Dysautonomia 101 - Dysautonomia For Dummies

I’m no medical expert, but I’ve certainly been diagnosed twice by one, which is perhaps why many people have continued to email me or comment under my other Dsyautonomia posts asking for my help and advice.  I realized that I should help them by writing a detailed, yet easy Dsyautonomia post to quickly educate them. 

When I was diagnosed with Dysautonomia in 2009, I spent weeks gathering information educate myself.  I was completely overwhelmed by the lack of easy information and resources out there.  For instance, my public library, one of the best in the state, only had one book that had two small chapters on my condition, and there were only a few medical books in the entire state of Michigan I could borrow and read about the condition.  Once I got the book, it took another book to help decipher it.  No one I knew had heard of my condition, not even my former primary care physician, who eventually remembered “after a few days” hearing about it in med school.  Luckily for me, I’m a hell of a researcher, and I pulled together a lot of information myself.  I read a textbook by one of the few men doing research in the US on Dysautonomia, and as luck would have it, I was also diagnosed at Mayo Clinic by the same man – one of America’s leading experts on Dysautonomia – Dr. Philip Low.  So, between his research, handouts, and my own internet research, I’m fairly certain what I share with you is fairly good information and advice.  Trust me, if you have just been diagnosed with Dysautonomia, I know how hard your life has been for the past few years just trying to get diagnosed.  I know what you faced and encountered along the way.  You could use a cheat sheet on the condition, and I’m happy to give you mine, which I plan on updating from time to time.

I just got this t-shirt, isn’t it great?  I can’t wait to wear it tomorrow when I work out and run errands.

What is Dysautonomia:

First of all, you may be asking yourself, what the heck is Dsyautonomia?  I’m not going to get into the specifics of it, simply put, Dysautonomia is a malfunctioning of the Autonomic Nervous System, or the unconscious bodily functions - your heart rate, digestion, breathing, blood pressure, pulse, body temperature, sweating, bowel function and sleep patterns.  Dsyautonomia can also be refered to as Autonomic Neuropathy.  Think of it this way – Dysautonomia can interrupt the inner workings of the human body.  So, just like a driver of a faulty Toyota Camry, we are not in control and we are at the mercy of our vehicles.

Brief History of Dysautonomia:

Back in the old days, it was known by another name, Neurasthenia, and basically, the condition forced sufferers to be bedridden, and occasionally die because of their weak nervous systems.  This is why “fainting couches” were created in the first place. 

What causes Dysautonomia:

Marfan Syndrome

Ehlers-Danlos Syndrome (EDS)

Collagen Imperfecta

Shy-Drager Syndrome

Genetics, as in the case of the Jewish-based Familial Dysautonomia

Pregnancy

Autoimmune Diseases

Parkinson’s Disease

Brain Injury

Physical Trauma

Deconditioning

Viral Illnesses

Chemical/Toxin Exposures

Breast implant surgery

Extreme Stress

*Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset.

Types of Dysautonomia:

There are several types of Dysautonomia, and I am blessed to have more than one form, which I’ve highlighted for you in bold.

Familial Dysautonomia (FD) – The rarest and most deadly of the disease.

Postural Orthostatic Tachycardia Syndrome (POTS)

Orthostatic Intolerance (OI)

Pure Autonomic Failure (PAF) [also known as Bradbury-Eggleston Syndrome or Orthostatic Hypotension (OH)]

Mitral Valve Prolapse (MVP)

Vasovagal or Neurocardiogenic Syncope (NCS) (I have near-Syncopy, as I rarely pass out.)

Multiple Systems Atrophy (MSA)

Gulf War Syndrome

Fibromyalgia

Chronic Fatigue Syndrome (CFS)

Panic Attacks

Anxiety

Inappropriate Sinus Tachycardia (IST)

Irritable Bowel Syndrome (IBS)

Symptoms of Dysautonomia:

Light-Headedness

Dizziness

Vertigo

Syncope/Fainting

Blurred Vision

Numbness/Tingling

Depression

Headaches

Migraines

Myofascial Pain

Malaise

Salt Cravings

Pallor

Facial Flushing

Nerve Pain

Trouble Breathing

Increased Emotions

Urinary Problems

Sexual Difficulties

High or low blood pressure

High or low pulse (I’ve seen mine as low as 42, but I’m normally at 60.)

Body temperature regulation

Sweating Abnormalities

Difficulty Digesting Food

Bloating

Constipation

Diarrhea

Nausea

Acid Reflux

Chest Pain

Seizures

Lack of Low Blood Sugar/Hypoglycemia Warning Signs

Sleep pattern problems

Vision problems

Sluggish Pupil Reaction – Difficult to drive at night.

Exercise Intolerance

Aches and Pains

Non-mentally induced anxiety and panic

Brain Fog/Mental Confusion

Chills

Intolerance to heat or cold

Noise Sensitivity

Light Sensitivity

Low Back Pain

Weight Gain/Loss

Detachment from Surroundings

Easily over-stimulated

 Tests/Diagnosis:

Tilt-Table Test

Electromyography (EMG) (Hurts like hell, don’t let them trick you and tell you it feels like a pinch)

Quantitative Sudomotor Axon Reflex Test (QSART)

Breathing Tests

Gastrointestinal Tests

Thermoregulatory Sweat Test (My favorite test of all – you go into a sweat tent, naked, get painted with gold powder like the Bond Girl, and they take picture of you (Certain parts are covered with a wash cloth) and you come out an eternity later looking like a fat, sweaty Barney because you’ve turned purple.  I had to drink hot liquids before the test, and 104 minutes later, they had raised my temperature to only 100.4 or something near that.  When you have a heart intolerance this is actually tortuous.  Plus I had purple coming out of everywhere for two days.

Standard Medical Treatment:

Midodrine – My Neurologist prescribed this, but my Cardiologist didn’t want me to take it, as he feared it would give me a heart attack, so I’ve never tried it.  It is the drug of choice.

Fludrocortison

Somatostatin

Erythropoietin

Cheap Treatment:

If you are like me, a patient with Pure Autonomic Failure (PAF/OH), you can treat your symptoms on the cheap:  I have used all of the following, and I barely feel dizzy, unless I walk up or down stairs. 

Compression stockings

Drinking water – I sip water constantly to increase my blood pressure.

Vyvanse – Raises blood pressure and helps with the brain fog.

Exercise – The more you do it, the better your body feels.  I wish the same were true for my headaches.

Eating salt – I prefer real bacon bits on my whole wheat English Muffins.

Additional Treatment:

Physical therapy

Yoga

Tai-Chi

Massage therapy

Various anti-anxiety pills and antidepressants

What to avoid when you have Dysautonomia:

Over the counter sinus and cold medications

Caffeine

Chocolate (yeah, right)

Stress (yeah, right)

Anything that drops blood volume - becoming anemic, sudden blood loss, donating blood

Prolonged Surgeries

Certain types of Anesthesia

Alcohol

Why do I personally have Dysautonomia?

I have a rare genetic connective tissue disorder that involves a loss of collagen according to the doctors at Mayo Clinic.  There is no cure for my genetic collagen disease and my doctors can only treat my symptoms.  Since all of my tissues are weak, I have all sorts of problems that at times can be way worse than my Dysautonomia symptoms.  My eyes suck.  My joint are out of whack and I once injured my neck in my 20s just laughing really hard while shaking my head.  I already have lost two inches of height in ten years due to this loss of collagen in my body as it has caused Degenerative Joint Disease.  As of 2008, seven of my disks were torn, herniated, or bulged.  I have regurgitation in two of my four heart valves, but thankfully only have PAC’s currently.  Mayo also diagnosed me with a bleeding disorder but I haven’t seen a specialist for it, nor do I care to.  I’m not supposed to have surgeries at all, as my surgical scars stretch thin over time, and I’ve had the one on my leg burst open once.  I’m hoping the 11 staples my gyno put in last summer to remove my uterus (that had split in half and had fallen deep into my pelvic bone) will hold the cut across my abdomen down the road.  Don’t even get me started on my teeth, because I can’t even “go there” right now.  And, for an interesting side note, one of the connective tissue diseases that causes Dysautonomia is so bad that they actually abort 85% of all babies who are found to have it.  My own father is legally blind, and both of his parents died blind.  My dad and his father also had torn heart valves and had their heart valves replaced in their early 50’s.  My mother is partially deaf and (is supposed to) wear hearing aids in both her ears.  She has similar spine problems as I do, but does not go to the doctor since she is still living in the ghetto, poor, and unemployed.  Her teeth are crumbling out of her mouth, she is balding horribly, and will literally have a heart attacks if either one of those things happens to me one day.  Still, despite all this crap, I still manage to exercise, and volunteer.  I was working full-time until I lost my job six months ago due to the economy.  I find that “mind over matter” is the thing that helps me the most.  I tell myself shut up, get moving, too bad, whatever it takes to live my life as best as I can.  I may be exhausted and in pain, but I’m still out there, trying to live life, because I’m not letting this stupid conditions get the best of me.  My best advise is - Do not let it get the best of you. 

Share your story:

I would love to hear your story, please introduce yourself and tell us your story, what helps, and what hasn’t so far.  Feel free to come here and vent, rant, scream, whatever.  We all have been there, and we understand to a great degree what you have been through … because we have been through it as well.  Nothing made me happier than getting hundreds of emails over the past year from people who told me they felt crazy or were suspected of being crazy because of all they had been through with Dysautonomia.  You are never alone here! 

A final word from The Girl from the Ghetto:

Please feel free to link to this post if you suffer from (Or just want to write about) Dysautonomia if you are a blogger, or Twitter or Facebook user.  I am very happy to help anyone, because I know how badly it sucks to almost always feel AWFUL.  I spent hours writing this post and I do not want to see my post show up in full or in pieces on your own blog, especially those blogs run for money or utilizing ads.  I find that form of plagiarism highly offensive, especially when it comes to health-related topics.  Also, please do not spam comment here and insert links to your vitamin websites or for any type of cardiac ablation procedures.  Save us both energy and time, because neither of these are proven to help, so I won’t be approving your comments.

