At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

invisible

Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

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What Am I? Chopped Liver?

I’m thinking of changing the name of my blog to ‘Can Anything Else Go Wrong (with my body)!’:

Today, I went to see the hepatobilliary surgeon, Mr B (that’s the guy who looks after livers, gall bladders and bile ducts) – very nice guy but the news is my gall bladder is coming out! (I will be accepting flowers!)

But firstly, it is off for blood tests and an MRI of my liver (remember that lesion hanging around) because the surgeon may need to play there, too. (Quick aside for the Aussies among us: although we can (if we’re lucky) be bulk-billed for most MRIs, a liver MRI is not covered! It costs $555.00 and more, if you need to be sedated, like me!)

Mr B said that it didn’t look like any sort of cancer (YIPPEE!) but it could be 1 of 3 things (here’s my biology lesson for today):

Seeing as I have something there – this would be the kind we want to hear about.

  • Focal nodular hyperplasia (FNH): the second most common tumour of the liver. FNH is a process in which all the normal constituents of the liver are present but in an abnormally organized pattern. Once again, this kind is BENIGN, rarely symptomatic and there are rarely any complications with this kind of tumour.

Again, wouldn’t mind too much if this is what I have.

  • Adenoma: uncommon BENIGN liver tumours that develop in an otherwise normal appearing liver. However, they can be known to bleed, rupture, bleed to become cancer. Once they are larger than 45-51 mm, 1 in 4 bleed or rupture and 1 in 20 become cancerous. This means that Mr B would be cutting and splicing my liver during the gallbladder operation.

Now for some very interesting information, adenomas were rarely reported before the advent of oral contraceptives (OCPs – the Pill) in the 1960s. Multiple studies have confirmed the association between the Pill and adenomas and have also demonstrated that the development of adenomas increased with the dose and duration of hormonal therapy. (Don’t you think some-one should tell us this stuff? I know there’s an increased chance of breast cancer because doctors have told me so I have that checked regularly; but, this little side effect has not reached my ears until today!)

The annual incidence is approximately 1 per 1,000,000 in women who have never used the Pill, compared to 30 to 40 per million in long-term users (more than 2 years). In a study comparing OCP use in 79 women with adenomas to 220 controls, the largest risk of development of hepatic adenoma occurred in women over the age of 30 years who had used OCPs for longer than 25 months, particularly those who had used OCPs with a high estrogenic component. Or as Mr B said females, on the Pill who are pre-menopausal.

Maybe I just need a sex change – men are diagnosed less often with Fibromyalgia, don’t go on the Pill and don’t have the wonderful experience that I hear menopause to be!

I’ll keep you updated (and if you’re lucky, I’ll tell you all about gallbladder surgery)…

 

Not Dead, Just Resting

So this week, I’ve started a puppet theatre (the rest to be completed on Thursday), looked after the munchkin nephew and worked on my fairy garden so today I’m going to have a rest. No hydrotherapy – just rest…well sort of.

I must hand in my medical certificate to Centrelink, to let them know that yes! I still have fibromyalgia (thanks for asking – NOT!) And I will probably have to stand in line for over an hour to do this. I am actually permitted to post it in but I definitely do not trust Centrelink – they have lost my forms too many times for me to take the risk.

I also have to do that awful squishy-boobie thing: a mammogram. Really not looking forward to this; not only because of the squishy-boobie part but, because it seems that I have very lumpy boobs and so far, in my mammogram life, I have had to submit to a biopsy EVERY time. Luckily for me (knock on wood), nothing malignant has been discovered; so it’s off to radiology again. Remember, ladies, October is International Breast Cancer Awareness Month – don’t be putting off the necessary!

But other than that, I am resting (not even writing any more!)

Fibro – A Greater Impact than Cancer!

Fibromyalgia is disabling (duh!) and has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.

The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records.

As we know, diagnosis of our condition is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.

The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and well-validated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.

The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.

The results of the study highlight the disabling nature of ME/CFS (Just wish our social security departments were given a copy of the report!). However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.

Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and well-being. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional well-being is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.

 

***I apologise if this was difficult to read – but you should see the actual study! I tried, as best I could, to use ‘normal’ English.

A Reflex Action

You know that absolutely wonderful thing, that gorgeous men/women who love/lust after/appreciate a woman do, which makes us squirm, sigh, shriek and purr? The thing that we don’t really talk about yet still can’t get enough of? That thing that gives us such a guilty pleasure that we can’t even watch our beautiful partner perform the act?

Well, I had that same sort of guilty pleasure (although not nearly as pleasurable) today.

Mommy and I snuck away to get a massage from one of the Asian massage places that have popped up everywhere recently. Mommy had a sciatica massage and I decided to try some reflexology. WHAT? you say…it doesn’t even compare! Let me tell you that there are a myriad of similarities: latex (in this case, gloves), lubrication, pleasure and guilt, while trying to enjoy the entire process while a little Asian man (really! I am not being racist – it was an Asian man who was shorter than me!) massaged my feet. Comparable to the act I described earlier, I couldn’t actually watch the man performing the massage – it just felt wrong.

