Trusting Your Doctor

I was speaking with a friend who just got results from her doctor, saying her liver enzymes were raised. The doctor advised her not to drink any alcohol. I immediately asked, “Are you taking Ibuprofen?” I knew her knee had been hurting her, and she wasn’t one to avoid over the counter medications. Her response was, “but my doctor said Ibuprofen would not raise my enzymes like that.”

I feel like I’ve heard this type of story a hundred times. You or a friend go to the doctor and something is wrong, and the doctor never gets to the bottom of it. Why? I think the reason is because most doctors fail to listen or ask questions. They’re on a time schedule. They do a quick assessment. They make assumptions. Not all doctors are like this but I feel that far too many are.

Though I’ve had some great doctors in my life, I’ve been disappointed just as many or more times. One of these visits was when I was a fifteen years old. I had my wisdom teeth out. They weren’t quite in yet, but because of previous braces,it was suggested to remove the roots of the wisdoms before they formed, so my teeth wouldn’t become crooked again. And despite how many times I went to the orthopedic surgeon to tell him I was in severe pain, he disregarded it, handing me heavier pain medications. I was taking codeine. The codeine didn’t help much, the pain was so bad. Finally the surgeon on my last visit realized I had an infection and after a few days of antibiotics, my pain was gone! Had I simply believed the doctor was right and my pain was just a result of recovery, what could have happened if the infection had lasted longer?

For my friend, I knew she had gone in to see the doctor because her knees were bothering her. She’s a dancer and her dancing is very hard on her knees. I asked her how much ibuprofen she was taking each day. Knowing painkillers don’t work that great when you’re having chronic severe pain, I knew it was highly likely she was taking too much. It turned out she was taking over the maximum dosage. If the doctor had taken the time to really listen to his patient and ask questions, he would have figured this out. Instead, a patient with ill advice will continue taking the high dose of ibuprofen, further damaging her liver and her intestinal tract, later to find other chronic diseases up ahead.

I feel like our health system severely lacks preventative care. Without a doctor’s listening ear, problems go on unnoticed and as a result health care rises because ailments continue to spike. And when someone gets an ailment such as damaged intestines due to too much NSAIDs usage, autoimmune diseases like “leaky gut syndrome”, IBS, Crohn’s, Lupus, Fibromialgia and RA might be the result. Then what comes next? More painkillers, steroids and other various drugs that will further damage the body, causing more and more harm.

I’m not a doctor, so I can’t say what’s best. And because everyone’s chemistry is different, it’s hard to say how some people will react. But I do think that other choices are out there before you hit the drugs. Exhausting those choices first, in my opinion, is your best bet. For my friend, I can think of a few options off the top of my head that could help. Strengthening the muscles around the knee offer as a natural knee brace. I would suggest that she stops the painful movements in her dance class for a while and instead, works on reinforcing the muscles surrounding her knee. I would make this physical therapy a top priority and a continuous effort. Next, I would use a cream that’s great for the knees and will help bring down the inflammation. And when she’s resting at home and in pain, I would recommend that she elevates her leg and wraps an ace bandage around her knee to help push the swelling out.

Beyond that, of course there’s supplements that will reduce the swelling in her knee instead of using painkillers. For her liver, I would suggest considering three supplements that help the liver function. That I know of, those are milk thistle, N-acetylcysteine and SAM-e. SAM-e is particularly great because it would help her knee and her liver. N-acetylcysteine is a little more complicated because it pulls out toxic metals and requires additional vitamin C. Taking a supplement like Ultra Antioxidant from pro-health would cover the basics of what’s involved with this supplement in particular.

In the end, it’s important that you trust your doctor. If your doctor is not listening and not asking questions, life is too short…find one who will!

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

Really, another "cause" of fibromyalgia... how many can there be?

Recent research hypothesizes that the abnormal pain processing associated with fibromyalgia actually occurs because of a problem with the healing process of fasica (the translucent connective tissue over muscle). 1  The idea behind this research is that fibromyalgia is caused by a dysfunctional healing response of injured fascia, that is characterized by inflammation, HPA dysfunction (Hypothalamus, Pituitary, Adrenal axis), leading to central sensitization (highly sensitized nerves that make every sensation painful).

This is a plausible symptom of fibromyalgia, but the question remains, why isn’t the fascia healing normally?  If the answer is inadequate HGH (human growth hormone) production by the pituitary gland (which is mentioned by the author), then the next questions should be, well why isn’t there enough HGH?  The questioning should go on and on until you get to a root cause.  One thing you will discover as you learn more about fibromyalgia, there are probably 50 different hypotheses for the cause of fibromyagia.  I encourage you, when presented with one of these ideas, that you always ask why.  In this case, the proposed cause is the abnormal healing of fascia, but shouldn’t we be asking why isn’t the fascia healing normally? Always continually ask why until you are at the root cause, not just another symptom or side effect of a deeper underlying problem.  I encourage you to go through this line of questioning, knowing that currently, there is not a completely agreed upon cause of  fibromyalgia, but I think it is stress.

Stress in the form of chemical, physical and emotional stressors, that disrupt your body’s normal physiology/function. Once you have come to the conclusion that stress is at the root of your problem (and I firmly believe it is), your plan should be to figure out how to address the stressors in your life, and treat your symptoms without creating more problems as a result of the treatment, as some medications can do.

I’ve got a plan to help you begin tackling this problem, and to help you remove this stress from your life. I use all natural,  drug free, neurologically based treatments to help you reduce stress.  Here is an overview of the plan, but not very many specific. I designed a lot of this plan, and it’s my intellectual property, and part of the value in my care.  It is also part of my competitive advantage.

1) REMOVE

• Remove all possible chemical, physical and emotional stressors.

2) REPAIR

• Repair your body…there is a lot more to this.

3) Maintain

• Continue some aspects of the plan to maintain your health.

That’s basically the overview of how my program and is designed to help patients with fibromyalgia.  This approach is also successful at treating other conditions because it focuses on reducing the cause of so many of our health problems, STRESS.

If you have fibromyalgia our treatment may be able to help you.  Dr. Shook is available for complimentary phone consultations to see if you could benefit from our care.  If you would like to schedule an appointment or if you have any questions, just give us a call at (828) 324-0800, or email Dr. Shook at drshook@alliancechiropracticcenter.com.

1. Liptan GL. 2010. Fascia: A missing link in our understanding of the pathology of fibromyalgia. J Bodyw Mov Ther. Jan;14(1):3-12.

THIS INFORMATION IS PROTECTED BY COPYRIGHT AND IS NOT AVAILABLE FOR DUPLICATION.  WE DO RANDOM SEARCHES FOR THIS MATERIAL ON THE INTERNET.  IF FOUND, YOU WILL BE CONTACTED BY OUR ATTORNEY. THANK YOU FOR RESPECTING OUR TIME AND WORK.

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God Always Provides a Light

“You, O Lord, keep my lamp burning; my God turns my darkness into light” (Psalm 18:28).

Seventy-year-old George went for his annual physical. All of his tests results were normal. Dr. Smith said, “George, everything looks great physically. How are you doing mentally and emotionally? Are you at peace with yourself, and do you have a good relationship with your God?”

George replied, “God and me are tight. He knows I have poor eyesight, so he’s fixed it so that when I get up in the middle of the night to go to the bathroom, poof! The light goes on, and when I’m done, poof! The light goes off.”

“Wow,” commented Dr. Smith, “That’s incredible!” A little later in the day Dr. Smith called George’s wife. “Thelma,” he said, “George is just fine. Physically he’s great. I’m in awe of his relationship with God. Is it true that he gets up during the night and poof! The light goes on in the bathroom and then poof! The light goes off?”

Thelma exclaimed, “That old fool! He’s peeing in the refrigerator again!”

The Greeks had a unique race in their Olympic games; the winner was not the runner who finished first, but the runner who finished with his torch still lit. We’re often more concerned with the I-wants than with the journey.

There’s a fall season in San Diego when I want to light candles to create a homey atmosphere once the sun goes down. At the same time, the air conditioner still comes on, flickering the candles. I have to choose-do I blow out the candles or turn off the air? I can’t have it both ways. The illnesses in our lives can cause every bit of light within us to flicker and blow, attempting to put out our flame for Christ.

God, I can’t have it both ways; I have to rid myself of some of life’s luxuries and follow Christ in order to keep Your light burning. “Your word is a lamp to my feet and a light for my path,” (Psalm 119:105). Poof! Turn my light on!

ABOUT THE AUTHOR

Lisa Copen is the founder of Rest Ministries and has lived with rheumatoid arthritis and fibromyalgia 16 years. She is trying to figure out how to entertain her 6-year-old over the holidays as she recovers from joint replacement surgery. This is reprinted from her book Mosaic Moments: Devotionals for the Chronically Ill.

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

Repetitive Motion Tied to Trigger Points and Fibromyalgia

Repetitive motion can lead to trigger points, which are very common sources of pain for patients with low back pain, neck pain, headaches, and fibromyalgia just to name a few.1  Repetitive motion injuries are often referred to as cumulative trauma disorders (CTDs).  CTDs are very common in jobs where you repeatedly perform the same movement for most of the day (manufacturing and keyboard work), or where you stay in a static position (working at a desk or standing) without having much variation or break.  Identifying and addressing trigger points are an essential part of treating muscle, joint and nerve pain.  At our clinic we take a comprehensive approach and work with you to reduce and correct the cause of your pain.  If you or someone you know is suffering with pain, trigger points are a likely contributing factor that we have had good success treating.  If you would like a complementary phone consultation with Dr. Shook, please don’t hesitate to give us a call and schedule a time.  (828) 324-0800

1. Starlanyl, Devin and Copeland, Mary Ellen. 2001. Fibromyalgia & Chronic Myofascial Pain, A Survival Manual 2nd Edition.  Oakland: New Harbinger Publications, Inc.

THIS INFORMATION IS PROTECTED BY COPYRIGHT AND IS NOT AVAILABLE FOR DUPLICATION.  WE DO RANDOM SEARCHES FOR THIS MATERIAL ON THE INTERNET.  IF FOUND, YOU WILL BE CONTACTED BY OUR ATTORNEY. THANK YOU FOR RESPECTING OUR TIME AND WORK.

