Bad Glue

Ugh this sounds horrible

2009-11-09T22:15:00.001-06:00

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

2009-10-27T17:24:00.007-05:00

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

2009-09-16T23:38:00.004-05:00

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

Invisible Illness Week

2009-09-10T17:57:00.008-05:00

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":

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."

I was diagnosed with it in the year: 2008

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

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

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

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.

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

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

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

Each day I take 6 pills & vitamins.

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.

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

Regarding working and career: everything is different now.

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.

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

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.

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

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

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

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

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

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

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.

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

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

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.

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

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.

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

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

The Eyes Have (had) It

2009-08-19T11:40:00.000-05:00

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

2009-08-01T11:53:00.001-05:00

My new trick
Originally uploaded by jilly999

Attractive, huh?

Postural Tachycardia Syndrome Documentary

2009-07-31T06:56:00.001-05:00

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

2009-07-28T17:24:00.009-05:00

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!

2009-07-15T07:10:00.004-05:00

Ehlers Danlos Syndrome video

Someone made a good video.

Some leeenks

2009-07-14T07:03:00.005-05:00

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

2009-06-26T15:45:00.001-05:00

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

2009-04-09T15:39:00.004-05:00

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

2009-03-31T14:45:00.002-05:00

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.)

Ehlers Danlos syndrome mentioned on CNN

2009-03-08T11:45:00.002-05:00

In the article, In tough times, health care considered a luxury, Doug Pegram is interviewed about losing his health insurance and its ramifications for his Ehlers Danlos syndrome.

Rare Disease Day

2009-02-28T07:02:00.005-06:00

I'm home woo hoo.

Today is Rare Disease Day.

Info:

The last day of February has been designated as worldwide “Rare Disease Day” to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.

...

For more information about Rare Disease Day activities in the U.S., go to NORD’s website (http://www.rarediseases.org). For information about the global observance, go to www.rarediseaseday.org.

Source: National Organization for Rare Disorders (NORD)

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Also see the You Tube Channel and Twitter feed. #rare is the Twitter hashtag that folks are using for tweets regarding Rare Disease Day.

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Last Day of Tests

2009-02-26T07:00:00.000-06:00

:D

I think Dr Raj is going to go over treatment plans with me today. (I get topped off with a bag of saline tomorrow morning and get to go home. I miss our dogs and cats.)

The only type of Ehlers Danlos syndrome he said they've encountered with POTS is the type 3 hypermobility type. That's the only type that doesn't currently have a gene test for diagnosis yet. It's unknown why they go together.

I drink about 2-3 liters of water per day & asked how to tell if I've had too much water. I was told not to worry about it; it's unlikely I'd drink so much to cause water intoxication.

Where I've Been For The Past Week

2009-02-25T08:25:00.000-06:00

I've been at the Autonomic Dysfunction Clinic at Vanderbilt in Nashville for just over a week now. Last fall I was here for about 3 days, I think, when I was diagnosed with POTS. I'm really lucky because I live in the Nashville area so I don't have to travel far to get here. In fact, I used to work at Vanderbilt so it used to be my commute. :)

At the moment I am in bed and waiting for a druug trial to begin. They have to wait a while after I eat breakfast. I am in about 5 research studies. (I don't feel like looking at the paperwork and my memory isn't too hot right now.) I've done about 4 other trials so far & have another tomorrow. I take pill X (I'm given a list of them when I go over the paperwork but I don't know what it is when I take it) and then I sit for a while. Because my problem (POTS) is more evident when I am vertical, periodic BP/pulse measurements are taken while I am sitting and when I am standing up. I have an I.V. catheter and blud draws at intervals. I also write down what I am feeling during the "stand up" times. Takes about 7 hours, which includes the "getting up early to eat breakfast then waiting for it to start" time haha.

I think I've watched about 47 episodes of NCIS and various permutations of Law & Order while I have been here. :)

Other tests I've had are a blud volume test, sweat test, and a test for a type of vein gas. Yeah the results are a little bit off.

When I am finished on Friday they will go over my results and give me a treatment plan. Then my neighbor is picking me up. We will go immediately to coffee. I'm on a special diet here. It isn't bad - I'm never about to complain about having food to eat or a bed to sleep in. But do I miss coffee and chocolate.

There is a filter on this computer, hence the creative spelling.

