Making Noises

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.

Jolene over at Graceful Agony http://gracefulagony.wordpress.com/ just gave my blog its’ first award.  Wow was that ever sweet of her!  Jolene copes with chronic pain every day and, as the name of her blog says, does it gracefully and is very supportive of the rest of us that struggle with chronic pain on a daily basis.

Here’s the deal in accepting this award.  I need to pay it forward and pay it back:

• Accept the award, post it on your blog together with the name of the person who has granted the award and his or her blog link.

• Pass the award to other blogs that you’ve newly discovered and let these bloggers know you have chosen them.

I pass this award on to:

Cherry Blossom at Beauty in All Things who writes eloquently, finds gratitude in everything, and takes marvelous pictures:  http://beautyinallthings.wordpress.com/

Katie at Overflowing Brain http://overflowingbrain.com/, who has coped with migraine-like headaches for the past 8 months while attending university full time.  I do not know how she does it. She’s also going through a bit of a rough time with negative comments on her blog and twitter accounts. Her writing is beautiful, insightful and downright funny at times.

Jenny at Cranky Fibro Girl – http://www.jennyryan.com/ Check out her post  You know You’ve Got Fibro If:  http://www.jennyryan.com/?page_id=3673

Julie at Dinner With Julie because of her awesome recipes and her giving spirit:  http://dinnerwithjulie.com/.

Whiskey in My Sippy Cup – http://www.whiskeyinmysippycup.com/ Good, funny writing.  In particular, the post entitled “We’re short a girl, but we’ve got the cup” will make the ladies think twice about ever trying a “Diva Cup!” http://www.whiskeyinmysippycup.com/2010/03/08/diva-cup/

Punkin checking things out

June is Adopt-A-Cat month.  In support of this, one newspaper is taking submissions on adopted pets — be they adopted from a shelter, another family,  or found on the street and rescued.  You can read the stories here: http://www.calgaryherald.com/life/Adopted+Tails/3117880/story.html?tab=PHOT Here is my submission on our sweetheart:

 

Meet Punkin.  We adopted Punkin in 1997 from the CHS.  Punkin is a female calico (as almost all calicos are.)  She is quite spoiled, very vocal and demanding.  We created a monster I guess. Punkin is a “morning cat” and often starts her day at 4:00 a.m. and doesn’t understand why you don’t want to start your day then too! You can imagine this isn’t much appreciated by the humans in the house. When she wants your attention, she will lick your arm, or face, and once she gave me a “wet willy” in the ear with her tongue.  At 4:00 a.m. of course.  She drinks out of the tap in the bathtub, and will sit in the tub until someone comes and turns it on for her.  She likes her toys and still has a lot of kitten in her, even though, at 15, she is considered a senior, and has some arthritis in her lower back near her tailbone. She’s on medication for it.  If you have ever had to give a cat a pill, you can relate to what a challenge it is to administer these potions.   All in all, though, she has “personality plus,” helps make our house a home, and we love her.

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.

“Mr. D” is my husband.  We live in a big city and often have long commutes to and from work, friends, and the like.  Mr. D, a laid-back, relaxed, polite man most of the time, finds an alter-ego when driving.  Think Clark Kent turned into Superman, without the cape, tights and flight capabilities.  Or Bruce Banner transformed into the Incredible Hulk, minus the green, roar, or super-human strength.

He often has tips for new drivers on the speed limit:

• “Gas pedal’s on the right”

• He’s very helpful and points out the posted limit, maybe in case the driver has vision difficulties:  “The speed limit’s 80 km/h, not 60” [or whatever the posted speed limit is.]

• Sometimes he blasts:  “If you can’t drive the speed limit, get off the road!”

• “Pee or get off the pot” – for hesitant, timid drivers.

Other utterances include:

• “Is there a particular shade of green you are waiting for?”
• “Drive like you mean it.”
• “Is this your first day with your new license, or are you trying to quit?”

• “Must have been an option that year” – muttered when the driver fails to signal a lane change.

• “By all means, don’t let someone in.”   Drivers in our city don’t like to change lanes when someone is trying to merge.  When a driver lets us into their lane, the comment is “must be from out of town.”

• Takes pleasure in the fact that, when someone cuts him off to pass him, meets that same driver at the next light.

Note these comments are all uttered in the safety of our own vehicle as a way for Mr. D to let off a little steam.  Unlike a friend of ours who, when someone in front of him failed to proceed through the intersection after the light changed, got out of his car, walked up to the other driver’s vehicle and “offered” to drive the car through the intersection for them!

And above all, Mr. D must be the first driver in the pack, which I suspect has something to do with birth order (he’s the youngest.)

If Mr. D. was a super hero, he’d be a combination of Superman (to fly over vehicles) and The Incredible Hulk (to move the offensive vehicle out of his way…way out of his way!)

Dear Punkin, please note that giving me a “wet willy” with your tongue at 4:00 a.m. will no longer be tolerated and may result in the loss of one of your 9 lives.

At that moment, you were not very cute.

Sincerely, your owner.

Punkin loves laundry day.

Dear Punkin, please confine your vomiting to areas we can actually access to clean up. FYI, right under the middle of our king-sized bed is not one of them. It is a good thing you are cute.

Love, your “slaves.”

Punkin

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

image from www.makeup-becomegorgeous.com

Making up my face takes minutes.  Even in my pre-FM days,  I’d not been a heavy duty make up wearer and, due to sensitive eyes,  can’t wear any make up around my eyes.  I wear glasses, so my eyes might stand out more if they were made up, but because my peepers water so much more with eye cosmetics, it becomes kind of a moot point; by the end of the day, the mascara and eye shadow are gone because of the need to wipe the tears out of my eyes so often.

I keep it simple.  I like the triple duty cosmetic products.  The wipes that cleanse, tone and exfoliate.  The tinted moisturizers with SPF’s.  My cosmetic routine is easy and fast:  After cleansing my face, I moisturize it with a tinted SPF moisturizer and add a sweep of blush to my cheeks and a dash of gloss or lip balm to my lips.  That takes under five minutes.  For those who can wear eye make up, adding a dash of mascara to the lashes and perhaps a bit of shadow would add perhaps another minute or two to the routine.

The KISS principle of make up works for this chronic babe.

Geez magazine accepted my pitch for their latest issue “The Body Issue”.  Below is an slightly edited version of the accepted article What do you want to say to your body?

I am a member of a social networking forum of women with chronic illness called Chronic Babe  (www.chronicbabe.com)  (My handle in that forum is “KD.”)  I posed this question: What do you want to say to your body? These are the answers Geez selected:

You betrayed me so many times I stopped caring about you. I’m sorry. I wish I liked you better. Some days you make me so tired I want to explode. You make nearly every pair of shoes hurt. But you have taught me how to take care of you, to be gentle and patient with myself and others. I’m a slow learner. I’m afraid that you’ll break down long before I’m finished with you. Please be resilient. I can’t say this with complete sincerity but I’m working on it: thank you and I love you. -Grace Grace is 28 with chronic kidney failure  related to (atypical) hemolytic uremic syndrome, fatigue.

Some days you suck. You make life more difficult with your constant need for attention. I suppose if I had been better to you when I was younger, genetics wouldn’t have made that much of a difference. I wish you had an easily recognizable disease so that a diagnosis was possible without a lot of tests. I wish you didn’t give out on me when I know I could have done more a few years earlier. Sometimes you do surprise me though, with the occasional good day. And when that happens, it can be pure euphoria. -Lime_119 depression, chronic back pain and digestive issues.

I cannot level with you. I don’t recognize you. I try to disown you. I get mad at you for hurting and betraying me, even though I know that that “you” that is causing me pain is really me. Pushing you past your limits and not taking no for an answer. For keeping you up all night when you’re dying to rest, and for curling up and shutting out the world when all you really needed was some activity. Altering you with drugs when I don’t know how else to stand the pain — I know that one day I will have to face the consequences of this, but that day is not today.  I have not come to terms with the fact that you are as much me as I am you, and that even though it seems you let me down, those disappointments are just my mind not accepting my limits. We are not on the same page. Maybe someday it will be different. -Aash Aash is a 21-year old, with Complex Regional Pain Syndrome, burning pain.

You’ve betrayed me time after time. I watch my friends live their lives day after day but I’m stuck, because of you. Why couldn’t you have been healthy? -Samantha Tardy  19 year old college student with Postural orthostatic tachycardia syndrome (“POTS”) which causes symptoms of lightheadedness, fainting, dizziness, accompanied by a rapid increase in heart rate within 10 minutes of the time an individual goes from a lying down to standing position.

Stop it! Right. Now. Just, stop it! How many times do I have to tell you? If you kill ME, YOU DIE TOO? -Suzan, 30 something, lupus and fibromyalgia

 

To read some of the others’ responses click on this link:  http://chronicbabeclub.ning.com/forum/topics/what-do-y-ou-want-to-say-to