[Via http://thegirlfromtheghetto.wordpress.com]

spring cleaning

So today me and D decided to take some donations to a thrift store that’s close to us, the one I’ve talked about before.  Their profits go to a local women’s shelter so I like buying there.  Plus, they have the best quality for price when it comes to clothes.  We looked at some clothes and I found a pair of shorts woot! They’re mens, but that’s alright with me.  LOL D didn’t find anything After that we went to the mall and peeked in at Spencer’s and Hot Topic.  It still amazes me how Spencer’s is still exactly the same as it was when I was younger, and also how much it’s changed.  It’s still the same in that it’s quite alternative, etc.  It’s different in that they have a whole section of sex toys! O_O

Me and D are starting to buckle down on eating healthier. Yes, I’m saying this as I drink a Coke and am eating Jelly Beans LOL But, we have cut down our eating out a ton.  It helps that the internet is working at home again so we’re not needing to go out and about to find open wifi anymore.  We also are strong believers in rewarding ourselves, and that complete restriction is not the way to go.

Lately I’ve been really down on myself about my weight and body image and all that.  I’m not sure why.  D obviously is attracted to me and my weight is not an issue for him.  He accepts me how I am.  I think it’s frustrating for me that I’ve found so many things that don’t work in the long term, and really nothing that has.  I’ve lost a little weight now, since I’ve started walking, I know I have.  I’ve also cut out a lot of junk food and a lot of crap food; processed, boxed etc, as we just don’t eat that.  D’s pretty down on himself  as well.  Since he hasn’t been working he hasn’t been walking or doing anything, so he’s put on about 10lbs over the past couple months

My fibro is thankfully back under control today, I was in so much pain the last couple of days, and a lot of the worst part is that it’s so draining, physically and emotionally.  Last night D I could barely stand for D to touch me.  It was horrible.  Thankfully it’s all over now and believe you me, he’ll certainly be touching me later!!!

We got a lot of cleaning done today.  D hand scrubbed out the oven and I got the patio cleaned up from all the winter nasti-ness.  We’re getting the grill cleaned up as well, it’s been a long…long time since that’s experienced any sort of up-keep.  Our bathtub is currently full of the grates from both the grill and oven LOL

I also got a chemical burn from the oven cleaning stuff.  We think it’s ‘cuz I probably also had another cleaner on my skin, from washing the outside of the patio doors and some of the grill.  So the combination decided to melt off some of my skin.  Oww!

Thankfully when I came out whining that my skin was melting D knew what to do. I’d never had a chemical burn before LOL We put some vinegar on it and that neutralized whatever was burning me. D figured it was lye.  OWW!

We’ve got a rump roast cooking in some black ale right now.  It smells so good in here… It’s about time to wash and cut up the potatoes and put those and the veggies in.  YUM! *licks lips*

That’s about it for now.  I know I’m blogging a lot earlier than I do *shrugs* Maybe I’ll blog again later, maybe I won’t.  I have a couple reviews to write up I may do later on.  But for now…th…the…theee….that’s all folks!!

[Via http://jesseebeth.wordpress.com]

Chapter 7 & 8 of "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome” by Dr. Rodger Murphree

Part 3: Your Path to Healing – Chapter 7: Treating with Orthomolecular Medicine

(portions of this blog came from Dr. Rodger Murphree’s book)

Our body’s homeostatic mechanism, the HPA-axis, and in fact every cellular process, depends on the proper amount of essential nutrients.  The raw biochemical material that makes up our physical and mental being first originates from foods.  The entire process is amazing: macromolecules of carbohydrates, fats, and proteins are ingeniously used to provide the vitamins, minerals, essential fatty acids, enzymes, and amino acids to the body as it manufactures bone, muscle, organs, cells, hormones, enzymes, antibodies, white blood cells, neurotransmitters, and other life-sustaining elements.  We truly are what we eat.

The levels and interactions of vitamins, minerals, amino acids, and the essential fatty acids determine our state of health.  You would be dead in days without these essential nutrients.  They help determine every bodily function: sleep, levels of pain, energy, moods, immune function, digestion, elimination thyroid production, metabolism, and more.  Every cell in the body is dependent on having the right amounts and right interaction of these essential nutrients to work correctly.

What is Orthomolecular Medicine?

When we establish nutritional deficiencies, our health suffers.  Man-made chemicals (synthetic prescription drugs) can’t correct these deficiencies, but a nutritional-replacement therapeutic program can.  This is the very premise of orthomolecular medicine, which means, “right molecules in the right concentration.”

Synthetic drugs may be helpful at times, but they always have an inherent ability to cause harm.  Not only are nutrients such as vitamins, minerals, amino acids, and essential fatty acids un-harmful, the body depends on them for survival.

Vitamin and Mineral Supplements

Problems such as hormonal, vitamin, and mineral deficiencies can contribute to muscle pain and soreness.

Below is a sample list of essential nutrients and their contributions to the treatment of FMS and CFS:

• Vitamin E helps to relieve pain in CFS patients.  It can also improve nighttime leg cramps, which interfere with sleep.
• Vitamin C boosts the immune system by increasing natural-killer cells, B cells, and T cells.
• Magnesium and malic acid have been effective in relieving the symptoms of FMS.  Magnesium is essential to healthy muscle function, and working with malic acid, it increases cellular energy, reduces pain, and enhances immune function by increasing natural killer cells. 
• Inositol enhances the immune system by increasing natural-killer cells.
• Selenium supports the immune system by enhancing antibody production.
• Vitamin D regulates many immune functions.
• Amino Acids, such as glycine, serine, taurine, and tyrosine, are essential for the production of energy in the body and for brain function.
• Zinc supports the immune system by enhancing white-blood-cell activity and supporting healthy antigen-antibody binding.

Sadly, many of these nutrients are deficient in our society.  The facts are that most of our foods are processed, and therefore, the nutrients have been leeched out of them.  As a result 70% of the population is deficient in magnesium, 65% is deficient in zinc, 48% is deficient in calcium, and 56% is deficient in vitamin C.

It’s clear that everyone can benefit from taking a good multivitamin and mineral formula.  This daily habit reduces the incidence of heart disease, hear attack, stroke, glaucoma, macular degeneration, type-2 diabetes, senile dementia and various cancers.

But I already take a vitamin

You might be thinking, I’ve taken a vitamin for years, and I haven’t noticed a difference.  You probably haven’t been taking enough to even make a dent in your deficiencies.

Just a note:

Problems can occur with megavitamin or herbal therapy.  But if symptoms arise, reducing or stopping the therapy will almost always put an end to any side effects.  Working with a physician who specializes in vitamin, mineral or herbal therapies will usually help you avoid any negative effects in the first place.

Chapter 8: Your Stress-Coping Savings Account

We’re all born with a stress-coping “savings account” filled with chemicals – such as hormones, amino acids, and nutrients – that can be deposited and then withdrawn when needed.  Depending on our genes, some of us have large accounts and some of us have smaller ones.  The more stress we’re under, the more withdrawals we make.  If we make more withdrawals than deposits, we get overdrawn, and poor health quickly follows.  Individuals with fibromyalgia and/or CFS have bankrupted their stress-coping savings account.

Although some patients bankrupt their accounts with one overwhelming event, most experience a series of stressful events over the years.  These events typically involve stressful jobs, marriages, family dynamics, surgeries, illnesses, loss of a loved one, divorce, financial failure, etc.

FMS and CFS are the result of internal biochemical imbalances that manifest themselves as physical symptoms.  So in order to right the homeostatic system, you must correct the underlying biochemical problems.  Just like an onion, you peel away one layer at a time until you get to the core.

Layers if the onion (the book goes into detail for each item):

• Dysautonomia and the HPA Axis
• Hypothalamus Gland Dysfunction
• Dehydration
• Low levels of Human Growth Hormone
• Low levels of DHEA
• Low levels of Cortisol
• Low Ovarian and Testicular Function
• Hypothyroidism

The other layers of the onion (the book goes into detail for each item):

• Intestinal Permeability (Leaky Gut Syndrome)
• Malabsorption Syndrome
• The Liver and Detoxification
• Nutritional Deficiencies
• Parasites
• Food Allergies and Hypersensitivities
• Candida Yeast Syndrome/Intestinal Dysbiosis
• Trauma, Especially Neck Injuries
• Depression
• Infections
• Poor Sleep

The next chapter is: Chapter 9: Stress as a Catalyst for Illness

[Via http://fibro2010.wordpress.com]

Pain On The Brain?

As an Acupuncturist, I’m always raving about the benefits of Acupuncture treatment for most any health condition.  The balancing of hormones, stifling the common cold, elimination of acne, wrinkles and sun damage, immune support through cancer treatment… The list goes on and on.

Initially, most of us learn about the benefits of Acupuncture by way of pain relief.  Any type of pain, whether it be a recent ankle sprain or broken bone, arthritis, or the ever present, often debilitating pain of auto-immune disease can be alleviated by Acupuncture.

I often treat patients with Diabetes, Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue, and a spinal disorder known as Ankylosingspondylitis, a condition in which the spinal cord slowly begins to fuse.  Diabetes patients often experience peripheral neuropathy, a painful, burning, tingling disorder that reacts quite well to Acupuncture treatment.  Rheumatoid Arthritis and Fibromyalgia are debilitating auto-immune imbalances which not only cause excruciating pain, but an almost oppressive amount of fatigue.  All of these disorders cause tremendous pain and suffering for their victims.  Thanks to Acupuncture, there is a natural solution available that can certainly enable a person to proceed with a happy, healthy life again.

“How the heck does Acupuncture work to treat pain, anyway?” is a question asked repeatedly in my clinic.  Well, it is quite mysterious.  There are many theories out there.  What we DO know is that the Acupuncture meridians (energetic pathways that pass through each of our body’s organs) are detectible.  We know that when these pathways are weakened or blocked, dis-ease persists.

One British experiment utilizing brain imaging has led to some intriguing discoveries.  What they have proven is that Acupuncture actually raises your pain threshold.  Sufferers of Fibromyalgia and Chronic Fatigue have a very low pain threshold, due to the disease.  In this experiment, the researchers used magnetoencephalography or MEG (brain scans with magnets similar to an MRI) to observe that Acupuncture actually deactivated part of the brain’s pain matrix!

