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April 15, 2012

Fear has become more prominent in my life since that night in December 2010 when I had a heart attack.  Not fear of dying, though an acute MI puts you in mind of that for sure.  My fears have more to do with how I continue to live and what the future holds.

All of us living with chronic conditions have concerns of one sort or another.  Sometimes we do worry about dying, but most people worry a lot more about living.  Will we suffer?  Will we get the help we need?  Do doctors believe us and understand what we are telling them about our quality of life?  Will I be able to support my family?  What about health insurance?  How do I keep paying for medication?

For me, a concern has been for my various symptoms, particularly fatigue and chest pain.  The fatigue causes me to have to rest after simple tasks like ironing a few fabric scraps or cooking some vegetables for lunch.  When I do something fun, I worry about how it will affect me later.  Will I end up having to spend half of tomorrow in bed because I over did it today?  Each day I prioritize my activities and only make firm plans for two things.  Maybe only one if it’s a bad day or I have something particularly tiring to get done.  My chest pain is unpredictable and becomes worse if I am tired.  One day I can walk a couple miles at a moderate pace, another I am taking nitroglycerin for chest pain before even getting out of the building.  These ups and downs make it harder to cope with the limitations I have and sometimes make me fearful when going out.

I think about the hospital a lot.  A year ago I didn’t think about going to the hospital in terms of when I go again.  I thought of hospitalization as a rare event.  After the third hospitalization in 6 months, that thinking changed.  After a couple more hospitalizations, I don’t think about if I go again, but when.  I keep things ready like my complete medication list in my wallet.  Last time I had to have EMS pick me up I had lost the list and I was short of breath and my husband can’t remember all my meds.  We ended up with the plastic bag full of pill bottles getting hauled along with us.  I carry a copy of a recent EKG in my wallet also, at the suggestion of my current cardiologist.  That way I can show ER docs my baseline.  When my angina ramps up, even as I treat it with my usual medications I think about whether I need to consider going in.  My husband is easing up.  He used to ask every time I touched my chest if I needed to see a doctor.

That brings me to another set of fears.  I worry about how my husband is coping.  He has his own health problems and sometimes the stress of dealing with my illness worsens his symptoms.  I also do not have the stamina to manage his health care like I used to and I worry he will let things slip.

Financial worries are a big deal in my life now.  I have not worked since October due to the instability of my condition.  I’ve used up most of my financial resources and am waiting for my long term disability insurance to make a determination on my claim.  Since I have a relatively poorly understood condition (coronary endothelial dysfunction), the usual measures of how I “should” be doing make me look healthier than I am.  I don’t know what I will do if they deny benefits.

My employer subsidized health insurance just ended.  With no income, it’ll be mighty hard to make payments on the COBRA.  Texas is not one of the most generous states when it comes to health care assistance.  Meanwhile because of a medication shortage, I was unable to fill one of my prescriptions when I submitted it in March.  Now that the med is available, the insurance is gone and I won’t be able to pay for it.

So, now that I think I found a good cardiologist who believes me when I tell him my symptoms and seems to have ideas for managing them, will I be able to continue seeing him?  It’s just too much to think about sometimes.

Despite all these worries and fears, I enjoy my life.  I am optimistic that in time I will find solutions to many of these problems.  I write about them, not to whine and complain, but to speak up for myself and the thousands of others like me living with big health problems.  I want people to understand what it is like living with these fears.  I want others who have these fears to know they are not alone.


One Comment leave one →
  1. frykwoman permalink
    April 15, 2012 9:12 am

    So much of what you say resonates in me. Fear has been the motivator, immobilizer and center of my life for much of the four years since my heart attack. Mostly fear of the unknown, when the known is so awful. “Will we loose our house?” “How long can we make this $30 last? “Can I split doses of my heart meds to save money for food?” All these questions and many more have drifted into and stuck in my mind and heart during the struggle to find solid ground.

    Perhaps the worst of my fear has come as a result of a number of episodes and event in the hospital. I nearly died a couple of times, and was grossly mistreated during those events. Further, I had a series of doctors that didn’t believe that it was my heart that was causing my symptoms. About two years into my illness, my psychotherapist added another diagnosis– Post Traumatic Stress Disorder (PTSD). I never really know what will trigger this disorder in me, when it will show up, or how it will show up. I have periods of severe nightmares that awaken me into a full blown angina attack, and react to loud noises with deep anxiety and a sort of fight or flight reflex. Sometimes the reaction arrives with a brand new trigger, something that had never bothered me before.

    My salvation has come in making deep friendships with other heart women, as we call ourselves, and with other folks who deal with chronic illness. I started attending a twelve step group for overeating, and have gotten some control and recovery from food addiction that is already helping to stabilize my heart disease. Just talking with others who are struggling, recovering, and living in the now has been hugely helpful to my own recovery.

    I would say, also, that my fears of death are minimal, but when they occur, they are mostly about my loss of control that death represents. The eventuality of death, near or far from now, evokes feelings of loss of control in me – fear. Fear of loosing my most basic integrity,
    my family, my way of life. The mystery of death is actually an area of excitement for me, not without a little fear. But really, I worry about how my family will adjust to my absence. I’m writing my son and husband an ongoing letter to open upon my death. In it, I ask them to remember me, my values, my joys, my love. And in it, I promise to carry my love for them with me, no matter what happens on the other side of the veil of death. This act has made me much more secure feeling, less fearful, and has brought me closer to my loves.

    Thank you for bringing up this most important area of life with chronic illness. Talking about it is one of the most liberating things I can do.

    BIG love to us all!

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