Making Noises

Chronic Babe Blog Carnival #12 is live September 7^th, 2010, and the topic is Health Care Reform.

I live in Canada and we have socialized medicine.  For a nominal yearly fee, access to treatment is virtually unfettered.  For example, I’m scheduled for cataract surgery in both eyes in October.  I don’t pay a dime.  In the US, without private insurance, I could pay up to $3,000 per eye.  Depending on the type of lens implant, that could soar to $4,500 per eye. http://www.online-eye-info.com/cataract-surgery-cost.html

The trade off for “free” health care is wait times.  Wait times for surgeries, for medical procedures, for tests such as an MRI.  I will have waited 9 months for cataract surgery.

After hearing some horror stories,  I fantasize about a Utopian Health Care System, where every chronic illness patient has the right to:

1. Not be turned away for treatment, regardless of income, or who their HMO/insurer is.
2. Be able to select a primary care physician of our choosing.
3. Not have to choose between eating and seeing the doctor, buying medicine, or otherwise looking after our health.
4. Not be dictated to by said HMO/insurer as to what treatment, what blood test, what medicine their “patients” can have.
5. Not be treated like drug-seekers in the ER when attending in excruciating pain, or because of an adverse reaction to medicine.
6. Be acknowledged that we may know more about our illness and our bodies than you do. We’re experts in our field.
7. Understanding that we may not fit into your 10 minute-per-patient appointment schedule. We have medical issues that are complex.
8. Accepted as a challenge!  Chronic pain /illness patients may be the most challenging patients you could come across in your practice.
9. Not endure unreasonable wait times. Wait times would be reduced by establishing appropriate levels of equipment, medical personnel, etc. to the demographical region that is served.
10. We really want to be listened to, understood, and treated with respect and compassion.  Please and Thank You.

NB:  This post was originally written on October 24, 2008 in response to a couple news items I had read and revised in August, 2010, for submission to the latest Chronic Babe Blog Carnival (#10) which asks the question:  “How do you Deal with the Medical Establishment.”  Well, sometimes, I rant:

Half of Doctors Routinely Prescribe Placebos:

http://www.nytimes.com/2008/10/24/health/24placebo.html?_r=2&partner=rssnyt&emc=rss&oref=slogin&oref=slogin

Dr. Ezekiel J. Emanuel, one of the study’s authors, said doctors should not prescribe antibiotics or sedatives as placebos, given those drugs’ risks. Use of less active placebos is understandable, he said, since risks are low.

“Everyone comes out happy: the doctor is happy, the patient is happy,” said Dr. Emanuel, chairman of the bioethics department at the health institutes. “But ethical challenges remain.”

Happy?  How would this make me happy?  Why would I be happy about being given a fake or off-label drug that may work. But these aren’t always  the “sugar pill” placebos which are harmless, these are actual prescription medications that could harm a patient.

While the sugar in the placebo pill might give one some sort of sugar high for a few minutes and generate some sort of pseudo-happy feelings,  I doubt this is what this doctor is referring to.  Methinks this doctor and others like him may be the only ones who are happy.   “Happy” that they have done “something” about the patient’s “problem.”  Perhaps happier still that they have gotten  the patient out of their office in record time.  Maybe this one will work, the patient mutters unhappily as they leave the doctor’s office, prescription clutched in their hand.

Fibromyalgia Patients “Difficult”

Dr. William Schreiber, an internist in Louisville, Ky., at first said in an interview that he did not believe the survey’s results, because, he said, few doctors he knows routinely prescribe placebos.

But when asked how he treated fibromyalgia or other conditions that many doctors suspect are largely psychosomatic, Dr. Schreiber changed his mind. “The problem is that most of those people are very difficult patients, and it’s a whole lot easier to give them something like a big dose of Aleve,” he said. “Is that a placebo treatment? Depending on how you define it, I guess it is.”

Okay wait a minute here.  I have fibromyalgia. I didn’t chose this illness, it chose me.  I’m sorry if it makes me a “difficult patient.” If doctors only want the “easy” patients then they should leave medicine.  Have doctors that have that attitude ever been sick?  Or were they just not in line the day that the empathy gene was being passed out?

The reality is some of the treatments work some of the time for some of the people.  Some of the treatments don’t work at all. Often, the treatments cause undesirable side effects.  For me, after I was first diagnosed in 1996,  it became easy for me to fall into chasing the next treatment, the newest medication, the latest supplement, diet, vitamin, herb, etc. touted as being the “fix” for fibromyalgia.  After thousands of dollars spent, and feeling not really that much better,  I’m trying to get off that merry-go-round.

Dr. Mark J. Pellegrino, an MD who has fibromyalgia himself, and who has treated over 20,000 patients at his clinic in Ohio, states in his book “Fibromyalgia – Up Close and Personal”

Understand there is no magical pill that will get rid of all fibromyalgia symptoms.

Gee, not even a placebo?

No wonder chronic pain patients frequently experience depression.  I’d like to see a time where people like Dr. Schreiber walk a day in our shoes.   Maybe then things will change, but the cynic in me whispers I doubt it.

Image From Health Matters Now

Hi!  I’m a wife, an auntie, a daughter, an in-law.  A writer, photographer, Jesus-lover,  church-goer,  non-conformist,  burgeoning activist, recipe developer, voracious reader, patron of the arts [which is a fancy way of saying I watch way too many movies and TV shows], blogger , pet-lover and volunteer.

Favorite quotes include: “Going to church doesn’t make you a Christian anymore than standing in a garage makes you a car” and like to think that “if church were a washing machine, I would be the agitator.”  (Both quotes sources are unknown to me, by the way).

Writing has been a hobby, off and on, over the years.  I have been blogging since 2008. I write – and have written – on a volunteer basis for non-profits.

But Wait…There’s More

1. The illness I live with is:  Fibromyalgia
2. I was diagnosed with it in the year:  1996
3. But I had symptoms since I was a teenager.
4. The biggest adjustment I’ve had to make is: Pacing myself.
5. Most people assume: Those who don’t know me, assume I am “normal.”
6. The hardest part about mornings are: Waking up and the first few steps.
7. My favorite medical TV show is: House, totally.
8. A gadget I couldn’t live without is: my Magic Bag
9. The hardest part about nights are: Forcing myself to go to bed early.
10. Each day I take __ pills & vitamins. (No comments, please) As few as possible I’m terribly sensitive.
11. Regarding alternative treatments I: have tried a few – some work, some don’t.
12. If I had to choose between an invisible illness or visible I would choose: not sure – is “neither” an option?
13. Regarding working and career: I miss working outside the home.
14. People would be surprised to know: I have problems with telling right from left and am directionally-challenged (two symptoms of fibro.) On the positive side, that I type approximately 80 words per minute.
15. The hardest thing to accept about my new reality has been: Reframing the plans and dreams I had for myself; accept my limitations (still working on that one.)
16. Something I never thought I could do with my illness that I did was: Go on long hikes and snowshoe.
17. The commercials about my illness: Are unrealistic.
18. Something I really miss doing since I was diagnosed is: Working full time.
19. It was really hard to have to give up: Doing things in the evenings–socializing, dancing, taking courses.
20. A new hobby I have taken up since my diagnosis is: Photography.
21. If I could have one day of feeling normal again I would: Work at a job outside the home all day and go dancing with my husband that night.
22. My illness has taught me: Some patience, not much, but some.
23. Want to know a secret? One thing people say that gets under my skin is: “Have you tried X”  as if it is a magic bullet “Well so-and-so does X and it helps her.” And since I can’t limit my answer to one thing, a comment that really got my goat was what someone said to me recently “I know someone who cured her fibromyalgia by diet and exercise.” [um, hello, there is no cure]
24. But I love it when people: Encourage me and ask me how I am doing (and really want to hear the answer.)
25. My favorite motto, scripture, quote that gets me through tough times is:

The fellowship of those who bear the Mark of Pain. Who are the members of this Fellowship? Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond.” ~ Albert Schweitzer

26. When someone is diagnosed I’d like to tell them: You are not alone.
27. Something that has surprised me about living with an illness is: how sensitive to sound fibromyalgia makes me.
28. The nicest thing someone did for me when I wasn’t feeling well was: A friend of mine cleaned my house when I hurt my back and couldn’t do a lot of it.  I paid her, but she offered to do it for nothing! My husband does many nice things for me as well.

29. The fact that you read this list makes me feel: Slightly nervous.

30. How I found out about http://gracefulagony.wordpress.com/ (Graceful Agony):  I learned about Graceful Agony’s blog through her blog listing on Chronic Babe’s forum and was invited to join the Graceful Agony facebook group after I had gotten to know Jolene online, through reading and commenting on her blog.  I’m proud to be participating in the first blog carnival for Graceful Agony!

**Portions of this post were originally written in September, 2009 for Invisible Illness Awareness Week and revised for Graceful Agony’s blog carnival.

Necessary, even life-giving in some cases, medications can still “steal” vitamins and minerals from the body.1  It’s good to be aware of the possible nutritional deficiencies that can result from taking them.  Certain beverages, while very enjoyable, are also guilty of this “crime.” Alcohol, coffee, and carbonated beverages seem to be the biggest culprits. Here’s a list of some of the common medications and certain beverages that can “rob” the body of nutrients.

Vitamin A:  painkillers (aspirin, ibuprofen, acetaminophen) and antacids.

Vitamin B complex:

Caffeine, alcohol, antacids, antibiotics, painkillers such as aspirin, acetaminophen and ibuprofen, antidepressants, oral contraceptives.

Vitamin C:

Barbiturates, antihistamines, corticosteroids, alcohol, diuretics, oral contraceptives.

Vitamin D:

Oral contraceptives, cholesterol lowering medications, alcohol, corticosteroids.

Vitamin D is a common deficiency in North America (unless you live in California) because of weak sunlight in the winter months, and sunscreen in the summer ones. Sunscreen’s a good thing, but to get some Vitamin D, it’s been recommended to put on sunscreen after 15 minutes of sun exposure.

Vitamin E:

Tobacco, alcohol, oral contraceptives, pain killers.

Vitamin K:

Antibiotics, alcohol.

Calcium:  ironically, antacids (perhaps excluding Tums, which is calcium), corticosteroids, diuretics.  Carbonated beverages “leech” calcium from the bones.

Magnesium:

Diuretics, alcohol, anti-depressants, estrogen preparations.

Zinc:  corticosteroids, heart medications, estrogen preparations, caffeine, diuretics.

Co-Enzyme Q 10 – Statins (cholesterol lowering medications) and beta blockers, among many others, interfere with absorption.2

Sources for some of the above include:

1.  http://dearpharmacist.com/?p=1289

2. http://en.wikipedia.org/wiki/Coenzyme_Q10

The next edition of the Chronic Babe Blog Carnival is Tuesday April 6th (and re-occurs every other Tuesday thereafter).  The topic for this Blog Carnival is “I can bring home the bacon – thoughts about work and chronic illness.”  You can read more about the details here:  http://www.chronicbabe.com/articles/830/

I’m proud to be submitting my entry for consideration, to be posted separately following this announcement.

Flower from the flax plant

(Taken from the broadcast January, 2010:  On the Line:  Fibromyalgia with Dr. Alison Bested MD and Dr. Alan Logan ND (Naturopathic Doctor)  http://www.ctstv.com/calgary/player.php?ctsvidID=17298&show=On%20The%20Line

Drug treatments include NSAIDs, opiods, anti-depressants, and Lyrica and Gabapentin.

My interest however was in non-drug strategies and treatments.  What I found interesting was that Dr. Bested spoke most often of non-drug treatments.  It’s been my experience that medical doctors are more interested in drug therapies for fibromyalgia. Certainly my medical doctor is. Some of these non-drug therapies include:

• Identifying food sensitivities.  Many patients with fibromyalgia often have sensitivities to wheat, dairy, mold, and corn.  Identifying – and eliminating – sensitivities can lead to a 10% reduction in pain.
• Other dietary strategies include:
  • Watch foods that can increase inflammation at the cellular level.  These include refined sugars, processed grains, corn syrups and trans fats.
  • Fibromites “use up” antioxidants more easily and faster than “normals” and thus require higher levels of the same.  Try to eat a variety of colorful fruits and vegetables as much as possible.  Include green leafy vegetables. Foods high in antioxidants include berries and green tea.
  • Include adequate amounts of protein in the diet.  I’d also like to add – include salmon and other fish that are high in Omega 3 oils (see below.).
  • Supplements are used but are just that – supplements – and do not take the place of a healthy, whole foods diet rich in antioxidants, green leafy vegetables, adequate fiber etc.
• Nutritional oils (Omega 3 and 6 particularly) are effective anti-inflammatories.  Omega 3 oils are the fish oils and flax seed oils.  Omega 6 oils is found in evening primrose oil and flax seed oil (note:  some stomach upset may occur with evening primrose oil.*)   Therapeutic levels must be taken to achieve an anti-inflammatory benefit:  1 gram of Omega 3 and 300 mgs of Omega 6.   Heat is very helpful for fibromites, including infrared saunas, hot tubs, even hot baths.
• Epsom salts in the bath helps detoxify the body.  Fibromyalgia sufferers have problems detoxing.
• Therapeutic massage is helpful and it is recommended that to get the full benefit, fibromyalgia patients have an Epsom salts bath before and after the massage.  Do something relaxing after the massage, rather than stress the muscles more by doing an activity such as grocery shopping.
• Chili pepper extracts, such as capsaicin, can be helpful in pain reduction.
• Exercise is very important.  Start slowly and build up your tolerance. Start moving and keep moving. Dr. Bested spoke of a  woman with fibromyalgia, who had been bed-ridden for 2 years, and she started exercising (gradually, slowly) and is now able to go for walks, go to the mall, etc.  I can attest to the benefits of exercise.  I try to exercise 2  – 3 times a week. My fibromyalgia symptoms are so much better when I exercise, and not as good when I don’t.  You may need to see a osteopath or other medical professional to help put the muscles /joints back into alignment because of exercising — I see a chiropractor on a regular basis.

*As always, consult with your doctor or pharmacist for contra-indications and possible drug interactions with these or any other supplements or medications.

Mandatory disclaimer:  I am not a doctor, nor do I play one on TV (although that would be fun.)  I’m a patient.

Behind the lens

or holding a pen,

my pain disappears,

it seems to end.

The focus required

for both to take flight

robs my illness of power

it seems to take flight.

Such creative endeavors

I forget I’m not

the girl without illness

the girl who’s fraught.

A sick chick no more

as I walk through that door

‘cuz a creative i.d.

has a hold of me.

I found out yesterday I have to have cataract surgery–it’s good and bad news. I see the ophthalmologist next week. This is both good and bad news.  The good news: my crappy, crappy vision that I’ve had since birth will get waaayyyy better post-surgery.  The bad news: the surgery itself and my total squeamishness about anything to do with eyes.With the wait times in this Province, and cutbacks on the number of cataract surgeries, I’m told it could be 2 years before I get surgery. My mother in law had cataract surgery last year and they did the eyes about 6-8 mos. apart or so. I’m informed, however, that if one is still of working age, there is a possibility of “fast-tracking” the surgery — but my worry is that may not reduce the wait time significantly. The cataract in the R. eye  is quite advanced, and in both eyes my distance vision is quite affected, so of course I am concerned about how much my vision will be compromised by the continued growth of the cataracts.

