Reasons to Rejoice

The last couple of days have brought reasons to rejoice and they have almost been forgotten in the busyness of everyday life on the farm.  So now, before I let sleep overtake me, I'll share.

Sunday, for the first time ever, I took full communion in my home church. Previously I had only taken the juice and let the bread pass me by due to my severe allergies.  Sunday we did communion differently, and after working with the pastors, we got something worked out so that I, and others with wheat/gluten/allergy issues, could participate. It was wonderful.  What made me feel even better about it was that there were guests in our congregation who required gluten free communion and we were able to offer it to them. That made me happy.

Also, depending on how you count months, Sunday was the "short" (180 days) 6 month mark of seizure free-ness. Today is the "long" (the 28th of May) 6 month mark of seizure free-ness.  Either way, it's been 6 wonderful months without seizures.  Praise the Lord.

That's a solid 6 months, no matter how you count it.

I get married in 80 days. That's another reason to rejoice.  Now if I could just get everything planned in time...80 days.  That doesn't seem like very long anymore.  It feels like even shorter when I put it into weeks (11ish weeks) or months (2.5ish). But it will be wonderful.

Now, sleeping time, which is another reason to rejoice in and of itself!

Smiles

Yesterday’s post was kind of a downer and I’m really not a negative person overall.  I’d just had one too many really bad day.  Today's post, much better.
There have been so many good things lately too.  I don't mean to focus on the bad, because they I just get grumpy.
For example, on Wednesday, the afternoon sun was coming in the window of the church just right and I sat there and read for class.  It was perfect, as if the window and the sun had been made just for me.
I also have amazing friends.  Friends who have gone out of their way to help me.  I had a friend come over on Thursday night and help me clean.  My room was cleaner after that than it had been in two years I think.  She even helped me vacuum the floor. Rest my house may still be a mess, but my room is clean and the bed even has fresh sheets!
Mom made is safely here this afternoon and we went for lunch at a lovely place (more on that later!) and spent the afternoon trying on wedding dresses.  I was exhausted by the time we were done, but it was maybe just a tiny bit fun. Mom also brought wonderful Canadian treasures with her like School Safe Butter (which trumps amercian soy butter by a long shot) and a gift from my dear friend and mentor Aunt Nancy.
I get fresh vegetables every week from the CSA I share with friends.  I might not always know what to do with them, but I have them.  And they are fresh.
Finally, I'm getting married to the man I love in August.  As much stress as that causes it is so worth it. I love him and he loves me and the wedding is only a day (okay, in our case, two days).  In the grand scheme of things, it's not a big deal.  Just a blip on the radar.  What matters is that we will have all of forever together.
And that's just a small portion of the smiles for today.

Getting Ready

I have spent today in preparation for my 100 day seizure free party, also being called the Psalm 30:2 celebration.  I had the oven up to temperature by 8am this morning and stayed on until almost 3pm this afternoon.  It never sat empty for long.  Anyone around the seminary this afternoon got to sample and everything passed.  The lemon lime bars didn't get taste tested because they are still refrigerating, but everything else seemed to pass.  Here's is a peek inside my "kitchen":

I ran out of cooling rack space pretty early on.  So a couple boxes of canned goods filled in for me.  This is Marmorkuchen (Marble cake?) cooling.

I also ran out of counter space.  An ironing board with a scorch resistant covering is like one giant hot-mat for putting hot pans on or anything that just needs to be out of the way.  In this picture is a tray of chocolate chocolate chip cookies waiting for it's turn in the over,  fudge brownies cooling, lemon lime bars cooling, and then containers of mini blueberry millet muffins and maple date cookies (with Ontario maple syrup) sitting out of the way. 

Now onto general clean-up.  Tomorrow will be market day to get some melon and veggies for the fruit and veggie tray, making whipped cream and then party time!

And we have an ID...

