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.

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.

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.

Chronic Babe’s http://www.chronicbabe.com/articles/843/latest blog carnival asks “Who’s on your team?”  Here’s my answer.

It takes a village of care when you’re chronically ill.  Here’s a special shout-out to some of the members of my “team”:

Randy, my selfless husband. He picks up the slack, works full time, and loves me endlessly.  “Don’t kill yourself” my husband often says when I mention doing something.  And I try to heed his advice. But the less I do, the more he has to, and I have difficulty handling the guilt.  He already does so much!

To be held in the heart of a friend is to be a King.~Bruce Cockburn

Our friends Perry, Darrell, and Steve are always there to help when we need some “heavy lifting” – moving furniture, auto repairs, renovations, etc.  In addition, they are great listeners with beautiful hearts.

Cher is my best friend and like a sister to me.  She is totally awesome, good with knives, there for me, cares and listens and doesn’t just tell me what she thinks I want to hear but rather what I need to hear at the time [and I can say the same to her.]  And we’ve both got the freedom to be ourselves and call each other on our “shit.” I’ve come to realize how rare a friendship we have.

Medically, I want to give huge props to those on my team in the “Healing Arts”:

Chiropractors Greg and Rochelle,

My physiotherapist Adeline, and

Our massage therapist Brina,

all of whom are authentic, kind, and compassionate.

My fitness buddies Debbie, Lilya, and Jane -  we’re called  “The Dream Team” by Jane  – whom I’ve taken the same fitness class with for over 10 years, we get each other through the class, support, laugh, lift up and encourage.  “Absolutely” ladies!

Kevin, whom I’ve known for over 20 years, and my husband’s known since our marriage, is a true friend (he even traveled 1 1/2 hours to visit me in the hospital once after my surgery) and always makes me laugh.

Last but not least, the communities at the Graceful Agony Facebook group and Chronic Babe helps with the isolation one can feel being chronically ill.

Hope you’ve enjoyed the introduction to my little village.

As a chronic babe I define passion as:  A healthy “insanity” – being engaged in the lives of others and in pursuits, hobbies and interests that I love enough to risk a flare up in my symptoms to participate in.

Here are a few of my “loves”:

• Emotional wholeness – growth, self – development, healing the scars of the past, grieving all of this takes work, a lot of work, and sometimes causes a flare in my symptoms. I long to come through the other side of it a better, healthier person for myself and for those around me and to have the best relationship possible with the love of my life – my husband.

• Good food, authentic friendship, and fun:  My husband and I have been part of a group for about two years.  We meet weekly in each others’ homes and “eat, pray and love” together. Food is brought by everyone true potluck style.  There is a genuine community there, and real friendship. As a group, we care, share, listen and pray.  This night, I often don’t get home until past my bedtime.  I’ve recently figured out just how much not enough sleep causes a flare in my symptoms, but being part of this group is worth a few missed zzzz’s.   We are extremely close with one of the couples that we met through that group.

• Bringing beauty to my world (and capturing it to share with others) –  In our yard we have nine flowerbeds.  We have tried to make them as easy-care as possible. We have planted many perennials as they pretty much look after themselves.  The beds still require some weed and water care.  I sometimes wonder what were we thinking. But then I see these and it makes it all worthwhile.  [All of these photos were taken in our gardens.] Gardens are a balm to my soul.

Anemone

Columbine

• Create a clean and de-cluttered space – “chaos without, chaos within”.  Clutter distracts and dirt disturbs. As much as this is important to me,  I had to learn to give myself permission to let lots go to watch the flare-ups.

• As a babe with noise sensitivity, I crave peace and quiet. The outside world often feels like an assault; in my home I keep noise levels low, mute the TV during commercials, rarely play music [and a request to my fellow bloggers:  if you have music on your blog, please provide a ‘mute’ button for us sensitive folks to click on to shut off.]

• Writing and Photography– The hobbies I love, that don’t love me back, or pay the mortgage. But I gotta do it. It’s challenging, cathartic and creative.  On top of the pain and stiffness of fibromyalgia from sitting at the computer, I’ve now got tendinitis issues in my arms and am in physiotherapy for the same. It’d be a little better if I actually made some money from it.

With all of these things, I do wonder if I am I my own worst enemy or what?  When that thought hits, I turn to my Flare Reducer, Laughter – Jokes, silly de-motivator posters, the Big Bang Theory, all make me laugh.  I love to laugh, have a great sense of humor, and it is a great stress release and flare reducer.  It really is the best medicine.

Image from http://weheartit.com/

Parenting and Chronic Illness is the theme for this edition of the chronic babe blog carnival. See http://www.chronicbabe.com/articles/836/ for more information.

I don’t have the mommy gene.  I’ve never been bit by the mommy bug. Oh there was a brief moment in 1987 or so when I was holding a co-worker’s newborn that I felt something that might be a maternal stirring but that was about it.  I blamed that on PMS. I’ve rarely been around children (except for when I was one myself.)  I’d not been pressed into babysitting as a teen or young adult.

My upbringing sucked.  See http://www.bignoise-enterprises.com/blog/?cat=310 for more on that.  How could I be a mom when I had no consistent mom model?  When my own mom died when I was a little girl?   I didn’t have a clue what kind of a mother I’d make given the lack of role models in my life and was terrified to find out.

I still tend to shy away from children but enjoy being around them when they’re older, like after they pass puberty.

My first marriage ended in divorce and I thanked God we didn’t have children. After my first marriage finished, I lived in poverty for a while and couldn’t always afford to feed myself.  I worked but had too much month left at the end of the money.  Sometimes all I had to eat was potatoes. [Which probably explains why I have food insecurity today but that’s another blog post.] That’s not exactly a healthy diet for anyone never mind a child.

When I met the love of my life, he and I discussed children prior to our marriage and decided we didn’t want any.  I was diagnosed six months after we married.

Still, I guess I am a kind of mom.  I’m “mom” to a fur baby; our spoiled rotten cat.  It’s a good thing she’s cute as she is very vocal and demanding when she wants something (kind of like me some might say.) She’s a senior now so requires a bit more care.  Look here http://www.bignoise-enterprises.com/blog/?p=671 for How to Give A Cat A Pill. There are times when, after I’ve cleaned up her vomit for the third time that day, fed her, given her medication for her arthritis and constipation, I’m done.

To be honest, had we had children of the human kind, it would be unfair to them, my husband and to me to be a chronically ill mom. Children are a huge responsibility – I hardly felt qualified, never mind up to the challenge. And, when I hear of parents’ busy, non-stop lives with children –the constant go, go, go:  soccer, hockey, piano lessons, church events, school outings, and the like, I am so very grateful we made the choice to be childless before I got sick.  I don’t know how I would have survived otherwise.

image from we heart it

Laugh and the world laughs with you, weep and  you weep alone – Ella Wheeler Wilcox.

Chronic Babe http://www.chronicbabe.com is hosting the next Patients for a Moment  blog carnival on May 5th.  The topic is:  What’s your most laugh-out-loud illness-related experience?

I love to laugh and have an awesome sense of humor. Sometimes, though, it’s tough to find something to laugh about when you are challenged by living with fibromyalgia, which I was diagnosed with in 1996.    This preamble leads me to recall some LOL Moments:

• In 2009 we went with friends to our city’s zoo.  I decided to rent a wheelchair so that I could last longer and enjoy more.    Little did I know how “tippy” this wheelchair would be.  My friend Steve was pushing me at the time and decided to take the chair on a run at a bit of an incline to get over it.  I was nearly spilled out of the chair in the process.  Fortunately I didn’t fall out but we all had a good laugh as the wheelchair spun crazily.

• I used a wheelchair for the first time in 2008.  My husband was my pusher when I toured the Rock and Roll Hall of Fame in Ohio and Wrigley Field in Chicago that year.  I wondered what people may have thought when they saw that I was able to get out of the chair.  (I pondered exclaiming as  I stood up:  “It’s a miracle!  I’ve been healed!”)

Me being in chairs enabled us to spend more time at these attractions.  It also conserved my energy and reduced my pain levels.  Intellectually I know this.  Emotionally I fight the stigma attached to being linked, however ephermally, to a mobility device.

I prefer to get around under my own steam, even if I run out of it.