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Shelley's Story

     Last month, I was diagnosed with Sjogren's with the aid of a salivary gland biopsy.  My doctors say that my symptoms began over 25 years ago, when I first had parotid gland inflammations.

     Back then, I had pain and swelling of my right parotid gland, accompanied by fever, for over a year.  My dentist referred me to internists, ear-nose-throat specialists, and finally the local dental hospital for evaluation.  After a week of testing, which included having electric shocks to each of my teeth until I screamed in pain, they finally determined this was not caused by a dental problem and referred me to their counterparts in the teaching hospital.

     The ENT department ran a saliogram on me, which is dye injected into the parotid (salivary) gland to take xrays.  The saliogram caused a massive infection, for which I had to be hospitalized.  The infection blew my right cheek out to enormous proportions, and the infection quickly marched down my neck and around to the top of my back.

     I was put on doses of IV antibiotics, plus morphine for the pain, and my family was warned that I might well die as for a spell the infection seemed uncontrollable.  They were also reassured that the Mayo Clinic was only a 15-minute helicopter ride away.

     During this hospitalization, they did a rheumatology work-up on me as I had also had chronic knee inflammations, ulcerative colitis, erythema nodosum, and many other things.  All of my bloodwork came back normal, but they told me they were still quite sure that I had Lupus.  My doctor warned me to stay out of the sun "forever" or I would go into kidney failure.  My parents were told I had less than two years to live, at the rate things were progressing.  And we were all informed that if I had one more symptom of Lupus, I would have to have a renal (kidney) biopsy.

     Afterwards, the parotid gland didn't return to normal.  They wanted to do radiation to it, which I refused. I agreed to an experimental surgery to try to cut the nerve to the parotid gland in the hopes this would cause it to shrink.  This was an inner-ear surgery.

     Experimental was an apropos word for this, as they accidentally cut the nerve to my taste buds but missed the nerve to the parotid gland. Although it only cut the nerve to half of my taste buds, the other side of my taste buds went into sympathetic shock and I was left tasteless for a full year.

     It was very odd having no taste buds!  The first taste that came back to me was garlic.  So, I put garlic on everything -- even ice cream -- and my son came to approach all meals with a wary eye, cringing as he'd see me put garlic on my cereal in the morning.  Next, I could taste apples so I started going through them by the bushel.

     I worked for a health insurance company which self-insured its employees.  My supervisor showed me the hospital claim which said "suspected SLE/collagen vascular disease" and told me they would not be able to afford my impending medical bills.  So, although they had no complaints about my work, I was let go.

     I was a very ill, young, divorced mother of a toddler.  I decided that I had to lose the Lupus near-diagnosis in order to be able to get and keep employment to support my son.  Thus began an unreal odyssey which entailed 20 hospitalizations altogether, mostly for organ or tumor removals.  But I was always careful to keep my big mouth shut so nobody would ruin my life with a Lupus diagnosis, ever again.

     My parotid gland continued flaring over the years but I would ignore it, and it would eventually go away.  I had many eye infections and tried repeatedly but unsuccessfully to wear contact lenses as my eyes were simply too dry.  And due to the dry mouth I was always having dental problems and infections, so I've lost many teeth.

     About five years ago, I hit the wall entirely, and ended up being sent to the Mayo Clinic for evaluation.  They diagnosed me with Chronic Fatigue Syndrome (CFS) "plus" (the plus being for all the symptoms I had which fell outside CFS) and Fibromyalgia.  It took another few years before we all realized that the real culprit was that old bugaboo, autoimmune disease.

     During all these years of having Sjogren's undiagnosed and untreated, they feel that it has spread beyond the lacrimal glands and is likely affecting me throughout my body.  I was put on Plaquenil to help with the attendant joint pain and fatigue.

     I also have many other things besides the Sjogren's, such as fibrosis of the lungs, Raynaud's, labile hypertension, difficulty swallowing, Hashimoto's thyroiditis, GERD, cognitive impairments...oh, the list is impossibly long.  And next week, I'm scheduled to have my second biopsy for suspected Scleroderma.

     I've always had excellent blood work, meaning no positive ANA's and certainly no Sjogren's antibodies.  This has also been a huge strike against me ever becoming properly diagnosed and has earned me more than one referral to a psychiatrist in recent years, once I finally began properly complaining about all my myriad symptoms.

     It is only in the last few months that I have "lucked out" finally with Anticardiolipid Antibodies, Thyroglobulin Antibodies, a positive salivary biopsy, and, at long last, a positive ANA.   All about a mere 25 years overdue!

     Now my rheumatologist is very busy scouring my old medical records to put together a full diagnosis for me, although I have symptoms of so many autoimmune diseases that I think they will quite likely leave it as "CTD" (connective tissue disease.)

     I've been on total disability for four years now. In the past year, I have recuperated enough to run a patient web site, which is Scleroderma from A to Z.  Despite learning so much about autoimmune diseases in doing that, and despite the prevalence of Sjogren's Syndrome among Scleroderma patients and my exceptionally long history of Sjogren's symptoms, the diagnosis still caught me by complete surprise and I feel like a babe in the woods in this regard.

     So I greatly treasure the work that Lynne has done with this web site, and the warmth and insight I've gleaned from the other patient stories.  Please feel free to email me anytime.

Shelley Ensz

Scleroderma from A to Z

Story Copyright © 1999-2010 Shelley Ensz

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