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Well, Another Change

I’ve decided to change the purpose of this blog to be information about Fibromyalgia, Rheumatoid Arthritis, and how I live with them day in and day out.

This will take all the whining out of the other blogs, put it here (where it will belong), and allow me to make the other blogs more internally consistent.

The next post will define Fibromyalgia and Rheumatoid Arthritis. The posts that follow that will detail treatments, medications, coping, etc., as well as my life with these two debilitating and crippling disease entities.

[Via http://turtlemom2.wordpress.com]

The Benefits of Medical Marijuana for Chronic Pain Sufferers

December 5, 2009 – Cannabis, otherwise known as marijuana (or marihuana), has been a topic of debate for many years, not only in Canada, but also in several other countries including the U.S. and the U.K. However, while marijuana for recreational use has not been legalized in Canada, medical marijuana use can be granted for medicinal needs.

The Definition of Chronic Pain

Although “chronic pain” seems all encompassing and thus easily used as a reason for medical marijuana use, the organization of Health Canada very clearly defines what can be considered severe enough pain for medical marijuana. With that said, there are many suffering from chronic pain – due to a variety of reasons – with grants for the medical use of cannabis.

Arthritis, headaches and back pain are the most common, but fibromyalgia, carpal tunnel syndrome, neuropathy and phantom limb pain are also common reason for chronic pain. Continuing pain can also be caused by debilitating illnesses such as MS (multiple sclerosis), scoliosis, osteoporosis and others.

Original Treatments for Chronic Pain

For many, medical marijuana use is a “last resort”, used only after several pharmacologic treatments fail. Typically, the first treatments include pain relievers such as aspirin or ibuprofen. Unfortunately, long-term use can cause serious side effects; even if there is pain relief, it can only be in short periods due to the need for short-term use of the “first line” of treatments.

Should the first treatments fail, narcotic opioids such as codeine, morphine and oxycodone are generally prescribed. Although often highly affective, the concern for these types of narcotics is that they have a high possibility for addiction and abuse. As well, their use is also limited, due to possible side effects in higher doses. The withdrawal symptoms for addictive pharmaceuticals can be mild to painfully severe.

Medical Marijuana for Chronic Pain

For those that don’t respond to the first or second line of treatments, medical marijuana may be prescribed. As well, there are those who prefer not to use man-made pharmaceuticals that have a high rate of addiction or serious side effects.

According to Health Canada, “Dependence is unlikely to be problematic when cannabis is used therapeutically, although withdrawal affects may be uncomfortable. These include restlessness, anxiety, mild agitation, irritability, tremor, insomnia and EEG/ sleep disturbance, nausea, diarrhea and cramping.”

Relief from chronic pain, however, far outweighs the possibility of addiction for many:

- Migraines – Severe, incredibly painful and often lasting as long as 72 hours, migraines can cause serious debilitating issues such as nausea, vision changes, vomiting and a high sensitivity to light and sound. Many of the pharmaceuticals used to either stop or lessen the amount of migraines cause the same issues as the onset of the migraines themselves. Often, sufferers stop treatment because it doesn’t work or because the side effects are too severe.

Medical marijuana, on the other hand, has been a well-documented treatment for many years – even throughout the nineteenth century. Cannabinoids have often demonstrated anti-inflammatory effects, as well as dopamine blocking. It is believed by some that one of the causes of migraines is the lack of natural endocannabinoids in the body, which might explain why cannabis works to decrease the pain as well as the symptoms.

- Multiple sclerosis (MS) – MS is a degenerative disease that attacks myelin in the brain and spinal cord. If you imagine nerves to be like electrical wires, myelin is the insulating, protective sheath around the nerves. The autoimmune system treats myelin as a foreign invader, destroying patches of it and leaving nerve fibers exposed, interrupting their normal function. It is debilitating and painful, causing such symptoms as tingling and numbness, painful muscle spasms, tremors, paralysis and more.

Prescribed pharmaceuticals can cause severe, debilitating medical issues such as seizures, abdominal cramps, dizziness, mental disturbances and other problems. Many MS sufferers prefer to self-medicate with marijuana, and have noticed that cannabis helps them control tremors, spasms and bladder control. Tests have also shown that THC helps reduce pain intensity and sleep disturbance significantly.

Although these two illnesses are common for the use of medical marijuana in relieving chronic pain sufferers, the same can be said for rheumatoid arthritis, spinal cord injuries and even phantom limb pain. While more studies need to be performed to explain exactly how cannabinoids and medical marijuana work, the fact that they do work is clear. Source.

[Via http://hempnews.tv]

Hmph!

So I finally relented and went to see the GP about the nasty acne on my back and he gave me antibiotics for it. Two months’ worth of nasty ones to be precise. And a steroid cream for the contact dermatitis on my finger that’s stopping me from wearing my wedding ring.

So now I feel sick. Damn drugs.

Aside from the annoying acne on my back and the irritating contact dermatitis, things are kind of ok. I have been very busy making Christmas cards, hence the recent absence, and only have one Christmas present left to buy. Still a lot of knitting to do though, so will have to get on with that shortly…

R is much better now, and we hope for more news on L at the end of next week, so maybe more info there in my next post.

Quite boring really…

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

I've said it once, and I'll say it again...

The latest research shows that fibromyalgia is a disruption in the way pain is processed by the brain. 1, 2  If you have fibromyalgia, and you are currently being managed by a physician, therapist, or other health care practitioner, how are they treating you for the disruption in central nervous system pain processing?  I hope your health care provider can answer that question, otherwise, your treatment probably isn’t going to change this very important aspect of decreasing, and normalizing your response to a pain stimulus.

We use brain based therapy (BBT), that is focused on strengthening and building the neural networks of the brain.  BBT works, because of a physiological concept called neural plasticity.  Neural plasticity is the brains ability to strengthen and rewire the existing nerve networks inside and between different regions of the brain.  We identify weak areas of the brain, and use specific therapies to stimulate and strengthen these areas.  BBT, has proven clinically, to be very helpful in the treatment of fibromyalgia syndrome, and in the treatment of chronic pain in which states of central sensitization have been developed.

1 Burgmer M, Pogatzki-Zahn E, Gaubitz M, Stüber C, Wessoleck E, Heuft G, Pfleiderer B. “Fibromyalgia unique temporal brain activation during experimental pain: a controlled fMRI Study.” J Neural Transm. (2009) Jan;2(1):26-40.

2 McCabe CS, Cohen H, Hall J, Lewis J, Rodham K, Harris N. “Somatosensory conflicts in complex regional pain syndrome type 1 and fibromyalgia syndrome.” Curr Rheumatol Rep. (2009) Dec;11(6):461-5.

[Via http://drbradshook.com]

Holiday Stress Tips

The holiday season is right around the corner and for some people the stress is too. There is a great article by the APA, it reminds us that stress leads to the unhealthy behavior. My favorite part:

“Take care of yourself — Taking care of yourself during the holiday season helps to keep your mind and body primed to deal with stress. Pay attention to your own needs and feelings. Engage in holiday activities that you enjoy and find relaxing. Exercise regularly. Eat healthy. Make sure you get enough rest and sleep.”

Taking care of yourself is key. Don’t forget to give yourself a moment to do your Egoscue workout, you will thank yourself later for it!! Happy Holidays!

Read the Whole Article : Holiday Stress Tips

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

Draw Close to God

Submit yourselves, then, to God. Resist the devil, and he will flee from you. Come near to God and he will come near to you. (James 5: 7 & 8 NIV)

In serving those with Chronic Pain through ministry I have noticed that this is the time of year that so many get depressed and down. The holidays are are fast approaching us. Money may be short. Memories from the past that are painful may be haunting, or some have relationships with family or friends that are in dire trouble.

Where does one turn to in a world such as we live in today? With the economy the way it is and the news broadcasting sadness, crime and the lack of peace… one may have the tendency to be down and feel a lack of hope.

Dear friends our hope is in the Lord. When we draw nigh unto the Lord He has promised us in His Word that He will draw nigh unto us. We must resist those things that fill our minds with trouble and turmoil because we know they are not of God.

Leave God’s Word sitting near your favorite chair and every time you feel a negative thought of lack or fear… pick up your Bible and let it speak to your heart. God will speak to you through His precious Word. He will comfort you and give you peace in times that are troubling, and through your physical and emotional pain.

Let us look forward to the days and holidays ahead, being thankful that we have a God that loves us and cares for us, a God that will never leave or forsake us.

ABOUT THE AUTHOR
Pastor Nancy Dittert (Founder of Fibro/Chronic Pain Support Group Ministry) lives in a Berm home in rural central Iowa with her husband & soul mate Patrick. Nancy lives with severe Fibromyalgia, Absence Seizures and Neuropathy. She is still actively involved as a Christian freelance writer and works full time in Chronic Pain Ministry through the Internet. Write Nancy at… nancierose@msn.com and visit her Chronic Pain Web Site at… http://Fibromyalgiahelp.homestead.com/index.html

it's ironic: invisible disease, invisible people & social networking

i found out i had fibromyalgia over a year ago… i started reading books and attempting to learn as much as possible, yet after a year has passed, i feel like i was not taking in as much information in as i should. in the last four weeks, i have learned more than in the entire year, not by books or doctors, but by social networking.

my name is “my foggy brain” and i am a fibromite. i have the “invisible disease” noone wants to believe and noone can see. the strange thing is, social media, by definition is “the unseen”. it is virtual. it is facebook… it is twitter… it is blogging. so i remain “invisible”. i remain invisible by choice. i admit i am new to this. i have only been doing the fibro twitter and blog thing for a month so maybe there is a time when people get together. i’m not sure if i’d be up to doing that… i mean by definition, we are a group of people who don’t travel well. i can’t fly and can’t see a time when that would be a good idea. i can’t ride in a car more than 45 minutes without major pain. soooooo where and how would a “tweet up” happen? don’t get me wrong here… i was just sitting here and found it ironic. invisible disease/ invisible people.

i have been doing the social networking thing for a long while now, i have two twitter accounts (probably not such a great idea for someone who can barely finish a sentence… but i digress). i have an account just dedicated to my fibro friends and it is the best thing i could have ever done. very focused, provides me great information and the people… the people are GREAT! the level of support that the people provide to each other is so nice… i would have never thought it would be so nice. it is like a 24/7 support group. i totally underestimated the value of twitter in this respect. i am kept completely up to date on the latest and greatest news, medications, therapies, etc. AND provided wonderful support… AWESOME!

with my blog… i love the comments. it’s nice to know i’m not alone. i have been reading other people’s blogs and it’s been inspiring… so many people are suffering from fibromyalgia and feel alone and many don’t have a lot of support. it’s hard to read, i want to reach out and jump through my laptop and help. this condition is so tough… it affects people in so many different ways…  the worst part about it to me is that it seems to affect people who in the earlier years were HIGH HIGH HIGH performers. people who went out of their way to help others and were always  doing too much and basically burned out their bodies. now when they need help, they don’t have a support system. just doesn’t make sense.

what do you think?

btw… if you want to follow me… i am @myfoggybrain

thanks for reading! stay cool!

