EDNF National Conference

Ehlers Danlos National Foundation 25th Anniversary Conference
Baltimore, MD

The conference is scheduled for the weekend of July 15, 2010. More info will be at the EDNF site as it becomes available. I think you have to be logged in to see that page; not sure.

I don't know if I'll be able to go or not. I sure would like to, but I absolutely can't stand flying anymore since all that TSA crap has been implemented. :(

Health Care Reform

Patient Advocates Cite Insurance Caps As Critical Difference in Senate and House Health Care Reform

Advocacy groups warn that Senate version of bill would not eliminate caps for millions of Americans

Washington, DC

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The National Organization for Rare Disorders and 46 other patient advocacy groups are warning that the Senate health care reform bill would not eliminate annual and lifetime insurance caps for many Americans, contrary to common belief. The groups say millions of people would still be vulnerable to loss of their insurance benefits if provisions from the Senate bill are adopted in the final legislation.

“This is a critical issue for patients with rare diseases, as it should be for all patients,” said Peter L. Saltonstall, NORD’s president and CEO. “As the House and Senate negotiate health care reform, we must keep in mind the central focus, to create medical security. Capping insurance payments, either on an annual or lifetime basis, can lead to substantial limits on medical care for patients.”

Saltonstall said NORD often hears from patients who are worried about being unable to afford their treatment or impoverishing their families if they should lose health benefits as a result of reaching a cap. For instance:

* A 24-year-old man with hemophilia anticipates that his lifetime medical benefits will be exhausted in about three years.
* The family of a 9-year-old child diagnosed with aplastic anemia at age 4 worries that he could exhaust his benefits very early in his life.
* Parents of a high school student stricken with life-threatening illness at age 16 worry about losing his insurance coverage, which has a $1 million lifetime cap.

NORD was one of 63 patient advocacy groups that sent a letter this week to Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) urging elimination of all annual and lifetime insurance caps. Advocacy groups also sent a letter to President Obama.

Many private insurance plans include annual or lifetime caps. Typical lifetime caps are in the range of $1 million or $2 million—a figure that can be reached relatively quickly by people with rare, chronic, or catastrophic diseases.

The patient advocates are urging that Congress adopt the House provisions on lifetime limits, which would eliminate such limits in all private insurance plans in 2010. This is in stark contrast to the Senate version of health reform, which would allow lifetime limits to continue indefinitely on existing plans.

Regarding annual limits, the groups urge adoption of the House provisions with one exception—that the final legislation incorporate a Senate provision restricting annual caps until the caps are fully eliminated in 2013 for new plans and 2018 for existing plans.

Advocacy groups joining NORD in urging Congressional leaders to adopt the House provisions on this issue include:

Acid Maltase Deficiency Association
Advocacy for Patients with Chronic Illness, Inc.
Alpha-1 Association
Alpha-1 Foundation
American Behcet’s Disease Asssociation
American Autoimmune & Related Diseases Association
APBD Research Foundation
Amyloidosis Support Groups
Aplastic Anemia & MDS International Foundation
Cicatricial Alopecia Research Foundation
COPD Foundation
Cystinosis Research Network
Dystrophic Epidermolysis Bullosa Research Association of America
Ehlers Danlos National Foundation
GBS/CIDP Foundation International
Hannah’s Hope for Giant Axonal Neuropathy
Hemophilia Federation of America
Hereditary Neuropathy Foundation
Histiocytosis Association
Immune Deficiency Foundation
Kennedy’s Disease Association
Lymphangiomatosis Foundation
MHE Research Foundation
Moebius Syndrome Foundation
National Ataxia Foundation
National Gaucher Foundation
National Hemophilia Foundation
National Marfan Foundation
National MPS Society
National Multiple Sclerosis Society
National Tay-Sachs & Allied Diseases
National Urea Cycle Disorders Foundation
Organic Acidemia Association
Osteogenesis Imperfecta Foundation
Paget Foundation for Paget’s Disease of Bone and Related Disorders
PNH Research and Support Foundation
Reflex Sympathetic Dystrophy Syndrome Association
Sarcoma Foundation of America
Scleroderma Foundation
Shwachman-Diamond Syndrome Foundation
Stevens Johnson Syndrome Foundation
The Myositis Association
Tourette Syndrome Association
United Leukodystrophy Foundation
Vasculitis Foundation
Wilson’s Disease Association