Other studies prove that Acupuncture literally blocks the hormones in the body, which cause us to suffer from pain!

~

From a March 17, 2005 Article in Science Journal: “Pelvic girdle pain is a common complaint among pregnant women worldwide, but no cure exists.

Researchers in Sweden identified 386 pregnant women with pelvic girdle pain. Women were randomly divided into three groups; one received standard treatment (a pelvic belt and a home exercise programme), another received standard treatment plus acupuncture, and the third received standard treatment plus stabilising exercises to improve mobility and strength.

Pain levels were recorded every morning and evening using a recognised scale and all women were assessed by an independent examiner at the end of the treatment period.

After treatment, both the acupuncture group and the stabilising exercise group had less pain than the standard group in the morning and in the evening. Reduction of pelvic girdle pain as assessed by the independent examiner was greatest in the acupuncture group.

Acupuncture or stabilising exercises as an adjunct to standard treatment offers clear clinical advantages over standard treatment alone for reduction of pain in pregnant women with pelvic girdle pain, say the authors.

Acupuncture was superior to stabilising exercises in this study, they conclude.

Adapted from materials provided by British Medical Journal.

~

Is pain in the brain?  Yes, as well as the affected area of concern, which is displayed as deficiency (as in auto-immune cases) or as stagnation from physical injury.  Pain is registered in the brain; extremely perceptible to some and almost not at all for others.

Acupuncture is an intricate, yet surprisingly simple therapeutic system.  Intricate, where the treatment communicates with every organ and tissue in our body. Yet, simple, as Acupuncture can only bring about a constant state of homeostasis.  Balance. The common denominator in all of these systems is that they all communicate with the great pain receptor… The brain.

[Via http://zenredhead.wordpress.com]

this is fibromyalgia. this is my reality.

Re-posted from my facebook notes.

I have been getting lots of questions on what it means to have fibromyalgia syndrome, or FMS or FM for short. I thought I’d take the opportunity to write a few notes about FMS, what it is like having it, and what you can do to support those you know who have it.

WHAT IS FMS?

There is still a lot of research going on, but it is “a disorder of central processing with neuroendocrine/neurotransmitter dysregulation.” Basically this means a person with FMS has a central nervous system that processes pain and other sensations differently from most people. Research is also finding “increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan, and abnormalities in cytokine function.”

WHAT IS IT LIKE TO HAVE FMS? YOU LOOK FINE.

Everyone is different, but here’s how you might be able to imagine it. Think of a time you were in the most unbearable pain of your life. Dial it down a few notches. Then imagine having that pain every day, all day, in at least one part of your body, normally a muscle group. It may be in a different place from day to day, but it doesn’t go away so it eventually exhausts you, which is a major bummer because FMS already messes up your sleep cycle. Without restorative sleep and with being in pain most of the time, your brain goes into a “fog” that causes you to forget things, be dizzy a lot, mix up your words, and have a terribly difficult time concentrating on anything. Emotional breakdowns are inevitable and you have to consciously fight every minute of every day to maintain a positive attitude.

It gets even better. Sometimes you also have debilitating migraines or wake up in the night with your limbs numb. Sometimes you have “pins and needles” in your hands or feet. Sometimes the ringing in your ears gets so bad you can’t hear. Sometimes you have to wrap yourself in a blanket in an air-conditioned room because you’re so cold.

HOW DID YOU GET IT?

Who knows. There are a lot of studies trying to figure this out. Basically, no one really knows why some people get it and others don’t. They think there may be a genetic link. For some people FMS comes on slowly. Normally there is a “trigger” of some sort like an illness, injury, or some other trauma to the body.

WHAT ELSE DOES IT AFFECT?

Among other things:

- the ability to handle stress like most people

- the ability to work “normal” hours, or work at all for some

- it takes a LOT of time to take care of yourself and you often feel guilty about it because it means you can’t take care of others

- it takes you longer than a normal person to wake up and get ready in the morning because of the pain and stiffness

- you can’t really “commit” to being anywhere because you don’t know how you might feel that day

- sometimes you can’t go places everyone else can (for instance, I can’t be anywhere near cigarette smoke or spend much time around people whose clothes/hair smell like smoke)

- the way people treat you; some don’t realize (or care) that you need a little extra grace and patience from them

- you get tired of talking about the way you feel

- you have to tell people you’re never going to “feel better soon”

WHAT CAN YOU DO ABOUT IT?

There are a few FDA approved meds out there. For me, I’ve made the decision recently to stop taking the one I was on, because there isn’t strong evidence that it won’t affect a fetus and we want to have kids soon. Warm water therapy, getting plenty of sun, and trying to stay as warm as possible at all times can help. There is also a fine balance that must be struck between too much exercise and too little. I take a cocktail of about 14 vitamins every day to, among other things, try to help my adrenal glands with cortisol production and hope that one day I will have some energy help from that. Some people have found that eating a specific diet helps.

There is no cure for FMS.

WHAT CAN WE DO TO HELP YOU?

-Pray for me. A lot.

-Champion me. Help me to see my potential and remind me of my dreams. When I’m in a bad FMS flare (like I am now), it is really easy to forget about the things I want to do and be.

-Care about me, but try not to pity me. I am still capable of doing a lot of what I want to do. There may come a day when I can’t do much of anything, so for now I want to be given all the opportunities possible.

-Extend me a little more grace and patience than you might for “normal” people.

-Forgive me. I may get into moods that will really annoy you or do things that will disappoint you. I may have to say no to you a lot. Please realize that I only have so much energy to go around, and I HATE it when I have to spend that energy on myself. You can help me by not adding to that guilt.

For more information visit the National Fibromyalgia Association at www.fmaware.org.

[Via http://ashleylinne.wordpress.com]

Venting a Bit: Thinking Myself Healthy

If I could have written this while driving it would be much better as my mind was flying about the things I wanted to say. Alas I’ve likely forgotten half of them but will try to coherently put something down.

I’ve dealt with invisible sickness for almost all of my life. It started in the 5th grade when I came down with strep throat an mono at the same. This continued and I had mono for most of my high school years. Teachers thought I was faking it and would flunk me, therefore my gpa wasn’t so fantastic. Then came the girlie problems. Period pain, Endometriosis, Adenomyosis and finally Polycystic Ovary Syndrome all diseased that you can’t see unless you put a little telescope through my belly button. Most people thought I was faking it, most doctors told me I was find…some of those even went in and looked around and said I was fine, but I knew that I wasn’t. It’s not easy to be told it’s all your imagination, but I proceeded anyway knowing I wasn’t crazy. June of 2009 I finally had an ovary removed that hurt constantly and would keep getting cysts every other month…some tangerine size, some grapefruit size (don’t ask my why I go to citrus fruit to explain cysts..but I do). I really thought my life was going to change. I thought all the symptoms I had been feeling, fatigue, depression, anxiety, muscle aches and pains, insomnia..blah blah blah were all due to me being in chronic pain from the ovary and going through some hard spots in life. Lately I’ve found this to be wrong.

To keep this focused I want to express how hard it is to have something wrong with you that most people don’t understand and has a stigma of being all in your head. I feel the physical symptoms and they frustrate the hell out of me. This happens more than I like, but I admitted today that I’ve been working with my doctor on my lovely new diagnosis fibromyalgia and completely regretted saying anything once I did. Suddenly they went in to the “we can think ourselves healthy mode”. NOW, I do understand being a psychology major that there is a link between my flare ups, stress level and anxiety, there for part of it truly IS in my head. Yet don’t you think if I was able to THINK myself healthy I would have fucking done it already? I’m sure there are people out there that like the attention of being sick, but personally I feel it’s a pain in my ass. It’s preventing me from being the person I wish to be, the mother I want to be, the wife I want to be and following my dreams. So if I could think myself out of this mess wouldn’t I? I see the psychological connection but I’m not fucking crazy. I may be depressed and anxious and need to take medication for that, but who wouldn’t be when they can’t predict how they will feel on a day to day basis. Will today be a good day? Will today be a bad day?

I’m not sure how to handle talking to someone who tells me it’s mind over health. I beleive that in a sense and think I need to find balance in my life. Yet if it were in my head I wouldn’t have chronic illnesses. I didn’t grow up saying…I want to have chronic illnesses when I grow up and not achieve my dreams…nope…I had dreams just like everyone else did. I’ve just instead spent most of my life sick. Fuck you Fibromyalgia, I’m a little pissed. There’s still the part of me that can seperate that person who tells me that I need to think myself well and I will be…and understand that they just don’t understand. Yet it’s still hurts, frustrates me and makes me angry. I’ve tried herbal remedies, things that have bad side effects, things that don’t work, and even have tried thinking myself healthy. There comes a point where I just don’t want to hear the shit. So…if I heard tapeworms were the cure for fibromyalgia would I go ingest so tape worms? I think not. I’m over searching for a miracle cure. This doesn’t mean I’m still not searching for what makes me feel better…I will always continue that. Yet screw the people who think I need to change my attitude and think myself well. I would be well if that fucking worked.

So today also came with a harsh reality that I don’t think I have the ability to sing anymore. It’s not that I don’t have my voice, but I don’t have the ability to really memorize songs anymore. I’ve been working my ass off on this one song and keep screwing up the words. Ten years ago I wouldn’t have had a problem. I’m thinking the music thing wasn’t such a good idea and will be stepping back. Maybe I can think myself able to memorize things again (sarcasm)

That’s it for now, had to get this out.

[Via http://moderatelyinconclusive.wordpress.com]

Have you experienced side-effects?

CYMBALTA AND LYRICA SIDE EFFECTS

Hi Everyone!  I hope you are all recovering from Hump Day, and are gearing up for the weekend!  I was wondering if you would help me by taking part in these polls?  I am working on an article, and I would love to hear as much feedback as possible!

View This Poll

opinion View This Poll

online surveys

There has been so much talk about these 2 medications as of late on this site as well as on our Facebook group.   It would be awesome to hear about your personal experience, and how these medications have worked for you!!!

Thanks so much for all the time and energy you give to others, and all of the amazing support you give me every day!  I truly appreciate it!!

[Via http://gracefulagony.wordpress.com]

Body

I hadn’t realized how much I am hurting until I started to take the post-op painkillers.

It started in the ER. My stomach hurt, but the pain was not killing me. So I was a bit surprised when they hit me with Dilauded -based on what I know it is a narcotic in the morphine range. It went in IV, and first I felt a spreading warmth all over my body. Then I was like a spreading sense of relief – knees and hands and shoulders and back and… well, all over. The part I noticed least was my belly. Yes, it stopped hurting, but it hadn’t been that bad to start with. It was all the other parts of my body that were so relieved.

I was drugged, but not wiped out. Not going to sleep, able to hold a conversation as long as it wasn’t too complex, able to follow what was going on other wise. And I didn’t hurt.

Afterward I was dealing with the effects of the operation itself – I hurt some if I didn’t move, more if I did. But it wasn’t killer pain as long as I was careful. But when they hit me with the post-op IV morphine, the thing I noticed was the lack of pain every where else in my body.

The first day or two at home I was pretty steady on the Darvocet every 5 or 6 hours, and part of that was due to pain, and part of that was to keep pain from getting out of control. It never got bad – the worst was a few times when I moved wrong and that only for a few minutes. But again, what I noticed was how it lessened the pain in other parts of my body – pain I was so used to having that it had just turned into back-ground was… well, it was still there, but it was no where near as bad.

Tonight I finally talked to Catherine about it. She pointed out the amount of over-the-counter pain medicine I have been taking – Excedrine and Ibuprofin and others – for months. When I first started working at the assisted living I knew it was going to be hard on me – I am not as young as I once was, and it was going to mean suddenly being on my feet for long hours, and being physical in patient care with lifting and other activities. At the beginning I took meds before my shift started, at lunch, and at the end of the day. After a few weeks it leveled off and then started doing better. But by mid-December the amount I was taking was going back up, and the times I didn’t take it but wanted to were more. I added herbs – Cayenne, to be specific – and Icy Hot to a bunch of places all over my body. It helped, but that is all I can say about it. When Catherine got some Vicodine for her back in January I wished I could take some of it. (I didn’t, because of the possibility of drug testing at work. But I sure wanted to.)

So I am suddenly aware of some things that have me worried. I had Fibromyalgia years ago and it was miserable. I finally got over it with a mix of herbs and other natural treatments, and have done pretty well for a long time. Still, I have had times of aching all over for weeks or months, with little relief from most treatments. It was something I had to deal with, and after a while it would get better. Over the last couple of years it has probably happened more often… something I have not really wanted to admit even to myself.

And now this feels a lot like that and it has me worried. If it keeps getting worse it is going to be… well, I’m not sure.

Bright Blessings -

[Via http://taoofpaul.wordpress.com]

STRENGTH

I have had a really rough week.  Pain has been competing for my undivided attention, and the last few days it has won.  I hate it when that happens…. It makes me feel weak and useless.  It reminds me how powerless I am.  I flounder for a while but then I remind myself to breathe and try to see it from a different perspective… it’ll be okay… this too shall pass… I am stronger than I think I am, and at my greatest moments of weakness, when I convince myself I have no more strength to keep fighting, my honey is always there to carry half the load. I truly would be lost without him.

On Thursday afternoon, as I was walking my son home from school, all I could think about was trying to get a grip on this searing and relentless pain…. It gets so frustrating when all I want to do is connect with the world around me, and PAIN gets in the way.

My son was happily holding my hand, and skipping along the sidewalk chatting about his day, and all I could think about was how much his tiny hand brought pain to mine… What kind of life is this?? I asked myself.  What quality of life is there when you can’t even do the simplest of things?!  How do I keep fighting off this beast when I have no strength left?  I have asked myself these questions a million times… and every time I ask the question I am given an answer… I ALWAYS find something that keeps my hopes up, and keeps me going…

My son and I pass a store EVERY day on the way home.  I had never been in the store, and not really given it a whole lot of attention either… it is just a building among all the other buildings that we walk by every day on our way home… and usually I am concentrating on getting home as quickly and as painlessly as possible.

For whatever reason, my son and I stopped dead in our tracks right in front of the store window.  He went to grab his water bottle out of his backpack, and I decided to have a little stretch before continuing our journey home…. and something caught my attention out of the corner of my eye…. the word STRENGTH, carved into a beautiful slab of marble in the front window of this store… For a few seconds I was completely mesmerized.  I was drawn to this piece of art… It was magnetic…  When I broke the trance and looked down at my son, he was staring at the plaque exactly as I was, with his eyes wide, and a serene look on his face….

After a few moments, we pulled ourselves away and kept on walking, but I just couldn’t get it out of my head.  I asked my son what he thought of the stone, and he went on about how beautiful he thought it was.  I asked him what he thought of when he looked at it, and he simply said “Tim”…. I couldn’t have agreed with him more.  My honey has been our rock and a source of strength to both of us.  I was touched that my child had the same reaction I did, and knew that it wasn’t a coincidence.  What an amazing thing for him to say!  I told my son that if the stone was still there when we walked home from school the following day, then we could go into the store to take a closer look…

We ran back to the store on the way home from school yesterday (okay, well I can’t run, but you know what I mean) LOL!  We were both excited to see if it was still there… It WAS!!  We went into the store, and asked the salesperson if she could take it out of the front window so we could see it.  We were bursting with anticipation!

Moments later she put the cold smooth piece of marble in my hands… It was MUCH heavier than I thought it would be.  I ran my fingers along the edge of the engraved letters…. S-T-R-E-N-G-T-H…. What a meaningful word in my life right now…. My honey is my STRENGTH… My son is my STRENGTH…  My parents are my STRENGTH.. Some days I don’t feel like I have much STRENGTH left…  I reflect on how much STRENGTH is has taken me to get this far… without the STRENGTH of my family, I wouldn’t be here… the bonds of love in my life are so much stronger than the pain is…

I asked the sales lady to wrap it up for me, because I was taking it home… I knew I had to give it to my love as a gift.  I wanted to give him a symbol of what he means to me and my son.  He is our rock and our strength.

The rest of the walk home was difficult to say the least.  I struggled to carry this heavy slab of marble on my own.  My son offered to help me, but there was no way he could have carried it, it felt like it weighed a tonne!  Only 4 more blocks to go… Only 3 more blocks to go…Only 2 more blocks to go… My arms felt as if they were going to give out.  My shoulders were burning, and my legs were shaking… Maybe not the smartest thing to do when I am flaring so badly! … I let out a HUGE sigh of relief when we got to our building, up the elevator, and into our home.  We quickly pulled off our winter wear, dumping everything on the floor, so we could unwrap the stone and set it up on our mantle in the living room.

Later in the evening when my honey came home, I showed him his gift.  I told him that both me and my son just KNEW that we had to get it for him because it represented what he meant in our lives….

“Is this really for me?!?!?”  He asked…

“Well of course it is honey!!” I replied… who else would it represent in our home?

“It’s beautiful, and I am touched…Thank you… but the real strength in our family is YOU my Angel… YOU are OUR STRENGTH.” he said as he gave me a hug….

We bought it for him, but it ended up being a gift for all of us…

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

[Via http://gracefulagony.wordpress.com]

Day 1 of reading "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome" by Dr. Rodger Murphree

I just starting reading this book, so I thought I would write about it on my blog.  I forget where I came across it, but I heard it was a good book.

First, lets introduce Dr. Rodger Murphree (taken from http://www.treatingandbeating.com/) – Dr. Rodger Murphree is the founder and past clinic director for a large integrated medical practice located in Birmingham, Alabama. The practice was staffed with board-certified medical doctors, chiropractors, acupuncturists, and nutritionists who combined traditional and alternative medicine. The clinic provided cutting-edge treatments for acute and chronic illnesses. He has specialized in difficult-to-treat patients for the last 10 years. He is a graduate of the University of Alabama Birmingham (UAB) and is a board certified chiropractic physician.

Dr. Murphree has written 5 books for patients and doctors including “Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome,” “Heart Disease: What Your Doctor Won’t Tell You,” and “Treating and Beating Anxiety and Depression With Orthomolecular Medicine,” and “ˇTreating and Beating Fibromyalgia and Chronic Fatigue Syndrome: A Patient’s Manual (available as a downloadable e-book online.)

In 2002, Dr. Murphree separated from his medical clinic so that he could open his own practice in Birmingham, Alabama. He maintains a busy practice focusing on fibromyalgia, chronic fatigue syndrome, cardiovascular disease, mood disorders, and other difficult-to-treat illnesses. He consults with other physicians, lectures throughout the United States giving educational seminars to patients and healthcare professionals, is a regular columnist for numerous publications, and routinely appears on national radio broadcasts.

(portions of this blog came from Dr. Rodger Murphree’s book)

Part 1: You’re Not Alone – Chapter 1: I Understand

You hurt all over, You can’t sleep at night, You’ve been told your illness is all in your head, and Family and friends have no idea how you really feel.  Physician’s first impulse is often to mask your symptoms with prescription drugs.  You can end up on a medical merry-go-round, seeing doctor after doctor, ending up more confused and disoriented than ever.  Getting your doctor to listen is hard,  Finding one who understands you is even harder,  Finding one who knows how to treat you is next to impossible.

Dr. Rodger Murphree suggest that before you take anyone’s advice about treating your fibromyalgia or chronic fatigue syndrome, you should see if they pass this three-item test – Is the advice from someone who actually treats FMS and CFS patients on a regular basis, Is the advice coming from a recognized expert in the field, and After following the advice your getting, are you healthier?

Dr. Rodger Murphree has treated thousands of patients with high doses of certain vitamins, minerals, amino acids, and other nutrients.  This approach is referred to as orthomolecular medicine.  It’s based solely on biochemistry, manipulating and augmenting chemicals inherent in the body in pursuit of optimal function.

What you will learn from reading this book:

• who is most likely to develop these illnesses
• When the illnesses are most likely to occur
• how the syndromes are diagnosed
• what underlying conditions are associated with them
• why traditional medicine alone hasn’t been successful in treating FMS and CFS
• how to feel better in 2-4 weeks than you have felt in years
• why you can’t sleep and how to safely and consistently (99% of the time) solve this problem with natural supplements – within two weeks
• why certain drugs can actually make you feel worse, causing increased pain, flu-like symptoms, poor memory, anxiety, depression, fatigue and more (Most doctors don’t know this information.  They have been convinced by drug company propaganda to push more and more dangerous drugs.  You have to learn for yourself which drugs have been proven helpful and which life-threatening drugs should be avoided.)
• how my proven program – based on successfully treating thousands of FMS and CFS patients over the past 14 years – corrects causes, not just symptoms
• why you have “fibro-fog” (a hard time concentrating and remembering things) and how to correct it, usually in 3-4 weeks
• why you’re so tired, even when you’re taking stimulants like caffeine and amphetamines and how to notice a dramatic increase in energy in 2-4 weeks
• why thyroid tests are usually not accurate, and how to reliably and easily test for low thyroid at home and then successfully correct it
• how to correct general adaptive syndrome so that you don’t feel worse before every thunderstorm or after a day of “overdoing it”
• how prolonged stress eventually overwhelms your adrenal glands and how you can repair them so that you don’t “crash” after every stressful event
• how “leaky gut” can cause food allergies, pain, inflamtion, mood disorders, and chronic infections
• why people with FMS and CFS become depressed and how over-the-counter amino acid supplements often are more effective, faster working, and safer than prescription medications in treating most cases of anziety and depression
• how to beat low moods, anxiety, and depression once and for all
• why you’re in pain and how to reduce or eliminate chronic pain without mind numbing pain medication – typicaly within 2 weeks of supplementing an essential nutrient
• how your diet affects your health
• how to finally, successfully treat stubborn allergies and chemical sensitivities
• how to treat irritable bowel and digestive disturbances, making IBS a distant memory
• how to lose those unwanted pounds you’ve gained and increase your metabolism through some clever adjustments to your diet
• and how to reduce or eliminate your sever reactions to certain chemicals, medications, environments, and even smells

Chapter 2: A growing community of wellness

This chapter has 33 testimonials from different people from all over the world.  The main things I took from these excerpts was: Wellness is a gift from God intended for all; Dr. Rodger Murphree treated the cause of the problem, not just the symptoms; FMS patient’s brains don’t create enough serotonin (serotonin is essential for sleep); Stand up for yourself and Say NO; You really have to take control of your own health.

So far, I really like what I have read and can’t wait to read more.  I am very interested in how he helps people with FMS and CFS.

Stay tuned for more updates.

[Via http://fibro2010.wordpress.com]

Sometimes Life Stinks...

I’m usually a happy, easy-going person–when I feel good…The past three weeks I have felt anything BUT good!  It’s been a while since I’ve had a “flare”, but I’ve been in the midst of one for a while now. 

I have this “visitor” (who is a member of the arthritis family) inhabiting my body who likes to “raise its ugly head” every now and then.  My visitor doesn’t have a definitive name–just fibromyalgia/rheumatoid arthritis-like disease…  Life is sweet, and pretty much normal…until my “visitor” raises its ugly head.

Certain things can trigger the visitor–such as stress or illness.  I’m not stressed, so I’ll attribute its appearance to the stomach flu that I suffered about 3 weeks ago, plus the fact that I reduced one of my medications just before getting sick.  I wasn’t feeling one hundred percent prior to getting the stomach flu, but I sure as heck haven’t felt good at all since having it!

My visitor makes my joints ache, my stomach roll and get upset, and my head aches.  I also get “brain fog” and can’t concentrate.  The worst part is not getting a restful night’s sleep.  I wake up every morning tired–and the day goes down hill from there.

I’m determined not to go back up on the medication dosage if I can help it.  Medication is a “Catch 22″ situation.  While it fixes one problem, it creates another.  It is for that reason, I made the choice to reduce the dosage, and hopefully get off eventually.  I discussed this with my doctor, and he agreed that I could try it.  He warned me that I may experience more pain…when I asked what to do if I did experience more pain–he simply replied “Get back on it.”  Call me “hard-headed” or “slow-to-catch-on”, but I’m not ready to “get back on it” just yet…in fact, I am still taking 1/2 of my regular dosage.  I have to take four different medications to keep my visitor under control–did I mention that I hate taking medications! 

And so life goes on…we deal with the hand that we are dealt.  I have been dealing with this “visitor” for nearly seventeen years… but it’s not going to get the best of me!  Why I am I telling you all of this, you ask?  I don’t know…sometimes misery loves company…sometimes I just need to rant…I have “brain fog” and can’t think of anything to write…take your pick–a poor excuse is better than none. LOL

I am sorry this post is a “downer” but sometimes it just makes me feel better to “let it all out”.  Thanks for listening!  Until next time…have a great day–as for me, I hope better days are coming

[Via http://edshunnybunny.wordpress.com]

can't sleep

Ugh, so I wanna go to bed, I need to go to bed, but I can’t shut my mind off.  I’m afraid tonight may be a sleeping pill night.  *le sigh*

So I thought I’d come BS a bit more.  Earlier, I’d put on my blue nighty, come out to the living room and brought D to bed with me.  We had a good quickie, he brought me to orgasm several times before cumming himself.  I love being filled with his cum, I really do.  There’s just a connection with it, that I feel.  Plus, it’s always nice to have the reminder when some of it slips out later on in the night, or the next day Yea, that’s nasty…but true! LOL

I’m quite looking forward to the weekend. I have this crazy need to clean, dunno where it’s coming from.  I think organize is more like it, I still have a few things I need to dig through and stuff.  I think also this weekend that we’re gonna put a curtain between the living room and dining room/ kitchen.  It’ll be nice, to add a little flavor, as well as keep us from seeing the kitchen all the time and thus thinking about food, as well as regulate temperature a bit more. We live in a pretty old building with hot water heat, so the temp can fluctuate something crazy.

That’s about it.  I have my physical Monday, so I’m looking forward to that.  Have been having some health/body issues that I need to talk to my physician about.  Need some help with pain management as well.  At home I can do things to handle it, but at work and such I don’t have things available that I have at home.  Last time I brought it up she refused to give me anything because of the risk of addiction, but there has to be *something* I can have for work, so I can actually finish a shift when my fibro acts up.  I’m considering seeing about intermittent FMLA just in case, for job protection…but still.

Anyway, that’s about it.  Me and D are winding down now… think I”m gonna pop a pill, check the cats food and water situation and curl up again.

Pleasant nightmares all!!

[Via http://jesseebeth.wordpress.com]

A SAFE PLACE IS A MISNOMER

In the late 1970’s a financially independent English family used their resources to commission a study to determine the safest place in the world. Once they learned that their study revealed that the safest place was the Falkland Islands, they moved there.  Ironically, shortly after this family relocated, they were evacuated during the Agentinian invasion!  I was reminded of this story as I was reading the 1941 Caldecott Winner, Make Way For Ducklings and reflecting how I related to this children’s book.

The story begins with Mr. and   Mrs. Mallard looking for a safe place to bring into the world their little ducklings.  Wherever they flew, Mrs. Mallard continued to see the possibility for danger: If they lived in the woods,   they could be attacked by wolves or if they lived by the  water, they could be  frightened by turtles.  Then they rested at a pond in the Public Gardens.  She was just beginning to relax and think this location could be the best choice when she was nearly hit by a young child riding his bike rather recklessly.

Greg and I have tried so hard this past year to make our home a safe place to enhance my healing environment.  We have taken out carpets and replaced them with cork flooring, we have repainted most of our house with low VOC paints, and we have installed an air filtration system in our bedroom.  And that just describes the larger changes we have made.  Like the English couple and Mrs. Mallard who both found a safe quiet isolated island, we were beginning to believe that we had created a safe place for me to heal.

The problem is that living in such a bubble is not exactly exciting – there are no adventures, no new things to stimulate the five senses.  And that is why once her ducklings were born, and after Mrs. Mallord spent some time teaching them how to swim, dive and follow her, she decided they needed to leave.  I suspect she began to long for the sights, the sounds, the people, the swans, the occasional feeding of peanuts, the energy – the invigorating pulse of the Public Garden.  At least that is what I surmise.  Anyways they proceeded to have an adventure as the ducklings followed their mother walking across the highway heading toward the Public Garden. Even though I usually don’t feel well enough to leave my home very often, I still miss participating in various activities.  Recently, I went into Children’s Place Outlet and I just stood there almost overly stimulated as I watched the children interact with their parents, as I observed the long line to the cashier due to a sale, and I just enjoyed wandering touching and looking at all the colors   of the clothing.   Going into most stores usually are very problematic since I have so many environmental sensitivities.  However, for some reason there is less risk for me walking into this Children’s Clothing Store.  Again I think of Mrs. Mallard and her little ducklings.  She was not prepared to put them in great danger and have them live there just newly born, but even before they could fly there she was prepared to take some risks and move them there.  And that is what most of us who are chronically ill do on a regular basis.  We weigh the pros and cons of leaving our safe home and we are compelled sometimes to take risks regarding our health because we want to feel like we are engaged with the rest of the world.  However, we often lean on our loved ones to help us do that – often by their being with us on our adventure or they nurse us if our health has been greatly jeopardized upon our return!    They are like the policeman who helped Mrs. Mallard and her ducklings get to their destination safely .

However, yesterday I was reminded again that no matter how much we try to find a safe place to live, no matter how much we try to get better, no matter how we try to control the amount of risks we take, we really don’t have that much control concerning our safe environment and our wellness..  To add to my already long list of symptoms, I just learned that I have endometrial cancer and now I need a hysterectomy.  I have been having so many setbacks that I am not looking forward to having this surgery. Like the English couple who were invaded on the Falkland Island, I feel like I have been invaded by abnormal cells and I don’t feel like   my safe healing environment is very safe at all!  However, as I think of the picture of the Mother duck and her ducklings boldly walking through many dangers   just  to get to the Public Garden, I believe I can imitate them by boldly walking through this experience and who knows eventually I may be able to spend less time in my home and more time  at my own  very active and very scenic Public Garden!

I

[Via http://gaylejervis.wordpress.com]

Reactions to a snow-induced pain flare

We had the mother of all snowstorms this weekend, with 29″ dumped on every surface. It’s beautiful, and it also presents many practical challenges. (These include power outages, being housebound, snow-weighted trees, and making a space for the terrier to go outside and use the bathroom.)

Saturday night I was keeping my friend company while she started clearing off one of our cars. The power was out all around the neighborhood. The storm clouds had passed. The sky was a deep purple, reflecting the light of the snow and city lights in the distance. All of our street lights were out, giving a much better view of constellations punctuated by the occasional whispy cirrus clouds. Partway through shoveling, the power came back on. Some of the constellations disappeared, but my disappointment was tempered by the promise of having heat for the night.

That was the wonder of the snowstorm.

We also probably lost at least two trees, which succumbed to the weight of the snow and ended up almost touching the ground. I spent a good bit of the day of the storm wading through the ever-accumulating snow (it ended up reaching almost to my hips) and shaking trees off to prevent further tree death. My friends did a lot of the work, but just “walking” through the snow proved difficult.

Then came my body’s reaction to the experience.

I won’t bore you with an entire catalog of the pain. Suffice it to say that every joint in my legs was sore and burning. Other parts of my body would periodically pipe up, as though saying, “Me too! Pay attention to me too! I hurt too!”

I knew what would help: very light exercise (stretching or walking), meditation, medication, a hot shower, taking it easy by staying out of the snow…

Knowing is easier than doing. It was as though the pain had taken over my brain, and all I could focus on was how much I hurt. Add to it the increasing dismay at being housebound AND in pain, and I was not a happy camper.

I recruited my friends to help me out. Sometimes I just need encouragement to take steps in the right direction. I unhesitatingly took my pain medication, and got to verbally express some of the pain I was feeling. My friend helped me pick out some nice shampoo, and I took full advantage of my shower chair and hot water. I just let it wash over me.

Then I took my big step. I decided I would get situated for a meditation. I got out my mp3 player (which has several guided meditations on it). I decided I would see how meditation went – I wouldn’t force myself to do it for a certain period of time. I just let my meditation be what it was – a way to get in touch with what was going on in my body.

It was painful, at first. But because I have some experience with doing mindfulness meditation while I’m in pain, it was not unexpected.

There was this remarkable feeling of openness that happened during my meditation. I realized how much of my body actually feels pretty good.

This next part may sound crazy, but bear with me. (Having a familiarity with the Buddhist idea of equanimity might help.) I realized that when I found a part of my body that was not in pain, I thought, “Oh good, it feels great!” When I found a part of my body that was in pain, I thought, “Drat, that hurts. Maybe if I focus on it, it’ll stop hurting.”

Then I tried something different – letting go of the idea that pain is good or bad. However terrible the experience of pain is, it is a million times worse if I dedicate my conscious mind to thinking about how terrible it is. I also have a tendency to dedicating my conscious mind to how I want to feel good all the time when I’m enjoying myself. If I do that, I’m not actually enjoying myself anymore – I’m just dwelling in the desire to feel good more often.

So I just let go. I allowed myself to be in pain without judgement. The pain was still there. It still hurt. But it wasn’t in control of my consciousness anymore.

Now I can just be.

[Via http://healinglesstraveled.wordpress.com]

Cod Liver Oil Helps Slow Osteoarthritis

This article caught my eye. Science backs old wives’ tale – cod liver oil helps slow osteoarthritis There is always that question of can cartilage grow again? Can the loss be decreased?

Then I started to wonder.. has there been increase in osteoarthritis in recent years? In my search I found many people believe there is a correlation between increased exercise and osteoarthritis. One researcher David Hunter says ”The largest modifiable risk factor for knee osteoarthritis is body weight, such that each additional kilogram of body mass increases the compressive load over the knee by roughly 4kg”. There is no doubt that increased body mass increases the load on joints, but why is it that so often only one knee is affected or at the very lease one more than the other? To us the answer is simple. It is not your weight, or even the increased exercising you’ve been doing since the new year. It is the faulty body mechanics and postural imbalances. That is not to say that you are doing the exercises wrong, or even the wrong exercises. Your body from a bio-mechanical perspective just cant handle the load…YET.

Enter EGOSCUE… With the correct Egoscue e-cises you can change the structure of your body, and correct any bio-mechanical faults. Just check out the results one of our clients in Austin managed for himself  Check Out This You Are Going To Love It

The wives tale of Cod Liver Oil may very well help slow down loss. However, if you are willing to do your part there is a good chance you can reverse the process completely! Great work Egoscue Austin…Wow!!

[Via http://palmbeachegoscue.wordpress.com]

Why Cigarette Smoking is also Detrimental to the Environment

• The state of California classifies cigarette smoke as a toxic air containment.
• Filters are not eco-friendly and may take up to 10 years to degrade. State and local jurisdictions around the country are spending tens of thousands of dollars for removal and disposal of cigarette butts.
• Cigarette butts #1 pollution on beaches worldwide
• Cigarette smoking is the #1 cause of fire in our county parks

[Via http://pltcsb.wordpress.com]

Explanations

I came across some great explanations of fibromyalgia today, and wanted to share them, since in recent weeks I’ve had quite a few ‘helpful’ people tell me that all I need to do is change my diet / sleep more / exercise more. A little collection of articles from the folks at chronicfatigue.about.com is my response:

>> What’s it like to have fibro?

>> Understanding fibro pain

I rather like two things in the second article – first, the term ‘fibromite’, descibing those of us with fibro. Second, the author’s own names for the types of pain she experiences, and particularly ’sparkler burns’, which I have so often I immediately got what she meant. Here are a few of my own names:

• MacTruck Pain – that overwhelming fatigue and pain that makes you feel you’ve been run over by a mac truck.
• Burn Days – when the muscle burns just make you feel like every inch of skin and bone is on fire
• Zonk Days – when the fatigue and pain get so overwhelming that it feels like I’m a zombie.

I wonder if making up names to cope with the pain and fatigue help? I know that the people who know me best understand that if I say I’m having a ‘burn day’ that it means I’m not up for much. But for well-meaning (and not so well-meaning) folk who don’t know me, it’s really hard to explain what constant pain and fatigue feel like. And when the people closest to you you don’t want to understand, then there’s little you can do to help them get over their perceptions of ‘laziness’. I’ve two words for the latter group, but I’ll be polite and not use them.

[Via http://crackedbetty.wordpress.com]

Lost in the White Stuff...by Lisa Harmon

Kenai looking for a playmate, 2 yrs old

My apologies for taking so long to get this post up. The past couples weeks have been tough. Kenai started acting oddly not long ago and having tummy troubles. Another bacterial overgrowth in the small intestines lead to the icky stools and vomiting. He’s still fighting the yeastie beasties in the ears, and his brother is badly bothered by a skin staph. Mostly though, that strangely intense behavior reappeared in Kenai style full force last week; intensely over-excited about critters, intensely rough playing, intensely fearful of people/things he’s used to, intensely stubborn about going here rather than there… It’s like adolescence, exponentially ramped up on steroids. Just totally out of character and intractable. Even our trainer shakes her head in disbelief! There’s an unnatural intensity, like like his limbic system is on fire, and he just “goes native”, overreacting to everything. That’s how I know to check his tick titers again. Always the personality going sideways. He’s still got a good weight, 130 pounds, but he’s not himself.  This time it is the rocky mountain spotted fever that is the dominant organism. He’s clinical, that’s for sure. At least I can look back and understand those times when he went all weird on me. Like the puppy class freak outs, and the sudden inability to handle going places he liked to go. It was so absolutely perplexing back then. Small comfort, but at least it makes sense.  There’s the neurological stuff like fear/dizziness on stairwells, refusal to cross shiny floor surfaces, vast increases in whining, bloodshot eyes, secondary infections (skin staph, yeast in the ears etc)…add to that, add to that. He’s having a hard time to say the least. Oy my boy. Needless to say, I’m exhausted. He lets me get about 2-3 hours of sleep at a time, for the most part. Sometimes 4 hours. Ouch. Sleep Dep is the, THE, worst possible thing to do to a body with CFS/FMS, not to mention the inner ears go bezerk. But we  are trying to make the best of things, with short car rides in the evenings when he usually feels the best, and as much outside time as I can endure. Kenai has his own “salt lick”; a tub of cream cheese to get him to take his medicine and eat his food. He even watched me write his name on it! Poor BB’s maddening itches have been partially usurped by Kenai’s crisis. But little buddy is getting attention too. He gets his baby baths–soaked with witch hazel and rubbed down with a tea tree oil spiked lotion. He gets to play outside with big bro, which makes him uber happy. He gets attention, just not as much as he’d like. Par for the BB course, right? He knows something’s wrong, getting upset when Kenai is lethargic or sick to his tum. He really gets bent out of shape when I tell him Kenai has to go to the vet. Oh the hound howling when that happens. Little bro all worried. He parks his bony baby butt on the bed and looks out the sliding glass door for hours until I bring Kenai home. Beebs is NEVER in one place that long for anything else! They may drive each other bonkers, but they’d be lost without each other. The Brothers Grin.  Just when I start sliding into the poor-me, I discover a dear four footed fellow named Dylan lost his battle. He was recovering from Wobblers surgery, doing well, then was hit with a stroke. Dylan, sweet guy, you were loved, and will be sorely missed. ***  Talos is learning (re-learning) a mannerly wait at the gate, after a self initiated gate crashing incident. Teenagers…http://smartdog.typepad.com/smart_dog/ He thought it was fun anyway, though his human was not amused. Nothing like a teenager to frighten the life out of ya. But his “mom” is a smart lady, and had both the wits to go fetch the hot dogs, and the good fortune to have other dogs to feed them too until Talos brought his juvenile self back inside the yard! Nothing like a touch of competition to make the left out boy give up his chase-me games. My two knuckleheads won’t be getting out much until next week, thanks be to a honkin winter storm. We got about 10″ of snow, and out here in the boonies, that means it takes awhile to get out again. The drive way is 1/4 mile uphill, with three sharp corners. Miss the corners, it’s a 20 foot drop. We sit it out! But the boys get ample reindeer games in the snow, having nothing else to do! There’s enough of it this time that you could literally lose a Maltese! Kenai is 35″ tall and the white stuff is over his hocks, to give you some idea. And prissy boy don’t like cold toes for something as blah as just going potty. I’ll get lots of pics the next few days, but I’d better get this post up while I can. Then it’s nap time, a la pain pill–I’m too old and beat up for all this shoveling! 