Fibromyalgia-things that may help

There are a few things that I have found very helpful over the last few years to help ease or at least distract myself from fibromyalgia pain.

1. hot water bottle
2. ice pack
3. epsom salts in the bath-eases my muscles and helps me sleep
4. tiger balm
5. essential oils
6. a good laugh!

These might not help everybody but they have certainly helped me.

 

How Can Global Warming Help Us?

Sometimes it takes a drastic solution for a drastic problem.  At the time it seems like the solution is the problem.  Cataclysmic, even.

When Monsanto introduced its Frankenstein plants into our environment people wonder if they realized what would happen.  Of course they did.  They patented the genetics of their “products”–they patented life.  They then sued any farmer that ended up having their “product” show up on their farm.  Sued them for a LOT of money, threatened them, ruined them.  Plants are funny.  They are living things, and they tend to play by Nature’s laws, even when we don’t.

Pollen and seeds tend to be made to travel.  That is how Nature made plants to spread.  Monsanto genetically altered plants, and the new DNA has begun showing up not only in new places not originally planted, but through cross pollination.   That’s right–Frankinstein’s dick works, and he knows how to use it.

So what, you say?  Well the genetically altered plants cause all kinds of problems.  They have already contributed to super antibiotic resistant bacteria, poison resistant pests, and herbicide resistant plants.  They also cause health problems like tumors, organ dysfunction, and death.  The geniuses at Monsanto put suicide genes in their plants, saying that that way they would die after being alive one year, and that would minimize the potential threat of cross-contamination.  Great.  Now that gene will spread as well, which makes plants infertile, which means that they cannot make seeds and fruit–you know, our food.

But, you might say, if they have a suicide gene, they won’t be able to spread.  I would answer, yeah, and everything else they have done so far has worked so well.  Guess again.

Did I mention that they have test plots of trees, as well as many other types of farm foods?  Oh, and fish?  Fish that escape into the wild population.  These are freak fish.

I have not done a great job here of really shedding light on this–there are video documentaries that are very intelligent and thorough.  Look for videos on Monsanto, and GMO and BT .  Watch them.  Then you decide.

Global warming may be our only hope, because that may be the only way to wipe out what they have done.

Autoimmune Disorders in Women: What to Look For and What to Tell Your Doctor - InjuryBoard.com - October 24, 2009

Posted by David Mittleman

October 24, 2009 10:00 AM

Here is a daunting fact: one in five Americans has an autoimmune disorder, which occurs when the immune system attacks itself. Moreover, about ¾ of those with an autoimmune disorder are women, or about 22 million women total. However, there is an even more disturbing trend amongst women with autoimmune disorders: 40% of those who are eventually diagnosed with an autoimmune disorder were initially told that they were “too concerned with their health”. Essentially, a large percentage of women with serious immune problems are passed over and told they’re hypochondriacs.

However, armed with some simple information, you could prevent yourself from falling into the category of women who suffer needlessly. In fact, health experts say that the best way to protect yourself is to educate and empower yourself by learning names, risk factors, symptoms, and treatments for the seven most common illnesses women face.

• 1. Polycystic Ovarian Syndrome—the most common type of hormonal disorder among women of reproductive age, and one of the leading causes of infertility. It stems from having levels of androgens, a male hormone, that are too high. The most common symptoms are irregular periods (or none at all), more hair on the face, chest, back and limbs, moderate-to-sever acne, baldness, and rapid and substantial weight gain that seems impossible to control. There is no single way to diagnose PCOS, but your doctor can check your reproductive organs for signs of mass growths using a pelvic or vaginal ultrasound. However, it is your responsibility to first inform your doctor that you have the aforementioned symptoms. Otherwise, the doctor may never know that there is a serious problem because the illness is so easily written off to bad diet, lack of exercise, or other “simple” explanations for seemingly benign symptoms. While there is no cure for PCOS, it can be controlled with birth control pills and Metformin to help regulate the hormonal production.
• 2. Fibromyalgia—doctors aren’t sure what causes this painful disorder, which results in symptoms that include pain, numbness and exhaustion, and often begins in early or middle adulthood. While there is no lab test or physical exam that can find fibromyalgia, doctors can do a tender-point exam, which identifies places in the body that are painful to the touch despite no immediate physical signs. The test is positive if 11 out of the 18 spots tested come back positive. There is no way to cure fibromyalgia, but sufferers can take over-the-counter pain medications to quell the pain. Furthermore, stretching, exercise, and massage can ease pain as well.
• 3. Chronic Fatigue Syndrome—at least 1 million Americans are believed to have CFS. However, doctors are unsure what causes the extreme fatigue that is common to the disorder. Some studies indicate that it could be related to dormant viral infections, hormonal imbalances, and stress. The common symptoms include decreased physical or mental activity that doesn’t improve despite long periods of rest. Loss of concentration and unexplained muscle pains are also common symptoms. In order to diagnose a patient, doctors must rule out other conditions that cause similar problems, such as Lyme disease or thyroid problems. While there aren’t any treatments or cures, Ritalin has been effective in some patients in reducing fatigue. However, the treatment is still experimental.
• 4. Lupus—there are four types of Lupus, however the most common is systemic lupus erythematosus. SLE is a nightmare: a malfunction in the immune system causes the body to attack itself, including wreaking havoc on the skin, joints, lungs, kidneys, nervous system, and blood. Doctors suspect that hormones play a vital role in the development of the disorder, particularly because women are usually diagnosed between the ages of 15 and 45. Overall, lupus seems to strike during or following a pregnancy. The most common symptoms include fatigue, fever, joint pain and stiffness, chest pain, memory loss, and skin lesions. A diagnosis of lupus is confirmed if a patient has at least four symptoms: a facial rash after exposure to sunlight, painless mouth sores, kidney disease, swelling of the lining around the lungs and heart, and low counts of red blood cells, platelets, or white blood cells. While there is no cure for lupus, mild cases can be treated with over-the-counter painkillers. Moreover, anti-malarial drugs have proven useful in stopping the progression of the disease, while corticosteroids counter inflammation in the joints and lining of the heart and lungs. Overall, doctors suggest leading a balanced life since emotional stress seems to trigger episodes of lupus.
• 5. Multiple Sclerosis—MS strikes when the immune system attacks the protective covering of cells in the brain and nervous system. Eventually the destruction of the cells causes a breakdown in communication between the brain and body. Women are three times as likely to develop MS, and most scientists believe there is an environmental link like exposure to viruses or toxins. Classic symptoms include numbness or weakness in the limbs, dull pain, fatigue, and vision problems. Despite these symptoms, it is difficult to diagnose MS and to distinguish these symptoms from others that are related to other diseases like Lyme disease. However, tests for these other diseases can help rule out any other options and ultimately narrow the diagnosis to MS. Currently, those with milder symptoms from their MS are treated with corticosteroids. Other sufferers with more serious symptoms are put on an immunomodulator drug that helps prevent a complete relapse in muscle weakness and other symptoms. Exercise is also a crucial component in maintaining strength, muscle tone, coordination, and balance.
• 6. Rheumatoid Arthritis—RA attacks the lining of the joints through the immune system and can cause swelling, aching and potential deformities. The symptoms are easily detectable: simple activities, such as climbing the stairs or opening jars, can cause tremendous pain. It is difficult for doctors to diagnose RA, however, blood tests can reveal an antibody that is related to RA. Treatments include alpha inhibitors, or drugs that fight the inflammatory proteins. A second treatment is called DMARDs, which help to slow, reduce, and prevent joint damage. Finally, corticosteroids can cut inflammation around the joints, but become less effective over time.
• 7. Irritable Bowel Syndrome—simply stated, sufferers experience serious bowel problems including gas, diarrhea, and constipation, as well as abdominal cramping and pain. Doctors can usually pinpoint the problem by using the “Rome criteria”. In other words, if a patient experiences 12 weeks of symptoms out of 12 months, they most likely have IBS. The treatment is also very simple: eat more fibrous foods. Furthermore, some patients have found relief by using peppermint oil, a natural antispasmodic that can ease abdominal pain.

While most of these autoimmune disorders cannot be cured, they can still be controlled via simple methods. Be forthright with your doctor if you experience symptoms that you believe could be related to an autoimmune disorder. Most importantly, be persistent! If your symptoms bother you and interfere with your daily life, there is probably a more serious problem that needs further attention.

COMMENT:  Posted by Joanne Drayson

October 24, 2009 3:49 PMYou can not rule Lyme Disease out by a blood test blood tests are only about 50% reliable for Lyme being antigen tests.

All the above illnesses mentioned in this article could be caused by Lyme Disease and with those symptoms should be checked out by a Lyme Literate Medical Doctor through ILADS.

Currently our doctors follow the IDSA 2006 Discredited Guidelines, these are currently being reviwed. Presentations shown at the July IDSA review hearing show considerable evidence proving seronegativity and persistent infection. Details on the IDSA website.