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CONTACT:

Diane Dorman
ddorman@rarediseases.org
202 588-5700 (office)
202 258-6457 (mobile)

Mary Dunkle
mdunkle@rarediseases.org
203 744-0100 (office)
203 482-9934 (mobile)

A request

For those of you on Facebook, would you mind voting for Ehlers Danlos Network Cares in the Chase Community Giving? That organization has very low overhead, and has worked hard to make it the current Round 2 (Top 100) of the giveaway. And earned $25,000 thus far. :)

They are trying to raise money for Ehlers Danlos syndrome (EDS) research via funding a mouse model for EDS type IV (Vascular), which is the type that greatly affects life expectancy.

There are 2 steps to the process:

First, become a fan of Chase Community Giving here

Once "become a fan" you are given 5 votes. This is the charity I am requesting that you vote for. And you have 4 votes left over to vote for 4 others. :)

Thank you very much.

More, from Ehlers-Danlos Network Cares:

The Issue

Could YOU have Ehlers-Danlos Syndrome (EDS)? EDS is a life-threatening, painful, crippling genetic disorder caused by faulty collagen. It weakens the connective tissue causing fragile skin, joints, ligaments, organs, and blood vessels. EDS is misunderstood, grossly misdiagnosed, and some 90% never receive a proper diagnosis in their lifetime. There is no funding for research. There are no treatments. There is no cure. Today, we are at the threshold of promising research that can change all this and offer those who suffer, HOPE. It’s estimated that 1,358,640 people are affected worldwide, and thousands die. Sadly, many are diagnosed at autopsy after catastrophic internal ruptures. Yearly, 30,000 children are born with bleak futures as they struggle with lifelong consequences due to EDS. Our HOPE is to continue to fund research, increase education/awareness, find treatment options, and save/improve lives. Help us find that cure. Thanks Chase for the opportunity and for YOUR vote!

The Plan

Our HOPE lies in our plans to fund vital medical research, increase education, and conduct pediatric outreach initiatives. Our organization is run solely by volunteers, allowing us to have a greater financial impact in all these areas. Our present research is being conducted at Johns Hopkins University. This is an extension of prior research on similar disorders that have shown certain therapeutic medications already approved have reduced fragility of the vascular system and prolong lives. There is evidence that the same process is at work in vascular EDS, and will yield the same results. The initial start-up cost is $100,000, and an estimated $200,000 per year for 3 years. Create educational and medical programs for the medical community to effectively diagnose, care for and treat EDS patients; Diagnostic charts inserted into Pediatric Medical Journals; Sponsor safe medical camps for our youth; School Medical packets, to increased understanding and public awareness.

The Outcome

Our HOPE is that this research will succeed so that people will no longer suffer or die from EDS; that an accurate EDS research model will be completed in 2010; that in 2 years, medication treatment trials, much like current Marfan trials, will begin, and by 2014, we will implement a revolutionary new treatment for vascular EDS. We HOPE that new spinoff research will uncover effective treatments for all types of EDS, and open doors for funding other sources of long-term research. We will consequently reach over 200,000 in the medical community who will benefit from new evidenced based publications to effectively recognize and manage EDS patients, optimize successful surgical outcomes, and improve the quality of life for the EDS community. These programs, as well as our pediatric initiatives, will be completed by 2011. In order to accomplish our long term mission and ensure our future, endowments will be established. Our job is to bring these goals to fruition. Lives are depending on it!

(Crossposted to my main blog)

Scientists Create Super-Strong Collagen

A team of University of Wisconsin-Madison researchers has created the strongest form of collagen known to science, a stable alternative to human collagen that could one day be used to treat arthritis and other conditions that result from collagen defects.

Hmmm wonder if that has any Ehlers-Danlos syndrome implications? Sounds like it might.

The lab website

Abstract of the paper: Stereoelectronic and steric effects in side chains preorganize a protein main chain. Matthew D. Shoulders, Kenneth A. Satyshur, Katrina T. Forest, and Ronald T. Raines (2010). Proceedings of the National Academy of Sciences USA 107, 559 - 564.

