One out of 1000 faces!!!

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 will  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 fraction of my personality affected by this disease.

Lupus a disease with a thousand face, I am one of the faces of Lupus.  After liviing with the unknown 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 lupus patient  was describing her limitations with  living  lupus using the only thing in site, she used spoons.  She will take one spoon out of the 12 spoons collection to represents what she is limited to do in a day.

Well, on good days, I manage to operate on almost six spoons for the whole day.  Most mornings I wake up with very blurry vision, which is due to my  tear ducts which have been dried out by the disease. This puts me at a very high risk of getting eye infections as well as a very irritating itch in both eys. Then I managed to gather my aching body into the bathroom to shower, after been short of breath trying to reach my back is almost impossible on certain days.. This day, the long back sponge comes in handy, (the shortness of breath is due to my restrictive lungs dieases). I need to catch my breath and sit to rest for a few minutes 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 of clothing.  Not forgetting the severe cold weather in Toronto. I will have to carefully pick clothes which have no buttons, since the digital ulcers make it difficult to touch anything.  This day, I will need a larger hand bag, and if I have errands, I will have to put seperate my money in order to easily reach it without thouching anything in my bag to irritate my finger ulcerss.  Then I quickly and gently brush my teeth, and not irritate the mouth ulcers, and rinse with a perscribed mouth wash which leaves my tongue and mouth numb for the next thrity minutes.  When the ulcers are very bad, I wll have to continue rinsing my mouth with baking soda and water. This solution helps dry out the mouth ulcers.  If I have had an 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 raynauds syndrome.  After all this is said and done,  I will take several medications, one to help correct my digestive system, other to dilate my blood vessels as well as lower my blood pressure in order not to have a heart attack.  Another to minimize the pain in my joints,  Then the grand finale is a dose of my inhaler, just to dilate my lungs to help me breath easily without having my lungs spasming avoiding a heart attack..  

You never take the sun for granted,  Even in the winter, I stillI slather myself with sun block with a very high percentage Ultra violet block, since sitting under a fluroscent light can have me looking like I have over applied blush on my cheeks.

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

On other days when I am stucked in bed, I take the opportunity to see all the inperfections on the ceiling in my room, the dust on the armoire, and plan to clean it when am up, unfortunately I can not make plans like everyone else, since I am not sure how I will feel the next day, I am now a firm believer of living the moment and living each day like it is my last.