Food for Thought: Healing From Within...A Positive Diet & Positive Thinking for Better Health - David Martin, Executive Director, WPA Chapter

“The Doctor of the future will give no medicine,
but will interest his patient in the care of the human frame,
in diet and the cause and prevention of disease.”
-Thomas Edison

That quote is from my recent Arthritis Radio guest’s website … Janet McKee, a board certified Holistic Health Counselor.  Here is an excerpt from my intro to that show:

I don’t know if you’ve seen the iphone commercials – where the tag line in “we have an app for that” … want to order a pizza – we have an app for that … need directions … need to book a hotel – we have an app for that – amazing technology.  It has changed society as we know it … something else that has changed are the levels of stress and anxiety … depression, obesity … overall wellness … are you stressed – we have a pill for that … depressed we have a pill for that – overweight, have pain – we have a pill for that … everything is quick – never enough time and one area that really suffers is what we eat and consume.  Drive-throughs, coffee shops, energy drinks, processed foods, vending machines, microwaves – this has changed society too… and has changed our overall wellness.

I used to think my father was a “fanatic” over what I called his “health foods” … his attention to what he ate and how much of it always resulted in some good-natured jokes as the rest of us stood around with our quarter pounders … he was right.  He was right and is now the healthiest person in my family.  A family that has Rheumatoid Arthritis, Psoriatic Arthritis, JRA, Fibromyalgia, Lupus, auto immune disease,  and more… is there a connection?  If you ask Janet Mckee … you would get an enthusiastic yes!

Considering the pills and the drinks and the processed and fast food we consume — what we should be considering what is on the end of our fork.

Please let me know what you think of the interview on Arthritis Radio. Leave a comment and your personal story.  I should add – Are we suggesting you drop your meds and eat “vegan”?  No… but a better diet, a diet and lifestyle that suits our particular bodies can only lead to feeling better.

On part 3 of the interview we also touch on the power of your mind.  I recently read a book entitled “You Can Heal Your Life” by author Louise Hay.  She has a DVD of the same name and the potential that exists of how our bodies and life can change depending on our thoughts and outlook is simply astounding.  How many times have we awoken to a gray, rainy day not having received enough sleep, dreading going to work, having too much on our plate, not feeling 100% and not looking forward to the day ahead.  We plant the seeds for a miserable day – and that is what we get…  What we expected from the moment we opened our eyes.  What would have happened if we had greeted the day being grateful, thankful for the rain and our work day ahead and thoughts of how we expected to feel good.  A different outcome, I suspect.  Louise Hay has been quoted talking about “waking up and thanking the bed for a night’s sleep”!  Now that is grateful.  The idea has been around for centuries.  I first heard of it as a child and came across the book, “The Power of Positive Thinking” by Norman Vincent Peale.  It’s been most recently brought back into popular culture through books like Louise Hay’s and “The Secret”.  Organizations like Abraham Hicks and best-selling authors like Chicken Soup for the Soul’s Jack Canfield and Michael Beckwith have promoted positive thought for a better life. Our thoughts, expectations, imaginations and life-outlook can have an impacting effect on our health and how we feel.  It’s a journey worth taking.

A better diet, positive thoughts, feeling better… sound good?

Check out the interview! To listen to Arthritis Radio Episode 11: Parts I, II, and III - please visit http://arthritisradio.podbean.com or simply search Arthritis Radio in the iTunes store to download it as a free podcast!

We have recently posted another AFWPA “Rheum for Wellness” blog entry about Janet McKee and the “food for healing” aspect of this topic.

View Ashley’s entry, “Food for Thought: Healing from Within” HERE.

To learn more about Janet McKee, holistic health counselor and drugless practitioner, please visit her website at http://www.janetmckee.com

Thank you, and be well!

- David Martin

Executive Director

Western Pennsylvania Chapter

Spas, concerts and coffeehouses

The fibromyalgia has started to wear me down. I have pushed myself too much in the past week, but every experience has been worth it. Finally meeting my penpal after 15 years and seeing his country – worth every second of the fatigue and pain. The fibro has mostly asserted itself through my muscles and the bone-weary fatigue. My feet are especially stiff and sore; my lower back throbbing. Today I am also fighting a moderate fibrofog – head in the clouds, difficult to make decisions, takes me longer than normal to understand when people speak to me (and remember, they are speaking German and I have been trying to answer back in German…). It has only really hit today. I think the adrenaline of meeting Andreas and his family has started wearing off.

The spa on Friday helped immensely – I would be in worse shape today otherwise. Andreas, Stefani, and I spent a lazy afternoon at a spa. There are spas like this all over Austria. Envision a glamorized swimming complex. Not nearly as simple and plain as American community swimming pools, not as ritzy as American spas, not as big and loud as waterparks – a civilized combination of the three. The spa is situated over natural hot springs. For all the pools, the water is piped in as is, no tampering with the temperatures. It’s a massive complex compared to American swimming pools, yet still manageable. There are three big outdoor pools of varying temperatures, all of them hot. One is a salt water pool. Inside are a number of cold, warm and hot water pools, and a whirlpool (kind of like a hot tub). Rows of lounge chairs ring the pools. People will come for the entire day with a bag full of books and magazines.

We just spent the afternoon there, but by the end I was so relaxed and my muscles had untightened to the point my pain was less than it has been the entire trip. Soaking in the hot water, sleeping on the deck, people-watching…why don’t we have these spas in the States?

I am determined not to let the recent fibro flare impact my last couple days in Europe. I still managed to see a lot today, but I am trying to be smart about what I choose to do. I have had a classic Viennese day in a way that has allowed my body to rest. In lieu of a walking tour, I jumped on the tram that circles the city center on the Ringstrasse as a low-impact way to see and get around to some of the sights. Spent the afternoon sipping a melange (Like an American latte. Don’t ask for a latte or they will give you hot milk) in a classy but comfortable Viennese cafe. Vienna is rightly famous for its cafe culture. These classy coffeehouses are all over the city, holdovers from the glamorous days when Vienna was the capital of the sprawling Hapsburg Empire. Here you can sip a coffee all afternoon, read piles of newspapers and chat with new acquaintances. I found a cafe called the Braunerhof just a block away from the Hofburg. Caught up on the news and listened to waltzes from a live ensemble of musicians.

I also attended Mass at the Augustinian Church in the Hofburg neighborhood. This was an inspired idea on my part – I could sit for a couple hours in the splendor of the church and listen to the music of the organ and choir. This church is famous for putting on a musical Sunday Mass and the choir even sells CDs. Today’s music was from Hayden. I got shivers from the music – here I was sitting in a gloriously lit Gothic church as the heavenly church music of Hayden lifted my spirits, just as his organ and choral music was meant to be heard. Not in a concert hall, but here, in a church as the people celebrate Mass and the Eucharist. One of the most amazing concerts of my life.

Hopefully tomorrow I can start to hit the streets of Vienna in full sightseeing force, but for now, I am living Vienna through her coffee and music, and my body is all the better for it.

America’s sweet tooth

Sugar. Also known as: Brown Sugar, Corn Syrup, Dextrose, Fructose, Glucose, High Fructose Corn Syrup, Honey, Evaporated Cane Syrup, Lactose, Maltodextrin, Maple Syrup, Rice Syrup, Sucrose…I could go on all day, but I think you get the point – we’ve come up with over 50 names for sugar. Food manufacturers love this because they have to list ingredients in order by weight and many food makers use multiple sugars so sugar doesn’t show up so high on the ingredient list.

Thanks Egoscue Portland for a great blog…. Read the Rest of This Blog

Something got me yesterday

Not really bad.  But enough to make it into my dreams.  Since I’ve been diagnosed with FM I’ve had nighttime bears clawing me, lions biting me and a host of weird situations reflecting my sleeping pain.  Last night, my dream hips would not work; everywhere I needed to go (urgently) was like walking through thigh high slush.  Fortunately I discovered a way to get around by sliding backwards on my rear dragging my useless legs along.  That part wasn’t too bad as each slide got longer and smoother until it felt like I was flying along…backward.

Anyway…

What got me yesterday?  I had no obviously big deviations from the diet.  In fact, it was my brother’s birthday breakfast and I entered a restaurant for the first time since starting the Diet Experiment.  I studied my options and came up with the idea of eating before I went and just having tea once I got there.  That worked.

But then Jacob and I got in the van to go home and it wouldn’t start.  Argh… Kevin was home and on his way in a matter of minutes.  Leaving Jake and I sitting in a cold car staring at his leftover box.  I knew there was bacon inside…I could smell it.  So I ate it. (I asked politely first…but Jacob is pretty easy.)

We got home and I felt no ill effects from the single bacon strip.  Okay. So far so good, I hoped.

Dinner planning was for a celebration.  Kevin got notice of not one but TWO parts he’s been cast in!  We decided on steaks.  Beef steaks all around and I skipped the potatoes.  Had a green salad with some new dressing.  It was a vinaigrette with basalmic vinegar and it was organic and the ingredients didn’t list anything really bad.  Except “organic sugar” and “organic spices”.  Kinda vague.

So what was it that got me?  Dietary?  Corn in the bacon processing or maybe the nitrites? Something in that dressing…that tasted so sweet?  Or was it mechanical since I’m working on painting three full sized papers; they are on my dining room table (my studio is too messy) and it’s just the wrong height.  I have to bend over just slightly and reach as I paint.

Well…there’s nothing to do today but stretch it out, stay aware and watch my food.  It’s still only about a 5 or 6 out of 10 but I’m greedy these days.  I’ve had so many great days with pain hanging around a 3 that I don’t like going back at all!  So we’ll see how it goes today.

Brain Based Treatments For Pain Not Previously Available

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#1  Chronic back pain

#2  Chronic neck pain

#3  Chronic Sciatica or leg pain

#4: Spinal Stenosis

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#6: Chronic shoulder and arm pain

#7: Fibromyalgia (FMS)

#8: Balance Disorders/Dizziness

#9: Numbness/Burning/Tingling

#10: Migraine or chronic headaches

#11: Hand or foot pain

#12: Restless Leg syndrome

#13: Insomnia/lack of sleep

#14: Tinnitus/ear ringing

#15: Carpal Tunnel Syndrome

#16: Chronic fatigue syndrome (CFS)

#17: ADD/ADHD

#18: Peripheral Neuropathy

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A really good day

Yesterday, I had Princess Ramsey over from 11:30 to 8:30.  That’s a long time of babysitting plus to make things harder, she got sick during the day.  Poor baby got so unhappy that she went to hide on the dog’s bed under my computer desk and fell asleep!

