EMHU

I mentioned in my last post that I might post about my stay in the Emergency Mental Health Unit.  I've decided to do so.  I did all the writing just to process on my own, so sharing isn't hard. It's long and not necessarily pretty, but it is truth.

They’d told me I was being moved to a different hospital, but if anyone had bothered to tell me where, I hadn't heard or it simply hadn't registered in my still drug-confused brain.  I knew an ambulance was coming for me and it was taking me away.  My husband would follow in the van with my belongings.  I lay propped up in the back of the ambulance shivering under the thin sheet, watching the rain fall outside the windows, occasionally glimpsing my husband’s van as he followed.  I didn't even know what day of the week it was.  About halfway to the hospital my hearing aids made their pleasant little noise that informed they were about to die altogether.  By the time we got to the hospital I had two dead batteries and no replacements.  The world around me became a mixture of muffled sounds.  My head hurt, I was tired, I was scared, and I was confused.  I knew enough that I figured they were taking me somewhere where I could get more help – I couldn't have been more wrong.
We stopped outside the hospital and my husband handed me my stuffed bunny, Sampson.  I clutched him tightly to my chest, shivering with fear just as much as with the cold dampness from outside.  The paramedics led me inside, down a dark hallway.  They stopped outside a door.  There was a sign outside the door, but I didn't get a chance to read it before the door was opened.  I was gestured inside while a scowling nurse plucked Sampson from my arms.  “He’s not allowed here.”  I started to cry.  I wanted my husband.  I was told I could see him later.
A nurse handed me a gown and pointed towards the bathroom.  “Change in there.”
I obeyed, stripping down to my underwear and putting the lightweight, three-holed hospital gown on.  I was shivering again.  Or perhaps, I was still shivering.  I couldn't remember having stopped.  I came out of the bathroom and stood, feeling half naked in the hallway until a nurse pointed towards an open door.  A room, with a bed and two chairs, bolted together to a table.  No windows except for one narrow one along the top that I couldn't see out.  I sat on the bed.  A nurse came in to ask some questions.  I was frustrated and scared so I started signing instead of just talking.  She mocked my signing and then walked out on me as I tried to explain that my hearing aid batteries were dead.  I never did hear what she said as she walked away.
I sat alone in the room, unsure of what to do next.  There was a blanket folded at the end of the bed.  I unfolded it and wrapped it around myself, trying to get warm again.  A sense of panic was growing in me like a vine that takes over a wall and pulls it apart to nothing.  I started to scratch at my arms, clawing at them, trying to gain some sort of control back.  If I could somehow feel again, if I could control that one little part of my body, then maybe I would survive this.
Finally I saw my husband coming through the same door I had come through an indeterminate amount of time earlier.  I wanted to run to him and hug him, but I was afraid to leave my room.  He came in and I hugged him for what seemed like forever.  He immediately noticed bloody spots on my arms where I had clawed at myself. He kissed me gently as I wept and shivered.  I told him about my dead hearing aid batteries and he went off on a mission to get me new ones.
While I was grateful to know that new batteries were on their way, I was terrified of being left alone again.  I continued to scratch at my arms and rock back and forth on the bed, trying to find a way to calm myself down.   I don’t know how long it was before my husband returned – there was no clock for me to look at and they had taken my watch away – but the new batteries were a welcome sight.   Seeing my intense distress he asked the nurses if I might have my stuffed bunny.   I didn't hear the whole conversation, but the answer was negative.  Sampson would not be allowed to join me, no matter how great my distress.   My husband was able however to get me a pair of sweat pants to wear under my hospital gown and provide a small amount of warmth.
A nurse offered me a sandwich and seemed confused as my husband and I tried to explain that I couldn't have it because of my multiple food allergies – all of which were clearly listed on my chart. I had some snack food in my possessions and that was what I was given for my supper.  I would meet with a dietician sometime the next morning to discuss meals.
I cried when they told me that my husband had to leave.  I begged them to let me have my bunny. They refused.  I spent the night clutching my pillow to my chest and crying as I rocked back and forth on the hospital bed.    No one had bothered to have a conversation with me yet as to why I was in this place, what the plan was, what the rules were or what was expected of me.  I don’t remember ever having felt so alone in my life.
A dietician came to meet with me sometime before lunch and we went over my allergy list.  I emphasized over and over again that these were severe allergies.   When the dietician was done with me it was time for me to meet with the psychiatrist.  He was a big man with a lot of facial hair, making his lips almost impossible to read.  Thankfully my charts had been sent over from the last hospital I’d been in and I didn't have to go through every painful detail again.  Unfortunately, this also meant that assumptions were made and questions that should have been asked weren't.
By the time the doctor was done with me, my lunch was waiting in my room, getting cold.  My stomach was starting to growl, having had nothing of any substance since noon of the previous day.  I recognized steamed vegetables, rice and some sort of meat in sauce and dug in.  Halfway through my meal I slowed down enough to pay attention to what was in my mouth.  The unfamiliar texture and taste of pineapple played over my tongue.   I shook off the warning bells blaring in my head.  Surely they wouldn't feed me pineapple.  I had met with the dietician mere hours before and pineapple was listed as one of my most severe allergies.  I must be mistaken.
