A Day in the Life of a Sjoggie

Wake up
Slather on lip balm
Apply prescription corticosteroid cream to numerous dry patches of skin
Apply lotion
Use eye drops
Apply more lip balm
Raid your cupboard "pharmacy" and take multiple morning pills (hey I'm down to 5 in the morning!)
Eat breakfast
Apply more lip balm
Take morning nap
Wake up
Eye drops
Apply more lip balm
Second application of corticosteroid cream
Liberally apply lotion
Do some household chores
Eat lunch
Eye drops
Refill humidifier
Apply more medicated lip balm
Another lotion application
Heat up TheraPearl eye mask
Put mask on and take an afternoon nap
Wake up
More eye drops
Apply more lip balm and lotion
Do assorted mom/wife jobs like check grades online, verify homework, cook dinner, ferry kids around
Take shower
Apply In-Shower lotion
After shower apply more corticosteroid cream
Apply more lotion and lip balm
Put ointment in eyes
Go to bed
Repeat ad nauseum

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! 

 

Sjogren's....the gift that keeps on giving

My posts have been few and far between lately, and since God has blessed me with a meningitis-free summer so far, there has not been much health news to report.  But, with Sjogren's Syndrome being the wily autoimmune disease that it is, it would be too much to hope for a completely symptom free summer.  Sjogren's symptoms include dry mouth, dry skin, dry eyes, and at least in my case, reoccurring aseptic meningitis.  My worst symptom by far this summer is dry eyes.  My left eye is currently so dry that the vision is blurred due to erosion on my cornea.  See, I don't produce enough tears and tears are what removes the grit from underneath your eyelid.  If my body is unable to remove that grit with tears, it scratches my cornea giving me blurred vision and an uncomfortable sensitivity to light.  The ophthalmologist is not able to get me in until October so for now I'm continuing to use eye drops, ointment and warm compresses for comfort.

 Beyond the dry eyes, lately I've been suffering from insomnia (which goes hand in hand with my Fibromyalgia and which is why I am wide awake at 2 am on a Tuesday night) and some meningitis symptom flares, mainly headaches and nausea along with some dizziness.  At the end of last year my rheumy, Dr. H, decided that my next course of treatment would be Rituxan, a chemotherapy treatment used in some cases of lymphoma and rheumatoid arthritis.  Understandably, I was concerned about the idea of an IV chemo treatment (I was already on the pill form of Methotrexate) and I sought a second opinion from a rheumy in Ann Arbor.  My pesky little B cells are the reason Rituxan was recommended.  It is theorized that the B cells in my body are somehow egging on my immune system to continue to attack my body which results in the meningitis.  Rituxan is supposed to deplete my B cells and give me a period of less systemic issues.  The negative (well beyond the obvious whole chemo thing)?  It does not permanently deplete my B cells.

 Yes, it's true, they do make an E-Card for absolutely everything!

This informative article discusses the relapse rate (about 80%) for those who are treated with Rituxan.  My rheumy explained that my treatments would be once, two weeks apart, every six months.  We are now nearing the end of my first six month period and that is likely the reason I have been having so many symptom flares as of late.  After my first round of treatments, I started to feel hopeful and definitely caught a case of selective memory.  Now I recognize that this is likely my reality for a very long time, so I just need to get used to the ups and downs.  I can bear any ups and downs as long as I remember that God is with me and will be my strength in all things.

I can do all things through him who gives me strength.  

Philippians 4:13 

An Ode to Chronic Illness...and the story behind the Laffy Taffy's

My symptoms started at 15.  At first it was a swelling of my cheek along my jawline that would get hard, sometimes red and always very painful.  You wouldn't believe the litany of oddball ideas that doctors tossed at me.  First it was mumps but that came back negative.  Then it was due to my wisdom teeth though it continued to happen after they were removed.  After that it was a "pre-arthritic condition" with no cure.  The worst was the ENT doc who told me it was due to extra loops in my salivary glands.  His cure?  To stick something similar to fish wire into my salivary glands inside my cheeks and "flush" the loops out.  Ouch.  Finally, nearly ten years later I was given the correct diagnosis by...wait for it.....an Urgent Care doctor!  Who knew?  My previous experiences in Urgent Care were all about waiting too long to be referred on to my regular doctor.  This brilliant man asked me if I had ever heard of Sjogren's Syndrome.  Of course, I had not.  Most of the world hasn't.  After I tested positive for SJS, I was referred on to a Rheumatologist and there my journey began.

After my initial diagnosis I was pregnant with Annika and could not take any of the medication that would have been prescribed.  Instead, I went to physical therapy to assist with the symptoms and to help me with the Fibromyalgia that I was also diagnosed with.  Over the next few years my SJS spent a lot of time in remission, but there were bouts of symptoms such as not being able to sleep at night, having many dental problems, my jaw continuing to swell and dry eyes.

The older I got, the worse the symptoms became.  I spent nearly a month one summer legally blind in one eye and almost legally blind in the other due to the dryness problem.   Minus that incident though, my illness was still quite manageable, if annoying.  

Then, in December 2011, something strange happened.  I was hospitalized for meningitis only they couldn't find any cause for it.  The cultures from my LP (lumbar puncture...i.e. spinal tap) were negative, I had no viral infections that could be causing it and suddenly I became a perfect patient for Doctor House.  I was hospitalized five times over the next four months for a total of almost 30 days.  10 of those days were spent in ICU.  Three of those visits were for meningitis.  I had seven spinal taps, multiple MRIs, CAT scans, EEG's, three PICC lines and up to 14 pokes a day in my poor, bruised arms.  After my second meningitis stay in late January, I happened to have a check up with my Rheumatologist.  Luckily, he was able to give me a reason behind the reoccurring cases of meningitis.  Unluckily, it was a very rare symptom of my SJS and therefore, there is no cure.  The best they can do for me is treat my symptoms in an effort to keep the meningitis at bay.

During this medical drama that was my life, I became completely addicted to Laffy Taffy's.  If any of you have ever had meningitis, you will know how miserably sick to your stomach it makes you.  I lost 20 pounds in the first month of my illness because nothing sounded good and I could barely keep anything down.  For some odd reason, I craved Laffy Taffy's.  I mean, I had always liked them but now it seemed like they were one of only a few foods that could calm my stomach.  Over the past eight months or so, each time the meningitis symptoms begin, I reach for a bag of Laffy Taffy's.  I should probably own stock in them by now and this addiction is a standing family joke.