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. 

How many "ologists" does a girl need?

A snippet from a conversation with my hubby last night

Him: Do you see Dr. Head tomorrow?

Me:  No, I am seeing my neurologist

Him:  Isn't that Dr Head?

Me:  No, he's my rheumatologist

And it could have gone on involving all sorts of other "ologists".  Such is the life of a Sjoggie patient.  The nurses in the doctor's offices know me when I call and the pharmacy staff knows me on sight.  

In other Sjogren's related news, one of my dear dear friends started an online fundraiser for the mountain of medical debt and continuing medical expenses that I have incurred during this journey.  I've said it before, and I don't feel like I can say it enough, God has truly blessed us through our friends and family.  Even though this fundraiser has only been up for 6 days, it has already raise over $1000.  The kindness and generosity of the people in our lives blow me away.

God bless!

Where has time gone?

It is long past time that I resurrect this blog.  It's been almost a year since my last post and oh so many things have happened since then.  Our two middle kids started high school (ack!), I have hit my last year before the 40's, the Sjogren's is still going strong but God is always proving Himself stronger, and many blessings have come our way.  

Let me start with the blessings.  Recently our pastor asked us to send him an email about our "dry ground" experiences (Joshua 3 & 4-God parted the Jordan for the Israelites and as further evidence of His miracles, the ground under the Jordan was dry) and so I composed a short email of what I was grateful for and the ways that God shows His ability to provide "dry ground" in my  life.  My email:

When my illness struck in 2011, I had no idea what a blessing the entire journey was going to be.  The first two days in the hospital I was unconscious and the guys in Jimmy's mens group did a conference call with him to pray over me.  Even though the doctors couldn't tell him if I was going to live, after that prayer, he had a peace beyond all understanding settle upon him. I am grateful for those prayers and for the fact that I did wake up.  The blessings continued to pour in. Visits (one friend even came to the hospital to paint my nails), meals (Jimmy's company brought meals to our family every single day for a month), prayers, a prayer shawl from our church family, friends who cleaned our house and did our laundry, friends who drove our kids to Chicago to stay with my parents during that first scary week, and a friend who came and spent a week helping Jimmy take care of the kids during one of my longer stays.  After the first few hospitalizations, work became difficult and so we went through about a year of financial hardship and even then, the blessings poured in.  One friend drove me to Ann Arbor for doctor's appointments.  She took days off work, wouldn't let me pay for gas and even bought lunch on those trips.  Another friend had four new tires put on our van.  Friends continued to bring meals or gift cards to grocery stores.  I remember one occasion when things were really tight and food was scarce.  A $300 Meijer gift card showed up in our mail anonymously.  God continued to put people in our lives who cared for us in every way that we needed. 

Even now, over three years into this journey, God continues to show up.  One of the side effects of my disease is that I don't produce enough saliva to keep the enamel on my teeth so they are ravaged and decayed.  With our seemingly insurmountable mountain of medical debt, dental work had to take a back seat.  But God came through again.  My family took exchange students when I was growing up and we recently reconnected with the second student we had hosted.  He came to visit in November and it turns out he is a dentist.  He has offered to do over $30,000 worth of dental work for free.  I will be heading to Germany for the work at the end of February.  And another friend is organizing a fundraiser to help with the medical debt. 

Every single time I think that we can't be blessed more, God has shown up and amazed me.  He continues to supply "good measure, pressed down, shaken together and running over".

 

God has also blessed us with some pretty amazing kids.  It's so wonderful to see how much they are growing into their own personalities and how sweet, kind, generous and loving they are.  I still can't get over the fact that we have two high schoolers now and our baby isn't too far behind.

 

Even with the "thorn in my side" of Sjogren's, I still feel blessed beyond measure.  I always try to keep Paul's words in mind from 2 Corinthians:  Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the Lord to take it away from me.  But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong.   2 Corinthians 12:7-10

 

Sometimes it's harder to remember those words, especially during a Sjogren's flare like I currently  have going.  As anyone with SJS will tell you, winter is hard on us dry people.  Our already dry eyes, noses, skin, lips, etc. get much more dry with a lack of humidity.  My mouth has been sore and dry, my lips scabbed and bleeding.  My poor right eyelid is red, swollen and scabbed at the eyelash line and my skin...well I've got lots of discoid dermatitis going on at the moment. My life consists of constant application of lip balm, a humidifier, prescription corticosteroid cream, warm compresses to my eye and LOTS of lotion and water.  

I really will make an effort to keep up with this.  But for now...it's nap time! 

 

5th Grade Field Day & Camp

One of the many blessings of being a stay at home mom is the fact that I can be more actively involved with the kids at school.  It was great to be able to attend Annika's 5th grade field day at the high school and being a camp chaperone....well that was definitely an experience!

My little peanut running in the marathon

I have to say that it has been a bittersweet week for me.  Sweet because I love spending time with my kiddo and it makes her so happy to have her mama along.  Sad because this is it...she will officially be in middle school next year and while she'll always be my baby, she's growing up.

Ani and some of her besties

I keep telling her to make sure she keeps her friends close.  I have always regretted not staying in touch with a lot of my close friends from my youth.  I tell Ani she needs to make sure she has a friend like her Aunt Lea (my bestie) in her life.  It's vital!

Running in the 200 meter dash

Ani tells me that she might want to take up track once she can participate in sports (7th grade) in middle school.  She & I are going to try the Couch to 5K program this summer. 

Ani & one of our refugee friends, Ornella

 I am so glad that God lead me to volunteering with the refugees.  It has enriched our lives and been a great experience for our kids.

Camp was a fun yet thoroughly exhausting day.  The kids had a blast though and that's all that matters.

Ani & some classmates canoeing

A little horseback riding

And facing her fears on the high ropes course

 Coming down the zip line

I was in bed by 7 last night since two days going really kicked my rear end but it was so worth it.  Thank you Heavenly Father, for giving me such wonderful opportunities!