Sara's Sweet Escape

2012-01-01T19:54:00.001-05:00

Hello all! Hope you have been doing well & enjoyed your holidays.

I took a couple months off but I’m back & hoping to keep sending out my daily quotes.

I hope that 2012 is a wonderful year for you and full of peace, love, positivity & happiness!

Xoxo

Sara

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When you wholeheartedly adopt a “with all your heart” attitude and go all out with the positive principle, you can do incredible things.

~Norman Vincent Peale

Forever Friends

2011-05-11T15:41:00.000-04:00

The following is an article from The Charlotte Observer dated Saturday May 3, 2003 that I just so happened to keep.

'Forever friends' are the ones you plan to keep. ~Some friendships stay viable for only a certain season in our lives~
by Lynne Hinton

"What is a 'forever friend'?" someone asked me recently when they saw the title of my new book.

I thought it was a reasonable questions, since I dedicated the book to three women, designating them as my "forever friends." Before answering, I considered what each of the three of them meant to me, the relationships I share with them, their undisputed importance in my life.

Then I gave my answer:
A "forever friend" is the one you plan to keep the rest of your life.

People come and go in and out of our lives. Many of them we call friends. Often the friendships are made because of convenience, a shared event or location. We work together, take classes together or live near each other. Our children are in the same day care. We go to the same gym.

As our lives change and the convenience factor is removed, we find that many of these friendships are no longer viable. We lose touch because we realize that once there is effort required to see each other, to sustain the friendship, we find that we really don't want to make the effort. Those friendships are important but only as long as time and location permit convenience.

There are friends who are our friends during a particular season in our lives. We were in school together or ran around together when we were younger. We played on the same sports team, studied the same major in college.

Then as the years go by, as we age and develop who we are, we find that we have less in common with those friends. The changes we have made across the years separate us. We let those friendships lapse, allowing them to become part of our history, a part of our memories.

Treasures to keep

Then there are those treasured friendships we choose to keep.

Over years and seasons, throughout changes and developments, across time and space, even amid conflict and disappointment, these friendships require attention and commitment and we gladly give it to them. We do so because, frankly, we couldn't imagine our lives without these relationships.

We have decided that these friendships are important. They matter. They count.

These are the few important persons who have passed of our tests. They have proven their loyalty because they have seen us on our worst days. They know us inside and out, cleaned up and messed up.They have heard our worst secrets, watched us fail and succeed, fall down and rise up.

They have laughed with us, cheered for us, fought for us and most of all, cried with us. They have said at the most critical moments in our lives, "It doesn't matter what happens, what you have decided to do, I will always love you."

Those are the words of a true friend, a keeper.

The "forever friend" is the one you count on to be truthful and loving, loyal and committed. They are the ones you count on in crisis and celebration. The "forever friend" is the one you will attend to, stand up for, love with unrelenting fierceness because you know that person will do exactly the same for you.

These are the chosen companions, the lifers, the ones you plan to grow old with.

These are your "forever friends."

Learn the Facts about Fibromyalgia

2011-05-10T16:35:00.004-04:00

May 2011 Action of the Month provided by The American Pain Foundation

Learn the Facts about Fibromyalgia

Fibromyalgia affects an estimated six million people in the U.S. but is an invisible condition. You can’t tell someone has fibro by looking at them. Chances are that you, or someone you know, has fibromyalgia. May is Fibromyalgia Awareness month, and APF’s Action of the Month is to learn the facts and share the Is Fibro the Cause? toolkit with friends and family members.

The valuable toolkit is full of helpful tips, resources and vital information on how to recognize fibromyalgia’s signs and symptoms as well as guidance on seeking treatment. Inside is a worksheet to help track symptoms, nutrition tips to overcome fatigue, ideas for alleviating stress, and essential strategies on coping and living well. Download Is Fibro the Cause?.

Living In Harmony

2011-04-12T23:35:00.005-04:00

Don't know where I got this but wanted to share...

When people are overwhelmed by illness, we must give them physical relief, but it is equally important to encourage the spirit through a constant show of love and compassion. It is shameful how often we fail to see that what people desperately require in human affection. Deprived of human warmth and a sense of value, other forms of treatment prove less effective. Real care of the sick does not begin with costly procedures, but with the simple gift of affection and love.

In the practice of healing, a kind heart is as valuable as medical training, because it is the source of happiness for both oneself and others. Not only do other people respond to kindness when medicine is ineffective, but cultivating a kind heart is a cause of our own good health. Similarly, inner peace can be found in prayer and meditation, but it is also profoundly important that we bring that inner peace to bear in practical ways in the generous service to others.

There is a connection here with the practice of nonviolence. Nonviolence is something more positive, more meaningful than the mere absence of violence. It means to respect the rights of others, to be concerned about their well-being, based on a sense of compassion. Today, there is a growing global awareness of what this implies, for the application of nonviolence is not restricted merely to other human beings. It also has to do with ecology, the environment and our relations with all the other living beings with whom we share the planet. Since human beings are basically gentle by nature, I feel that we should not only maintain gentle, peaceful relations with our fellow human beings, but that it is also very important to extend that same kind of attitude towards our environment and the creatures who naturally live in harmony with it.

I believe that it is essential that we extend our understanding of each others spiritual practices and prayers. This is not necessarily in order that we can adopt them ourselves, but because to do so increases our opportunities for mutual respect.

Sometimes too, we encounter something in another tradition that helps us better appreciate something in our own. Consequently, I hope that people of all faiths as well as those who do not believe in a religion will find inspiration and understanding that in some way contributes to their own inner peace. And I pray that through inner peace they too will become better human beings and help create a happier, more peaceful world.

May all who are sick and ill

Quickly be freed from their illness,

And may every disease in the world

Never occur again.

And as long as space endures,

As long as there are beings to be found,

May I continue likewise to remain

To soothe the sufferings of those who live.

~The Dalai Lama

Comfort And Fortitude

2010-12-22T19:25:00.004-05:00

Our old word "comfort" did not originally mean ease, it meant "with fortitude, with courage." The ability to face a situation with courage regardless of the outcome does give a kind of comfort that is possible in no other way. This comfort or courage is not evoked by putting our confidence in a sure thing or in some guaranteed safety, but rather in some risk whose outcome is uncertain. The person who can face difficulties "with courage" will find that he is buttressed from within. Just as a soft balloon yields to the touch and a hard balloon resists outside pressure so one who has sufficient internal resistance can withstand forces that press in upon him. An ability to endure whatever happens "with fortitude, with courage" should enable us, in the root sense of the word, to have comfort.

From Moments of Meditation by Paul S. McElroy 1961

FM Sort of Day

2010-12-15T22:11:00.004-05:00

I have really tried to remain positive for almost a year regarding my fibromyalgia. I have refused to let it take over my life and control what I can and cannot do. As I have mentioned before in previous entries, my worst months for fibro flares have always been February, August and November. This year has been a strange one when it has come to the weather which usually plays a big role in my flare-ups. It is December 15th and I am having one of the worst days I can imagine. Actually the last several weeks have been miserable. Today though I am in such severe pain I just want to scream at the top of my lungs! I am having so much trouble typing this but I thought that I would "journal" today on here.

I wish I could describe it but I can't. Yes as usual, I feel like I have been hit by a train, but the weird sensations & pain in my arms, legs, shoulders, neck, etc. right now are so annoying that they are overpowering my every thought. I can't even watch the movie that is currently on. I can't even believe that I am able to even put a straight thought into what I am typing. Maybe I'm not. Maybe this makes no sense whatsoever. Maybe I'm just venting in my own way.

I really hate to complain & discuss my fibromyalgia with negativity because I know that all that does is bring me and the people around me down. I am trying so hard to fight it but right now the fibromyalgia is winning. I know it won't last forever. It comes and goes. The weather sucks! It's cold! We're supposed to be getting some kind of wintry mix tonight! UGH!!!!

I changed my blog so as not to concentrate on the fibromyalgia and try to make it a more positive escape. Today is not positive. That doesn't mean tomorrow will not be. I am still human and I will have my bad days. Yes I feel like complaining about it today because I am so frustrated.

The thing with FM is for instance, right now out of nowhere I get this sharp pain in my left knee that feelis like someone is stabbing it with a knife & twisting it around. It kind of just moves from one part of my body to the next.

I like to offer solutions and help and once again, positivity, but today is about me & my pain and I am going to whine about it! Althought I really don't think I can type much longer as I lay here on the sofa, miserably uncomfortable.

I think my rant is over. I know there is really no real content or valuable information in what I am typing but just knowing that I cannot always be perfect and happy and perky and yes, positive just makes me normal like everyone else.
I suffer for a reason. I sometimes pray that as I suffer in pain that I can take the pain of others away-if that makes any sense. It does to me. Even though I think like that I still am going to complain and say once in a while "It sucks to be me" even if it's just for a moment or an hour or a day, week, month or year. There are other people worse off than me and I should feel blessed and I do! Life really is great!

Feeling better now! :-)

Pain & The Holidays

2010-12-09T17:01:00.004-05:00

Wow- It sure has been a while since I posted so here I am! Yay! Only thing is I am actually sharing something written by someone else. So much for my creativity :) I read this & wanted to share with my friends who suffer from chronic pain.
The following was written by Paul Gileno from the INvisible Project. In this he also quotes from Michele Gargan, Psyd.
Yep it's a long one. Hopefully I will be back on real soon with some good stuff for ya!

Here is Paul's message:

I think during the holiday time people who have pain and or illness actually have a very hard time. I feel this way for many reasons. One reason is I notice it in myself, I am in more pain, I get frustrated and I get depressed quicker. Holiday times become very busy and in turn we try and do more to stay "normal" at least I do: maybe bake some cookies, or travel to someones house, or spend more time on your feet, get less rest, we spend time worrying about others, and we put pressure on ourselves. Living in pain can be draining as it is and then you add some of these to our days and it is a recipe for disaster. The pain is ignored because we are with family or friends for that momemt and we don't want to loose that moment of joy, because that moment of joy is so powerful and uplifting yet at the same time when those moments are over we have higher pain and all the baggage pain brings. Truthfully we need to balance all of this but not only during the holidays but always. We can have those moments of joy all the time, the problem is for me still to this day is I find myself doing all or nothing. When I feel good, I do to much and when I feel bad I do nothing. It is true I preach to everyone to find a balance each day, I have posted and printed articles written by Doctors on how to find that balance. In all honesty I have tried and found some balance but not enough and during the holidays it seems to just disappear. I want everyone to know your not alone in this and do not be hard on yourself. We are all in this together and we understand all of this and together we can help one another through all of this. BELOW IS THE ARTICLE FROM DR. GARGAN. Hoping you have a low pain and high spirits holiday season. - Paul

Pain and Activity: Use It or Lose It

The human body is meant to move. Yet a person who experiences intense, persistent pain will probably move less and less over time. He or she is also likely to develop a number of “pain behaviors” such lying down for long periods, using unusual postures to brace against the pain, or favoring one side of the body over another when moving. After a while, these pain behaviors take on a life of their own and actually add to the pain.

Long periods of immobility disrupt the body’s pain sensing mechanisms because pain perception relies on feedback from normal muscle activity, particularly the larger muscle groups of the body. Avoidance of activity under stimulates the large sensory nerves and results in more pain when movement is resumed. The habitual use of unusual postures results in secondary pain in other areas of the body as certain muscle groups go into chronic spasm while other muscle groups atrophy from lack of use. So, rather than decreasing pain by avoiding certain patterns of movement, a person is actually increasing his or her pain as well as creating new pain.

A common pattern that I see in my pain patients is a burst of activity on a good day followed by several days of increased pain and immobility. As much as I preach consistently moderate activity, my patients habitually try to get everything done when they feel good. But when they do this, they get nothing at all done in the following two or three days. A prudent and effective pattern to follow is to do the approximately the same amount of physical activity each day. On “bad” pain days, you will have to push yourself, while on “good” days you will have to hold yourself back. If you do this, you will see that you get the same amount done as when you do a burst on Monday and nothing on Tuesday and Wednesday. If you do a little each day, you will get the same amount done without misery on Tuesday and Wednesday.

The following are some suggested techniques you can use to maximize your functioning:

Keep an activity log for a two-week period. Write down everything you do including quantity (how many dishes you washed) and how long you spent at it. You will probably be surprised at how much you do accomplish even though it feels to you as if you are doing little or nothing. Keeping this type of log will make you more aware of your patterns as well as help you set reasonable expectations. Challenge the artificial deadlines you set for yourself. What does it matter if the whole task is completed in one hour or one day, or in three hours or three days? How perfect does the work have to be? Learn to say, “That’s good enough.”
Breathe while you move. Be aware of using your breath to support physical exertion instead of holding your breath against pain. Also be aware of the amount of energy you are using to accomplish a task as well as the quality of your movement. Replace short, quick, intense movements with longer, slower, lighter movements. Elongate the muscles when dusting, scouring, or reaching, and slow down to allow a full range of motion.
Take frequent breaks. Every twenty minutes or so, change positions, change activity, or just rest. It may take you longer to do what you used to do in the blink of an eye. So what? It is important to learn to pace yourself.
Schedule a rest period in the middle of the morning and the middle of the afternoon. A half-hour is usually effective, but some people take an hour or longer. If you have to nap, go ahead. But many people find that just relaxing, listening to music, taking a bath, daydreaming, or meditating is effective in extending their ability to function throughout the day. Go back to your activity log and find the natural breaks where you can insert rest periods. If you think there is no time to rest, you are trying to accomplish too much.
Make conscious transitions between tasks. For example, if you are cooking dinner, take a few seconds to breathe and stretch between peeling the potatoes and molding the meat loaf. This allows you to release muscle tension and adjust your posture as well as tune into your physical effort in order to maintain a steady, easy pace.
Put some type of regular physical exercise into your life. Don’t deprive your whole body of exercise and fitness because part of you is in pain. Yoga is excellent for persons with pain because it increases flexibility and strength while focusing on breathing to support movement. Most yoga instructors will modify the poses to fit your needs. Walking and swimming are also good activities to keep the whole body healthy.
Explore new recreational activities. If you used to play soccer or go skydiving for fun, you have to find new pursuits. Music, painting, gardening, creative writing, and handicrafts do not offer the same physical thrills, but they are relaxing and rewarding. Make time for fun even if you have not completed all the chores that need to be done.
If you have a chronic pain condition, you have to accept that much of your life has changed permanently. This does not mean your life is over. It just means that you can’t do things the way you used to before the pain set in. If you set realistic goals, learn to pace yourself, maintain a moderate level of daily activity, and engage in pleasurable pursuits, you will be able to have a full life.

Michele Gargan, Psyd

About Prayer

2010-04-25T16:42:00.004-04:00

Those of you that know me well know that I am not a religious person in the regular sense of the word. I consider myself more of a spiritual person with a universal love for all and the religions that they follow. I usually do not talk religion or politics, but I've been finding a lot of articles and such lately on Prayer. Whether you believe in God or a higher power or nothing at all, I do believe we all have to have faith in something to keep us going and it does not have to revolve around religion, although this is where is customarily comes into play.
One thing I do believe in is the power of prayer (no matter who you are praying to). There is something about a group of people actually putting their thoughts & good intentions into your well-being that enacts a positive, peaceful energy flow that you can actually feel at times of despair. I know that people pray for me & I pray for a lot of people, hoping that whatever troubles or ails them will somehow be alleviated and they can feel the love & peace that I am sending their way.
My mom has this book, well it's actually in my possession now, called Moments Of Meditation by Paul S. McElroy, copyright 1961. I use this in a lot of my blog entries and when friends need special comfort. The entries in this book are still so relevant in 2010.
Here is an entry called About Prayer, which is really aimed at praying to God, but can easily be interpreted to meet your sense of worship and/or your higher power.

