The Enemy Within - Background

I have a long term illness. I have been ill for many years and didn’t know it. If you have patience for my story, please continue reading, otherwise here is your out. I would take it if I could, but I am stuck with it forever. But if you are brave and continue, don’t feel sorry for me. Celebrate, because each day is a gift.

Twelve years ago, I had a few of surgeries, one of which was called a “Bilateral Mitchell’s”. That is a fancy name for a bunionectomy. It hurt like hell, really didn’t fix the problem and it sure didn’t make my feet look pretty. But you live and learn that doctor’s really do not know everything… that is the reason that they practice medicine.

So in the succession of my devolving, I have found that I am latex intolerant. (I really don’t know what they put in that rubber, but it makes me bleed if left on me long enough. Same for band-aids. Come on! Really?) I am allergic to quite a few medications. I have Restless Leg Syndrome. I am Hypoglycemic. And the new one… Fibromyalgia. This is the one that is really bad news and I have obviously suffered with for many years and didn’t know it. And for you naysayers… it is REAL. I hope you never get it.

Rewind. Last Year I had really had enough of my feet hurting so badly that I felt like I couldn’t walk. I had to force myself to get up and face my day. The pain was affecting my hips and back because of the way I had to get moving. I went to an Orthopaedic doctor who got me fitted for orthotics. WHAT A NIGHTMARE!!! I won’t go here. That memory makes me angry and I get ugly. Anyway, They did what they could and finally sent me to a podiatrist. LOVE HIM! Dr. Taylor is the BEST!!! He listened and sent me to a pain management center to schedule a pain conduction test. This was a bad experience. Short of throwing me up against a wall and doing a body cavity check, they treated me like a common criminal. They wanted me to sign a contract signing me over to them. YES! I am NOT kidding! I ended up turning that guy in to the AMA and wrote him a letter telling him I didn’t need a drug dealer. Funny thing is… I never met him. His staff caused the whole problem.  I immediately left that office and told Dr. Taylor that he needed to not send people to this guy. So Dr. Taylor sent me to Dr. Hasan, a Neurologist for this test.

I met Dr. Hasan and we discussed what was going on. He sent me for and MRI for lower lumbar and then we were going to meet back in a couple of weeks and have the conduction test. I took my husband with me and he went back in the room. (I don’t do pain very well, isn’t this ironic?) So, we sit there while Dr. Hasan explains to me that it really isn’t my feet that are my problem, although they are not nifty as far as feet go. The problem are a few bulging discs and quite a few Tarlov cysts, to which I am going to have to be sent tot a Neurosurgeon for possible removal. *GASP!* Then we get on with the conduction test. For those of you that don’t know what a conduction test is, it is a machine that kind of looks like a fancy battery and they stick cables in it and they put  these little stickies on your and clamp the cables to you. Then the doctor plunges a HUGE needle into your muscle and turns on the juice from said machine to see how your nerves take it. Now… I want to remind everyone that I don’t do pain. I help my husbands hand, laid there, gritted my teeth and took it, while tears ran out the sides of my eyes. I never said a word. I never screamed out loud. And when the torture was over, the Dr. said, “I am proud of you. I didn’t think you’d be able to go through it.” His diagnosis was that he thought I had Fibromyalgia. He medicated me with Lyrica and then he then farmed me out to Dr. Katz at Emery Spine Center.

Dr. Katz. Not much to say about his bedside manner other than he is professional. That is fine by me because Dr. House types aren’t my cup of tea. Dr. Katz said that the cysts were inoperable. He also confirmed the Fibromyalgia verdict.He also told me to not look it up on the internet. He said there are a ton of crazy people out there spewing crap about this disease and all I need to know is that it is REAL and that it can be managed.