Reflexology is a wonderfully relaxing therapy that works on many levels, soothing, calming, balancing and boosting your entire body. Reflexology is based on the principle that certain parts of the body reflect the whole. Reflex points, which relate to all parts of the body, can be found in the feet, hands, face and ears. These points respond to pressure, stimulating the body’s own natural healing process. The body starts progressively clearing blockages, re-establishing energy flows and balancing itself, resulting in better health. There are many different styles and approaches used in reflexology, however the basic principle is constant. Subtle yet powerful, reflexology is becoming increasingly popular in the world of complementary therapies.

As a therapy, reflexology is not invasive – only the feet, and/or hands and ears are worked (we only did my feet). It is deeply relaxing yet surprisingly energizing – all part of its balancing capacity. You may feel you are being pampered during a reflexology session but do not underestimate the powerful effects this treatment can have on all of your body systems.

All body systems benefit from reflexology but you immediately notice the effect on your circulation, nervous and lymphatic systems in particular. My feet are tingling – and not the yucky FM pins and needles feeling, it’s my blood coursing through all the bits that feel like they normally get detoured.

Reflexology can address all of our particular needs: painful, congested, sluggish or overactive states within the body can be balanced and normalised. A Chinese survey of 8,096 case studies noted a 94% effective or significantly effective rate.

Stress and Anxiety

Lessening of stress and anxiety is demonstrated in twenty-nine reflexology studies with study participants including healthy individuals, senior citizens, women and cancer patients. The stimulation of reflexology’s pressure techniques creates change in the body’s basic level of tension as demonstrated by research showing that reflexology relaxes the body using a variety of measurements: brain waves (EEG), blood pressure, systolic blood pressure, diastolic blood pressure, pulse rate, and anxiety.

Lessening of Pain

Reduction of pain is a significant result of reflexology work. The lessening of pain in response to reflexology is documented in thirty-six studies including individuals of all ages and health states: birthing mothers, menstruating women, phantom limb pain sufferers, lower back pain sufferers, cancer patients, kidney stone patients, senior citizens and individuals with pain resulting from surgery. Such results find explanation is what researcher Dr Nancy Stephenson considers as an effect on the neuromatrix of the brain, an expansion of the Fate Control Theory of Pain. According to Wikipedia: Gate control theory asserts that activation of nerves which do not transmit pain signals, called nonnociceptive fibers, can interfere with signals from pain fibres, thereby inhibiting pain. Stimulating nerves that sense touch, heat, cold and pressure – as does reflexology – overcomes the action of the pain nerves. (YIPPEE!!!!)

Cancer Care

Twenty-four studies conducted by nurses in ten countries show that reflexology helps with each stage of the cancer experience: following chemotherapy, post-operatively, management of symptoms and during palliative/hospice care. Research demonstrates that cancer patients who receive reflexology work show significant improvements in physical and emotional symptoms: lessened pain, anxiety, depression and stress; reduced nausea and vomiting; lowered fatigue and improved quality of life.

Thousands of documented case studies from around the world have demonstrated benefits for:

  • PMT
  • Migraine
  • Sinus
  • Colic
  • Menopause
  • Constipation/Diarrhoea
  • Back Pain
  • Neck Pain
  • Sciatica
  • Shoulder Pain
  • Asthma
  • Stroke
  • Menstrual Irregularities

As my reflexology massage was not the ‘official’ kind, I had a half hour session. If you attend a ‘real’ session, it will usually last about an hour depending on your age and state of health. First sessions tend to be longer as the practitioner needs to take a case history prior to any treatment (Umm, we missed that bit, too!)

The exact number of sessions required depends upon several factors including the condition being addressed and the healing response of the individual. A minimum of 3-4 sessions are usually recommended, however chronic conditions may take longer to respond.

As blockages clear and the body reaches a state of balance, the sessions would be cut back to fortnightly, monthly or whenever the client feels the need. It is generally recommended that sessions should be at least a few days apart to allow the body time to adjust to the changes that are taking place as toxins released from congested systems are processed and eliminated.

So, maybe all I had was a foot and calf massage but it still feels amazing! Perhaps our partners have a new wonderful thing to do for us?

Joy to the World

Joy 1Joy 2When was the last time you laughed until your side hurt from laughing… and not because of your typical aches and pains? Laughter is a natural medicine. It lifts our spirits and makes us feel happy. Laughter is a contagious emotion. It can bring people together. It can help us feel more alive and empowered.

I have happy moments and time with friends in which I feel joyful, but I also must admit that I laugh much less than I once did. Illness has a way of aging us much too soon. It makes us too serious at times, because we have to think about how everything will affect our body.

