Tuesday, March 31, 2009

Article About My Support Group

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

Saturday, March 28, 2009

10 Reasons to Try Accupuncture

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
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 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 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.
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.

Friday, March 27, 2009

I Failed

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.

Thursday, March 26, 2009

Being Strong

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.

Tuesday, March 24, 2009

Married to Fibromyalgia: Lessons Learned the Hard Way

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.

Sunday, March 22, 2009

Sing Two Songs & Call Me in the Morning

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.

Wednesday, March 18, 2009

Today is a Yellow Day

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.

Monday, March 16, 2009

Finding Affordable Meds

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

Saturday, March 14, 2009

Having a Fibro Day

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.

Wednesday, March 11, 2009

Pass the broccoli, please

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.

Friday, March 6, 2009

It's a Beautiful Day

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.

Tuesday, March 3, 2009

Berlin Student Raises Awareness of Fibromyalgia

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.

Sunday, March 1, 2009

10 Ways to Manage Frustration, Fatigue and Pain

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.