Goals for the New Year

Now, I don't normally do New Year's resolutions.  Mainly because I've learned over the years that I just don't keep to them.  But in light of the last year and how much it has changed our lives, my husband and I both decided to make some goals for 2013.  We have made up individual lists and a family list, both of which are still growing and evolving.  We both understand that all of the goals on our lists may not be attainable this coming year, but it is something to strive for.  There are plenty of other goals on the lists that will be easy to attain, so I am praying that we have the strength and will power to stick with them.

Here are a few items from my list:

Volunteer more
Add more healthy foods to my diet (how my picky self is going to do that, I don't know)
Read at least one nonfiction book a month
Be more disciplined in my daily quiet time with God

And a few examples from the family list:

Move towards being more self-sustaining by gardening-vegetables, herbs and fruit
Volunteering more as a family
Continue working on ending youth entitlement


I suppose that the gardening goal should be on my list as well since I will be the one mainly in charge of it.  In theory, gardening is awesome.  In practice, I stink at remembering to stay on top of watering, feeding and weeding. To solve most of the weeding issues, I'll be planting all of our stuff in containers.  I'll add watering as a daily chore for one of the kids as well to help out.

I'm excited about the new possibilities we have ahead of us in 2013 and I'm glad we'll be ringing it in with friends. 

Praising Him

Yesterday morning during my quiet time, I couldn't focus on God or the words in my devotional.  My heart and mind were spinning with worries and anxieties over every day life.  Over things that I cannot control or fix.  As usual, I spent my morning trying to come up with ways to fix it myself.  I am way too self reliant and thankfully God is infinitely patient with that flaw of mine (and with all the others!).  I know that I need to give up control and hand the reins to God but planning and controlling things are what I do best so it's quite difficult to give them up.  Knowing and doing are two totally different things so my prayer this morning was some guidance on how to start giving up control.  As it so often happens, my devotional gave me some insight.

"So when problems are weighing heavily upon you, break free by worshiping Me-in songs, in shouts, even in whispers.  These sacred acclamations decimate the darkness and invite Me into your awareness, brightening the atmosphere around you.  Problems fade into the background while you are engaged in worshiping Me.  Awareness of My presence strengthens you and fills you with joy."

Not only is that a wonderful answer, but perfect timing for me as we plan to go to church this morning.  Praising and worshiping God with our church family always inspires me and opens my heart and mind to God and what He is trying to tell me.  

Come, let us sing for joy to the Lord;
let us shout to the Rock of salvation.
Let us come before Him with thanksgiving.
Let us sing psalms of praise to him.
For the Lord is a great God, a great King above all gods.
He holds in his hands the depths of the earth and the mightiest mountains.
The sea belongs to him, for he made it.  
His hands formed the dry land too.
Come, let us worship and bow down.
Let us kneel before the Lord our marker, for he is our God.
We are the people he watches over,
the flock under his care.
If only you would listen to his voice today!

Psalm 95:1-7

Updates on our Homemade Life

It seems like ages since I've posted anything about how we're doing on our grocery budget in conjunction with going more homemade.  My original goal was to grocery shop once a month and get our budget down to $400 for the whole month.  The monthly shopping hasn't really worked out for us, mainly because we go through so much milk and eggs that I was still going to the store every other week no matter what.  Plus, I get tired out very easily and a full month worth of shopping at once is exhausting to me.  So we're back to the bi-weekly shopping and we're doing pretty good at keeping to the budget.

The past few months have been trial and error on homemade items.  Some are actually more expensive to make than to buy, while others have been great savers for us.  Some of the flops include homemade shells & cheese, taco seasoning and fabric softener.  My biggest money saver is the homemade laundry detergent.  It costs me approximately $0.35 for a gallon and it does a great job cleaning our clothes.  The recipe for it is here.  Other big savers are pizza dough, pancake mix, homemade granola & granola bars, instant oatmeal, English muffin bread, and pasta & pizza sauce.  I also extend our milk spending by buying 1% and when each gallon is half empty, filling the rest up with powdered milk.  We normally drink 1/2% here so no one ever notices a taste difference.  

I am constantly on the look out for new recipes and things to try in order to add to our homemade life.  I picked up this great book up on my Nook from our library called The Homemade Pantry.  It has some great recipes and has inspired me to attempt to do my own pickles and cheese.  We'll see how those work out as I tackle them in the future. 

Christmas Baking

Two days after Christmas and I can't believe how open my days have become.  My two kiddos are down in Illinois visiting their grandparents for the rest of the week and Jimmy's girls will be with us here until Saturday.  I have no holiday baking to complete, no gifts to make....I didn't realize how much the holidays filled my last month or so until it was over with.  So with all this free time, I thought I would take the time to post pictures of some of my baking projects over the holidays. 

M&M Sugar cookies....oh my I have to share this recipe because it was absolutely the best one I made this season.

Candy Cane blossoms-I can't take credit for these....Ani and one of her girlfriends did all the work!

Andes Mint chip cookies

Chocolate chip cookies

Reese's peanut butter chip cookies-these were a big hit with my husband

Egg nog cookies

 Rolo cake cookies

Whopper cookies-for our oldest kid who is a huge Whopper addict

Amish cinnamon bread

 Egg nog cheesecake bars

Candy covered pretzels

White chocolate peppermint cheesecake

Jesus' birthday cake

And finally, an annual family holiday tradition that started with my great grandmother...the cinnamon roll Christmas tree cake

There was also an egg nog cheesecake and some egg nog bread but I forgot to take pictures of those.  Whew, that was a lot of baking and while I enjoyed it, I'm definitely glad to get back to the regular things in life.  

Minus an endless round of doctor appointments that appear to be never ending, my future is wide open so I spent this morning in my devotional/quiet time asking God to help me be a better listener so that I could hear and respond to His plans for me.  I asked for help to be a better steward of my time and resources and He responded in my devotional with this verse:  "In everything you do, put God first, and He will direct you and crown your efforts with success."  Proverbs 3:6  So simple!  I just need to keep praying that I keep God as my first priority and the rest will fall into place. 

Nausea & Me

Over the past year nausea & I have developed a close, personal relationship.  Meningitis, when it's in full swing, causes such a gut wrenching nausea that you get sick until there is nothing left inside your stomach, until the bile has burned your throat and scorched your tongue and all you can do is cry weakly in between bouts.  The poor nurses obviously feel horrible for me as they desperately pump Zofran and Phenergan alternately into my IV as often as they can.  The only relief comes when the anti-nausea medication works in conjunction with the Dilaudid to give me an hour or two of fitful sleep here and there.  I'm not sure if this reoccurring meningitis has given my stomach a predilection for queasiness but I am far more sensitive to certain smells and tastes now.  Foods that I used to love in the past need to be avoided at all costs and the scent of Jimmy's favorite meatloaf in the oven is enough to make me gag.  

Then there's the chemo.  For me, on the pill form, it causes a low grade nausea.  Something that's just stewing in my stomach and waiting for the right moment to flare up in full.  It's like that slight, but very annoying, headache that buzzes in the back of your head all day.  Now that I'm currently waiting for insurance approval of the IV chemo, I can only imagine that the nausea will be worse on a stronger dose like that.  We will see.  

In the last year I have also developed coping mechanisms to handle the nausea.  I have found certain foods that seem to settle my stomach and my amazingly wonderful husband is quick to run out for them at the first sign of nausea.  I was not blessed to have children with Jimmy but I just know that he would have been that husband that ran out in the middle of the night to get me Starbursts, Pringles and a container of cream cheese.  After the first bout of meningitis, the only food that I could eat was cold food such as a Frosty from Wendy's, salads, cottage cheese, pudding or yogurt.  It took nearly a year for me to start drinking hot coffee again and forget about eggs...I used to eat them almost every day but the idea of a scrambled egg now...blahhh!  

Meghan's Nausea Relief List

   1.  Zofran-better living through chemistry!

   2.  A Wendy's Frosty

   3.  A mocha frappe from McD's (are we sensing the cold, sweet, chocolately theme?)

   4.  Laffy Taffy's

   5.  A Slim 4 with cheese from Jimmy Johns

I can't tell you how many times Jimmy has dropped everything and ran to get one, or all, of these items for me.  I am one lucky woman!   

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!
  

Catching up

As usual, time can get away with you when you've been spending too much of it in the hospital.  Last Monday was a very normal day for me....running errands and finishing up (thankfully!) our Christmas shopping.  We had our typical evening of dinner and cheer practice and my last memory is of cuddling in bed with the hubs, both of us reading and then me deciding I was sleepy so closing my Nook and heading off to the Land of Nod.  The next thing I know, I wake up in an ambulance.  The nice EMT was trying to get me to speak to him and tell him what my symptoms were...poor guy, I was of no help.  He tried tapping a vein because he could tell I was in desperate need of fluids but I was so dehydrated there were no veins to be had.  Talk about a twilight zone experience...to go from sleeping to an ambulance with zero recollection as to how or why you were there.  Once we arrived at the ER, I was put in a room right away and actually got a new nurse and doctor for once who weren't in on my bizarre medical history.  The poor nurse was trying her best to get a vein....but even the phlebotomist couldn't get one.  They happened to tap one but thought it was bunk because it didn't draw blood.  Thankfully I convinced them to flush it and try to use it for fluids because their next step was some sort of femoral shunt.  Needles?  In new places?  Without putting me to sleep?  No thanks!  Finally my husband arrived to clear things up for me.  Apparently, after falling asleep I woke up, told him to get me a bucket because I was going to be ill and then immediately slid down into the ugly abyss that is meningitis.  I was unable to speak almost right away, only being able to grunt and my arms curled in towards my body uselessly.  Jimmy put socks and shoes on me but once he stood me up, my knees buckled, I collapsed and he couldn't get me back up so he had to call the ambulance.  This was the most ill I had been in quite awhile and that is saying something!  I spiked a temp so they put me in a lovely torture device that was a mattress pad connected to a machine that made it ice cold.  And then they put me in IMC, where they usually stick me if I am conscious.  I was hospitalized until Thursday.  They treated me with the normal rounds of anti-nausea meds, Solumedrol (IV steroids), Tylenol for the fever and Dilauded for the pain.  I was happy to see that I had one of my favorite doctors on rotation....she is actually studying to be a rheumatologist and she's fantastic.  I also had a few visits from my neurologist and was able to talk him into getting me tested for Anti-NMDA-Receptor Autoimmune Encephalitis, a rare disease I recently read about that fits a lot of my symptoms to a T.  While I'm waiting for that lab to contact me (of course it can't be simple...it has to be a special lab that takes a special encephalitis panel that costs gobs of money), he also put me back on Lyrica and MY rheumatologist doubled my chemo dosage.  He is also in the process of trying to get me approved for IV chemo through my insurance company.  

After all the medical drama, we still had cheer Regionals this past weekend.  Yet again, I am reminded of how blessed we are in our friends and family.  Some of our friends brought dinner to Jimmy & the kids while I was in the hospital and prayed with them.  Another friend came over on Saturday to do Ani's hair and make up for the competition because I was in no way up for it.  And finally, a wonderful mom from our cheer team picked Ani up, took her to the competition and made sure to send me lots of pictures and updates!  

My husband has been amazing through all of this as usual.  He won't let me lift a finger.  He has been cleaning, cooking, doing laundry and running the kids around.  He soldiers through it all...even when I say "Aren't you going to put fabric softener in the wash?" or when he adds two cups TOO many flakes to the instant mashed potatoes.  He has this diabolical plan to keep me on the couch and in this house completely for the next month.  I tried explaining that I will need to get out just for mental health purposes....not to mention I have things I have to do!  

Cheer tonight, Christmas baking to be done, knitting and gift making, prepping food like frozen dinner rolls, breakfast burritos & meatballs, a second opinion appointment on Wednesday in Ann Arbor that my bestie is so kindly taking me to, volunteering for the Jaycees on Saturday morning and of course, no one and NOTHING is keeping me from seeing The Hobbit this weekend!  Truthfully....I can do about two of these things a day and still be a slug on the couch..he is going to have to get used to it! 

Project: Ditching kid entitlement in our home

After owning my Nook tablet for over a year, I finally got around to figuring out how to read library books on it.  BAZINGA!  Maybe that will cut down on my trips to the library!  Anyhoo.....when I was first browsing my book options, I found a book title that captured my interest. The book was called Cleaning House: A Mom's Twelve-Month Experiment to Rid Her Home of Youth Entitlement and the description blew me away.  

"I had a sobering epiphany.

“I think I’m raising little socialists,” I said, “the serve-me kind that are numb to the benefits of ingenuity and hard work, the kind that don’t just need to be taken care of—they expect it.”

And why not? That’s what I have apparently been raising them to expect. In that moment and in the days that followed, I came to realize that not one of my five children knew how to do their own laundry. Not one could clean a bathroom—I mean, really clean it. Not one could cook, serve, and clean up after a full dinner. I wasn’t sure my eight-year old could even cut his waffles."

Guilty as charged!  Our youngest is 11 1/2 and at the time I read this book, I was still making up the dinner plates and cutting the meat for three of our four children.  The book was a real eye opener and we've started instituting some of the author's ideas in our home.  

 My first step was to have them make their own plates up for dinner on Sunday night.  As is usual after a long holiday weekend, Sundays tend to be leftover night.  It was SO nice to sit on the couch while they made up their plates, heated them in the microwave and cut their own meat.  My second step was to enforce dishwasher loading.  Up until this point, everyone in our family (and I mean EVERYONE minus myself) would put their dirty dishes in the sink even when our cute little clean/dirty pug magnet said dirty.  The last thing I've instituted so far is daily lists.  Each day the kids will find a short list taped to their door of tasks that they need to complete.  For instance, Ani's list today is as follows:

-Study/do homework

-Dust the living room/dining room

-Practice cheer routine (regionals is next weekend)

-Read devotional

-Read your book for 30 minutes

 Making the list simplifies so many things.  First, my memory isn't what it used to be so there are times where I will forget what I want them to do that day, or forget if I asked them to do it already, etc.  Second, this makes them a bit more independent and responsible.  They know what they need to do and they can get the satisfaction of crossing each item off their list once it is done.  

 There are so many other ideas that the author gave and I am excited to try more out in the next few months.  Here is to hoping that this project will enrich and empower our kids to realize that they can do anything they set their mind to! 

Family, food, fun and all that jazz

I've been slacking on keeping up with my blog lately but I will shamelessly use the chemo to excuse the absence.  Truthfully, the treatments seem to be falling into a pattern.  I take it on Friday night and am out of the running until Wednesday morning.  I spend most of my time in either bed or on the couch, dozing or full out sleeping my days away.  By Wednesday I am almost back to normal though any activity (such as grocery shopping) is bound to wipe me out and require a three hour nap afterwards.  

Beyond the treatments, the last week and a half has been full of parent/teacher conferences, cheer, a girls night out (dinner and the final Twilight movie with my bestie), lots and lots of food prep and baking for Thanksgiving, the actual holiday, putting up the Christmas tree, our annual tradition of watching The Grinch with the family, a 16th birthday party for our teenager, and a date with my hubby.  Lots of fun, good food and even better company was had.  

I made Pilgrim cupcakes

An Irish Cream cheesecake

And two pumpkin pies for the weekend.  

We always put our tree up on Thanksgiving.  The two youngest help daddy sort the branches and spread them out for ease of assembly.  After dinner, we let them have at the ornaments.  Of course...we always have to go back and do some rearranging!

Amazingly enough, everyone got along fabulously this weekend!

I hope everyone had a wonderful Thanksgiving!

Life after the first treatment

I settled in last Friday night with some Laffy Taffy's (of course!), a few past episodes of the Duggars and my first chemo treatment.  I was nervous about how it would go so I escaped into someone elses crazy life for a bit.  About halfway through Michelle's birthday surprise show the side effects started.  I was extremely dizzy (good thing I was on the couch!) with a yucky taste in my mouth.  My lips were tingling and soon, I was just flat out exhausted.  I crawled into bed about an hour later and then the nausea began.  Thankfully, due to the advice I found online to take the chemo at night, I was able to sleep through most of the nausea.  I spent all day Saturday in bed....sleeping and reading while occasionally cradling a puke bucket (sad to say, this has become normal for me), but thankfully the nausea didn't get too out of hand.  I was able to eat bland food most of the weekend (couldn't manage dinner Sunday night but that loss of calories is certainly not going to hurt me!) and keep it down which was much better than I expected.

Fast forward a few days and it's the middle of next week, two days away from my next treatment and I'm starting to feel back to my pre-chemo self.  If this pattern holds, I'll have two days of feeling well each week and the rest spent in bed.  I hope my body is able to "push through" the side effects like some people I read about and that this isn't a lasting problem.  We are cautiously optimistic that we've seen the worst of it but I was told it could take two to three weeks for the side effects to fully kick in, waiting until the chemo was built up in my system so we will see.  For now, we've rearranged most of our social calendar to allow us to stay home on the weekends and we will just play the waiting game.

"Taste and see that the Lord is good.  Oh, the joys of those who take refuge in Him!" Psalm 34:8

Bzzzzzzzzzzzzz

To buzz it off or not to buzz it off?

Ahhhh the days of my youth.  Back when my main consideration in a hair style was how much time it took me to do it...and I prefered NO time.  :)  This was my bestie and I...ohhhhh about 12 or 13 years ago.  Back when doing my hair consisted of pulling out the clippers once a week and shaving it all off.  I loved it back then but I must admit, I am pretty attached to my hair now. My husband is a big fan of it as well.  So when I got the call that I had to start chemo today....that was one of my first thoughts.  Should I just shave it off and save us the devastation of watching it fall out one clump at a time?  Really, that is such a minor consideration in the scheme of things but such is the human mind...grasping on to small details when the big picture is too overwhelming.    

30 Days of Thankfulness

In light of my recent vent on living with chronic illness, I feel I need to balance myself out by thinking of the many things I am grateful for.  I've been posting daily on FB about things I'm grateful for so I'll try not to be too redundant here.

One of the prevailing themes I've been seeing in my bible and devotional time in the last month is that God has given me this illness for a purpose.  He will use it for His glory and for that I am so grateful.  I can honestly say that I am thankful for this illness because it has opened my eyes in so many ways.  After my first bout in ICU when I lost consciousness for a few days, I woke up and almost immediately thought of baptism.  It had been nudging at my heart for quite some time but I kept putting it off.  I realized that God had spared my life and that I needed to be obedient to Him.  Tomorrow is not promised so we must live His plans for us TODAY.  The other realization I had was how blessed we were in our friends and church family.  Meals were provided for us for almost a full month during the beginning of my illness.  Friends came over to clean my house and do my laundry.  They drove my children to Illinois to spend Christmas with my parents.  They prayed, they visited, they listened and they loved.  My husband's bible study group did a phone prayer conference and prayed for healing & peace.  Our church lifted us up in prayer and offered their support as well.  It was mind blowing.

I am also thankful that God brought Jimmy into my life.  Meeting Jimmy brought me back to my faith and strengthened my walk with God.  He is the most amazing husband I could have ever wished for.  He is kind, caring, loving, generous, loyal and he takes care of me in every way possible.  His entry into my life also brought me two wonderful daughters that I feel so blessed to be able to love and care for.  I had never imagined having four kids but our family feels perfect and complete whenever we're all together.

And finally for today, I am thankful for my best friend Lea.  We've had a few separations over the years but she keeps finding her way back to me and for that, I am eternally grateful.  She is the sister of my heart and soul.  She would do anything for me and I would do anything for her.  She even shares her fantastic parents with me and I love them dearly!  She has been my strength during this illness, my voice of reason and my rock to lean on.  She is a second mother to my kids and has cared for them time and again while I go to the hospital.  Lea has a huge heart and I am so glad she shares it with me.  Love you girl!

 

Just a little DIY project.....

I have a confession to make.  We have an ugly fridge.  It's ancient, hideous and an odd shade of almond with plenty of wear and tear.  But....but it works just fine so we have never been able to justify replacing it.  We've just lived with the ugly.  Until I found Pinterest that is.  

Now, until I had gotten sick and stopped working, I avoided Pinterest like the plague because everyone told me how addictive it was and I just didn't have the time to be surfing it all day.  Once time became something I had in abundance, I became an addict.  And it was there that I found the cure for my ugly fridge.  

Chalkboard paint.  

Genius I tell you!

Here is our homely fridge

 For a $10 container of black chalkboard paint I was able to make it look like something new and unusual!

 I also found a really cute idea on Pinterest to paint frames from the dollar store and add magnets to the back to make your fridge look a bit neater.  I still have a few more frames to paint but this is the finished product.  Now I just need to tackle repainting the ugly walls in the kitchen and this area will look sooooooooooo much better! That is a project for another month though....holidays are coming and it's time to focus on the homemade goodie bags I plan on making for friends and family.

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!

There is a revolving door......

At the hospital for little ol' me.  You know it's sort of a mixed blessing when you get into ER and both the nurse and doctor recognize you.  The good side is that you don't have to go through your weird medical spiel all over again.  The bad side is that this means you've been there WAY. TOO. MANY. TIMES. 

I was admitted Saturday night for another attack of meningitis which is pretty scary considering it's only been less than two weeks since I was in there last time for the same thing.  Also, I was currently on 20mg of Prednisone which is supposed to keep the meningitis at bay.  Obviously not.  The only blessing of this trip is that they decided not to do a spinal tap so at least I'm not in a lot of pain now that I am home.  I was released this afternoon and it was so great to come back home.  I have a round of follow up appointments next week and hopefully that will get me closer to my referral as well as on some new meds that will do a better job of keeping the meningitis at bay.  

In the meantime, I am trying to be positive.  Some of you may know that due to this illness, I missed Christmas, New Years, my husband's birthday and my birthday with my family in the last 10 months.  We were supposed to carve pumpkins on Sunday and that hasn't been done yet. I highly doubt I will be up to doing it before Haloween itself.  I was also supposed to be the room mom for Ani's Halloween party tomorrow and I definitely won't be able to do that.  And finally, this will be the first time ever that I will not be able to take my kids trick or treating.  :(  

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?

Back to reality

It is so very odd to be able to say that I have to adjust to life outside of the hospital.  It's even odder to actually be used to this cycle of hospitalizations and returns to normalcy.  I told my husband today though that God has a purpose for this or else He would cure me so I need to see the bright side of things and to make the best of the situation.  Today's bright side is being back to MY life.  I was released from the hospital last Thursday but my mom was in town and that just doesn't mean normality here.  You know how it is when you have out of town guests....wanting to make sure they are always comfortable and don't need anything.  I understand my mom was here to help me out but you just can't break that learned habit.  My mom left for Illinois this morning and life is starting to settle down around me again, like the comfortable blanket it was before the latest meningitis disruption.  

It will be a relatively quiet week (due to the vociferous shouts to TAKE IT EASY from so many) but I am so glad to have some of my routine back.  This happened to be my monthly grocery shopping week so I will have to be wise and stretch out the shopping through next week so that I don't overdo it.  I do have some doctor appointments this week. Follow ups from the hospital and flu shots for the kids (due to the fact that I'm immunocompromised everyone here needs to have their flu shots in order to avoid bringing gunk home to me).  Other than that, it's just relaxing and preparing for our annual football party which will be this Saturday.  Since I have wonderful friends, everyone is going to be understanding and ignore the less than stellar cleaning.  :)  We have cheer tonight, youth group Wednesday night and Friday night is my church's monthly craft night where we can bring our individual crafts and get together for some fellowship.  

Today though I tackled the Sam's Club portion of my shopping.  I was sad to see that the only yeast I could buy there was instant, which I just don't nearly use as much of as regular yeast.  A good find though were the 5 pound bags of shredded cheese.  We go through a lot of shredded cheese in a month so I bought one of cheddar and one of Mozzarella and then just separated them out into 2 cup portions to freeze.  

Here is today's haul of cheese.  Obviously, the fancy shredded cheddar gave me more baggies than then Mozzarella but this should still last us until next month.  

I'm baking English muffin bread this afternoon because I've been seriously craving English muffins.  I hope this turns out.  After a little lie-down I'll head to my doctor to be told yet again that I'm a medical oddity, and then after dinner tonight my baby girl and I will go visit with a friend who just got back from vacation before we go to cheer.  

Here's to hoping the rest of you have a happy, uncomplicated week!

Revenge of the Meninges.....

One thing I have learned with this disease....never assume.  Never get complacent while your symptoms are in remission because you never know when they are going to rear up and bite you in the tush.  This week for example.  I had many things to tick off my to do list.  By Monday afternoon, I had our bread baked (and somehow managed to break the glass plate in our microwave, go me!) but I started to feel quite blah.  By 2 I was on the couch, by 2:15 I was shaking with a headache and a fever and by 2:45 I called my husband home.  By 5 I was in the hospital getting my 8th spinal tap of the last 10 months.  My temp was at 103.  The nausea and vomiting began.  Sure enough, meningitis strikes back...AGAIN.  This was my 5th bout since mid December.  I was moved into an ICU room by 11 and there began the round of wake ups for neuro and vital checks.  The biggest blessing with this stint of meningitis was that it didn't seem to affect my brain as much.  What a blessing!  I always knew who I was and where I was at all times. 

I was in ICU until Wednesday and then moved to a "general population" room as I like to call it where they could stop wearing the gowns and masks.  The MRI was pretty unpleasant.  About half way through I was sure I was going to be ill so I made them stop.  I really dislike MRI's under the best of circumstances but when you are coping with nausea and headaches from meningitis as well as a headache from the spinal tap, it's no walk in the park.  

The two best things about being ill is all the prayers & love that pour out to us from family, friends and our church family, as well as the lovely visitors I get in the hospital and at home afterwards.  This time around an old old old (yep David, you are OLD!) friend came up to visit whom I haven't seen in years.  He came bearing chocolate ice cream!  :)

Tuesday had been miserable with headaches and pains.  By Wednesday night I was able to wean off all of the pain meds which is wonderful.  Thursday morning I was raring to go and the doctors were so surprised (this what happens when they give you intravenous steroids that would make a football player happy) but they released me!  

Now the recovery journey begins.  Building up my energy, getting back into sleeping at home without hospital wake ups but with other distractions like husbands and dogs, learning to take it easy (which, ask anyone who knows me, that does NOT come easy to me) and to just relax.  

I'm looking forward to a weekend of nothingness.  I'm knitting my boy a hat, and will work on some other projects that only require me to sit on my rear and relax.  I am hoping next week I can start to (SLOWLY...so don't yell yet Lea) get back into the swing of things.  Here's to hoping we can keep the meningitis at bay......

DIY Wednesday

Today I decided to tackle two projects....an organizer for our keys and a jewelry organizer for Annika.  She owns plenty of jewelry (that she either suckered me into buying or her Aunt Lea into making) but rarely wears it because it's all tangled up in a box on her bookcase.  I thought having it sorted and visual would help her when she's getting ready in the mornings.  

Now, to be perfectly frank, today was definitely not a good day to begin any DIY projects.  After my relapse last week, my rheumatologist has decided to keep me on steroids until further notice.  So, in addition to battling The-Cold-That-Won't-Leave, I also get to struggle with hunger and 'roid rage.  I spent the majority of my day today in a steroid-induced fog of extreme irritation.  The woman hogging the aisle at the grocery store irritated me.  The woman standing at the self-checkout whistling at the cashier to get her attention was enough to make me go nuclear.  So trying to create something today may not have been my best decision.  

The first frame I tried to use split on two corners.  I tried gluing it.  No go.  I tried to nail it together.  Again, zip.  So I moved on to a new frame:

 I added cup hooks and then spray painted the whole she-bang.  It took two coats and another one on the hooks before it was done.

Here's to hoping Annika actually makes use of it!

My next project was to create a key organizer to hang by our front door.  The main purpose for this organizer is actually for my son's lanyard.  He tends to forget his ID and it's a requirement to get on the bus, to wear in the school, etc.

In this case, I used an 8"x10" wider framed black frame and added cup hooks that I had already spray painted black.  I used some subway art that quotes one of my favorite hymns to put inside the frame.

Unfortunately the glow of a job well done was not enough to clear out that ugly 'roid fog.  Fortunately for my sake, my husband was able to do so by mimicking Dorie (from our favorite movie) and asking me "Who's Mr. Grumpy Gills?" 

An old family recipe

Some of my fondest early memories include being in my great grandma Eklund's kitchen baking chocolate chip cookies.  My paternal great grandmother was like a fairy tale grandma with rosy cheeks, sparkling blue eyes and a wide smile that was always ready to shine.  I am so blessed to have had her in my life and one of my favorite ways to keep her memory alive is to make her famous Swedish pancakes.  In addition to her great chocolate chip cookies, great grandma made the most amazing Swedish pancakes.  My parents still have an index card with the recipe written in her spidery script and someday I plan on framing that for my kitchen.

Now both sides of my family are Swedish (and quite proud of it) and so I grew up on food like Swedish pancakes and fleckspancakka (a pancake-like breakfast casserole with bacon in it) and praying a Swedish prayer with every big family meal.  I assumed everyone else in the world knew the delight of eating the paper thin, buttery Swedish pancakes.  I also took for granted the level of work involved in creating that buttery perfection.  My great grandma passed her knowledge down to my dad and so even after she went home to be with Jesus, my dad would spend hours at the stove making Swedish pancakes for me.  Once I became an adult and attempted to make them myself, I realized just how much work they were.  It took me years to perfect the thinness and to avoid tearing each one as I flipped it.  Twelve years into my pancake making journey and I finally have it down pat.  I've also passed my love of Swedish pancakes on to my children.

 Eklund Swedish Pancakes

4 tablespoons flour

4 tablespoons sugar

3 eggs

1 cup milk

1 stick of butter, melted

First add the flour, sugar, eggs & milk.  Whisk them to make sure they are well mixed before you add the butter.  Heat your skillet.  I use 1n 8" pan and I usually spray it with cooking spray.  Once you add the first pancake, you won't need to worry about that anymore because they are so buttery.  Add the butter right before you are ready to start cooking the pancakes and whisk well.   Finding the right amount of batter to add is going to be trial and error.  I use a large ladle and fill it about halfway.  Once I add the batter to the pan, I swirl the pan to coat the entire bottom.  You want a thin covering of batter in the pan.  Once the edges start to brown, carefully slide the spatula under the pancake and flip it.  

The finished product should look something like this.  

I hope you enjoy these as much as our family does! Skål!

A weekend in retrospect

I suppose that some could argue that since I stay home, every day is a weekend day for me (ask any SAHM and she'll tell you the truth!) but in reality, the weekend to me is the time I get to spend with my family.  I do enjoy some of the quiet time I get during the weekdays but I much prefer having my brood home.

Friday night is pizza night in our family.  I make my pizza dough from scratch (I make enough for four pizzas so I only have to make it every other week) and we nosh on cheese (for the girls & I) and pepperoni (for the boys).  Sometimes we do movies on Friday nights, others it's game night.  This past Friday night was girls night in for my baby girl and I.  We did manicures, pedicures and wallowed in girlie emotion while watching Sweet Home Alabama.  I love the fact that Annika is getting old enough to enjoy non-animated movies with me.  We've watched Diary of a Mad Black Woman (and she learned what sort of treatment one should NEVER put up with from a man), The Boy in the Striped Pajamas (where we sobbed together and she learned of the hatred some humans can harbor for others), and The Help (where she learned that it wasn't too long ago in our American history where humans were treated less than human solely based on the color of their skin).  I love how she asks questions and really thinks about my answers.  It's amazing to me to see the young woman she is growing into.  

Saturday was a pretty quiet day.  Hubby had a big Honey-Do list and Ani and I had shopping to do for Halloween costumes and craft items to stock up on.  Of course, in the fall, Saturdays are also college football days but we managed to fit in a viewing of The Avengers in between two key games.  I almost regret not seeing that in the theater!  I  had been pretty unimpressed with Thor, Captain America & the second Iron Man so I stayed back from the theater viewing back in May.  

As always, church was uplifting and refreshing on Sunday morning.  I love our church.  Even though it could be termed a "mega" church, I love the familiarity there, the friendliness and the diversity.  We have an amazing church family.  After church on Sunday, Annika & I headed downtown for our first viewing of ArtPrize 2012.  In the years since I've moved to Grand Rapids, it truly has grown into a city I am proud to call home.  When I first moved here, I was appalled at the lack of a big city, the unimpressive food choices and lack of museums and big zoos.  The restaurant selection in town now is wonderful and our city outdoes itself with ArtPrize, which just happens to be the world's largest art competition.  There are art pieces on display on the city streets and in several of our downtown buildings.  Here are just a few pictures of the exhibits we saw this weekend.

And our very favorite piece, Song of Lift

It spun around, with the little mechanical "birds" lifting their translucent wings with a wonderful light and musical show included.  This piece is one of the top 10 and will hopefully win after voting is completed.

I finished off my Sunday with an awesome fried chicken dinner, football on the couch with my hubs and way too much time on Pinterest plotting out my next few projects.  I hope everyone else had a weekend as wonderful as mine!