I then had to find a primary that I could trust to go along with my Endocrinologist, Neurologist, Neurosurgeon/Orthopaedist.  I let my Endocrinologist do the honors and she picked Dr. Ghosh for me. He is AWESOME!!! So is on the same page as all of the other people with regards to me. I even had a flare up (I call them episodes) in his office and was he ever amazed at it. He was so astonished, he called his Rhematoid Dr. friend in to witness it. I have no shame. Come on in…. Enjoy me perform!

So here I am, months and month later. I have had my share of changing meds due to ever increasing dosages and not being able to handle the higher dosages or Drs. trying the latest greatest thing and me puking my brains out because well… I can’t tolerate the chemicals. I have even gone to the extreme of having facet joint injections in my lower back to try to eliminate some of this hell which is my life. Hello… didn’t work. I will never do that again. And now you are up to date as well… and this is the condensed version.

- Gigi

The End of a Short Trip; the Beginning of a Lifelong Odyssey

This will be my last blog on the road before I arrive back in the States after a long day of travel tomorrow. Strangely, it doesn’t feel like the end at all, only an interlude before my next adventure. Travel is addictive and I am completely intoxicated. I think it will be a tough adjustment to go from weeks of new adventures, art, culture, music, and food to being back at home in my normal routine. I warn all my loved ones, I may experience a tough withdrawal!

I savored my last day in Vienna. A couple hours in the Kunstgeschichte (Art History) Museum, browsing the rooms full of Titians, Rubens, and Rembrandts. I was thrilled to find a room full of the Northern Flemish artist Peter Brueghel the Elder. He gives us a peek into the everyday life of Medieval Europe: the changing seasons, festivals, and daily life for the peasants. So much detail in every scene. Usually you find one or two Brueghels in a museum, so an entire room was a treat! I also discovered a room full of the Spanish artist Diego Velasquez. In my university days as an art history minor, I spent an entire term researching and writing about the portraiture of Velasquez. To see in person the very portraits I studied so intimately – let us just say the slides did not do them justice.

The afternoon was for wandering and saying goodbye to Vienna. I stumbled across a park called the Augarten, hiding behind a wall in the Leopoldstadt neighborhood just north of the Ringstrasse. The park itself is brown and slumbering already for the winter, but it was still full of life as people jogged, biked, and walked their dogs through the avenues of evergreens. The big surprise is that over this tranquil scene looms two giant flakstürme, or flak towers, from World War 2. Huge monstrosities of concrete. Forlorn and menacing. They are now stripped of all their equipment and home to flocks of birds. Completely at odds with the entire mood of the park and a somber reminder of the not-so-distant horrors this city has experienced.

One last afternoon at my favorite coffeehouse (yes, I already have a favorite!), the Cafe Tirolerhof. One last melange. And then off into the sunset (or I suppose technically sunrise) on tomorrow’s flight back to reality. May I never recover from the seductiveness of travel.

Muscles Do Not Stretch. Huh? That’s Right, Muscles Do Not Stretch.

It might feel like it, but that’s not what’s actually happening. A skeletal muscle is attached to a bone at both ends and always stays attached (unless something really bad happens). The overall design length remains roughly constant as it elongates and contracts.

If you bend at the waist to touch your toes and your hamstrings and butt are “stiff,” it is not that the muscles are shorter than they were last week. Here’s what’s happening: What we regard as stretching is an important aspect of the body’s fail-safe system that protects it from events that would restrict the ability to move. The muscles are telling us that they are approaching the limit of what they regard as normal motion, beyond which damage might be done.

Get Moving and Read the Rest of This Blog – Thanks Egoscue Orange County

If You Have Ever Had Fibro-Fog, You Will Get A Kick Out Of This!

Fibro Fog Funnies -- Remember To Laugh

Two friends with fibromyalgia sat down for lunch.

One looked at the other and said, “Please don’t get mad at me. . . I know we’ve been friends for a long time, but I just can’t think of your name! I’ve thought and thought, but I can’t remember it. Please tell me what your name is.”

Her friend glared at her.

For at least three minutes she just stared with a blank expression.

