Health Update

Someone asked me awhile back how my health was doing because I hadn't said anything about it recently.  She wondered if that meant I wasn't having any more seizures.  I wish that were the case, but it is not.  So this post will be a health update on me.  If that doesn't interest you, you might not want to read rest of this post.  And that is fine with me.
Seizures
My last seizure was the end of August, so almost a month ago.  The one before that was in March.  Both times I could have predicted that a seizure was likely to happen well before it happened.  That's both a good thing and a bad thing.  It's great because it means that I know my body and I know what is likely to trigger a seizure and what my "perfect storm" is when it comes to seizures.  It's not so great because it means that I have had enough seizures now that I know what my "perfect storm" is...  I'll be seeing my neurologist later this week and we'll see if he has any astounding insights to add.  Maybe (fingers crossed) we'll be able to start reducing some of my medication - I'm still on the same amount that I was when I was nine months pregnant with Bean...

Headaches
The headaches are still there.  Most days the headache hangs out around a 3 or so, though about a week ago it stayed at a 7-8 for most of a week.  That was not a fun week.

Allergies
If I don't eat anything I'm allergic to, I'm good. :) I haven't used an EpiPen since last spring sometime, so this is a good sign.  Bean however is showing some signs of a potential dairy allergy which doesn't make me happy at all.

Hearing
yup, ears are still broken.  It makes life amusing sometimes.  Today after school Littlest Brother was telling me he was going to the bush to fell trees.  He told me that if I needed him he'd have the tractor and chainsaw.  What I heard was him telling me that if I needed him to follow "vector chainsaw" which only made marginal sense, but sounded way cooler.

Other stuff
The newest "health" thing going on is something I call "sunburn syndrome".  So far no one actually knows what it is.  Everyone except my neurologist thinks it is a neurological problem - my neurologist referred me to a dermatologist.  So here's what it is:  Basically my body feels like it is sunburnt over a large portion of it at any given time.  It actually started when I was in highschool, but at the time would only happen 1-4 times a year and for less than 24 hours at a time.  Since about April/May it's been pretty constant.  It's annoying and irritating, but not the end of the world.  Combined with that has been a lot of deep muscle/bone/joint pain.  If you know what it feels like to close a car door forcibly on your arm, you have a general idea of the kind of pain - a kind of deep aching pain that you can't touch because it's so deep.  It strikes at anytime in anyplace.
The pain and the burning seem to go hand in hand, inasmuch as when one is worse, so is the other.  OTC pain relievers don't really do much for the pain or burning so I've pretty much given up on them.  Most days I just grin and bear it and try not to complain about it.
The doctor gave me one drug to try and calm my brain down so I wouldn't hurt as bad and it turned me into a narcoleptic zombie or something...all I wanted to do was sleep.  I couldn't form coherent thoughts, carry on a meaningful conversation or really function at all.  And it started affecting muscle control in my hands.  So I stopped taking it (with doctor's permision of course).  So then we tried another one and it pretty much had the opposite effect.  I didn't sleep at all.  Neither did Bean.  And my headaches were horrible.  I cannot function without sleep (one ingredient to my "perfect storm" is a lack of sleep) and I cannot function without sleep when I have a baby who is also not sleeping.  So I stopped that drug too.
I'm not sure what the next plan is.  What I'd really like to know is what this is and what is causing it. If you are the praying sort and want to pray for me, this would definitely be an area of concern - both the not knowing what is going on and the dealing with the pain part.

That's the super quick basic health update for those who are wondering.  I'll try and do a general life update sometime soon too.

Smorgasbord Sunday

Smorgasbord, as defined by dictionary.com is:

1. a buffet meal of various hot and cold hors d'oeuvres, salads, casserole dishes, meats, cheeses, etc.

2. an extensive array or variety

I've decided to make Sundays a smorgasbord of stuff...pictures, writing about prayer points and plans.  Just an extensive array. :)

Firstly, the hospital trip that I talked about last week and then corrected to say wasn't happening because in my mind I'd skipped a week is happening this week.  Here's what I wrote last week without the edit.

