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 

Living with a Chronic Illness

My symptoms started at the age of 15.  My parotid gland would swell up, get very hard, red and painful.  It was a mystery.  At first they thought it was the mumps but that test came back negative.  Then they removed my wisdom teeth because they were all impacted.  One doctor said it was a "pre-arthritic condition".  My all-time favorite was the quack who decided I had "extra loops" in my salivary glands that would cause a blockage and he stuck something very similar to fish wire into the glands in my cheek to "clear it out".  Fast forward 9 years and I'm at an Urgent Care center for the swelling again.  In a rare moment...the Urgent Care doctor asked if I had ever been tested for an autoimmune disease and that began my journey.  I made an appointment immediately and found that I had both of the positive Sjgogren's Antibodies as well as a positive ANA and Rheumatoid factor.  I also was diagnosed with Fibromyalgia.  Not even two weeks prior to my diagnosis, I had found out that I was pregnant as well which not only limited my treatment options at the time, but it also caused me to see an OB heart specialist since the SJS Antibodies can cause heart blockage in fetuses.  

Looking back, the beginning of my SJS journey seems so simple.  I remember thinking....well, I just can't wear contacts anymore and will need to stay on top of dental work.  As anyone living with an autoimmune disease can tell you, there are periods of remission.  I had times where I could go a year or two without even meds.  Then there would be periods of no sleep, pure exhaustion, vision problems and more dental problems than I could handle.  I spent a month during the summer of 2007 legally blind in one eye and almost legally blind in the other due to dryness.  I've had all of my tear ducts plugged so that I can retain any moisture that I do create and still I struggle with dryness in my eyes.  I think most people think of SJS as more of a fluff disease....some dryness, some dental work.  It's an invisible, insidious disease and people just don't realize how much work and effort it takes.  Maintaining moisture in my eyes and mouth, all the medications I am on that I have to juggle.  The monthly blood work that has to be done, the frequent doctor appointments, the pure exhaustion of the disease....it can be miserable and soul sucking.  

And then....in early December of last year I became miserably ill.  I was so sick that my husband actually had to drive me home from work on Monday morning when the illness hit me swiftly like a ton of bricks.  I had a high temp, nausea, vomiting, headaches....all of the classic symptoms of meningitis minus the neck ache.  My doctor said it was the flu bug and sent me home to rest and take lots of fluids.  I was off four days that week but then started to feel fine again.  Less than two weeks later, I was in ER getting a spinal tap.  Again, the illness hit swiftly...in less than 2 hours I went from fine and eating dinner to barely conscious and violently ill.  I lost consciousness that evening and didn't regain it for two days.  I spent five days in ICU and was sent home on very heavy IV antibiotics because they were proactively treating me for bacterial meningitis.  The spinal tap came back negative and all of my blood work was normal (as normal as it can be for a Sjoggie).  I was hospitalized twice more over the next two weeks for complications of the spinal tap and then the antibiotics.  Finally, it seemed like I was on the mend until the middle of January when it hit again with a vengeance.  Again, it took less than two hours for me to go from normal to violently ill and I spent another week in ICU.  I was sent home on IV antibiotics again even though the spinal taps were all negative.  Life resumed and I finally went back to work in March.  On April 1st, the illness struck again and I spent another week in ICU.  At this point, they had finally determined that the meningitis was being caused by my SJS-it is apparently a very rare symptom to have aseptic (without infection) meningitis as a Sjogren's patient.  The rest of the summer passed quite normally but in early October, meningitis struck again and I was hospitalized for almost a week.  Less than two weeks later, it struck again.  I was released from the hospital on Tuesday of this week and still I am very weak and tired.  This constant illness is draining...and being hospitalized always seems to make me more ill.  I'm covered in bruises (twice daily injections of Heprin will do that to you), pokes and aches.  I am so tired that even doing the smallest chore can make me shaky and require me to plop on the couch for a few hours.  Yesterday, for example, I spent the afternoon with a girlfriend.  Four hours, just hanging at her house visiting on the couch.  By the time I got home, I was so shaky my husband quickly ushered me to the couch and made alternate plans for dinner as there was no way I was going to be up to cooking.  

I know that some people think that those of us who suffer from autoimmune diseases are hypochondriacs, that we exaggerate how much the diseases affect us but if they could just live one day in our shoes, I think it would open their eyes to the daily suffering we go through.  Ok ok.....I'll get off my soap box!

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.