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Three month update!

Hello everyone,

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!

POTS Treatment Center Information Packets

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

Diaphragmatic Breathing: Breathing &Breathing2

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!

Pots Treatment Center Website

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,

Abbey

Shapewear

1. Compression stockings

Brand: Jobst

Type: Relief

Gradient of compression: 20-30 mmhg

Size: small

Color: Beige

Website: http://www.jobst-usa.com/products/medical-legwear/relief.html

I was fitted for my compression stockings in May of 2012, at my local Gould’s Discount Medical.

Website: http://www.gouldsdiscountmedical.com

I wear these in the winter! They help keep me warm and help control my blood pooling. I have learned to wear these when I am standing only or sitting for short periods of time. When I sit, they buckle around my knees and can become slightly uncomfortable. Over all, they are easy to wear, wash, and are a great product!

2.Top

Brand: Maidenform

Type: Control It!

Size: small

Color: beige

Website: http://www.kohls.com/product/prd-885361/control-it-by-maidenform-camisole-12599.jsp

I bought this product at my local Kohl’s. I love this top because of the gradation of compression throughout. It is easy to wear under my clothes and the fabric is comfortable. It is easy to wash as well. I love that it helps with blood pooling and shaping my figure at the same time!

3. Tank and Short combo

Brand: Spanx

Type: Assets Red Hot Label

Size: small

Color: beige, black, reversible

Tank:

http://www.kohls.com/product/prd-1312594/assets-red-hot-label-by-spanx-flipside-firmers-4-way-tank-1873.jsp

Short:

http://www.kohls.com/product/prd-1312597/assets-red-hot-label-by-spanx-reversible-mid-thigh-flipside-firmer-1874.jsp

I also bought these at my local Kohl’s. I love this pair because they have so many combinations. The top features a black scoop neck, black v-neck, beige scoop neck & beige v-neck depending on what color and side you wear in the front or back. The material is so comfortable and easy to wear. The bottoms can be beige or black and you can also switch which way you put them on. After a few wears your body will mold to the material and a distinct front and back will form. They are somewhat pricey, but durable and worth the investment. I will probably own these for the next 20 years.

5. Shorts

Brand: Maidenform

Type: Flexees, Fat Free Dressing

Size: Small

Color: Black, Beige

Black:

http://www.kohls.com/product/prd-684161/flexees-by-maidenform-fat-free-dressing-thigh-slimmer-1255.jsp

Beige:

http://www.kohls.com/product/prd-684161/flexees-by-maidenform-fat-free-dressing-thigh-slimmer-1255.jsp

These were the first pair of shape wear shorts I purchased. These were also bought at Kohl’s. I have had these for one and half years. They are still in great condition. The material is comfortable, but the waistband can be binding at times. The lace at the bottom can also be itchy against my skin and it leaves imprint markings. The lace however, adds a classy, sexy touch! I choose them in beige and black so that I could wear them with most items in my closet. I still wear them on occasion.

Ending Comments

I also wear leggings & bike shorts as part of my every day wardrobe. These do provide some compression as well as style! If you are interested in looking into compression/shape wear these are some great basics. As a reminder, one needs to be fitted for compression hose, and speaking with your doctor can help. Sometimes you can get a prescription for the hose and in turn, may help with the cost.

I wish you the best on your shape wear hunt! Comment below on your favorite shape wear/compression items!

New Workout Record!

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!

Post workout pic

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!

Food List From POTS Treatment Center

Foods in Burgundy are best Foods in grey are great substitutes for variety 

Blueberries

Purple Grapes, all berries

Oranges

Lemons, Grapefruit, Tangerines, Limes, Kumquats

Tomatoes

Red watermelon, pink Grapefruit, persimmon, strawberry, guava

Spinach

Swiss Chard, mustard/turnip greens, romaine, bok choy

Broccoli

Brussels sprouts, cabbage, collards, kale

Pumpkin

Sweet potatoes, carrots, orange bell pepper, butternut squash

Oats

Ground Flaxseed, wheat germ, brown rice, couscous, yellow corn, wheat, wild rice, barley, quinoa, kamut

Turkey

Skinless chicken breast

Beans

All beans and lentils

Walnuts

Sunflower seeds, pistachios, pumpkin seeds, almonds

Yogurt

Kefir

Soy

Soymilk, soynuts, edamame (I personally use regular milk because I am not a fan of soy milk)

Salmon

Canned albacore tuna, alasken halibut, sea bass, clams

Tea

Green or black decaf 

My Journey with POTS: Part 1

POTS: A History

Chapter 1. Common symptoms become Not so common

I was born  in suburb of Dallas.

I was born two weeks early and my only complication was having Jaundice. Jaundice is very common among babies. It meant that my liver was not fully developed and my skin had a yellowish tint. So I received daily blood tests for 17 days and was treated under a lamp to speed up the process. I came home after one day of observation and everything was completely fine.

I became big sister to Heath when I was three, and to Aaron when I was five. I also had a dog-named Keifer. I started Kindergarten at age 4. I was just a normal kid, living it up in the heart of suburbia, until age six.

Abdominal Pain

I never had recurring ear infections or nose bleeds and passed with flying colors at wellness checks. Then, at age six, I began to have intense stomach pain that would drop me to the floor. I had stabbing pain in my abdomen. I do not have a high pain tolerance but nevertheless, I was in pain.

By age seven, I moved from suburban TX to rural AR. It was quite an adjustment from affluent suburban Plano to a rural farming area with the closest mall being over two hours away. However, I adjusted very well and had the most excellent third grade teacher, Mrs. Poole. I joined the Girl Scout troop and joined my first sport team. I played softball in fourth grade. I was absolutely terrible but I made a lot of friends. I have always been a lover of all things pink and girly so I stuck to cheer and dance throughout middle school.

The abdominal pain was episodic and we couldn’t identify the triggers.

Over the next couple of years we tried the following;

  1. started me on Miralax to see if it was constipation pain
  2. milk of magnesia
  3. removed dairy from my diet to see if I was lactose intolerant
  4. heating pad for pain
  5. food diary
  6. diary of when an episode happened and possible causes
  7. ruled out appendix

By the time I was in fifth grade, the pain was coming quite frequently and we had no answers. So I went to the children’s hospital at age 10 and underwent a procedure that took pictures of my stomach and small intestine. Everything turned out normal, and the only thing they saw was a back up of fecal material.

At this point, my parents gave me Miralax on occasion to see if it helped. It didn’t so I just quit complaining because even the doctors said nothing was wrong. I have continued to have severe abdominal pain for many years with out a known reason or cause.

Carsickness: Headaches and Nausea

Beginning around age 10 I noticed that every time I would ride in the car I would get an instant headache and carsickness. I would become nauseous but never vomited. It happened every time I was in the car regardless if my brothers were riding as well.

My parents and brothers thought that I was just saying I had a headache to get them to be quiet during car rides. About this time I gained limited front seat rights and it reduced the headaches by a little.

However, since carsickness and associated headaches and nausea is common, it was passed off as normal. As a precaution the air conditioning was always turned up and my parents tried to keep the peace and quiet. But with two younger brothers, it is a struggle. It became so bad that we could never travel on curvy roads without feeling miserable. Sadly, we lived in rural Arkansas so avoiding hills and curves was nearly impossible.

Temperature Intolerance: 

For as long as I can remember, I was always cold. My dad is a heater, and Mom always got cold easily as well. I always used lots of blankets and had to bring a jacket to restaurants and movie theaters or I would freeze. My hands and feet were always freezing. We never thought of it as something serious because mom experienced the same symptoms.  I noticed that it got worse with my sweating.

Excessive Sweating: Just hormones or something more?

I was on the sixth grade cheerleading team. Puberty was beginning to rear its ugly head. I developed leg hair and wore my first bra. That is when the sweating began. At first it was just normal sweating and everybody was learning to use deodorant. Boys lost their cooties, and we were “in love” with the latest Disney channel hottie! Things were as normal as they can be for hormone raging pre-teen girls.

Once seventh grade began, I had smooth legs but I noticed that I would sweat even when I was just sitting in class. It was one thing to be sweaty at dance practice, but in history class?? Not so sure about that. I began to always carry a hoodie to class and I stopped wearing my “cute” clothes because I feared getting sweat stains. I told my parents, and they brushed it off as just a normal thing and all teens have it. After 3 months we began to try different deodorants. I tried every kind of clinical strength available OTC and tried to eliminate the fabrics that caused more sweat.

As a 13 year-old self-proclaimed “fashionista”, it was horrible to have to reduce my choices of clothing, in order to try and protect against sweat. So naturally, social events were becoming disastrous. And at 13, nothing can be worse than feeling left out and not fitting in. I couldn’t even raise my hand in class, and as a straight-A student, that was a problem! I began to do Internet research and Yahoo Answers became my best friend. I found a condition called Hyperhidrosis. It was over-active sweating of the underarms, hands, and feet. People suffered for many years of social neglect and the burden of having to change their shirt every few hours. It matched everything that I was going through. I began to wear black shirts because it didn’t show and I couldn’t wear long sleeves unless it was a hoodie so that the stains wouldn’t show. Even short-sleeved t-shirts became a problem.

It didn’t matter if it was hot, cold, or a perfect 70 degrees; I was always sweating. Any slight temperature change in classroom-to-classroom rotation would always send me into the shivers.

At the end 7th grade, my mom took me to get my blood levels tested for hyperthyroidism. We received mixed results. One time it was a little high and the second completely normal. My GP suggested we try Certain-Dri a deodorant that I apply at night to help dry up the glands. I made me severely itchy and it burned so much that I couldn’t stand it.

So once again, I quit complaining because it was another normal symptom with no found cause. I reverted to stocking up on different deodorants and trying to trick my body by changing it every three days.

Menarche: PMS pains back with vengeance

Towards the end of seventh grade I also began menstruating. I was 5ft 6in and just hit 100lbs at Thanksgiving. I ate like a teenage boy but I was still very thin. Every time I got my period, the abdominal pains were worse. But now the pain I have had for years became masked under PMS cramps. I rarely missed school in 8th grade, but definitely felt worse during my period. The sweating and abdominal pain came in waves but it was still very prevalent.

At this point I had the following symptoms:

  1. Abdominal pain
  2. Frequent carsickness- instant headaches and nausea
  3. Excessive sweating
  4. Pre-menstrual issues (all previous symptoms intensified during that week)
  5. Heavy flow
  6. Low weight

I completed 8th grade in  AR and I moved to southern IN that summer. I was sad to leave my friends, but extremely excited about a new school and making new friends.

The move was great for me, especially since IN is flat so no more curves and hills!

More to come soon!