This coming week we have one big appointment:  On Wednesday I head to London for an EEG (brain wave measuring thing) EEG's are fairly routine for me and this one is to monitor how my brain is doing in light of the medication switching that is happening and to follow up on Spot.  I'm thankful it's just an EEG for now and not an MRI, since I hate MRI's.  Prayers for safe travels and no snow storms would be great. (our last appointment in the city was a snow storm nightmare)  Also pray that the EEG would show good things about my brain, since I'm rather attached to it and we really don't want any more issues popping up.

The forecast for this week is predicting 10-15cm of snow for Tuesday and 5-10cm for Wednesday with temperatures hovering right around freezing, so there is a bit of concern about weather and travel.

For all of you who prayed for my back, it is doing much better.  It only hurts occasionally and typically after I do something silly like lift feed bags on my own. Much better than last week!

We sang this beautiful song in church this morning and it really touched my heart.  Our G-d truly does hide our souls in the cleft of the rock and covers them with his hand.  Here are the lyrics:

A wonderful Savior is Jesus my Lord,
A wonderful Savior to me;
He hideth my soul in the cleft of the rock,
Where rivers of pleasure I see.

Refrain:

He hideth my soul in the cleft of the rock,

That shadows a dry, thirsty land;
He hideth my life in the depths of His love,
And covers me there with His hand,
And covers me there with His hand. 

A wonderful Savior is Jesus my Lord,
He taketh my burden away,
He holdeth me up and I shall not be moved,
He giveth me strength as my day. 

With numberless blessings each moment He crowns,
And filled with His fullness divine,
I sing in my rapture, oh, glory to God!
For such a Redeemer as mine. 

When clothed with His brightness transported I rise
To meet Him in clouds of the sky,
His perfect salvation, His wonderful love,
I’ll shout with the millions on high. 

And a cute picture of a sleeping baby to close this Smorgasbord Sunday out:

He's so angelic looking when he's asleep...

4 years...

Four years ago I sat in my college dorm room talking to a friend online.  Suddenly the room felt funny.  I told my friend that I didn't feel very good.  That was the last thing I said to her.  When I didn't come back online or respond to her messages she called a mutual friend who lived in my building (the friend I was talking to lived across campus) and asked her to check on me.  The friend who lived in my building found me on the floor of my dorm room, in a semi-conscious state.  What we didn't know then was that I had just had my first seizure. All we knew for sure was that my head hurt and I was tired.  I went to bed and my friend checked on me frequently throughout the night.  (What can I say?  I have some pretty awesome friends). 

The next day, when hanging out with some friends I had a seizure.  It was witnessed and there was no doubt as to what it had been.  We headed to the hospital and my journey began.

The initial prognosis was not good.  The initial scans of my brain showed a spot that they believed to be a tumor and a very large blood vessel that they thought was going to explode.  I was told that I was living on borrowed time. The large blood vessel in my brain shouldn't be that large and they figured it would rupture sometime soon.  I was started on anti-seizure drugs as well as painkillers (I had a wicked headache that would last for months).

I was referred to specialist after specialist and my life consisted of waiting for appointments and getting conflicting reports from them. In between, I had seizures, often half a dozen or more a day, and I slept.  

Four years later a lot has changed. In the summer of 2011 we finally got a solid ID as to what Spot is. I'm on medication that controls the seizures for the most part, and have adapted to life with seizures, as well as anyone could. 

But there are things that they don't tell you about living with a chronic illness. They don't tell you how it will impact every aspect of your life.  If affects where your go or don't go for school.  It affects whether or not your can work and if you can work it affects what kind of work you can do. It affects your family.  It affects your mate. In short, it affects everything. 

Over the years I've tried to explain to people how it affects me.  The best explanation I've found so far is something call the "Spoon Theory".  I encourage you to click on the link and read it.  It applies not only to how the seizures affect me, but also to how my mental illness affects me.  Both limit the number of spoons I get each day. 

Four years ago I had no idea where I'd be. I have no idea where I'll be four years from now. 

But that is life. And that is my life.

