Trusting in the Lord

This morning I was tagged in one of those Facebook posts for a 7 day scripture challenge.  For the  next seven days, I have been asked to post a favorite verse and tag two new people.  Several years ago, during a very tough time in my life, I had a mantra.  Isaiah12:2:  I will trust and not be afraid.  The Lord, the Lord, is my strength and my defense; He has become my salvation. When times got scary, I would repeat that verse over and over again because I couldn't even articulate prayers.  And that brought to mind how often the Lord took care of me when I saw no light at the end of my tunnel.

We found a lump in my breast.  Trust in the Lord.  It was only a cyst.

I was informed that I had Chiari Malformation.  Trust in the Lord.  It is very minor and currently causes no problems.

My husband got laid off.  Trust in the Lord.  The company I was working for at the time hired him and he is still employed there.  They have always been great for him regarding my illness, very understanding when he has to leave at a  moment's notice to take me to the hospital.

Needed new tires but couldn't afford them.  Trust in the Lord.  A friend had four new tires put on our van.

Money was tight and food was scarce.  Trust in the Lord.  An anonymous card arrived with a $300 grocery gift card.

I was hospitalized four times with no answers.  Trust in the Lord.  My rheumatologist figured out the problem and gave us hope for a solution.

Our stove and dryer both died in the same week.  Trust in the Lord.  A friend bought us a stove and another friend gave us a dryer.

Early on in my illness, I wasn't able to do simple every day things.  Trust in the Lord.  Friends and coworkers provided meals for over a month straight.  

I started chemo treatments and needed rides back and forth. Trust in the Lord.  Friends have provided rides back and forth for all of my rounds of chemo.

Sjogren's Syndrome has ruined my teeth and made me very uncomfortable out in public and with strangers.  Trust in the Lord.  A friend has offered to do all of my dental work for FREE!  Praise God!

My medical debt grew to scary and seemingly insurmountable levels.  Trust in the Lord.  A friend has started an online fundraiser to help with the debt.  

My newest challenge is leaving my family for three weeks to go to Germany for my dental work.  I am stressed and scared about the thought.  My family, especially  my husband, has always been my port in a storm.  I am leaving my husband to do both his job and mine during a season of particular busyness with concerts, orthodontics appointments and a crazy robotics schedule.  

I know what I need to do to get through all the fright and stress.  Trust in the Lord  

 

 

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. 

Life Needs a Pause Button

I have always said that someone pushed a fast forward button on my life once I had kids.  It seems like life goes by so quickly while you have growing children in your home.  On one hand, it is awesome to see the person they are becoming.  On the other, it's terrifying to think how close your kiddos are to leaving the nest.

Today was one of those days though that I wished for a pause button.  Aidan, my little man, the one I used to call punkin' until he got too old and too cool for it, just turned 15.  

Instead of playing with Legos and watching cartoons, he is now at Robotic's practice six days a week and ordering his class ring.  He's talking about getting a summer job.  And driver's training.  Lord help.  We have less than three and a half school years before graduation.  How on earth did this happen so quickly?

Aidan is such a blessing.  He is growing into a sweet, kind and loyal young man.  If he comes home and I am in bed, his first question is "are you ok mom?"  He has really learned to go with the flow during my Sjogren's journey and more than once, he has had to be the one to make the call to Dad that I need to go to the hospital.  He is dedicated to his Robotic's team and loves what he does.  He has such a bright future ahead of him, but could it just wait a bit longer?

Being a mom is the toughest and best job I could have ever asked for.  It blesses me daily even when it stresses me out.  I love you Aidan! 

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!

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 

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!

Brain Fog

One of the many joys of Sjogren's Syndrome is a side effect called "Brain fog".  Brain fog, according to this article, is a "condition that most people are familiar with, and yet there is no medical term for it and it cannot be researched by putting ‘brain fog’ into an Internet search engine. The closest term would be ‘mild cognitive dysfunction,’ but this encompasses a wide spectrum of often subtle changes. Brain fog is often experienced as problems with memory or difficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite ‘all there’ mentally."  

Many SJS patients complain of brain fog and it manifests in varying ways.  Prior to the onset of all of the meningitis, I never really had any memory problems.  In fact, most people would have said I had a fantastic memory.  After my first bout of meningitis, where I lost consciousness for a few days, when I first woke up my speech was impaired and my memories were sketchy.  I now consistently have problems with word retrieval and definite issues remembering things.  If my husband is not going to be home when I leave the house, he calls to make sure that the stove is off (I now regularly forget to shut it off), the light is on, the door is locked, etc. 