Shortly after my return to Michigan last week, I saw my neurologist.  For those of you who have been following this blog awhile, you are well aware of the struggles I have had with seizures and related neurological concerns.  My neurologist was very pleased with my progress and agreed with me that the medication seemed to be working well. (I'm currently 70 days seizure free for anyone who is counting with me).  However, after reviewing my MRIs, he was concerned about a lesion in my brain.  This lesion was not new, and had been there ever since my first brain imaging in 2008. Some of you may have heard me refer to it as "Spot" before.  Even though Spot was behaving himself, my neurologist still wanted it investigate further, partly because I was concerned about Spot, and partly because no one had ever been able to say quite what Spot was. So he referred me to a neurosurgeon.
I saw my neurosurgeon today, quite a nice gentleman.  I had no small amount of anxiety going into the appointment and am very grateful for the friend who prayed for me in the car before I went in.  The Lord has been so faithful in bringing wonderful friends into my life.  As I left the appointment I was both relieved and frustrated.  I was relieved because the neurosurgeon told me straight up that he did not believe Spot to be a tumor (something that had been mentioned earlier by other doctors) and reaffirmed that Spot was behaving in an acceptable manner.  Then he gave me what I had been searching for since the beginning of this journey: an identity for Spot.
The neurosurgeon is quite sure that Spot is something called an Arachnoid cyst. As far as I can determine, this has nothing to do with spiders, though the thought did bring a smile to my face. The National Institute of Neurological Disorders and Stroke defines it this way:

"Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord."

Based on my symptoms and the onset of them in adulthood, I likely have what they call a "secondary" arachnoid cyst, meaning it formed later in life, rather than prenatally.  To read more about arachnoid cysts, click here.

In many cases, arachnoid cysts are removed, especially if they are on the surface of the brain.  They can grow and put pressure on the brain causing all sorts of trouble.  However, the neurosurgeon I saw today expressed concern about trying to remove Spot.  Spot is located in my temporal lobe, right on the hippocampus.  Getting to him to remove him would involving messing with a whole lot of brain and could make things much worse than they already are. However, he decided to refer me on to a neurosurgeon who specializes in surgery to correct epilepsy and is an expert in removing things such as this.  Thankfully, this particular doctor is back in Ontario, and will be covered.   Evenso, the neurosurgeon did stress that I might not be a candidate for the surgery, based on the location of the cyst. 

So the feelings of relief came from finally having an identity for Spot and knowing that Spot is not likely a tumor and is not malignant.  That is a huge relief as that has been a concern sitting in the back of my mind for two and a half years now.  The frustration is still not knowing, what, if anything, can be done about it, other than treating the symptoms as needed.  For now, life continues as it has, rejoicing in every seizure free day.

 For those of you unacquainted with Spot, he is the little white spot, about 6mm by 9mm circled in red in the image. 

Psalm 30

Some days a picture is worth a thousand words.  Today is one of them.

A2CW: Addicted to Christian Weed

Do you ever start to think about something and then think about something else and eventually end up right back where you started?  That’s a spruce loop.  Some people might call it rabbit trail, but spruce loop is the far better term.   Besides, spruce trees smell better than rabbit poop any day of the week.

Anyhow, we were driving home from some place the other day and I was thinking about a particular time in which I’d gotten lost.  It was a time when I really ought to have known my way, but because of the state my brain was in during that period of my life and because I’d taken some prescription medication that exacerbated the condition, I was in no position to give even the simplest directions (think drunk and high). Anyhow, while I was thinking about that event my brain stumbled upon another event from close to the same time period in my life...

It feels like half a lifetime ago, though in reality it was only about 7 or 8 years ago or so, so about a third of my lifetime ago really.  I hung out with some pretty awesome people that summer.  And by pretty awesome, I mean super awesome.  I don’t know where all of them are now, and that makes me sad, but so goes life. I miss them though and think of them all often.  The ones I have stayed in touch with are mostly married now and some even have children of their own.  There are a few of us left that I know of who are still single.  Often, I wish we could go back to that summer, share what we shared then.