Interlude

There will be more wedding pictures posted, but for now, there is an interlude accompanied by a prayer request.
On Saturday evening, while I was at my seminary retreat, my brain did a major funny.  I knew something was off because I had slept all day.  David would get me up for meals, I'd eat and go right back to sleep.  Finally I managed to stay up after supper for a session and then campfire.   Towards the end of session I was gripped with an incredible headache.  Worse than I'd ever had before.  It had me curled up on the ground crying and rocking it hurt so bad.  After a time I managed to get it to the background (3 extra strength Tylenol helped) and went on to enjoy s'mores and the campfire.
Part way through the campfire I remember telling David he had to put me on the ground (I was sitting on his lap).  That was my last conscious memory.  I went on to have 5 seizures.  I'd come to in between and then go out again.  I had three grand mal or tonic clonic seizures and 2 focal or absent seizures.  One of my seminary friends is a paramedic and she was right there the whole time.  Apparently my blood pressure went wonky and for a brief time they lost my radial pulses.
All in all it led to an ambulance call and a trip to the hospital where they discovered I had extreme weakness in my left side. I was admitted overnight for observation and a CT scan. My headache also returned and the very nice doctor prescribed me morphine for the pain.  It's amazing how good a little bit of morphine can make you feel.
None of the testing they did in the hospital showed anything remarkable and I was released Sunday just before lunch.  Sunday passed uneventfully.
Monday however I woke up with lots of chest pressure and difficulty breathing.  It was back to the hospital with me.  My headache also returned.  This hospital wasn't as nice and would only give me Tylenol for my headache and it didn't help.  Again, despite all their testing they could not find the root cause.  Increased some of my asthma meds to help with the breathing and prescribed something for the headaches and sent me home.
At bedtime the headaches struck again with a vengeance, bring tears to my eyes and rocking.  The meds the doctor prescribed did nothing to ease the pain.  Tylenol wouldn't touch it.  Mom found me some other painkillers and they finally knocked me out.
I woke up this morning and managed to stay up for about 15 minutes before the sweats and chills took over and I felt like passing out.  Rest of the morning was spent in bed.
Now I'm off to yet another doctor.  Prayers for answers and relief from the pain and extreme tiredness would be appreciated.

Seizure and Wedding News

Just because I haven't posted in awhile doesn't mean that things haven't been happening.  It actually means that too much has been happening and I haven't had time to sit down and write!
We haven't had any more babies since the pictures I've already posted, but should have some soon.  Reglisse is already at 360 days, and Atarah isn't far behind her.  They are both first timers though, so it's hard to say for sure.  I'll post pictures as soon as those babies get to the outside!
And now for some pictures of another sort.  I captured these just before dinner tonight.

201 days without a seizure.  We have started tapering me off of one of my seizure medications and so far I'm doing great without it.  It will be a long slow taper and there are no promises that it will work, but for now, I'm optimistic.  Prayer point for this: that I continue to remain seizure free and that the taper goes well with no  adverse side effects. 

And the wedding is 2 months away.  2 months.  AHHHH!  that scream is both excitement, nerves, and everything else.  Prayer point for this:  David is still not able to get here due to some visa issues.  Prayers that that clears up would be great.

And that's all for now.  It's bed time. 

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!

Neurology Update

To all of you who were praying for today's travels and appointment, thank you very much.  The roads were a little messy, but we made is safely both there and back.
At the hospital there was a lot of waiting, which is normal.
As it turns out, there was nothing really to worry about.  Dr. B just wanted to check in and make sure he was on the same page as my neurosurgeon in Michigan.  He is pleased that my seizure activity has decreased.  However, as with my neurosurgeon/neurologist, he is concerned about the increase in frequency and severity of my headaches.
A recent CT scan in Michigan showed that Spot is behaving so there is no new imaging scheduled at this point, which is a huge relief (I hate when I have to have imaging, and it's not overly healthy to keep exposing my brain to radiation).
The plan at this point is to increase one of my medications, one that is supposed to control seizures as well as headaches and see if we can find a level that is tolerable to my system and helps the headaches.  I'll start increasing tomorrow after I get to the clinic to fill the prescription.  Hopefully it will be tolerated well and will help.  That's our big prayer right now.  That the medication change will go well and that my headache will decrease.
Again, thank you so much for all your prayers.