Yesterday was a perfect example of brain fog.  As part of our homemade life, I make two loaves of English muffin bread every week to have on hand for breakfast.  I mixed up the dough, put them in loaf pans to rise and popped them in the microwave to avoid drafts.  An hour later, I went to grab the loaves and wouldn't you know, they were practically as flat as a pancake.  I had forgotten the yeast!  How I could have forgotten the most vital ingredient in bread is beyond me but I wasted a ton of flour and some time just to prove that SJS can strike at any time.  Lucky me.   

Has it really been a year?

A year ago yesterday was the anniversary of my first hospitalization for meningitis.  What at first seemed like an out of the blue case of bacterial meningitis soon turned into a medical odyssey.  As stressful, scary, frustrating and tiring as the journey has been I can't bring myself to regret it at all.  Without this medical drama, I may never have realized how truly blessed I am.  God has continually shown me how He provides.  He is indeed great!  

Last week my best friend & I took a little road trip to Ann Arbor to meet a new Rheumatologist for a second opinion.  It was comforting to meet a doctor who showed some urgency about the situation and seemed to grasp that a laid back approach just wasn't going to work.  She doesn't seem to think that the Sjogren's Syndrome is the cause of this and she ordered lots of testing to look for a possible Lupus diagnosis.  She also didn't think that the Methotrexate chemo treatment was going to make a difference.  She is leaning towards Cytoxan possibly in addition to Rituxan.  She wants to find a way to get me off of the steroids as it is obviously not ideal to spend this much time on them, especially at these high doses.  In the meantime, she placed me on Fosamax to assist in any possible steroid induced osteoporosis.  She has referred me on to a neurologist in Ann Arbor and also requested a new MRI/MRA.  

I am no longer content to wait patiently for another opinion though, and have a few other options brewing.  My neurologist in town here has ordered a special blood panel that tests for encephalitis.  The lab is scheduled to come to my house in early January to test me for Anti-NMDA Receptor Autoimmune Encephalitis.  I also have an appointment with my GP to get a referral to an Immunologist.  I have a fourth cousin who also happens to have SJS.  She recently saw both her Rheumatologist & Immunologist and brought my bizarre case up.  They were both stumped by the meningitis and highly recommended that I get a full immunologic work up to see if I have any issues on that front.  I'm also on the hunt for a new ophthalmologist....someone who will agree to permanently close up my tear ducts instead of placing punctal plugs.  My eyes are more dry than ever and the plugs are just a stop-gap measure in my opinion.  

Meanwhile....Christmas preparations proceed in the Chase house.  

  A picture of my food prep/baking list that needs to be completed before Christmas.  I suppose it's a good thing that the steroids are seriously cutting into my sleep time.  It gives me the time to bake.  My kitchen looks like a war zone....all the baking supplies and goodie bags stockpiled on every available counter space.

In addition to food prep and baking, it's been a week of volunteering, holiday concerts and doctor appointments.  On Tuesday I volunteered at the Angel Tree gift distribution at the Salvation Army.  Last year was the first time I had done it and I love it.  I hope that I am always able to serve in the capacity.  From there, I went to my baby girl's last holiday concert in her elementary school career which was pretty bittersweet.

 I may be biased, but isn't she adorable??

Yesterday was a doctor appointment for my little man and today is one for me.  Tomorrow is Aidan's holiday concert at school and I may have heard a rumor that he's appearing as Santa Claus.  I don't mind all the busyness....I'm hoping it brings Saturday here sooner.  We get our daughters on Saturday and then our family will be complete once more.  Saturday we'll be spending the evening with our chosen family and Sunday we will celebrate a Christmas Eve candlelight service at church.  I am so blessed to be alive and healthy enough to enjoy all of the bounty God has provided!
  

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!

Recovery....and two weeks of projects

Several times over the last almost two weeks I've sat down to work on another blog post.  And several times I was distracted.  Brain fog or exhaustion from SJS, kids, a book, an email, oh look...a squirrel! (did I mention brain fog?), and various sundry other things like housework, laundry, etc.  It seems to take longer and longer to bounce back to normalcy after a hospitalization.  I am so blessed that I am able to stay home because I have no idea how I could function in a work environment when I'm being hospitalized randomly for a week at a time and then spending another two weeks at home recovering.  

My biggest news from the past two weeks is that my general practitioner has graciously agreed to refer me on to a medical research hospital.  My Rheumatologist, whom I originally asked for a referral, refused on the basis that my meningitis is caused by the SJS which has no cure.  Bollocks!  The meningitis is such a rare symptom that it should be, in my humble opinion, reviewed by the absolute experts in the field.  My GP originally offered to refer me to Mayo but I put a call in to her this past week asking for a referral to Johns Hopkins as they actually have a Sjogren's Center at their facility.  If I'm going to go to the time and expense of traveling for medical purposes, I might as well go to the best right?

