“I don’t want to talk about it”

I should go out in the garden and eat worms.  I’m exhausted.  I hurt all over.   It’s hard not to have self-pity.   I TRY to limit my public and private kvetching because I know it doesn’t help . . . me or you.  There’s scientific basis for the harm we do to ourselves when we talk about trauma – any kind of trauma. 

Acrylic on Canvas, by moi

Acrylic on Canvas, by moi

 If you or anyone you know has a “story of pain” (physical, psychological, social, economic etc) read Carolyn Thomas’ My Heart Sisters excellent post.  Here’s a teeny taste:

Rehashing a traumatic story/event does some of the following:

  • puts our system on high alert
  • triggers inflammation
  • triggers the fight/flight response
  • triggers shutdown mode

On the flip side Carolyn talks about the benefits of sharing with close friends:

“Dr. Laura Cousin Klein and her team found that the credit for women’s unique stress reactions may belong to the hormone oxytocin (also known as the “lovehormone”).  It’s the body’s own wonder drug – released when we nurse our babies, for example, as well as during a woman’s stress response. It’s instinctual, it buffers the fight-or-flight response and it encourages us to tend children and gather with other women instead – what’s called our tend-and-befriend response to stress.  This calming response does not occur in men, says Dr. Klein, because testosterone—which men produce in high levels when they’re under stress—seems to reduce the effects of oxytocin. Estrogen, she adds, seems to enhance it.”

Read the entire post “I don’t want to talk about it“- a Judy’s-Must-Read-Blog-Post.

Post-Traumatic GROWTH?

Skimming my surface

tell-tale signs of suffering

The pain buried deep

My haiku was inspired by Carolyn Thomas’ Post-Traumatic Growth: how a crisis makes life better – or not.  Carolyn had a myocardial infarction – the “widowmaker” heart attack.  Since that life altering experience she has been overwhelmingly affected by the ongoing pain of coronary microvascular disease.

Mask by moi

Mask by moi

Until I read Carolyn’s excellent post I had never heard of Post Traumatic GROWTH:

“Post-Traumatic Growth is the experience of positive change that occurs as a result of the struggle with highly challenging life crises.

“Although the term is new, the idea that great good can come from great suffering is ancient.”

“Reports of Post-Traumatic Growth have been found in people who have experienced bereavement, rheumatoid arthritis, HIV infection, cancer, bone marrow transplantation, heart attacks, coping with the medical problems of children, transportation accidents, house fires, sexual assault and sexual abuse, combat, refugee experiences, and being taken hostage.” 

Read this informative and thought-provoking post and Carolyn’s concern for patients & people regarding this concept.  Click HERE

The Mask of Invisibility and Me

In 1996 I contracted an invisible “illness”.  I began experiencing excruciating burning pain in my hands, arms and legs followed by gastrointestinal, cardiological, dermatological, emotional “issues”.  The worst part is I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying between happy, content to annoyed and upset.

DSCN1415

In1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: Unexplainable, unverifiable and psychosomatic. It was a Hysterical Middle Aged Woman’s Syndrome, as doctor after doctor told me – based on test, after expensive test coming back negative – that nothing was wrong with me and to go home and “Get a life”.DSCN1413

Forever imprinted in my memory is the chief of neurology at one of the major medical centers in Los Angeles (the doctor and medical center shall remain nameless because this is a true story)  looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychological issues” – he leaned forward, compassionately touching me on the knee and winked.  “Go home, live a good life and take up a hobby like kick-boxing.”  The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.

DSCN1414

I looked for anyone – gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to put a name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC.  I looked fine, acted fine, all tests were negative.  All I took away from the 100’s of doctor’s visits was a stack of psychiatrist’s cards doctors handed to me on the way out of their office.

After years of escalating pain, exhaustion, depression, countless doctors and tests I really did qualify on all counts as a hysterical middle-aged woman .

Well over a decade after my initial symptoms fibromyalgia was recognized by the medical community as “real” and research has since shown that it’s a central nervous system, brain processing disorder.  

I’m no longer middle-aged or hysterical.  But the doctors were right – it was, it is, all in my head.

This is National Invisible Illness Awareness Week

P.S.  There are hundreds of millions of people with “Invisible Illness” in this world.  Click above to  read more information.  Here’s a tiny sample:

  • Why, when you tell someone who is ill that they look good, they’re offended?
  • Practical ways you can encourage someone who is ill.
  • What’s the difference between a visible and invisible illness when it comes to one’s career?
  • What’s it like to go to college with an invisible chronic illness?

 Check out Carolyn Thomas’ My Heart Sisters –“You look great!” – and other things you should never say to heart patients and lots of other great posts about invisible illness.

Conflicted: Should I hug or SCREAM?

Conflicted

Should I hug or SCREAM

perhaps cry

*

Human condition

Thoughts can betray, lead astray

No one is immune

I just spent an afternoon in an intensive care hospital unit with a colleague.  She had open heart quadruple by-pass surgery. They split her chest open, separated her ribs, stopped her heart, took veins from her legs and grafted them onto her heart.

P1020063

Acylic painting by Lisa,
survivor of a potentially fatal Heart Attack in her 30’s

She had a Widow Maker heart attack – so named because it is usually FATAL.

Listen to what she told me.  It could save your life:  At first she figured it was indigestion, took ant-acid; thought the back pain was because she strained her back;  Symptoms progressed into nausea, fatigue, sweating, (figured something was wrong but she’d feel better in the morning).

When the excruciating pain (as she described it – worse than any childbirth) she didn’t want to go to the ER that night because she was sweaty and needed to take a bath (which she took in the morning before her hair cutting appointment);  Pretended excruciating pain wasn’t anything serious BECAUSE she was “healthy”; During her hair cut she felt faint.  Her hairdresser said it sounded like a heart attack and wanted to call 911; She refused to have her hairdresser call 911, TOLD HER TO FINISH CUTTING HER HAIR, PAID the bill AND THEN DROVE HERSELF to ER (where they immediately wheeled her into surgery)!!!!!!!

My colleague’s story is NOT uncommon.  Why don’t we hear more about Widow Maker Heart Attacks?  Most of the women who have them are DEAD.

I’m screaming at YOU: Stay current. Read Carolyn Thomas  ♥  My Heart Sisters blog  It may not be your life you save but a relative’s, friend’s, colleague’s, client’s . . .  or  . . . it could be YOUR own.

Symptom in women are different from men.  Our Female stubbornness and, dare I say, STOOOOOOOPIDITY has no bounds.  (I know.  I drove myself to the ER when I was having serious heart arrhythmia)

 It’s better to call 911 and be told you’re fine than to die or be disabled for life. 

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW & didn’t know you wanted to know

I’m so grateful to Carolyn Thomas, My Heart Sisters for bringing Invisible Chronic Illness Awareness Week to my attention.   Carolyn suffered a Widow-Maker Heart Attack in 2009 and has Inoperable Coronary Microvascular Disease.

Carolyn’s post on her “30 things”  is wonderful, honest, informative and well written.  

Please read it to get another perspective on invisible illness. 

Carolyn’s intro is perfect so I’m stealing it!  (Don’t tell Carolyn! . . . ).  Here it is:

“Next week is Invisible Chronic Illness Awareness Week and this year, the 2012 campaign organizers have provided a 30 Things template for bloggers like me. Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness which may not be at all visibly obvious to the outside world. This can then make it challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. So with the hope of helping to expand public awareness into next week and beyond, here goes:”

Divinity worn

My choice: A gossamer gown

or a horse hair robe

3 Heads are Better than 2, by Judy

 

1. The illness I live with is: fibromyalgia and chronic heart arrhythmias. Yup plural.  The meds I am on for atrial fib caused another problem with my AV node which caused a problem with my pacemaker which caused .. . 

2. I was diagnosed with it in the year: Fibro – 1996, Heart – 2000ish

3. But I had symptoms since: Looking back I had fibro symptoms as a child.  My heart arrhythmia’s started in the 1970’s.  I believe my heart problems are fibro related as fibromyalgia is a central nervous system disorder.

4. The biggest adjustment I’ve had to make is: remembering that my body is no longer 30 years old and not be upset with myself for not doing MORE, more, more.

5. Most people assume: I’m fine.  When I’m in public I look fine, I act fine. And that’s fine with me.

6. The hardest part about mornings are:  Waking up exhausted and wanting/needing to go back to bed even if I’ve slept 9 hours.

7. My favorite medical TV show is:  I don’t watch medical TV shows or anything that has death, dying, famine, pestilence, flood, suspense or mayhem.  My central nervous system is always on red-alert and anything that is even a tiny bit tense throws it waaaaaaaaay over the top.  I watch a lot of HGTV!

8. A gadget I couldn’t live without is:  Romba.  I could watch her vacuum her little robot wheels off for hours!  If I could afford it I would have a robot clean counters, wash windows and COOK.  The best money I ever spent that I thought I shouldn’t spend.  (I did have a 20% off coupon . . .)

9. The hardest part about nights are: Hoping tomorrow I’ll have energy but knowing I will wake up exhausted.

10. Each day I take __ pills,  8 or 9 but who’s counting . . . two are for fibro the rest are heart meds.

11. Regarding alternative treatments I: have tried most with no change.  I don’t do placebo very well either.

12. If I had to choose between an invisible illness or visible I would choose: NEITHER!  I do think that in many ways visible illness or injury is looked at as legitimate and invisible illness or injury is suspicious – particularly when it’s chronic.   Once I was on crutches for leg surgery. I got so much care and sympathy that I told everyone I was going to keep the crutches and use them when I had fibromyalgia flare ups.

13. Regarding working and career:  I have had to limit the number of people I see on a daily basis.  This past year I’ve had to limit the number of days in the office.  If I see too many people it takes me days to get any energy back.  The older I get the less resilient I seem to be.

14. People would be surprised to know:  At home I sit and stare a lot. I’m not always cheery and energetic.  When I’m at work I truly am delighted to see clients and I am able to keep my focus for and on them and push everything else into the background.  When I notice pain, fatigue  or irregular heart beats during a session then I know I’m not doing well at all.

15. The hardest thing to accept about my new reality has been:  Not having the kind of energy I used to have, want to have and how unproductive I feel.  The hardest thing to DO is pace myself.  When I’m feeling ok I tend to do too much and then  I create a “fibro flare”.

16. Something I never thought I could do with my illness that I did was: Teach 4 day intensive for the Academy for Guided Imagery.  The teaching is from  9 am to 5 pm and then the faculty debrief etc until 6.  I take a nap during lunch.  The incredibly wonderful students that take the training keep me enthused and stimulated.  After the 4 days I crash for days.  It’s worth it.  I love teaching.

17. The commercials about my illness:  I’m glad that the words Fibromyalgia and Atrial Fibrillation are becoming known.  But all the commercials about medication in general drive me nuttier than I already am.  They make it sound like all you do is take a pill and the world is wonderful.  (The list of side effects makes me smile – I’ve had most of them)

18. Something I really miss doing since I was diagnosed is:  Spontaneity.  I never know how I’m going to feel.

19. It was really hard to have to give up:  My previous way of living.  After all these many years I still have a difficult time pacing myself.

20. A new hobby I have taken up since my diagnosis is:  Taking naps.

21. If I could have one day of feeling normal again I would:  I’ve come to realize that what I’m feeling and how I’m living IS my new normal.  I can no longer remember how I felt before my fibro and heart problems really flared.

22. My illness has taught me:  We all share invisible hurts, scars, pains and sorrows.  Invisible emotional hurts and pains are much more difficult than the physical.  In a weird way I am blessed.

23. Want to know a secret? One thing people say that gets under my skin is:  Give me advice on what I can do, should try to be “cured” or feel better.  After 16 years I’ve read books, articles, blogs, research and have pretty much tried everything known to man (at this point in time).   I’m sick and tired of trying “miracle” cures and going to health care appointments.  I’ve tried acupuncture, herbs, vitamins, yoga, body work, imagery, hypnosis, been to over 30 different kinds of doctors etc.  Enough!   The only thing I haven’t tried is being stung by a bee 3 times a day.  Ouch! (I saw a woman at a fibro conference gave a demonstration)  Thank goodness I’m allergic to bee stings . . . or I would have tried that . . .

24. But I love it when people:  Forgive me for not calling back, forgetting their birthdays, understanding how difficult it is for me to make long-term commitments or plans since I never know how I will feel.

25. My favorite motto, scripture, quote that gets me through tough times is: ” This too shall pass”.  My Mother always said that.  She was right.  Everything passes.  This life is just a small blip in eternity.

26. When someone is diagnosed I’d like to tell them:  Your life won’t stop even if your health has. Do what you can when you can, if you can.

27. Something that has surprised me about living with an illness is:  How exhausting and isolating it is.

28. The nicest thing someone did for me when I wasn’t feeling well was: To be honest, I can’t think of anything.  People do nice things for me all the time that have nothing to do with how I feel.  Nice!

29. I’m involved with Invisible Illness Week because:  I believe that it is the only way to make invisible illness VISIBLE is to share and talk about it.

30. The fact that you read this list makes me feel:  Hopeful. Maybe my experiences can help others not feel as puny & crazy as I thought I was when I first developed debilitating symptoms.

Thanks Carolyn!  At least I didn’t steal your answers too!

Men Explode, Women Erode

Tallulah Pacehead sez: "DRINK MILK"

Tallulah, my pacemaker, is doing her job and luckily resting on her laurels a lot (translation:  my pacemaker is only having to work 2% to 25% of the time).  I still having a bit of “heart matters” going on so this post on my favorite Heart blog: Heart Sisters caught my attention.

(P.S.  Fascinating information on Stem Cells and their impact on MEN)

If you are a woman or know a woman take a moment to listen.

“One out of every two of you reading this right now will be impacted by cardiovascular disease in your lifetime, warns cardiologist Dr. Noel Bairey-Merz, Director of the Cedars Sinai Women’s Heart Center in Los Angeles. And worse, diagnostic and treatment strategies “developed in men, by men, for men for the last 50 years” are not working so well for women.”

Sign up for My Heart Sisters Newsletter. 

http://myheartsisters.org/newsletter/