Pediatric Geneticist for my 23 year old wife

I'd like to take a minute to apologize for posting this from my cellphone without proofreading it. I believe that I have fixed all of the topographical errors and missing pieces of information.

My wife has been suffering from unrelenting pain for years. She's seen almost every specialist known to man. She's been called crazy, hypochondriac, lazy, drug seeking, and God knows what else. She's been through a total of over eighteen months of physical therapy. She's had half of a dozen surgeries.

She was on a chronic pain support group describing her symptoms when someone told her (my wife) that she (the friend) had EDS (Ehlers–Danlos syndrome) and my wife's symptoms sounded extremely familiar. My wife and I researched EDS and decided that it was worth looking into from a clinical perspective.

In June, my wife and I had our three-month follow-up appointments with our PCP. He wasn't convinced that she had EDS, but he admitted that it was possible, so he referred her to a genetic specialist in the hopes that, even if it wasn't EDS, he might find an answer to the route of her pain and various other symptoms.

Well, my wife was scheduled to see one of the Pediatric Geneticists at Hershey Medical Center 9/30 at 10:30am. Remember, my wife and I have had quite a few issues with physicians at that hospital, especially regarding pain, opioids, and botched surgery. We didn't want to go there, but we didn't have much of a choice, so we made an exception to our "NEVER go to Hershey" rule. Anyway, we never got the paperwork in the mail, so we decided to get there an hour early.

They took us back right away. We never got a chance to fill out the paperwork, which they promised that they'd bring to the secondary waiting room ASAP. The doctor (geneticist) and the genetic counselor came in. The doctor was old, which worried me because my wife is on significant doses of opioids, many older doctors are extremely opiophobic, and the doctors at this hospital are known for rampant Opiophobia. The doctor took an extremely thorough history and exam. He told the generic counselor that the diagnosis was obvious. Every new exam test and question about her history and family history just reasured him of this apparently obvious diagnosis. He repeatedly told us that should have been diagnosed in early childhood. This diagnosis is the cause of her pain and the stretch marks that were repeatedly blamed on the prednisone. Dr Ladda spent well over an hour talking to us and reassuring us.

Anyway, he gave her an official diagnosis of EDS (Ehlers–Danlos syndrome) Type 1/2.

He proceeded to tell her that ANYTHING that helps her, including opioids and an intrathecal pump should be tried. Be then he proceeded to confirm what we already knew:
* opioids are not that dangerous
* opioids can cause physical dependence
* opioid addiction fear is vastly overblown
* opioids can be extremely effective for pain relief
* tolerance develops
* you have to weigh relief versus side effects (only side effect either of us suffers from is constipation)
* Miralax is great for OIC (opioid induced constipation)

He's recommending that her PCP
* increase her current dose of Duragesic
* refer her for an intrathecal pain pump evaluation
* stop harassing her about her need for pain medications
* order follow-up echocardiograms every 2 years

I know that I had plenty more that I wanted to say, but I can't remember,so I'll post this as-is and if anyone notices anything that I may have forgotten, please comment and/or email me.

Steve
bit.ly/IPkills
IntractablePainKills@gmail.com

Notes: EDS is a genetic disorder, but the geneticist informed us that the blood tests are clinically irrelevant, so the doctor diagnosed solely on examination, a series of physical tests on her joints and skin, patient history, and family history.

There is no direct treatment for EDS, there is no cure. There are lists of things that she can do to limit damage. Other than that, pain control through whatever means necessary (opioids, SCS, IDD/pump, APAP NSAIDs, Lidoderm, etcetera) should be the primary concern.

Saturday

I started writing this yesterday as a post to my support group, but couldn't focus long enough to edit it for this blog. I've tried to edit it from current tense to past tense, but I easily could have missed something and if I did, I apologize.
Written 9/29/2013
Edited 10/8/2014

-------------------------

I spent most of Saturday at my daughter's favorite park and, oddly enough, the local cemetery (Molly Pitcher is buried there, my 5 year old daughter can't get enough of history) with my daughter. We (my wife) and I took her to the park with my Dad today and I'm in excruciating pain. I knew that I'd pay for it, I was maxed out on my breakthrough pain meds and Zofran/ondansetron for the day before dinnertime* and I would kill for an epidural or nerve block (I don't believe in serial nerve blocks and I never really want too have one done), but it was do worth it to see her eyes light up while reading the historical marker and making new friends and racing down the slide with one of her seven new friends and finally mastering the monkey bars. We also took my Dad to Giant (grocery store) because he needed groceries and things have been tight and Bank of America hasn't exactly followed through with the pre-employment promises and it was nice to be able to help him.

Anyway, back to my point, I may not walk for days, but nothing compares to spending eight hours with your kid and being sure that she, at least for a little while, they forgot that your sick and/or dying.

She figured out that I was sick I'm her own and I just couldn't lie to her. Yes, I sugar-coated the facts, but I lost too many people without watching and can never forgive the adults that let me get blind-sided. I was the kid that was way too mature for my age and got along with adults just as well as I did with kids, I babysat my newborn cousin at the age of ten. Yes, adult(s) were in the house, but they were busy and I liked the responsibility. Anyway, she's exactly like that and we thought she could handle it, and she has. My mother doesn't agree, but she was/is a terrible mother. She's also one of the ones who let me repeatedly get blindsided. My point is that her opinion means nothing to me. In fact, her disagreement assures me that I made he right choice.

Anyway, my real reason for this post is to say that I had an awesome day and I have an awesome kid and it was worth the pain and suffering over the next 3-4 days.

* My doctor allows me to take my six daily doses as I see fit instead of every for hours. PAIN MEDICATION SHOULD ALWAYS BE TAKEN AS PRESCRIBED

Safe

I recently bought a new medication safe and I'm pretty happy with it, so I though I'd share it with you. It's not like those crappy lock boxes from Walmart that even I can open with my bare hands. It is a safe. It even has hardware to bolt it too the ground.

I got it for $30 (was $150), but the provide went up by $1.99.

Quarter Master 7825 Electronic/Digital Home Office Security Safe
http://bit.ly/18t5A2o (corrected link)
The current price is $51.99
You need coupon code AUTUMN10
To get it for ~$32 by checking out with Visa V.me mobile

It's a pretty nice digital combination safe that uses four AA batteries (included) and no one is opening it with their bare hands (like a Walmart lock box).

Outside dimensions: 13.75'' H x 9.75'' W x 9.75'' D.
Inside dimensions: 12 '' H x 8.75'' W x 8.5

Note: I am not an affiliate and do not benefit from your purchase, it's just a really good deal that I'd like to share.

Update 9/25/2013

Another day of excruciating pain, waiting out the clock.

A little good news, they're opening a new pain management office about twenty miles from here. Unfortunately, it's part of the same group that refused to help me before. Still, that means hiring at least 1-2 doctors, which increases the odds of one of them overriding the office manager and helping me.

Wisdom

"You know that old saying... Those who can, do. Those who can't, sign our paychecks. Change that last part to make the laws."

Courtesy of Cabot

Update

I spent several hours at the park with my daughter yesterday, I risky over did it. I'm in excruciating pain and I can't sleep even with my nausea medications. I used another of my severely limited supply of Lidoderm (my insurance gives me crap about opioids, but doesn't covert Lidoderm without a shingles diagnosis, what a racket).

On the plus side, re-watching Mythbusters and remembering some neat facts. Mythbusters is a really good distraction.

Mini rant: pharmacy can't get fentanyl patches in stock and we're eventually going to be stuck with a new brand that may or may not be useable. I'm so sick of artificial stuff shortages thanks to the War on Drugs!

