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Surviving and Thriving with Chronic Illness

Category: "Coping"

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Video: POTS - What Have We Been Missing? Part 3

Dr. Diana Driscoll discusses missing pieces of the puzzle for POTS and Chronic Fatigue Syndrome. Correct the underlying problem, don't just treat the symptoms! In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, POTS, Vascular abnormalities 53 Comments | View

Video: POTS - What Have We Been Missing - Part 1

The University of Houston College of Optometry welcomes Dr. Diana Driscoll as she discusses "POTS -- What Have We Been Missing?". Dr. Driscoll presents the role of abnormal intracranial pressure in many patients as the first clue that we are missing too much in this condition. Dr. Driscoll speaks as a patient and a mom of patients who were able to recover from disabling POTS. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, POTS, Vascular abnormalities 35 Comments | View

Video: POTS Care Opens!

The day has arrived! We are happy to announce the opening of POTS Care -- geared to help patients with Idiopathic POTS (often found with EDS, Chronic Fatigue Syndrome or Chronic Lyme disease). Dr. Diana, a former patient with POTS, is now part of a team helping those with this form of POTS that doesn't usually respond well to symptomatic treatment. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS 35 Comments | View

Video: The Driscoll Theory Validated!

Join Dr. Diana as she discusses how the experts in EDS, Joint Hypermobility Syndrome, and autonomic function ("POTS", dysautonomia, etc) speak about how treatment based on The Driscoll Theory results in definite improvement of patient symptoms! Have you been waiting to hear about validation of The Driscoll Theory? This will get you started in understanding the experiences of some of the top experts in the field. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Pain Control, POTS, Vascular abnormalities 22 Comments | View

Video: Your eyes and EDS - What is truth, what is myth?

Dr. Diana focuses on the ocular truths and myths related to collagen disorders, such as EDS (Ehlers-Danlos syndrome). Are we more prone to glaucoma or macular degeneration? What is up with this Dry Eye Syndrome? Are we candidates for LASIK? These questions and more are discussed, along with announcements about current and upcoming research and medication. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, POTS 14 Comments | View

Video: Hyperadrenergic POTS - Why so much suffering?

Dr. Diana, as patient, explains a few reasons why hyperadrenergic POTS patients suffer so much. POTS/dysautonomia involves many "invisible" systems that can be difficult to explain to doctors and loved ones. This video will help explain what is happening and what can be done to help the patient and those who care for them. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Pain Control, POTS 13 Comments | View

Video: RAW DaM Data!

Dr. Diana discusses the importance of getting a copy of your RAW data! Essential for rare disease and invisible illnesses. Thanks to my friends at www.ACMImimi.org for their great work with music and medicine! Direct link to their video on DaM Data is here: http://youtu.be/0gpk-fbfg4Y In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities 22 Comments | View

Video: Spoonie Relationships and Dr. Sharon

Dr. Diana and Dr. Sharon, psychiatrist and spoonie with EDS and POTS discuss relationships and Valentine's Day ideas. Relationships can be difficult for the healthy! Listen in for their discussion of our special challenges and hear some thoughts as to why traditions are still important in a relationship. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS 52 Comments | View

Video: Suicidal thoughts and depression

Dr. Diana discusses depression and suicide ideation -- two very common symptoms in dysautonomia and numerous invisible illnesses, including M.S., EDS, fibromyalgia, chronic fatigue or "M.E.", rheumatoid arthritis, lupus and endometriosis. Always reach out for help if you experience this symptom, and understand it is a reversible symptom. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities 14 Comments | View

Video: Clinical trial testing and Financials

Dr. Diana as Patient gives a status report for pre-clinical trial testing being offered (at no charge) for invisible illnesses such as dysautonomia and Ehlers-Danlos syndrome, chronic fatigue, fibromyalgia, chronic Lyme disease, RA and endometriosis. Financials for Prettyill are also disclosed. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, POTS, Vascular abnormalities 7 Comments | View

Video: Clinical Trials!! How to Participate

Clinical trial pretesting is STARTING ON OCT 9! No charge to you! Chronic fatigue (or M.E.), Multiple Sclerosis, Rheumatoid Arthritis, chronic endometriosis, Fibromyalgia, Dysautonomia with EDS (or joint hypermobility), Chronic Lyme Disease. Limited number of patients can be accepted; by appt only. Contact us today!!!! In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities 27 Comments | View

Video: My POTS is gone—was it angioplasty? Uh, no.

POTS, one aspect of dysautonomia is GONE for me. Working with the root of the problem (as opposed to treating the symptoms via salt-loading, etc) may be the key for many of us with dysautonomia (EDS, chronic fatigue, fibromyalgia, M.S., chronic Lyme, etc). Setting up clinical trials now. If interested, please send your contact information to "volunteers@Prettyill.com". If you'd like to help, please let me know! smile In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS, Vascular abnormalities 7 Comments | View

Video: A checklist for your symptoms!

Can you help complete this checklist of symptoms for us? We would like to get our plethora of potential symptoms in a peer-reviewed journal. This will help us with disability claims, dealing with schools, and getting out to physicians the extent of illness we can suffer. You can find it here: http://prettyill.com/resources/articles This is under the "Articles and Publications" section on the right-hand column of Prettyill.com. Thank you so much! Please spread the word! smile In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS, Vascular abnormalities 23 Comments | View

Video: This man fixed his own heart!

Tal has Marfans and explains how he used his engineering background to work with the medical field to repair his own aorta! If you want to hear the obstacles he had to overcome (not unlike a therapeutic optometrist creating new ideas about chronic illness!!), jump to minute nine. Inspiring!! In: Coping, Ehlers-Danlos 12 Comments | View

Video: Is it POTS or Dysautonomia?

Dr. Diana explains the difference between POTS and Dysautonomia, and encourages everyone to be precise when describing their symptoms. This may be a huge source of misunderstanding between doctors and patients. In: Chronic Fatigue, Coping, Ehlers-Danlos 25 Comments | View

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Resource Results

NOW COMPLETED: Gastroparesis and IBS Treatment Trial Sign Up Begins - Instructions here!

Instructions and information about signing up for the treatment trial for gastroparesis, chronic constipation, IBS, delayed gastric emptying (etc) as found in dysautonomia in Ehlers-Danlos syndrome, Joint Hypermobility syndrome, POTS, Chronic Fatigue Syndrome (or M.E.) and fibromyalgia. This is a PDF and you will need Adobe Acrobat to see it (free download).

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View | Studies

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, POTS

Should dysautonomia patients get the flu vaccine?

It’s a tough call for many of us—should dysautonomia patients get the flu vaccine? We often times will flare with symptoms after the vaccine, but is the flare worse than the flare we’d experience with the flu? It’s a decision each one of us grapples with every year! Here’s an abstract concerning this tendency to flare.

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View | Articles & Hand-outs

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, POTS

Patient Develops Dysautonomia When Struck by Lightning

A patient develops dysautonomia when struck by lightening. No one knows why he develops Post Traumatic Stress Syndrome! wink

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View | Articles & Hand-outs

In: Chronic Fatigue, Coping, POTS

Poor response to anesthetics in EDS Hypermobile type

Great for your doctors! This article states that anesthetics are less effective in EDS, Hypermobile form.

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View | Articles & Hand-outs

In: Coping, Ehlers-Danlos, Fibromyalgia, Orthopedic Issues, Pain Control

Salt linked to autoimmune diseases

One reason Dr. Diana is trying to find and treat the SOURCE of POTS / Dysautonomia . EDS/POTS patients are prone to developing a vast array of autoimmune disorders, including M.S., Rheumatoid Arthritis, psoriasis, etc. This article explains why the typical recommendation of salt loading may harm us (and our endothelium) in the long run. A MUST READ!

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View | Articles & Hand-outs

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities

The Driscoll Theory® Newly Revised is now Available for Purchase

After much delay The Driscoll Theory® Newly Revised is now Available for Purchase as a downloadable PDF. We decided a PDF was the quickest way to get this information to you. The PDF is not printable; however if there is enough demand we’ll see about producing The Driscoll Theory® as a book.  Click on the icon or link or icon to buy it now. Buy Now

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

EDS Today

A strong advocacy group bringing awareness, education and hope to the entire EDS community!

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

Potsie Mama

Great blog about POTS, EDS and family…making it all work!

Online Resources In: Coping, Ehlers-Danlos, Fibromyalgia, Pain Control, POTS

Illness Sucks but I find the Funny!

Dealing with a chronic (especially invisible) illness can be more than trying! Need a chuckle? I love this site to share some of our outrageous and silly moments. Enjoy!

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, Pain Control, POTS

ChronicRants.com/

Rants and raves by, for, and about those with chronic illness(es). Funny and informative!

Online Resources In: Coping

Poem to Dr. Diana from a Patient

Sweet poem of thanks to Dr. Diana from a patient and fellow spoonie. Uplifting and thoughtful.

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View | Articles & Hand-outs

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS

Mast Cells and Stress—A Psychoneuroimmunological Perspective

Organic Brain Disease and how it relates to mast cells and many chronic illnesses

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In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities

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