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.

The next PFAM [Patients for a Moment] http://patientsforamoment.blogspot.com/blog carnival, hosted by Leslie at Getting Closer to Myself,  http://gettingclosertomyself.blogspot.com asks the question:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

I’d like you to know:

1. When I choose to hold off committing to something until the day it is scheduled,  it’s not that I don’t want to, but rather because I can’t predict how I will feel by the time that day comes around.   I’d rather not disappoint you by saying “yes” first, only to have to jam out later.
2. When I say no, it is because I evaluated the impact your request will have on my health.  If it is going to affect it in a negative way, I  can’t do it.
3. When I say yes, and make a plan to do it in a way that affects my health the least, accept my decision, rather than complain about it.
4. Don’t stop asking. I’ll surprise you sometimes with what I can, and will, do.
5. Ask me how I am doing once in a while. And not just the superficial “hi, how are you” greeting of the masses. Note, I don’t expect you to ask every day, or even every week.  A sincere “how are you” where you really want to know the answer, shows me that you care.  In particular, when the conversation revolves around the health of other family members, including people I don’t even know, it hurts you did not include me in that conversation.  My perhaps clumsy attempt to convey how much that hurt, sadly, only made you defensive and angry.
6. I’ve learned with a lot of you, it’s best for me to keep my expectations low, so I’m not disappointed.
7. When you don’t ask me to do things with you, and you don’t contact me to see how I am doing, this tells me: even though we are family, I am a very low priority in your life.
8. When I put out a 911 call for assistance, it is not  because I am lazy.  It’s that I physically can’t do what I ask for help for; and I want to give my husband a break.
9. Which brings me to: just because I am married, it did not let the rest of you “off the hook” when I requested your assistance at the time my back pain was at its’ worst.   It hurt me deeply that you did not call, bring a meal, or offer to dust even the smallest knick-knack.  It offended my husband that you thought he could carry this burden, along with his full time job, all by himself. This lack of response played a large role in my and my husband’s decision to be less involved with you, collectively and individually.
10. Living a chronically ill life makes us stronger, smarter and braver.  Stronger because we keep on keeping on in the face of the demands our illness place on our bodies.  We are smarter because we have to evaluate everything we do, to ascertain first, if we can do it at that time, and second, how we can do it in the best way possible for us, with minimal exacerbation of our symptoms.  We are braver because, in the face of sometimes extraordinary odds, we fight like hell to live our best life. And that’s worth fighting for.

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.

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

Here are some things you can do to help spread awareness.

• Read blog entries like this one from Graceful Agony:  http://gracefulagony.wordpress.com/2010/05/12/do-you-know-what-it-is-like-my-perspective/

• And this one from Oh My Aches and Pains:  http://www.ohmyachesandpains.info/2010/05/make-fibromyalgia-visible-top-10-signs.html

• Wear purple or take the Pledge to Care  http://www.fmaware.org/site/PageServer?pagename=community_pledgeToCare in support of those who suffer.

Hug someone you know and love who has fibromyalgia today.  Give them a call, send them an email or Twitter, let them know they are not alone.   Ask if they need help today.

We’d all love ya for it.

The second chronic babe blog carnival is posted on their website.     http://www.chronicbabe.com/articles/834

The topic for the next chronic babe blog carnival [Tuesday May 4th and the deadline for submissions is Sunday May 2]  is learning to live with pain.

The following is a spoken word/poem I wrote to express my feelings on the good and the bad of living in  this challenging situation.

 

 

Smiling Through The Rain

Learning to Live with Pain

Is a Drain

On the Brain

And the Wallet

 

Learning to Live with Pain

Can be pretty lame

I try to re-frame

But it’s not pretty.

 

Learning to live with Pain

Can make one insane

If you let it

[Stay off that train]

 

Learning to live with Pain

There’s something to gain

A new perspective on life

Lived in the slow lane

 

It’s okay in the main

To learn to live with pain

To smile through the rain

‘Cuz the pain waxes and wanes

 

After I was diagnosed in 1996, I continued to work outside the home for as long as possible, mostly in part-time office jobs.  After a while, through a series of layoffs and the like, it became apparent that working wasn’t working.   In a last-ditch effort to attempt to work for someone else, I sought out the services of a placement agency specializing in finding jobs for the “disabled.”   This turned out to be a big mistake.  The agency’s workers treated me with condescension, had no respect for individuality, and tended to put every one of their clients in the same “box”.  It was like they had a check list – oh you have _______ disability, well these are the only jobs you can do.

Well, no-one puts me in a corner, to paraphrase the line from “Dirty Dancing.”

A critical analysis of obtaining employment through this agency led me to the following conclusions:

 

• It would be difficult to predict how you would be treated by your manager, your co-workers, etc.
• Privacy about your medical issues would be tough as there would already be knowledge within the company that you were being placed by this agency; ergo you have some form of disability.  And people like to talk.
• Also challenging to ascertain, it seemed to me, was how long your employment would last.  If the economy took a downturn, who would likely be the first to be laid off?
• But perhaps more importantly than any of this was the fact that, between weekly medical appointments and self-care activities, I required total flexibility in my schedule, something that working for someone else would be less likely to provide.

So I left this agency and started a home based business with my husband doing web design (my husband works full time in I.T.), and writing, both of which are very part time.  I’ve also put together a cookbook for those who suffer from chronic illness and pain.

Now as I awaken feeling stiff and sore, I no longer groan silently to myself and wonder how I’m going to get through the next few hours at work.  In addition, I have the freedom to schedule work around managing my illness, rather than having to schedule the management of my illness around work.

Don’t get me wrong, to admit my limitations, accept where I’m at and how much I can tolerate, and to figure out how to work within my limits was not easy, nor was it without sacrifice.  I struggled for years to acknowledge these facts.

There will always be financial concerns due to added medical expenses, and I carry some guilt over not contributing financially, but try to remember I give in other ways by doing the lion’s share of the home-keeping. I may not bring home the bacon, but I do know how to cook it!

While I do miss some aspects of working outside the home, I remind myself that I am doing as well as I am health-wise because I’ve chosen a different path and I therefore have more time and energy to manage my health.   I’ve also been able to volunteer and that’s cool because I like to help others and it helps me feel like I’m contributing.

A fellow chronic babe told me, many years ago, that having a chronic illness was like having a part time job.  Truer words were never spoken.

 

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.

I’ve participated in my second blog carnival.  The Chronic Babe  http://chronicbabeclub.ning.com blog carnival, hosted by www.fibrochondriac.com

http://www.fibrochondriac.com/2010/03/07/a-carnival-of-our-own/

[On the Chronic Babe forum, I'm known as KD since there are two or three other people that belong to the Chronic Babe forum with the same name as me.]

My submission is this entry:

http://www.bignoise-enterprises.com/blog/?p=553