About Prayer

Prayer is not an attempt to get what we want but an endeavor to give God an opportunity to do what he wants through us. Prayer is not begging from God but cooperating with Him. The thing to be sought is not how to get our way, but how to accept the will of God. The intent is not to change God's mind, but to change our attitudes. Prayer is really thinking in God's presence. As the level of our conscience is raised toward the level of God's thoughts, the happenings of life are seen in truer perspective. Effective prayer involves a deep yearning to know God, an eagerness to trust God all the way, an ability to relinquish our hold, and a willingness to let go and let God.

2010-03-14T17:27:00.003-04:00

Here is a "Letter From Fibromyalgia" that was sent to me by a friend. I don't know who wrote this, but it seems pretty accurate. Yes it seems depressing, but at the same time it brings awareness to exactly what fibromyalgia is to those who suffer from it. One thing is for sure- Only someone else with fibromyalgia can really understand what you're going through.

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted. Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia

Practicing gratefulness in all circumstances - - practices for grateful living

2010-03-10T08:10:00.001-05:00

Please click below:

Practicing gratefulness in all circumstances - - practices for grateful living

Take Time Out

2010-02-21T23:52:00.003-05:00

How often we find the days produce too many interruptions, too many unanticipated demands. Extra duties and the trivial all too easily crowd out the more important work that should be done. When we feel crowded and pushed and feel that things are running us instead of our running them, that is the time to slow down. That is a warning to stop, to take time to get away from it all and be alone. When we are overworked and tense, we become inefficient and we overtax our strength. At such times much more will actually be accomplished through rest, difficult and impractical as that may seem, than through overwork and overdoing. Nature demands that we now and then take time out to let our souls catch up with our bodies.

--Paul S. McElroy (Moments of Meditation 1961)

Peace & Happiness

2010-02-18T22:38:00.001-05:00

BE YOURSELF ... DARE TO DREAM... REMEMBER TO LAUGH - We've all received advice over the years from family, friends, co-workers - even from hairdressers and bartenders. Sometimes we nod our heads in casual agreement, but pay no more attention to the advice than we would to emptying the trash. At other times, good advice arrives just when we need it the most, Our best friends tells us to go on that job interview, and we get the job offer and the happiness and fulfillment we're looking for.
Sometimes, like a thief, happiness sneaks up on us when we least we least expect it - and we are forever changed. We become open to new experiences; we feel that single ray of sunshine on a cold, wintry day; we feel blessed to be alive. At other times, happiness can be not only hard to obtain but also hard to recognize. The search for happiness can be a lifelong process of discovery and trial and error. I hope that I, as a person, can help you discover what you can do to enjoy the peace & satisfaction of a happy life. My goal is to bring peace & happiness to all.
I am always here for you ♥

Penguin- Inspired Advice

2010-02-02T16:32:00.003-05:00

Life Is Not Black And White

There are two kinds of penguins: the white ones coming toward you and the black ones going away from you. That probably qualifies as the oldest joke in the Antarctic. It’s not true, of course. There are actually seventeen kinds of penguins, and most have at least a little bit of color. It’s tempting sometimes to see the world in black and white and to take unwavering positions about right and wrong. But things are seldom that simple, and it’s life’s full spectrum – of colors, emotions, philosophies, and ideas – that make it so worth living.

From: Flipping Brilliant-A Penguin’s Guide To A Happy Life

A Toke a Day Keeps the Doctor Away

2010-02-02T09:58:00.005-05:00

A Toke a Day Keeps the Doctor Away
posted by Ann Pietrangelo on Care2

Alone in her Birmingham, England home, a woman stirs a half teaspoon of cannabis into her hot tea. By seeking relief from pain and spasms caused by multiple sclerosis in this way she is, in the eyes of the law, a criminal.

She doesn’t take this action lightly and is not out for a recreational high. She simply wants a reprieve from the relentless pain that plagues her and, after sipping her tea, generally experiences about three hours of relief. Only those who live in chronic pain can fully understand her anguish.

Speaking of her predicament she says, “I want politicians to be nice to me… I’m sick.” One cannot put it more simply than that. (You can read the rest of her story and view the heartbreaking video on BBC News.)

Medical marijuana enjoys legal status in many parts of the world, where it is recognized as an effective treatment for chronic pain or nausea caused by conditions like multiple sclerosis, glaucoma, HIV/AIDS, arthritis, and cancer. Canada, Chile, and the Netherlands have decriminalized or legalized it, and Australia and Belgium are conducting trials on its benefits.

Patients report that use of medical marijuana provides relief from spasticity, nerve pain, tremors, sleeping disorders, nausea, and depression, greatly improving quality of life.

In the United States and some other countries, social stigma and stereotypes twist the issue into a moral argument rather than a purely medical one.

Ironically, if you watch television for a few hours, you’ll be bombarded with ads for powerful prescription medications with lengthy lists of potential side-effects up to and including death, but they are perfectly legal… and encouraged.

They side-effects associated with cannabis are mild in comparison. Long-term smoking of marijuana has some of the same negative effects as smoking tobacco (a legal substance) and is associated with some short-term cognitive problems. For those living life in chronic pain, it is a fair trade for improved quality of life. It is a very personal decision, one that should not be criminal.

In the U.S., 14 states allow some use of medical marijuana with a doctor’s approval (Alaska, California, Colorado, Hawaii, Maine, Michigan, Montana, Nevada, New Jersey, New Mexico, Oregon, Rhode Island, Vermont, Washington), and legislation was recently introduced in Maryland.

The U.S. Drug Enforcement Administration insists that legal medical marijuana already exists: “A pharmaceutical product, Marinol, is widely available through prescription. It comes in the form of a pill and is also being studied by researchers for suitability via other delivery methods, such as an inhaler or patch. The active ingredient of Marinol is synthetic THC, which has been found to relieve the nausea and vomiting associated with chemotherapy for cancer patients and to assist with loss of appetite with AIDS patients.”

According to some patients who have tried Marinol, it is much more expensive than traditional marijuana and does not effectively relieve their symptoms. “If I smoke a joint, the tremors go away most times before the joint is gone,” says one man with multiple sclerosis. “It makes my life a little easier.” Marinol, by contrast, “didn’t really do much of anything for me,” he said.

It is time for the United States let go of antiquated notions of marijuana and recognize its legitimate medical use. Stop penalizing the ill… please sign the petition asking the U.S. Congress to recognize the benefits of medicinal cannabis.

Strong Enough

2010-01-21T22:47:00.005-05:00

From the days of the bronze ages when primitive men first discovered that if copper and tin were mixed a stronger metal resulted, to the days of the steel age when men discovered that if carbon were mixed with iron a still stronger metal resulted, the history of progress has been one of trial and error. In order to stand the added strain and stress that is being put upon us in these days, we need a tougher metal in our souls. The only alloy that can successfully strengthen and fuse with our impure hearts is love. Love is a concern for others that knows no limitations. Love is the ultimate in altruism. Such love can endure all things. When our souls are fused with such love, then the metal of our souls will be strong enough for anything.

- Moments of Meditation by Paul S. McElroy 1961

Brrrrrrrr!

2010-01-06T09:05:00.009-05:00

I Love Penguins!!! I have a huge collection & feel like somewhat of an expert. Heck I even have a penguin tattoo, and some of my art features penguins as well. They certainly are amazing creatures. I would love to see them in their natural habitat one day, which I really don't see ever happening-It's so cold down there. Well, lately we have a had some freak arctic blast here which makes me feel like my penguin friends. I know, it's really not THAT cold here, but still. Still Freezing!!!

Nothing new & exciting here on my end, and lately my mind has been drawing blanks on creative ideas.
I do want to share a video though, made by my beautiful step-daughter, Jennifer, which highlights her family in 2009. Having no biological children of my own, Jennifer is the most wonderful daughter one can imagine. I feel so blessed to have her & her family as part of my life. She & her husband Tommy have also given me the greatest gift of a granddaughter-Payton. This is a beautiful video.

Happy New Year

2009-12-29T08:22:00.004-05:00

I really do hope that everyone had a blessed 2009 and I wish only the best for everyone in 2010.
This past year has had it's ups & downs for me, but I'm still here.
I have grown in so many ways and have finally accepted that I am a new person physically due to my fibromyalgia, so I've kind of been able to get a "new beginning" as the "new" Sara. I'm still the same on the inside, and if you look at me, I still look the same on the outside. I am the only one who really knows my physical capabilities although you still may not notice.
I am so grateful for my family & friends, both old & new, and look forward to the new friendships to come.
I wish you all health, happiness, peace, love, joy, financial stability, tolerance, laughter, I could go on & on....
Big HUGS to all of you ♥

Fibromyalgia Awareness 5

2009-12-15T11:03:00.001-05:00

Here is a video made by one of my fibro friends, Catherine

A fibromyalgia awareness living in fibrohell

2009-11-20T10:07:00.001-05:00

Infection as One Possible Cause of Fibromyalgia

2009-11-10T10:52:00.003-05:00

Infection as One Possible Cause of Fibromyalgia

by Dr. Mark J Pellegrino, MD
October 4, 2009

Excerpted from Chapter 10 of Dr. Pellegrino’s very popular book, Fibromyalgia: Up Close and Personal.* Dr. Pellegrino has seen more than 20,000 FM patients in his practice at the Ohio Rehab Center, and has been a fibromyalgia patient himself since childhood. Though Dr. Pellegrino published these observations before discovery of the XMRV virus, the questions they raise are if anything more relevant today.

All of us involved with Fibromyalgia, either by treating it or having it, have come to appreciate how complicated this condition is.

Fibromyalgia has different types and subsets.(1) More than one factor may be involved in causing it. Causes may be recognized, but the exact mechanism of how Fibromyalgia develops from this cause is not fully known. Most importantly, there is more than one way to get Fibromyalgia; it is an “end point” condition with multiple ways leading to it.

I have compiled a list of probable causes of fibromyalgia. This list is based on my experiences and understanding of the current literature. My opinions on these probable causes may not be shared by everyone. My list of probable causes is as follows:

1. Genetics,
2. Trauma(2),
3. Connective tissue disease,
4. Infection,
5. Catastrophic stress,
6. Chemical exposure.

Like trauma, infection is one of those causes of fibromyalgia that just screams for common sense.

I’ve seen hundreds and hundreds of people whose basic story goes like this: “I was fine, I got a virus, I developed fatigue and pain, and I’ve never been the same since.”

The logical thinking in this scenario is that fibromyalgia was not present before the viral infection. There may have been a hereditary predisposition or a vulnerability, but fibromyalgia was not present. The virus caused the condition to develop and it has been present since the virus and continues to be present. This is a straightforward infectious cause.

Not all infections are as straightforward.

Many people who have fibromyalgia get a viral infection and find it worsens the fibromyalgia. People with active viral infections are at risk for additional infections, particularly bacterial infections which can create additional problems.

Some people with fibromyalgia are more vulnerable to any type of infection because the fibromyalgia renders them more immunocompromised or more at risk for infection. The physician needs to sort out the various possibilities to determine whether an infection is the cause, a consequence, or an aggravator of the fibromyalgia.

The mechanism by which an infection leads to fibromyalgia is probably related to inflammatory or autoimmune changes caused by the infection that starts the fibromyalgia cascade. The actual clinical infection resolves and is long gone, yet fibromyalgia symptoms continue.

• Sometimes, the infecting virus or bacteria may hang around and create a persistent low grade infection which activates the autoimmune responses, thereby “triggering” the fibromyalgia.

• Many times, though, the infection has long disappeared, but permanent changes occurred in the body, and these changes caused fibromyalgia to develop.

Various viral infections can cause fibromyalgia.

• The Epstein-Barr virus which causes infectious mononucleosis is one.

• Cytomegalovirus causes a syndrome similar to infectious mononucleosis.

• Different strains of the influenza virus can also result in fibromyalglia.

• The adenoviruses, especially Type II, cause common colds, bronchitis, and various upper respiratory infections, and may lead to fibromyalgia.

• Human Herpes Virus 6 has also been implicated.

• Reactive fibromyalgia has been described in patients with AIDS and hepatitis.

Sometimes viral titers can be directly measured to demonstrate that an acute infection has occurred. This concentration can be correlated with the clinical development of fibromyalgia. Many times, though, the exact offending virus is not known, but we can still categorize the fibromyalgia as one that was caused by an infection, probably a viral infection, if it fits clinically.

Bacterial infections can also cause fibromyalgia.

I have seen patients who have developed fibromyalgia after sepsis (blood infection) and salmonella infections, and one who, I felt, has gotten it from a Listeria infection. Some research studies found Mycoplasma incognitos and Chlamydia pneumoniae(3) in patients with fibromyalgia and chronic fatigue syndrome.(4) These infectious organisms may be causing some of the symptoms.

Indeed, some of the patients improve with antibiotic therapy. Gulf War Syndrome, in part, may have been related to infections from one of these bacteria. Symptoms of Gulf War Syndrome include fatigue, headaches, depression, joint and muscle pain, sleep disorders, and poor memory (sound familiar?). [Note: As of November 2008, a research panel reported their finding that Gulf War illness is real, and “is the result of neurotoxic exposures,” as discussed in Chapter 10 under Chemical Exposure as a probable cause of FM.]

Fibromyalgia can be caused by yeast and parasite infections.

I have seen some patients who developed it following a severe Candida yeast infection, and others following parasite infections such as Giardia. Most of the time, yeast or parasite infections occur in patients after the fibromyalgia has already developed. These infections may aggravate the preexisting fibromyalgia or cause it to flare up.

Fibromyalgia may predispose us to these infections by interfering with our immune function. On the other hand, these infections can sometimes cause the fibromyalgia by “triggering” the fibromyalgia cascade. Many of the symptoms of a chronic Candida yeast infection(5) - such as fatigue, irritable bowel syndrome, bloating, allergies, altered immune response, and skin conditions - overlap with fibromyalgia symptoms. This can make it difficult to “separate” the two conditions and determine cause and effect relationships.

As I’ve mentioned, some infections come in, do their damage and disappear. The infectious agent is no longer present in the body and thus can’t be detected at a later point in time. Other infectious agents may hang around in the body and establish a chronic infection; one that perhaps can be detected with blood tests.

What remains to be seen is whether these chronic infections can be eradicated with antibiotic treatment and, if so, will the fibromyalgia symptoms disappear? Or has the fibromyalgia already established itself as a separate entity which does not disappear with the antibiotic treatment?

Hopefully we will have these answers in the near future. [But]… one thing is certain: We will continue to learn more about fibromyalgia and understand it better.
___

1. See also Dr. Pellegrino’s articles on: “The Fibromyalgia Spectrum – Part of the Big Picture in Understanding Fibromyalgia” and “Fibromyalgia – Ultimately a Disease of Amplified Pain.”

2. See also Dr. Pellegrino’s article on: “Fibromyalgia as a Complication of Injuries”

3. For more on this subject, see “Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia – An Opinion,” by Patient Advocate James Kepner, from the Chlamydia pneumoniae Help website.

4. See “Evidence for bacterial (mycoplasma, Chlamydia) and viral (HHV-6) co-infections in chronic fatigue syndrome patients,” by Dr. Garth Nicolson and Dr. Darryl See.

5. See also Dr. Pellegrino's article on: "Candidiasis - Yeast Infection and Nutritional Repair."

* This article is excerpted with kind permission from Dr. Pellegrino’s very popular book Fibromyalgia: Up Close & Personal, © Anadem Publishing, Inc. and Mark Pellegrino, MD, 2005, all rights reserved. This book may be ordered in the ProHealth.com store (see new products).

Note: This information has not been reviewed by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

This is the Face of Fibromyalgia [Awareness Day 2009]

2009-10-26T11:09:00.000-04:00

Lying Down Helps with Fibromyalgia Pain, Fatigue and Anxiety

2009-10-13T08:27:00.004-04:00

Here is an article written by my friend Christine, describing an excerpt from the book The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia, which is an awesome book that has really helped me to learn how to manage my fibromyalgia. Pacing is definitely one of the most important things in changing your lifestyle. This was very hard for me to do at first, but you finally get to a point where you have no choice but to take a break and learn your limitations if you want to be able to function.

Lying Down Helps with Fibromyalgia Pain, Fatigue and Anxiety

Finding the right balance of activity and rest is one of the biggest challenges for people managing Fibromyalgia (FM) and/or Chronic Fatigue Syndrome (CFS). The good news is that you can increase your control over your condition by consistently practicing what is often referred to as “pacing”. This means understanding the limitations imposed by your FM/CFS and learning to adjust your activity levels for increased comfort. By using pacing strategies you can bring greater stability to your life and prevent or greatly reduce flares.

Bruce Campbell, Ph.D., a recovered CFS patient, created and directs a CFIDS and FM Self-Help program. This program can be found at www.cfidsselfhelp.org along with a textbook called, “The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia”. In my opinion, this is the best self-management approach I’ve found to date.

In his chapter on pacing, Dr. Campbell defines rest as “lying down with your eyes closed in a quiet place”. He uses the term “pre-emptive rest” which means resting daily according to a planned schedule that works best for each individual with FM/CFS.

One of the best ways to manage FM/CFS successfully with pacing is to alternate activity with rest breaks. Lying down is the most restorative way to take a rest break for people with FM/CFS. When taking a rest break, lie down on a bed, the floor, a couch, a recliner or similar place that allows you to be as comfortable as possible.

Lying down for a rest break should be tailored to what works best for you. It should be a time of complete stillness and quiet with no distractions or activity (i.e., no reading, watching TV, talking to someone, etc.). Your eyes are closed and you are “letting go” of the activities you need to do until you have completed your rest break.

This is your time to just “be”. You might take a nap, listen to soothing music, meditate or listen to a guided relaxation, or just lie still and gently allow your thoughts to “settle down”. The length of your break depends on your individual needs and other activities you have planned. Experiment to see what works best and is most restorative—each day will be a bit different.

For myself, I find lying on the floor (I have a rug covered by a soft blanket) and relaxing for 15 to 30 minutes a few times a day helps me prevent fatigue, pain and anxiety. My breaks always make me feel more calm and tranquil. I enjoy very gentle yoga and stretching before and after my break and find meditation to be the best way for me to restore my energy.

Alternating your daily activities with rest breaks can help you pace your life and avoid crashes and flares. I invite you to send me your suggestions and successes with “lying down” rest breaks and how they help you reduce your FM/CFS symptoms.

Understanding Fibro Fog

2009-09-23T09:04:00.003-04:00

A Little Something to Help You Get Started Thinking About
Fibro Fog:
(Kitchener-Waterloo Fibromyalgia Newsletter)

You know you have fibrofog when......

You boil the kettle dry three times to get one cup of tea.

You read a note you wrote to yourself to pay a bill, and you wonder who the heck is Bill.

You call the school twice, to let them know your child is at home sick.

You can't disconnect the dishwasher from the kitchen tap, because you didn't turn the water off first to release the pressure.

Many people with Fibromyalgia like to make jokes about Fibro Fog because it's often embarrassing and even frightening. A common scenario: You're having a conversation with someone when suddenly, in the middle of the sentence that's coming out of your mouth, your brain seems to turn itself off. Your mouth hangs open as you desperately search for what you were just saying two seconds ago. But it's no use. Where there once was a clear distinguishable thought in your head, there is nothing left but a vacuous black hole of nothingness. This kind of short-term memory loss is experienced by every Fibromyalgic.

"The wheel is turning, but the hamster left town," as Devin Starlanyl and Mary Ellen Copeland put it in their book, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual, which devotes an entire chapter to Fibro Fog and other cognitive deficits. "You may spend hours every day trying to find various items, like your keys. (After a while, you may feel as though your mind is one of those misplaced items.) You may not recognize things when they are right in front of you but are not in their accustomed place, or when it's in a different package or form."

Research at the University of Michigan has validated the reality of fibro fog. The researchers observed a similarity between neuroendocrine dysfunction in patients with FM and older but otherwise healthy people. They compared three groups of people: First, a group of people with FM. Second, a control group of healthy people who were similar to those with FM in age and educational background. And third, a group of healthy people with similar educational backgrounds as the others, but who were 20 years older than the other two groups. Because cognitive function begins to decrease, even in healthy people, as soon as adulthood is reached, the three groups were given various age-sensitive neuropsychological testing to see the extent to which Fibromyalgia affected cognitive dysfunction as compared to the normal cognitive loss caused by aging.

The researchers found that people with Fibromyalgia do not have the same mental agility as healthy people of the same age. Their verbal fluency, long-term memory, and working memory (how much information you can use, manipulate and store at one time) was at the same level of capability as those in the older group. The people with Fibromyalgia performed even worse, scoring lower than the older group and showing a serious deficit when it came to vocabulary, a cognitive function that doesn't normally decline with age.

The findings of this research is important in two ways: First, it validates cognitive deficits in people with Fibromyalgia. Second, whatever is going on to cause the cognitive deficits in people with FM, it is not the same as that which occurs with natural aging. (See: Starlanyl & Copeland, 17:203)

Another study done in 1999 by Glass, Park and Crofford researched metamemory, which is our ability to accurately assess our own memory skills. The three researchers used a control group and a third older group of people, just as in the reported study above. Not only were the three scientists after how well Fibromyalgics could assess their own memory skills, they also wanted to rule out depression and poor motivation as possible causes of cognitive dysfunction. The FM patients were asked how well they felt they could perform simple tasks, such as dialing a telephone and shopping for a few items without a list. The Fibro patients reported lower memory capacity, less control over their memory function, more cognitive deficits, and greater memory deterioration than the older group. The study found that the people with Fibromyalgia were entirely accurate in their assessments. In fact, the Fibro patients used more memory improvement strategies, like lists and calendars, and were more highly motivated as to the importance of keeping a good memory, and although they had more anxiety about memory function than the other two groups, their cognitive dysfunction was not a result of depression.

"These patients were trying to make the most of what they have in every way they knew how. They reported a greater perception of loss than the older control group did, even though their memory loss was similar," says Starlanyl and Copeland, who also report that the study found "this as an accurate perception, since the cognitive function of the FM patients is not age-appropriate." (See: 17:203).

And let's not forget that on top of this general deficit of cognitive function every Fibromyalgic has, there are also those "attacks" of Fibro Fog. Not only can Fibro Fog vary in severity among people with Fibromyalgia but it also can vary in intensity with each individual from hour-to-hour, day-to-day, month-to-month etc. There's no telling when a particular nasty "attack" of Fibro Fog will hit on top of the every day cognitive problems of someone with FM.

This particularly nasty symptom of Fibromyalgia can range from forgetfulness and being muddled headed, like finding your wallet in the refrigerator, to a state that is quite severe. For instance, someone with an extreme case of Fibro Fog might be returning home from the grocery store they've been going to for the last 10 years. They'll be traveling the same route home they take every single time they go to their grocery store. Suddenly, nothing seems familiar. They don't recognize landmarks and everything looks different. They very easily become lost, traveling round in circles or worse, "coming to" in another town or city entirely.

There are a few theories as to why FM sufferers experience Fibro Fog. John Lowe believes the Fibromyalgic's brain receives an insufficient delivery of oxygen, glucose, and other substances the brain needs to function properly. Inadequate thyroid hormone regulation may be causing the metabolic rate and the flow of blood to the brain cells to be defective as well. (See: Wrutniak-Cabello, C., F. Casas, and G. Cabello. 2001. Thyroid hormone action in mitochondreia. J Mol Endocrinol 26(1): 67-77.)

Research conducted with Single Photon Emission Tomography scans show that people with FM have decreased blood flow in the right caudate nucleus of the brain and also in the left and right thalami. It's speculated that the decreased blood flow could be caused by a neurotransmitter dysfunction or by a problem in the glial cells. Glial cells are crucial to our brains because they're active in brain cell permeability, meaning they allow much needed substances to pass into the brain's cells, such as electrical ions. Without this permeability, brain function deteriorates.

There's also a bioelectric connection between glial cells, ion exchange, and cellular swelling in the brain. Because the glial cells have such an increased permeability in the brain of a Fibromyalgic, far too much fluid is allowed into the brain cells. These swollen cells not only account for migraines (where the menningeal blood vessels become hyperpermeable), a common accompanying illness many Fibromyalgics suffer, but also for a generalized increased pressure, which in turn affects cognitive processes. Therefore, these defective cognitive processes, or Fibro Fog, may be due to this flooding of the brain cells and could account for reports from those suffering with FM that their brains feel swollen. In fact, Starlanyl and Copeland say perhaps the brain is really physically swollen. (See: 17:201) But how does Fibro Fog physically feel to a Fibromyalgic that is suffering from it? The sensation, many patients report, feels like the brain has become very heavy and big and slow in a suddenly too small skull.

With migraines, this sensation of heaviness and largeness can grow and grow, until the brain feels like it is trying to push against the inside of the skull and any minute the head will explode. The pressure inside the skull is enormous and in many will cause actual swelling of facial features, protruding eyes and swollen gums. Obviously this is all excruciatingly painful. In fact, it is not all that uncommon for someone with a migraine to have the urge to or actually physically hit their head against a wall repeatedly in a useless attempt to rid their heads of the pressure from the swollen brain cells. Motor actions degenerate and to move their head even slightly brings monumental amounts of pain cracking through their brain and skull. The swollen, pressured brain cells can also cause sensory malfunctions like double vision, extreme sensitivity to light and sound, halo-like rings around light sources, patches of white or black in the vision field and much more.

Starlanyl and Copeland also report that a Fibromyalgic's chronic pain itself could be affecting their cognitive abilities: "In one study, researchers found that some chronic pain patients performed some tests more poorly than patients with head injuries. This study suggests that pain can disrupt cognitive performances that depend on intact speed and storage capacity for information processing. Processing pain occupies most or all of our thought processing networks, thereby interfering with concurrent cognitive tasks such as thinking, reasoning, and remembering." (See: 17:201)

In other words, if someone with FM suffers an increase in their pain levels, like they commonly do in the morning, tasks like picking out what clothes to wear can become mind boggling and an insurmountable job.

Some people can spend days at a time in a Fibro Fog with their cognitive deficits worsening: Unable to speak correctly. Unable to read or to write a sentence a child could do. Unable to remember familiar things like the names of relatives or how to spell "cat". Unable to turn on the stove not only because they forget the mechanics, but also out of the fear they'll forget they're cooking something and start a fire. Unable to remember things, looking everywhere for their cars keys until they're exhausted and can't go out to do their errands and then finding the keys by accident in the freezer with the ice cream they bought two days ago. Unable to take the same amount of sensory input someone who doesn't suffer from Fibromyalgia can, such as exposure to large crowds, or a lot of noise, or the multitudes of visual and physical actions of driving for hours on end, especially at night when light sensitivity makes it an even more difficult task. Unable to concentrate or socially interact because their intense amounts of pain are interfering with their cognitive skills to the point of distraction. Unable to do all of these things just listed and so much more because their minds function at a cognitive level worse than someone far older than them. And take note that all these many negative and life restricting things listed and described as belonging to someone suffering with Fibromyalgia only focuses on what Fibro Fog does to them. All the other symptoms and difficulties, which descend on someone with Fibromyalgia, like extreme pain and chronic fatigue to name only two of the dozens a Fibromyalgic can suffer from, were not even taken into consideration when describing how a Fibromyalgic lives a limited, constricted and socially isolating life.

4 Treatments for Fibromyalgia By Mehmet Oz, MD

2009-09-21T13:38:00.008-04:00

I was just going to provide a link for this article, but decided to copy from O, The Oprah Magazine Website for easier reading. You can also click on the title above and it will take you to the original article on the website.

4 Treatments for Fibromyalgia

By Mehmet Oz, MD

Photo: Ben Goldstein/Studio D

Dr. Oz will see you now! In his first O column, he analyzes the different treatments for fibromyalgia.

Defining Fibromyalgia: Though classified as a disorder of the musculoskeletal system, the condition is now seen as a central nervous system problem. Symptoms include increased sensitivity to pain, achy and stiff joints, fatigue, and specific tender points on the back, chest, arms, and legs. Migraines, sleep disorders, and irritable bowel syndrome are also common complaints. Up to 3 percent of the population may suffer from fibromyalgia, but with no clear cause, the condition is difficult to diagnose.

Western Medicine Approach: A formal diagnosis for fibromyalgia didn't exist until 1990, but now there are three FDA-approved meds to combat the pain. Still, says Nancy Klimas, MD, director of the Allergy and Immunology Clinic at the University of Miami, "there is much more to treatment than a pill." Strategies are needed to improve sleep, stretch and restore symmetry to muscles that have been shortened by spasm, and raise overall conditioning through exercise.

Energy-Based Approach: Practitioners believe the root of fibromyalgia is a disturbance in nerves that blocks energy. The disturbance, says Devi S. Nambudripad, MD, PhD, and a licensed acupuncturist, is caused by sensitivities to substances ranging from pollen to vaccines to chemical agents in fabrics. Anxiety and depression may also play a part. Practitioners use acupuncture to release energy and allergy testing to identify problem substances.

Psychological Approach: "The pain of fibromyalgia is not caused by depression," says Leonard Jason, PhD, professor of psychology at DePaul University, "but depression can deepen a patient's experience of pain." Mental health professionals may play a complementary role in treatment, but it's a vital one. Cognitive behavioral therapy can relieve depression and help patients identify sources of stress that magnify their symptoms.

Nutrition-Based Approach: Fibromyalgia is a systemwide breakdown, says Jacob Teitelbaum, MD, medical director of the nationwide Fibromyalgia & Fatigue Centers. After suffering from the disease in the 1970s, he developed his own protocol; in studies, patients improved by as much as 91 percent. He recommends supplements to help sufferers sleep, balance hormones, boost immunity, and improve nutrition. He also prescribes regular exercise. (Try Dr. Oz's 20-minute workout plan)

My Recommendation: Because Western medicine was slow to accept fibromyalgia, it is behind in its work; this is an area where patients will want to take a serious look at alternative approaches. Energy-based medicine could offer some important advances in treatment over the next decade, but since it has yet to be tested by independent research, I think it's premature to base your therapy solely on this approach. I'm more impressed by Teitelbaum's supplement regimen, and not only because he has tested his theories: I've put patients on this program with very good results. I would add counseling, as it should always be a part of fibromyalgia treatment. If after a couple of months you don't see improvement, talk to your doctor about drug therapy.

Sick & Tired of Being Sick & Tired

2009-09-18T18:58:00.008-04:00

So here I am having another FM flare-up. Once again the weather is a contributing factor I'm sure.
This past weekend I went to a baby shower for Susanna (Jennifer's Stepdaughter) and had a very nice time. It was great to see everyone, including, Jennifer & Payton. I knew that this would wear on me because of the drive to Gastonia and just the fact of being somewhere for that long a period of time.
This whole week has been torturous for me and yesterday was the worst day of all. I literally could not move and got into one of my "why me" moments which I do experience every once in a while. Yes I try to think positive but sometime the pain does overpower that and you can't think of anything else. I actually cried myself to sleep last night. Yes even positive people have bad days too. I am human but I have decided not to let it stop me or take over my life.
I woke up today feeling pretty much the same. The old me would have stayed in bed all day, believe me I really wanted to do that today, but I had plans. My friends Brenda & Beth took me to lunch for my birthday and we had a great time. After that I even went and got my Pandora Teapot charm that I have been wanting for a long time with some money that my godmother sent me.
I refuse to let this thing win! Today is Payton's 3rd birthday and I can't believe how fast she is growing. We will be going out to Jennifer's tomorrow to celebrate. I will be there- no matter how bad I feel. I have to live my life and enjoy every minute of it. I know there will be times when I will have to cancel on someone, but I am going to try my best to pace myself, listen to my body, do what I can while I can. I do need to rest though, and I plan to do that starting Monday.
Once again- another confusing blog by "me"

What Should an FM or ME/CFS Patient Do About the Swine Flu?

2009-09-16T11:59:00.005-04:00

What Should an FM or ME/CFS Patient Do About the Swine Flu?

by Dr. Charles Lapp, MD*, September 8, 2009

From the August issue of Dr. Lapp’s free e-newsletter (www.drlapp.net/news.htm)

In June 2009 the World Health Organization declared that the spread of a novel H1N1 Swine Flu had reached pandemic levels. At the time of this writing, the swine flu has become widespread in the southern United States, especially the Southeast. However, the illness prevalence, the number of doctor visits, and the morbidity is still no worse than the usual seasonal influenza. It is expected that the number of cases will increase as school resumes because H1N1 is rapidly spread by coughing and sneezing, hand-to-hand, or hand-to-body contact.

Many patients have been alarmed by reports of the seriousness and infectivity of this new flu, and have asked if vaccination is advisable. Our usual recommendations on influenza vaccinations are that:

• That they have been known to trigger flares of CFS/ME/FM,

• That many PWCs to do not respond to vaccination anyway,

• And that viral infections are uncommon in most PWCs due to upregulation of the immune system.

Therefore, we would recommend seasonal flu vaccination only if you have tolerated these well in the past and if you are at high risk.

Because the current swine flu is so novel, a new vaccine needs to be produced. This is not expected to be available until late October.

Unlike seasonal influenza, H1N1 mostly attacks younger age groups, particularly under age 24. Vaccine availability will be limited, so it will be offered to specific target groups first. These include:

• Pregnant women,

• People who live with or care for children younger than 6 months of age,

• Healthcare and emergency medical services personnel,

• Persons between the ages of 6 months and 24 years old,

• And people ages of 25 through 64 years of age who are at higher risk for novel H1N1 because of chronic health disorders or compromised immune systems.

We do NOT consider the immune system in CFS/ME to be compromised to the point of being “high risk” unless there is a history of frequent viral infections and/or pneumonia.

Based on information available at this time, H1N1 immunization may not be available to the majority of our patients until late Fall, perhaps well after the swine flu peak. Therefore, we are recommending that our patients:

• Avoid crowds and sick people (especially coughers and sneezers!),

• Wash your hands frequently or use alcohol-based hand cleansers,

• Avoid touching your eyes, nose, or mouth with your bare hands.

The symptoms of novel H1N1 flu virus in people include fever, cough, sore throat, and runny nose, body aches, headache, chills and fatigue, possibly diarrhea and vomiting. If you suspect that you have contracted swine flu:

• Immediately contact your primary care office or Hunter-Hopkins for advice and possibly medication

• Avoid contact with others for at least 24 hours after the fever subsides

• Consider wearing a surgical face mask if others are around you

• Recognize these warnings signs and seek medical assistance immediately for difficulty breathing or shortness of breath, pain or pressure in the chest or abdomen, sudden dizziness, increased confusion, severe or persistent vomiting, and flu-like symptoms that improve but then return with fever and worse cough.

In lieu of swine flu vaccination two antiviral medications can be taken to reduce the symptoms and severity of the illness.

These must be started within 48 hours of illness onset, and are not recommended for prevention of the flu. The adult doses of these medications are:

• Tamiflu / oseltamivir (75 mg tablets taken twice daily for 5 days) or

• Relenza / zanamivir (two inhalations twice daily).

For more information go to the Center for Disease Control website at www.cdc.gov/h1n1flu/

* Dr. Charles Lapp, MD
Hunter Hopkins Medical Center
Charlotte, North Carolina
drlapp@drlapp.net
10344 Park Road, Suite 300 - until October, then:
721 Carmel Executive Park Drive, Suite 320
Charlotte, North Carolina 28226
____
Note: This information has not been evaluated by the FDA. It is general and should not replace the attention and advice of your personal physician. Nor is it meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

Escape

2009-09-11T09:37:00.004-04:00

I know I am not the only one who has ever just wanted to "get away." I'm pretty sure everyone has experienced this.
I tend to get overwhelmed at times and want to escape, just for a while. Not really a Calgon type of thing, but to just go somewhere by myself, away from everyone, with no contact, just my myself. I have been feeling like that for the last few days. No specific reason, but it is definitely not the first time.
In the past, whenever I would get like this, I would just tell everyone, that I wanted to be alone and not to worry and I would book myself a room in the finest hotels in Charlotte (Yes- I did this more than once) and just basically chill. Nothing special about the room. Maybe the fact that it was different or that I could enjoy room service, or that I didn't have to think about anything at all, at least not until check out time.
Some may say, referencing my previous post, that I did not want to face reality. That's fair to say, but like I said before I am realistic and I am not trying to avoid responsibility-- I just needed some "me" time. Yes it is an escape, but it was also a way to renew myself, and take that much needed break that I deserved. I never abandoned any responsibilities when I did this, I did however feel refreshed the next day.
Is this selfish? I don't think so, for I believe that we need to take care of ourselves before we can take care of anyone else. I have always been there for everyone and I love it, but sometimes I need a break.
I would love to do this now but of course it is financially impossible and I do realize that it is a waste of money when there are so many other ways to escape. Maybe not for 24 hours, but I have found such comfort in the beauty of nature.
My perfect escape would be to sit on a deserted beach, under a palm tree with a good book, but I don't really need to go that far. Every time I look through our big windows out at our backyard and see the beauty of the trees, and enjoy the company of the birds (& squirrels too), I couldn't ask for more. We had our backyard declared an National Wildlife Habitat because we enjoy taking care of our little friends and provide them with food & water & shelter, so believe me, our visitors are plentiful.
I know....Going off course again....
Some of my other escapes are photography & gardening-Very therapeutic for me.
There are so many ways to escape, even if its just for a while. Everyone has different methods & activities that help them. For me, being one with nature is what truly brings me peace.

Life is Great!

2009-08-26T09:52:00.009-04:00

Life is great! I refuse to think otherwise. I know there are so many things going on in this world that are bringing people down. I will not be one of them. My husband doesn't think I "get It" and that I need to face reality. Oh I do "get it" and I am certainly very realistic, but just because I choose to think positive and imagine that everything is going to be ok does not mean that I don't see what is going on, and I am not going to let it eat away at me and just assume the worst.
My whole life I have felt financially secure, but right now is the first time in my life where I don't feel as secure. I don't work, John has had to take a huge cut in pay, John's hospital bills (after insurance payments) have finally arrived, and I know that he is freaking out about it. Also the fact that he doesn't even know if his job is secure (his thinking) and what can happen in the future. It's scary and I do "get it."
Here's my thing, instead of thinking the worst, I imagine the best. I know we need to be realistic, but they don't see what I see. I see a great future. I see options. I KNOW everything is going to be ok- call me crazy-I'm not though. How do I know everything is going to be ok? I just do. I've always known certain things. Some of you know that about me, some of you are once again thinking I am crazy.
The bottom line is that you choose how you want to live your life and if you imagine the best, well then how can anything but that positive energy focus on what you want in life. You could also call this the "Law of Attraction" something I truly believe in, for I have been blessed with everything that I ever wanted.
I know I am a terrible blogger because I start with one thing and totally get side tracked and ramble on about something else and my blogs never seem to make sense. Well they do to me, I guess ;-)
It's ok to be realistic and have options available and be prepared, but don't anticipate what hasn't happened yet and imagine the worst, that's just going to surround you with that negative energy and probably give you an ulcer.
Live life to the fullest, enjoy every moment of everyday, savor it as if it were your last, take one day at a time.
Maybe I am living in a fantasy world, but I'm happy, and life is good here. You are always welcome to join me. My door is always unlocked- you just have to turn the knob and open it. You will truly be amazed.

A Point of View

2009-08-12T22:34:00.005-04:00

Three stone masons were at work when a passer-by stopped and asked each one the simple question: What are you doing?
The first replied: Obviously, I am cutting stone.
The second replied: My good man, I am earning a living.
The third lifted his eyes and said with a smile and with pride: I am building a cathedral.
All three were doing the same kind of work but their reactions were a matter of attitude. To one the task was boring, to another it was just a job, but to the third the task was thrilling. All work can become ennobling to the person who can see in it creative purposes and the importance of his own efforts. (from Moments of Meditation by Paul S. McElroy 1961)

New Attitude

2009-08-08T19:27:00.006-04:00

So I said I might bring fibromyalgia back to the blog once in a while, well here it is. Yes I still have FM, yes I still have pain & fatigue and other symptoms but a lot has changed at the same time.
After not finding a medication that will work for me, just the occasional hydrocodone, which really doesn't relieve the FM pain just the other pains from arthritis, etc., I was partaking in many support groups both online and a local one here in Charlotte. I even started several groups myself, and my blog was solely about FM. I thought this is great to be able to share with other people who actually understand what I am going through and whom I can talk to. I thought this was very therapeutic until I noticed that my symptoms seemed to be getting progressively worse. I just blamed the FM as a progressive disease, which the doctors say is not. Well I decided to take a break from all of my FM groups and I stopped going to my local support group and something amazing happened--- I started feeling better! I have always believed that you take in the energy of what surrounds you, and if I am grouped with a bunch of people that are in constant misery, then I am going to feel it too, also being the somewhat empath that I am, I do feel what others feel. Oh I'm not cured, in fact I am in extreme pain right now as I type this, but yet I feel great! I know this can not make sense, but it does to me. I hate the pain, but I accept it and I have to live with it and I'm ok with that.
I haven't given up on my fibro friends who need my support, for them I will always be here, and I will always advocate for fibromyalgia awareness. I still drop in on my online groups about once a month to check in and say hi because I am still one of them-I just choose not to write about it everyday and about how life sucks and how I wish I would die-- No- I don't feel that way. Life is good! I am happy and fortunate to have what I have in this life and path that has been chosen for me.
The mind is amazing- creative visualization works- you have the power to control how you choose to feel.
BTW- I am also seeing a reflexologist who might have something to do with this change too but I think I need to take the credit for my mindset, because only I can control that.
Always smile, think positive, spread that positive energy to those around you- it is amazing what can happen.

Our Big Scare

2009-07-19T12:42:00.004-04:00

Well we had a bit of a scare at our house this past week. Wednesday morning John woke up and started having some chest pains that went all the way up his neck into his jaw and to his head. Th episode only last about 3-4 minutes and then he felt fine. I told him we should go to the hospital but he thought it was just anxiety. He ended up having several more of these throughout the day. At around 7pm he had a stronger one and couldn't move so we immediately went to the hospital in Pineville near us where he had another one. They determined, due to abnormal EKG results and a very high enzyme level in his blood, that these were in fact mild heart attacks that he had suffered and that he at least had one artery with more than 80% blockage. He was then transferred to CMC Mercy where they discovered 3 large blockages-2 in the circumflex and one in the right coronary artery (see picture above). They where able to put 3 stents in to repair these. He was very lucky to not have suffered much damage to the heart.
It is so amazing what they can do these days. We were very fortunate to have caught this in time. He is going to have to make a lot of lifestyle changes which he seems to be all for- and I am so thankful for that. He is usually very stubborn about these things but this time he is really taking it seriously and I am supporting him 100%.
He is home now, resting & recovering, and I am thankful for the thoughts and prayers of so many friends that helped us both trough this. The funny thing is my friends kept telling me that I seemed too calm- Well I think that God kept me calm so that I could be strong for John. After I knew everything was going to be ok I did actually lose it completely and bawled for about an hour to release that build up inside of me. It is amazing how someone like me who suffers from panic disorder, can be that strong when I need to be- there is definitely a higher power involved and the power of prayers is definitely effective!!!!

Hectic Week

2009-07-05T21:42:00.006-04:00

So I've had kind of a hectic week. 1st of all I am having a major FM flare and so my pain has been excruciating and I have had the usual fatigue as well. Stress also aggravates this. Amongst other things, one of my good friends from high school, Francis, had colon cancer surgery on Tuesday. They took 9 inches of his intestine. He is just waiting on the biopsy results from the lymph nodes which he should have tomorrow or Tuesday. I am praying really hard that everything comes back clean. He also seems to have found someone that makes him really happy, she also went to our high school and I am so happy for both of them. They really deserve happiness.
Anyway, on Wednesday, on of my BFFs, Rockin' Robin, had surgery on her tibia from a fracture that she got in an accident. They had to put a plate in her leg so that she could walk normal. She has to keep weight off of it for 8 weeks. Bless her heart- She is an awesome person with a huge heart of gold. The surgery turned out well. keeping her in my prayers too.
I have also had several things going on this week- I just feel crazy!!
My lack of motivation has really shown itself this week. I have been sending daily quotes to over 200 people every week-day for I don't know how long and this past week I didn't send them. I am using the excuse that it was a holiday week and nobody needed extra junk in their e-mail. I also haven't prepared the ones for this coming week. I don't know what to do.
I had some mailings to get out from the HOA to all the neighbors regarding speed limits, which I did manage to do. I am also supposed to be working on the neighborhood website but I haven't had a chance (or motivation) to do that either. I really need to get on the ball. Maybe if I organized my office some then maybe it would make it easier for me to work. I will try to work on that tomorrow- not procrastinating- it IS 10 pm ;-)
So many people have died this week, both famous and personal acquaintances which is really sad for me.
John took the week off to relax- I hope he was able to get some relaxation before returning to work tomorrow.
This is a boring entry I know, but oh well, I guess it is more for my benefit.
I hope my pain starts to diminish soon so that I can feel active again. Still sucks to be me but that is who I am and I accept it.

Ramblings

2009-06-22T15:19:00.006-04:00

So- I just had a club sandwich for lunch- woohoo-thrilling right? I don't know, I am in a rambling mood, which means I should probably get a pen and paper out, for the ideas are somewhat flowing.
So I took my acoustic out last night and boom-string popped-stupid me cannot find any strings in the house. Who doesn't have back-up strings? I do somewhere, but where? I have been in this HAIR (the Musical) playing mood. Used to play and sing it all the time, long, long ago. My mom had the album and she saw it on Broadway with the originals- James Rado & Gerome Ragni. Why HAIR? I have no clue! My mom has really influenced me musically in a lot of ways and I believe that is why I have such musical diversity in my tastes. I have also developed artistic diversity from her as well. Although we have different tastes, mine have changed over the years, when I would go through different phases, but I always come back to my favorites: Kandinsky, Klee, Miro, etc. Do we see a pattern here? Does this mean my mind is hectic? messy? out of order? I don't think so. Or does this explain my panic disorder? Who the hell knows. Psychology is such a fascinating subject- I love to analyze things-maybe too much. Hmmmmm.
So as I said- my rambling mood has caused me to ramble to create a mess of a blog in one paragraph--see? maybe the artists do say something about me. Today's blog makes absolutely no sense.

I Am Drawing a Blank

2009-06-14T16:42:00.004-04:00

Ever since I changed my blog, My mind has not been able to come up with anything to blog about. Nothing really new happening in my life and it's been too hot and humid to work out in the yard.
I have been going through some old pictures which bring back a lot of memories, and my poor facebook friends are being tagged without warning.
On another note, as you may know, my mom is a very talented musician. She can play any instrument by ear, which I guess is where I get it from, because I don't read music either. I taught myself guitar chords and went from there. Anyway, getting back to the story, my mom wrote a lot of songs, mainly Boleros when she was young. She has old recordings of them, but now her friends are actually performing them.
A couple of years ago, my mom asked if I wanted to perform one of her songs at an event, which I did want to but declined because it had been so long since I had performed in front of a crowd that it gave me a panic attack just thinking about it.
Anyway, I have finally decided to record her songs at our friend's recording studio, something that means a lot to me and to my mom. My mom told me last night that our friend can get the whole band together but not for a few weeks now, which works for me-more time to practice. I would love to do a duet with my mom as we have always done my whole life, harmonizing to each others tunes.
I too have written many songs, but that was a long time ago and I have no desire to record them professionally. I have old recordings too, but I can just re-record here at home-John's got me hooked up.
Look for me on the Billboard charts-NOT :-)
Meanwhile, our friend will be performing this weekend at a gallery opening, of course I have drawn a blank on the name of the gallery(Fibro Fog)

I've changed my blog

2009-06-09T13:02:00.004-04:00

I have decided to change directions with my blog. Instead of concentrating solely on Fibromyalgia which seems to bring me down, to a more up-beat positive place. Don't get me wrong, I may still vent frustrations and complain about FM, but I feel like I need to be thankful for everything I have and spread positivity and make this a place where anyone can share.
I hope to cover a lot of different topics, ideas, etc., anything I think is worth sharing with my wonderful friends.

