The Impact of Sjogren's Syndrome on Life

When I find myself in a situation with someone who does not know me or my story, I often feel like I need to defend myself.  I get questions like "Why don't you work?" or "What happened to your teeth?" (that one often comes from children or people who have zero tact).  There are very few people who have heard of Sjogren's Syndrome or know what it does.  When I do run into someone who has heard of it, they often say "Oh, that's the disease that makes you dry right?" Ha!  Understatement of the year but at least they get the concept.  And so often, when I explain that Sjogren's is an autoimmune disease that attacks moisture producing glands, I get the reaction that implies it's no big deal.  Honestly, when I was first diagnosed with it, I figured it was no big deal.  I assumed I would take some meds, use some OTC products to help with the symptoms and voila!  All set!  And I am sure that there are Sjoggie's out there who experience that end of the spectrum.  But not I.  

For starters, my symptoms started when I was 15 when the typical age is usually in the late 30's and early 40's.  My parotid glands would swell, harden and become very painful.  I spent the next nearly ten years chasing one incorrect diagnosis after another.  In the meantime, I was getting exasperated lectures from my dentist for not caring for my teeth in the manner that I should be.  There were always more cavities, and then some tooth decay.  I was so frustrated because it wasn't like I didn't care for my teeth.  It got to the point where I dreaded going to the dentist.  Finally, when I was 24 and newly pregnant with Miss Annika, I received the answers I had been searching for.  From an Urgent Care doctor no less.  He suggested I get tested for Sjogren's Sydrome and that started the ball rolling.  

In the early years after my diagnosis (and after my pregnancy), I took Plaquenil and used OTC products to treat my symptoms.  There were time periods when I didn't need either the medication or the eye drops and then there were others where I would feel like the problem was getting worse.  

Fast forward to 2011.  I was hospitalized for meningitis in mid December.  The tests all came back negative but the doctor's treated it as if it were bacterial meningitis.  I was sent home on a PICC line with Rocephin for 14 days.  As soon as I was sent home, I was back in the hospital for a blood patch treatment due to a botched lumbar puncture.  And just a few days after that, I was back in again for 7 days while they tried to figure out a reoccurring high temperature.  That turned out to be due to an allergic reaction to the Rocephin so the PICC line was removed and I was sent home.  Just a few weeks later, I was hospitalized for meningitis again.  Again, all tests were negative but I was sent home on another PICC line of Vancomycin.  I happened to see my rheumatologist after that and he said that it was very rare but possible for my Sjogren's to be causing the meningitis.  After that, we tried several different medications to subdue the meningitis but nothing worked.  He finally ordered Rituxan for me.  I get full day infusions, two weeks apart, every six months.  And it seems to work....mostly.  Near the end of the six month period, before my next round, I end up in the hospital with meningitis again.  All told, I have had meningitis 12 times in the last three plus years.  That's a lot of meningitis.  

So, obviously the meningitis has a big impact on our lives.  I get miserably sick, and even after the hospitalization, it takes me a good week or two to recover.  The Rituxan, while wonderful at helping with the meningitis also makes me extremely tired and I spend a week or two recovering from that.  Then there are the "flares" commonly associated with Sjogren's.  For me, the flares mean extreme dryness.  Mouth sores, lips cracked, bleeding and scabbed, painful red dry patches of skin, and my eyelids also get swollen, bloody and scabbed as well.  The flares can also cause excessive fatigue.  I am just coming down off of a dryness flare but now I am so tired I can't think straight.  I spent all of yesterday either in bed or on the couch, sleeping or at least dozing.  I have to force myself to get up just to tackle the smallest of household chores.

All of those lovely side effects impact my family as well.  My kids had to grow up quick and learn how to take on more and more of the stuff around the house.  The meningitis often scares my family.  For instance, yesterday I was having a problem with my phone (I didn't realize it) where calls would come in but the phone actually wouldn't ring.  Jimmy tried to call me on his lunch hour and couldn't reach me.  He understandably thought it was a meningitis attack.  In the past I have lost consciousness during an attack and I often don't know who I am or where I am.  He flew home like a crazy man and bust in the front door with a terrified look on his face.

Another way that Sjogren's impacts our lives is financially.  I currently have over $30,000 in medical debt from this journey.  And each year, I accrue another $5,000 because our deductible has to be met before our insurance covers a thing.  That doesn't even count what I spend on all of my prescriptions a year.  The Rituxan alone costs $600 a year.  Those burdens impact the rest of our lives.  Our dryer died over six months ago and we haven't been able to afford to replace it.  Repairs to our van have been put off because of the responsibility of trying to pay down $30,000 in debt.  

Please understand that I would not change a thing about this journey even if it causes difficulties along the way.  For every burden, God has blessed us doubly.  Our friends and church family have been a wonderful support with prayer, meals, and love.  Each time we hit an obstacle, God uses someone to help us around it.  When money for food was scarce, someone anonymously sent a Meijer gift card.  When we needed new tires, a friend had four new ones put on our van.  When our stove died, a friend bought us a new one.  When our dryer died, another friend gave us one. Even the medical debt is being addressed by a fundraiser our friend created for us at YouCaring:   Fundraiser for Medical Debt

God uses these trials to draw us closer to Him as well.  When I finally regained consciousness after my first hospitalization, I realized that God saved my life and it was time to get serious about my dedication to Him.  I was baptized after that in order to publicly show my obedience to Him.  Is it always easy?  No.  Do I get depressed or frustrated?  Definitely.  But God has had His hand in this journey every step of the way, and I know He isn't going to quit on us now.