Not much time had passed after lunch when I began to feel the all too familiar itching and swelling of my tongue and lips.  There was no denying it anymore.  There had been pineapple in my food and I was going to pay the price.  I went to the nurses’ station and asked for some Benadryl, hoping to avoid a shot of epinephrine.  They didn't have any, but would call down to the emergency room and see if they could get some.   My heart sank as my blood pressure dropped.  I didn't have that kind of time left.  I asked for my Epi-pen and as the nurse unlocked the medicine chest I slid down the doorframe to the floor in a semi-conscious stupor.  My Epi-pen was handed to me and I administered the medication, wincing not only with the pain of the spring loaded injection, but also with the thought that my husband and I now had to replace a $100 Epi-pen – an expense that we simple couldn't afford.
A doctor came and briefly listened to my lungs.  He never spoke a word to me, never examined the rash that was spreading across my stomach, never asked me about previous reactions and treatments.   “Take her to her room” were the only words I heard him speak and they weren't even directed towards me.  In terror I allowed two nurses to help me back to my bed.  I knew I needed Benadryl and steroids and quickly – epinephrine would only stay in my system for about fifteen minutes, if the other drugs hadn't been introduced by then, I’d be right back where I started.   I focused on keeping my breathing calm and making the most of every breath I took in.  Finally a nurse brought me a dose of Benadryl.  I was too desperate to protest the bright pink tablets – I knew the food dye would trigger another reaction, but I counted on the Benadryl to counteract itself and prayed that there was also a dose of steroids on the way.  Sure enough 50mg of Prednisone followed after a long while and I drifted off into a drugged sleep.  My last thought? I have to see the allergist in a week and I’m not supposed to have anti-histamines in the week prior…so much for that.
I awoke to my husband standing over me.  As I fought my way through the drug-haze back to full consciousness I told him what had happened.  He burned with anger.  He came to lie down in my bed beside me, to cuddle me as he had the night before. No sooner had we gotten comfortable than a nurse came and yelled us – telling us it was against the rules for him to lie on my bed.  He protested, saying that he had spent a couple hours lying with me the day before.  It did no good.  The nurse had made up her mind. He would not be allowed to provide me with the physical comfort of his touch.
When my supper came we examined it with a critical eye.  I ate only what was clearly recognizable as “safe” – the fresh fruit they had sent.  He ate rest of it and left briefly to get me a pizza.  We weren't taking any more chances with hospital food.
I had been in the hospital for 24 hours and nothing had happened, except for the severe allergic reaction.  I was not sure how this hospital was supposed to be helping me.  The nurses had made no attempt to talk to me about what had brought me to the hospital, to comfort me, or to help me straighten my thoughts out.  I had seen no counselor and had been given no indication of any steps I could take to help myself.  I felt like a criminal in a jail cell, unsure of what my crime was.
I spent another lonely night in my cell, as I had taken to calling my room.   My brain danced all over the place in a Prednisone induced frenzy.  The lights were never shut off in my room and try as I might I could not get any sleep.  Even the dose of Benadryl that they gave me around midnight did nothing to put me to sleep.
After a sleepless night they brought me more Benadryl.  I protested – I didn't want it and I knew I didn't need it.  I’d walked the road of anaphylaxis many times before and I was out of danger…medication would only be needed if I got worse.  I was beyond the point where I needed it every six hours, especially with my allergist appointment coming up.  My protests fell on deaf ears and I was given the meds anyway.  I seriously considered “cheeking” the Benadryl and disposing of it down the toilet as soon as the nurse left, but decided that since I still hadn't been discharged I should be the model compliant patient.
Breakfast came.  I examined it and turned away a bowl of cornflakes…corn was also listed as one of my allergies. I ate some fresh melon and some grapes and drank small cups of orange and apple juice.  It did little to still the hunger in my stomach.  I lay back on my bed and began to rock, hoping to ignore the hunger pangs until my husband could come in the afternoon.  After a time I was told I could shower.  I hadn't had a real shower in almost a week and the hot water felt heavenly pounding against my body.  Even better, I was allowed to change out of my hospital gown and into my own clothing.  I felt slightly more human.
Soon I was escorted back to the small room where the psychiatrist would see me. I made my case for going home and won.  The sense of relief that flooded me was nearly palpable. I would be leaving this hell.  I was terrified of going home, but I was more terrified of staying.  If I had been broken when I arrived at the hospital, I was completely crushed in spirit by now.  Since I wasn't allowed access to my Blackberry, a nurse called my husband to let him know I was being discharged.  I went back to my cell to wait.  And wait.  And wait.  Lunch came and it went the same way as breakfast.  I ate a little bit of fruit and sent the rest back.  My stomach was cramping down on itself in hunger, but I knew that my husband would arrive soon.
A nurse came in to go over my discharge orders with me.  I pointed out an error she had made and she had to go back and change it.  Maybe I shouldn't have been so picky, but there’s a difference between not changing my medication at all and tripling my dosage.  I wanted written record of it so that if my charts weren't passed over to my family doctor in a timely manner for continued care, I could still get the medication I needed.
Finally my husband showed up.  We reclaimed my belongings.  They gave me my remaining Epi-pen (I had two of them when I came to the hospital) and told me that that was all the medication I had come in with.  My husband and I both protested, saying that I had also brought my inhaler with me.  The nurses argued saying I hadn't.  Finally we opened up my bags and pulled out my blue rescue inhaler, showing them that it had indeed been with me when I came in.  I shuddered to think of what would have happened if I had needed it while I was in the hospital. I wouldn't have had access to it and no one would have believed me that I brought it in – because they had searched my belongings.
We gathered up my belongings, including my inhaler and left.  I was so glad to be out of that place, that if I had had the energy I would have done a little dance.
Hospitals are supposed to be helpful places, but this one was more traumatizing than anything else.  I’m still waiting to be able to sleep nights again, and my husband is waiting for me to stop rocking in internal pain.