Dealing with Fibro-Fog

2009-05-06T08:08:00.004-04:00

Dealing with Fibro-Fog

By Karen Lee Richards

My best friend from Florida came to visit me here in Tennessee so she could take fall leaves back for the children in her Montessori pre-school. In our quest to find the most beautiful leaves, we headed for the Blue Ridge Parkway, well known for its stunning scenery. No sooner had we gotten on the parkway than we found ourselves in the midst of one of the worst fogs I ever experienced. We could literally only see about three feet in front of the car. I was struck by was how similar it felt to being in the midst of a severe bout of fibro-fog!

The cognitive dysfunction so many of us with fibromyalgia deal with daily is aptly described by the term “brain fog,” or by my favorite pet name “fibro-fog.” Our minds feel clouded by a thick fog. We are unable to see (or think) more than a few feet (or minutes) ahead.

See if any of these fibro-fog experiences sound familiar. Do you ever…

…get ready to walk out the door and realize you have no idea where the car keys are?

…put the milk in the cabinet and the cereal in the refrigerator?

…run into an old friend and forget her name?

…find yourself driving down a road unable to remember where you are going?

…buy something, not remembering that you bought the exact same think a week ago?

…try to describe or explain something but you cannot think of the word you want to use?

…stop in the middle of a conversation because you cannot remember what you are talking about?

…forget when you last took your meds?

…bounce a check because you added instead of subtracted?

…show up for your doctor appointment on the wrong day?

The forgetfulness, difficulty concentrating and confusion characteristic of fibro-fog is occasionally amusing and often frustrating. But sometimes it can be downright dangerous –– like forgetting that you have chicken frying on the stove or not noticing that a traffic light has turned red. While it is good to be able to laugh at yourself over the little incidents of forgetfulness, it is important to take steps to improve your cognitive functioning so that you do not jeopardize the safety and well-being of yourself or your loved ones.

Increase Blood Flow

Although a clear-cut cause for fibro-fog has yet to be identified, various brain-imaging techniques have clearly shown that the majority of people with fibromyalgia and/or chronic fatigue syndrome have decreased blood flow, and thereby decreased oxygen, to specific areas of the brain. Therefore, the first step in dealing with fibro-fog is to try to increase blood flow and oxygen to the brains. Here are a few tips to get your blood flowing northward:

Exercise –– Exercise increases blood flow and oxygen to the brain. Exercising with music doubles the effectiveness. Charles Emery, Ph.D., a clinical psychologist at Ohio State University in Columbus, conducted a research project in which participants were tested for mental performance after exercising both with and without music. Participants performed more than twice as well on a verbal fluency test when they exercised with music.
Sleep – Getting enough sleep is critical for good brain function. Not coincidently, getting good restorative sleep is one of the major problems for people with FM. The foods you eat can have a significant effect on how well you sleep. Some foods, like milk and turkey, can help you fall asleep. Others, like caffeine-laden drinks, chocolate, excessive sugar, and MSG, can cause agitation and keep you awake. For additional information about improving sleep, go to the National Fibromyalgia Associations website, www.FMaware.org. If you do a search for “sleep,” you will find several helpful articles.
Breathe –– While breathing seems like a normal, involuntary action, the fact is that most people with FM actually hold their breath much of the time. Although holding your breath is a natural reaction to pain, it deprives your body of necessary oxygen. Try to make yourself aware of times you are unconsciously holding your breath and make a conscious effort to take two or three deep breaths several times a day.
Check medications –– Certain drugs can increase brain fog. Some of the medications that may make your memory worse are: calcium channel blockers (for hypertension), analgesics (for pain), hypnotics (for sleep), and antihistamines (for allergy or sinus problems). If you suspect that one or more of your prescriptions are increasing your fibro-fog, talk with your doctor to see if a lower dosage or a different medication might help.
Improve nutrition –– Recent research suggests that getting enough of certain nutrients –– particularly iron, zinc and B vitamins (especially folic acid, B6 and B12) –– may help cognitive functioning…or at least prevent it from getting worse. Iron and zinc are found in meat, poultry, seafood, whole grains and dried beans. The B vitamins are found in whole grains, meat, poultry, seafood, eggs, dairy products, leafy green vegetables, beans, peas and citrus fruits. Additionally, it is important to fight the free radicals seeking to damage our brain cells by eating a diet rich in antioxidants. Antioxidants are found in fruits and vegetables, especially those with the darkest and brightest colors, like spinach, carrots, tomatoes and red bell peppers.
Consider supplements –– If you feel your diet is not supplying adequate amounts of the nutrients mentioned above, you might consider adding one or more vitamin and mineral supplements. Other supplements that some have found helpful in lessening fibro-fog are Coenzyme Q10, Gingko Biloba and NADH (a coenzyme made from vitamin B2). Always check with your doctor or pharmacist before taking any supplement to make sure there are no dangerous interactions with medications you may be taking.

Mental Exercise

In addition to physical exercise, emerging evidence is showing that mental exercise can also help improve memory, concentration and problem-solving abilities. Mental exercise can be any activity that causes your mind to think logically, focus, strategize, sort, calculate, or create. Choose at least one mental exercise that you enjoy and spend some time each day “working out” your brain. Following are examples of a few brain-exercising activities:

Work a challenging crossword puzzle.
Solve a word search puzzle.
Put together a difficult jigsaw puzzle.
Play a game that forces you to think or strategize, like Scrabble, chess or bridge.
Make up a fairy tale.
Choose a Norman Rockwell painting and create a story about it.
Memorize a poem, proverb or Bible verse.
Read a book.
Play a musical instrument.
Learn a new language.

If you find yourself in the midst of a thick mental fog, do not allow yourself to get lost there. You can work your way through it and find some clarity again. It is ironic that for about a month prior to writing this article, I went through one of the worst bouts with fibro-fog I have ever experienced. I felt like I was living in la-la land. But, using many of these tips, I found my way through the fog…and so can you.

___________________
Reprinted with permission of the National Fibromyalgia Association from Fibromyalgia AWARE, December 2004 – March 2005.

Checking In

2009-04-14T08:53:00.004-04:00

Well it's been a while. I've had good days and I've had bad days.

The weather was nice for a while and I was able to do a little gardening and I was so excited. Something I love to do but can't just do it whenever. My allergies have been killing me though- I am completely miserable.

Easter was so nice here at our house. We had the family over and I actually had a green day that day so that I was able to enjoy it. What a difference that makes.

I think I am still half asleep so if I am not making any sense, that would be one explanation. I am really not in a writing mood but just thought that I would check in.

Article About My Support Group

2009-03-31T18:23:00.005-04:00

This article was printed in today's Charlotte Observer about my ME/CFS/FM Support Group. Luckily I am not in the picture but you can see my mom's right arm in the 2nd row on the far right-LOL.

This group has been very helpful to me and Dr. Lapp is an amazing doctor who is internationally recognized as one of the best FM doctors in the world.

Just so you know, the clutter question came from me since I noticed so many people wanted to clean areas, including me-My target was to work on clearing off a table in my office, 3 times a week, for 30 minutes. Well I haven't been able to start that one yet.

Anyway-here is the article:

Sick and tired finds company
By Karen Garlochkgarloch@charlotteobserver.com
Posted: Monday, Mar. 30, 2009

Dr. Charles Lapp leads a series of free classes at the Sharon Presbyterian Church in Charlotte for people with chronic fatigue syndrome & Fibromyalgia.

Most of the 15 people gathered for a support group this month did not look sick.
But when they began to talk about their common conditions, the list of symptoms went on and on.
Pain, fatigue, depression. Insomnia, nausea, headaches. Muscle spasms, ringing in the ears and sensitivity to heat, cold or light.
Dr. Charles Lapp has heard all of this before. He's medical director of the Hunter-Hopkins Center, a Charlotte clinic that focuses on patients with chronic fatigue syndrome and fibromyalgia. Many group members are his patients.
But instead of letting the support group descend into gloom and despair, Lapp tries to lead with hope and help.
He's currently offering a new series of free classes that help patients take back some control over their lives and better cope with the main symptoms: pain, fatigue and insomnia.
“They're all related to one another,” Lapp said. “If one gets worse, the others get worse. Conversely, if you treat one and it gets better, the others get better, too.”
Some 9 million U.S. adults suffer from chronic fatigue syndrome, but many go undiagnosed, according to the Centers for Disease Control and Prevention. Fibromyalgia affects as many as 6 million, says the CDC.
It's often difficult to distinguish between the two medical conditions. Some experts believe they are separate disorders. Others feel they are different facets of the same disorder. Pain is the primary symptom of fibromyalgia; fatigue is the main symptom in chronic fatigue syndrome.
The course Lapp is teaching was developed by Bruce Campbell, a California educator and psychologist who based the curriculum on his own experience in overcoming these often-misunderstood conditions.
Campbell's personal prescription involved “enforced rest” – setting limits and taking short rest periods every day – in addition to regular exercise, emotional support and medicine for symptom control.
“He was able to totally recover in five years,” Lapp said. “He can easily hike 10 to 15 miles, which is the envy of many patients with chronic fatigue syndrome and fibromyalgia.”
Clutter is common
At the recent support group meeting, Lapp asked the members – mostly women – to identify small, specific tasks they'd like to accomplish. Some mentioned the need to go to bed earlier or exercise regularly. Several wanted to organize their homes and get rid of clutter.
The clutter problem is almost universal with these patients, Lapp said. “They get so distracted that they start multiple projects, and the house ends up … a mess. It's overwhelming.”
As always, the group members offer ideas and support.
“Instead of trying to take on the whole room, maybe you could take on a table,” suggested Maggie Reed, 47, of Fort Mill.
“Or a corner of the table,” said Leslie Vann, 56, also from Fort Mill.
When Lapp asked for ideas on how to prevent fatigue and pain, suggestions included hot showers, massage, deep breathing and petting the dog.
Reed, who has suffered from chronic fatigue syndrome and fibromyalgia since 2006, said she visualizes a backyard pool and the landscaping she'd like to have around it to get her mind off pain or stress. “I go to what I call my ‘happy place,'” she said.
Kebbie Cannon, 45, of Waxhaw, who has had chronic fatigue syndrome for 22 years, said she tries not to get too cold because that causes her muscles to tense up in pain.
To the contrary, Reed said she works to avoid getting too hot. “I start to feel like I'm suffocating.” Several in the room said they also have trouble with heat.
Reed almost cried for joy when she heard that. Until she made these friends, she felt lonely and misunderstood.
Reed was a data analyst at Transamerica in Charlotte before going on medical disability last summer. “It just got harder and harder for me to continue working,” she said.
Having worked since she was 17, it's hard to be at home, “barely able to do a load of wash” or take care of her 13-year-old daughter. Because she doesn't look sick, she says other people view her skeptically. “I look fine, and I'm a large woman. You're automatically perceived as being fat and lazy. There's tremendous guilt and isolation,” Reed said.
The support group helps. “You can get together and make friends and say ‘I can't do it today,' and they understand,” Reed said. “We've had to create our own community because we're the only ones who understand what we're going through.”

What is chronic fatigue syndrome?
In the mid-1980s, chronic fatigue syndrome was first identified as a cluster of symptoms in clusters of patients in a few spots in the United States. Dr. Charles Lapp, then a family physician in Raleigh, identified one such outbreak among all the members of the N.C. Symphony Orchestra. Seven remained ill with chronic fatigue.
“Patients started coming to me with persistent flu-like symptoms,” said Lapp, now medical director of Hunter-Hopkins Center in Charlotte. “They would work one day and have to sleep for two. Perfectly well-adjusted people became disabled almost overnight.”
By the time Lapp notified the federal Centers for Disease Control and Prevention about his findings, the agency had heard similar stories from Lake Tahoe and Rochester, N.Y.
At first, because the illness seemed to strike middle-income, well-educated people, it got tagged with the name “Yuppie Flu.” Patients hated that because they thought it made light of their conditions. In time, researchers confirmed the syndrome was real, and it was given more respectful names – chronic fatigue syndrome, chronic fatigue and immune dysfunction syndrome, or myalgic encephalopathy.
Experts initially believed the syndrome was caused by a virus or retrovirus. But that proved wrong, and later research looked at immune system abnormalities. The most recent focus is on the central nervous system and the body's metabolic system, Lapp said.
Researchers in Spain and England have shown that certain genes in patients with CFS and fibromyalgia are turned off and on differently than those in healthy people, Lapp said. A blood test was recently patented but is not available commercially, he said.
The cause is unknown, and there's no cure.
About 70 percent of people who have chronic fatigue syndrome also have fibromyalgia, and vice versa. It's often difficult to distinguish between the two. Although fibromyalgia is not a new syndrome, it was officially defined by the American College of Rheumatology in 1990 as chronic widespread pain (at least three months duration) associated with at least 11 of 18 pressure points on the body. Like CFS, it can be extremely debilitating and interfere with basic daily activities.
Insurance coverage for chronic fatigue syndrome and fibromyalgia is sporadic, Lapp said. “In our practice, 30 percent of patients get full reimbursement, 30 percent get partial, and the rest get minimal.”
Karen Garloch

10 Reasons to Try Accupuncture

2009-03-28T12:27:00.004-04:00

I have tried accupuncture and unfortunately it did not work for me but I know how accupunture has helped a lot of people and there are so ailments that can by remedied by accupunture so I am posting this for those interested.

Ten Reasons to Try Acupuncture

Acupuncture is a natural therapy that is a form of Chinese medication. It involves inserting hair-thin needles into specific points on the body to stimulate the body’s healing abilities. Acupuncture can be used to heal and overcome a variety of physical and mental health related problems.
Pain Relief
Acupuncture can aid in relieving pain. This is, in part, due to the fact that acupuncture increases the body’s level of endorphins, which are often referred to as “feel good” chemicals. Acupuncture also helps normalize nerve impulses because acupuncture points and the central nervous system are connected.
The Immune System
Evidence has indicated that acupuncture strengthens the body’s immune system and natural resistance. It has been shown that there is an increase in white blood cells, as well as in the level of Alpha, Beta, and Gamma Globulins after an acupuncture treatment. Alpha and Beta Globulins are thought to help white bloods cells better fight infection, while Gamma Globulins assist in the production of immune antibodies.
Drug Recovery
Acupuncture assists in the recovery of drug and alcohol addiction. It does this by helping to reduce withdrawal symptoms, decreasing cravings, relieving tension, and helping people relax. In fact, acupuncture is so successful in drug treatment recovery that many clinics throughout the United States use acupuncture as an integral component of their programs.
Musculoskeletal Disorders
Acupuncture has the ability to release muscle tension, as well as tension in the connective tissues. This allows the lymphatic, nervous, and circulatory systems to function more efficiently. For these reasons, acupuncture is helpful in both prevention and treating musculoskeletal disorders. In fact, sports figures such as Carl Lewis, Charles Barkley, and Jim McMahon are known to use acupuncture in order to improve training and performance, as well as to speed up healing and to manage pain.
Allergies
Allergies are caused by the immune system reacting to substances that are harmless to most people. Environmental factors, such as pollen, dust and chemicals are common causes of allergies. Similar, foods such as milk, wheat, and selfish can cause allergic reactions. Allergies can cause watery eyes, stuffy nose and sneezing.
They can also cause more serious problems, such as joint pain, diabetes, glaucoma, kidney problems, depression, heart palpitations and learning disorders. Through acupuncture, the body can be detoxified and the immune system can be strengthened, thereby causing the body to cease having allergic reactions.
Stress
Stress can lead to more serious health problems, such as heart disease, cancer, stroke, and respiratory problems. According to Chinese medicine, stress causes these problems when the liver energy is out of balance. Therefore, acupuncture helps but this energy back into balance, which relaxes the muscles and brings about peace of mind.
Diseases and Disorder
Acupuncture can help with more than 50 different internal medical problems. Some diseases that have been effectively treated with acupuncture include: bronchitis, asthma, diarrhea, ulcers, and hypertension. The exact acupuncture treatment varies depending on the medical condition and may be used in conjunction with other natural therapies, such as herbs and massage.
Chronic Fatigue Syndrome
Chronic Fatigue Syndrome is often brought on my depression, stress, or an infection. No matter the direct cause, patients with Chronic Fatigue Syndrome have immune system deficiencies and most have a weakness in their internal organs. Acupuncture can be used to improve the body’s immunity and, therefore, eliminate Chronic Fatigue Syndrome.
Menopause
Typical symptoms associated with menopause include night sweats, hot flashes, insomnia, mood swings, and heart palpitations. In Chinese medicine, these symptoms occur when the Yin is out of balance. Yet other symptoms of menopause can include weight gain, hypertension, indigestion, and water retention, these are caused by an imbalance in the Yang.
If these are left untreated, it results in a Qi deficiency, which causes feelings of fatigue, a dry vagina, decreases sex drive, lower back pain, cold extremities, and incontinence. Acupuncture therapy has been shown to help get the Yin and the Yang back into balance, thereby reducing the symptoms of menopause.
PMS and Menstruation
Many women experience both emotional and physical pain and discomfort before and after menstruation. Emotional difficulties can include sadness, anger outbursts, depression, and irritability. Physical pains can include pain in the lower back and the lower abdomen. Acupuncture can help bring the body back into balance and eliminate or lesson physical and social pain associated with menstruation.
Acupuncture is a form of traditional Chinese medicine that is quickly gaining acceptance in Western culture for its proven ability to treat emotional and physical problems without the side effects associated with other forms of medication.

I Failed

2009-03-27T13:59:00.005-04:00

I failed my mission. I am not going to beat myself up over it because I did not do it purposely. I started out with only the best intentions but this damned beast within me prevailed although I am not ready to surrender. Just a speed-bump.

I really wanted to take care of John yesterday while he was sick, and I started out checking on him and making sure he had everything he needed. By lunch time my body gave and I could no longer commit to what I so badly wanted to do- just give back to my husband. God bless him -he is one in a million for he was ok taking care of himself as I lay on the sofa for the rest of the day.

I am crying as I type this because these are the times I just want to say "Just shoot me!" I guess its a good thing I never had children of my own. I am thankful that I have Jennifer and now Payton who I so want to be there for. I also cry when I think about if I had to take care of Payton for one day, could I? Ok now I am really sobbing.

I did not choose this but I am still going to try to use it to my benefit and I am desperately trying to spread the word about Fibromyalgia Awareness. I am still trying to plan something for Fibromyalgia Awareness Day which is May 12th. Don't have it all figured out yet but hopefully I will have details soon.

Being Strong

2009-03-26T09:45:00.004-04:00

Another day of awful symptoms. 100% chance of rain is probably a huge contributor. It just has not been a good month for me. This entire week has been nothing but "Red" days and I have become completely frustrated. I finally had to tell my Fab 5 friends that I could not go out Saturday for our Girl's Day Out. The plan is to go to IKEA and unfortunately I have to accept that I am physically not capable of enduring that and that really pains me. This is another one of those times that reminds me that I am disabled and I don't like it. I am not going to feel sorry for myself however because that really gets you nowhere. Plus John is home sick today-he thinks he might have the flu and he feels terrible. I really want to be there for him and do what I have to, to take care of him like he always takes care of me. I must put my fibromyalgia aside and be strong for him, although I will feel the effects of it later.

I can't really put my fibro aside, I just , for one, day have to ignore myself and how I feel, no matter how bad, so that I can do something for someone else. Everyone always says how you have to take care of yourself first, well this is different. This is my husband who has taken care of me everyday that he is capable and today I do what I must for him. I will pay the price without hesitation.

Married to Fibromyalgia: Lessons Learned the Hard Way

2009-03-24T09:02:00.006-04:00

Here is a blog posting from the spouse of a fibromyalgia patient. His name is Larry Payton and his wife is fortunate to have an understanding husband, something for which I have also been blessed with.

Thank you John for being a wonderful, understanding fibro spouse.

Married to Fibromyalgia: Lessons Learned the Hard Way
For all the information currently available about fibromyalgia, relatively little exists for fibromyalgia spouses. This is unfortunate, since I know that even the strongest of marriages will be tested when faced with fibromyalgia. Most of what I know about being a fibromyalgia spouse, I’ve had to learn the hard way. So, in the interest of helping others avoid my mistakes, I’ve recounted some of the lessons I have learned, in roughly the order I have learned them.
Lesson One: I Can’t Feel Sorry For Myself
As it slowly dawned on me that my wife’s condition would be permanent, and that our lives would not go back to how they had been pre-fibro, I began to feel cheated. My wife and I had always enjoyed being outdoors and active, and a large part of our relationship was based on these common interests (our first date had even been a canoe trip). It looked, now, like these things were gone for us, and that was just the beginning of the changes. Vacations, retirement plans, social engagements- everything had been thrown into a state of chaotic uncertainty.
At first, I think I was stunned by the sheer magnitude of changes that fibromyalgia meant for us, and I felt pretty sorry for myself. My wife’s fibromyalgia had been triggered by a rather serious illness, so for a long time afterward I kept hoping that she would “snap out of it” and be herself again. I know I brooded for quite a while before, finally, accepting the fact that there was no going back. Life had changed. All that was left was to decide what to do about it. This was probably the toughest, and most important, lesson I learned. Everything else I know about coping as a fibromyalgia spouse has flowed from the realization that I can’t afford to feel sorry for myself. I know that many spouses can’t manage to get to this point, and I can only say that for me, I really meant it when I said “for better or for worse.”
Lesson Two: We Need A Plan
Lesson two followed lesson one almost intuitively. Once I accepted that our lives had permanently changed, the next logical question was, “What do we do now?”
Had we not been able to establish new goals together as a couple, I’m sure our marriage would have fractured. Our relationship certainly couldn’t have grown, and in my experience, stagnant relationships don’t last long. We had to take a sober look at what was possible and adjust our long-term goals right along with our daily goals. Doing this brought an enormous about of stability back to our lives, but as I would learn, we still had a lot of adjusting to do.
Lesson Three: Appearances Can Be Deceiving
Some lessons I learned relatively easily, but not this one. I think it is because, unlike my wife, I could sometimes forget about fibromyalgia. For instance, I could go through a whole day of work scarcely thinking about it.
Eventually, though, I came home and if I didn’t quickly remember, I was setting myself up for another tough lesson. Many times, early in her illness, I made the mistake of assuming she felt fine, and she, having been suffering in silence for hours, directed the full force of her pain and frustration at me.
It probably took me longer than it should have, but eventually I learned that fibromyalgia doesn’t look like anything, and even though my wife might appear tranquil, she could be hurting and just barely keeping it together on the inside .
Lesson 4: It’s Not Personal
When, because of my insensitivity, these types of confrontations did occur, I almost always felt blind-sided, because I really didn’t anticipate them. I wasn’t living with fibromyalgia 24 hours a day, so to me her outbursts appeared excessive and irrational. I usually left these situations feeling hurt and more than a little confused.
I felt discounted in other ways, too. Sometimes, I would notice a blank look on her face when I would be talking to her, like she was deep in thought about something much more interesting than what I was saying. Other times, she would go to bed as soon as I got home from work, making me think she would have been happier if I had just stayed there.
I know, now, that these actions were not directed at me personally. The glazed look wasn’t because she was ignoring me; it was because she was having trouble focusing. She didn’t go to bed early to avoid me; she went to bed early to avoid lashing out at me. Knowing these things doesn’t fix everything, but it does help to keep them in mind, especially when I’m feeling neglected.
Lesson 5: Communication Makes Life Easier
One of the smartest things I’ve learned to do since my wife’s illness, whether it’s first thing in the morning or when I get home from work, is to ask her how she is feeling before I say anything else. Sharing this little bit of information has saved us much anguish. It is so much easier for her to tell me how she feels than it is for me to guess (I’m usually wrong). This goes back to the “Appearances Can Be Deceiving” lesson.
Lesson 6: Sometimes I Need to Leave
Sometimes her answer to, “How do you feel?” is a forced, “I hurt,” between clenched teeth. I’ve learned that during these times life is easier for both of us if I make myself scarce. I’m not saying I leave the county or anything, but I might find something to do in the garage for a while. I’ve learned that retreat can be a wise strategy.
Lesson 7: I Have To Slow Down
Learning to live at a pace that is comfortable for my wife has been surprisingly challenging. Slowing down means not only doing fewer things in a day, but also, doing those chosen things at a slower pace. I’m learning to walk slower, to talk slower, and to eat slower. I’ve learned that if we go at her pace, we get to enjoy a lot more of life together.
So, that’s it: seven hard won lessons. Of course, I still need to be reminded of these lessons myself periodically. I’m quite capable of falling into periods of self-pity, and I still can be dumbfoundingly insensitive to my wife’s condition. I don’t know if I’ll ever really be able to eat slower, but I do know I’m learning to be a better fibromyalgia spouse.

Sing Two Songs & Call Me in the Morning

2009-03-22T11:40:00.004-04:00

I have a habit of singing for no reason. I sing whatever comes to mind: how I am feeling at a particular moment, what I am going to do about it, etc. As you can imagine, I sing a lot about pain and fatigue and why me, but I also sing about how I am not going to let it get to me and I am not going to be a victim, although a lot of times I really am feeling sorry for myself. I just make up a tune as I go along and I even try to rhyme words. John asks me "why do you always do that?" and I answer "I am just singing the blues."

Well apparently this may be good for me. I just read an article from the May 2008 issue of O Magazine called "Sing Two Songs and Call me in the Morning" by Sari Harrar. I thought I would share this article here:

Just after she was diagnosed with lymphatic cancer, Maria Logis was possesed by a quirky desire. "Every time I prayed, a voice inside urged me to sing," says Logis, a former human resources executive with Con Edison, New York City's electric company. "I had never sung before. It was baffling."

Encouraged by her sister, Logis went looking for a singing teacher but ended up with a music therapist. Instead of asking her to study scales and belt out show tunes, the therapist encouraged her to improvise---and give voice to her deepest feelings. "I sang about being afraid of the doctors and of treatment," she says. "Lyrics about the despair, sadness, and silence of my life poured out of me. Music made it possible for me to face my fear and anguish."

Until recently, most music therapists have worked exclusively with special groups---kids with disabilities, for example, or the elderly. Early research suggests the practice may ease depression and help control blood pressure. Now a tiny, but growing, group is offering vocal therapy to all adults.

"Nothing accesses the inner world of feelings, sensations, memories, and associations as directly as music does, " says Diane Austin, adjunct associate professor of music therapy at New York University and executive director of the Music Psychotherapy Center in New York. "The voice is like a bridge from your heart to your head. Singing freely releases what's locked up in your body." A pilot study published in the British Journal of Nursing found that singing therapy could greatly reduce the anxiety and depression patients can experience following a major surgery. The effect was strong enough that the authors suggested doctors prescribe therapy before trying antidepressants.

In a session, Austin might start with deep slow breathing and then suggest that you turn each exhalation into a wordless sound. Or that you improvise a melody while free-associating words. The exercises take surprising and revealing turns---playful, silly, angry. "Your voice doesn't lie," she says. "You can have all sorts of self-knowledge, but though deep breathing and using your voice, you can get closer to what's really going on for you."

Since most of us don't have a vocal therapist in the neighborhood, Austin offers the following exercises.

-Breathe out loud: Lie on your back on the floor. Relax, breathe deeply, and as you exhale make a sound. "Just let any sound out that wants to come out," she says. "Play. Be imaginitive like a child."

-Tone: While lying down, sing a long, sustained note on a vowel sound. Take a breath and continue, allowing the pitch to change as it wants. Keep it up for about ten minutes. "This is like meditation," Austin says. Recent research suggests she may be right. A two-year study of elderly people with dementia found that singing or playing instruments in a group once a week slowed the natural rise in blood pressure associated with aging.

As for Logis, her cancer went into remission right before she was scheduled for chemotherapy. But lifting her voice transformed other aspects of her life. A year after her diagnosis, she rented and upright piano and performed songs based on her experience for friends crammed into her apartment. Everyone wept and cheered she says.

FIbromyalgia Awareness Video

2009-03-20T09:41:00.002-04:00

Today is a Yellow Day

2009-03-18T18:12:00.003-04:00

I have developed a system to keep track of how I feel on any given day. It is a very simple system, since I am not good at journaling and going into details about, for instance, what I ate the previous day that is causing my symptoms to act up today, or any other detailed research as to my symptoms causes on a daily basis. I have decided to start small-this does not explain why my symptoms are worse on certain days it basically just shows how I feel on that day.

I print out a monthly calendar and I use color coding to determine how I feel on a particular day. I call it my Fibro Scale and it is very vague; Green for a good day, Yellow for a so-so day, and Red for a bad day. It really doesn't tell me much except how many days I was green, yellow or red. For instance in the month of February I had 4.5 Green days, 12.5 Yellow days, and 11 Red days. So far this month I have had 1 Green day, 10 Yellow days, and 6 Red days, and I think I may consider today a Yellow day.

This really doesn't explain much but I think it is good to keep a record of so you can perhaps show your doctor or if you are trying to get disability this may be helpful so that they can see how you feel on a monthly basis.

I hope to move into more detail eventually as to the causes, but for now I like the way this color coding system is working for me, I just wish I could have more Green days.

Finding Affordable Meds

2009-03-16T10:13:00.003-04:00

Finding Affordable Meds
Your doctor may also be able to help you enroll in a prescription drug aid program like the one sponsored by the Partnership for Prescription Assistance, a coalition of pharmaceutical companies and health-care advocates, says Cheryl Fish-Parcham, the deputy director of health policy at Families USA, another consumer advocacy group.
Another good source for help with finding affordable prescriptions (and all types of medical financial assistance) is MedlinePlus,

Having a Fibro Day

2009-03-14T12:12:00.004-04:00

I feel awful today and I felt awful yesterday. We have some rain here so I am assuming that the weather is affecting my body. Yesterday. I got on the computer for like 5 minutes and then I had to lie down and I stayed on the sofa for the rest of the day and even slept there and could not get up this morning feeling like all of the energy has been drained out of my body. I don't know how to explain the feeling that I have from my skin all the way down to my bones. I know that it sucks being me right now, but I can't complain, my life is good and I am fortunate and thankful for everything that I have, especially for John who if it weren't for him I don't know how I would survive. My parents are the greatest too, they are always here for me too and would do anything for me as well. There are so many people with FM that do not have this and I really feel for them. I am truly blessed.

Pass the broccoli, please

2009-03-11T13:25:00.007-04:00

Pass the broccoli, please
You know that calcium is key for strong bones, but Japanese researchers have identified something else you need: vitamin K. It’s believed that the vitamin, found in broccoli, spinach, and other dark leafy greens, helps calcium deposit in the bones, making them denser. The stronger your bones, the stronger your whole body—and the lower your chances of an injury that could cause back pain.

Fibromyalgia-You Dont Look Sick

2009-03-09T13:25:00.002-04:00

It's a Beautiful Day

2009-03-06T08:44:00.003-05:00

Watching U2 on Good Morning America and I have to agree it is a beautiful day. The sun is shining, the temps are going to reach the upper 70s this weekend, you can't help but feel great-at least mentally. Physically, not so good. I blame myself and I don't apologize for it.
I decided to go to the Southern Spring Show on Wednesday so that I could take pictures of the gardens and flowers. I also ended up buying some kind of Flapjack Cactus, a Desert Rose for me and one for my mom and a Eucalyptus. These are not things I would normally buy but felt possessed to and they were very inexpensive. I wanted to buy a weeping Pussy Willow but I can do that later. I decided to go by myself this time so that I could go at my own pace and leave when I had to. I lasted about 2 1/2 hours which is pretty good for me. I decided to skip the home improvement section of the show. I am very glad that I went and very proud of myself although I knew that I would be paying the consequences later and sure enough I did. I had to rest for the rest of the day and I was in extreme pain. It was still worth it- I need the normalcy.
Yesterday, although in extreme pain, I decided to prune the rose bushes, something which needed to be done and the weather was nice. I also re-potted the plants I bought, except for the Eucalyptus which I will plant outside soon. I was miserable but I kept pushing. I even cooked dinner- I figure I already feel this bad what could be worse. I could not move and last night I had to finally stop. I hate this about myself. I can't pace myself and stop when I know that I should. I want to to do more today although I am statue stiff and in torturing pain, but the beautiful day just keeps calling out to me. I am moving very slowly right now and maybe, I might do some little simple things even though I know I should rest today.