Life was in many ways easier then. We dealt with some pretty crazy stuff that summer, but now, looking back, it seems like such little things compared to all that has happened since then.  That summer, I hadn’t yet learned how to deal with a high school student who was suicidal.  My struggle with an eating disorder and depression hadn’t quite begun yet, though it did follow not overly long afterwards.  I didn’t have a clue what life with seizures was like.  I had no idea what feelings would run through my mind when a doctor would tell me that I was potentially terminal (he was wrong by the way). The struggles we had, although they seemed major then, and some of them were fairly major, all shrink in comparison to everything that has happened since then (and there is a whole bunch I’m not sharing in this public of a forum).  And that’s okay.  That’s not was this is about.  Just a bit of explanation as to why that summer feels like half a lifetime ago.  Think of it has a mini spruce loop.

That summer I was introduced to Christian Weed.  In fact, of the many quotes that graced our quote board (which I almost want to pull out and read, but it’s packed away and I’m tired), one of the few I can remember right now, off the top of my head, is “A2CW” which stood for “Addicted to Christian Weed”.  (The other one I can remember is “Jesus thinks you’re cool” or JTYC), and that is what I began thinking about as I thought about being lost - Christian Weed.

Christian Weed was how we referred to that feeling we got after an all night prayer vigil or a spontaneous session of worship or a time of intense prayer.  It was that feeling of being so filled with the spirit that it overflowed and bubbled out of us, making us laugh uncontrollably or jump and sing with complete abandon, the joy of the Lord that made us completely undignified before our King. That feeling was so addicting, our hunger for the Lord was so strong, that we would do whatever it took to get back to that place and stay in it.  Although there was nothing wrong with that, in fact, there was so much good about it, I wonder though, if maybe perhaps we were a little misguided.

We were addicted to Christian weed. We were searching for one spiritual high after another, always trying to experience that again.  But, like with any drug, no high is ever as high as the first one.  Perhaps it would have been better if we were truly addicted to Jesus, not just to Christian weed.  I’m not saying we weren’t addicted to Jesus, for there is no doubt in my mind that we were all crazy about Jesus.  Our addiction to Jesus is what led us to Christian weed in the first place (Does that make Jesus a gateway drug?), but somehow I think our focus, or at least mine, got shifted away from Jesus and more to towards Christian weed and the feelings that went with worshiping Jesus.  The problem with that is, feelings aren’t always reliable.  When depression took over (and nearly took) my life shortly thereafter, I couldn’t get that high.  No matter how hard I sought it, I couldn’t get the Jesus high.  I couldn’t get high about anything.  I could seek that high all I wanted, but I could never get there.  Instead of seeking Jesus and longing for him, I longed for Christian weed. 

Now, even though my fight with depression has been mostly won (every now and then it rears its ugly head), that habit is sometimes still there.  Sometimes I still find myself longing for a hit of Christian weed.  I search long and hard after it, instead of searching long and hard after Jesus, the only one who can really give me that high.

I don’t blame anyone for that habit.  In fact, I think I have learned a lot from it.  I also cannot say that everyone from that summer had the same experience.  Even though we were all in the same place, we didn’t necessarily have the same experience.  My experience is valid only for me.

Which brings me full circle to where I started.  Sometimes, my brain loses focus and I get lost.  I start searching for what I want instead of what I know I need.  It’s simple, something I’ve known for a long time, but I still can’t always remember it.  The time I was remembering about getting lost (the story at the very beginning of this post) was when I was trying to give someone directions from my high school to home.  I should have known that.  I had known it for a long time, but because my brain was on a binge, I couldn’t do it.  

When my brain and spirit long after a hit of Christian weed I forget that all I really need to do is turn to Jesus and long after him instead.  In the end, He’ll be better than any hit and He will keep me from getting lost. And even when I do get lost, He'll still be there to guide me back to the right path, to get me home even when  I can no longer help myself.

Perhaps it's time to say goodbye to Christian weed and figure out some sort of catchy slogan that communicates an addiction to Jesus instead of to feelings.

And perhaps it is also time to conclude this particular spruce loop.

