I got my first taste of "modern medicine" while caring for my mother in 2015. She was in the Emergency Room four times in four months. She ended up in four different emergency care centers. Each time they changed her meds without checking why she was on them, gave her new meds that disagreed with her and sent her home. She'd crash within a few weeks to a few days, and then we'd end up back in the Emergency Room.
She was later "accepted" into an assisted living facility. I hoped she'd improve with constant supervision, but she declined. She had diabetes, and no one watched as she poured hot chocolate packets into her coffee or added sugar to her lemonade. I finally started catching on to the incompetence I was dealing with when I found an empty pill cup in her room that said "Floyd." I began looking for another place for her to go.
When she broke her foot, that orthopedic surgeon put her in a cast that weighed more than she did and sent her home without a wheelchair. After a few threatening phone calls, they changed her cast, and I got a wheelchair.
One doctor told her she had to get rid of her cats because she wasn't steady on her feet and would eventually fall and kill them. My mother was in tears…thankfully she had dementia and soon forgot. He was dismissed.
Another of her doctors, an eye doctor/surgeon, was pleading with my mother to get eye surgery to save her remaining vision! She could not identify the largest E on the wall and was in Hospice. The eye surgery would require her to be face down for 6 weeks. WTF?
I read everything I could on my mother's conditions; dementia, diabetes, and myasthenia gravis. I watched my mother's behavior. I'd ask her each time, "How was she doing?" I knew she was okay if she explained what was happening around her. If she answered, "I'm fine, don't worry about me…" I knew she had a urinary tract infection brewing. The first time, she went septic before the results came back. After that, I correctly identified 16 urinary tract infections before the nurses did.
I remember the whole thing being a three-year shit show. I remember one of the nursing homes called me while I was in New Orleans doing a show. I was three margaritas into my night when they called to tell me my mother had fallen and that I needed to return to Florida and take her to the hospital. This was my third time dealing with what should have been a common sense call for an ambulance. I began yelling expletives at the nurse. "What the f*ck am I paying you $10,000 a month for? F*cking take care of it!!! What do you do with others who fall when their families aren't there? Leave them on the damn floor and sweep around them?"
While this is not intended to be a hit piece on health care providers, it IS a "Buckle up, buttercup, this could happen to you!" reminder. As I am now navigating the healthcare system with my own issues, I have chosen to take full responsibility for my health and not leave all of my decisions to my doctors. These are just a few lessons I've learned over the years…
Not every healthcare professional has YOUR best interests in mind.
Only some healthcare professionals are competent and fully understand your situation.
Your doctor may have their hands tied by your insurance company.
Your insurance company will always choose to save its bottom line before it decides to protect YOU.
Your care is sometimes left to someone who does not know how to nurture and care for YOU because they didn't grow up in a nurturing environment.
No one will ever care for you better than YOU.
Being your own patient advocate means training those closest to you on how they can best be your patient advocate if you cannot do so.
Medical breakthroughs are happening all the time. Periodically research any illnesses you may have so you are aware of the latest treatments and medications available.
Investigate all options, even those offered outside your insurance company
Being your patient advocate means researching your disease rather than blindly trusting medical professionals to figure you out.
Being your patient advocate means intelligently questioning your healthcare providers about your diagnosis and medication. If you have a doctor that does not like being asked about his/her decisions, perhaps it's time to find a new doctor.
Being your own patient advocate means having the following ready to go at a moment's notice:
a designated health care advocate
a power of attorney
a living will
a list of your healthcare providers
a list of your known health issues
a list of your updated medications and why you're taking them
a list of your allergies and sensitivities
a list of persons allowed to make your health care decisions
I keep this information in my purse, refrigerator, and work. If you are ever admitted, the hospital will ask for this information, which could expedite any critical care decisions that need to be made.
When I was diagnosed with Hashimoto's thyroiditis, I became my health care advocate. I did my research, found my medical care team, and worked with them to see life changes and medications that work well for me. I made great strides this past year and a half and feel good now. I continuously research my options and look for ways to reduce my inflammation and feel better. Being proactive in my care has made all the difference.
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