Berlin Student Raises Awareness of Fibromyalgia

2009-03-03T11:05:00.003-05:00

I had to put this article here to applaud Brianna for what she is doing.

School projects abound, but I was intrigued by this one that Berlin resident Brianna Tulin has undertaken. It appears to have taken on a life of its own and gotten attention from a national organization.Brianna's mother has been afflicted with fibromyalgia for many years and this winter she decided to spread the word about the syndrome. She set up a display in the lobby of her school, the Solomon Schechter Day School in West Hartford, on fibromyalgia. When she and her father, Jay, asked state Sen. Donald DeFronzo if there was something the state could do he promised to introduce a bill to the legislature designating May 12 as Fibromyalgia Awareness Day. That bill is pending in the legislature, here's a link to a page where you can track its progress and Brianna said she plans on testifying at an upcoming hearing on the bill. Here she is with her father outside their home the other day.Her efforts caught the attention of the National Fibromyalgia Association. The group highlights efforts its members make to spread awareness of fibromyalgia and it has done this with Brianna. Here's a link to what they've done."I had no idea I would be noticed by anyone," Brianna said about the attention her project has received. "I was shocked but pleased."Sandy Bennett, a spokeswoman for the NFA, said she learned of Brianna's efforts because they contacted another association staffer who deals with advocacy issues. Bennett said she was particularly impressed by Brianna's youth. "She has done all of this while dealing with the challenges of growing up with a sick parent," Bennett said about Brianna in an email to me.Brianna said her mother was diagnosed with fibromyalgia in 1990 and suffers from other health problems as well. These have rendered her bedridden for the past couple of years. Brianna said the project was done for a school assignment. Part of the program at Solomon Schechter calls for students to do what is called in Hebrew a "mitzva," which Brianna said can be translated into English as either a good deed or something commanded by God.She said the project must be something that raises people's awareness about something or solicits their help dealing with a problem, like making donations. Brianna said she thinks awareness of fibromyalgia is limited and chose to do something on her mother's disease because of that. "It's pretty plain but it has everything you need to know," Brianna said about her display at school.She said many people she knows, including fellow students, knew little or nothing about the disease. "People think fibromyalgia is just some random disease that was made up," Brianna said.

10 Ways to Manage Frustration, Fatigue and Pain

2009-03-01T11:57:00.004-05:00

BREATHE. When Fibromyalgia frustration and anxiety are running high, use this simple breathing technique to calm your jitters: Slowly inhale into your belly, hold a few seconds, slowly exhale. Repeat 10 times or until you feel more relaxed.

KEEP IT SIMPLE. When you keep your lifestyle simple you'll experience less stress and fewer flare ups. Let go of non-essential activities and things you don't need that could be draining your energy.

TAKE CARE. Take care of YOU! Take good of yourself before serving others. Focus on your own self care by providing yourself with nurturing and restorative activities on a daily basis. You will be no help to others when exhausted and cranky!

SLOW DOWN. Take a break from the fast lane, the multitasking and your frenetic life! You will enjoy less frustration and greater calm when you slow the pace.BE STILL. Take 10 minutes and sit still with no distractions. Observe your breathing. Observe your thoughts but let them pass. You'll feel less stress and pain and enjoy a sense of calm and rejuvenation if you do this several times a day.

RELEASE RESISTANCE. Notice what you may be resisting. Let go of resistance and worry by allowing the universe to handle the details. This can result in less frustration, fear and pain for you!

ENJOY THE JOURNEY. Much of our pain comes from worrying about the future and regretting the past. Enjoy the present moment by hitting your pause button and living for right now.

FOLLOW YOUR HEART. When you express your deepest passions you will experience joy that can help ease pain, calm anxiety and contribute to greater balance and peace in your daily life.

PRACTICE GRATITUDE. When you are grateful for the good things in your life it helps you see the blessings you enjoy despite your symptoms and frustrations. Accept what you can't resolve at this moment and focus on the positive aspects of your life.

LOVE THYSELF. Can you accept yourself for who you are? This can be life's greatest challenge! Can you see how your illness has changed or transformed you in some way? You possess unique gifts. Explore how you can love your gifts and find the positive qualities you have to offer.

Sam-E for FM & Fatty Liver Disease, etc.

2009-02-26T11:34:00.003-05:00

DescriptionS-Adenosylmethionine is the active Lipotrope form of Methionine (i.e. it is a Methionine-derivative that also contains Adenosine Triphosphate (ATP) within its chemical structure) normally manufactured within the body but also manufactured synthetically for use as a nutritional supplement.
Health Benefits of SAMe
Digestive System
Supplemental SAMe may stimulate the flow of Bile. Supplemental SAMe (600 800 mg per day) may help to prevent Cholestasis (by improving the flow of Bile).
Immune System
Acquired Immune Deficiency Syndrome (AIDS) patients have low endogenous Cerebrospinal Fluid (CSF) levels of SAMe and for this reason supplemental SAMe is under investigation as a potential treatment for AIDS. Supplemental SAMe may help to protect against Liver Cancer in people exposed to Liver carcinogens.
Metabolism
Supplemental SAMe (1,200 mg per day) may significantly reduce the elevated Bilirubin levels that are associated with Gilbert’s Syndrome. SAMe may help to protect Liver cells and may help to preserve Liver cell function in Hepatitis C patients. SAMe is stored in the Liver and supplemental SAMe may enhance the health of the Liver and normalize the function of the Liver:
SAMe may help to prevent the Liver toxicity associated with the Pharmaceutical Drugs used in Chemotherapy.Supplemental SAMe may inhibit Alcohol-induced Liver damage (including Alcohol-induced Fatty Liver).Supplemental SAMe may prevent and cure Cirrhosis. Supplemental SAMe may prevent and treat Fatty Liver.
SAMe functions in over forty biochemical reactions within the body it functions as a Methyl Donor.
Musculoskeletal System
SAMe may stimulate the production of Cartilage. Supplemental SAMe may enhance the differentiation of Chondrocytes into Chondroblasts. Supplemental SAMe (800 mg per day) may alleviate Fibromyalgia:
Specific improvements in Fibromyalgia symptoms caused by SAMe therapy include a significant reduction in the number of trigger points, reduction in Fatigue, reduction in morning stiffness and improvements in Mood.
Supplemental SAMe (400 1,200 mg per day) alleviates Osteoarthritis (by increasing Cartilage formation). Supplemental SAMe may alleviate Fibrositis.
Nervous System
Alzheimer’s Disease patients often exhibit severely decreased levels of SAMe within their Brains (indicating that supplemental SAMe may be beneficial to Alzheimer’s Disease patients):
It was previously (prior to 1995) assumed that Alzheimer’s Disease patients had excessive accumulation of SAMe this assumption has now proven to be erroneous.
SAMe is an essential factor for the regeneration of Axons on Neurons following injury and is also essential for the formation of Myelin Sheaths that surround Axons:
SAMe may help to prevent the death of Neurons during periods of Anoxia (absence of Oxygen).
Supplemental SAMe (400 1,600 mg per day) may alleviate all forms of Depression:
Many studies have confirmed that SAMe is significantly (approximately 15%) more effective for the treatment of Depression than traditional Pharmaceutical Anti-Depressants.SAMe may alleviate Major Depression. SAMe may be especially effective for treating Postpartum Depression.
Supplemental SAMe (after long-term use) may help to treat Migraines. Supplemental SAMe is under investigation as a potential treatment for Parkinson’s Disease.
SAMe's Biochemical Pathway
View SAM’s Biochemical Pathway
SAMe may Enhance the Function of these Substances
Amino Acids
SAMe is essential for the endogenous production of Glutathione within the Liver. SAMe is essential for the conversion of Putrescine to Spermidine. SAMe is essential for the conversion of Spermidine to Spermine.
Enzymes
SAMe is a cofactor for Catechol-O-Methyltransferase (COMT).SAMe is a cofactor for Hydroxyindole-O-Methyltransferase (HIOMT).
Hormones
SAMe is an essential cofactor for the conversion of N-Acetylserotonin to Melatonin.SAMe is an essential cofactor for the conversion of Norepinephrine to Adrenaline.
Lipids
SAMe may increase the endogenous production of Phosphatidylserine (PS).
Minerals
SAMe is an essential cofactor for the endogenous production of all Sulfur-containing compounds within the body.
Neurotransmitters
SAMe may increase the production of Dopamine. SAMe may improve the ability of Neurotransmitters to bind to their respective Neurotransmitter Receptors. SAMe is an essential cofactor for the conversion of Norepinephrine (NE) to Adrenaline.
SAMe may increase the production of Serotonin.
Nucleic Compounds
SAMe is essential for the production of Deoxyribonucleic Acid (DNA). SAMe is essential for the production of Ribonucleic Acid (RNA).
Pharmaceutical Drugs
SAMe may accelerate the onset of action of Imipramine in the treatment of Depression. SAMe may increase the effectiveness of Venlafaxine for the treatment of Depression.
SAMe may Counteract the Toxic Effects of these Substances
Amino Acids
Supplemental SAMe may lower elevated Homocysteine levels.
Bile Pigments
Supplemental SAMe (1,200 mg per day) may reduce the elevated Bilirubin levels that are associated with Gilbert’s Syndrome.
Pharmaceutical Drugs
SAMe may help to prevent the Liver toxicity associated with the Pharmaceutical Drugs used in Chemotherapy. SAMe is speculated to protect against the toxic effects of Doxorubicin to the Heart. Supplemental SAMe may reduce the death-rate from overdoses of Paracetamol:
Animal studies have demonstrated that when rats are given supplemental SAMe within one hour of Paracetamol overdose, death can be prevented in 100% of cases; if supplemental SAM is administered within five hours of Paracetamol overdose, the death rate is significantly reduced.
Recreational Drugs
SAMe may inhibit Alcohol-induced Liver damage:
SAMe may counteract the ability of Alcohol to cause Fatty Liver and may also treat pre-existing Fatty Liver.
SAMe (1,200 mg per day) may counteract the Anxiety and Depression commonly experienced by persons with Drug Dependence (including Opiates dependence) during the detoxification and rehabilitation period.
Environmental Toxins
SAMe may reduce the Liver damage caused by Carbon Tetrachloride.
These Substances may Facilitate the Endogenous Production of SAMe
Alkaloids
Betaine (especially the Trimethylglycine (TMG) form of Betaine) may increase endogenous SAMe levels.
Amino Acids
Methionine is the precursor for the endogenous production of SAMe:
The conversion of Methionine to SAMe requires the presence of Adenosine Triphosphate (ATP) and is catalyzed by the S-Adenosylmethionine Synthetase (SAM Synthetase) enzyme.Half of the total Methionine content of the body is used in the Liver for the production of SAMe.
Carbohydrates
Ribose is a component of the SAMe molecule.
Enzymes
S-Adenosylmethionine Synthetase (SAMe Synthetase) catalyzes the conversion of Methionine to (SAM):
More precisely, SAMe Synthetase + Adenosine Triphosphate (ATP) + Water + L-Methionine = Orthophosphate + Pyrophosphate + S-Adenosylmethionine (SAM).
Nucleic Compounds
Adenosine Triphosphate (ATP) is an essential cofactor for the endogenous conversion of Methionine to SAMe.Adenine is a component of the SAMe molecule (as part of Adenosine Triphosphate).
Vitamins
Folic Acid may facilitate the synthesis of endogenous SAMe. Vitamin B6 may facilitate the synthesis of endogenous SAMe. Vitamin B12 may facilitate the synthesis of endogenous SAMe.
These Substances may Interfere with S-Adenosylmethionine
Recreational Drugs
Excessive Alcohol (ethanol) consumption may decrease the body’s production of SAMe.
These Ailments may Interfere with S-Adenosylmethionine
Aging Process
The body’s levels of SAMe decline in tandem with the progression of the Aging Process. Toxic Effects of S-Adenosylmethionine
SAMe is regarded as a very safe substance the side effect mentioned below occurs in only a minority of individuals.
Nervous System
Supplemental SAMe may cause Nausea in a very small number of persons.
Contraindications
Mania patients should not use supplemental SAMe (as additional SAM can aggravate Mania). Manic Depression patients should not use supplemental SAMe as SAMe’s Antidepressant properties may exacerbate the Manic phase in some Manic Depression patients.
Bioavailability
Early forms of supplemental SAMe were deemed to be poorly absorbed orally, however more recently developed “salts” and enteric-coated versions of SAM are believed to be as bio-available as intravenously-administered SAM.
Endogenous S-Adenosylmethionine Production
The typical adult produces an average of 6,000 – 8,000 mg of SAMe per day. The majority is produced within the Liver.
Dosage Recommendations
The therapeutic dosage of supplemental SAMe is 400 1,200 mg per day.Supplemental SAMe should be consumed on an empty Stomach.
“Waiting Period”
Generally, the longer that supplemental SAMe usage is continued, the more beneficial the results.
Forms of SAMe
SAM Sulfate is comprised of 50% SAM + 50% Sulfate.
Alternatives to SAMe Supplements
The main disadvantage of SAMe supplementation is its very high cost. It is possible to stimulate the body’s endogenous production of SAMe by using supplemental Betaine (Trimethylglycine) + Folic Acid + Vitamin B12

Savella, new drug approved for FM

2009-02-25T10:13:00.003-05:00

FDA OKs Fibromyalgia Drug Savella

Savella Joins Cymbalta and Lyrica as Drugs Approved for Fibromyalgia Patients

By Miranda HittiWebMD Health News

Reviewed by Louise Chang, MDJan. 15, 2009

-- The FDA has approved a new drug called Savella for the management of fibromyalgia.
Savella belongs to a class of drugs called serotonin and norepinephrine reuptake inhibitors (SNRIs), which include some antidepressants.
The drug companies behind Savella -- Forest Laboratories Inc. and Cypress Bioscience Inc. -- report that the FDA approved Savella based on two clinical trials that together included 2,084 fibromyalgia patients who took Savella or a placebo for three months or six months.
Savella trumped the placebo in the percentage of patients of who reported at least a 30% reduction in pain and also rated themselves as being "very much improved" or "much improved" in terms of their fibromyalgia, according to a joint news release from Forest Laboratories and Cypress Biosciences.
Savella was safe and generally well tolerated, according to Forest Laboratories and Cypress Biosciences. The drug companies report that nausea was the most common side effect in the clinical trials and that other commonly reported adverse reactions were constipation, hot flush, sweating, vomiting, palpitations, increased heart rate, dry mouth, and hypertension (high blood pressure).
Savella, which is expected to be available by prescription in March, is only approved for adults. It will bear the same "black box" warning as antidepressants about increased risk of suicidal thinking and behavior in children, adolescents, and young adults.
Savella will get a medication guide outlining its risks. And the FDA is requiring postmarketing studies of the pregnancy and fetal outcomes in women who take Savella while pregnant, and a clinical trial of Savella's effects on babies exposed to the drug from breastfeeding.
Other FDA-approved fibromyalgia drugs include the nerve pain drug Lyrica and the SNRI antidepressant Cymbalta. Other antidepressants may be used to treat fibromyalgia but aren't specifically approved by the FDA for that use.