Finally she said, “How soon do you need to know?”

http://restministries.com/?p=973

Understanding Egoscue Method Therapy (Synopsis)

The Egoscue Method recognizes that fundamental anatomical, physiological and biomechanical principles govern the human musculoskeletal system. With only very rare exceptions, each person is born with certain core design characteristics that serve as a strong, resilient and efficient operational platform. By using a blueprint of this extraordinary platform as a guide, the goal of the Method is to eliminate disparities that can occur when injuries or negative lifestyle conditions affect the way the musculoskeletal system actually moves as opposed to its underlying structural parameters. By restoring muscular balance, skeletal alignment and the harmonious interplay of internal systems, the body takes a quantum leap in healing power, stamina and physical capability. The Egoscue Method is not a form of treatment that chases after short term, symptomatic relief. Rather, symptoms provide a common sense starting point, a working frame of reference based on each individual’s unique combination of strengths and limitations. Our primary objective applies to everyone we seek to help—to eliminate musculoskeletal system disparities and the resulting postural dysfunctions that interfere with pain-free living.

Read the Rest of Downtown San Diego’s Blog

Will Medical Marijuana come to North Carolina?

Medical marijuana: Just what the doctor ordered for North Carolina?

Gaston Gazette

July 04, 2009 10:32 PM

Corey Friedman

Prescription painkillers made her retch. Muscle relaxants ravaged her liver. So Jean Marlowe put down her pills and rolled a joint.

“I tried marijuana, and in five minutes, my stomach stopped shaking for the first time in five years,” said Marlowe, who has used marijuana as medicine since a doctor recommended the drug in 1990. “It really does work.”

The founder and executive director of the North Carolina Cannabis Patients’ Network, Marlowe is asking state lawmakers to pass a bill legalizing medical marijuana use.  The bill is currently in the House of Representatives’ Health Committee, and two of  Gaston County’s three House delegates who serve on the committee have indicated they would likely vote against it.

House Bill 1380, the N.C. Medical Marijuana Act, would allow patients access to medical-grade cannabis with a signed statement from a physician. Growers and dispensaries would be licensed and regulated by the state Department of Health and Human Services.

“All of these people who have been kindly, caringly, lovingly sticking their necks out to grow a little bit of high-quality medication for patients could actually come forward and get a license and be legal,” Marlowe said.

North Carolina would become the 15th state to legalize medical marijuana and would see estimated annual tax revenues of $60 million within four years of the bill’s passage.

Reps. Wil Neumann and Pearl Burris Floyd said the U.S. Food and Drug Administration would have to approve marijuana for medical use before they would consider writing an exception into the state’s cannabis ban.

“The FDA needs to make the determination of whether it has medical benefits or not,” Neumann said. “I would not favor it until the FDA comes out and wants it properly cultivated and harvested for medicinal properties.”

Marijuana faces a political minefield in the fight for federal recognition. The FDA discounted its potential medical application in a 2006 review, contradicting a 1999 study from the National Academy of Sciences’ Institute of Medicine that found it “moderately well suited” for treating certain conditions.

The U.S. Drug Enforcement Administration calls marijuana the nation’s most abused illicit drug and classifies it as a Schedule I controlled substance, indicating “no currently accepted medical use in treatment in the United States.”

Floyd challenges those who support medical marijuana to seek FDA approval.

“It would be nearly impossible to regulate an illegal recreational drug even with a good doctor’s prescription,” she said in an e-mail. “If it is such a great idea and an untapped source of revenue, then it would meet the rigors of the FDA approval process.”

Rep. William A. Current said he is “skeptical” of medical marijuana but has not studied the issue enough to have an informed opinion.

“I just haven’t heard enough to reach any kind of decision on it, but from what I know, I would be hesitant to open this door unless we had really tight controls,” he said.

Current, a private-practice dentist, said he would rely more on medical and scientific evidence than personal feelings when deciding which way to vote.

