Today was better than average in terms of pain, but pretty much spent glued to the couch. I've been bingeing the BBC series "Land Girls" about British women working on the countryside in World War II. I love the hats and coats. I would love to inject my wardrobe with inspiration from 1940s women's outerwear. So classy.
Today I found out that I HAVE THE MOST AMAZING FRIENDS. The C family came over to visit me and to hang out and give me lots of cuddles and food. It was so fun to hang out and color with D and E, who wore their Halloween costumes and looked quite snazzy as a cat and a tiger. My fridge and freezer are packed with chili cooked with superfoods and love by C and S. I am plumb tuckered out after our time together, but so deeply moved by the C family's generosity and kindness, and just their ability and willingness to be present in the midst of my feeling crummy. We laughed, we ate, colored, we pounced on furniture. Feeling very loved.
love & spoons,
emma
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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. :)
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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. :)
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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
Blog Archive
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2019
(51)
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October
(28)
- Happy Hallowinter!
- "A New Day Has Come"
- Brace for Impact
- Sluggish Monday
- Sleeping At Last - Enneagram-Inspired Music
- Forever Endeavor
- All the Hugs
- Exploring Options
- End Ableism
- The Lamps Have Been Canonized!
- "Somehow I Manage" by Michael Scott
- My 29th Birthday: "Yes, and"
- Finding Myself in Limitation
- Chicken Seizure Salad
- Shopping Spree
- It was the Best (Buy) of times, it was the worst o...
- Brain Fog on a Log
- People I Mix Up, Part 1 of Many
- Grace Glides, in Life and Dance
- Well We Tried
- Clouds Roll In
- Wildflowers
- Brighter Day
- I Am Resilient
- Thank You For Being A Friend
- Candles on a Whim
- The World's Greatest (Dental Patient)
- Take a Buzzsaw To My Elbow, Please
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October
(28)
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
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