Unexpected Phone Call

Shortly before lunch today the phone rang.  I was back in my "office" (aka the bathroom of the grandparent flat: it's warm, dry, and quiet) struggling with a paper. There were enough other people inside that I didn't worry about answering it.  Shortly I felt footsteps coming towards my office.  I sure wasn't expecting any phone calls.  Mom knocked on the door as I looked up from Calvin.
"Dr. B wants to know if you want to see him."
My brow surely crinkled as I processed this new, unexpected tidbit of information.  Dr. B?  That's my neurologist here in Ontario.  In the City.  Typically it takes forever to get an appointment to see him.  And by forever I mean months and months.  I have plans to leave for Iowa on the 8th or the 9th and nothing is going to get in the way of those plans!  I forbid it to.
"He has an opening tomorrow if you want it"
Tomorrow?  As in the day after today?  yeah, I'll go.  I've been wanting to see him for some time now, just to retouch base and to discuss some important things with him.  Things like medication levels and debilitating headaches, and you know, maybe the odd seizure that pops up every now and then.  Afterall, he is my neurosurgeon.  Perhaps he'll want to peek at Spot, but I doubt it.  They checked on Spot not too long ago and said he was behaving.
So tomorrow morning, earlier than early, Mom and I will leave for the City.  Prayers would be appreciated.  It's a decent drive and some of the roads between here and there in the winter weather leave a lot to be desired.   Prayers would also be appreciated for the visit itself. There's always a lot of anxiety around these kinds of visits, especially when I'm being fit in on short notice.
So praying friends, please pray.

Seizure 101

This morning I did a brief seizure 101 session for one my classes, because whether I like it or not, I did have a seizure on Tuesday and people in my life like to know what to do if it happens again. (We are praying it was an isolated event!)  After class I wrote up a brief summary and e-mailed to my class, because I couldn't remember if I'd said everything I needed to say (I ought to use notes when I do seizure 101). I thought I'd post it here in case anyone needs a refresher or is just curious. Here it is:

 I find that by equipping people with information they are less likely to be anxious.

1.       I have seizures. They are part of my life, but do not define me. I am so much more than my seizures. For real. I can do anything that anyone else can do except stay up really late at night and drive a car.

2.       If I have a seizure, don’t panic. I will live. For real.

DO:

-          Stay Calm

-          Protect my head if you feel comfortable

o   Sweatshirts, coats, feet, laps, pillows are all options

-          Time the seizure. The first time you see a seizure it will seem like it lasts forever. In reality, it’s likely less than a minute

-          Try and remove my glasses and hearing aids if you feel comfortable (and put them in a safe place please!)

-          Roll me on my side after my seizure, especially if I am vomiting or sounding like I’m going to vomit. This will keep me from choking on any vomit.

-          Stay calm

DON’T:

-          Panic

-          Put anything in my mouth

-          Try and hold me still. This will hurt both me and you.

-          Do anything that makes you uncomfortable

-          Panic

 

3.        I will likely be confused and disoriented after a seizure. Please reorient me as to where I am, what happened and who you are.

 

4.       A seizure is not a 911 emergency unless:

a.       I seize continuously (continuous convulsions) for 5 minutes or more

b.      I have more than 5 seizures one after the other (waking up only briefly in between each)

c.       I hit my head hard enough that there is blood (not just blood from biting my tongue)

d.      I stop breathing and don’t start again (I often stop breathing for short periods during a seizure as my airways spasm)

e.      I choke on my own vomit and therefore am not breathing

 

If you have any questions at all, please ask me. And please, don’t define me by my seizures. They are part of me, not all of me. And hopefully you never ever have to see me or anyone else have one. But if you do, you know what to do.

Prayer Requests

This post is a list of prayer requests because there is so much on my heart today.

Number 1:
Tamara (a friend of my brother) and her son Terrence are in the hospital as 3 year old Terrence receives chemotherapy for leukemia.  The hospital is very far away from where Terrence's daddy and siblings live.  Please pray for healing for little Terrence and that G-d would somehow use this situation to bring the family to him.

Number 2:
A dear friend of mine was admitted to hospital yesterday with what currently appears to be a killer case of mono.  It had caused her tonsils to swell to a point that swallowing and breathing were difficult.  She is currently planning a wedding and looking for a job.  Please pray for strength and quick healing.

Number 3:
Many churches are getting ready to kick off their fall programming.  Please pray for the leaders of the churches as they prepare and launch. Pray also for those who will be drawn in by the fall programming.  Prepare their hearts and their minds and their souls.

Number 4:
My dad was able to stop taking some of his fever-reducing medication over the weekend and his fever didn't come back!  Praise the Lord of this step in the right direction.  Please continue to pray for a complete recovery.