“I think the medical community is going to have to step up on this issue and help make this decision,” he said. “People in political realms are not equipped to make these decisions without their guidance.”

Marijuana as medicine

Marijuana is “moderately well-suited for particular conditions” including nausea and vomiting from cancer patients’ chemotherapy and the rapid loss of body weight known as “wasting” in AIDS patients, according to the 1999 Institute of Medicine study, “Marijuana and Medicine: Assessing the Science Base.”

Long lists of side effects accompany many prescription drugs, and overdosing can be fatal. Advocates say by comparison, cannabis offers a safe alternative to pharmaceuticals.

“There are no side effects that are harmful,” Marlowe said. “There has been over 5,000 years of documented medical use of cannabis, and not a single death has ever occurred.”

Marlowe said a user would have to smoke 1,500 pounds of marijuana in 15 minutes – a physical impossibility – to ingest a toxic dose.

“There is no such thing as a lethal dose,” she said.

Muscle relaxants can weaken patients by gnawing away at their muscle tissue, Marlowe said, but cannabis allows them to maintain their strength.

“Almost every one of the muscle relaxers helps with muscle spasms, but they also atrophy the muscle over a period of time,” she said. “One unique property of cannabis is it can stop smooth muscle spasms while maintaining the muscle mass.”

Marijuana increases users’ heart rates and may decrease blood pressure, according to a 2001 American Medical Association report. It can impair short-term memory, motor skills, reaction time and information processing skills. Chronic users can experience withdrawal symptoms, but doctors conclude that cannabis is less addictive than alcohol and tobacco products.

“Although some marijuana users develop dependence, they appear to be less likely to do so than users of alcohol and nicotine, and the abstinence syndrome is less severe,” the AMA states in Report Six of the Council on Scientific Affairs.

In the 2001 report, AMA doctors encouraged researchers to develop a smoke-free inhaled delivery system for delta-9-tetrahydrocannabinol, or THC, the primary psychoactive substance in marijuana.

“Like tobacco, chronic marijuana smoking is associated with lung damage, increased symptoms of chronic bronchitis, and possibly increased risk of lung cancer,” the report states.

Marlowe refutes the belief that marijuana is a gateway drug that leads users to try more harmful substances. She points to members of the N.C. Cannabis Patients’ Network who were formerly prescribed heavy-duty painkillers.

“Not only have none of them gone to hard drugs, they’ve all come off of narcotics,” she said. “Marijuana is not a gateway drug. The most recognizable, easiest gateway drug that most people run into is tobacco.”

A continuing crusade

An institute in North Carolina’s Research Triangle Park processes and distributes medical marijuana to select participants in a nationwide federal study, according to the text of HB 1380. Meanwhile, the 386 patients of the N.C. Cannabis Patients’ Network cannot legally obtain the drug themselves.

“Our oldest patient is an 86-year-old World War II veteran who suffered nerve damage to his feet from the heavy packs he carried during the war,” Marlowe said. “Now he’s suffering, and he has to be considered a criminal.”

Marlowe, too, has been considered a criminal for her medical use of marijuana. The Mill Spring resident said she uses the drug to treat her numerous medical conditions, including muscular dystrophy, rheumatoid arthritis and degenerative disc disease.

She was arrested in 1998 when U.S. Customs agents intercepted a package of cannabis she ordered from a farm in Switzerland.

A judge sentenced her to six months on house arrest and two years of probation, but Marlowe was soon convicted of a probation violation because of her continued marijuana use.

She spent 10 months in a federal prison camp in West Virginia.

“It’s been a battle,” she said. “I’ve been doing this for 17 years.”

HB 1380’s future is uncertain. Health Committee members did not vote on the bill after a June 18 hearing, which included testimony from Marlowe and other NCCPN patients.

The bill’s primary sponsor, Rep. Earl Jones (D-Guilford), said he will seek a vote to move the bill out of committee without prejudice. The Health Committee would not vote on the bill’s merits, but majority approval would allow it to proceed to the House Finance Committee.