[Via http://greatdaneservicedog.wordpress.com]

Dr. Visit

It was only a matter of time before I found the proper auto-immune disease that fit my symptoms. Trust me, it’s not like I WANT another diagnosis….especially one where there are few treatements, but it is also good to know that I’m not just nuts. I had my first doctors appointment this week to discuss with the doctor Fibromyalgia and an arthritis gene that I likely carry. When I explained everything that has been re-occuring he had to agree that it sounds like fibromyalgia. He apologized and said he was sorry because he knows it’s a diagnosis where there isn’t much that can be done about it…I sort of shrugged and said I’ve been dealing with stuff like this for over ten years with my endo, adeno, and ovaries….I might as well have a name to go with what I feel.

I had some blood work done and we’ll find out the results soon. I had the HLA-B27 antigen tested along with some other innflamation markers. We’ll see what comes of it.

The doctor wants me to try Lyrica for the Fibromyalgia, but we’re not sure we can get insurance to cover it, and I get a bit nervous with new medications and possible side effects. I wish I could just treat it naturally somehow.

[Via http://moderatelyinconclusive.wordpress.com]

the life change process begins

In my last post I introduced the concept of my “life change” programme. Given the serious nature of some of Catrina’s symptoms I decided the priority was to begin some work on her physiology so yesterday’s session was run as a typical nutritional therapy session.

First of all I took Catrina’s complete health history from birth right through to now. her main reason for coming is to feel healthy and lose some weight as she recognises that this will help relieve other problems. It soon became clear that all her systems are out of balance but my main concern is her liver – congestion here can lead to major symptoms in all parts of the body and is directly part of her problem with gall stones.

Because of the amount of toxicity that Catrina clearly has I don’t want her to do too much too quickly as this could precipitate a healing crisis. So therefore before addressing diet I want to sort her hydration out and take some pressure off her compromised liver.

I’d asked her to keep a food and mood diary before coming along and noticed that in the 5 days before seeing me she’d consumed:

7 cans of diet cola

1 can lemonade

3 cups of black coffee + 2 cappuccinos + 1 latte

1 snowball

3 glasses of wine

5 x 1/2 litre bottles of water although one day didn’t have any water

1 ginger tea.

I have challenged her to cut down then cut out all the stimulants and increase her water intake. Cutting out caffiene will take pressure off her adrenal glands as well as her liver. Caffiene also disrupts the blood sugar balance significantly which in turn affects appetite and sugar cravings. Aspartame (in the diet cola) has been linked with Fibromyalgia and proven in clinical trials to not only increase appetite but when taken with food increases the amount of calories extracted from that food! To help with the motivation on giving up the artificial sweeteners I’ve lent her my copy of the documentary “Sweet Misery” which gives an excellent account of how aspartame came to be approved as safe in the US by the FDA despite the evidence to the contrary, alongside stories of those most severely affected by this chemical.

Caffiene is a physically additive drug so going “cold turkey” or even dramatically cutting down can result in withdrawal symptoms such as headaches and mood swings. Increasing water intake can negate these but if it doesn’t help then dropping a few drops of coffee or cola under the tongue can relieve the problem without exposing the digestive system to a big dose.

Finally I asked her to start the day by drinking juice 1/2 fresh lemon in hot water very first thing. This is to stimulate her gall bladder and encourage more frequent production of bile as is a very gentle gall bladder flush.

[Via http://whywaittofeelbetter.wordpress.com]

What Happens When A Southern-Fried Mesomorph Marries A Low-Carb Endomorph? Part 2 of 2

The complexity is only highlighted, as one understands… 

Over a decade ago, a team of doctors gave me a diagnosis of Fibromyalgia, Arthritis, and Borderline Lupus. The crippling came on overnight. I could barely function.  In a flash, everything changed for me. Exercise became increasingly painful and avoided. Sleep did not refresh me when my pain eased enough to drift. My mind felt as if it was constantly in a fog and I could not recall common vocabulary mid-sentence. Dieting seemed useless, as I tortured myself only to find the scale would not budge. 

As I began to eat low-glycemic index foods, keeping my sugars to a minimum, I saw the scale move in my favor. It was extremely slow. If I dropped more carbs and stuck with healthy protein choices, my fat melted away. My fatigue and pain would lessen and I could increase exercise. I began supplementing with magnesium and found my Fibromyalgia pain was controllable. 

Sticking to this “healthy” plan came in waves. When my husband worked out-of-town, I always lost a good chunk of fat. When he returned, my weight also returned home. My husband believes I am sneaking abundant food behind his back once he gets home. He does not grasp my struggle. Nor do many of my friends. My well-intentioned friends who insist if I attended Weight Watchers I would lose the weight. They cannot believe I have stuck to the Weight Watchers diet in the past several times and still felt horrible and did not lose weight. I despair that some of those closest to me, who do not live in my shoes, doubt this is true. 

Thus, I am on the horns of a dilemma. It may seem impossible to solve. I cannot rid my home of junk food to make eating healthy easier. I envy women who have husbands who allow them to toss the junk food out and cook healthy. I resent their advice to do the same, when it is not an option. 

I must cook refined foods for my husband or it puts a horrible strain on my marriage and the family unit. My choice is to keep peace with my husband by preparing killer foods, which leaves me fat and miserable, or to split from my husband in order to feel alive and be healthy. However, as logic would have it, there are usually more than the two obvious options. Brainstorming is opening new doors or modifying the existing ones. 

The truth be told, I hate who I have become. This is influencing every area of my life. My health has deteriorated over the last decade since my diagnosis, with major emphasis on the last two years. I am at the crossroads. The paths lead to life or death.

[Via http://unrestrainedconfessions.wordpress.com]

One of those days....

It’s one of those days when I just cannot seem to get the motivation or the strength to get out of bed! Yep, it is a layyyyyzzzzzzzzyyyyyyyy day!!

My honey is amazing!

He knows that I don’t get a whole lot of sleep at night, especially when I am in a bad flare, so he let me sleep in this morning, and got the little man ready and off to school and let me sleep. Am I ever-blessed or what?!? Does it make me feel guilty? In a word, YES! Did I need the rest? Umm…. Yep! So I try not to feel guilty for too long, and rather count my blessings that I have an amazing man in my life that truly “get’s it”, and gives me the time I need to take care of myself…. If I am in a better place, and happier as a result of taking some time for myself, then family as a whole is happier….. It is a hard lesson for me to learn, because I am ALWAYS fighting the feeling of guilt in some capacity, but I am learning to be a little more gentle with myself on days like this, and concentrate on how blessed I am to have someone SO supportive in my life.

I have spent so many days in the past concentrating on all the negative things that being a Chronic Girl has brought into my life.  In a heartbeat it can overwhelm and pull me into a black hole…… And that is a horrible place to be.  It is so easy to let the pain talk for you, and fill your head with crap (for lack of a better term).  God knows I have been there many many MANY times…. but I am trying to combat the crap with a conscious decision to count my blessings every time I feel the dark creeping in….. and it really works for me.

Pain would like me to believe that I am not worthy…… and then I remind myself that my self-worth comes from WHO I am, not HOW I feel.

Pain would like me to believe that I am ugly……. but I know deep inside that my beauty comes from far within, and that the courage I have to fight this pain makes me more beautiful (As it does many for many of you!)

Pain tells me over and over that I cannot live a normal life…. but who the hell wants to live a normal life anyhow?  I can have an extraordinary life IN SPITE OF my illness, and it makes me all the wiser when I can consciously outwit my pain.

It is one of those days that I woke up counting my blessings…. and it went something like this….

Ouch…. oh crap… It’s going to be a long day…. wait, I slept last night!!…. Blessing #1

(Turning over…) UUUGGGHHHH…. crap, that hurt….. oh here comes the burn!  Am I going to get up and get my meds in time before this pain gets the better of me?…… Awww…. my honey left me a little love note by the coffee maker.  He loves me, and I am so blessed….. Blessing #2

Shit, I don’t think I can be on my feet long, the burning is really bad today……. But, my water-glass is right here, I don’t have to fumble with the cabinet door this morning, and my little man is already at school…. So if I need to go lay down on my heating pad until my meds kick in, then I can!…… Blessing #3

I have to head back to bed…. this nerve pain is just killing me this morning!…..

(the phone rings)

Yikes!  Guilt sets in!  It’s my honey, and he is doing errands without me!  I feel so bad….. I hate when my pain takes me away from spending quality time with him, even when it is doing mundane tasks….. I wonder if he will think I am lazy?  I wonder if he will be upset that I didn’t hear him leave?……….. Aww…. he is calling me to tell me he loves me.  He tells me he knows that I needed the rest, and didn’t want to disturb me…. He assures me the world hasn’t come to an end because I slept in… and by the way he says…. I will pick up groceries…. I want to make us Veal Marsala for dinner.  AWESOME!  I don’t have anything pressing to do today, AND I don’t have to make dinner either!  I get to relax today and just enjoy the company of my favorite boys!…….. Blessing #4, #5, #6, #7!

By the time my medication took effect this morning, I had counted at least 15 blessings!!  How can anyone get lost in a big black hole when they have such a great life?

The pain will ALWAYS want to bring me down….. I can’t prevent it from whispering nasty things in my ear from time to time….. but I am finding a way to safeguard my heart from the feelings that come with it.  I am counting my blessings…….

21, 22, 23, 24, 25, 26, 27……….

And all of a sudden, One of those days turns into -

ONE OF THESE DAYS 

I hope you stop today to do some counting of your own.

And thank YOU for giving me more reason to count!

[Via http://gracefulagony.wordpress.com]

Lost

Have you ever heard of people describing non-believers, or those who do not believe in Christ as lost? I am not sure what to think of that term, if it is appropriate at all or not. We are each on different paths, so who is to say who is lost?

In a different light, do you know that feeling of purpose, a feeling of being on the right path, that gives you a sense of knowing, of being in just the right place? I am missing that feeling…I miss that sense of comfort. I miss knowing exactly what I believe in and exactly where I should be. I feel lost.