Number 5:
After 138 days with any seizure activity, I had at least 2 seizures today.  There may have been a smaller one in the morning, but I don't remember.  A few classmates who know me well said that there was some definite odd behavior and motions from me and made them think seizure.  I'm quite upset and am really searching as to what my next steps should be and where G-d is calling me.  Please pray for peace and clarity and that this was a one time event.

Number 6:
I am preaching my first morning service on Sunday.  I currently have nothing on paper, nor do I have a pianist/music  leader.  Please pray for guidance and the moving of the spirit.

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!

Rejoicing and Lifting up

As with many things in life there is often and upside and a downside.  Sometimes they are completely unrelated.
First for the upside and super-duper happy news:
As of August 6, 2011 it will have been 100 days since I had a seizure. This is cause for great celebration. As Psalm 30:2 say, the LORD is the one who brings healing. I invite you to come celebrate with me and others.

It will be a rather informal (I don't do formal well) come and go type event from about 5pm-10pm. I'll have yummy baked goods, maybe some cheese and crackers, and a veggie tray and maybe some fruit of some sort out for snacking (we'll see how adventuresome I feeling this week). I'll probably also have some juice, tea (lots of tea, I like tea) and water available. If you'd like to bring something to share, please feel free, but it is not required by any means (no alcoholic beverages please).
I hope at some point to have a fire and maybe some marshmallows and s'more type stuff stuff out as well.
Feel free to bring spouses, significant others, children, etc as you feel is appropriate. And bring a lawn chair. That would be very useful.
I know some of you that I'm inviting can't come because you are in different states/countries/etc, but I still wanted you to feel invited. And if you can come, that would be amazing!! If I forgot to invite you and you see this, feel free to invite yourself. My brain has been known to forget people before (never intentionally!).
So, come celebrate with me :)
If you don't know where my back yard is, message me and I'll fill you in. I don't want to post the address here where anyone can see it because I don't want creepers at the celebration because that would be creepy.


Now for the downside/prayer request that is completely unrelated:
My dad is sick.  He has some sort of flesh eating bacteria or something and it's making him really really sick.  This kind of infection can be deadly if it isn't treated soon enough.  Thankfully, Mommy and Papa found it in time and he's on IV antibiotics.   Please pray for him and for my family.  He doesn't like being sick (no one does) and it could be awhile before he is well enough to go back to work.   Please pray that the doctors have wisdom in treating him and that he has patience as he heals.  Please also pray for a quite healing.  We serve a G-d of healing as evidenced by the post above.  I have confidence in that. 

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.

In the Interim

I have thoughts.  I want to write them.  Thoughts about love and alarms and the coming of Christ and Disney Princesses and alpaca babies and sunshine and butterflies and coloring book, but there has been a temporary setback in my ability to write these thoughts out. So in the interim, I leave you with this.  It's part of a note posted by a dear friend of mine (used by permission).  Due to a potentially chronic disease her life has been altered by diet changes and medications.  While her experience is different than mine, many of the things we feel, especially when it comes to social situations, are similar.  She did such a wonderful job capturing her thoughts and feelings, and unintentionally capturing mine, I decided to share.  I resonate most with what she writes about being socially isolated and people trying to make decisions for her.  The awkwardness of having to turn down a dinner invitation or explain special food needs or bring your own food to a function or back out of plans at the last minute because you are too exhausted or slip out to take your meds discretely is almost always less painful than not being invited in the first place. I have limits too, but I am a grown-up and can make my own decisions about when I need to slow down.  And, like my friend, I have a giant granny pill pox too.  (It's almost identical to hers). 
Without further rambling from me, here is the final portion of her note.  The only change I have made it to abbreviate the name of her condition to help protect privacy (and because it's really not that important):

It’s been hard dealing with the drugs and a special diet and everything else, but when I look back to where I was and how far I have come, I am glad I’ve been able to do these things and had people to help me along the way.  Yes, I carry a giant granny pill box with me everywhere and sometimes feel like my life is dictated by my med alarms.   No, I can't usually eat what other people are eating.  But if these things will help me to get my life back, they really are small sacrifices.