That’s the bad news.  The good news is that my energy level outlasted her.  I ate simply and cleanly with a protein shake for breakfast, leftover chicken soup for lunch and a crock pot roast with roasted veggies for dinner.  Snacks were fruit.  Easy, right?  Plus before she got here I did some dishes, picked up a little and took a shower.

It was crazy.

When I was in the shower I lost my balance and fell over.  Yeah, I’m so graceful.  I rammed my back against the facet head.  Ouch.  I immediately panicked because these small falls have caused flare ups that last for days.  But guess what?  No big problems.  It’s sore just where I hurt it but no “pain echo” and no flare.  I just cannot believe the difference.

Some days I want to go on a speaking tour or write a book or something because I wonder how many other people are out there with fibromyalgia that could be helped by eating differently.  It’s changing my life.  Not just back to where I was BF (Before Fibro) but better than I remember feeling for a long time.

I’ve decided to try and focus on the big four; gluten, soy, corn and dairy.  I know I can get away with eggs in small amounts…same with cheese but I’m still trying to avoid these for the most part.  Soy and corn are the hardest because they sneak in the weirdest places.  Like corn in my table salt (dextrose).  And soy in the tuna fish.  But compared to what I’ve been putting into my body for a long time, the idea is “progress, not perfection”.

And compared to how I’ve been living for the past 4-5 years, just avoiding some foods and focusing on others is pretty dang easy.

Hallelujah, can I get an Amen!

Long Time, No Post: a journey through work, school and life during 2009. Pt 2

Days like today remind me why its so important to take my medication on a regular basis.  I’m sitting at my desk and I’m so miserable I can barely focus on work.  Without my antihystamine my hives flare up. I have red spots on my face and arms and its all i can do not to scratch.  Without my antianxiety pill my tics are all over the place. My left arm keeps flailing and my fingers keep shooting out making typing very hard. I try so hard to reign it in so its not noticable but in the end that just makes it worse for me. Without my lyrica, my fibromyalgia sparks pain and discomfort in my fingers, neck and arms. I’m hurting today and I just want to roll up in a ball and cry and not be here. It makes it very hard for me to be the “Kim at work”, with the smiles and the offers of help and the getting my work done on time. I feel out of place, from my hair (can hair really hurt?) to my toes.

The last year has been a hard one for me.  I have been diagnosed with a movement disorder called Choria, which was later changed to Motor Tics – TS.  The medication that I was originally given worked wonders for about three months. After that not only did the movements come back, but they came back more often and in more limbs. My Neuro wouldn’t change my meds so I found a new one who specializes in movement disorders and we are working on finding the right combonation that will work for me. For the most part, we are on the right track.  As long as I take my pills and try to stay unstressed, the large embarrassing arm waves and movements have declined.  They have been replaced by small quick tics by my hand, wrists and fingers, as well as a small one in my face that i noticed yesterday. The doctor feels that this is an improvement though so we’ll see where it goes.  I was also diagnosed with the Fibromyalgia, which explains why I was always in pain and why certain places always hurt when I was touched.  There are a lot of people who do not believe in this disease and find it a cop out that doctors use when they aren’t sure what the problem is. To be honest, i dont’ care if the word or the disease is real. I’m in pain. Everyday. And if they can do something about it, I’m on board. I was crying in bed every night becuase my arms, legs, fingers and toes were on fire with pain, from joint, to muscle, down to the bone I could feel the pain. My Lyrica isn’t at the right dose yet but we are working on it. I was recently told about a Chiropractor that works with Fibro patients and I may look into it.  I long for a time when mixing cookie dough with my boys or even just blow drying my hair doesn’t incompacitate my hands for hours or days.

In the meantime, I have had more blood tests, scans, exams, that one person should have to go through in one year. I heard once that it takes up to 7 doctors and 10 years for a woman, and a fat one at that, to find the right diagnosis and doctor willing to help with compassion. Since I have been complaining about some of my symptoms for well over ten years and I have seen about 7 doctors, I’m thinking they may have a point. I have a good team now though and I look forward to moving into 2010 healthy and heappy.

And my wonderful husband, who was working from home today, is driving in with my pills as we speak. I would never have asked (and didn’t) but he is there for me in amazing ways and so he makes the trip and I could be back on track by this afternoon.

I should mention that its fall now and I am so happy with the weather and the changing colors. I love autumn!

The chill in the air, the smell of wood burning, the colors! Its all something to smile about and I’m glad its something I can focus on when times are harder like today.

Documenting a bad day ...

Owch I’m sore!

Yesterday was a really bad day ok? I tried to write about it but my brain was such mush all i could come up with was “I feel …….”  My fingers struggled to type, my brain failed to compute and my whole body hurt.

I didn’t sleep well, or much, and got out of bed feeling like a sloth. My night time symptoms were still there, all bunched in with some bad-day morning symptoms and i just wanted to sleep. It might have been wise to just take the day off and rest but I had things to do, kids to get to school and besides.. I’m on this “DON’T TELL ME WHAT I CAN’T DO!” kick at the moment where i intend to show the whole world (or at least myself and my trusty sidekick) that i CAN do anything that i want to do! (admittedly, it’s not going well so far)

So i made the breakfast and the lunches, walked the children to school, saw zo to her classroom and spoke to my supervisor about when to start back, all the while concentrating very hard on looking and speaking as normally as possible, even though my brain had turned to mush and I was walking about in a complete daze. Then I walked home and proceeded to make the shopping list. Sounds easy right? On a bad day, nothing is easy. After the exertion of the walk and the ‘acting’, i was exhausted and just wanted to sleep but i had to force myself to sit quietly and focus on writing the list, it ended up something like this:

• bread
• milk
• veg
• dinner x 3
• stuff for lunchboxes
• baking
• fruit

pretty vague huh? I just had to hope for some clarity to hit me before I entered the supermarket. Next was catching the bus and going to the furniture store – more having to speak to people -eek!  What I do on a bad day is to practise over and over again what i’m going to say to people so that I don’t forget. I also think of how the conversation may go so that I have some words ready and don’t go blank when asked a question (how embarrassing) It went pretty well at the furniture store with my pre-prepared words, until right at the end when the store Guy said something that I hadn’t anticipated or prepared for. I don’t even remember now what he said to me but I know that I replied “phew”. This totally made no sense and store guy gave me a very strange look but In my mind, I was thinking “phew” because our transaction was complete and i could leave. Oops, I guess I said it out loud.

Next I had to get the groceries, and I completely wasn’t in the mood. What I really felt like doing was crying, curling up into a little ball someplace and sleeping for ever. My tingly foot was back and along with some calf muscle cramping, was making me walk slow and stupid. I felt as though all strength had drained out of my arms and legs. I did quite a good job of buying groceries, all things considered. It did however take a great deal of focus and concentration, which is just as exhausting as the being vertical and moving about stuff. I crept through the aisles methodically, list in hand, willing my mind not to drift or fuzz and hoping that I wouldn’t bump into anyone I know, lest I be expected to actually form words and make them come out of my mouth.

Amazing – I actually finished shopping just in time to catch the bus! (saving me cab fare home:) and I had bought just the right amount of groceries that I could carry them to the bus stop – just!  I was sitting on the bus feeling rather proud of myself – I had done everything on my list and would be home by 11:30 – when suddenly I smelt a foul smell:( Harry had thrown up all over himself. Harry lives at the nursing home nearby and while he isn’t really that old, he is quite ’special’. Harry often shows me a picture or toy that he has brought on the bus with him, He also coughs when he is nervous and if he coughs too much he throws up. It’s never actually happened ON the bus before, I wonder why he’s allowed out without a carer? Anyway, the smell was putrid and I felt really nauseas and had to make a decision…

1. Get off at the next stop and call a cab (more $$)
2. Get off at P.St and walk a block home (less 15 min, more walking)
3. Do the full loop ( +15 min, dropped to my door)

I opted to get off and walk, which was fine at first but I soon realised that my Groceries were far heavier than anticipated. I ‘carried’ 6 bags, precariously wobbling and stumbling all the way. I stopped 4 times, three to rest and once to rearrange the contents of a busted grocery bag. In the end I was hurting, sweating and silently chanting ‘I can do anything’ as I crossed the finish line!  Bleh, my arms were sooooo sore!  Still, I had groceries to put away, washing to hang and children to pick up, so on I went.

By 4:00, I had fetched the children home, fed them home made caramel tarts (tin of caramel + bought pastry cases + sliced banana = easing of guilt feelings for not home baking for children) and lay on the lounge room rug, dying. Or at least making dying noises. I was hurting bad, my arms and back and shoulders and neck especially were aching and burning and throbbing and stabbing with pain. I was close to tears and couldn’t get comfortable, let alone rest or sleep and I resorted to paying the children in gold (in gold sounds better than 2 bucks) to come and massage their poor dying mother. Usually I would never ask them to do such a thing, but it hurt bad:( Luckily they have been quite competitive lately so they fought over who could massage me the best and the longest.

After an hour rest, I managed to take in the washing, cook dinner, and ‘bake’ some muffins (but mostly spray the kitchen with muffin mixture off the electric beater) with a whole lot of help from my wonderful girls (this time for free;) -they even helped me to do the dishes and went off to bed happily, insisting I go take a bath. THE BATH – yum. I figured if taking magnesium supplements was helping my muscles then soaking in the stuff must be good right? And it was sooo relaxing and I went straight off to bed feeling much soothed.

Now to today: I still didn’t sleep well. What’s new;) and I woke up feeling VERY VERY sore and sick but my brain is less mush today (I can mostly make and say words:) My back is very sore from where the girls rubbed it, It hurts to lift my arms, my legs and feet are very sore and I have a sore throat and sniffles but I am feeling somewhat more positive. On a bad day it is so easy to slip into doom and gloom thinking, worrying about the future, worrying about when I’ll feel well, how I’ll get things done. It frightens me a lot when I have trouble thinking and doing the simplest things, I feel like a little old lady, like i’m past my best; and that’s a depressing thought to be having aged 31.

I try to educate myself and read all I can about Fibromyalgia, M.E and Hashimoto’s but sometimes it serves only to frighten me more. Yesterday I read about women in their 20’s and 30’s who have given up work and driving because of these conditions, people who need help to shop and do housework, people who are housebound and can’t even go on holiday.  I read about studies that show chronic pain like fibromyalgia causes brain shrinkage resulting in more often brain fogs and lowering IQ, It makes me very sad and scared and all at the same time I am struggling to explain to those around me just how I am feeling. Because it doesn’t show on the outside, people have no idea what it’s like to live in this screwy body of mine, how much pain and weirdy-ness can be going on while I appear and strive to look ‘normal’ on the outside.

I don’t want to constantly whinge about the things my body is doing to me, but at the same time I wish there was someone else who understood, who asked, who cared. It’s lose-lose;) anyways, enough wah wah wah, time to finish up with some positives:

• today I completed my much hated subject ‘legislation’, assignments x3 done!
• washing is done!
• kitchen is cleanish.
• bathroom is clean and cleared out ready for painter tomorrow.
• I have wonderful children x2 who think i make the best caramel tarts and muffin/scone/thingys ever!

m:)

I keep thinking of that saying

“hope for the best but plan for the worst”

- I haven’t decided if i like it or not yet, kinda scares me.

And the Fibro Finally Rears Its Ugly Head...

I arrived in Krakow on the night train from Budapest this morning, feeling a bit groggy and disoriented, but otherwise in great spirits. Found my hostel, got some breakfast, and strolled around the Stare Miasto (Old City) a little before the mad rush of tourists. Felt perfectly normal tired. Then it hit. A severe exhaustion and unbearable lower pack pain. 20 minutes from my hostel. In the middle of my wanderings of Kazimieriz, the old Jewish Quarter. Frankly, I am ticked off. (That’s the nice version – keeping it family friendly for everyone back home.)

I debated continuing with my sightseeing. There was a free 3 hour walking tour of Kazimieriz I desperately wanted to go on. There was a period film being shot in Market Square. I hadn’t even peeked inside the huge St. Mary’s Church yet. I debated, and realized that pushing myself today would mean bedridden tomorrow. So napped for 2 hours and now here I am, feeling slightly sore, but much improved. The lesson – ALWAYS listen to your body, even if you don’t have fibromyalgia.

A couple things of note: In Budapest, before catching my train, I visited the House of Terror museum on Andrassy ut. A somber way to leave a new favorite city, but I am glad I checked it out. It is housed in the former office and prison complex of two notorious agencies in Hungary: the Nazi-supported Arrow Cross (much like the Gestapo) and the Soviet-supported AVH (secret police). Here the people of Hungary were terrorized, tortured, and disappeared into the night. Just walking into such a building gave me the chills, but the exhibits furthered my horror. An impressive array of artifacts, photos, video footage, and art installations with powerful messages. For example, a maze of walls made of bricks of pig lard in a room about the shortages and rationing Hungarians experienced under Communism. Wandering the maze to find your way out, you contemplate all the invisible mazes they had to go through just to get the basics for survival. Another exhibit showed the two uniforms of the Arrow Cross and AVH back-to-back and spinning slowly, demonstrating how the secret police switched sides, or “turncoated”. Most powerful to see were the actual rooms used to imprison and torture Hungarians citizens. It is estimated that 1 in 3 Hungarian families had someone killed, tortured, questioned, or imprisoned by these organizations.

You may ask, “Why visit such a disturbing museum on your vacation?” I reply, it is disturbing, yes, but as members of the human race where we have perpetrated countless horrors on each other, it is important that we are witness to what happened, that it make us uncomfortable, and cause us to ponder and questions what happened. It is also an important piece to understanding the Hungarian people today.

On that disheartening note, I will head back out into the city. Krakow awaits my full attention and my back is at least 30% better.

Questions about posting

You know, for the longest time I’ve refused to write in this blog. I didn’t feel like I should say anything as I was busy wrestling with unpredictable symptoms and fatigue.

Still managed to fly out to New York to hang out with my husband…but spent most of my time in bed.  Bummer.

One of the other problems I have with using WordPress is that I generally have to write the post in Word (don’t trust my spelling or grammar!), move it over to Notepad to strip it of any coding and then post it in WordPress.

And if I want to post any links or pictures I have to wait until I’ve already got it into WordPress before I can do that (just remembered that) so of course there is always last minute editing!

Not exactly as organic as writing an email and hitting “send”, is it. I’ve still managed to send emails, pissing off kids, relatives and real estate agents with abandon, but no posts even though I have LOTS to say.

I’m curious. How do you write your posts? I’ve been looking but can’t find a whole lot of info on it…so I figured I’d just ask. What flow works best for you?

WHERE DO YOU WANT TO BE WHEN YOU HAVE PAIN?

DAY 33: I am glad I didn’t play it safe and stay home. It is also important to develop good memories during this time of illness.

So here’s the question, “Does it matter where you are when you are experiencing pain?” I have been thinking about that question since Friday while Greg and I were driving to Banff to meet our four adult kids and our grandson to watch our girls run in the Melissa 10KM run. I am still suffering from the effects of the treatment I had completed this week that pulls the mercury from my body so that I have even more symptoms to juggle. Fortunately, on Saturday I was still able to walk around the Banff area to cheer the girls while they ran. Our time here has been enjoyable but always requiring a concerted effort to “ignore” my symptoms. As I lay in bed last night with increasing pain, I began wondering if Greg and I were crazy to continue this holiday. But then I began thinking, “Would experiencing these symptoms be any easier if I was at home?” Yes, in many ways it would be! It is easier to go lie down at home and it is easier since I don’t feel the pressure to “push” as hard because I don’t want to jeopardize other people’s enjoyment. However, the flip side of those negatives is that I have the pleasure of being out of the house and the pleasure of spending time with my children and husband. Even though it has been a struggle, I now have memories that I would not have if I had stayed home. How sad to think I might have missed the following if I had chosen to play it safe and had stayed home rather than coming here for the weekend:
• Listening to a radio station that plays only 60’s music and seeing who could name the singer first – while Greg and I were driving to Banff
• Watching the girls participate in their run and to cheer them on
• Walking with my grandson who suddenly stopped to hug a tree
• Chatting with my son while he pushed the stroller; I especially enjoyed his story about a 3 year old boy who has 6-pack abs and can do chin lifts since his body has developed so much muscle
• Watching my daughter salivate over her pizza – dairy free that she hasn’t been able to eat for months since she has been on an elimination diet for health reasons
• Waking up in the morning and having breakfast with everyone
• Watching David show us how to do the Tree Pose since we girls were saying how hard it was to keep the leg from sliding down the leg
• Watching Greg try doing the Tree Pose, perhaps not quite as successfully!
• Listening to my son’s enthusiasm about the 100 Day Challenge that a motivational speaker has encouraged people to take by working hard to achieve a particular goal in a short period of time
• Appreciating my kids’ concern and kindness as they cope with a sick mom (or mother-in-law).
Today, Sunday, the kids return home and Greg and I begin our holiday. And even though I have considerable pain this morning, I look forward to sitting in the car with my seat slightly reclined and enjoying the drive. I think we will also listen to the radio station that plays only 70’s music to see if I can better compete with the driver when it comes to naming the artist of those songs!

A Cup of Joe In The Morning Talks To Egoscue

Wednesday Sept 25th at 9:30am, Seaview AM 960 show Cup of Joe in the Morning had Egoscue Palm Beach Garden’s Clinic Director Shawn Taker on talking about Egoscue. Thanks Angela for taking a moment and calling in to talk with Joe and Shawn.

Check out the conversation.

Don’t forget to listen to Shawn, Wednesday Sept 30th at 9:30am on Seaview AM 960 “A Cup of Joe in the Morning”!!

If you can’t catch us on the radio listen in to the show live on the web.

From the brain to the heart

whose that knocking on the door...

“We believe there is an invisible pathway from the brain to the heart,” a wonderful biofeedback therapist I worked with told me.

“We do not understand this theory yet, but we see changes, such as with lowering blood pressure and heart rate, along with reducing physical pain when people think of what they are most grateful for in life.”

She laughed and said she knew it sounded silly about there being a path from the brain to the heart, believed to be activated by thinking grateful thoughts, but I didn’t care if it was silly.   If I can learn how to lessen the physical pain from fibromyalgia and calm some — my spirit;  for there are many things that trouble and disturb my spirit, then I’m about trying it.

As I sat there connected to the computer, through a wire with a clamp on the end for my index finger, I was surprised how the graphs changed as my thoughts changed.   Sure enough, when I thought about what I am most grateful for, the prettiest colors in the graphs would show up stronger; purple, violet, orange and blue.

My therapist would get so excited.  “Look,” she would say.  “Look how much the graphs changed when you talk about your dogs!”  She was always surprised in our sessions.  She said I could go from one spectrum to the other more drastically than any of her patients.

I would talk about upsetting issues or the pain I live with and then change to thinking of and talking about my dogs.  The changes that occurred were visible on the computer screens, which I guess,  is the essence of how biofeedback helps a person.

The right side of the computer screen is where the colorful graphs were and on the left side was one column, which was a light purple color, and when I talked about my dogs this graph would usually reach the highest peak.

“That is the invisible path from the brain to the heart,” she would say.  She also said it barely showed up with some people and on average, a high peak was considered to be in the middle.

I could tell her about my 4legged Egyptian insect hunting dog and cause the entire screen to light up everywhere!

Once I began noticing on my own, outside of the sessions, the physical changes taking place in my body when I got upset, that awareness helps to  back up for a second.  Sometimes, one second is enough to change many minutes, hours or days.

If, as soon as I see the changes begin in my body when I get upset, I become aware of it, then it is possible to stop a cycle of thoughts that invariably and inevitably bring about what I don’t want.

It is my dogs I think of when I want to feel grateful.  I am grateful for my human family too, of course, but dogs give me a unique sense of purpose and peace that I don’t feel anywhere else.

