. . . and the Steady Beat Goes on, Irregularly

Heart finger painting
stage 1

Spent 5 hours in the ER.  Chest pain, light headedness, fatigue, muddled thinking.  I knew I wasn’t having a heart attack since these symptoms have been going on for sometime.  In the past, by the time they got me on a halter-monitor my symptoms were gone.  This time I was told to go to the ER where they had the equipment to “catch” what was happening.  

Yes!  I’ve got rhythm

steadily  ir reg ula r

                                      JaZzy marching band

Heart of the matter:
Help me be independent
of unhealthy health

 

Drove myself to the ER (remember, I knew I wasn’t having a heart attack). Said I was having chest pain so I got preferred parking and was triaged in immediately.  If you are bleeding profusely (depending on what part of the body is bleeding) or have chest pains you go to the head of the line.  

OF COURSE the 2-second EKG  was fine and I was sent to the waiting room till they had a “bed” for me.  

Heart finger painting
Stage 2

Three hours later, having read every magazine in the waiting room (except for Popular Mechanics which my heart wasn’t into), I was disrobed, had blood drawn, chest x-rayed and  hooked up to a heart monitor with a comfy warm blanket around my legs.

Seems the culprit is bradycardia – my heart rate goes too low with any kind of exertion (including laughing exuberantly) and not enough blood is getting to my organs including my brain, which it turns out is an organ, (thus the muddled thinking –  a relief to know it’s not old age just heart disease).

Now I can add bradycardia to the PVC’s, atrial fibrillation, AV node block, high blood pressure, crabbiness and gray hair.

What to do?  I’ll see the Doctor November 8th.  

He’s not triaging me in first cuz my heart is still beating, albeit irregularly.

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!

The Heat’s On!

Solar Flare

Although Southern California has been having incredibly beautiful weather I’m aware that parts of the world are experiencing incredible heat.

One of my favorite electrophysiologists (cardiologist who specialized in electrical) is John Mandrola, MD.  I have internet appointments with his blog.  He is down to earth, a good writer and has good information.  He also is an avid cyclist which has given me a glimpse into the obsessive world of cycling which I shall never physically experience!

I’ve excerpted his information on how to deal with heat as there are several points he makes that I wasn’t aware of.

Although on this post he’s talking about strenuous exercise it applies to a lot of people: Those with medical conditions; Seniors; Children who play hard outside etc.

So for those of you sweltering in the heat right now take a look at what the doctor writes:

“. . . mild dehydration and heat exposure can play havoc with susceptible patients. Now I’m talking to middle-agers with (or without) AF. [atrial fibrillation] The stressful effects of heat-illness–electrolyte depletion and high adrenaline levels–can act as pokers of the nests of cells that drive or initiate AF.  You don’t want to poke these cells. mild dehydration and heat exposure can play havoc with susceptible patients.”

  • “Hydrate immediately upon awakening. A number of years ago, I had to drink 30 ounces of water in the early morning before a kidney ultrasound. The sensations were amazing. I bopped around that entire day. Starting the day on ‘full’ can make a huge difference in dealing with the heat.
  • Drink an entire bottle of water BEFORE [exercise] the run or ride. Even when it’s not hot, exercising in a fully hydrated state improves performance. A side effect: the need to negotiate an early nature break.
  • Limit caffeine intake on hot days. I harbor little doubt that caffeine improves performance–in certain individuals–during short bursts of exercise done in moderate weather. I cannot imagine starting a cyclocross race without drinking a stiff Americano. But on hot days, the diuretic effect of caffeine wreaks havoc with heat regulation and electrolyte depletion. I don’t have studies; I just know this.
  • Talk to yourself during [exercise] a hot ride/run. Keep telling yourself to drink fluids. For guys like me, with imaginary friends, talking to yourself comes naturally. You may need to practice.
  • Colored water can help on long rides/runs [exercise] on hot days. I’m partial to orange and purple sport’s drinks. Of course, the best color drink needs to be individualized. Don’t ask me which proprietary formula best replenishes muscles. Just pick a good color. I say this with caution: The fizzy carmel-colored stuff in a red can also works for me.
  • Avoid Non-Steroidal Anti-Inflammatory Drugs (NSAIDs). Under normal circumstances, regular use of NSAIDs is risky. One of the greatest risks of these drugs is kidney failure–the dialysis kind. Taking NSAIDs in a volume-depleted state increases the risk of this catastrophe. Let me repeat: Do not take NSAIDs while dehydrated.
  • Don’t push through sickness. When fighting a viral infection—I say viral, because no one exercises through serious bacterial infections—you need to let your heart and body rest. By definition, infection means you are inflamed. Don’t risk pouring in more inflammation. Never add inflammation. That’s a severe health rule!
  • Exercise in the morning. The advantage here is that you may learn to go bed early.
  • Be alert for signs of heat-illness in yourself or your buddies. It’s pretty obvious. Being cold on a hot day is a really bad sign. Babbling is a less specific indicator.”
To read the entire post click here:  Dr John M.