But it still has been hard to face my limitations.  It’s been hard to be different.  It’s been hard to not do everything I once did and everything I still think I should be able to do.  It’s been hard to accept help from other people.  It’s been a journey, and I know the journey is not over yet.  But it hasn’t been a journey I’ve had to travel on my own.  Yes, I have often tried to push people out of my life.  I guess it’s like I get to a point where I’m tired of depending on other people and being a burden, so I decide I’m going to live life on my own.  So I try and push everyone away.  But this never works.  God didn’t create us to live life on our own.  He created us for community.  I understand this in my rational moments, but unfortunately, all-too-often I have been less-than-rational.  This journey with LD often feels like one giant roller coaster.  (Honestly, it feels like I’m PMSing 24-7.)  Some days I can handle the ups-and-downs and take it as a part of life.  Other times I just get angry….angry at life, angry at the disease, angry that I can’t do what I want to do, angry at God, and even angry at you, if you happen to be in the wrong place at the wrong time.  I’ve never really been an angry person, and I have a hard time knowing how to deal with this anger.  In retrospect I can usually see what a jerk I was, but at the time, I’m just angry, and say and do things I shouldn’t and hurt people who I love.  (This is not a justification or an excuse because I am still responsible for my own behavior, but when I saw, “moody, irritable, and cry easily” on a list of LD symptoms, at least it made a little more sense where it could be coming from.)

I often feel isolated and lonely in this world of disease.  It’s a world I don’t understand and I’m living in it so I really can’t expect others to be able to understand it.  But I feel like people are always wanting to protect me.  It’s like because I’m sick, I’m now “fragile.”  They’re trying to keep my health and well-being in mind.  They’re trying to help with my healing.  So they end up doing things for me in an attempt to save me energy and bless me.  In some ways I am grateful, as the tasks they do are often things I probably couldn’t do on my own.  But in the process, so often I feel like I’m useless, like I’ve been put up on a shelf with the ceramic figurines, left to gather dust, but beyond that, I’m really not good for anything and will soon be forgotten.  Other times they don’t ask me to help out or be involved in things because they don’t want to overwhelm me.  They’re trying to protect me, and give me a chance to heal.  Like that ceramic figurine placed carefully on the top shelf out of reach, they think it’s a whole lot better to leave me alone than to actually touch me and risk breaking me.  But even if I have limits, I can still make my own choices.  I can be given opportunities and allowed to choose if I take them or not.

In this world of disease, I also often end up feeling very socially isolated.  Not only am I no longer a useful member of society, so often I feel like I am not invited somewhere because they know I can’t eat the food, or I will probably be sleeping, etc.  They don’t want me to feel left out or put me in an awkward situation (such as sitting at a restaurant and trying to explain to the waitress that really, they can’t make food that I can eat so I’m just going to sit here), so I’m just not invited.  But in reality, this just leaves me feeling more lonely and forgotten.  Or I’m with a group of people, and they totally talk “around” me, not even acknowledging my presence.  In these situations I’m left wondering if I’m not wanted, or they’re assuming I don’t want to be included, or they don’t know how to include me so it’s easier to ignore me, or what.  It’s hard.  Our society is very focused around food, and you become VERY aware of this when food is taken from you.  And let me tell you, it’s already a whole lot of fun to be eating a spinach salad while everyone else is enjoying yummy goodies, and it just makes it better when people tell you over and over again, “Yuck!  That looks gross!  I’m sure glad I’m not eating that!”  For the most part, I’ve come to terms with my special diet, but people telling me my food is gross really doesn’t help this situation.  You may not enjoy it, but guess what?  You don't have to eat it, so please keep your comments to yourself.

And speaking of food, yes, I am losing weight, and yes, I am aware that I don’t have weight to lose and that my bones are protruding in places they shouldn’t be.   Yes, I know most my clothes don’t fit me anymore and I look like a bag of bones.  Trust me.  I know these things—without you telling me.  You don’t need to point them out to me, really.  I know them, and everyone else has already taken it upon themselves to remind me of it as well.  I don’t need you joining in, too.  I have become very self-conscious of my body, and you telling me I need to gain some weight doesn’t help.  You try cutting all sugar and gluten out of your diet and not losing weight while you’re healthy, and now add the absorption issues that come with LD to that, and yes, you, too, would be losing weight.  Without your help, I am reminded of this every time I walk by a mirror. Without your help, I am reminded of this every time I put on a pair of jeans and have to tighten my belt to hold them up.  Without your help, I am reminded of this every time I put on a shirt and feel like I’m swimming inside of it.  Without your help, I am reminded of this every time I put on a dress that I’m supposed to wear for one of the weddings I’m in this summer and wonder how I will be able to hide my ugly, gangly body so that I don’t mess of the perfect pictures of the weddings I’m in.  Giving me recipes for high calorie, good-tasting foods that I can actually eat would be a whole lot more effective method of dealing with my weight loss than telling me my clothes don’t fit and I’m going to blow away if I don’t put more meat on my bones.

