS Treatment Center in Dallas, back on my feet.
>>September 2019 - relapse
Thanks everyone for your thoughts, prayers, and comments. :)
**Scroll for more info!**
What is POTS?
About Me
- Emma
- I'm looking forward to growing healthy again...hopefully sooner than later. :) My posts' titles are themed by month, silly stuff like cereal and cartoons. It makes a "health blog" a lot more fun to write. =D
I Have...
- POTS (Postural Orthostatic Tachycardia Syndrome)
- Orthostatic Intolerance (OI)
- Raynaud's Phenomenon
Labels
Informative Articles
Other "Treatments"
- *Tilt-training!
- Swimming & water aerobics - help circulation
- Compression stockings - helps circulation
- Lots of fluids
- High-sodium diet
- Tilting bed up
- Resting!
- Ginger ale for nausea
- Ice packs for muscle aches
- Stretching / Light exercises (as energy permits)
Followers
Posts
*Clarification!*
Hey there,
I do NOT have polio! Thanks for your concern.
The nickname "plagued polio child" came about as a loving joke from a family member who wishes to remain nameless. :)
I also do not have Bubonic Plague, "Black Death," or any other atrocious sickness caused by fleas and rats in 14th century Europe.
My alleged childishness, though, remains to be seen.
Love,
emma :)
I do NOT have polio! Thanks for your concern.
The nickname "plagued polio child" came about as a loving joke from a family member who wishes to remain nameless. :)
I also do not have Bubonic Plague, "Black Death," or any other atrocious sickness caused by fleas and rats in 14th century Europe.
My alleged childishness, though, remains to be seen.
Love,
emma :)
I've Seen...
- U of I Campus Physician (2)
- General Practioner
- Pediatrician
- Chiropractor (2)
- Neurologist
- Rheumatologist
- Ophthalmologist (2) / Optometrist
- Internist (Mayo)
- Cardiovascular Disease Specialist (Mayo)
- Dermatologist (Mayo)
- Gastroenterologist - Liver specialist (Mayo)
- Neurologist (Mayo) - DIAGNOSIS!
- Endocrinologist - POTS Specialist
- Cardio Electrophysiologist [2]
- POTS Specialist (Dr. Grubb)
- Neurosurgeon
- Gastroenterologist
I've Already Been Tested For...
- Food Allergies
- Celiac Disease / Gluten Intolerance (2x)
- Mononucleosis (at least 2x)
- Ulcer
- Thyroid Issues
- Heavy Metals
- Lyme Disease / Parasites
- Diabetes
- Anemia
- Hormone Imbalances
- Gall Bladder Issues
- Liver Issues
- Pancreas Issues
- Epstein-Barr
- Guillain-Barre
- MS
- Brain Tumor
- Spinal Tumor
- Lupus
- Lots of other Auto-Immune Diseases
- Porphyria
- Intestinal Permeability (LGS)
Symptoms, Past and Present
- Overall Weakness & Excessive Fatigue
- Difficulty Standing / Being Active for "Normal" Period of Time
- High Heart Rate & Low Blood Pressure
- Headaches / Migraines
- Lightheadedness, Fainting (once)
- Low-grade Fever (around 99-101 since mid-February)
- Flushed -- looks like sunburn
- Feeling Hot / Cold
- Short-Term Memory Loss / Forgetfulness
- Brain fog / trouble concentrating
- Difficulty falling / staying asleep
- Nightmares / Nighttime anxiety
- Nausea
- Dizziness / Vertigo
- Excessively Thirsty
- Congestion / Bloody Noses
- Phantom Smells (Smoke, Rotten Eggs, etc.)
- Hair Loss / Itchy Scalp
- Heart Palpitations (often fast and/or very painful)
- Chest Pain
- GI Problems
- Stomachaches / Intestinal cramps
- Involuntary twitching
- Tremors, Esp. Knees, Hands, & Jaw
- Numbness / Tingling in Extremities and Nose
- Joint Pain
- Backache / Back spasms
- Neck ache
- Shortness of breath
- Poor Vision, Esp. Peripheral
- Difficulty reading / moving eyes
- Itchy, Dry Eyes / Difficulty Producing Tears
- Pupils change size
- Sensitivity to Light & Sound
- Ringing / Whistling in Ears
- Earache / Inner Ear Spasms
- "Hyper-Vigilance" haha
A Few Acronyms...
- ANS - autonomic nervous system
- CFS - Chronic Fatigue Syndrome
- bb's - Beta blockers
- POTS - Postural Orthostatic Tachycardia Syndrome
- bp - blood pressure
- hr - heart rate
- rhr - resting heart rate
- bpm - beats per minute
yeah jazz. Good stuff.
ReplyDeleteGuess what? Erin is training to be an usher and a tour guide at Krannert. She's having fun and can't wait until you return!
ReplyDelete