I don’t like being the patient. When I am in the doctor’s office for Robert
or Richard, I ask questions, I persist in finding answers, I think of myself as
a collaborating with the doctors to figure out the best course of action to
solve a problem.
When I am at the doctor for myself, I turn into a bag of
marshmallows. Not even the mini ones –
one big bag of giant marshmallows. I can barely utter three words that make
sense. Or that are actual words.
I have no idea why this happens but after confessing this to
some caregiver friends, many said the same thing happens to them. We can be tough as nails for our caree but
when it comes to caring for ourselves – we’re scared little children.
Today I was the patient and I was determined to be as much
of an advocate for myself as I am for Robert or Richard. I put on my advocate hat and pretended I was
caring for someone else.
My appointment was for an echocardiogram stress test since I
apparently flunked the stress test I had just before Christmas. The whole reason for having the stress test
in the first place was because I had been experiencing intermittent chest pains
and light-headedness.
Since August.
Then September got busy
and busier
and October was filled with respite preparations, November took us on a trip
and so the stress test got scheduled for December 16.
December 15 Robert was admitted to the hospital for
pneumonia so I rescheduled my appointment.
I finally went on a Sunday, three days before Christmas.
I couldn’t believe my luck in getting a Sunday appointment
since we weren’t only busy with the holidays but work is extremely busy at year
end and I didn’t want to miss any more work.
I didn’t particularly want to miss any shopping or wrapping time either but
I had to get this done.
Once at the appointment, I made it clear that the stress
test was stressing me out. I wanted them
to know that if my blood pressure was high that I blamed the test. Plus, I don’t really have time for this sort
of thing but I wanted to be sure the chest pains and light-headedness (which
still happened on occasion) wasn’t anything serious.
The test was easy enough (although I found out I am allergic
to latex – good to know). While running on the treadmill I had an
inclination there might be a problem when the technician stopped the test
sooner than he told me we would stop.
Then he told me to wait in the waiting room while he
consulted a cardiologist.
The only question I could mutter was “do you always consult
with the cardiologist?” He answered that he did most of the time. Then told me to go to the waiting room.
Did I ask any more questions? Noooooooo.
That would have been too easy.
Was I freaking out? Just a
little.
I dutifully went to the waiting room and sat until the nurse came out to tell
me that I needed to contact my doctor as soon as possible the next day and to
schedule a follow up test.
He rattled off two types of tests, neither of which I
remembered nor wrote down. (You can bet
I would have had my notepad in hand writing down these tests if I was with
Richard or Robert at an appointment.
Heck, I didn’t even have my notepad with me!)
I managed to state there must be something wrong but the
nurse just reiterated to contact my doctor the next day and said the
cardiologist would be talking with my doctor.
He said the follow up test was “just to be safe.”
Oh, okay.
Then I left.
Of course, as soon as I got into the car, I had all kinds of
questions. What test is it? What are
they looking for? What did they find?
Was my blood pressure too high?
And I thought I was stressed at the beginning of the
appointment!
After emailing my doctor (and getting a message that he was
on vacation for the next two weeks), I talked with a nurse the next day. I grilled her about the results of the stress
test but all she could tell me was that there was an abnormal reading that
could indicate a blockage.
Oh, is that all. Ack!
Now, keep in mind, I come from a long line of over-reactors. I don’t panic and I can usually keep a very
cool head but I have an imagination that you wouldn’t believe.
Let’s just say I researched the procedure for inserting a
heart stent.
More than two weeks later I had my follow up test which, as
it turns out, is an echocardiogram stress test. I did my best not to stress out
about the test but it wasn’t easy. I sat
in the waiting room listening to Adele, hoping her music would lower my blood
pressure. I read work emails and quickly
realized that was not the best plan for reducing my blood pressure.
Before the appointment, I promised myself I would put on my
advocate hat and ask questions. I brought my notepad with me. I had a speech
prepared for the nurse that this was my health and I wanted answers today so if
she can’t tell me something she will have to get a doctor.
It was a good speech but I didn’t have to use it.
The technician was a wonderful young woman who told me her
grandfather’s inspiring life story when I asked about a tattoo she had on her
wrist. She was kind enough to use paper
electrodes when I told her my suspicion about being allergic to latex. She explained the test to me and even retook
my baseline blood pressure when I told her that it was so high because I was
stressed about the test. (The second
reading was still high but better.)
The nurse came in and also thoroughly explained what was involved
in the test. She was tough, though – she
said I couldn’t stop the exercise bike even if my legs were hurting and I was
out of breath. I asked about my first “failed”
stress test and she assured me that this test would reveal blockage if there
was any. She said many women had false
positives on the standard treadmill stress test which was an immediate
relief. I was able to see the pulse rate
and blood pressure readings during the test which somehow was reassuring. The nurse and technician continued to be
supportive and answered all of my questions without hesitation.
Once the test was over, the nurse told me it was clear there
wasn’t any blockage. She said my blood
pressure was high under stress and to follow up with my doctor about that but I
felt so much better. I explained my
caregiving situation and she nodded knowingly and said to manage my stress with
meditation or other methods.
It was not easy to get into advocate mode for my own
appointment but, for me, I have to pretend I am there for one of my
carees. I have to prepare questions
ahead of time, bring along my notepad and trust that I can talk intelligently
about my own health with the healthcare professionals.
I am not only part of a healthcare team that takes care of
Robert and Richard but also me. It’s not easy to remember but it’s important
that I do.
My health is important too.
What is difficult for you about advocating for your own health?
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