Most days I’ve come to terms with where I’m at.  I realize I am quite blessed to have family, friends, and doctors who have helped me figure this thing out and get on top of it before it became a bigger monster.  And although I can’t say this journey has been the most fun thing in life, I have also learned a lot through it.  I know God has me here for a reason, and He isn’t abandoning me here.  But there are still plenty of days that are just stinking hard.  And something seemingly small can very easily set me off.  Just last night some friends were going out stargazing.  I LOVE stargazing, but I knew I needed to go to bed.  Instead of being able to handle the situation like a mature adult, knowing there would be plenty more opportunities to go stargazing in the future, I became angry at this stupid disease for interfering with what I wanted to do, and angry at God for leaving me here for so long.  And now today, it’s tough to think about the fact that I am starting year two.  I had gotten to a point where I had accepted the fact that I just need to take one day at a time.  Well-meaning people will often ask me how many drugs I have left or how long it will be til the end.  These are questions I can’t answer, and I have more or less come to terms with not having answers to.  But every time I throw a drug bottle in my empties box and see the pile grow a little more, I think about the pile it came out of….a pile of unknown size.  On good days, I think, “That’s one more bottle closer to being better!” but on bad days, my mind creates a picture of a mountain of full drug bottles so big that the growing pile of empties doesn’t even look like an ant hill in comparison.  This is not a journey that has a known ending date or even destination, so I try and focus on the here and now, seeing how God is working in the midst of it.  But even as much as I try to take it one day at a time and not focus on the time, it’s hard to think that I’m starting another year.  This last year has been tough.  I don’t expect this next one to be easy.  And dare I say it?  I don’t know how many more there will be in this journey....  But God promises to go with me all the way, and I guess if He's going with me, the journey will be worth it!

PS: (From me, not my friend)  I am currently not losing weight.  I'm actually gaining some at this point because my limitations have made it much harder to be as physically active as I should be. But rest of it, spot on.

Happy News-es

This post is all full of happy news-es.  No sad news-es allowed.  Okay? go!

30 days without seizures is great.  This is a good sign that the meds are working.

• Classis exams are done.  I passed all of the exams I took today.

It's coming!!!!

• It's almost baby season!
• I got to have conversations about Celiac Disease and disability awareness/accessibility in churches today.
• My sister made rhubarb crisp from fresh rhubarb and gave me a piece for bedtime snack while it was still warm.
• Sunday is tomorrow!
• It's bedtime!

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!

Very Waiting

I'm at a waiting place.  A very waiting place.  There are different kinds of waiting.  Sometimes waiting is just a matter of putting in time.  Other times, you hardly know you are waiting.  And sometimes there is the very waiting.  That's where I am now.  I'm waiting for the phone to ring.  It's the kind of waiting where you don't go anywhere without your phone and you don't dare turn it off. It's the kind of waiting where you explain to your professors that your phone is going to remain on vibrate during class and that if it rings, you will take the call, irregardless of what is going on in class.  It's the kind of waiting where you come back in when you are half way out the door with your hands full of garbage to grab your your phone because you don't want to miss the call because you are taking the garbage out.  It's the kind of waiting where a text message jolts you out of an unintended nap and leaves your heart pounding as you search the couch cushions for your phone.  It's the kind of waiting where you check your phone repeatedly because you think maybe you felt it vibrate.
It's the kind of waiting where you are both eagerly expecting the phone call and dreading it all at the same time.  It's the kind of waiting you do when you know this phone call could either change everything, or change nothing at all.
All this waiting has prompted some thinking.  As the body of Christ, we do a lot of waiting.  We even have whole church seasons designed for waiting.  We call them Advent and Lent.   In Advent we wait for the coming of Christ.  In Lent (which is almost over by the way), we wait for the Celebration of Easter.  And then of course there is the time after Easter when we wait to celebrate the coming of the Spirit at Pentecost.  Our church year revolves around waiting.  And then there is the Big Waiting.  The waiting for Christ to return and the kingdom of heaven to be realized. But how often do we really realize that we are waiting?  How often do we engage in the state of Very Waiting?  Do we wait for Christ with the same expectation that we wait for a potentially life changing phone call? How would that look?  How would our lives be different?  What if we knew that Jesus was going to call us up on our cell phones? How would we go about making plans?  How would we live?
Waiting for Jesus is a different kind of waiting than waiting for this phone call.  I knew that today was the earliest I would possibly hear anything.  I know that now that it is after 5pm I am  not likely to hear anything until tomorrow morning.  But it doesn't work that way with Jesus.  He isn't bound by the business day, nor is He bound by whether or not you have cell phone reception. And when He does come, it will change everything. Are you ready to join me in the Very Waiting?