Maybe it is because I get lonely and they give me so much comfort that way.  Maybe it is because they never get mad at me and are always forgiving when I am sick.  Maybe it is because they never put me down or criticize me.  And for sure, they appreciate anything I do for them.  They trust me, they treat me with respect and they are never sarcastic.

My sweet girl dog does get mad if I spend too much time at my desk and will at times, come over and start barking loudly right in my face.  The only time this causes problems is when I am on the phone with one particular friend of mine.  He gets irritated and says it hurts his ears.  She will sometimes do this when I get on the telephone.

I’m mostly glad that she barks in my face sometimes.  It’s usually just what I need.  Get up and go out.

Walking my dogs makes me feel good because it makes them happy.  The girl dog that barks in my face also smiles a lot and I get the greatest satisfaction out of knowing that I can do something good and not fail.

“You have to think grateful thoughts though,” the therapist told me.  “Positive thinking does not produce the same effects as does grateful thinking.”

Practicing feeling grateful helps me with depression and anxiety.  It helps me not to feel so hopeless about the sad things that I cannot control.  Feeling grateful helps me keep my chin up so to speak.

I’ve also been introduced to a series of books I like titled, The No. 1 Ladies Detective Agency, the main character, Mma Romatswe,  is a very grateful person.  She is always talking about how grateful she is for her country, Botswana, and the cattle, the rain, traditional values, and any little bit of growth that comes from the long anticipated rains.

Some say you must play the hand you were dealt in life.  Well, some of us got a pretty sad set of cards.  The game we win is one where we continue to keep on going in the face of what at times seems completely unbearable.

Some say if you are having a hard time then think of someone else having a harder time.  Well, sometimes this helps and sometimes it simply doesn’t.  I always question the source of advice.  I find that people who have not had to live with chronic severe pain cannot give advice on the subject.  Not the kind of advice I need, which is the kind that could actually do me some good.

I recently read an awesome book that enlightened me about the people of  present day Afghanistan.   Reading the book definitely gave me a fresher perspective on my own life here in the US.  The book, A Thousand Splendid Suns, just as ‘Mma Romatswe’ does in the stories from, The No.1 Ladies Detective Agency, helps me to be grateful for the basic necessities in life, such as  shelter and food.  I’m also aware that I can walk outside,  go into town and not think about getting tortured and/or killed.

Reading these books has helped me to think of the simple things in life we can be grateful for.  This is important for everyone I suppose, but I know it is important for people who face hard challenges every day they live.

I still have the same problems, even though I can say I am in much better shape and circumstances than so many people are.  I just have to keep on doing the best I can with what I have and am capable of doing.

I remain grateful for all that I have.

Mostar, Bosnia - Off the Beaten Path

I have returned from a walking tour of a small city called Mostar, in Bosnia Herzegovina, and I am still processing everything I have seen. It is a city in the process of rebuilding from the war in 1995. Restored, occupied businesses and homes sit next to blackened, looming ruins. Pockmarks and blast craters still mark even some of the restored buildings. Lush trees grow out of crumbling ruins, boarded up and graffitied with warning signs to stay out. Next door are bustling cafes and groceries. Young people stroll the streets. It is a fascinating juxtaposition, and a lesson in resilience.

My host’s mother drove me from the bus station to the hostel, and along the way she pointed out landmarks and explained what happened during the war, which she lived through. When Bosnia Herzegovina declared independence from Serbia during the breakup of Yugoslavia, the Serbian army attacked the town from the surrounding hills and mountains. At first, the Muslim Bosniaks and Christian Orthodox Croats fought side-by-side against the Serbs, but soon they also turned on each other. Heavy urban fighting commenced in the streets of Mostar, and we drove along what was the front line between the two sides, a modern street called the Bulevar. At one point, all three sides were fighting each other simultaneously.

The rebuilding continues. The first major rebuilding project was the famous Mostar Bridge, which was a city landmark that spanned the river dividing the Muslim Bosniak and Christian Croat sides of town for generations. It was bombed to pieces during the fighting, and the rebuilding was a symbolic healing process for the city. They rebuilt it with help from UNESCO and used the traditional building techniques. I walked across the Mostar Bridge today along with a herd of tourists, and found myself actually getting emotional. We take so much for granted in the States, and the news of war on TV seems so far away. This has been important for me to experience.

The city itself is a mix of Croats and Bosniaks. Both are Bosnians, but Croats are Orthodox Christian, and Bosniaks are Muslim. Mostar was part of the Ottoman Empire for centuries, where Christians and Muslims lived together side-by-side. It’s a European town, but not one we would normally picture. Cafes serve strong Turkish coffee (fantastic!), there are multiple mosques, minarets dot the cityscape, and calls to prayer echo out over the loudspeakers. There is even a colorful bazaar to haggle in.

Shed all your stereotypes about Muslims here – the women of Mostar walk around freely, dressed like any other European and talking on their cell phones. I did observe a few women wearing colorful head scarves, but Nina explained they choose to wear scarves as a visual show of their faith, much like many Christian Americans will wear a cross on a necklace, and Orthodox Jews will wear the skullcap.

I suppose I haven’t mentioned my health much lately. Rest assured I am holding up! The first few days I was constantly tired, but I allowed myself periods of rest, and even took a long nap yesterday afternoon. The fatigue has not been debilitating, and I hope to continue to pace myself so well. The physical aches and pains are another matter. My feet are sore, and I give myself foot massages every night. My back and shoulders are stiff, and I do stretches as much as possible to keep it from getting too bad. I will need a long massage when this trip is over!

Tomorrow I head back into Croatia. For now, I lunge back into the swirling sea of humanity that is Mostar.

Where I jump in and defend pills...

When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug.  Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads.  For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them.  It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care.  It was incredible and refreshing.  She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back.  That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications.  She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s.  This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.

So, now there are pills.  Seven of them.  Only two daily use, and the rest to be used “as needed”, which is something I rather like.  The Lyrica and the Topamax are gimmies, because I actually get some benefit out of them.  They improve my quality of life in a general manner.  Those are the the red and white one and the tiny yellowish one next to it (the jelly beans in the picture were my idea of a funny…HA!  C WUT I DID THERE?).  Lyrica helps me not want to throw myself out the window (which would be a feat w/ the window protectors on our sliding door-sized windows).  In other words, it means mobility and movement, once I have adjusted to the side effects.  Yes, it takes a while to adjust, but it is worth it.  The Topamax, and anti-convulsant, is given to me off-label for the constant Not Migraines that I have (24/7 for almost 5 years now).  It dulls the daily pain, and sometimes gives me mostly headache free days, which liberates me to do silly things, like stand up.  It also has side effects, such as a metallic taste in my mouth.  But I know this, so I expect it, and the benefits outweigh the gains, and eventually they fade.  For now, I switch to plastic cutlery and all is well with the world.

Sometimes, though, the headaches still break through.  That is where the pill above the Topamax comes in.  If you have had major surgery you might recognize it.  It’s Promethazine, or Phenergan, usually prescribed for nausea caused by anesthetic, but has an off-label use of relieving headache pain, and being a mild sedative.  This I can cut in half and only use during those times I have headaches not held off by the Topamax, and greatly reduces my need for a narcotic pain reliever.  Because it works as a pain reliever it also helps me sleep when the pain is bad.  Always a good thing.

Which brings me about to the big pill…my buddy, House’s and yours, Hydrocodone, or Vicodin.  I have given up any delusions that I can live my life without one, and my doctor gently agreed.  She understood my concerns of addiction and dependency, but reminded me that regular OTCs won’t help me with the breakthrough pain that my regular meds won’t cover.  Something I often forget is that Vicodin does something that a lot of scoffers don’t think about (something apparent if you watch House); it gives me some of my life back.  It lets me do frivolous things like get out of bed, cook meals, go places with my family, and even have sex with my husband, which is something that many doctors don’t consider in patient care.  People are too quick to assume that someone using Vicodin is automatically an addict, or that they aren’t “managing their pain”.  But those of us using Vicodin are doing exactly that are managing our pain, with the advice of our doctor, in a manner that is right for us and our families and loved ones.  That choice is between the patient and hir doctor, and family/loved one if zie chooses to share.  If.  A 30 day supply, thanks to the Topamax, Lyrica, and the as-needed Phenergan will last me about 90 days, give or take.  It’s a total win for me.  Plus, my doctor is so awesome that she has given me her email to allow me to renew the prescription without a lot of hassle.

The pink pill is Meclizine, or Antivert.  It is an as-needed pill for dizziness and nausea caused by Labrynthitis.  It is chewable, and I have to take it with a small amount of food.  The dizziness was a new symptom, because for some reason my tympanic membrane has been billowed out for quite sometime, causing me intermittent vertigo.  Again, since it is as-needed, I don’t mind it so much.

The last pill is for the chest pain I have been having, which is apparently the result of a suspected spastic esophagus, and is Zantac.  It is another as-needed pill.  The chest pain is rare, and new-ish, so there is no reason to have a regular med.  I can also try to take Tums first, the doctor tells me, so the need for this med might be less than that.

There is also a cream for the inexplicable rashes that recently have developed on my arms and legs, which sometimes respond to a topical Benedryl, but sometimes doesn’t.  It is a steroid, so it is another thing that I can take only if I need it, and only if Plan A doesn’t work.

I can not stress enough how wonderful it is to have a doctor who prescribes things that I can take only if I need them.  This keeps me from taking too many things at one time, and reduces the chance I will have an interaction complication.  I also can not stress enough that pill are not all bad all the time.  It is certainly true that there are probably people out there who abuse pills and take too many of them.  It is probably equally true that some doctors are too quick to prescribe too many meds too quickly to make a patient go away.  But at the bottom of the medication issue is the fact that how much or how many meds a person takes is between a patient and hir doctor.  It isn’t the job of a drive by concern troll to judge or offer suggestions on the care agreed upon by those parties.

Oh My Aching... Leg?

