Sjogren's Syndrome: Worse for a Nurse?

Sjogren's Syndrome: Worse for a Nurse?
Sometimes I think nurses are the worst patients in the world.

Hundreds, if not thousands of nurse’s, are chronically sick, with diseases such as fibromyalgia, lupus, chronic fatigue, rheumatoid arthritis, and diabetes.  I know this to be true because I am one of those nurses.


In 2003, just a little over a year after opening my senior homecare agency, I became very sick.  During that year I had some occasional incidences of abdominal pain, which I chalked up to gall bladder.  Funny how nurses always diagnose themselves, put off going to the doctor, or seek treatment until we find it necessary.   If you’re a nurse or like me, you wait and see how things progress, or wait until it gets pretty bad before you make an appointment.  Sometimes I think nurses are the worst patients in the world.  We diagnose ourselves, adjust or discontinue our medications, and we go to our physicians with ideas of what they need to do.  We’re almost lethal to ourselves.


My pretty bad time came that December.  The abdominal pain had been occurring more frequently throughout the year, and was daily by the time I finally went to the doctor.  As we all do, I assumed I’d see my doctor; maybe get a diagnostic test or two, and either have surgery or get on some medication.  Little did I know; I was up for the battle of my life!


To keep this story from being a book, the short version is that I spent the next 5 years battling to find a diagnosis.  In all the times I had self-diagnosed, this time was very different.  In 4 months I lost 60 lbs, and became sicker and sicker until at one point I had up to 57 symptoms.  I went through what felt like a gazillion diagnostic tests, 13 doctors of differing specialties in my area, 2 trips to the Cleveland Clinic, 2 surgeries, and countless medication trials, which produced some of the most horrifying side effects I ever imagined.  I could chalk some symptoms up to a possible diagnosis, but not the range and intensity of what I was dealing with.  Daily vomiting, edema, hair loss, temperature regulation problems, the list goes on and on.  Symptoms would come and go, some never left.


I was literally so sick there were days that I was sure I would die from whatever mystery illness I had.  I spent most of my time in bed when I was no longer able to push myself to work, and take care of my home and life.  I was divorced a little after a year of being sick, was accused of being a drug addict by a pharmacist, and even family and friends, and rode a rollercoaster of emotions for 5 full years.  I battled the board of my insurance company after receiving a denial to go to the Cleveland or Mayo Clinic, at the request of several physicians I’d seen.   I was desperate to find out what was stealing my life.


There is no way in the world I could’ve worked a job.  I even tried.  Divorce is not cheap.  Keeping my house was also costly.  New in business, I wasn’t making a lot of money, and I took on a 2nd job as a contingent hospice nurse to offset the expenses of such a life change.  Contingent is great, I thought.  Tell them when I’ll work, and earn a few dollars, part time.  The only problem with that is they wanted a schedule in advance, and I didn’t know on any given day if I would be able to get out of bed.  Every day I was sick, but if I could force myself to work my 3p-8p shift, I would.  My supervisor knew I was suffering from a mystery illness, and was more than accommodating.  The guilt of calling in at the last minute, causing other nurses to have to cover me got to be too much.  I resigned.  My supervisor was amazing and asked me to stay, but I had enough guilt without adding this.


Finally in the fall of 2007, I decided to leave the MD world and see if a holistic DO could help.  I was running out of specialists in the MD world, and still desperate for an answer.  There I started being diagnosed with Chronic Fatigue. This was the first time in 4 years that someone really confirmed just how sick I was.  That in itself was very emotional. All the doctors before understood and sympathized with the fact that I was sick, but when tests came back negative, one after another, they had trouble understanding illnesses that they couldn’t identify. I would leave MD offices with them holding my hand, saying with concern in their eyes, “I’m sorry, I don’t know what is wrong with you.” 


I left the holistic DO after a couple months because the treatment plan not only wasn’t working, but the doctor wanted to add different aspects of treatment in stages.  I had already suffered for 4 years and was very impatient.  Subsequently I went to a specialized center that a nurse friend of mine, who was also sick, suggested.  They found more underlying issues that they said contributed to the CFS, and I set forth on a course of treatment of weekly IV’s, injections, and 54 pills and powders a day that were a combination of prescription medications and supplements. 


