Welcome to Day 1 of WeGo Health’s 2016 November Health Activist Writer’s Month Challenge #HAWMC! To search or read my #HAWMC blog entries from last year, click here.
To kick-off this year’s challenge, let’s play a game of John Quiñones-style, “What would you do?”
What would you do if you found out a family member had been seriously and preventably injured by a medical device or procedure that you found out was never tested on humans before coming to market?
What would you do if you attended doctor’s appointments and saw firsthand that your sick and injured family member was being abused and lied to by healthcare professionals?
What would you do if you learned that institutions you trusted, like the FDA, pharmaceutical companies, and even the American courts and justice system were not at all the protective entities you thought them to be?
What would you do if you learned there was something positive you could do to influence a very negative situation?
The answers to these questions (and so many more) are what compelled me to begin writing about my experience in trying my best to help my very ill loved one navigate, what I now know, is a very broken healthcare system that has come to put profits before patients and self-interest before the hippocratic oath, often leaving patients sicker than ever.
Not surprisingly, the answers I found immediately gave way to more questions. From 2011 to 2014, I became laser focused. How could I help my mom? How could we find out what had gone so horribly wrong?
In 2013, I began writing real-time about my family’s experiences as I pursued answers to the question, “How could my mother be preventably harmed by what doctors describe as a gold-standard treatment for a common women’s health issue?” The culprit is called transvaginal mesh. It’s a medical device made of polypropylene plastic, implanted most often via a patented medical procedure using the da Vinci® Surgical System. The procedure is an outpatient surgery and usually takes under an hour to perform. The device and accompanying procedure were aggressively marketed to doctors and patients by medical device manufacturers as a simple, minimally-invasive procedure to treat stress urinary incontinence (SUI) and/or pelvic organ prolapse (POP) in women. A similar medical device is also used to repair hernias in men and women.
Click here to listen to a radio interview I did in 2013 that describes the suffering caused by the ill-fated transvaginal mesh device and procedure.
After roughly three-years of nonstop learning, being a caregiver for my injured mother, advocating for her and others, I had become a bonafide patient advocate. I was hungry to learn as much as I could, as fast as possible. I longed to comfort others who were experiencing the same devastation in their bodies, in their lives, in their families. And then . . . in an ironic twist, me – the patient advocate, became me – the patient.
Yep, in mid 2014, I started to experience brief episodes of intense fatigue. I would be carrying on with my work and writing, and then BAM! I would get knocked down, seemingly out of the blue. An all-consuming fatigue would come over my whole body and would render me completely unable to move. As quickly as these episodes came on, they seemed to recede. I would rest for a few days, and the feeling would mostly subside, and I’d go back to my very stressful and busy life. The only other symptom I had was extremely low blood sugar. No matter what I ate, I couldn’t get the glucose monitor to register more than 50 – 70, not a good number. In the summer of 2014, during a conference in Berkeley, CA, I had the most severe episode yet. I had to leave the conference and fly home. I was devastated. The next many months were filled with doctor’s visits, and one scary trip to the ER, when my blood sugar plunged so low that I began to lose consciousness. I was told all my bloodwork was “normal.” I wasn’t overweight. I couldn’t describe any other symptom besides fatigue and low blood sugar. I was under a tremendous amount of stress, so I just thought I needed to slow down, take time for myself. The episodes became more frequent, and in a matter of months, I was bedridden. Doctors didn’t seem to have any answers. I became so sick that my husband took a leave of absence from his job, and we focused on getting answers.
It wasn’t until February of 2015 that I was diagnosed with the autoimmune disease, Hashimoto’s Thyroiditis. Here is an excerpt from the blog I wrote after diagnosis:
“The only way I could describe the level of fatigue was to say, ‘Every single cell in my body aches and is tired, from my eyelids to the muscles in my upper arms, to my legs to my toenails. I feel like I have tiny little anvils hanging from every single cell.’ If I could find a doctor who would even listen, ‘tiny little anvils’ doesn’t have a diagnosis or billing code. I was visiting endocrinologist after endocrinologist who DID NOT LISTEN and sent me to have blood work done for diabetes. I didn’t have high sugar, I had dangerously LOW blood sugar, consistent and chronic hypoglycemia. To see a three-digit number on a glucometer was a RARE occurrence for me. Lack of blood sugar regulation was the only clue I had at this point, and hypoglycemia itself runs in my family. As expected, all testing for diabetes came back saying I not only did not have diabetes, but I had a DECREASED likelihood for diabetes. I would ask them to check my thyroid and do a full thyroid panel and they would just tell me, “I already checked your TSH. You are fine.” They would not honor my requests to do a full thyroid panel. They simply would not do it. Month after month, my health declined and doctors would not listen to my symptoms or me. When I began to have lab results that I could present and take with me to the next doctor, hoping he/she would listen, my hope renewed. But it was a fleeting hope, because I heard everything from “the labs are wrong” (WHAT?!) to, “Let’s check you again for diabetes because in rare cases, pre-diabetics can by hypoglycemic.” (WHAT AGAIN?!) Why are we looking for rare causes at the beginning of the diagnostic process?
I felt like I was on the same merry-go-round of horror that I described when I wrote this article for Mesh News Desk in 2013 about seeking out help with all of the health problems my mother was suffering, which we now know are caused by the mesh implant.”
So I was left with only one question: NOW WHAT?!
I thought thyroid-replacement therapy would be the silver bullet and that, quickly, I’d be back to my busy life. I could not have been more wrong. Handfuls of vitamin supplements, going completely gluten-free, and lots of rest, and two years later, and I’m still struggling to reclaim my health. The process has been painfully slow, much slower than I had hoped.
So now why do I write? Why do I share my health condition so publically? The answer is simple. Because this is where I am. This is who I am. Often times, we troll Facebook, and looking at the smiling faces of all our friends, we assume every person’s life is perfect . . . except ours. That’s a myth. Everyone struggles with something. Hashimoto’s is my struggle. In my desire to know the truth about the mesh that so profoundly injured my mother and my family, I learned a valuable lesson about myself. As a health activist, adherence to the truth in whatever form it comes is paramount. This is my truth, and it hit me square between the eyes.