School House Rock - Them Not-So-Dry Bones

2009-02-11T22:10:00.001-06:00

Pallimed: Arts & Humanities: You're Going to Die

2009-02-03T14:30:00.000-06:00

Pallimed: Arts & Humanities: You're Going to Die

Video of Mystery Diagnosis with Ehlers-Danlos syndrome

2009-01-06T10:24:00.004-06:00

5 minute clip from the Mystery Diagnosis episode with Ehlers-Danlos syndrome.

....UPDATE full version is up now.

New Year's resolutions

2009-01-01T11:39:00.003-06:00

Lighten up

Keep on working out with my PT exercises and exercise ball.

Try not to worry so much.

Quit being such a hermit lately.

hand pain

2008-12-14T12:21:00.001-06:00

hand pain
Originally uploaded by jdybka

more pain art

Made some pain art

2008-12-13T23:42:00.004-06:00

haha

2008-12-12T13:02:00.000-06:00

Give me a doctor by W. H. Auden

Give me a doctor partridge-plump,
Short in the leg and broad in the rump,
An endomorph with gentle hands
Who'll never make absurd demands
That I abandon all my vices
Nor pull a long face in a crisis,
But with a twinkle in his eye
Will tell me that I have to die.

From the American Pain Foundation

2008-12-03T11:17:00.003-06:00

FOR IMMEDIATE RELEASE
Contact: Tina Regester
Ph:443-690-4707
E-mail: tregester@painfoundation.org

Wisconsin Power Over Pain Action Network Leader to Appear on Discovery Health Channel’s “Mystery Diagnosis”

Baltimore, MD (December 3, 2008) On Monday, December 8, 2008 at 10:00 p.m.(ET/PT), Discovery Health Channel’s “Mystery Diagnosis” will feature Waterford, Wisconsin resident and American Pain Foundation’s Pain Community Advisory Council member and Power Over Pain Action Network leader Lynn Sanders and her fifteen-year struggle to find a diagnosis for her unusual health symptoms.

“Mystery Diagnosis,” which examines the real medical mysteries of patients through personal interviews and reenactments, will lead the viewer step-by-step through Sander’s life beginning at age 15 when she began to experience a deep, nagging pain in her hands during swim practice; her seemingly dead-end journey of enduring endless medical visits and tests; and the day she was finally diagnosed with Hypermobility Ehlers-Danlos syndrome (EDS) when she was 30 years old.

“The American Pain Foundation (APF) is proud of Lynn for all of the hard work she does to educate others about Ehlers-Danlos syndrome, a very painful condition, and how difficult it can be for doctors to properly diagnose and treat EDS,” said Will Rowe, Chief Executive Officer for the American Pain Foundation.

Ehlers-Danlos syndromes are a group of inheritable connective tissue disorders which share common features including easy bruising, joint hypermobility (loose joints), skin hyperelasticity (stretches easily) and weakness of tissues. Individuals with EDS have a defect in the connective tissue that supports many parts of the body including skin, muscles and ligaments. Hypermobility Ehlers-Danlos syndrome affects approximately one in 10,000 people and is the only type of EDS that cannot be diagnosed through skin or tissue samples. Diagnosis is made though clinical observations.

Sander’s segment is also scheduled to air on December 13th at 5 p.m.(ET/PT) and again on December 20th at 9 p.m.(ET/ PT). Check your local cable television listing to locate the Discovery Health Channel in your community.

An active member of APF’s Power over Pain Action Network in Wisconsin, Sanders received American Pain Foundation’s first Patient Advocacy Award in 2007 for her advocacy work on behalf of people in pain based on her personal experience with Ehlers-Danlos syndrome. Sanders also volunteers and serves on the board of directors for the non-profit organization she formed in 2006, Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc. (children, adults, research, education, support).

To learn more about Sanders’s appearance on “Mystery Diagnosis” or to schedule an interview, please contact Tina Regester, the Communication’s Manager at the American Pain Foundation at 443-690-4707 or tregester@painfoundation.org.

# # #

Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. For more information, visit www.painfoundation.org.

The Pain Community Advisory Council (PCAC) performs as an advisory group to the APF, providing counsel as it strives to improve the quality of life for people of the pain community. This is accomplished by having PCAC members speak directly to the APF about personal pain experiences, providing input on APF initiatives, participating in research and advocating for all constituents on issues affecting the pain community as in keeping with the APF mission.

A project of the American Pain Foundation (APF) The Power Over Pain (POP) Action Network is a developing grassroots network of volunteers who are people with pain, caregivers, and healthcare providers. For more information, visit www.popactionnetwork.org.