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.

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.

 

 

 

 

 

• 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.

 

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

 

Read what other chronic babes like myself have to say about working and chronic illness – start here and follow the links:

 

http://www.chronicbabe.com/articles/831/

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’ll be participating in the 18th edition of “Patients For A Moment” http://duncancross.net/patients-for-a-moment/ a patient-centered blog carnival created by Duncan Cross – on February 24th.  Leslie at Getting Closer to Myself http://gettingclosertomyself.blogspot.com/2010/02/patients-for-moment-is-here-february.html is the blog host for this blog carnival.  If you wish to participate, click on the link above.
Leslie asks the following question:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

My post, which will take the form of a poem, will attempt to answer those questions.

 

 

I hate like hell to miss anything.  And I really, really hate it when I have to miss something because of my chronic illness. That makes me find a way to turn “can’t” into “can.” To turn “impossible” into “possible.” If I want to do something bad enough, I am motivated to find creative ways to make the things I want to do fit with my third wheel–fibromyalgia. Usually that “something” is travel.

It soothes me to get away from the chaotic (the city)  into the tranquil (nature.) My husband and I both find rest there.  We are fortunate – we live close to one of the most beautiful natural areas in Canada. Kananaskis Country is a 4,000 square km. area in the foothills and mountains of the Canadian Rockies. It is full of hiking trails some of which can be used year round, campgrounds, back country camping, waterfalls, lakes and rivers.

On a hot, humid day in July, we took a short, easy hike:

Troll Falls

In February  2008, my husband and I went snowshoeing with friends at Spray Lakes, which is near Canmore, Alberta in the Canadian Rocky Mountains.  It was only my second time snowshoeing.  The day was clear, crisp and sunny.

Spray Lakes

I find snowshoeing to be easier than cross-country skiing although I was a bit sore.

After our morning of snowshoeing, we stopped for lunch and then went to Lake Louise, Alberta for the afternoon.  We viewed “Ice Magic”, an ice sculpture carving competition.  This is an event that happens every year on the grounds of the Fairmont Chateau Lake Louise Hotel:

“Professional carvers are invited to compete in this prestigious event staged in the shadow of the glacier-clad Mt. Victoria. Twelve teams of three carvers are given 15 blocks of ice, weighing 300 lb each, which they must transform into seven-foot tall world-class ice sculptures in three days. Weather permitting; the sculptures will remain on display through March.” http://www.banfflakelouise.com/events-and-festivals/ice-magic

Prize-winning sculptures are selected by a panel of judges from the National Ice Carving Association. On the Sunday of the competition weekend, you can cast your vote for the People’s Choice Award.

Long days can be good days filled with happy memories.  Sometimes, that’s enough to make up for the symptom flare, post-trip, I know is coming.

*originally published November 26, 2008 and revised May 25, 2010.

 

 

 

 

I love Epsom Salts. When I am sore, tired, or even just cranky, I pour a large amount into my bath and soak for about twenty minutes. When I emerge, I’m feeling a lot better.

So I decided to do some research on this wonderful and inexpensive product.

I learned that the reason I’m better after an Epsom Salts bath is because it is loaded with two minerals – magnesium and sulfur.  According to the Epsom Salts Council, these minerals benefit the body in the following ways:

• relax muscles

• ease migraine pain

• reduce stress

• detox your body

• increase serotonin levels

Exfoliate with Epsom Salts: Step into your shower and, before you turn it on, take some salts in your hands and apply it to your body.    Mix Epsom Salts with petroleum jelly and a bit of lavender essential oil for a moisturizing exfoliation treatment. Add a bit – less than a teaspoon -  of Epsom Salts to your facial cleanser to help cleanse and exfoliate your face.  Spa treatments at a fraction of the price!

Epsom Salts.  It does my body good.

P.S. I also learned plants love Epsom salts too. Sprinkle them around your houseplants, rose bushes, shrubs, even on your lawn. Sage is the only plant that doesn’t like Epsom salts.

*Originally published June 19, 2008 and revised May 25, 2010.