Feeling lost is so uneasy. There is a type of being lost that can feel like an adventure, but at this moment in time, it doesn’t feel exciting or adventurous, it feels yucky. I am wandering around inside myself, feeling a bit hollow, and searching for something familiar. I am incredibly alone here. I would so enjoy the act of an outstretched hand right now. I call out my name, but all I hear are echos in this cavern. I would like to hear a welcome or a greeting of some kind, something like “I am here.” or “Hello my friend.” But the emptiness is too much, too vast.

It frightens me to feel this alone. It frightens me to question things that usually keep me grounded. And even when I am not questioning lately, I am just not “feeling it”. I want to feel it. I want to know with all of me the things that I can count on, the truths that are ever-present and ever-lasting. Have I gone to some place where it just can not reach me?

Thank God for the drive inside to keep pressing forward. Thank God for the gift of knowing that if I go to bed, tomorrow will probably feel better, at least better enough that I can keep moving forward and continue my search. I am grateful for the gift of being responsible for others, for it gives me so much meaning and reason to put one foot in front of the other, to take a deep breath ( or several) , and to find a way to live the next moment as best as I can. Thank God. At least I know who I want to thank, that I can give thanks to Him and feel sure of that. That feels good.

I may be lost right now. I might not know where I am going. But I will keep moving and sometimes I will just breath and that will be enough…

[Via http://unavitabella.com]

Lessons of the Student Teacher

Tuesday, 1/6’s classes began with a group of three for chair yoga at The Heritage of Raleigh. We built our focus from the feet upward. With the combination of  grounding the feet down (with four points of contact) and centering breaths, we relaxed the lower spine and hips.  One tall student gained three inches of height by aligning his feet, hips, and shoulders to reduce the curve in his spine. We completed class with emphasis on drawing the shoulders down and inward, and the head over the spine and level, by using imagery. The positioning was driven by the shoulder blades grasping a pencil and the head gently pressing  a piece of paper back against the wall. This is Yoga Cotillion!

Next was a Lunch and Learn at the NC Department of Labor, a follow up to my participation at the NC State Employees Wellness Expo.  Seven students and wellness coordinators learned to assess and adjust to a chair’s height and incline. The goal was Sitting Mountain Pose. We reviewed foot awareness as the foundation for properly aligning the hips and the elbows as the foundation for aligning the shoulders. From here we developed centered breathing, isometric arm and leg exercises, and practiced our Golf Swing Stretch to improve our rhythm. Thus, creating new ways to unwind from the stresses of a desk job.

The evening class at The Helen Wright Center (Woman’s Shelter) contained five new sudents. Two students had significant medical issues of scoliosis and fibromyalgia. The smokey air in the building made the idea of expanded breathing capacity a sort of mixed message. We developed our sitting Mountain Pose as slumping while seated was a common problem. The students focused on rolling their shoulders back and down, that Yoga Cotillion again.  We practiced drawing the elbows back for better balance and power while walking. The student with soliosis first was sore but eventually had significant spinal self adjustment and improved range of motion. The student with fibromyalgia had minimal discomfort and reduced whole body tension.

[Via http://youcallthisyoga.wordpress.com]

Fibro background

A little bit of background on my fibromyalgia. I’ve had a history of arthritis since childhood up until my late teens. When I became an adult it seemed to subside with only minor to moderate flare-ups on occasion. Then when I hit my late 30’s it came back with a vengeance. The pain went being mild/moderate to moderate/severe and it’s been at that level ever since.

In the March of 2008, I noticed I was becoming more fatigued and had a general over-all feeling of illness, almost like I had the flu. It felt like I was falling apart. I was so sick. I knew something else was wrong with me. Instead of the pain being in my joints, it was now in my muscles and the aches felt like I had a bad case of the flu. I made an appointment to see my doctor. He pressed on the spots that were sore and then, after me saying “ouch” a number of times, he said, “You have fibromyalgia.”

I was so shocked! I thought he must be wrong. I had flu-like symptoms and I felt like there was something terribly wrong. And I was right. It was fibromyalgia. I had read about it before and thought there’s no way I could have that, I don’t have all those symptoms. So I went home and looked it up on the internet. Apparently you don’t have to have all of those symptoms to be diagnosed with it.

So I thought back to when some of those symptoms first appeared and wondered if I had it back when the arthritis first came back. I still don’t know for sure, I’m still debating. But one thing I do know for sure, my life has been altered. The lives of my children and husband have been affected too. That part hurts worse, knowing this condition has changed others lives. I wish it didn’t. The children have been good sports about it. They don’t complain and are real troopers when it comes to dealing with it.

I’ve decided after much moaning and complaining that the better way to deal with this is to try to be more positive and let prayer work for me. Complaining about it, although therapeutic, may actually be doing more harm than good. So I’ll try to complain less and think “happy thoughts.”  Yeah right.

[Via http://ladybug45.wordpress.com]

Welcome to your Health Forum from Life Works Chiropractic

Hello and welcome! I’m Dr. Matthew Gianforte, a licensed Doctor of Chiropractic at Life Works Chiropractic Health Center, serving the greater Kansas City area.

I’ve created this forum to foster discussion on cutting-edge and proven techniques known to achieve pain relief, overall wellness, and combat disease. I hope you’ll join me here for questions and conversations on your health and wellness.

I’d like to begin by sharing with you a little background on what led me to Chiropractics. As a boy, I was an avid sports enthusiast.  In fifth grade, I sprained my ankle right at the height of basketball season. When my doctor wrapped my ankle and recommended I don’t walk on it for two weeks, I was devastated—it meant an early end to my basketball season.

My dad decided to seek a second opinion and took me to see a Chiropractor. The Chiropractor had me walking pain-free and ready to roll in three days, back on the court the following week. It was through these eyes of a young child and discovering the differences in medical philosophies first-hand that I discovered how we can use our own bodies to heal ourselves.  It was then I knew I had stumbled onto something that would intrigue me for the rest of my life.

It would take me years to learn the scope of what chiropractic care could accomplish, and the difference between Chiropractors themselves. There are some doctors who simply treat symptoms and others who not only alleviate pain, but also work with our entire bodies to stave off obesity, respiratory problems, disease—and even the “virus of the month” that always seems to be circulating in schools and the workplace. I practice the latter, treating immediate problems and preventing others from ever occurring.

I believe whole-heartedly in creating long-lasting relationships with my patients so I can track their health and progress and give them the tools they need to live a pain-free and healthy life. Located in the only licensed neurological relief center in Kansas City, I am 1 of only about 100 doctors in the U.S. who is licensed to effectively treat Fibromyalgia, symptoms of MS, Parkinson’s, chronic migraines, rheumatoid arthritis, and post surgery failures.

Are you in chronic pain? What courses of treatment have you tried? Have you thrown in the towel on medicine or chiropractic care and just decided to live with a certain level of pain? I hope you’ll open the door to a conversation that can change your life.

What questions do you have for me?

Until next time ~ be well,

Dr. Matt

[Via http://lifeworkschiro.wordpress.com]

A little history...

From approx. June 2008 to March 2009, I lost over 70 pounds using a combination of the South Beach Diet (by Arthur Agatston) and the Immune System Makeover (by Janet Maccaro). I felt good. I was looking good. I was fitting into clothing sizes I hadn’t fit into in years. I started sliding a bit, as will occasionally happen even when you have the best of intentions and are “on top of the mountain”. I was on a bit of a slippery slope, but it was still “do-able”. I hadn’t really regained any weight, but I knew if I wasn’t careful, it could happen. Then my youngest granddaughter passed away. My diet went out the window. It was the least of my concerns.

There’s a reason they call it “comfort food”. For me, it wasn’t so much a matter of “eating to forget” as it was “I didn’t care what I ate”. Caring what food I put in my mouth (or when) was a difficult concept to grasp when, emotionally, I felt like I was at the bottom of a deep well, looking up. My granddaughter’s death, quite simply, gutted me.

In the nine and a half months that have passed since her death, I’ve managed to pack back on about 30 pounds. I’ve been wanting to get back on the South Beach/Immune System Makeover combo, but I wasn’t interested in being bothered with it during the Thanksgiving/Christmas season. There’s nothing like starting out a diet in the middle of family dinners, seasonal cookies and appetizers to really make you bomb. And I knew I’d bomb if I tried. Give me a day or so on the diet (rather…lifestyle change), my willpower will be as strong as steel. But at the beginning? Starting during Thanksgiving and Christmas? Not a chance.

The weight gain would have been bad enough. But there’s a reason I was on Janet’s diet back in 2008. My immune system was in the toilet. By the time last March had rolled around, I was a much healthier person than when I had started. Now? I seem to catch colds, infections and other ills at the drop of a hat. Once again, my immune system is in the toilet.

So here I am…I started it today. It didn’t really have anything to do with a New Year’s resolution. My feeling is that if I can’t do it the other 364 days of the year, why would that day make a difference? That said…there’s a bit of a “new beginning” feel to it. I figured I’d start the year out right.

What I’m doing is mostly fresh veggies, meat/protein, and the “right” (ie, complex) carbs from the South Beach Diet and the “No sugar, no wheat, no dairy, no caffeine” and “If it doesn’t rot or sprout, do without” from the Immune System Makeover. Along with nutritional supplements (vitamins).

I’ve used this combination before and was very pleased with how I looked and felt (how I felt is my bigger concern…losing weight is the fringe benefit). My blood pressure was better than it had been in years. And years. And years. I wasn’t hurting. I was even considering taking up jogging…which was a lightning-bolt moment for me. I’ve always hated jogging. But between the weight-loss and the running around (literally) I had to do at work, I found myself actually starting to like it. It was a concept.

But at this moment? Jogging’s not on the radar. Eventually…maybe. At this point, I’ll be happy to have more energy, be back out of pain, and back into smaller pants. I sat down in my daughter’s car a couple of days ago and one side of my pants split. Nice. Granted, I’ve worn those particular pants to death…but it was an enlightening moment. Perhaps the incentive I needed. Thank God (I mean that quite literally!) that it didn’t happen at work.

So here I am, rambling to myself and anyone else that’s interested. I started this journey, originally, at 279.8 pounds. Here I am now at approximately 234 pounds. I’m drawing the line in the sand.

I want my life back.

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