Steve
IntractablePainKills@gmail.com

Opioid Refugees: Patients Adrift in Search of Pain Relief

Opioid Refugees: Patients Adrift in Search of Pain Relief

http://bit.ly/16pSb6k

OT- Today in History 9/21/2013

Today is Saturday, Sept. 21, the 264th day of 2013. There are 101 days left in the year.

Today's Highlight in History:

On Sept. 21, 1912, magician Harry Houdini first publicly performed his so-called Chinese Water Torture Cell trick at the Circus Busch in Berlin, escaping after being immersed upside-down in a vertical water tank, his ankles secured in a set of stocks which made up the tank lid, which was locked into place.

On this date:

In 1792, the French National Convention voted to abolish the monarchy.

In 1893, one of America's first horseless carriages was taken for a short test drive in Springfield, Mass., by Frank Duryea, who had designed the vehicle with his brother, Charles.

In 1897, the New York Sun ran its famous editorial, written anonymously by Francis P. Church, which declared, "Yes, Virginia, there is a Santa Claus."

In 1912, legendary cartoon animator Chuck Jones was born in Spokane, Wash.

In 1937, "The Hobbit," by J.R.R. Tolkien, was first published by George Allen & Unwin Ltd. of London.

In 1938, a hurricane struck parts of New York and New England, causing widespread damage and claiming some 700 lives.

In 1948, Milton Berle made his debut as permanent host of "The Texaco Star Theater" on NBC-TV.

In 1962, "The Jack Paar Program," a weekly, prime-time show that followed Paar's stint on "The Tonight Show," began a three-year run.

In 1970, "NFL Monday Night Football" made its debut on ABC-TV as the Cleveland Browns defeated the visiting New York Jets, 31-21.

In 1982, Amin Gemayel, brother of Lebanon's assassinated president-elect, Bashir Gemayel, was himself elected president. National Football League players began a 57-day strike, their first regular-season walkout.

In 1987, NFL players called a strike, mainly over the issue of free agency. (The 24-day walkout prompted football owners to hire replacement players.)

In 1989, Hurricane Hugo crashed into Charleston, S.C. (the storm was blamed for 26 directly caused U.S. deaths). Twenty-one students in Alton, Texas, died when their school bus, involved in a collision with a soft-drink delivery truck, careened into a water-filled pit.

Ten years ago: Former Citigroup CEO John S. Reed was named temporary head of the New York Stock Exchange. Paul Martin was elected by Canada's Liberal Party to succeed Jean Chretien (zhahn kreh-TYEN') as prime minister. NASA's aging Galileo spacecraft deliberately plunged into Jupiter's turbulent atmosphere, bringing a fiery conclusion to a 14-year exploration of the solar system's largest planet and its moons.

Five years ago: South African President Thabo Mbeki (TAH'-boh um-BEH'-kee) announced his resignation. "Mad Men" became the first basic-cable show to win the top series Emmy; "30 Rock" and its stars Tina Fey and Alec Baldwin won comedy awards. The United States took back the Ryder Cup with a 16 1/2-11 1/2 victory over Europe. Baseball said farewell to the original Yankee Stadium as the Bronx Bombers defeated the Baltimore Orioles 7-3.

One year ago: No one was injured when a plane carrying Ann Romney made an emergency landing in Denver after smoke filled the cabin. The wife of the Republican presidential nominee Mitt Romney was traveling from Omaha, Neb., to Los Angeles, when an apparent electrical fire broke out. A man was bitten multiple times after leaping from a monorail into a tiger exhibit at the Bronx Zoo. People lined up to buy Apple's iPhone5 as it went on sale in the United States and several other countries.

