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.)

Ehlers Danlos syndrome mentioned on CNN

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

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

: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

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

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

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

Video of Mystery Diagnosis with Ehlers-Danlos syndrome

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

New Year's resolutions

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

hand pain
Originally uploaded by jdybka

more pain art

Made some pain art

haha

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

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.

Ehlers Danlos Syndrome on TV Dec 8, 2008

I had read on the CEDA list that they are doing an episode on "Mystery Diagnosis" about Ehlers-Danlos syndrome. It's on the Discovery Health network. My brother David is going to tape it for me. At EDNF I read that the last 30 min is the portion about EDS.

Dec 08, 10:00 pm
(60 minutes)

repeated:
Dec 09, 2:00 am
(60 minutes)

Dec 13, 5:00 pm
(60 minutes)

Mystery Diagnosis: "The Baby Who Wouldn't Stop Crying"

Baby Averi Williams develops a bluish tint to the whites of her eyes
and a bulging forehead; 15 year-old, Lynn Sanders is leading a normal
life when she begins to experience a deep nagging pain in her hands
during swim practice.


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well knock me down with a feather

"I didn't arrive home until five, since I went to gym with the rest of the class. (I'm not allowed to take part because my shoulders and hips tend to get dislocated.)"

Guess who wrote that?

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I wore my fighter pilot pants yesterday. I can't tell if they help, really.

pedantic graffiti

Un graffiti pedante
Originally uploaded by capitrueno

Graffiti in Madrid, Spain

blah

My husband just left until April. (Out on the road.) He made it to Sydney alright.

Hoping my body holds together OK while he's gone.

Advantages of having Ehlers-Danlos Syndrome

1. I look younger than my age, which is evidently common with EDS type 3?
2. I can scratch any itch on my own back.
3. I bet I could escape a pair of handcuffs.

Latest disadvantage to add to the list - macular pucker. Smooch.

O o

My pupils look like this:

O o

It's been like that for at least a month. I didn't notice, someone else did. It's more noticeable in dim light so I think the weird one isn't expanding right. I have a Dr appt this afternoon.