I Dedicate This to John

2009-02-24T21:27:00.004-05:00

I don't know what I would do without my wonderful husband John. He has been so wonderful and understanding throughout my chronic illness and doesn't seem to mind the sacrifices that he has to make, although I feel guilty about it all, he never complains. John has had to take over most of the household duties because I am no longer able to do them. He is the most amazing man I know- my love, my soul-mate, my companion, my friend.

Here is something written by one of my friends with fibromyalgia who is also fortunate to have such a wonderful husband.

Storms

Outside the sky is almost black and the rain pours down so hard you can see the dents of the rain drops in the dirt of the driveway.
Inside there are children laughing, playing, running around. They are cheery and anxious awaiting a break in the weather so they can move their games outside. And the thunder rolls and the children's hopes of outdoor play are fading, but within a few minutes they are on to other things and it doesn't matter.
Inside, the comfort of the couch is welcoming a sore, sore body. A body in pain, a body that burns with pain of an invader that is not quite understood medically, but the invader is understood by the body. It is rainy and damp and therefore the body hurts, end of story. The joints are swollen, the muscles are tight and no amount of massage or rubbing or heat are going to make a bit of difference to the invader that keeps the body still and keeps it from joining the kids on the floor while they play. The mind remains hopeful that the pain will go away soon, but with every thunder clap and every pounding sound of the rain, the body knows it will not be joining the children today. A welcoming hug from a child causes the body to cringe in pain, but the body refuses to turn the child away, it is not the child's fault the body hurts and the hugs are meant to make it feel better. The hug cures the soul, but alas, not the body. Supper will not be made by this body today, laundry will not be done even though the body knows the children need clothes washed, the dishes will not be done even though the counter is begging to be cleared of them. But don't worry they will get done by the body's soulmate, who upon arriving home from work does not have these chores in mind, but after seeing the body in pain knows that he must pick up the slack. And the body is greatful for the help and relieved to know that these things will be done.
Tomorrow promises a clear and sunny day, for which the body will soak up the sun and should feel better and free from the serious pain that is keeping it from moving off the couch today. The eyes grow weary and burn because they too have muscles that are affected by the invader. The invader is not picky, no, the invader loves all body parts equally and loves to invade them when the weather is damp and dreary. That is when the invader is strongest, it seems to draw it's strength from all this dreary dampness. The invader wins today...but tomorrow the body shall be victorious and once again be strong. The body will take this small victory tomorrow and feel thankful and abundant in health. The body's time will come when the weather changes again and once again is sunny and brite.
And so the body will bid good night and hope for good weather tomorrow.

It's Been Awhile

2009-02-23T08:52:00.003-05:00

It's been a long time since I've been on here. No excuses, just lack of motivation and my fibro has still been pretty bad. It seems to be getting worse. I started going to a support group here in Charlotte for people with CFS & FM. They meet once a month and currently there is a Dr. teaching a course on how to manage your FM on your own. It is very informative and makes a lot of sense. One of the things though is limiting and pacing yourself, and I am still having trouble doing this. I know that I can't do things like I did before but when I am doing something I still do it like I did before and then I pay for it afterward by having a major flare up. I guess I realized that I haven't completely accepted this and still think that I am normal. When I am having a good day I figure I can do anything.

I also finally finished my SS disability application. They are already processing it-we'll see what comes from that.

I have been having a lot of trouble with my arms and at this moment I am having a hard time typing this for the pain so I am going to end this for now but hopefully I can continue to write when I can.

Nothing Works but That's OK

2009-01-09T08:29:00.005-05:00

Well I hope the holidays were nice for everyone and that the new year is starting off with a bang :)

I personally have been having a rough time for the last couple of months but within the last month it has been especially bad. It was more a matter of frustration because know matter what I do or what meds I take, I still feel horrible, and that really gets old when it continues on a daily basis. I was to the point that I was feeling toxic from so many meds, I was just going out of my mind. John took me to the doctor to see if I could try some kind of detox and then start all my meds from scratch to see what is really working . Well my Dr thought it would be best to change one of my current medications first to see if that helped. btw- I don't know if I mentioned before that I stopped taking my tramadol because I felt no difference on it than off of it. Anyway, we all agreed that the Cymbalta was just not working for me. It didn't help with the pain and it was starting to turn me into a different person. He decided to put me back on 450mg of wellbutrin and 40 of celexa. I haven't taken celexa in several years but back then I was taking 120mgs.

Currently I am feeling pretty good. I really think that the cymbalta was bringing me down and along with the tramadol I was like a zombie. I think that it is out of my system but I don't feel that the celexa has completely kicked in, at least not the anti-anxiety part, which wellbutrin doesn't have. I don't feel depressed just very agitated and snippy and I feel bad for those around me while I am like this because I am just snapping at everyone for no reason. Hopefully this will pass. I have also been very emotional where everything makes me cry but its not because of anything sad and its not a bad thing or stemming from feeling down, I just start crying. Hopefully this too will pass.

As for my pain. I have decided that there aren't any meds that are really helping. I am just taking hydrocodone as needed, which doesn't really do much but it does alleviate some of the pain which I am thinking is the arthritis pain. I am still always in pain without any relief-ever.

I am going to try a TENS unit and see if that works to block the pain receptors so that my brain will not know that I am in pain. The problem is it can only be used in one place at a time on your body. By placing the the electrodes(or whatever they are called-fibrofog again) where your pain is causes it to change the signal to the brain to "no pain here" :) Anyway, I hope it works-stay tuned.....

Happy Holidays

2008-12-23T11:15:00.005-05:00

I can't believe Christmas is 2 days away. Luckily I am feeling much better today than I have in a long time.

It has been a terrible last couple of weeks with excruciating pain and fatigue. I went to the doctor and he thought that I might have shingles but I never did develop a rash so I guess it is what it is-part of this mysterious illness that feeds off of me.

I just wanted to say how thankful I am for my wonderful parents who have been there for me always. They try to help me as much as they can. Although they are older, I feel terrible because they are taking care of me instead of me taking care of them. Fortunately my parents are very active and have quite a social life too :) I know that when the time comes and they need me to take care of them, no matter how I feel physically, I will be there for them.

I am also thankful for my wonderful friends, especially Brenda, Lisa, Beth & Robin (The Fab 5 we call ourselves) for they are the greatest in the world. Lisa came to visit last night and I was feeling a little down but she really cheered me up and I think it is because of her that I feel better today. It's like my whole attitude changed and it made me realize that friendship is the greatest gift of all and my friends always have enough friendship to offer me and I always have enough friendship to offer them.

Since I am feeling better, I am going to attempt to cook a traditional Cuban Christmas Eve dinner tomorrow evening for John and my parents. On Christmas day I believe we are going to go over to Jennifer's for Payton's 3rd Christmas.

If I don't return before then I hope that everyone has a wonderful Christmas.

Managing Fibromyalgia - Improving Relationships

2008-12-20T11:52:00.004-05:00

Since I have been feeling horrible lately I am just going to copy an article that I just read that I found interesting. I could have written this article.

Managing Fibromyalgia - Improving Relationships

An Article by: Bruce Campbell PhD

Chronic illness changes relationships, both for the person who is ill and for others as well, creating new strains and frustrations. Sources of frustration for people with CFIDS and fibromyalgia include not feeling understood or accepted, isolation, feeling pressure to do more than is healthy, the unpredictability of symptoms, rejection and abandonment. This article describes seven coping strategies used by people in our self-help course to improve their relationships.

1) Re-Assessing Relationships

People with CFIDS and fibromyalgia often find themselves re-assessing their relationships, making deliberate decisions about who to include in their lives. This re-assessment or "relationship triage" is motivated by two aspects of chronic illness. First, illness imposes limits, which in turn force us to be selective in what we do and who we do it with. Also, illness often makes us feel more vulnerable to those who are demanding or negative. Relationships that are both unrewarding and unnecessary may be eliminated, those that are unrewarding but necessary may be simplified.

I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.

I try to limit contact with hyperactive people, negative people, skeptical people, and demanding people.

I am learning to stay away from those people who add stress to my life and to spend more time with those who keep me laughing and who understand me.

Some relationships are just too costly for me, and I need to let them go. If the person is causing me a lot of stress, making no attempt to understand my illness or just taking more from the relationship than giving, I can't continue to put my previous energy into it. When the person is family, I've learned to back away as much as I can, but it may not be an option to completely cut them off.

2) Seeking Support

Being ill is difficult. Feeling understood and supportive is a balm to the soul. Students in our groups report seeking out contact with fellow patients and also valuing the support and friendship offered by family and other non-patients.

Fellow Patients

Relations with other patients are immensely helpful, because they give me a sense that I have people in my life who truly understand. This has both lessened the frustrations of relationships and reduced the frustration of being ill.

I have a dear friend who has a different chronic condition but who is someone I can share my day and feelings with. It works wonders for both of us. Getting support from people who are in the same place as you helps.

The most helpful relations with patients have been with people who have significantly recovered. They seem to be the most supportive and understanding. Others are less into self-help strategies or genuine support, more into what is the latest miracle cure.

Support from Others

I have found talking with selective friends to be very therapeutic. It makes life with chronic illness a little easier to take.

At first I knew no other people with CFS. Then I met a lot, but isolated myself from healthy people. Now I've been working on nurturing relationships with both sets. I need people I can talk to about my illness, but I also need to get outside the world of CFS as well.

I am really lucky because I have two really good sources of caring friends. First is my church, especially the Bible study group to which I belong. Second is through the business I started a year ago.

3) Practicing Assertiveness

Illness imposes limits. Assertiveness means setting safe limits for oneself, then communicating them to others.

Setting boundaries and keeping them set are big challenges for me. For years I have had ‘welcome' tattooed on my forehead, as if I were a doormat.

I often use the illness as an excuse with those who would obligate me by asking me to be on boards, give showers, serve in the community, etc. At first it was very hard to say no, because I love a challenge or a party, am capable, and like to be active and involved. I've found that some people need to be reminded several times before they stop asking, but that's OK.

When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that ‘it might be too much for me today' or ‘I am not up to doing that at this time' and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.

4) Educating Others Selectively

Patients are sometimes successful in educating others about their illness, but most put limits on their efforts.

When I was first ill, I tried to educate everyone about CFIDS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I'm more selective about who I approach and I've accepted that some may never understand.

I try to help others understand my illness, but I don't force it down their throats. I try to talk openly about my illness without always focusing on it. If being open spurs further questions, then I share what I can. But I no longer waste my energy trying to educate everyone.

I'm OK with the fact that some people are very sympathetic, some people try to understand but never really get it, and that others cannot or will not understand or sympathize at all.

5) Doing Your Part

Chronic illness makes life more difficult for others as well. Family members, for example, may experience loss and feel isolated and helpless. Patients report another strategy for improving relationships is to focus on what they can do to make relationships work.

I try to be the best friend, spouse, daughter and sister I can be. I feel more secure and on equal ground when I feel I'm keeping up my side of a relationship. I can't do this with everyone, so I focus on the most healthy, valuable relationships.

I make time for my marriage. I've found that even if I'm too tired for us to do anything, if I just talk with my husband or sit next to him instead of in a separate chair, and pay attention to what he wants to say, then our relationship is much smoother and happier. He in turn is much more thoughtful of my circumstances and my needs.

I have found that identifying my part in mis-communication or a problem is very helpful.

6) Accepting Help

Patients report relations are improved when they ask for help in specific ways or allow others to set boundaries for them. Good communication can reduce fears of abandonment.

People are often thrilled when I ask for help in clear, practical ways. But I feel challenged to say what I really need without laying heavy expectations on people. My husband and children are always asking me ‘Are you sure you are up for it?' when I agree to go places. They are my protectors and it feels good. When my husband senses that I am isolating myself, he suggests doing things with me that are unstressful like ordering pizza and playing card games with him or all of us going out for a movie.

One of my biggest fears was that I would become such a burden that my husband would abandon me. At one point, he almost did. But we took it as a challenge and now communicate much more openly and honestly and have re-committed to each other.

7) Embracing Solitude

Illness often forces patients to spend much more time alone than before. Some patients see illness as providing an opportunity to develop new solitary interests.

I have really found that I enjoy having solitude. I never had time to do the things I loved the most. I was always in the fast lane, and by the time I got to do something I was far too stressed to enjoy it.

I actually enjoy spending a lot of time alone. After many years of activity and socializing, it is great to have time to pursue my intellectual interests. I like the luxury of not having to hurry. I read a lot, do simple household chores, watch TV, and work on my jewelry hobby. It is great to have the pressure to produce lifted from my shoulders.

Frustration

2008-12-11T07:50:00.003-05:00

Here I am again feeling like crap and I have felt this way for the last few days. I can never figure out why because things happen in conjunction. For example, I lowered my tramadol thinking it wasn't doing anything then I start feeling bad again, but the weather is also rainy and messy and I feel like I have a bad flu. if it weren't for the weather I could say that maybe my tramadol was actually working for me but since the weather affects me, I can't tell which is the cause in this case. It is so frustrating trying to deduce and factor to figure out what works for me. I haven't been using the oil much but when I used it the other day I am pretty sure it helped. My problem is lack of motivation and forgetfulness. I just don't think about using it every day. You would think that with my pain and all that I would do anything but my fatigue makes me lazy and I just lay there putting it off until later. I make it here to the computer on my bathroom rounds. every time I get up to go, I drop in and try to catch up on some e-mail and go back to the sofa. I am so behind on all of my e-mails, I drop in on facebook and care2 as well but can't stay for long. I feel really out of touch. I guess I am.

Rambling About Anxiety

2008-12-04T09:13:00.006-05:00

Well since Tuesday was such a great day I didn't know what Wednesday would bring. It was an ok day-Not as good as Tuesday but totally bearable. I just tried to catch up on things that I haven't been able to do. I did have some swelling in my feet and ankles again but it wasn't that major. I have been feeling a little down and I don't know why. I have nothing to feel down about. I started feeling sorry for myself for no reason. I think that just seeing how hard everything is on everyone now and with the holidays, you can't help but worry about the future.

I might go out with my mom later on but I still don't know. That is the problem with me-I never really can know until the last minute. Some of it is my fibro some is my anxiety. I suffer from anxiety/panic disorder and major depression which I have been treating since I was 19. I have been taking meds for those ever since. I also became an agoraphobic when I first started having panic attacks, for no reason. I could not leave the house, not even get close to the door. Looking back, I can't believe it although I still have a little agoraphobic in me. I feel comfortable and safe inside my own home. I still have panic attacks all of the time but you would never notice it. I have had many attacks in the middle of a conversation or in meetings, etc. but I know what it is and that nothing is going to happen and I just let it pass, no one even notices, unless they can see the thumping palpitations of my heart. I am thankful to a wonderful behavioral therapist named Cheryl for helping me through the agoraphobia and controlling my anxiety. She committed so much of her time to de-sensitizing me to every situation. Every day we would go one step forward. It took several days to desensitize myself into going inside the mall. The first day we drove to the mall (Southpark) and parked in the parking lot. The next day we went into Hecht's (now Macy's), the next day we walked through Hecht's to the entry to the mall, the next day we walked out from Hecht's into the mall, etc., my goal was to make it to the food court in the middle of the mall. We made it and she never pushed me. I would only go as far as I could. Once I had a wedding and a couple of days beforehand she took me to the restaurant where the rehearsal dinner was going to be held and they showed us where we would be sitting and where the restrooms and all exits were. Cheryl did this with a lot of new (post-agoraphobia) situations, it is like I had to re-learn. Churches and movie theaters are the worst for me. I still have problems with those. I can never thank Cheryl enough for being there for me always. She totally changed my life. As for my depression, I need meds for that due to a chemical imbalance. I tried weening off of my meds one time and it was a total disaster. I know I need my meds and I will have to take them for the rest of my life. If it weren't for my meds, I probably wouldn't be here today. Although I want to treat all of my other ailments with alternative treatments, I know I will always need my prescribed meds for my depression. People with FMS also suffer from anxiety and depression or as in my case, vice versa.

I did not mean to go all into that but I guess it helps to always express yourself and your feelings, under the right conditions, of course:)