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.
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.”
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?