I love hard. I feel hard. I fight hard for what I want and what I believe in.
I wear my emotions on my sleeve. I am a worry wart. I have learned to adapt. My family is everything to me. I love to be goofy. I believe that laughter really is the best medicine.
I will be a mother one way or another. It is my greatest dream.
I live my life primarily by three quotes:
If it is to be it is up to me.
Be miserable. Or motivate yourself. Whatever has to be done, it’s always your choice. ~Dyer
In three words I can sum up everything I’ve learned about life. It goes on. ~Robert Frost
Who am I not?
I am not Ehlers-Danlos Syndrome.
I am not Postural Orthostatic Tachycardia Syndrome.
These are now a part of my life but they will never define who I am.
This is my life as a zebra.
What is POTS?
POTS, or Postural Orthostatic Tachycardia is a type of Dysautonomia.
According to the Dysautonomia Information Network,
“Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.”
Furthermore, according to the Dysautonomia Information Network,
“Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body’s inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.”
What is Ehlers-Danlos Syndrome?
According to the Ehlers-Danlos National Foundation,
“Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.”
How Does EDS affect me?
I was diagnosed with type II EDS by two geneticists and one EDS specialist/Sports Medicine Doctor. Type II EDS basically means that I have extreme joint hypermobility, and mild skin involvement. The following are the body systems that are affected by my EDS…
- Joint Pain, subluxations, dislocations~especially my back, neck, ribs, hips, and shoulders.
- Mouth~Jaw with TMJ and dislocations, and gum sensitivity.
- Gastrointestinal~I have slow gastric emptying, on and off gastroparesis, and IBS due to the stretchiness of the connective tissue in my GI tract.
- Skin~Stretchy and velvety skin, I bruise easily, and I have epicanthal folds.
- Autonomic Nervous System~Dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome (POTS), due to the stretchiness of my blood vessels. Dysautonomia is a chronic disease of the Autonomic Nervous System.
- Chronic Fatigue, headaches, anxiety, and depression
At this time, the types of specialists I see to manage my EDS (and POTS) are:
- Ehlers-Danlos Specialist
- Cardiac Electrophysiologist
- Sports Medicine/Orthopedist
- Physical Therapist
- Pain Management/Prolotherapy Specialist
- GI Motility Specialist
- Family Practice Physician
What was I tested for before my diagnoses?
- Multiple Sclerosis multiple times
- Myasthenia Gravis
- Muscular Dystrophy
- Mitochondrial Disease
- Nutritional Deficiencies, Electrolyte Imbalances
- Lyme Disease
- Churg-Strauss Vasculitis
- Thyroid Diseases
- Other various autoimmune diseases
- Celiac Disease
- Every Stomach Disorder/Illness/Disease Imaginable
1. Medical Stuff:
Slow on the medical front this week! I still need a new neck though!
- 1 day of PT
- 2 days of Home Rehab
- I received the book, When Bad Things Happen to Good People from Dr. Grubb.