Some of my recent projects include:

Breakfast burritos made with turkey bacon, eggs, peppers & cheese that I made and froze for my wonderful hubby.  He struggles getting up in the morning and these make breakfast nice and quick for him.

 My fall floral arrangement in a pumpkin.  This is the second year I've done this and I love the way it looks.  I need to pick up another pumpkin so that I can gut it and do this for our Thanksgiving centerpiece as well.

A blinged out pumpkin I made for my youngest stepdaughter to take home since they do not carve pumpkins with their mom.

My first attempt at a strawberry cheesecake

Witchy cupcakes.  These were a big hit with the kids at our football party

My first attempt at homemade pasta sauce.  I was shooting for Prego....I think I have the right combination down now.

Pumpkin roll bars for my pumpkin freak.  I would assume they've passed inspection because he inhaled them without a word last night.

Since this mama has been up since 2:45 am and there are still 5 pounds of potatoes to be diced for the crock pot before I head to church for a parenting seminar at 9, I should probably stop lollygagging around on the 'net eh?

Meningitis strikes back....

One of the most nerve wracking aspects of Sjogren's Syndrome is that there is no predicting when the symptoms will strike and how bad they will be. I woke up in the middle of the night last night shivering and feeling horrible.  I had a fever, my head was pounding and my neck hurt.  I was still able to bend my chin to my chest but it was painful.  Hubby hopped right out of bed and made a mad dash for the medicine cabinet (which is quite well stocked in our house) to get me the Prednisone.  This has definitely been my worst "attack" since I was hospitalized in April and my poor husband is a wreck.  I woke up feeling a bit better this morning (the joys of steroids) and my temperature is back to normal but I am completely wiped out.  Purely exhausted and there is no energy or motivation to be had.  This makes me so thankful that I am able to stay at home.  No boss to get angry if I call in sick...the worst that will happen is that the daily cleaning & laundry may not get done.  I am so blessed to have a supportive husband and great kids who will pitch in and help out when I'm laid low by my SJS.  

Now on to updates on monthly grocery shopping and the homemade journey.  On Monday I attempted to make a few loaves of bread for use in French toast and sandwiches.  The texture was wonderful but I'm going to have to get used to the fact that the homemade stuff isn't going to be the same size & shape as the store bought stuff.  Does anyone have any suggestions on getting it to turn out more like the store bought stuff?  

The rest of this week will be relatively easy on the homemade front.  Today I will whip up my first batch of homemade laundry detergent.  Tomorrow I need to make some buns for the hearty Italian sandwiches I will be making for dinner.  Friday I will do the next week's desserts...I'm thinking homemade Thin Mint cookies.  Num!  

Here are a few of the crafty projects I've undertaken recently.

Mason Jar Mummy

 This was a super easy project that simply required Modge Podge, a mason jar, sterile medical gauze and googly eyes.  I have a LED tea light in the jar.

Thankful pumpkins

 I still think these would have looked better with white pumpkins but I couldn't find darker letters.

And finally, Aidan's winter scarf for this year

Oh and a grocery shopping update:  I didn't plan well enough in regards to shredded cheese & peppers so when I make my run tomorrow for milk and eggs (in the last week & a half we've gone through 4 1/2 gallons of milk and almost 34 eggs!) I will have to pick some up.  It'll be another $30 added to my grocery bill for the month but still much better than the $600 I would have normally spent in the past!

Doctors orders and homemade mishaps

For those of you who don't know me or are just joining me on my blogging journey, I get meningitis.  Too much.  Well actually, once is more than enough don't you think?  Anyway, it started in early December of last year when I spent four days off work, at home and miserably sick.  Fevers, vomiting, and piercing headaches.  My doctor's PA said it couldn't be meningitis because I was still able to bend my neck. Of course, she didn't realize how atypical I am...a medical oddity if you will.  Less than two weeks later, I was rushed to the hospital via ambulance due to a high fever, vomiting, blinding headache and "shigors" (extreme shaking rigors from the fever).  At that point, I most definitely could not bend my neck.  Within hours, I lost all capability of speech and eventually I lost consciousness and didn't regain it until two days later.  All of the tests turned up negative (see above comment on medical oddities) and I was sent home on ten days of very strong antibiotics.  I was hospitalized again two days later for three days and then a few days after that for another seven due to complications of the illness/treatment/tests.  Finally, all seemed clear.  Until January 22nd that is when the fever, vomiting, shigors and headache started up again.  Another week in the hospital with a whole bunch of nothing on the test results.  Thankfully I saw my Rheumatologist for a regular check up in February and once he heard about my odd cases of meningitis, he realized that I was experiencing a very rare symptom of my disease, Sjogren's Syndrome (SJS).  Apparently meningitis without infection can plague people suffering from SJS but it is extremely rare and therefore none of the doctors treating me at the hospital recognized it.  My Rheumy put me on a new medication that was meant to keep the SJS in remission and lower the symptoms (in addition to the meningitis, I have very dry eyes and mouth along with parotid glands that swell and shooting pains in my nerves due to neuropathy).  Minus the side effects of the drugs, all seemed well until April 1st when I landed back in ICU with another bout of meningitis.  He put me on a new medication.  An anti-rejection drug that organ transplant patients use in order to trick their body into not rejecting the new organ.  In my case, it's supposed to suppress my immune system so that it stops attacking my body which is what causes all of my fun symptoms.  Since I've been on the Cellcept, I have had at least four occasions where the meningitis symptoms have started.  Thankfully, I have a standing steroid prescription and within 24 hours of taking them, the symptoms begin to go away.  That being said, no one likes taking steroids.  Especially not in the doses I have to take them in, as well the fact that I have to take them for long periods of time to wean my body off of them.  

I went in to see my Rheumy yesterday for my check up (these have been every month to two months since my SJS symptoms have gotten out of control) and he has increased my Cellcept dosage to 2000 mg (I am currently on 1000 mg) a day.  Ugh...lovely side effects are coming my way!  I have a standing order for blood work because of course, drugs like steroids and Cellcept can wreak havoc on your body.  Due to my SJS, my white blood cell count (and therefore my immune system) is already naturally lower than a normal persons.  Right now it's hovering at 3.75 but if it hits 2.5 we are in the danger zone.  This increase in Cellcept will likely lower it even more.  If this dosage doesn't work, he will move me to Imuran which is another drug similar to Cellcept.  I have only two more oral medication options before we move to an IV drug that is similar to chemo (on the bright side, that would give me the excuse to shave my head again!).  

There are days where I don't think about my medical ailments at all.  There are times where I freely enjoy life without any symptoms hindering me.  But then there are times where I will have tooth pain, or limited vision due to my dry eyes, or swollen & painful joints and I will think....WHY ME?  This morning, my devotional was spot on though and it is something I will write down to keep in mind always.  "God can remove our illnesses and change our circumstances in an instant-the moment they are no longer needed for His divine purposes.  Until then, or until He takes us home, we can rest in the fact that our illnesses are part of His good purpose for our lives.  God truly uses all things."  AMEN!  He uses our health and our circumstances, whether good or bad, for His glory.  Who am I to argue with that?

Enough of my medical drama....on to the homemade stuff!  Yesterday I attempted to make homemade yogurt in my slow cooker.  I also made cinnamon toast crunch cupcakes.  When you have been on a roll of a lot of new recipes turning out great, it's always such a downer to have a few flops.  Or learning opportunities.....  The cupcakes turned out great...but when it came time to decorate them, the frustration began.  It was suggested that the frosting be piped on.  I have zero artistic skill and have never attempted to use decorating bags and tips.  The first cupcake turned out ok:

  But after that point, the frosting wouldn't come out of the bag.  I've come to the conclusion that the crushed pieces of cereal clogged the tip and I ended up frosting the rest in the plain old fashioned way I normally frost items.  

As for the yogurt....once it was done it was definitely yogurt and thick enough, until I added maple & vanilla to the batch.  It started to thin and got even thinner when I blended some with strawberry for hubby's lunch.  I'm going to research other recipes today and see if I can find a work around to this.  No one in my  house will eat plain yogurt..it only gets used for cooking.  So I definitely need to be able to create vanilla and a few other flavors of yogurt that does NOT have the consistency of milk.  Any suggestions????

Kidism for the day:  Hubby & I recently talked to the kids about finances.  We explained that since I am no longer working, our budget would look and feel very different than before.  We asked them to be understanding as well as helpful in coming up with money saving ideas.  Later that evening, I found our letters notebook (see this post about a notebook my daughter & I use to write letters to each other) under my pillow.  My baby girl had tucked in $2 with a note that said "I have been saving this money for us. Please don't give it back, you need it more than I do."  It can be said that I will cry at the drop of the hat, so it should be no surprise that Ani's little note brought me to tears.  My daughter is so generous and giving.  This is a memory I will forever cherish.  

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.