dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, June 28, 2011

Tuesday-Newsday #18

In my news today are Warnings & Recalls, Drug News, Announcements, and Migraine/Headache. The final item is a link to a PainSupport newsletter with tips on how to get a Good Night’s Sleep by Jan Sadler.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc., in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*WARNINGS & RECALLS
*DRUG NEWS
This law makes me very nervous. You need to read this article even if you live in another state... it could be coming your way.
*ANNOUNCEMENTS
Lyme Disease: Online Chat this Friday with 2 experts
This Friday, July 1st at noon EST (11 am CST, 10 am MST, 9 am PST) 
Join doctors Dr. Lawrence Zemel and Dr. Daniel Cameron for a chat about Lyme disease, including the controversial issue of whether patients should be treated with long-term antibiotics for chronic Lyme disease. Find all details HERE
Movie Review: Romance and Chronic Illness in "Love Simple"
*MIGRAINE / HEADACHE
*PAIN & SLEEP
A Good Night's Sleep by Jan Sadler of PainSupport.co.uk


Just for Fun: Here's what I have in my living room today...
one Dahlia & three large striped Dianthus.

Saturday, June 25, 2011

"It is better to look good than to feel good" ... say what?

It happens all the time to me... and I’m sure it must for you as well. I’ll run into someone who’ll say to me, “You look great today, you must have gotten over that condition you had” or “You aren’t limping, you must be getting better!”

That’s the problem with having a chronic pain condition. Pain isn’t a tangible thing, something people can see just by looking at you. It’s impossible for them to truly understand how much you hurt, especially if you have made an effort to get dressed up, brush your hair, and actually look in a mirror. For some of us that takes all the energy we’ve got! But it’s like a sort of sabotage. You look better and then others start expecting more of you or making the comments like the ones above which can be emotionally draining.

It’s much simpler with my plants. When they have a problem, it’s obvious from first glance. They wilt, turn yellow or brown, drop their leaves... they really let you know when they aren’t doing well. 

So what should we do? I don’t want to always have to explain my medical condition to people who don’t ‘get it’ every time I want to dress up a bit. I also don’t want to go to church or attend a party wearing my pajamas and bathrobe, with bed-head hair, shuffling along in ratty slippers.

“Any idiot can face a crisis - 
it's day to day living that wears you out.”  
~Anton Chekhov

There has to be a happy medium. The hard part is... it hinges on us. It isn’t fair, but we have to accept it’s all in how we react to the situation. As much as we’d like to believe it, we can’t expect all people to completely grasp our medical issues, particularly if they are merely acquaintances or co-workers. It’s up to you to decide whether to take the time to sit them down and attempt to explain why their comment is incorrect. 

It’s harder still when the person who doesn’t “get it” is a close friend or relative who you’ve already made the attempt to educate. In that case, all you can do is let it go and not let it bother you. Try to have a sense of humor about it, maybe have a few responses you’ve saved up to use for such an event. **

When I try to make light of this type of thing, I always find myself recalling one particular character on Saturday Night Live from years ago. In a parody of suave Latin actor Fernando Lamas, comedian Billy Crystal had a regular skit he did called Fernando’s Hideaway. Billy’s character had a particular phrase he was fond of: “It is better to look good than to feel good.”

If you’d like to watch Billy/Fernando giving this advice, 
here’s a link to him playing this SNL character in a music video: 


We could debate whether or not that life philosophy is good or bad. But when I think of his phrase I always start to laugh because I can see Billy/Fernando acting silly in my head. In a way, I can relate to what he’s saying. In behavioral therapy, they often say to “act as if...” and the feeling will come afterward. If you are depressed and avoiding people, the therapist will say “Act as if you are pleased to see people, make yourself go out and interact, and you’ll eventually start to feel more comfortable with them and even eager to be with others.”

Using this idea of acting “as if"... if we take the time and effort to make ourselves look nice, we may actually perceive less pain or at least feel a little better about ourselves. At a wedding I went to recently, even though I had a high level of pain, I recall having this thought, “I look good in spite of how bad I feel and I’m glad I made the effort.” So I guess I was following “Fernando’s” mantra after all!

**Of course it’s still a major annoyance when someone makes a comment about how we don’t look sick, therefore we must be cured. We need to try to take it as a compliment. I’ve used the responses: “I guess I clean up well but it sure takes a lot of effort”, “Make-up can sure do amazing things,” and when feeling snarky, “It’s not my looks I’m complaining about.”

I found a page of humorous responses on the very appropriately named website ButYouDontLookSick.com. Some of the quips are polite but there are numerous comebacks I don't recommend using if you wish to remain friendly with the commenter. Perhaps this list will inspire you to think up a response or two you feel comfortable using, or it will at least give you a secret laugh and reduce your stress.

Tuesday, June 21, 2011

Tuesday-Newsday #17

Today my featured subjects are Pain News, Fibromyalgia, and Employment & Chronic Pain. The last item is a piece called 'Not The Life I Planned, But A Good Life Nonetheless'. It’s from a website for people who have Fibro/CFS but the information is useful for anyone with a chronic condition.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc., in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*PAIN NEWS
*FIBROMYALGIA



*EMPLOYMENT AND CHRONIC PAIN
*LIVING WITH PAIN

Saturday, June 18, 2011

Recovery : My poem of hope

I was going through some old files today and I found a few poems I wrote years ago, when I was struggling to cope with my chronic illness/pain and my life was out of control.  

When I wrote this one I was trying to convince myself that although was stuck in a painful depressing and terrifying place, I had to hold on to hope that things would get better: I would find doctors who could help me, I would find ways to manage my pain, I would find a new life which would still be full of joy and happiness - different than the life I'd planned, but still very much worth living. I was clinging to that hope as if it was a life preserver and I a castaway on an ocean of uncertainty, because I just couldn't believe in any of it.

But oh, how I wanted to! I knew it was the only thing which could save me. So as part of a therapy exercise, I tried to express my emotional struggle and reach out for that hope. This poem is what resulted. I hope it will bring you hope in your own situation as well.


~* RECOVERY *~

Recovery is a far distant place.
If I reach it, I'll be free.
Sometimes I can't believe it's there,
Though I know it must be.

The struggle to reach there takes pure strength.
I long to reach the goal.
I grapple with the thoughts and fears.
I'm fighting for my soul.

I carry my hope within a sieve.
It leaks as I hurry on,
hoping to reach the finish line
before it all is gone.

My ankles are bound tight in chains
and mired in quicksand.
I strain and pull to free myself
I can barely even stand.

How can I press on toward that place
I want so much to find?
It seems an impossible, hopeless task
And I lack the power of mind.

Still I continue to plod along
the path, trying not to stray,
With much needed help and support at hand
to keep the disease at bay.

The horizon remains just out of reach.
It seems so far away.
But a glance behind reveals the truth:
I've come so far today.

The past is past, the future, ahead.
I must focus just on me.
Be in the now, make the moment count,
each step leads to recovery.


~by Shannon Walker
March 23, 2001

Tuesday, June 14, 2011

Tuesday-Newsday #16

Today my featured subjects are Pain News, Doctors & Ethics, and Lyme Disease. The last link is to a blog post about Coping with Chronic Pain by not panicking and using courage, calm, and control to face the ‘monster’ every day.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc., in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*PAIN NEWS
*DOCTORS & ETHICS
*LYME
Filmmaker revives discussion of Lyme disease ~ See the film trailer by clicking here: “Under Our Skin”
*COPING WITH CHRONIC PAIN

Saturday, June 11, 2011

Embrace the Good Days... and the bad ones, too

My sister-in-law, Barbara, is in California this week. She is visiting Stanford University Hospital to be evaluated by the transplant program for a possible kidney transplant in the future. Barbara has Lupus, Raynaud’s Syndrome, and Antiphospholipid Antibody Syndrome (an autoimmune disorder that causes her blood to form clots).

It was a very long and sometimes terrifying road to diagnosis for her with scary hospitalizations, nasty drug side effects, severe pain, and even amputation. However, despite how much emotional and physical suffering she has endured she still has a positive attitude about life.

When I saw Barbara, I was struck by how upbeat and overtly happy she was. I knew she had spent the day before having tons of tests, getting 23 vials of blood drawn (yikes!), and spending hours talking to doctors about her current condition and all the aspects of a kidney transplant. I thought she’d be overwhelmed, tired, and scared.

She was anything but! 

I told her I was surprised about her mood. She said, “You have to embrace the good days! Today my pain is low and the sun is shining!”

I questioned her about how she manages to be positive when she is lying a hospital bed or having a really severely painful day.

She answered, “When you hurt, you hurt. But when you are lying there you have nothing else to do but relax, don’t talk about it, try to laugh, and smile through it. People will smile back because you’re smiling - and it feels good. It connects us together.”

Barbara has had some lengthy hospitalizations in her chronic illness journey. I asked how she fights against the fear and pain when she’s in that hospital room late at night, all alone, and things are so uncertain.

She told me she tries to block out what’s going on with her body and let her mind take her somewhere else. “There’s a peaceful waterfall I remember from my childhood in New Mexico I sometimes visit in my head,” Barbara said. “I see the spray of the water and let myself get lost in it. It’s very soothing.”

"I go to nature to be soothed and healed, 
and to have my senses put in order."
~John Burroughs

When she’s stuck in the hospital for days or weeks, she misses her dogs Mariposa (a Papillion) and Roy (a Chihuahua). But she uses them to help her cope even though they are not there. “I’ll lay in my hospital bed, close my eyes, and really concentrate... and I can feel them curled up beside me. I imagine stroking their fur and it comforts me and helps take away the pain,” she says with a grin.

When she’s at home and is feeling a need to get away from pain and negative thoughts, she goes to the front room where there’s a large aquarium. She’ll lay on the couch, wrapped up in a cocoon of fluffy blankets and several hot water bottles, and watch the koi fish swim gracefully. “I find it hypnotic and calming, and it can really help when I have trouble sleeping.”

For the times when she is feeling better she likes to get outdoors. “I find nature to be energizing and I put what physical effort I am capable of into working our backyard garden. Last year we grew tomatoes, green beans, potatoes, and had a strawberry patch. Growing my own food is not only important for my medically restricted diet but it also gives me a real connection to nature.”

And when life gets rough and doesn’t seem to give her a break, how does she deal with depression and fear of the future? 

“Sometimes I have to remind myself that ‘this too shall pass’,” she tells me. “I think of those times like a season of the year, like winter. It will fade away. I even embrace the bad days, because I know the sunshine will return and there will be more good days. I hold on to my faith and try keep a loving heart even in middle of the rotten stuff. A loving heart and a smile fills the body with love.” 

When Barbara was suffering with gangrene and partial amputation, the pain was bone-deep and excruciating. Her gangrenous, open foot wound made it agonizing ...


Tuesday, June 7, 2011

Tuesday-Newsday #15

Today my featured subjects are Osteoporosis, Lupus, and Back/Spine Issues. I have also linked to a page called The Warrior’s Guide to Chronic Illness. It’s a list of suggestions to help people face their pain/illness and make sure they are putting themselves first, asking the right questions, and pushing forward through the unknown. It could be especially useful for the newly diagnosed and those struggling against how their lives are being changed by pain/illness. Lately, steps #9 and #10 have figured prominently in my life.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc., in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*OSTEOPOROSIS
*LUPUS
*BACK / SPINE ISSUES
*LIVING CHRONIC