After 8 months of treatment that exhausted my savings, and had me charging treatments, of between $700 and $2000 a month I was done. Note; I had health insurance.  I wasn’t done because it worked.  I was done because I was broke and in debt, and found no marked improvement.  I met many nurses at that treatment center as we’d all sit in recliners hooked up to IV’s for one and a half to two hours weekly.  I wondered if there was some connection to working in the medical field?  Was there some type of exposure, or were we just workaholics that drove ourselves to illness?  No one knows what causes CFS or Fibromyalgia, so that is left at speculation.


So many times throughout the last 7 years, and even today, I wonder how many lay people give up the battle.  Navigating the system is difficult when you’re a healthcare professional, let alone navigating a world that is foreign to you.  I wonder how many people have lost everything because a life stealing illness changed everything.  I wonder how many people are out there with a mystery illness just praying to be diagnosed. 


Leaving the center left me with very little options, but I figured I could find some type of help since I had a diagnosis.  I had done countless hours of research on the web, including research trials.  I was on a different insurance than when I was married that allowed me to go to another local and prominent hospital that I couldn’t access on the old policy.  The University of Michigan was doing studies, so I made an appointment with Rheumatology, just 15 minutes from where I live.  My very 1st appointment the rheumatologist said he wanted a saliva study.  Well, that was one test I hadn’t had.  I had the test, and his suspicions were confirmed, I had Sjogren’s Syndrome.  I remembered hearing the term sometime in my nursing career, but couldn’t recall anything about it.  One appointment, Boom!  He suspected Sjogren’s and my 2nd appointment following the test I was diagnosed.  5 years of hell, and 2 visits to 1 physician and I am diagnosed.  CRAZY!


The rheumatologist performed another test in the office with small papers he inserted in my eyes. I held them shut for the 5 minutes or so necessary, and when he went to remove them, they literally stuck to my eyeballs.  OUCH!  Confirmation again… I had Sjogren’s.  The physician proceeded to tell me Sjogren’s Syndrome was my primary diagnosis and Chronic Fatigue was secondary.  The conversation was pretty much, you are sick, there is no cure or cause, and you will be for the rest of your life.  The best we can do is treat the symptoms as much as that’s possible.


Most people would think that getting diagnosed with an incurable illness that has stolen the life you knew, never to return to that life again, would be devastating news.  I was feeling more ecstatic than devastated!  By this time I was a very sick woman for 5 years, and it was less than a year that I even partially knew what was taking my life.  It is hard to imagine what that is like, unless you have suffered with a mystery illness, but having a full diagnosis, a name, a cause, a confirmation, was AWESOME!!!


I did have a little time of anger mixed in that high of finally being diagnosed.  I was angry that not one physician, hospital, or anyone I saw in the course of those 5 years even mentioned the word Sjogren’s. It is one of the most prevalent autoimmune disorders with an estimate of 4 million people affected in the US.  That’s 11 times the number of adults diagnosed with MS in the US according to the Cleveland Clinic.  Why doesn’t anybody know about it?  Why does it take an average of 11 years to get diagnosed with Sjogren’s?  I was also angry at my previous insurance company for not allowing me to seek evaluations and possible treatment where I could’ve been saved years of agony.  The anger quickly subsided, and I spent time in thought.  The battle was over, my persistence paid off. 


I started to function a bit better after seeing the rheumatologist.  He changed meds, and added prednisone, but I by no means could physically work as I had as a healthy person. I had already stepped back from going to the office daily, and reduced my activity by great measures, just because my body wouldn’t cooperate.  So in a weird kind of way I was used to that.  I still had a bit of sadness about being unable to attend to my agency, client’s and staff like I wanted to, but I couldn’t spend time focusing on what I couldn’t do.  It was time to focus on what I could do.  What I could do from home, with many days still spent in bed.  I shed the guilt, the anger, the depression, and the loss.  I began focusing on what I could physically and mentally do.


Chronic illness takes incredible strength.  To put one foot in front of the other every single day in a body that hurts and is limited is not for sissies!  Focusing on my strengths led me to happiness.  I hope my story can help the undiagnosed fight the battle, and the chronically sick know that we can live a happy and productive life despite illness.