Today's Birthdays: Poet-songwriter Leonard Cohen is 79. Author-comedian Fannie Flagg is 72. Producer Jerry Bruckheimer is 70. Musician Don Felder is 66. Author Stephen King is 66. Basketball Hall of Famer Artis Gilmore is 64. Actor-comedian Bill Murray is 63. Hall of Fame jockey Eddie Delahoussaye is 62. Rock musician Philthy Animal is 59. Former Australian Prime Minister Kevin Rudd is 56. Movie producer-writer Ethan Coen is 56. Actor-comedian Dave Coulier is 54. Actor David James Elliott is 53. Actress Serena Scott-Thomas is 52. Actress Nancy Travis is 52. Actor Rob Morrow is 51. Retired MLB All-Star Cecil Fielder is 50. Actress Cheryl Hines is 48. Country singer Faith Hill is 46. Rock musician Tyler Stewart (Barenaked Ladies) is 46. Country singer Ronna Reeves is 45. Actress-talk show host Ricki Lake is 45. Rapper Dave (De La Soul) is 45. Actor Rob Benedict is 43. Actor James Lesure is 42. Actor Alfonso Ribeiro is 42. Actor Luke Wilson is 42. Actor Paulo Costanzo is 35. Actor Bradford Anderson is 34. Actress Autumn Reeser is 33. TV personality Nicole Richie is 32. Actress Maggie Grace is 30. Actor Joseph Mazzello is 30. Rapper Wale (WAH'-lay) is 29. Actors Nikolas and Lorenzo Brino are 15.

Thought for Today: "The crisis of yesterday is the joke of tomorrow." — H.G. Wells, English author (born this day in 1866, died 1946).

Charting the Depths- CP/IP frequently causes Depression

Depression remains rampant, misunderstood, and stigmatized. For decades, the disease model of depression has dominated discussion of what depression is and what should be done about it. Here, we take a more balanced view of depression and strive to bring this topic out of the dark. We are devoted to expanding the conversation by linking up people who currently suffer from depression, people who have overcome depression, and the friends and family who care about people who suffer from depression. Please join me in helping to start a better, richer national conversation about depression.

http://on.fb.me/1aVxfsZ

Depression comics

These comics are intended to describe what it's like to live with depression, but several of them apply to chronic and intractable pain.

http://bit.ly/16ysiST

Is a glass of water all that different from pain?

I received an email thatcan easily be used to explain how difficult living chronic pain can be...

A young lady confidently walked around the room with a raised glass of water while leading a seminar and explaining stress management to her  audience.

Everyone knew she was going to ask the ultimate question, 'half empty or half full?' She fooled them all. "How heavy is this glass of water?" she inquired with a smile.

Answers called out ranged from 8 oz. To 20 oz.

She replied, "The absolute weight doesn't matter.  It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.  If I hold it for a day, you'll have to call an ambulance.  In each case it's the same weight, but the longer I hold it, the heavier it becomes."

She continued, "and that's the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."

"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden- holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night. Pick them up again tomorrow if you must.

... many of us can handle acute pain without outside help beyond acetaminophen/paracetamol/Tylenol or ibuprofen/Advil/Motrin, but handling chronic pain of equal severity is a much more daunting task.

Acetaminophen/paracetamol/Tylenol

The FDA took over 40 years to finalize the monograph for acetaminophen. During which we eradicated small pox, decoded the human genome and cloned a sheep.

Acetaminophen also the most deadly OTC drug, with over 150 people dying each year in the USA alone. More than half are accidental overdoses, not suicides or longterm effects.

Acetaminophen alone kills more people per year than all prescription opioids COMBINED.

Infant oral solutions are actually 3x more potent than children's oral solutions because its terribly difficult to make children swallow medicine. Also the "infant" dose applies to children up to 3 years old. Imagine trying to keep this straight. Or, if a physician means children's but you buy infants because they didn't specify, you could overdose your child by a factor of 3, and that could kill them. This isn't just a hypothetical, it has happened.

Just things to think about when we self medicate or, for the health care providers, medicate your patients or, for parents, medicate our children.

