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Lynne's Story

      When I was 19 I had a number of fearsome turns, in which my scalp felt hot and tingly, I felt dizzy, and the only relief was to lie down (before I fell down) flat.  Some years later, I thought it was likely that I'd had early (bloody early!) menopausal "hot flashes", due to having been given a contraceptive at age thirteen by the doctor whose reason was to treat "inter-period" pains, which were probably ovulation pains.  He never told either my mother or me what the pills were, and I took them for 6 years without a break!  I've just read about these flashes as related by Sjogren's people, and 'bing!'

     From about the age of 27 (after my first son was born) I had repeated bouts of vaginal infections for years, using topical medication each time and oral medication once or twice as well.  Every antibiotic set off another bout, and the need for an antibiotic was attributed to my smoking habit increasing the tendency for respiratory infections to set in.  I never seemed to be able to breathe quietly, my nose always felt stuffed up.  After stopping smoking, I still kept getting vaginal infections, mystifying my GPs, the third of whom sent me to a skin specialist to see if I was prone to any allergies.  (This in mid-1992 at age 41.)

      The skin specialist noticed a melanoma on my ankle, and her quick eyes were a godsend for me.  I had it removed and tested - and then had to have a larger area excised.  The "hole" was about 2 1/2 cm across, and as deep as three coins.  I had to have skin grafted from the opposite thigh (and let them take extra skin for the burns unit emergency skin graft programme).  A few months later I found a lump in the groin.  The lump was an enlarged lymph node, and it was removed; this was to happen twice more.  The fourth time I found a lump, it was confirmed that the whole cluster of lymph nodes were affected and enlarged.  I broke down and cried - standing with my husband in an alcove in the hospital corridor.

      During the surgery - full anaesthetic - apparently the surgeon had to scrape the cancerous growths from around both the femoral artery and the nerve.  It must be tense work!  The nurses were laughing when they told me that the artery had split open as the surgeon was working, and squirted blood not only all down his whites but also clear across the theatre and down the walls!  The nerve was in fact left damaged, to slowly improve over the years; I still have a strangely mismatched set of responses to stimuli such as touch.  Since this operation I've had to wear a pressure garment, to force lymphatic fluid out of that leg.  After recovery was well under way, I received radiotherapy to the groin area, extending to the lower abdomen (thus bringing on a sort-of early menopause).

      I moved to a rural school northwest of Nappier, in 1993, for my career.  Much later, I developed excruciating back pain which came on rapidly over about a week.  It was so bad that at the end of a days teaching I'd go home to drape, on hands and knees, over a coffee table to take off the weight.  My GP ordered my husband to drive me to Palmerston North Hospital; by the time we'd driven home to arrange care for the kids, packed and driven to P.N., the admission was all set up and they wheeled me in to the oncology ward without any fuss at all.  I had radiotherapy to the spine the first day - what a surprise!  Instant relief!  I had daily bursts of radio, and by the time that two weeks of daily treatment was ended I was staying with Doug in a cancer families hostel and walking to the oncology ward for outpatient treatment.  I was then offered an unusual regime of cancer treatment, as a trial of a low dose, long duration.  I took the opportunity and don't regret it at all.

      I was to have weekly chemotherapy treatments for six months, and a three-times-a-week routine of self administered injections of 'immunotherapy', for eighteen months.  I found I could inject myself in the stomach wall quite readily if I ignored the nurses who said "Do it fast and it doesn't hurt".  I had to do it slowly - and it didn't hurt any more than the other way, which simply scared me silly!

      Then, a slip with a kitchen knife, stabbing my own hand.  Then followed an unbelievable infection - septicemia.  I don’t remember much of its approach, except the diarrhea.  I was so far gone, when Doug got me to the hospital I can't remember a thing.  They had to cut off my wedding ring (fingers were swollen).  I was on a drip for liquid, and blood transfusions.  My blood pressure dropped to 30 over zero!  Nurses rang home to call Doug back into the hospital as early as he could make it; he left our eldest son in charge of the two younger children (he was then 15 or 16) and arrived at about six, expecting the worst.  My memory of this experience is a blank on everything except an "epiphany" - I dreamed, and I met my father (who had been dead for six years).  He was in front of a glow of the purest white light, yet his face was clearly lit.  He was smiling, happy to see me.  I felt comfortable, loved, warm - and somehow knew he would be there when it was my time to die.  But not yet.  When I regained consciousness (amazing doctors, nurses, and Doug who'd prepared for the worst), I felt at peace.

      From that moment onwards I have reexamined my stubborn avoidance of considering a God, Heaven, or any spiritual belief.  I now know there is a Heaven, and for me it will mean being with my Dad again.  I recovered, and resumed the immunotherapy after a break of four weeks or so.

      After another move for my career (in 1995, to Masterton), I was shown an X-ray which revealed the affected vertebrae was hollow, and slightly collapsed - creepy!  But the positive side of the deal is that I had so little nausea it doesn't count, and the only hair loss was that which resulted from the radio therapy to the groin!  Well before the licensed quantity of the immunotherapy medication ran out, my GP, oncologist, and I agreed that as the vertebra was building up new bone growth inside itself, and as blood tests revealed I was pretty healthy considering, that I could take a break from the immunotherapy (of which I had become really wearied).  I decided that rather than have it all sitting around getting closer to its expiration date, it should be used, so I donated it to the Palmerston North Oncology department for use in another patient trial.  I hope the patient who tried it found it as lucky a break as I did!

      As my trial of three simultaneous therapies is considered an unusual feat, my GPs from all three towns and my oncologist have all kept a good eye on me.  When a teaching colleague spotted my cold-whitened fingers one day, she told me about her Raynaud's syndrome.  I mentioned it to my GP who matched it with my increasing fatigue, dry mouth, the tongue tasting nothing and feeling scalded, and gritty eyes.  (I had thought these were all the result of late nights, not being an easy one to drop off to sleep; I had been taking low dosage sleeping pills for a few months but waking as tired as if I'd not bothered.)

     He told me about Sjogren's, and before a fortnight was up I had seen a rheumatologist, who confirmed it after a set of blood tests and carefully looking over my records of symptoms and experiences.  I was prescribed Chlorhexadrine (a malaria treatment).  It did seem to make a small improvement in moisture in the vagina and mouth.   I could taste food and smell everything, and could breathe easily.  But also my leg (the one with no lymphatic system in the groin) became slightly bloated.  My rheumatologist offered a switch to Methotrexate (7.5 mgs once a week), with Prednisone to take daily, on a reducing dosage, in the early weeks of using the Methotrexate.  My symptoms are back, but are supposed to diminish with the Methotrexate now at 10 mgs.

      When I had first heard of Sjogren's, I found Lynne's web site and learned a lot.  I know I've probably had a relatively easy time so far.  When the fatigue gets me down, I can visit Lynne and her friends and refresh my spirits by reading their courage.  I have more fatigue problems some days, slight occasional swelling in the parotid glands (accompanied by faint ringing in the ears) and sometimes pain in joints in the limbs.  It's a bit uncomfortable to see peoples eyebrows up in their hairline when they see me hobble as I take the first few steps after a time spent sitting, but I feel if they're a friend they either already know, or they'll ask.  I see my rheumatologist as a routine every six months, and my oncologist every year.  I know I can call on either if anything crops up as unusual - my GP keeps me well.

     I want to thank you, Lynne, and your friends for sharing your knowledge - it helps me "get real" if I start thinking "life's not fair, why me"?   I'm grateful to these people who have given us the support of their courage.

  Lynne from New Zealand

Story Copyright © 2000-2007 Lynne S.

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