I have known about these cataracts but my last appt. in Nov. 2007 they were not advanced enough to warrant an operation.  I’m alarmed at the rapid progression in just over two years.

Also according to the optometrist, there is the possibility that I will be referred to another specialist [a retinal specialist?] because of my myopia (nearsightedness), something in the eye is already stretched and fragile and the cataract surgery may be a little trickier b/c of that. The ophthalmologist will make that call when I see him.

GOOD TIMES I tell ya GOOD TIMES.

PS – Update January 21, 2009 – the opthalmologist saw me January 19.  There is a weak spot on my retina, so I will be seeing a retinal specialist before the cataract surgery.  If the retinal specialist deems it necessary, there may be a surgery to correct the weak spot.  I’m told this is similar surgery to a laser surgery. The opthalmologist has informed me that it will be 10-12 months for the cataract surgery.  It may be less.  The government hands down quotas to the cataract surgeons in April of each year and there may have been some changes.

Does advertising drive content in magazines?  About a year ago I perused a local health-related magazine (local as in Canadian) and I wonder.   I had started to enjoy the magazine again because it seemed to be focusing more on the right whole foods to eat for good health. Until I got to the issue in question. I enjoyed the rather sensible article entitled “Healthy Weight Loss” about saying no to dieting and resolving to eat for health.  Then, things began to unravel for me. Further on in the same issue, an article entitled “Winning at Losing” seems to advocate using what might appear to be questionable ways to lose weight (a diet of meal replacement powder drinks to replace two meals, “for quickest weight loss results”), and taking a rather questionable supplement to lose weight (Hoodia).   In my opinion, this is rather like  publishing an article about the health risks of smoking and then having an advertisement for a cigarette brand in its pages later.

The article “Diet Wisdom, the 7 Pillars of Health” in my opinion, does the readers a bit of a disservice.  Low-fat meat and dairy products can, and should, be part of a healthy way of eating.  The statement,  “…but it does contain lots of saturated fat” does not apply to all dairy and all meat.  An average (boneless, skinless) chicken breast has approximately 4 grams of fat, half of which is saturated.  Skim milk – while admittedly not particularly palatable – has a trace of fat per 8 oz. serving.   Low-fat cottage cheese (1%) has one gram of fat per ½ c. serving.   (www.dairygoodness.ca) Extra lean ground beef, by law, is required to have less than 10% maximum fat content.  www.beefinfo.org

The way cattle are fed also influences the fat content of their meat.  For example, cattle that are entirely grass-fed have a much lower fat content to their meat than cattle that are grain fed.  “[The grass-fed beef] was over 70 per cent less saturated fat and over 70 per cent less total fat. So, definitely, the pasture beef is lighter than the regular beef. The pasture beef is a healthier product for the consumer.”

See:  http://www.cbc.ca/consumers/market/files/food/beef/index2.html . Also see www.eatwild.com

I’m sure the author of this article is sincere in his attempts to help others on the road to good health; however one wonders about the relationship between publication of his article and the 4 full pages of advertising  of the products that  the company manufactures; the same company the author works for – purchased and which were displayed on pages 73 – 75 and page 77 of this issue.  This gives the appearance of advertising driving magazine content.

I’d prefer to see well-researched, balanced articles, written by unbiased, independent authors with no ties to any products advertised in magazines.  In a perfect world I guess this would happen.

Here’s an interesting article (patient hand out actually) from www.pain-topics.org about how Vitamin D in quantities of up to 2,000 international units/day can help pain relief.  There’s good information in this hand out in an easy-to-read-and-understand format.

http://pain-topics.org/pdf/vitamind-brochure.pdf

For anyone suffering from any chronic pain condition it may be worth a try?  I’ve read other articles about Vitamin D that suggest anyone living north of California has a deficiency because of the lack of sunlight and the weakness of the rays, in the winter months.

Edited to add:  I sent this link to a friend of mine, who advised that: “Absorption studies have repeatedly shown that the only reliable source of Vit D is from solar exposure w/o sunscreen.