“It’s just one step closer to a full debate on the floor, and that’s what I really desire more than anything,” Jones said. “Every time the public hears more about this, many myths are dispelled, and we see an increase in support.”

Jones also filed a companion bill, HB 1383, which proposes a referendum on medical marijuana. The mechanism for licensing growers and dispensaries is identical to the one proposed in HB 1380.

“There are those who continue to feel some trepidation about it because it’s a political liability,” he said. “One option would be to allow the citizens of the state of North Carolina to vote on it.”

You can reach Corey Friedman at 704-869-1828.

MAKING INROADS

Since 1996, 14 states have passed laws allowing medical use of marijuana:

- Alaska
- California
- Colorado
- Hawaii
- Maine
- Maryland
- Michigan
- Montana
- Nevada
- New Mexico
- Oregon
- Rhode Island
- Vermont
- Washington

SOURCE: National Organization for the Reform of Marijuana Laws

Big win.

Brownies! And not a moment too soon.

Went big shopping yesterday and got a bunch of different flours to try and make my own baking mix.  Or at least mess around with baking gluten, corn and soy free.  Before I tell you about the brownies, though, I’ve got to talk about shopping.

For the last 4+ years I’ve had months on end when driving the car was too much.  I was in pain, on medication, brain fogged beyond stupid.  And driving was painful, taxing and dangerous.  Fast forward to yesterday when I took the van and went shopping; not one store but two!  Had well thought out lists in my pocket for each store (shocking) and knew how to get from one place to another.  (Since I’ve lived in Spokane my entire life, it was pretty confusing after I was diagnosed when I started having trouble figuring out how to go somewhere and/or getting all turned around and lost.  Spokane is not Metropolis.)

Anyway…

I zipped through my shopping and arrived home to find Kevin fast asleep in a nap.  So I brought in all the groceries.  If you’ve never had fibromyalgia or some equally baffling syndrome-ish disease you probably can’t feel the import of that phrase.  It was eight trips back and forth from the car to the kitchen.  Oh yeah, I counted!!  I was triumphant.

PLUS, you’ll never guess.  It was a rainy day!  I mean, come on…really?  I felt like I finished the Fibromite Iron Man.

To reward myself for just being so damn cool, I made another attempt at brownies.  I started with a recipe from Great Gluten-Free Baking by Louise Blair.  I tweaked it for my own taste and ingredients.  I think I’ve changed it enough to reprint it here without violating Ms Blair’s copyright privileges.  If she sues me, I’ll let you know.

Nummy Nutty Brownies

• 3 oz unsweetened chocolate.  I used plain baker’s chocolate which may or may not have been gluten free.  I was desperate.
• 7 T butter or marg.  I used Smart Balance which is soyish but vegan.
• 1 c organic brown sugar.  I didn’t pack it down in the cup because even though I love brownies I don’t like them sickly sweet.
• 2 eggs, beaten.  Sorry all my vegan readers.
• 1/2 t vanilla
• 1/2 c ground almonds (mmmmm…)
• 2 T brown rice flour
• 1 1/2 t sorghum flour
• 1/2 c chopped pecans
• 1/2 c chopped walnuts

Preheat the oven to 350 degrees F.  Butter a 11 x 7 inch pan.  (NB: I don’t think my pan was the right size so watch your cooking time.)  After I buttered the pan, I dusted it with dutch cocoa instead of flour.  I don’t know if it makes a difference but it made me feel all fancy!

Melt the chocolate (I used the microwave) and then the butter/marg.  Stir that all smooth and pretty.  Stir in the rest of the ingredients gently and lovingly.

Pour the batter into your pan and stick it in the oven for 30 minutes or until done.  I read somewhere that with gluten-free brownies it’s better to err on the side of underdone and chewy rather than way done and crumbly.

Cool, cut and enjoy!