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!

Sjogren's Syndrome with Neurological Involvement

For anyone who has been with me on this blogging journey, you know that I have been dealing with reoccurring aseptic meningitis.  For those of you who are just joining me, I suffer from Primary Sjogren's Syndrome (read more about that here) with neurological involvement.  Sjogren's (or SJS for short) is primarily an autoimmune disease that attacks the moisture producing glands in the body.  This may not sound awful but imagine having such dry eyes that your corneas are scratched and you can't see.  Or not producing enough saliva (which is what keeps your enamel on your teeth) and having severe tooth decay.  Not the end of the world but highly uncomfortable and a big blow to someone's self-confidence.  

In my case, in addition to the aforementioned symptoms, I also have reoccurring aseptic meningitis.  Since December 2011, I have had meningitis 8 times, and have been hospitalized 9 times.  The biggest challenge is that none of the doctors who have seen me, either in or out of the hospital, have ever seen a patient with this problem.  For my first three rounds of meningitis, the doctors assumed it was bacterial even though my lumbar punctures were coming up negative for bacterial, fungal or viral meningitis.  After my third bout of meningitis, I just happened to see my Rheumatologist for my semi-annual check up and we discussed this odd problem.  He told me that it was a rare but possible side effect to my SJS.  At this point, he put me on Plaquenil in the hopes of suppressing the SJS and therefore stopping the meningitis.  In April, I was hospitalized again and the doctor switched me to Cellcept.  While I was on Cellcept I was hospitalized in October so then I was switched to Methotrexate which is a pill form of chemo.  I was hospitalized shortly after that for a second time in October.  By the time I was hospitalized in December, both my Rheumatologist and the Rheumy in Ann Arbor that I went to for a second opinion decided that the Methotrexate wasn't doing me any good.  This is when the Rituxan was ordered.  It was scheduled for mid January but I was hospitalized the day before my first treatment.  

I was finally feeling well enough to schedule my first IV infusion and that will be starting tomorrow morning.  We're praying that the treatment works and that there aren't too many side effects.  According to my research, there still isn't much known about these SJS related CNS issues and they have not yet proven the efficacy of treatments like Rituxan (see here) but we will keep praying.  My friends and family joke that I am always the exception to the rule, and that if something weird can occur or go wrong, it will happen to me.  Let's hope that isn't the case with this chemo treatment!

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.