Certain low back conditions give rise to more than just low back pain. For example, leg pain can be more intense than low back pain, even though the cause of the leg pain is coming from the low back.  When this happens, many patients complain that they have “sciatica,” which refers to radiating pain that starts in the low back and extends down into the leg.  When the intensity of leg pain is worse than the low back, it can make patients wonder, “…where is my problem really coming from?”

To understand this better, a short “anatomy lesson” is appropriate. The spine can be divided into two halves, front and back. The structures in the front half include the larger, heavier bones called vertebral bodies and the shock absorbing cushions that lie between the vertebral bodies called the intervertebral disks.  The disk is like a jelly donut where the center is liquid-like and the outer portion is a tough, criss-cross pattern cartilage arranged like the rings on a tree stump. There are also ligaments that hold the vertebrae and disks tightly together. The back half of the spine includes the spinal cord, nerve roots, as well as the small joints of the back called facet joints.  Every movable joint has a joint capsule that helps lubricate the joint and limits the amount of movement, along with surrounding ligaments.  The larger, heavier vertebral bodies and shock absorbing disks carry the majority of the weight (approximately 80%) while the smaller facet joints carry much less weight (only 20%) but are more responsible for guiding the movements of our back.

When leg pain is present, it can be caused by either a pinched nerve, or, an inflamed facet joint.

When a nerve is pinched, the cause is usually from the intervertebral disk where the jelly-like center leaks out and presses on the nerve that goes down the leg, commonly referred to as a “herniated disk with sciatica.” This type of pain is quite specific, easy to describe and often extends below the knee to the ankle or foot.  It can include muscle weakness, numbness in certain areas of the leg, and bending forward increases low back and leg pain while bending backwards reduces the leg pain (and sometimes the LBP).

When a facet joint capsule tears (technically, called a “sprain”), the pain is “referred” down the leg in a generalized, non-specific manner, usually described as a “deep ache,” often hard to describe and usually does not go below the level of the knee. Here, it feels better to bend forward and worse to bend backwards, of which neither movement changes or affects the leg in a specific way.  Disk related leg pain carries a potential for surgery if all non-surgical approaches fail, while facet joint referred leg pain rarely requires invasive treatments or surgery.

YOU MAY BE A CANDIDATE FOR CHIROPRACTIC CARE FOR LEG PAIN  FOR A FREE NO-OBLIGATION CONSULTATION CALL OUR CUMMING GEORGIA OFFICE  770-888-4288

  www.backsmarthealth.com

2 months of time lost?

Has it really been over two months since I’ve written on this blog?  It can’t be . .  . can it?

I guess it is.  Let’s see if I can reconstruct that time.  If I can, it means this fibro fog challenged brain has pulled off a minor miracle.  What was the date of the last entry?  Hmmm . . . July 3.  It is over two months!  I’d better get started.

July 4 – 11 was the rest of our vacation in Alaska.  We spent 5 glorious days in Homer, AK – a place that actually felt like home to me.  On the shores of Kachemak Bay, across from mountains that drop into the ocean and include volcanoes, Homer sits up on bluffs primarily.  It does include a spit of land that juts about 4.5 miles out into the bay, only 19 feet above sea level.  It is aptly called Homer Spit.  The spit is lined with rocky beaches that include campgrounds – you camp right on the ocean.  It is also lined with small shops and restaurants.  Since the climate in Homer is not very much different from MA, I knew I could live there.  The only fly in the ointment might be the light issue – the Alaskan summers are fine: daylight all but about 5 hours; the winters, of course, are the reverse.  For someone with SAD (seasonal affective disorder), like me, it could spell trouble.  Still, I think I’d move in a heartbeat if someone told me to.

The rest of July was a blur of laundry, catching up on mail and construction.  We had our bathroom redone from the studs out.  Our only bathroom!  You see the problem with that, don’t you?  We did have a portable toilet outside the back door.  It wasn’t too bad except when you woke up in the middle of the night with an urgent urge and had to get dressed before you went outside.  I doubt the neighbors would have been looking for a half-naked woman streaking to the porta-potty, but the neighborhood skunk might have.  That wouldn’t have been pretty.  It took nearly three weeks to complete the estimated ten day job.  The joys of construction.  Now that it is done, we love it and that has made the “patience” we exhibited worthwhile.

July 31 saw us attending a Gordon Lightfoot concert at the Twin River facility in Lincoln, RI.  The concert was good, but we thought that he looked old and not really well.  It turns out that, two years before Lightfoot had suffered a burst abdominal aneurism and spent a week or so in a coma.  Put in that light, he looked really good for someone who nearly died!

We took a day trip to Maine.  We went to Perkins Cove and walked the Marginal Way.  I had never walked the whole way before, so I was proud of myself.  My husband started having palpitations this same weekend.  He was so unnerved by them that I had him call the doctor on a Saturday while I drove home from Maine.  He had them during the week for three weeks, with exacerbations each weekend.  Finally, the third weekend, the doctor told him to go to the emergency room to be checked out.  They actually kept him overnight that Saturday and had told him they would do a certain test the next day.  Great, except that the cardiologist had not shown up by 3 PM.  They told my husband they didn’t see anything to worry about, so he decided to check himself out and do any follow-up testing on an outpatient basis.  The “hospitalist” (new term for an attending physician who takes care of you for your doctor) must have been offended by the idea of this man deciding to take matters into his own hands and leave.  He told my husband that he could be fine OR he could have a blockage, drop dead and die.  That latter part was in direct contradiction to everything we had been previously told.  Needless to say, we left anyway.  Since even after testing, they told my husband they did not know the cause but the palpitations were completely benign.  No treatment was necessary. 

My husband would not have stayed in the hospital another night unless they’s told him he was dying.  Why not?  We had another concert to go to – the Moody Blues at the Mohegan Sun Resort and Casino.  What a great concert they gave!!  They sounded and looked as good as ever!!

I have a lot more to say and not much time left for it right now, so I’ll stop here with the concert and pick up tomorrow (I hope) with the rest of the catching up.  Right now I have to catch my breath and let my fingers rest!

Things Lost and Things Found in the Fibro Fog..... part 3

This is going to be a rough one to do….and keeping it honest will be painful in many ways and the boundaries of just what has been lost and what has been found can become blurred ….. even now I pause and think about deleting this and doing something else….. a sure sign I really need to do this one. So what have I lost that could be more painful than some of the things I’ve already posted? The core of my strength or was this what I found? That’s why the boundaries can be blurred……I’ve said before that my church had been there for me and their help was part of what kept me and my children with a roof over our head and food on the table….. with out their help I have no doubt that we would have been homeless after I became too ill to work and lost my job when my employer was told I was going to file a claim on my long term disability insurance that I had through them {whole another story}. So am I counting the help from my church as a found or loss? I am listing it as a loss….. a very deep loss. Everyone was willing to help us…… but the more involved they became the worse things got ….. they didn’t understand my illness…. they would look at me and see nothing wrong…… why didn’t I clean my house better? After all I’m there full time….. just what did I do with all my time? Why can’t I make it to church every Sunday? I was told to go back to my former employer and tell them I would go back to work and not have any sick time and would take any job they had open even if it was in housekeeping{his words not mine}….. just note I was a RN for 23 years and had topped out on my hourly rate…and the person at my Church telling me this worked in the administration of my former employer….. he just didn’t get it….just a quick note here so that I won’t forget this same person about six months later both his wife and daughter were diagnosed with FMS….. I pray for them….. but back on topic….. things got much worse when my COBRA insurance ran out and I needed help with my medications…..one cost over $500. for 30days and that one was a pain medication. I had finally gotten through to my doctor that I needed pain relief and over the counter wasn’t working and we had already tried everything else. NOW everyone at my church thought I was a drug addict and one also thought I was an alcoholic and would come up and smell my breath when she said she wanted a hug……the tremors in my hands can be really bad some days….I was told that it was only pain and I should just ignore it and keep on going…. I was weak…..one said he had cancer and went through chemo and THAT was pain….not what I have…. I was told that a person had cancer and worked up to the day before he died, never took any pain medication and never missed a days work…. I just needed to put my mind to it and try harder and just learn to live with some pain. Even after I spent a week in ICU tiring to fight off a viral respiratory infection …. not once but twice! Ended up with brain damage, diabetes, high blood pressure, COPD and on O2, sleep apnea, psoriasis, psoriatic arthritis and a whole long list of other stuff……then it was OK to take some medications to treat those things but not the pain medications…. for that you just must be tough. I lost a big support group that I thought would always be there and not be judgemental…. people who I thought knew me enough to know I wasn’t faking it just to get and use “drugs”  pain medication….. people who now look at me differently  when I do try and make it to church… the talk and whispers or the way they react when they see me and abruptly turn the other way and walk off at a brisk pace…{not an all out run but close!}. The one place I could always count on to feel peace, comfort and safety within the wall of that church building and I say that because no matter where I’ve lived and attended the church of my faith none felt the same as the one where I went the most while growing up and was baptized . {we attend a church based on where we live so if you move they will mail your church records to the church we will assigned } Now this is a lot about what I lost and if you are reading this you most likely are thinking is this a novel or a post and just how long is the “found” gonna be? Well, it will not be all that long because what I found was that my faith should not be about the people in my church because they are just that “people” no better and no worse than me…. yeah that’s right… no better than me. They have faults and are just as able to misunderstand things as the next person….. I had put them up on a pedestal and made them perfect and thought they had the power to read my heart and soul…. and I found I was wrong. I found that my faith and strength comes from a high power than them or me. I found that the feeling I got at church wasn’t because of the people inside the building but was the spirit of my higher power that resides with in those sanctified walls……. now if I could go and sit in a room alone at my church I’d be there in a skinny minute…… OK a very fat minute I know I’m slowwwww now. Also I can find my peace even at home as I study my church’s teaching. Yes, I miss the fellowship that I lost but I have found where my faith truly comes from and that is more important. Now that I purged this from my heart maybe someone else can benefit from this lost and found….. maybe that is why I have felt the need to tell this or maybe just needed to do this for me….. either way now I can move on in peace until our paths cross again…….. Lila

PLEASE NOTE IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOUO WILL COME TO MY WEB SITE BLOG AT WORDPRESS  http://www.lilabyrdakabirdladybyday.wordpress.com