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!
Another wonderful news story spreading awareness about ME,POTS, and SaraSpins!
This so great!
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!
My exercise prototcol began as:
5 minutes on recumbent bike (keeping heart rate at 130bpm or below) with diaphragmatic breathing (in the nose, out the mouth)
5 minutes stretching
5 minutes on rowing machine (keeping heart rate at 130bpm or below) with diaphragmatic breathing (in the nose, out the mouth)
5 minutes stretching
I increased my workout by 1 minute on each machine each time I exercised, until I reached 45 minutes combined!
I have exercised an average of 5 days a week. I have not gone everyday because sometimes my body needed a break. The first five minutes were difficult but I kept on chugging along. Today I reached 22 minutes on the recumbent bike at level 10. I burned an average of 100 calories. On the rowing machine, I exercised for 22 minutes straight. I rowed over 1500 meters, and burned 29 calories. When I was titrating up the exercise protocol I would split up my minutes accordingly in to 3 sets on the rowing machine. Today I took the jump, and rowed non-stop for all 22 minutes!!
I have also lost six lbs, gained tons of arm muscle, built endurance, toned my thighs, and can fit into old clothes from before I got really potsie and gained weight. 🙂
I can’t believe the progress I have made in just under a month! I am hoping to work on more core exercises in the future, and get back into running at some point!
Leave a comment below on your favorite exercises or programs/protocol that has worked for you!
I want to share with you a new organizing/labeling tip! I have been using pink duck tape and a black thick sharpie to label “homes” for items around the house. I like using the duck tape because it sticks, and the color is bold. The black sharpie contrasts nicely with the pink so that is it easy on the eyes. My goal is to make everything plain, to the point, accessible, and easy for every family member in my household. This eliminates the possible excuse of “I don’t know where it goes” and others like it; when we are asked, told, or instructed to put away items. It is easy and inexpensive!
So far I have labeled our linen closet, pantry, and other daily used items in our house. It has made tidying much easier! Feel free to comment below! What do you use in your house to organize? Do you have a labeling system? What is your favorite way to organize?
Below are examples of my labeling system: