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Symptom days.

April 30, 2012

I am awake at 1:30 AM.  Why?  Because I went to sleep at 6:30 PM last night. My body thinks I’ve had enough sleep, at least for now.  Why was I asleep at 6:30 in the evening, when most people are having dinner and settling in for a relaxing evening or perhaps getting ready to go out for a movie date or a concert?  I had a “symptom day” and the combined effect of the medications needed to mask the symptoms plus the effort of dealing with the symptoms and worrying about them left me exhausted.  I couldn’t even finish watching the movie I had put on to distract myself, ironically enough the director’s cut of Aliens.  My unconscious must have been at work there choosing a movie about monsters that burst out of people’s chests.

Some women I know who suffer from coronary artery spasms or coronary microvascular disease call their condition “The Beast.”  I think that’s because it feels like a living entity that maliciously chooses random times to stop us in our tracks with the pressure, the squeezing, the pain in the chest, the fatigue after walking the dog or visiting with a friend, the fear.  You foolishly think you can do what you used to do without a thought and, Wham!.  The pain is back, the shortness of breath, the wondering if this is the time the pain won’t stop and you’ll have to call EMS to take you to the hospital again.

Being the clinical type, I tend to stay with the clinical names, but the longer I live with this the more I understand the urge to personify the angina.  I read in professional literature disturbing things like, MVD is benign and doesn’t trouble people much.  It doesn’t lead to early death.  People I know report being told it is a “nuisance condition” by their doctors.  The doctors saying this can’t be talking about the MVD I live with every day.  At Emory University in Atlanta, they actually have specialists studying this condition who recognize it for the life changing entity it is.  There is a wonderful video telling the story of a woman I have met through WomenHeart and her struggle with coronary microvascular disease.  Joan Jahnke’s experience sounds so much like mine or other women I’ve met who do not have the mild, “benign” presentation, but this life stopping experience of daily disabling symptoms.  Watching Dr. Samady describe the disease and his approach to treatment gives me hope.  Not hope of “cure”, but hope of there being doctors who take this seriously and treat our symptoms aggressively.  Doctors who care about our quality of life.

I started out intending to talk about symptom days for all kinds of people dealing with a chronic illness or condition, so let’s get back to that.  A good friend and I use this shorthand to describe days when we haven’t been able to enjoy the activities we had planned or wanted to do because of intrusive symptoms.  Rather than have to say, “Yeah, I was going to do XYZ but then my chest started hurting, I was so tired, etc.”, we can shorten it to “Today was a symptom day.”  Everyone has these days.  Healthy people have days that allergy symptoms seem to interfere with everything, for example.  But people with some chronic illnesses can’t just go to work with a drippy nose and itchy eyes and complain about the cedar like other people.

For people with chronic respiratory problems like asthma or COPD, a symptom day could mean a bit of wheezing that clears up with a couple extra puffs of albuterol, but it could also mean sitting in a chair with oxygen sucking down neb treatments and hoping you don’t have to go to the bathroom because it will make you so short of breath.  For someone with fibromyalgia, it could mean having to spend the day in bed or on the couch taking tramadol and hoping the awful aching pains and fatigue will subside enough that you can find a position that doesn’t feel like torture.  For someone with inflammatory bowel disease or irritable bowel syndrome it could mean not leaving the house for fear of having an accident if you’re too far from a bathroom.

In the last week, I have had three symptom days when my symptoms were severe enough to completely incapacitate me and leave
me wondering if this would be the day I had to go back to the hospital.  So far, I’ve been able to treat at home.  I have a new doctor who has expressed reluctance to prescribe some of the medication I need to manage my symptoms at home.  Since I am now on the Travis County Medical Assistance Program, I have few choices when it comes to picking a doctor and none at all for specialists.  I
would actually have more choices if I qualified for Medicaid, but alas my long term disability insurance provides too much income for that (but not enough to pay $1056 per month to continue my previous insurance through COBRA).  The hospital trip will likely come sooner than it would have with my previous medical team.  I almost feel like I am living in that Michael Moore film, Sicko.

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