Sara and her sister have been diagnosed with the same condition that I have. Sara and Sara Spins her organization helped raise money for a wheelchair for me when I needed it to get to class in school. Sara currently uses a wheelchair anytime she is out of her home and her younger sister just got diagnosed. It has almost been one year since I went to the treatment center and I have never been better. Please consider giving to this fund and help change these girls lives! Thanks so much and more to come soon!
I am terribly sorry that I have not updated for quite some time. I have traveled quite a bit and have wonderful news to share!
This post will be a list of goals and milestones that I have reached. I will expand on each goal in its own post!
Order of Milestones:
May 6th-17th 2013 Initial two-week expedited treatment: I left center at 70% improvement (I flew down in my wheelchair and on the trip back home I pushed my wheelchair with my suitcases in the seat)
June 6th 2013: First (0) on symptom chart!
June 8th 2013: Wean off Mestinon (took 9 days)
June 14th 2013: Completed exercise protocol goal of 22 minute workout on both recumbent bike and rowing for total of 44 minutes of exercise
June 16th 2013: Start weaning off Midodrine (took three weeks)
June 18-23 2013: Trip to NYC and (flying without wheelchair)
June 21st 2013: Rented bike and rode 6 miles all around Central Park in under 2 hours! 🙂
June 24th-31st 2013: Vacation and 2 days of rest from NYC trip
July 1-5th 2013: Follow-up week at POTS Treatment Center in Dallas, TX (Due to the 4th of July I decided to come for 4 sessions instead of 5. I did not want to double up on one day because I did not want to over do it. ) I left the center at 90% improvement!
July 8th 2013: Personal decision to stop several medications ( Florinef, Glycopyrrolate, Pro-biotic, Omeprozole, Flexeril,cephalexin) 0 adverse effects 🙂
July 19th 2013: Take college make-up course exam and PASSED!
July 20th 2013: 95% Improvement. I finished my school course and eliminated a number of unnecessary medications. This sounded like it was worth 5 percentage points to me! 🙂
July 27- August 4th 2013: Vacation to visit family. 3 1/2 hour car ride with 4 cousins under age 8. Hadn’t been able to handle that motion and stimuli for 1.5 years!
August 6th 2013: Four months free from syncope and oxygen depletion induced tremors!!!!!
August 8th 2013: Driver’s Permit Renewed
August 12th 2012: Wisdom Teeth removed (all four) So far a wonderful recovery!Summary: I have one week until I move back and start my 2nd year at college! I am currently at 95% recovered & once I get my license I will move it up to 100%. Then I can only improve more! I have improved emotionally, physically, mentally, and spiritually more than I ever thought possible during these last four months! I will NOT be bringing my wheelchair to college this semester. I have started to run again. (small amounts usually .5 to 1 mile a week) This is still HUGE for me!
Here are some milestones that are tentatively in place!
August 19th 2013: My 19th Birthday
August 20th 2013: My Driver’s Test
August 21st 2013: Drive up and move back into school!
August 26th 2013: Start 2nd year of college!
October 25th 2013: Aruna 5k at UC!
Thanks again for reading and sending me comments! I know this update is long over due but I hope that it helps you on your path to healing!
This is my video from the Initial two-week treatment in Dallas. This should give you a better understanding of the program. 🙂
I am the second video in the playlist. Called 18year old college student
Below are multiple PDF packets of information I have scanned from the POTS treatment center. This is the basic information regarding how they treat and about the treatment as well as an elementary overview of the nervous system. I will get into more depth about each of these topics in the future.
Introduction to POTS Treatment Center: biofeedbackinfoptc.pdf
Cognitive Behavioral Therapy (retraining thoughts) :CBTInfo
Water: water benefits
Nervous System Overview: NervousSystemBasics
Home Program Packet: HomePrgmInfo
Temperature Sensor Packet: Temperature Packet
Documentation Templates:TemplatesPTC This includes food lists, exercise protocol, example of daily schedule, natural sleeping aids, and other recommendations as well as templates for tracking your progress.
Please leave comments if you have questions. I will expand greatly on each topic in the coming days! Enjoy!
I went to the POTS Treatment Center on May 6th for two weeks. I will be sharing my story in later posts. If you go to the website you can learn the basic information regarding this center. It has been the best decision I have made regarding my health. I urge you to read and research!
Here is the link:http://www.potstreatmentcenter.com
More to come soon,
I beat my record of exercise and I have finished my first month of treatment! 🙂 I can’t believe the progress I have made!
Today I did my 34 minutes of exercise that is on my exercise protocol!
That is 17 Recumbent Bike & 17 Rowing Machine !
After my required protocol was complete I was not feeling tired at all so with the help of my dad I tried various other machines for core, arms, legs etc…
That led to 23 extra minutes !
So my total exercise at the Gym today was 57 Minutes! I haven’t been able to exercise to that degree with that high of a success rate! I did not experience any symptoms and exercised long enough for the endorphins to kick in!
One MONTH ago exactly I started treatment! Before this I could not workout in a gym, because I was too fatigued to make the trip. Working out at home was hard as well because I would become symptomatic with any type of exercise. Never give up hope! I have made incredible progress! I never would have thought in a million years that I would be able to do this much exercise on a regular basis.
This is the third day in a row that I have gone to the gym and completed my required workout! Monday 30, Tuesday 32 & Today 34 + bonus 23 minutes!
I haven’t had three days of exercise consistency in probably my entire life! It feels amazing! A big shout out and thank you to the POTS Treatment Center for giving me the tools and training to heal my body! Thank you to everybody who has helped me along this journey! You are all gems!
Well thats all for now. Talk to you all soon!
Foods in Burgundy are best Foods in grey are great substitutes for variety
Purple Grapes, all berries
Lemons, Grapefruit, Tangerines, Limes, Kumquats
Red watermelon, pink Grapefruit, persimmon, strawberry, guava
Swiss Chard, mustard/turnip greens, romaine, bok choy
Brussels sprouts, cabbage, collards, kale
Sweet potatoes, carrots, orange bell pepper, butternut squash
Ground Flaxseed, wheat germ, brown rice, couscous, yellow corn, wheat, wild rice, barley, quinoa, kamut
Skinless chicken breast
All beans and lentils
Sunflower seeds, pistachios, pumpkin seeds, almonds
Soymilk, soynuts, edamame (I personally use regular milk because I am not a fan of soy milk)
Canned albacore tuna, alasken halibut, sea bass, clams
Green or black decaf