Venus Envy

Ah, vanity thy name is woman (and man). When we are coping with chronic illness we worry about how we look. Yes, it's true. When I was being treated with aggressive chemotherapy for Stage 4B cancer and ended up looking like a bald-headed ogre, I vowed that I wasn't going to die looking like that. Maybe that was one of the reasons I survived - stubborn as I was.

I also had Cushings Syndrome from the vast amount of steroids used to save my life. Pumped up to twice my natural size (ouch, that hurt) with a humped back, I was aghast when I looked in the mirror.

Even today, dealing with Lupus, fibromyalgia and the never-ending affects of chemotherapy, I want to look my best but my clothes must not hurt. They can't be binding or scratchy. No wool sweaters for me because just like the liver or heart our skin is an organ and it gets inflamed just like other parts of my body. Sometimes my bed sheets hurt!

And then there's the worsening eyesight due to medications or my illnesses and never-ending adjustments to my eyeglass prescription. The lenses are quite thick now and will soon get even thicker. Add worry lines due to how I must care for myself each day and, damn, I sure ain't Venus de Milo, the historical statue that represents beauty in many cultures.

According to the statue's story, however, scholars are not sure if beauty was the sculptor's intent and the fact that she was discovered in 100 BC minus her arms shows frailty and flaw - just like us!

I don't like hiding myself away on days I feel awful; when the dark circles under my eyes or my unkempt hair keep me away from others. There was a time when I wore the messy, sick me proudly because, regardless of how I looked, I was alive. But now I am less sure since the years have passed and I am simply aging.

There are virtually no pictures of me when I was at my worst - when, in my most swollen state, my sister said I looked like the Elephant Man and my brother deemed me a Hawaian Princess. (Most of my swelling was from the chest up so my head and shoulders were large.) I still hate pictures of myself because I see the saggy skin on my neck where the tracheotomy was performed, I see the scars and imperfections and I think most of my chronically ill friends do, too.

But our beauty is not dependent on our outward appearances. Thanks to the internet, I regularly communicate with others with crippling and disfiguring auto-immune disorders or disease. And they are quite extraordinarily beautiful, these mostly faceless friends of mine. Their determination and grit during hard times is gorgeous. And if life is like a box of chocolates, as Forrest Gump famously said, we never know what we're going to get from one day to the next.

Venus de Milo, The Louvre, Paris, France

Flare thee well

It's over. For now. The Lupus flare that had me in its grips for the past two weeks or so seems to have abated. What worked? I don't know.

It's been a couple of months that I've started implementing an integrative and functional medicine regimen including a complete change of diet and the addition of many supplements - slowly. Yet, I still had to turn to corticosteroids to pull me out of the depths of the flare; lessen the intense pain and fatigue and clear the fog from my brain. A failure? I don't think so. It's a combined process.

According to The Mayo Clinic, corticosteroids "mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body's usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions..."

"Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues."

There's no question that corticosteroids used for Lupus and fibromyalgia and the treatment of certain cancers and other illnesses works but they are also UNhealthy for a variety of reasons, including increased risk of osteoporosis, glaucoma, high blood pressure and Cushing's Syndrome if taken for a long period of time and in high doses by mouth and/or intravenously.

I hate them. So does my integrative/functional medical doctor Dalal Akoury, M.D. and she was distressed that it was my chosen course of action but I needed relief - fast - and I knew it would work. I simply haven't been under her care long enough to allow all her prescribed recommendations to work. And because I am in New York and she is in South Carolina, I must see her only on my visits there. I go next week.

But, I'm trying. I'm really trying. And I am seeing improvements. The flare was obviously caused by over-exertion and stress due to moving residences and the launch of my book. Now that I'm out of it, I'm continuing to add in Dr. Akoury's supplements one by one, ensuring that I have no reaction to the first before I start the second, third, fourth or fifth. I can't wait to see her again and discuss my progress.

Immune system disorders. My goodness, there are thousands of them that put our bodies in battle with ourselves. Stay tuned for more health updates! I know they are fascinating (tongue planted firmly in cheek).