Prescription Assistance

I encourage everyone, with or without insurance, to check out the Partnership for Prescription Assistance for discounts and free medications. Every cash patient should have an Rx discount card.

pparx.org

Steve

Walgreens' "secret checklist" reveals controversial new policy - 13 WTHR Indianapolis

Walgreens' "secret checklist" reveals controversial new policy - 13 WTHR Indianapolis

http://bit.ly/1fkEiOT

Someone actually got a copy of the policy. The PDF is available at:

http://bit.ly/1fkEPAs

Steve
IntractablePainKills@gmail.com

Rat Park Comic

Please check out the comic version of the Rat Park experiment, which shows that opioids are not the addictive demons that we've been told that they are.

http://bit.ly/ratpark

Steve
IntractablePainKills@gmail.com

OT- Today in History 9/19

Today is Thursday, Sept. 19, the 262nd day of 2013. There are 103 days left in the year.

Today's Highlight in History:

On Sept. 19, 1982, the smiley emoticon was invented as Carnegie Mellon University professor Scott E. Fahlman proposed punctuating humorously intended computer messages by employing a colon followed by a hyphen and a parenthesis as a horizontal "smiley face." :-)

On this date:

In 1777, the first Battle of Saratoga was fought during the Revolutionary War; although the British forces succeeded in driving out the American troops, the Americans prevailed in a second battle the following month.

In 1796, President George Washington's farewell address was published.

In 1881, the 20th president of the United States, James A. Garfield, died 2 1/2 months after being shot by Charles Guiteau; Chester Alan Arthur became president.

In 1934, Bruno Hauptmann was arrested in New York and charged with the kidnap-murder of Charles A. Lindbergh Jr.

In 1945, Nazi radio propagandist William Joyce, known as "Lord Haw-Haw," was convicted of treason and sentenced to death by a British court.

In 1957, the United States conducted its first contained underground nuclear test, code-named Rainier, in the Nevada desert.

In 1959, Soviet leader Nikita Khrushchev, visiting Los Angeles, reacted angrily upon being told that, for security reasons, he wouldn't get to visit Disneyland.

In 1960, Cuban leader Fidel Castro, in New York to visit the United Nations, angrily checked out of the Shelburne Hotel in a dispute with the management; Castro ended up staying at the Hotel Theresa in Harlem.

In 1961, Barney and Betty Hill, a New Hampshire couple driving home from vacation, experienced what they later claimed under hypnosis was a short-term abduction by extraterrestrials.

In 1962, the Western TV series "The Virginian" debuted on NBC.

In 1970, the situation comedy "The Mary Tyler Moore Show" debuted on CBS-TV.

In 1985, the Mexico City area was struck by a devastating earthquake that killed at least 9,500 people.

---------

Ten years ago: Former Hurricane Isabel raced from Virginia to Canada, delivering far less rain than expected but leaving millions without power. Iraqi leader Saddam Hussein's defense minister, Sultan Hashim Ahmad, surrendered to U.S. forces.

Five years ago: Struggling to stave off financial catastrophe, the Bush administration laid out a radical bailout plan calling for a takeover of a half-trillion dollars or more in worthless mortgages and other bad debt held by tottering institutions. Relieved investors sent stocks soaring on Wall Street and around the globe.

China's food safety crisis widened after the industrial chemical melamine was found in milk produced by three of the country's leading dairy companies.

Hours after performing for thousands of South Carolina college students, former Blink-182 drummer Travis Barker and celebrity DJ AM were critically injured in a fiery Learjet crash that killed four people. (DJ AM, whose real name was Adam Goldstein, was found dead in his apartment on Aug. 28; he was 36.)

Baseball's new instant replay system produced its first reversal when Tampa Bay's Carlos Pena had a two-run double changed to a three-run homer during the fourth inning of a game against Minnesota. (The Rays beat the Twins, 11-1.)

