Let me introduce myself. I am Natasha Lubin, otherwise known as Natasha or Natasha L online. Now that that is out of the way, let us start on the trail of discovery. Not all discoveries are pleasant so be forewarned.
Many years ago, more years that I would like to remember, I was diagnosed with a series of esoteric diseases I had never heard of nor cared much about. They included, lupus, scleroderma, Raynaud's, a little of this and a little of that, fibromyalgia and finally Sjögren's.
Of course, as each ailment developed, I learned more about how little control I truly have over my body. But Sjögren's I could see and feel! My mouth was dry, so I carried water bottles; yes, bottles, because I was always losing them. I also used eye drops, salves and ointments, just to keep moist. Look, my aunt loved the sun and her skin showed it, yet I hate the sun but my skin did not know that because it began to look like my aunt's until I discovered ways of coping. One day, the doctor looked at my tongue and commented on what a beautiful white color it was. I was not laughing.
So, one thing led to another and I ended up with an ophthalmologist who put plugs in the lower lids because my eyes were bone dry. The plugs did not help. I kept up with the eye drops and went my merry way until I found I was cleaning dirty windows and glasses that were not dirty. I found a great ophthalmologist who discovered I was bone dry, had floaters in both eyes and that my left eye was in danger of having the retina detach. He was also concerned about scratching of the cornea. Well, more plugs later, I am still bone dry, still have floaters and flashing lights, but feel I am being watched closely. I am taking a variety of stronger eye drop medications and gels and have recently been put on drops that are one step below steroids.
Okay, how does Sjögren's meet Scleroderma? I am sorry I found out! I was told I had propulsion problems. To me, propulsion means jet or plumbing problems, or waste disposals. Where would my system have propulsion problems? The esophagus is not working too well, I cannot swallow. Scleroderma, right? Well, the Sjögren's helps that too, because with no saliva, there is no fluid to propel. It makes sense, at least to me. Looking further, I was told my main problem will be my digestive tract, scleroderma-wise. However, since scleroderma (SD) and Sjögren's (SDS, get it) met and joined forces, it is like a double whammy! No fluids means less and less propulsion, SD causes digestive problems, Sjögren's helps SD by creating more problems, and they go merrily along wreaking havoc in my body. And here I thought I controlled it all.
To add insult to injury, I am developing a great deal of wax in my ears. Guess what, no fluid causes more wax buildup. Nice, huh? And so it goes. I started this page so I can keep finding connections between all of our diseases and how they interact upon on another. Going through this is an education that should not be wasted. I will continue to keep you informed, as best I can and should you wish to contact me, feel free to do so.
Email: [email protected]
Email address updated 3-24-03.
New email address 01-15-08 SLE
Story Artist: Natasha Lubin
Blog link added 07-22-11 SLE
Pg1: Thelma & Louise of the Geriatric Set by Natasha Lubin (PDF)
Pg2-7: Thelma & Louise (PDF)
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.