Rare Disease Day 2010

http://rarediseaseday.us/ is the site for folks in the USA. They want their partner organizations to participate in various ways, like sharing stories, etc.

Last year, for Rare Disease Day, I created a website/database where people diagnosed with Ehlers-Danlos syndrome could submit their stories. I announced it on the EDNF boards but there wasn't much interest from EDNF (never received the permissions form they were supposed to email), nor the members, nobody used it, and so I took it down.

It was an open source CMS site, if any geeks are reading. I've been a webmaster since 1995-96 (though my days of being a productive member of society are winding down thanks to POTS) so something like Drupal / Mambo / Joomla was easy-peasy. I haven't worked with those since, but I was impressed at how quick and easy those open source CMS were to customize/manage/secure.

Links:

(Circulation. 2008;118:785-791.) © 2008 American Heart Association, Inc.
Special Report
Report of the National Heart, Lung, and Blood Institute and National Marfan Foundation Working Group on Research in Marfan Syndrome and Related Disorders

Cell and Tissue Research, Volume 339, Number 1 / January, 2010
Cell interactions with the extracellular matrix (overview)

Researchers Discover a Way to Strengthen Proteins

Brittany Murphy Had Dysautonomia?

Brittany Murphy's half-brother has mentioned a genetic disorder as a possible cause of her sudden death at the age of 32. Sarah (?) at POTS Awareness (page has background music) posted that link on Twitter.

I'm not sure what to think of that. I'm not really "with it," & wasn't sure who Brittany Murphy was. Not really into current popular culture I guess. Found out she played the girl with chicken under the bed in Girl, Interrupted and was in 8 Mile so OK, I knew who she was then. She was a good actress & very young & it's sad.

The list of prescription medications found at her house included Propranolol, a beta blocker that is commonly prescribed for POTS and some anti-anxiety medications that are also typically prescribed for dysautonomia because SSRIs help regulate norepinephrine & the sympathetic nervous system.


Links:

Medications used to treat POTS

A review of postural orthostatic tachycardia syndrome - Sheila Carew, Margaret O. Connor, John Cooke, Richard Conway, Christine Sheehy, Aine Costelloe and Declan Lyons*

Happy 2010

Hope 2010 is a good one for you. :) I'm married to a jazz musician so we usually don't spend New Year's Eve together because that is a good night $$ for gigs. But last night, for the only the second time in over 20 years, we got to spend it together. (I had made him stay home for the millennium, haha, because I wanted to bring in the new century with him.) :) Come to think of it, our first date was on New Year's Eve & he was playing a gig so I hung out at a table and drank beer with his dad until he was finished playing haha.

Hope your 2010 is full of great things.

Random links:

It is thought that Conan Doyle was among the first to describe an inherited disease now known as Marfan’s syndrome.

COL5A1 Signal Peptide Mutations Interfere with Protein Secretion and Cause Classic Ehlers-Danlos Syndrome . PDF

Collagen Structure and Stability - MD Shoulders, RT Raines - Annual Review of Biochemistry, 2009 PDF

Motor Performance in Children with Generalized Hypermobility: The Influence of Muscle Strength and Exercise Capacity - Hanewinkel-van Kleef, Yvonne B. PT, MSc, PCS; Helders, Paul J.M. PT, MSc, PhD, PCS; Takken, Tim MSc, PhD; Engelbert, Raoul H. PT, PhD, PCS PDF

Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers-Danlos syndrome. Disability & Rehabilitation 2010, Vol. 32, No. 1 : Pages 1-7 abstract

Anxiety disorders and joint hypermobility syndrome: the role of collagen tissue, General Hospital Psychiatry, Volume 31, Issue 3, May-June 2009, Page 299 abstract

Bleeding in the heritable connective tissue disorders: mechanisms, diagnosis and treatment. abstract

The Matrix is a system, Neo.

Biological tissue’s ‘glue’ identified

Looks like the Center for Matrix Biology at Vanderbilt is also studying fibroblasts.

Collagen is in cells but is outside too - part of the extracellular matrix - is that correct? I'm trying to learn but it is pretty confusing:

Collagen is the most common protein in your body and there are many types of collagen.

The body's scaffolding - connective tissue - like blood, fascia, heart valves, bones, skin, veins, arteries, eyeballs, tendons, etc contain collagen.

My body makes messed up collagen because there's probably a messed up collagen chromosome.

There's chromosomes in every cell. In the nucleus, because that's where the genome is.

And evidently the genome wad in the nucleus would be 6 1/2 feet long if it was unfolded! That blows my mind.

I wonder if I have this all correct. I haven't had a biology class in decades. I'd like to understand how fibroblasts and collagen work and what exactly the extracellular matrix is.

Wish I could take Dr. Billy Hudson out to lunch and have him explain it to me haha.

***

My cardiologist recommended that I have an MRI with contrast on Monday - of my heart/aorta and stuff to check for aneurysms - but Blue Cross Blue Shield of Tennessee doesn't want to approve the procedure so it is canceled. The Cardiologist's office is still trying; I guess a Dr. was going to do a one-on-one with them this afternoon but I haven't heard any updates.

Ugh this sounds horrible

Sounds like it doesn't represent chronic pain or EDS very well. As if living with this isn't hard enough, thanks A&E for twisting the knife, eh?

Press release

A&E NETWORK’S MONDAY NIGHT ORIGINAL NON-FICTION SERIES RETURN BACK-TO- BACK FOR ALL NEW SEASONS ON NOVEMBER 30TH

EMMY-WINNING “INTERVENTION” DEBUTS EIGHTH SEASON AT 9PM ET/PT

NEW HIT SERIES “HOARDERS” RETURNS FOR A SECOND SEASON AT 10PM ET/PT

New York, NY, November 9, 2009 A&E’s 2009 Emmy Award-winner for Outstanding Reality Program “Intervention” and critically acclaimed “Hoarders” return for all-new seasons with back-to-back premieres on Monday, November 30th at 9:00 PM ET/PT and 10:00PM ET/PT.

The eighth season premiere of “Intervention,” features Linda, who after graduating from college found success working as an extra in Hollywood, achieving the glamorous life she always wanted. Linda’s dreams died when she came down with Ehlers-Danlos Syndrome, a rare disorder characterized by joint dislocations. Linda started taking Fentanyl, a painkiller 100 times stronger than morphine. As her painkiller use escalated, she claimed that different sources were causing her pain, including electricity, energy, colors, and even specific people. Despite Linda’s wild claims, her mother clings to the belief that Linda’s pain is real and she must do everything to help her, including depleting the family’s savings and sending her son to be Linda’s caretaker.

“Intervention” is a powerful and gripping series in which people confront their darkest demons and seek a route to redemption. The Emmy and five-time PRISM Award-winning series profiles people whose dependence on drugs and alcohol or other compulsive behavior has brought them to a point of personal crisis and estranged them from their friends and loved ones. Each episode ends with a surprise intervention that is staged by the family and friends of the addict, and which is conducted by one of two specialists: Jeff Van Vonderen and Candy Finningan. Exclusive updated interviews with past subjects from the series first seven seasons are available on AETV.com/intervention.

The series has conducted 143 interventions since its premiere in March of 2005, 111 individuals are currently sober.

The second season premiere of “Hoarders,” the number one freshman non-fiction series on cable among adults 25-54, will introduce Augustine, whose son Jason was removed from her home by Child Protective Services 14 years ago, because of her hoarding. She was never able to clean up enough to have him return. Now, as an adult living on the other side of the country, he is filled with shame and resentment, but unable to turn his back on her. Augustine’s hoarding has become so severe that she has lived without water, gas, heat or appliances for the last four years — bathing only once a week at her sister’s house. Complaints from neighbors have instigated a court ordered clean-up and the city is threatening to condemn her house. Now, “Hoarders” follows Jason as he tries one last time to rescue his mother from the filth he escaped from years ago.

“Hoarders” explores the world of extreme hoarding; a mental disorder marked by an obsessive need to collect things, even if the items are worthless, hazardous or unsanitary. The series takes a fascinating look at the lives of people whose inability to part with their belongings is so out of control that they are on the verge of a personal crisis. Whether they’re facing eviction, the loss of their children, jail time, or divorce, they are all desperately in need of help. The series captures the drama as experts work to put each hoarder on the road to recovery.

Inspired by the incredible response from viewers, individuals and families in recovery to “Intervention,” A&E Network along with leading federal agencies and non-profit organizations launched The Recovery Project. The multi-year, multi-platform initiative was designed to help raise awareness that addiction is a treatable disease and recovery is possible. This past September more than 10,000 people, including individuals and families in recovery, treatment partners and advocates from all 50 states and the District of Columbia, gathered in New York City for a historic walk across the Brooklyn Bridge to symbolize unity and hope for recovery. The walk ended in Cadman Plaza and was followed by a rally featuring public speakers and a performance by Smokey Robinson.

A&E continues to co-host, along with the Partnership for a Drug Free America (PDFA), and leading MSOs such as Time Warner Cable, Cox and Comcast, Intervention Town Hall meetings in cities across the country. The Town Hall meetings offer opportunities for parents, teens, addicts, government officials, health professionals, substance abuse prevention experts and educators to develop a better understanding about the root causes and consequences of addiction.

“Intervention” is produced for A&E Network by GRB. Executive Producers are Dan Partland and Sam Mettler. A&E Executive Producers are Robert Sharenow and Colleen Conway.

“Hoarders” is produced for A&E by Screaming Flea Productions. Executive Producers are Jodi Flynn, Matt Chan and Dave Severson. A&E Executive Producers are Robert Sharenow and Andy Berg.

About A&E Network

A&E is “Real Life. Drama.” Now reaching more than 99 million homes, A&E is television that you can’t turn away from; where unscripted shows are dramatic and scripted dramas are authentic. A&E offers a diverse mix of high quality entertainment; ranging from the network’s original scripted series, to signature non-fiction franchises, including the Emmy-winning “Intervention,” “Dog The Bounty Hunter,” “Hoarders,” “Paranormal State” & “Criss Angel Mindfreak,” and the most successful justice shows on cable, including “The First 48? and “Manhunters.” The A&E website is located at www.aetv.com.

Happy Autumn

My favorite time of the year. A lot of the leaves appear to be simply falling off rather than turning color and falling off. It's been a colder than usual Autumn here too.



And the last couple months have been extremely rainy. The Southeast US doesn't have to worry about drought conditions anymore.

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Aliquots — highlights from VUMC laboratories has a link to an article on POTS by some of the Drs at the Vanderbilt Autonomic Dysfunction Clinic: Propranolol Decreases Tachycardia and Improves Symptoms in the Postural Tachycardia Syndrome.

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I guess last week's Law & Order episode mentioned Ehlers Danlos Syndrome - a baby was aborted because it had EDS? Recap. ?????? Weird.

Some links

The always-informative EDS Alert has been updated with a lot of links.

Invisible Illness Week

It is almost Invisible Illness Week and September is Pain Awareness Month so am posting a meme "30 Things About My Invisible Illness You May Not Know":

1. The illness I live with is: Classical Ehlers Danlos Syndrome (cEDS) with secondary Postural Orthostatic Tachycardia Syndrome (POTS) and Myofascial Pain Syndrome. cEDS is a genetic syndrome that affects the collagen in my body, which is the primary protein in one's body. My body's structural integrity is cruddy. Stretchy joints and skin, eye problems etc. POTS makes my heart rate increase (to almost 150 bpm) when I go from sitting or laying down to upright. "Gravity hates me."



2. I was diagnosed with it in the year: 2008



3. But I had symptoms since: always, since it is genetic, but not really symptomatic until about age 40 (which makes me lucky).



4. The biggest adjustment I’ve had to make is: Adapting to my fatigue.



5. Most people assume: I'm not always in pain.



6. The hardest part about mornings are: they happen. POTS really makes one feel terrible in the morning. I take my meds while I'm still in bed so I can get upright without getting sick.



7. My favorite medical TV show is: I don't really watch much TV.



8. A gadget I couldn’t live without is: My TENS -- Transcutaneous Electrical Nerve Stimulation -- unit. ZZZZZZZZZZTTTTTTTT.



