Living Today Well

Living Today Well
As a lifelong “spoonie” I have faced the blank stare of doctors who can’t or have no idea how to help, the glare of unbelieving bosses (and “friends”) and pity in the eyes of those who truly love and care for me. I have experienced both good and bad times, like most of you.

I have fought to recover from nine major intestinal surgeries, ongoing intestinal inflammation, chronic debilitating nausea, Hashimoto’s Thyroiditis, abnormal kidney and liver function, abnormal endocrine function, cancerous fibroid tumors resulting in multiple surgeries finally necessitating a full hysterectomy… and now my new favorite – abdominal cutaneous nerve entrapment syndrome – or ACNES.

I have spent my life adapting my behaviors and activities to achieve a level of normality. And I have been quite successful at times. Other times – not so much. I have learned to be very good at hiding my symptoms and medical issues by slapping on a happy face, and some great make-up! I am sure you have too.

So I decided to start this blog to create a resource to make those days a bit more bearable. A place where I strive to find the nugget of goodness in this sea of negativity; the crumb of information or encouragement that may just help one of my fellow “spoonies.” My goal is to share the lessons I have learned and the methods that help me. Hopefully I will help you, make the most you can out of every day.

As a lifelong “spoonie” I have faced the blank stare of doctors who can’t or have no idea how to help, the glare of unbelieving bosses (and “friends”) and pity in the eyes of those who truly love and care for me. I have experienced both good and bad times, like most of you.

I have been a “spoonie” since birth, because I was born with a birth defect known as exstrophy of the bladder. Huh? – you say… Well – so did my parents!

That means that my bladder did not form properly, and grew on the outside of my body. So when I born, this defect affected not only my urinary tract, because my bladder was dysfunctional, inutile and had to be removed, but also my intestinal and reproductive systems – because – well – I just didn’t grow right!

I have fought to recover from nine major surgeries attempting to correct these problems, ongoing intestinal inflammation, chronic debilitating nausea, Hashimoto’s Thyroiditis, abnormal kidney and liver function, abnormal endocrine function, cancerous fibroid tumors resulting in multiple surgeries finally necessitating a full hysterectomy… and now my new favorite – abdominal cutaneous nerve entrapment syndrome – or ACNES.

Put simply, ACNES means that I have a trapped nerve in the musculature of my stomach wall. But really all ACNES means is PAIN! Pain so severe that I can’t walk or stand; sometimes I have to remind myself to breathe!

I have spent my life adapting my behaviors and activities to achieve a level of normality. And I have been quite successful at times. Other times – not so much. I have learned to be very good at hiding my symptoms and medical issues by slapping on a happy face, and some great make-up! I am sure you have too.

But we both know that is just putting lipstick on a pig of a day sometimes!

So I decided to start this blog to create a resource to make those days a bit more bearable. A place where I strive to find the nugget of goodness in this sea of negativity; the crumb of information or encouragement that may just help one of my fellow “spoonies.” My goal is to share the lessons I have learned and the methods that help me. Hopefully I will help you, make the most you can out of every day.