Joy 3Laughter therapy, also called humour therapy, is the use of humour to promote overall health and wellness. It aims to use the natural physiological process of laughter to help relieve physical or emotional stresses or discomfort. Laughter has been shown to cause multiple physiological changes that may be beneficial to those of us with fibromyalgia. In a recent report, alternative health experts today tout laughter therapy as a mode of healing any disease from a mild fever to even cancer. It has been scientifically proven that laughter is both preventive and therapeutic. Although laughter therapy has not been studied specifically for FM, researchers are uncovering more about laughter in general and in painful conditions such as cancer and rheumatoid arthritis.

Benefits of Laughter

Laughter therapy has been described as great way to relax and de-stress terminally ill patients and those suffering from chronic illnesses. Joy 4Laughter Yoga is one such exercise that works on changing the physical, emotional and mental state simultaneously thereby bringing a positive outlook towards life and circumstances. A good laugh exercises the lungs and circulatory system and increases the amount of oxygen in the blood. The huge therapeutic value of laughter can turn your life and health around. According to some studies, laughter therapy may provide physical benefits, such as helping to:

  •  Boost the immune system and circulatory system
  •  Enhance oxygen intake
  • Stimulate the heart and lungs
  •  Relax muscles throughout the body
  •  Trigger the release of endorphins (the body’s natural painkillers)
  •  Ease digestion/soothes stomach aches
  •  Relieve pain
  •  Balance blood pressure
  •  Improve mental functions (i.e., alertness, memory, creativity)

Laughter therapy may also help to:

  • Improve overall attitude
  • Reduce stress/tension
  • Promote relaxation
  • Improve sleep
  • Enhance quality of life
  • Strengthen social bonds and relationships
  • Produce a general sense of well-being

Great side effects for something that is free and readily available without a prescription! Many of the things in that list are either known or believed to be involved, to varying degrees, in many FM cases.

Most illnesses today are stress related and chronic stress attacks the immune system and makes us vulnerable to infections, virus attack and cancer. In fact, this is a major motive for people taking to Laughter therapy.

Joy 5People practicing Laughter therapy regularly report amazing improvement in their health as well as a more positive mental attitude and higher energy levels.  The first thing participants say is that they don’t fall sick very often; the frequency of normal cold and flu reduces or even disappears. There are daily reports of partial or total cure of most stress-related illnesses like hypertension, heart disease, depression, asthma, arthritis, allergies, stiff muscles and more. While this sounds fantastic, it all makes perfect sense, as laughter is nature’s best cure for stress.

Scientific research by Dr Lee Berk from Loma Linda University, California proved that laughter strengthens the immune system by increasing the number of natural killer cells and increase in the antibodies. The immune system is the master-key of health and if it weakens one is exposed to constant infection and sickness.

Joy 6Laughter Therapy For Reducing Stress

Stress and depression are two major components of ill health. Most health benefits people get are because they are able to manage physical, mental and emotional stress with Laughter Therapy exercises. Once the stress levels are down, the immune system becomes stronger automatically.

Laughter Therapy As An Exercise

Dr. William Fry, a research scientist from Stanford University scientifically proved that 10 minutes of healthy laughter is equal to 30 minutes on the rowing machine. Laughter is the best cardio workout. As an exercise it has similar benefits as compared to any other aerobic activities like jogging, dining swimming and cycling.


Laughter Therapy And Role Of Oxygen

Joy 7

Dr Otto Warburg, German scientist and Nobel Laureate said that the main reason we fall sick is because there is lack of oxygen in the body cells. Laughter brings more oxygen to the body and brain. A good supply of oxygen is the key for maintaining good health as well as healing a variety of illnesses.

Laughter Therapy For Depression

Depression is the number one sickness in the world and millions of dollars are spent on producing antidepressant drugs. Laughter therapy is extremely therapeutic for depression as it helps to release certain neurotransmitters from the brain cells as well as help joy 8people to stay connected and share their feelings and emotions.

Laughter Therapy For Mental Health

A major causal factor of many illnesses is a person’s inability to express their feelings and emotions. People are afraid of reactions and conflict. As a result they suppress and hold their emotions which ultimately affect the immune system adversely leading to a variety of sickness. Laughter therapy is a cathartic exercise which helps people release their blocked emotions in a non-violent way and makes them emotionally balanced. Bangalore research indicates that laughter also helps to increase positive emotions and decrease the negative ones thereby promoting a healthy life.

Joy 9

 

Possible Drawbacks of Laughter (did you ever think you’d hear that?)

Some people with fibro say that laughter can trigger post-exertional malaise – a major upswing in symptom severity after exertion. A long, hard laugh could lead to increased pain, especially if the muscles involved are deconditioned. However, this tendency may be countered by the endorphin release and other changes that are similar to the effects of exercise.

A rare side effect of laughter is brief episodes of syncope (fainting), likely due to laughter-induced changes in the autonomic nervous system leading to reduced blood flow to the brain. It’s unknown whether the autonomic dysregulation and blood-flow abnormalities of FM could increase this risk.