9. The hardest part about nights are: That I feel pretty good & want to stay up.



10. Each day I take 6 pills & vitamins.



11. Regarding alternative treatments I: am required to be in mind/body therapy in order to be a pain clinic patient. I'm woo woo anyway so that is fine with me.



12. If I had to choose between an invisible illness or visible I would choose: none of the above?



13. Regarding working and career: everything is different now.



14. People would be surprised to know: I wrote a whole bunch of sonnets about sideshow freaks then years later found out I have EDS - same as sideshow "India Rubber Men" like James Morris. I had no effing idea LOL.



15. The hardest thing to accept about my new reality has been: telecommuting/ADA accommodation/job changes.



16. Something I never thought I could do with my illness that I did was: ...get back to me when this clinical study is over in 3 months haha and maybe I'll have an answer.



17. The commercials about my illness: ha. Yeah, right.



18. Something I really miss doing since I was diagnosed is: going to work.



19. It was really hard to have to give up: having a Bass Ale once in a while.



20. A new hobby I have taken up since my diagnosis is: participating in clinical trials/studies haha. (lucky)



21. If I could have one day of feeling normal again I would: work out in the yard.



22. My illness has taught me: don't take anything for granted.



23. Want to know a secret? One thing people say that gets under my skin is: ...not sure. I'm sure people think I'm a malingerer though. Which bugs me because I've been working since I was 7 years old, and I had 3 part-time jobs while going to school full-time, worked and got 2 Master's degrees, etc.
    
    Also, sometimes I have some pretty gnarly visible bruises so if I am at the store, etc I bet some people assume I'm being abused.



24. But I love it when people: hold the door open for me (shoulder probs).



25. My favorite motto, scripture, quote that gets me through tough times is: this Woody Guthrie song and Peggy Lee song



26. When someone is diagnosed I’d like to tell them: learn as much as you can because most Drs don't know jack sh*it.



27. Something that has surprised me about living with an illness is: its color bleeds through everything.



28. The nicest thing someone did for me when I wasn’t feeling well was: redecorated my house with the stuff I already have & made it more accessible.



29. I’m involved with Invisible Illness Week because: it sucks to have them.



30. The fact that you read this list makes me feel: like a Rolling Stone.

The Eyes Have (had) It

I got new glasses earlier this year, and an eye patch because of macular pucker issues. My eyesight is changing again so I'm going to try some bifocals. Computer text is especially hard on my eyes right now. Anyway, there's a good PDF, "Your Eyes and Ehlers-Danlos Syndrome" at this website. It's by an eye Dr who has Ehlers Danlos.

A local mention of Ehlers Danlos syndrome in a story from Clarksville (of "Last Train To..." fame). Congrats graduates.

Grand Rounds Blog Carnival - Vol 5.47 Invisible Illness

Invisible Chronic Illness Awareness Week is September 14-20. 2009.

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43% Ehlers Danlos Syndrome patients in Europe report "Impossible access" to pain control medical services

35% Ehlers Danlos Syndrome patients in Europe report physicians refuse to treat them

Average wait time for pain control appointments for Ehlers Danlos Syndrome patients in Europe: 11 months

From this survey: The Voice of 12,000 Patients: Experiences & Expectations of Rare Disease Patients on Diagnosis & Care in Europe

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My new trick

My new trick
Originally uploaded by jilly999

Attractive, huh?

Postural Tachycardia Syndrome Documentary

Looks like the Dysautonomia Information Network (DINET) folks are making a documentary about Postural Tachycardia Syndrome -- Changes: Living with Postural Orthostatic Tachycardia Syndrome:




link

Looks like they've done a good job.

Ehlers Danlos Syndrome On Mystery Diagnosis - Full Episode

The full episode of Mystery Diagnosis featuring Ehlers Danlos syndrome is available to watch online thanks to Lynn Sanders. It originally aired on the Discovery Health TV channel.

Also there is an audio podcast: Marfan Syndrome and Cardiac Complications by S. Chris Malaisrie, M.D., Co-Director of the Marfan Syndrome and Related Disorders Clinic, Northwestern Memorial Hospital. It discusses aortic root dilation, heart valve issues, and aortic aneurysms.