One year ago: Members of Congress presented the Congressional Gold Medal to Myanmar democracy leader Aung San Suu Kyi (ahng sahn soo chee) in a ceremony in the Capitol Rotunda. The Justice Department's internal watchdog found fault with the agency's handling of a gun-trafficking probe in Arizona that resulted in hundreds of weapons turning up at crime scenes in the U.S. and Mexico. The inspector general's report referred more than a dozen people for possible disciplinary action for their roles in Operation Fast and Furious. The Windseeker ride at Knott's Berry Farm in Buena Park, Calif., broke down, leaving about 20 riders who expected a three-minute thrill dangling 300 feet over the amusement park for nearly two hours.

Today's Birthdays: Author Roger Angell is 93. TV host James Lipton ("Inside the Actors Studio") is 87. Actress Rosemary Harris is 86. Former Defense Secretary Harold Brown is 86. Actor Adam West is 85. Retired MLB All-Star pitcher Bob Turley is 83. Actor David McCallum (TV: "NCIS") is 80. Singer-songwriter Paul Williams is 73. Singer Bill Medley is 73. Singer Sylvia Tyson (Ian and Sylvia) is 73. Singer Freda Payne is 71. Golfer Jane Blalock is 68. Singer David Bromberg is 68. Actor Randolph Mantooth is 68. Rock singer-musician Lol Creme (10cc) is 66. Former NFL running back Larry Brown is 66. Actor Jeremy Irons is 65. Actress Twiggy Lawson is 64. TV personality Joan Lunden is 63. Singer-producer Daniel Lanois is 62. Actor Scott Colomby is 61. Musician-producer Nile Rodgers is 61. College Football Hall of Famer and former NFL player Reggie Williams is 59. Singer-actor Rex Smith is 58. Actor Kevin Hooks is 55. Actress Carolyn McCormick is 54. Country singer Jeff Bates is 50. Country singer Trisha Yearwood is 49. Actress-comedian Cheri Oteri is 48. News anchor Soledad O'Brien is 47. Rhythm-and-blues singer Espraronza Griffin (Society of Soul) is 44. Celebrity chef Michael Symon is 44. Actress Sanaa Lathan (suh-NAH' LAY'-thun) is 42. Actress Stephanie J. Block is 41. Rock singer A. Jay Popoff (Lit) is 40. Comedian and TV talk show host Jimmy Fallon is 39. TV personality Carter Oosterhouse is 37. Actress-TV host Alison Sweeney is 37. Rock musician Ryan Dusick is 36. Folk-rock singers-musicians Sara and Tegan (TEE'-gan) Quin are 33. Actor Columbus Short is 31. Rapper Eamon is 30. Christian rock musician JD Frazier is 30. Actor Kevin Zegers is 29. Actress Danielle Panabaker is 26.

Thought for Today: "Start every day off with a smile and get it over with." — W.C. Fields, American comedian (1880-1946).

It's not the morphine, it's the size of the cage: Rat Park experiment upturns conventional wisdom about addiction

It's not the morphine, it's the size of the cage: Rat Park experiment upturns conventional wisdom about addiction

http://bit.ly/1aUzVKW

The government (especially DARE) lied to us. Just like they did with cannabis. Does anyone remember the study that "proved" that cannabis kills brain cells? The one where they suffocated monkeys with smoke over and over again, then dissected their brains and pointed to the suffocation damage and said that cannabis kills brain cells, even though it actually heals the brain.

We really can't trust our government to study anything (CFIDS, cannabis, opioids, the majority of drugs approved by the FDA in the past decade).

Steve
IntractablePainKills@gmail.com

RSO/cannabis & other cancer cures

Cancer is worth more than our lives. Cannabis both prevents and treats cancer, including the most deadly childhood cancer, DIPA/DIPG

Essex tea is another potential treatment that got shut down.

Severe Flare

I want to amputate my legs right now. The pain is unbelievable. Nothing is helping. I'd give anything for relief. I'd give wanting to have an unravel pump, Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral, and/or methadone (in addition to the Duragesic).

It is despicable that we must suffer when there are drugs and treatments that could help us, especially when we can pay for them.

It's hard to believe that we went from opioids being OTC (over the counter), to CII, and now to practically unattainable.

Steve