When G-d's people pray: A story of healing

Two weeks ago I sat in the emergency room, crying in pain,  listening to a doctor I've seen before and trust (she has a stellar reputation), tell me that I had almost certainly torn the rotator cuff in my left shoulder.
Four days later (Tuesday) I sat in the doctor's office as another doctor agreed with the ER doctor (without having seen her notes) -- I had most likely partially or completely torn my rotator cuff.  I'd be in a sling for 2-3 weeks at least and needed to start physical therapy to safely keep my shoulder from freezing up while not doing any more damage to my shoulder.  He prescribed some narcotic pain killers (ick!) to take the edge off of things and told me to follow-up with a doctor in a week so they could do another, more complete assessment (at the time it was still too swollen and painful to do anything with).
During the following week I very carefully and slowly (one handed typing takes me forever) typed out a prayer request to send to some of my praying friends who are further away and I hadn't communicated with in person.  By the time I sent it out, there were about 70 names on the "to" list.
A week later I returned to yet a third doctor for my follow-up assessment.  She agreed with the conclusions of the first two and referred me on to imaging for x-rays and an ultrasound and told me to continue with my physical therapy, as tolerated, but to be careful so I didn't do any more damage until we knew exactly what we were dealing with.
Today, only 3 days after that assessment, I managed to raise my arm all the way above my head. I haven't worn the sling at all today.  I haven't taken narcotic pain killers since Monday (5 days ago). I have a prescription anti-inflammatory cream that I've been using a couple times a day and a heating pad to help with some muscle stiffness. I'm getting more and more use of it back. I even lifted a quart jar of olives from the refrigerator to the counter this afternoon without too much pain.  I still have no strength in my arm when I have it above shoulder height and it is still painful if I move it wrong.  There are still a few motions (external rotation specifically) that are painful and scary.  And now, at the end of a busy day, it is aching pretty good.

The bottom line is this: either three doctors were independently wrong in their diagnoses or something unexplainable in medical terms happened. (A rotator cuff takes 4-6 months to heal, if it's a partial tear.  A complete tear takes significantly longer.  Medically speaking, 2 weeks post injury, I should not be able to do everything that I can do with it today.)
Some one asked me recently if I believed that G-d still healed people today.  I told him yes then.  I'd tell him an even bigger yes today.  I go Monday for my X-rays and ultrasound.  Anyone really think they'll find something wrong?

Big News

So the neurologist called this morning.  When I saw his number on my phone, I pretty near had a heart attack. In my experience, a call this soon after a test is typically not good news.  I ran out of class and answered it, with my hands shaking.  I didn't need to be worried.  The news was good.  There has been no change in my lesion since my last MRI.  Praise the Lord!  It means, that for now, I can relax again.  Unless something changes, I don't have to see my neurologist again until the end of June.  True, we are no closer to knowing what Spot is than we were before, but we know he's not growing and doesn't seem to be misbehaving, and that is very good news!  I pretty much couldn't stop smiling after I got the call.  Now I can stop jumping every time my phone rings.
When I realized the possibility that I could get rather bad news just before Easter I resolved not to tell very many people (including my immediate family), until after Easter, unless the news was super bad. In fact, the only people I had planned on telling before Easter where those who absolutely needed to know...basically, the ones who would be taking me to the neurologist and anybody who would be directly affected immediately (professors whose classes I would miss, my teaching church if it interfered with my work there). I let some people know that this was my plan and was sharply criticized by more than a few of them.  They told me it was selfish and even foolish to think like that.  I disagree with that assessment.  I don't think it was a selfish decision, in fact, it may have been the exact opposite.
Easter is my favorite holiday.  During Advent I could quicker tell you how many days were left until Easter than I could until Christmas. Easter is a happy time and I wanted everyone to be happy for Easter. I didn't want to cloud anyone's Easter with the news that bad stuff was happening in my brain, unless of course it was really bad and waiting until after Easter would make a difference.  I can remember being at camp as a teenager.  Part way through the week I called home to check in.  No one told me anything was wrong.  When I got home at the end of the week, I found out that by the time I had called home midweek, my parents already knew one of my friends had died. They didn't want to cloud my camp experience with the knowledge that friend had died.  Easter is a much bigger deal than camp.  I didn't want to cloud anyone's Easter.  If someone wants to explain how that is selfish, I'll listen.  I won't necessarily agree, but I will listen.
In any case, that's not an issue now, since the news is good.  Hooray Spot not growing! Praise the Lord!
PS:  Easter is only 4 days, 10 hours and 47 minutes away!

Symposium

This is going to be short.  I've been up since about 3:30am and am exhausted.  I was a bit excited for symposium so I didn't sleep well.  We (being me and LDK) left about 7 this morning to drive to GR.  It was freezing rain out so it took a little while, but we made it there safely.  We got there and I checked in.  After checking in I stopped by the info booth and asked about my interpreters.  I was led to the first place where I would be and introduced to my interpreters.  We had a bit of time before the session so I got a chance to converse with them and get to know them a little. Then things got started.
Symposium was the first time I had ever requested interpreters.  In the past I've always just limped along with lip reading and guessing. So I wasn't quite sure what to expect.  I had nothing to be worried about.  They were phenomenal.  I felt like I could actually understand what was going on in both worship and in my workshops. They signed with a mixture of ASL and Signed English (that's how I sign) and that, combined with what I could hear, was a perfect mix. They didn't just tell me words, but expressed emotion, told me which instruments were playing, told me when people were laughing... I learned some new signs, practiced old ones, and felt comfortable doing it.
Now though, I am completely exhausted so I need to make sure I have everything ready for church in the morning, take my shower and crawl in bed, hoping I sleep better tonight than last night.  There might be more on this topic later.

Retreat, part 1: An overview

I'm not sure how many parts this is going to have, but I'm guessing more than 1, since there is a lot to cover from the last week.
To start with, I was at a convent in Dondalson, Indiana.  It was called Lindenwood. I had never been to a convent before so I had no real schema for "convent".  When I thought about convents I thought about "Sound of Music"...not the most accurate picture in the world. The convent turned retreat center was beautiful.  I can only imagine how much more beautiful it would be when there is not snow on the ground.  The building we stayed in had a couple large conference type rooms, a lounge and then a whole bunch of sleeping rooms. We all had our own sleeping room, which was nice.  I like having my own space. The sleeping rooms were simply furnished and reminded me a little bit of hospital rooms in their simplicity: two beds, a desk and chair, and an attached bathroom.
We had the option of connecting to wireless internet in the lobby, using a shared computer in the lounge or going off-grid.  I chose to go off-grid for the week...no internet.  The first day or so was hard, but after that I began to enjoy not checking e-mails or facebook or dealing with the outside world.  It did mean I had to deal with it when I got back though...Not quite sure how I feel about that.
Our days were broken into 3 main parts.  We started each day with a short chapel time before breakfast and then after breakfast we dove into our first discipline of the day.  Each peer group presented one or two disciplines (meditation, prayer, study, simplicity, solitude, submission, confession, worship, celebration and guidance).  We also covered service, but that will get it's own post and we will cover fasting tomorrow morning on campus.  The presentations were about 30-45 minutes, then we were led in a guided experience to help us practice the discipline, either individually (prayer, study, submission, solitude) or with our peer groups (guidance, confession, mediation) or as a large group (simplicity, worship, celebration, service).  After the guided experience we had free time until the next meal or bedtime.
We took our meals over in the "mother house", where the nuns stayed.  The food was simple but good.  I did eat a lot of fruit and salad. The only time I got sick was Wednesday and that was mostly because I was careless.  Gluten is not my friend. It wasn't pleasant, but it was not my worst reaction ever.  Enough that I did get dehydrated and passed out, but overall it was minor.
Tuesday and Thursday were the days that I was weaning off of Prednisone, so I had expected them to be a bit rough (Prednisone withdrawal is never pleasant). Tuesday was about as expected and I slept during most of our free time.  Thursday though (which I expected to be the rougher of the two days, especially after being gluten-sick on Wednesday) was just fine.  No withdrawal symptoms at all. Thank you all for your prayers.
Also, offer praise to our Father who heals -- I am currently at 28 days seizure free. This is the longest I can remember being seizure free in the last 2 years.  Medically, there have been no changes.  The only explanation is G-d.  Which is enough for me.
I'll post more about the retreat in the next few days (and there will be pictures).