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.

Things were quite rough after Punkin’s death.  Quiet and sad. Too quiet.  We’d planned to wait until next spring to get another pet, however our counselor advised against waiting that long.  Grieve Punkin and find another pet within a month and the recommendation was that it be a different species.  A week later, we were adopted by a cat @ the Humane Society.  We went there to look at a 12 month old beagle; however she was already adopted.  We deliberately picked a cat that did not look either Punkin or Snoops, another cat of ours,  who was black and white, was put down in 2002 because of cancer.

Yes, did you want something?

We named him Dexter.  He is a 4 year old male tabby and very affectionate.

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.

Check it out for some great introductory posts, including yours truly’s.  http://gracefulagony.wordpress.com/2010/08/15/the-kick-off-to-our-new-blog-carnival/

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.

A sad postscript to: http://www.bignoise-enterprises.com/blog/?p=877 Tuesday we made the painful decision to end Punkin’s suffering.  She is not responding to the treatments, and they are stressing her out.  She isn’t eating, or drinking, much and hides a lot.  We have chosen Saturday, July 31st to have her euthanised.  I have made this tribute video, and will be making a donation to the Humane Society in her memory.  She was a beautiful cat, and even got her picture in the local paper, see Punkin, Celebrity Cat http://www.bignoise-enterprises.com/blog/?p=819 for more about that!

Punkin-smallerfile

Image credit: Don, Murfreesboro, TN via Wikimedia

The next edition of the Chronic Babe Blog Carnival asks the question:  The Big Breakdown: When Everything Goes to Hell, What Do We Do?

I suspect everyone would answer this question differently.  I know people that become quiet and contemplative when all hell breaks loose and I know others that do the opposite.  I think it has to do with personality.

Friday July 16th was one of the worst days I have experienced in a while.  Our cat Punkin was diagnosed that morning with kidney disease.  Punkin is 15 and she has been a part of our house since she was 2.  Kidney disease in cats is manageable but incurable.   To add to the stress of the day, we were scheduled to be out of town camping with family for the weekend and had to be there by 5:00 pm that evening to attend a function together at 6 pm.  The only appointment open at the vet was at 3:00 pm  and we had to meet with him and the vet clinic staff to discuss treatments. We also needed to finish packing a few things yet and drive approximately 1 1/2 hours to our destination.

Punkin eats a treat. "No amount of time can erase the memory of a good cat, and no amount of masking tape can ever totally remove his fur from your couch." - Leo Dworken

How does this relate to the blog carnival topic?  During this day from hell, here’s how I made it through.

1. I cried. I let the grief wash over me for a while–spent time sobbing my heart out. Throughout the weekend I tried not to hold back when tears threatened.
2. I reached out. First, I telephoned my sister-in-law to let her know what had happened and to advise that we would arrive late that evening. I proceeded to then contact my husband, my best friend and others with the news.
3. I asked for help.  I asked my husband to call to see if the vet could find some time in between patients to speak with him, as I was too distraught to talk coherently.
4. I took action. I finished as much of the packing as I could manage.
5. I researched. Since I like information about what I have to deal with, I researched feline kidney disease on “Dr. Google” and, at the vet appointment, asked him questions.
6. I focused.  I worked with my husband as a team to “get ‘er done”.  After the vet appointment, we grabbed food to eat on the road, raced home, and on the vet’s advice, took Punkin with us.  We finished packing, which now included what Punkin needed for the weekend.  Once we arrived at our destination, we dropped the RV off at the campsite, did the minimum set up to make Punkin comfortable, and high tailed it to the play.
7. I prayed for rest and for Punkin to be healed.

Note that not all of these were deliberate steps taken on my part to cope, to be honest I was on auto-pilot, but helped nonetheless. Did my symptoms still flare?  Most definitely.  Did my husband and I both wish we had no plans that weekend except  margaritas in our hand that evening and a friend to make them for us? Without A Doubt.  Yet, the weekend’s activities served as a distraction from our “new normal” – owners of a cat with a chronic disease.    Things have come full circle now – I, who needs occasional caregiving (the “caregivee” if you will), have now become a “caregiver.”

And I’ve now realized that, much like my own chronic illness, “my husband and I are in this together” and I’m doing my best to

from Wikipedia: Keep Calm and Carry On was a poster produced by the British government in 1939 during the beginning of World War II, to raise the morale of the British public in the case of invasion. It was little known and never used. The poster was rediscovered in 2000.

We returned from a 3 week RV vacation almost a week ago.  I had more pain then usual when I am on holiday, but “pain doesn’t go on vacation”, it goes where I go and participates in what I do.  Some observations that may help with pain on RV road trips I’ve found are:

• Bless my irritable bladder– bathroom breaks every couple hours force us to get out and walk around, stretching muscles that have been in the “lock and load” sitting position for a while.
• Being thankful –File this one under “things I need to work on” — feeling thankful, rather than annoyed,  at how wireless internet at most of the campgrounds we stayed at sucked.  So my computer time was greatly reduced.  While it was somewhat difficult emotionally to stay unconnected from those at home, my body appreciated it..a bit less pain in my neck and shoulders. The Netbook we’d brought along only has a 10″ screen which caused me to experience difficulties in reading content on it so I rarely did.
• Keep it small–I appreciated the ease of clean up in a 22′ RV, even if the small space made me a bit stir crazy at times.
• Use the force–assisted mobility devices that is (if you don’t have your own.)  At the outlet mall, I used one of their wheelchairs (hubby helped push).  Swallowing some pride helped me conserve my energy for something important I wanted to do later.
• Drinking’s good–drinking more (water) is better.   It’s possible dehydrated muscles are more painful muscles but I’m no doc. This is the point where I curse, rather than bless, my irritable bladder.

Here’s a few pictures of our trip.  (My web host limits me to 2 MB per picture and I lack the knowledge and energy to re-size the bigger ones.)  Hope you enjoy these.

Lighthouse at Whidbey Island, Washington

Sunset at Cannon Beach, Oregon

4th of July Parade on Whidbey Island

A woman and her dog, Cannon Beach, Oregon

I am a quote-collector-aholic.  I haven’t done a “favorite quotes” post in over two years, so it is time.

As someone with a chronic illness, I absolutely identify with this quote:

Our society arbitrarily defines health as the capacity for work and a capacity for enjoyment, but true health is something quite different. True health is the strength to live, the strength to suffer, the strength to die. Health is not a condition of my body; it is the power of my soul to cope with the varying conditions of my body. -Jürgen Moltmann, God in Creation

The importance of friendship:

To be held in the heart of a friend is to be a king.  – Bruce Cockburn

Sometimes, if I don’t laugh at something, I’ll cry:

Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward. – Kurt Vonnegut

Since I struggle deeply with low self-esteem, feelings of inadequacy and fear, this quote by M. Williamson is very helpful and a good reminder.  For me personally, head knowledge of this is one thing, heart knowledge quite another.  I need to “get it” in my heart to live it in my life.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn’t serve the world. There’s nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It’s not just in some of us, it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.~Marianne Williamson

I’m going to be adding to the quotes category more often.  What are your  favorite quotes –add them in the comments section!