My Story: Pamela Hope Cincotta

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What were the steps leading up to your diagnosis?

Looking back to elementary school, I was sickly, yet active and strong. I felt better when we moved from New York to Florida, until the migraines began. I have had migraines since 1979, when I was 19. All causes were eliminated, all prophylactic regimens failed me, and I took no pain medicines either – I just had to get through the pain as nothing worked.

Jump forward to 2001 (and many seemingly unrelated medical issues later), and a few sores appeared on my upper back. All skin diseases were ruled out while the sores took over my back, chest and arms. In 2002 doctors were finding many things wrong with me, like chronic myofacial pain syndrome, fibromyalgia, osteoporosis (I was now 43), and depression.

I had abnormal bone growths along with extra bones, so all these specialized fields of medicine could only rule things out, and eventually my doctors concurred that my medical history fit lupus SLE, with a question mark for discoid lupus due to the sores that have, at this point, destroyed my skin and teeth. I have been told the migraines from my youth were most likely lupus migraines, but I haven't read about one form of lupus that damages the skin and skeleton and causes migraines.

I do know that they found and removed a bone growing in my lower back (L5/S1) when I was 51, which was believed to have been growing for approximately four decades. Mystery solved on why I could never do a backbend in gymnastics!

What accomplishment are you proud of?

I’m proud of an endless list of accomplishments before lupus, including my positive attitude, generous nature, and gift of laughter. After lupus, I add to that list finally loving myself and being my own best friend, both of which wouldn’t have been achieved had this not happened to me!

What lifestyle changes have you needed to make?

My Story: Pamela Hope Cincotta I was forced to be labeled permanently disabled, ending 28 years of working at great jobs where I excelled and had a purpose in my life! I don't have children and have been divorced since 1985, and I'm pretty much housebound now. The complications keep adding new conditions to my list of disabilities. In the past four years they have taken over and it's so hard to do anything. But I keep a joke at the ready and don't complain, because I don't want pity, after all... I don't feel sorry for myself so nobody else gets to!

I actually feel lucky; I've LIVED and it's been a fun ride, and the ride isn't over! Now that I'm used to not working, I feel lucky that I'm available for my friends and family. Quite frankly, I've always been the person you called for help or if you needed a friend to talk to. Not having my friends physically in front of me can trigger my depression but I talk it out on the phone with my dad, who is 3,000 miles away.

Who has been there for you? How?

I talk to my dad over the phone every night. My mom passed away before the first sores appeared.

I don't want pity – I don't feel sorry for myself so nobody else gets to!

I've been dealt a challenging hand and if you have too, don't fold – the payout is good.

I've been dealt a challenging hand and if you have too, don't fold – the payout is good.

What's your advice to someone else living with Lupus?

Prepare yourself. For me, I set up therapy to prepare myself for the loss I knew I'd feel. The loss of my lifestyle is as real as the death of a loved one. You are in fact losing the you that you've known, but you're about to find out how truly strong and awesome you are, and you'll be able to handle it!

People around you may disappoint you by failing to recognize your awesomeness – how could they when your conversations with them are as regular friends talking about a movie or sharing a joke. Doctors are the ones you talk to about how much your life has changed and how much pain you're having.

Also, don't allow your doctor to ask, "How has your quality of life been this month?" I mean, talk about setting me up for depression! You'll always end up comparing it to your life before lupus – apples and oranges! I see no reason to remind myself of what I can no longer do. That will not empower me. I've been dealt a challenging hand and if you have too, don't fold; the payout is good. For me it was what the lyrics speak of in Whitney Houston’s "The Greatest Love of All."

You're about to find out how truly strong and awesome you are, and you'll be able to handle it!

Is there anything else we should know?

I was – and still am – intelligent, selfless, gracious, humble, and an asset to our world. I've had to get used to being looked at and judged by people who won't approach me because of the way I look. I've always been a "beauty is skin deep" person, and I know I'm still beautiful, but before others saw beauty, too – I was a model. It's hard to cover up the damage that has been done, and people try not to stare before getting away quickly. I didn't like being coveted because of beauty that I had nothing to do with, and I still don't like my appearance being the reason I'm approached, or NOT approached... I'm still the same amount of beautiful as I always was!

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