This tumblr is meant to be a gathering place for those who suffer from Fribromyalgia/CFS and to provide fellow sufferer's with information about the disease. It also focuses on promoting positive energy, as well as learning ways to alleviate pain and improve your life! Please drop any information or questions regarding Fibromyalgia/CFS in the ask box!
Hello Tumblr, Today is Rare Disease Day. It is a holiday for me about celebrating the fact that I am alive. I suffer from a type of Dysatuonomia called Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (HyperPOTS). I also live with Mast Cell Activation Disorder and Intestinal Failure. It took me 10 years to be properly diagnosed, in that span of time I have had 11 major surgeries and 11 episodes of Sepsis (which has a 40-60% mortality rate). I should not be here. I am not sure what the odds are of surviving a condition when you had a 60% change of dying 11 times, but i am sure that is a miracle. Before diagnosis and proper treatment i was having about 3 seizures a week, was wheelchair-bound and dependent on pain medication and TPN. After being properly diagnosed and treated i am doing pretty good, i still struggle, but i can live like this and achieve all the things i want to do.
Dysautonomia and HyperPOTS is a disease of the Autonomic Nervous System which controls all base functions in the body (heart rate,blood pressure,digestion, sweating etc.) HyperPOTS is characterized by Orthostatic intolerance or the fact that when I stand up my blood pressure drops and I often pass out. It is also responsible for the fact that my heart beats extremely fast at rest, my legs look like a zombie from blood pooling, and i have a hard time concentrating at times because enough blood doesn’t get to my brain.
Mast Cell Activation Disorder: Is theabnormal response of mast cells to everyday stimuli. This means my body is essentially allergic to itself. http://www.patient.co.uk/doctor/Mastocytosis-and-Mast-Cell-Disorders.htm
Intestinal Failure: My Large intestine failed when i was 12 years old. I went through many surgeries to try to fix it but nothing worked and i was fitted with an ilesotomy bag at 17. I will be undergoing another surgery next month to get an ileo-anal pouch so that i can function more normally.
Have any questions? Inbox me!
[Caption: Health is never a measure of human worth, written over photos of Teddy Roosevelt, RJ Mitte, Miles Davis, Helen Keller, Franklin D. Roosevelt, Michael J. Fox, Stephen Hawking, and Lucille Ball]
- Teddy Roosevelt, former president with epilepsy and asthma
- R.J. Mitte, actor with cerebral palsy
- Miles Davis, jazz musician with sickle cell disease
- Helen Keller, writer and social activist with hearing and visual impairment
- Franklin D. Roosevelt, former president with polio
- Michael J. Fox, actor with Parkinson’s disease
- Stephen Hawking, physicist with ALS (Amyotrophic lateral sclerosis)
- Lucille Ball, actress with rheumatoid arthritis
When you use phrases like, “as long as you’re healthy” these are just a few of the people that your language is excluding. No one owes you health. Being healthy does not make you a good person, and being unhealthy does not make you a bad person. The state of a person’s body does not reflect their soul, their mind, or their worth as a human being.
Danielle Sheypuk, appeared this Fashion week on the catwalk, as a statement to how we need more inclusion and visibility of individuals with disabilities. One important quote: "I made the decision to cast ‘role models not runway models. It is so important to me that women have positive body image and are empowered in work and their life. My line makes dresses to fit women. We don’t make dresses that women need to fit into."
Don’t let the thought of meditating the “right” way add to your stress. Sure, you can attend special meditation centers or group classes led by trained instructors. But you also can practice meditation easily on your own.
And you can make meditation as formal or informal as you like — whatever suits your lifestyle and situation. Some people build meditation into their daily routine. For example, they may start and end each day with an hour of meditation. But all you really need is a few minutes of quality time for meditation.
Here are some ways you can practice meditation on your own, whenever you choose: