Heart disease, not cancer, is the #1 killer of women. I learned that and other invaluable information on Carolyn Thomas’ My Heart Sisters blog.
Over the years I’ve “stolen” and reposted many a wonderful post from Carolyn Thomas. Her blog, Heart Sisters, has been one of the few I’ve followed for years. I have forgotten what led me to her blog but once I read both her compelling stories and the up-to-date information on women’s health, in particular heart disease, I was a Carolyn-groupie.
Apparently Johns Hopkins was a groupie too when they asked her to write a book on Living with Heart Disease. My guess is that her down-to-earth writing coupled with up-to-date research and information appealed to Johns Hopkins as much as it did to me.
Here’s just a sample of info found on Carolyn’s blog:
“Did you know: Women generally fare far worse than men after experiencing a cardiac event? One possible reason is that it can be confusing to make sense of warning symptoms when they do hit. Women are also less likely than our male counterparts to seek immediate help at the first sign of cardiac symptoms. Instead, we end up:”
toughing them out
waiting to see if they go away
blaming them on stress, muscle soreness, indigestion or other less serious non-cardiac causes
I can’t say enough good things about Carolyn – you’ll have to read her book and her blog to see for yourself what fabulous advocacy and education Carolyn has provided since her own “widow-maker” heart attack. (Full disclosure: we are not related, I’ve never met her in person, and I don’t get a kick-back!)
Buy a copy and give the gift of life to a woman you love . . . maybe it’s even yourself
Save 20% when you use the code HTWN when you pre-order the book from Johns Hopkins
“[A Woman’s Guide to Living with Heart Disease] gives women the knowledge they need to become their own advocates in a health care system that continues to be weighted against them.”
— Foreword Reviews
“This book brings a needed focus to a leading killer of women today and is a must-read for women and their loved ones.”
— Library Journal
“If you are a woman, or love a woman, this is a book for you! Cardiovascular disease is the leading killer of women. Here is a book focused on women’s cardiovascular health. It is all here—prevention, diagnosis, and treatment. Read it for the people you love.”
— Edward K. Kasper, MD, Johns Hopkins School of Medicine, coauthor of Living Well With Heart Failure: The Misnamed, Misunderstood Condition
“This work is an important contribution to the discussion about heart attack and misdiagnosis in women. Thomas’s personal story—alongside the stories of millions of other women—provides a needed reminder of recognizing one’s symptoms, avoiding denial, and seeking medical attention. This elegant book is a unique addition to women’s health books and a necessary read for women and the people who care about them.”
— Roger S. Blumenthal, MD, Director, The Johns Hopkins Ciccarone Center for the Prevention of Heart Disease
Thank you Carolyn for pushing through your own symptoms to write a book of this magnitude.
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.
Rehashing a traumatic story/event does some of the following:
puts our system on high alert
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.”
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. ClickHERE
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.
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”.
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.
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.
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.
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 Femalestubbornness 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.
Carolyn Thomas has done it again – written a post that I am compelled to steal. She has single-handedly turned me from a law-abiding citizen to a “blogging” thief. (use a British accent to reap the full benefit on my play on words).
Cognitive-behavioral therapy has been my focus as a therapist for many, many years. I stopped trying to figure out if clients had been weaned too early as enfants when I first read brain research on obsessive compulsive disorders and how thinking literally changes the brain’s neurochemical activity thereby diminishing anxiety & depression in mood disorders. (whew! that was a long sentence).
Research continues to show that cognitive behavioral therapy along with exercise (which also activates certain neurochemical) is better or as good as medication . . . and cheaper in the long run. Read! Here’s something even cheaper than therapy and you already have the know-how and tools.
Carolyn’s article hits a home run. There’s not much I would change. I’m even brazen enough to steal her title. Carolyn has so many jewels that, without an accomplice, I can’t haul all of them over here all at once. So here’s an excerpt from her post: (Read the entire post, it’s worth it, by clicking on Carolyn’s title below)
P.S. Max would have changed the title to “The most OVER-USED word in my world”
Any form of negative rumination– for example, worrying about your health – can stimulate the release of destructive neurochemicals. Waldman and Newberg [researchers] explain:
“If we were to put you into an fMRI scanner – a huge donut-shaped magnet that can take a video of the neural changes happening in your brain – and flash the word “NO” for less than one second, you’d see a sudden release of dozens of stress-producing hormones and neurotransmitters. These chemicals immediately interrupt the normal functioning of your brain, impairing logic, reason, language processing, and communication.
“In fact, just seeing a list of negative words for a few seconds will make a highly anxious or depressed person feel worse, and the more you ruminate on them, the more you can actually damage key structures that regulate your memory, feelings, and emotions.
“You’ll disrupt your sleep, your appetite, and your ability to experience long-term happiness and satisfaction.”
“These findings are distressing for those of us who are living with a chronic diagnosis like heart disease that can involve quite a bit of day-to-day serious rumination about one’s health”
“But Ohio researchers warn that there’s apparently an intrinsic problem here: the brain barely responds to our positive words and thoughts; they found that even with simple examples (such as showing research subjects pictures of flowers vs pictures of snakes), we tend to react to the scary snakes but barely register a reaction to those nice flowers.** That’s why, they suggest, we need to bulk up on those positives to outweigh the negatives.”
“Finally, Waldman and Newberg remind us of the findings of Dr. Barbara Fredrickson, (one of the founders of the field of Positive Psychology) and others whose work suggests that we need to generate 3-5 positive thoughts and feelings for each expression of negativity. They add:
“Our advice: choose your words wisely and speak them slowly. This will allow you to interrupt the brain’s propensity to be negative, and as recent research has shown, the mere repetition of positive words will turn on specific genes that lower your physical and emotional stress.”’
“When other researchers reporting in the New England Journal of Medicine looked at more than 10,000 patients (48% women) who had gone to their hospital Emergency Departments with chest pain or other heart attack symptoms, they found that women under the age of 55 are SEVEN TIMES more likely to be misdiagnosed in mid-heart attack than their male counterparts are.”
“And it gets worse! In 2005, the American Heart Association surveyed physicians in the U.S. to see how many were aware that more women than men die of heart disease each year (a statistic that’s been true since they started keeping track in 1984).
Only 8% of family doctors knew this fact, and (much worse!!) only 17% of CARDIOLOGISTS were aware of it. CARDIOLOGISTS! This is their business. This is all they do!! Shocking, really!”
Do check out Carolyn’s blog. She does an amazing job keeping up with the latest news and research and information. Here’s a sample of a funny post that may not be so funny:
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:”
My choice: A gossamer gown
or a horse hair robe
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!
My resiliency has taken a nose dive since going off my miracle Mirapex. Since I feel exhausted all the time rather than bounce back from any exertion I tend to splat. So I found Carolyn Thomas’ post on resiliency really interesting. Out of curiosity I took the resiliency test, that’s posted at the end, twice: The first time how I’m feeling currently and then how I would have responded PRE-fibromyalgia/heart stuff.
I was pleasantly and unexpectedly surprised. I’m a bit MORE resilient POST fibromyalgia/heart stuff than PRE. When I thought about it, it began to make sense.
Here’s an excerpt from Carolyn Thomas’ post (Read her whole post it’s very good)
“Psychologist Dr. Al Siebert, author of The Survivor Personality: Why Some People Are Stronger, Smarter, and More Skillful at Handling Life’s Difficulties, examines some interesting differences between survivors.”
“Every transformational journey is unique, he reminds us, but some survivors remain emotionally wounded for life. They relive and re-experience distressing moments again and again. On the other hand, some survivors recover fairly well with the help of an accommodating family and friends, or appropriate professional help.”
“Some, however, do more than simply recover, and survivors in this third group have two things in common, according to Dr. Siebert:
They integrate the traumatic experience into their identity and make the experience a defining part of their life story.
They talk or write about the trauma in a way that is helpful to others.
Rate yourself from 1 to 5 on the following: (1 = very little, 5 = very strong)
1 2 3 4 5
In a crisis or chaotic situation, I calm myself and focus on taking useful actions.
I’m usually optimistic. I see difficulties as temporary and expect to overcome them.
I can tolerate high levels of ambiguity and uncertainty about situations.
I adapt quickly to new developments. I’m good at bouncing back from difficulties.
I’m playful. I find the humor in rough situations, and can laugh at myself.
I’m able to recover emotionally from losses and setbacks. I have friends I can talk with. I can express my feelings to others and ask for help. Feelings of anger, loss and discouragement don’t last long.
I feel self-confident, appreciate myself. and have a healthy concept of who I am.
I’m curious. I ask questions. I want to know how things work. I like to try new ways of doing things.
I learn valuable lessons from my experiences and from the experiences of others.
I’m good at solving problems. I can use analytical logic, be creative, or use practical common sense.
I’m good at making things work well. I’m often asked to lead groups and projects.
I’m very flexible. I feel comfortable with my paradoxical complexity. I’m optimistic and pessimistic, trusting and cautious, unselfish and selfish, and so forth.
I’m always myself, but I’ve noticed that I’m different in different situations.
I prefer to work without a written job description. I’m more effective when I’m free to do what I think is best in each situation.
I “read” people well and trust my intuition.
I’m a good listener. I have good empathy skills.
I’m non-judgmental about others and adapt to people’s different personality styles.
I’m very durable. I hold up well during tough times. I have an independent spirit underneath my cooperative way of working with others.
I’ve been made stronger and better by difficult experiences.
I’ve converted misfortune into good luck and found benefits in bad experiences.
Scoring: 80 or higher very resilient! 65-80 better than most 50-65 slow, but adequate 40-50 you’re struggling 40 or under seek help!
I returned to the cardiologist and had them turn off my pacing assist to hopefully, once and for all, get Miss Judith to stop dramatically clutching her chest when she exerts herself in any mild to moderate way of which she holds the belief she’s being very subtle and heroic and doesn’t think I don’t notice all the while hoping I notice, while I pretend I don’t notice because I don’t want to reinforce her melodramatic proclivities.
Miss Judith probably doesn’t even know I had myself “adjusted” because all she’s been doing is sitting around.
Now, to much more important things that everyone should know and to that end I want you to watch this 3-minute FUNNY film called “Just a Little Heart Attack” with Elizabeth Banks from the American Heart Association about the symptoms of heart attack in young women. I found it funny but then again I don’t get out much,
The video and the excerpt that follows comes from an excellent and very informative blog Heart Sisters. Did I say this is an excerpt? You must read the entire post and then go on to read the entire blog as it is not just for heart disabilities but everyone with a life altering condition can benefit from the information so go read the blog NOW!
Very graciously yours,
Miss Tallulah PaceHead
P.S. After you watch the film read what Carolyn Thomas has to say.
” I have to say that the breast cancer folks have done a fabulous job in raising awareness of their cause. So fabulous, in fact, that they have erroneously convinced women that breast cancer is our biggest health threat.”
It is not, of course. This year, heart disease will kill six times more women than breast cancer will. In fact, heart disease kills more women than all forms of cancer combined.”
“. . . Young women can have heart disease, too. Yet when researchers reporting in the New England Journal of Medicine looked at more than 10,000 patients (48% women) who had gone to their hospital Emergency Departments with chest pain or other heart attack symptoms, they found that women under the age of 55 are SEVEN TIMES more likely to be misdiagnosed in mid-heart attack than their male counterparts are. A commonly heard pronouncement delivered by too many Emergency physicians to too many female heart patients is: