She currently facilitates the WomenHeart of Lenox Hill support group.
For the longest time, Ive had a small plaque in a green rustic wooden frame on my desk.
I know my sister gave it to me, but I have no idea when.
Courtesy of Agnes Czuchlewski
It was that long ago.
Its a picture of a lighthouse on a rocky outcropping, surrounded by water.
The caption of the picture reads, Life is a journey, not a destination.
I hadnt had bloodwork in about seven years, figuring Id know if anything was wrong.
Add to this my mistrust of doctors in general.
Therefore, when I was diagnosed withtype 2 diabetes, it was a surprise but it wasnt surprising.
What else could give me that result?
Then came the massive ankle swelling that no one could explain.
As I found out, my initial blood sugar test was over 400.
Panic set in: How do I fix this?
What do I do first?
Where do I start?
This wasnt a sore throat that would go away in a few days with proper care.
I had entered the sphere of chronic disease, and frankly, I was scared and confused.
But I was determined to find out what I needed to do differently and why.
I knew I would need to make changes to deal with this risk before long.
But right then, I needed to address my new and immediate diagnosis.
At least I was starting to understand what I needed to know.
When I visited her, I began to understand why.
There was no conversation, no instructions, and no empathy.
I just got a point-blank question: Do you want pills or a shot?
Patient advocacy wasnt even a phrase at this point, but I realized that I needed more than this.
This was the first time I ever challenged a doctor, and it was a revelation.
Patient advocacy wasnt even a phrase at this point, but I realized that I needed more than this.
I responded, I want training.
To my surprise, I was told, No one has ever asked for that before.
I was given information for a two-day training session to learn about the care and management of diabetes.
It was wonderful but overwhelming.
Sort of like a disease-based boot camp.
I learned that diabetes is not a one-size-fits-all issue.
I began to define the outcomes I wanted and what the long haul of my life would look like.
And I went into action.
What I realized I wanted was a new doctor.
Someone who would work with me to take control and explain why some things worked while others didnt.
My body and my numbers would let me know when I got to that point.
I learned that diabetes is not a one-size-fits-all issue.
I was learning not only what is in my control but why I should control it.
Being told to take this was unacceptable.
I found out that if I couldnt discuss questions with my doctor, I needed to move on.
While extremely enjoyable, this conversation was not moving me to where I needed to be.
On December 28, 2015, I had a heart attack.
I had a stent placed the next day and was home for New Years Eve.
Physically, it might have been simple, but the mental impact was significant.
I was back to asking the same old questions: What now?
What did I do wrong?
But no simple or comforting answers were appearing.
I started to obsess over whether it was going to happen again.
If it did, would it be more serious?
Ultimately, would I live?
I was feeling new things happening in my body, but no one was explaining things to me.
It gave me permission to stop asking for the answers to the unknowable.
What would happen would happen, and as long as I did what was necessary health-wise.
The meetings were enlightening.
I learned so much and was able to share my knowledge and fears in a supportive atmosphere.
What was most incredible was the connection that we felt to one another, our heart sisters.
Shes terrific, kind, and a great listener who gives wonderful advice.
She has really helped get my A1C under control.
I admit I can be a bit of a perfectionist.
Or perhaps it is more of a desire for approval for a task done correctly.
My life became a list of should and shouldnt.
Cut yourself some slack.
It is very easy to berate yourself and to focus on guilt rather than progress.
The lesson learned was to cut yourself some slack.
It is very easy to berate yourself and to focus on guilt rather than progress.
I needed to establish an abuse-free zone for myself, in my life, relationships, and medical interactions.
If you dont do it right today, there is tomorrow to hit it one more time.
There have been so many changes that its impossible to count.
There is so much it’s possible for you to learn on the internet about health.
Just be sure the knowledge gained is factual.
And dont drive yourself crazy with what you find.
Ive come up with an acronym to remember how to take in and assess new information:LATE.
I would counter by pointing out that it may be personal, but it isnt unique.
Ive spoken to groups of cardiologists about listening to their patients and about the power of patient advocacy.
Ive spoken to various media outlets about the impact and symptoms of heart disease, specifically in women.
The message is getting out there, but we still have a long way to go.
This is why I continue to tell my story.
Or do I do what I was meant to do, shine my light to help others?