The Week in Review

*warning*  I am on a rather large dose of Xanax as I write this.  I will do my best to make sure it is coherent, but no guarantees. *end warning*
This week has been crazy. On Tuesday I met with my new neurologist, Dr. A.  He was very nice and took time to listen to me.  He was also rather concerned about my brain, particularly Spot.  Spot is a lesion on my right hippocampus. We aren't quite sure what he is. At first they thought he was a cyst or scar tissue.  Then they though he was tumor.  I'm not sure what they think he is now, or how they are going about finding this out.  Nobody has ever asked him what he is.  They just take pictures of him and he just hangs out.  Except the fear is that Spot is not as well behaved as we would like him to be.  So Dr. A decided that I needed to have another MRI.  I hate MRIs.  That's why I'm on lots of Xanax right now.  Dr. A won't get the MRI results until Monday, so that's the earlies I will hear anything.  I hope not to hear anything on Monday.  The longer before I hear anything, the less likely it is to be bad news.  At least, that's my theory.
Dr. A also started me on Zonegran to try and control some of my seizures.  In theory, this was a good idea. In reality...well, it didn't work out so well. When the antihistamines I'd been on for seasonal allergies wore off, a nasty reaction to the Zonegran broke through and I ended up in ER for steroids and Benadryl.  So no more Zonegran for me, which is a shame because it was a really pretty purply color.  Instead I'm on Trileptal, which is not near as pretty.  But hopefully it doesn't make me sick.  Time will tell.
Also this week, in the midst of this drama I had 4 Silent Praise events and wrote a sermon.  And other school work.  Yeah...it's been a busy week. I preach tomorrow night.  I hope it goes okay.  Prednisone does not make for the clearest thought patterns.  Also, right now, spell check is my friend.  It took at least three tries to spell the word thought in that last sentence.
Last night was spring banquet.  I got to where a pretty dress.  and eat yummy food.  even ice cream.  and didn't make me sick.  hooray.

Neurology update

I saw my new neurologist this morning.  Thank you to all of you who were covering this appointment in prayer.  Overall it was a very positive appointment.  I felt that the neurologist actually listened to me and took the time to let me voice my concerns and fears.  He doesn't have the results from my hospital stay yet, but will get those and review those.  In the meantime, he is starting me on a new medication Zonisamide (Zonegran) to try and eliminate any epileptic type seizures.  He believes (along with me and others) that I am having multiple types of seizures.  Additionally, he has ordered a new MRI of my brain.  My last MRI was almost 2  years ago now.  The CT three weeks ago was unclear (as CTs are apt to be) and he wants to take a closer look at Spot (my brain lesion that was found after the seizures started).  He suspects that Spot is causing problems (which I've suspected all along).  Whether Spot is causing problems or not, it will be good to have  look at him again and make sure he is behaving.  My MRI will be Saturday (April 16) at noon.

If you are in Holland and would be willing to give me a ride to and from my MRI on Saturday (at Holland Hospital), it would be appreciated.  As an added bonus, I will be drugged for this MRI, so it should be fun.  I hear I'm quite entertaining when they drug me.

If you are a praying person, please pray for the techs who will be doing my scan and for the specialists who will be reading it.  Please ask the Lord to give them wisdom and guidance. Please also pray for me.  I'm very claustrophobic (I freak out in elevators).  They are drugging me for this to help with that, but MRI's are still rough experiences for me. Pray that I have peace about it and am able to stay calm.