A no frills basic info video on EDS!

Ehlers Danlos Syndrome video

Someone made a good video.

Some leeenks

Researchers from Keele University’s School of Psychology have determined that swearing can have a ‘pain-lessening effect’, according to new study published in the journal NeuroReport: Swearing Can Actually Increase Pain Tolerance

Transition in Chronic Illness Booklets: Several booklets, including Grief and Loss

Lord Shiva Kicks Ass: The Liberating Power of Loss

I've come to the conclusion I've been grieving these past couple weeks about becoming disabled. (I know, I'm kind of dense.) I have a therapy appointment at the end of the month; I'll talk about it then. I don't necessarily think it is a bad thing. My heart feels very open & I'm getting a good lesson in "tender heart" as Trungpa calls it in his Shambhala tradition.

(I'm lucky - my therapist knows all about Shambhala training, etc so I can talk about this stuff without her thinking I'm a kook.)

I'm sad for the things I can't do anymore yet my newly downgraded capabilities haven't completely sunk in yet.

I can appreciate a bigger picture so I'm not completely wallowing/drowning. But it still feels like grief and loss. ouch.

Patients Are Not A Virtue

I've tried to avoid turning this blog into a total complain-a-thon but, hell, my life is literally falling apart in some sort of extended-release manner so here is another post.

Patient

adj.

1. Bearing or enduring pain, difficulty, provocation, or annoyance with calmness.
2. Marked by or exhibiting calm endurance of pain, difficulty, provocation, or annoyance.
3. Tolerant; understanding: an unfailingly patient leader and guide.
4. Persevering; constant: With patient industry, she revived the failing business and made it thrive.
5. Capable of calmly awaiting an outcome or result; not hasty or impulsive.
6. Capable of bearing or enduring pain, difficulty, provocation, or annoyance: “My uncle Toby was a man patient of injuries” (Laurence Sterne).

n.

1. One who receives medical attention, care, or treatment.
2. Linguistics. A noun or noun phrase identifying one that is acted upon or undergoes an action. Also called goal.
3. Archaic. One who suffers.

[Middle English pacient, from Old French, from Latin patiēns, patient-, present participle of patī, to endure.]

Since I last posted, I requested ADA Accommodations, lost my job, got my job back and got my ADA Accommodations (I think). It is taking a long time. I've missed a lot of work due to the POTS and EDS and have been on medical leave. Like good citizens we've saved $$ but it is pretty much gone since my health insurance costs almost $2,000 a month while I've been on leave & I'm the primary breadwinner with the mortgage payments etc.

Blah.

I'm doing good with doing my PT exercises and stuff.

Some articles:

Article on POTS in the newspaper: 'Every step is a battle’ The disease: Postural Orthostatic Tachycardia Syndrome, or POTS

Article on EDS in the newspaper: Surviving the stigma of invisible disabilities

A University of Pennsylvania-collaboration of bioengineers studying the physical forces generated by individual cells has created a tiny micron–sized device that allows researchers to measure and manipulate cellular forces as assemblies of living cells reorganize themselves into tissues: Bioengineers Develop Microfabricated Device To Measure Cellular Forces During Tissue Development

Non-musculoskeletal symptoms in joint hypermobility syndrome. Indirect evidence for autonomic dysfunction?

Back From Baltimore

I was delayed in Baltimore for a day partially due to illness and partially due to the airline. I'm home now.

The visit with Dr. Francomano went well. I found out some things about my body that I didn't know about before. Some of my finger joints are hypermobile. That may be why my fingers have been bothering me this year. I am going to try Silver Ring Splints, as she suggests.

The whites of my eyes are turning blue. Just a little bit, around the iris. I have blue-grey eyes so it is hard to see it. I find this news kind of creepy disturbing.

My diagnosis is the Classic type of EDS.

How health insurers secretly blacklist those with certain ailments

How health insurers secretly blacklist those with certain ailments.

I've heard on different message boards that having an Ehlers Danlos diagnosis renders a person uninsurable. Is that true?

If I lost my job I would lose my health insurance. Would I ever be able to get health insurance again? (I guess I could apply for SSDI.)