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STORIES -'I am one of 1000 faces of Lupus' 
-Naana’s Story -

After feeling sorry for myself for a minute, I knew I had to come up with a quick action plan. I have always been a strong person, so I had to make a choice that would mirror my strengths. After all, this was going to be a part of my life.

I was not going to let people stop seeing me as the same person, and stigmatize me as the girl with Overlapping Lupus and Scleroderma. No! I am Naana, with a very small percentage of my personality affected by this disease.

Lupus a disease with a thousand faces; I am one of the faces of Lupus. After being in limbo and visiting several hospitals which just dismissed me with the diagnosis of a very bad viral infection, flu and worst of all anxiety attacks, I am somewhat glad to say I was my own health advocate, and did receive better care now.

A friend was describing her limitations with lupus - using the only thing in sight, she used spoons. She would take one spoon out of the 12 spoon collection to represent what she is limited to do in a day.

Well, on good days, I operate on about six spoons.  Most mornings I wake up with very blurry vision, because my tear ducts have been dried out by the disease. Then I manage to gather my aching body into the bathroom to shower, after getting short of breath trying to reach my back. This day, the long back sponge comes in handy, (the shortness of breath is due to my restrictive lungs diseases). I need to catch my breath before I can wipe myself, then putting on lotion and picking up clothes to wear for the day is like strategizing a war. If the weather is too cold, I will have to put on several layers, not forgetting to carefully pick clothes which have no buttons, since the digital ulcers make it difficult to touch anything. Then I quickly and gently brush my teeth, so that I don’t irritate the mouth ulcers, and rinse with a prescribed mouth wash which leaves my tongue and mouth numb for the next thirty minutes. If I had uninterrupted sleep of close to four hours, I will have enough energy to pull on my boots, or else, just the flat slip on's will do, but that means I will be freezing on my feet due to the Raynaud’s Syndrome.  After all this is said and done, I will take several medications, one to help correct my digestive system, another to dilate my blood vessels as well as lower my blood pressure in order not to have a heart attack. Then the grand finale is a dose of my inhaler, just to dilate my lungs to help me breathe easily without having my lungs spasming. You never take the sun for granted; I slather myself with sun block with a very high percentage ultra violet block, since sitting under even a fluorescent light can have me looking like I have over-applied blush on my cheeks.

This I call a good day. This is because I am now one of the lucky people who made it to the next day alive.

On other days when I am stuck in bed, I take the opportunity to see all the imperfections on the ceiling in my room, the dust on the armoire, and plan to clean it when I am up. Unfortunately I cannot make plans like everyone else, I am now a believer of living the moment and living each day like it is my last.


 

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