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.

The Sermon That Wasn't

Late last fall I was asked to preach at the church I grew up in.  Naturally I said yes.  I am one of three seminary students from my home church and it was the first time I was asked to preach here and I was just as nervous as I was excited.  I have preached lots of times in my teaching church and other places in (little) Holland, but there is something different about being in front of people who have watched you grow up, through the good and the bad, the pretty and the ugly.
I was nervous, but as Mommy Glynis taught me through my years of drama in the MVPs, appropriate nervousness is a good thing.  If you aren't nervous you are too full of yourself.  This piece of wisdom was affirmed by my preaching professor last year.
I ate breakfast this morning and went off to church with my dad (sound tech) and Littlest Brother (playing prelude).  I got wired and did sound checks.  I sat on my stool behind the pulpit to get the feel for things. I talked with the person running visuals and got everything set for that.  I went downstairs and prayed with the pastor and elders.
I felt fine as I sat in the front pew next to the pastor waiting for the sermon time.
I got up, settled myself onto my stool, prayed, read the scripture, and started my sermon.  I made it through the beginning paragraphs.  Then the words on my page started to blur.  My head started to spin.  Pauses between be words and sentences became longer and longer.  Things became tunnel. The next thing I remember is coming to on the floor with people around me. I had passed out.
 First responders and nurses in the congregation revived me, and someone called 911.  The local fire department showed up first.  They put me on oxygen and I desperately wanted to finish my sermon.  They sat me up on my stool and I promptly passed out again.  Paramedics showed up and didn't give me a choice about hospital time.  I quickly found myself in a cervical collar and strapped to a backboard and in an ambulance.  I spent a couple hours in the ER getting IV fluids and blood work. We didn't get any real answers as to why I passed out, however the doctor suspects an electrolyte imbalance and if I keep watching my mineral intake I should be fine.
So in other words, my sermon never got preached.  I have yet to find a silver lining to all this or a purpose behind this. Perhaps satan didn't want the congregation to hear my message, perhaps it was just because I had been sick with an upper respiratory infection for the last couple weeks, perhaps it was random.
But I'm not giving up.  If they give me another chance, I will preach it again.  And I will keep trying until I get through it until it turns into the sermon that definitely was.

How to help

After my blog post about mounting frustrations and some facebook posts about frustrations I’ve had a number of people asking how they can help make things easier for me while I heal.  I’m not usually very good at asking in the moment.  I’m notoriously bad at asking for help.  I try to be independent, I try to not burden other people, but I’m trying to learn to be humble and accept help.  So, if you genuinely want to help, here are some suggestions on you can help. *Note: this will be ongoing.  Doc says I might be off my leg for 6 weeks or more*

• As long as there is snow and ice on the ground I can’t get in and out of my house to get to class.  I need to be at school at 8am on Monday and Thursdays.  The other days it’s roughly 9:30 that I need to be at school. 
• I can get my laundry downstairs and wash it, but I can’t get it back upstairs.  Right now there is a load waiting down stairs to come back up. 
• On February 19 I am preaching the evening service at First Reformed Church. I can’t get there on my own and need a ride.  I will also need a ride home.
• I need to go to the bank on 8th street.  Again, too far for me to get on my own
• I'm going to have to start physical therapy soon to try and rehabilitate my knee. I don't know where for sure yet or how often, but I know it's going to have to be happening.  The doctor hopes to have me up and walking on my own by the beginning of April.  We'll see if the physical therapist agrees.  
• Being able to get to the therapy pool a couple times a week at the aquatic center would be excellent for my knee.  Normally I ride my bike to the aquatic center, but with my knee all messed up I can’t get there.  The aquatic center has free wifi, lots of swimming place, a workout room etc, so if you want to bring me so that I can work on my knee, there are lots of ways to amuse yourself (if you want to swim or workout I can even give you a pass).  Here’s a link to when therapy pool hours are.  There are not always regular swimming hours during therapy hours.
• I can't get to the grocery store on my own. Even being there is a bit of a challenge. 
• I'm sure there's more, but that's what I've got for now. 

Frustration

Every once in a while someone will ask me how I manage to do it.  How I manage to go through life with a smile on my face no matter how many blocks are stacked against me.  Most the time I just smile and say that it’s not all that bad, that I just smile and go on with it because I have no choice.   And I usually don’t write when things are bad.  I might write when things are a little bad, but never much.  I try to make light of it or find humor in it, but to really write, I tend to avoid that.
But not today.   Today is a mostly uncensored picture of what really bad looks like.
I have a chronic underlying medical condition that affects how my body processes sugar (and carbohydrates which are broken down into sugar).  Most the time it’s not a big deal, it just stays dormant and I don’t really have to worry about it.  Every so often it flares up.  A couple times a year, typically right after a major holiday or a time of major stress (read: exams), and even more so if my immune system has been compromised by seasonal bugs (stomach flu, influenza, colds, etc).  Like it or not, I’m in the midst of a nasty flare. Which means I’m grumpy, I have frequent headaches, I want to sleep all the time, I’m nauseous, I have to take icky medicine, and I can’t eat anything.  I’m allowed to eat unlimited amounts of nuts, eggs, meat and fat.  Except I’m severely allergic to nuts and eggs.  So that leaves meat and fat.  And very limited amounts of other foods, some more limited than others.   I can have some rice and vegetables (as long as they aren’t starchy), but next to no potatoes, fruit or processed grains. It wouldn’t be a big deal if I had the energy to think about meals and unlimited resources to figure out what to put into my body to limit getting sick.  But I don’t.
And then factor in the wheelchair.  About two weeks ago I took a nasty fall that injured my knee.  Initially the doctor thought it was just a bad sprain.  Gave me some anti-inflammatory drugs, told me to ice it and stay off of it and call him in a week if it wasn’t better.  I called him last week.  It was some better, but nowhere near all better.   He told me to give it another week.  That week will up tomorrow.  I’m still waking up at night because of the pain.  I spend a large amount of my day in a wheelchair borrowed from church, because it’s faster than trying to get around on crutches.  I use the crutches if I don’t have far to go and don’t have much to carry with me.  On the bright side, my left leg (the “good” leg) and my shoulders are going to be super muscular by the time this is done.
I’ve always had a decent idea of how inhospitable the world can be to those in wheelchairs, but actually spending a lot of time in one changes your perspective a bit.  For example, at the seminary, the only street side door that operates via a switch is by the library.  The door where most of the community enters the seminary (by the community kitchen and commons and chapel) does not operate via a switch.  Because that door is relatively light I’ve learned to master it by grabbing it with my right arm, flinging it open, and then quickly maneuvering myself in, just far enough to keep it from closing on me.  And then repeating the whole thing with the next door.
Bathrooms have become more accessible over the years, except for the part where you actually have to get into the bathroom.  For some reason building people like to put really heavy doors on bathrooms.  And almost no bathrooms have switch operated doors.  To get into a bathroom I line myself up backwards to the door and push as hard as I possibly can.  And then I push some more.  Sometimes I can get it.  Sometimes I have to wait for someone to help me.  And then there are those wonderful bathrooms like the one at church that have a decorative flower stand type thing just inside the door (it actually has a basket on it that has emergency supplies in it).  Sometimes it’s too close to the door and in my Rambo-style pushing to get in, the door hits it and knocks it over.  The wheelchair usually fits in the stall, but then there is no wiggle room at all.  I have a good leg that I can pivot on, but it’s still a fine art of getting from the chair to the throne and back.
Oh, and during all this it hurts.  My knee just doesn’t stop hurting.  I can’t ever forget that it hurts.  It won’t let me.  By the end of the day, the pain is so ridiculous that I’m ready to cry.  And sometimes I do.  Forget the effort it takes to try and make dinner or take a shower.  Forget independently going to go get groceries or even getting to the pool for the aqua-therapy that will make it feel better.  I’m doing amazing to managed to get out of the house for class in the morning (it’s not graceful, it’s not pretty, it’s not dignified, but I can do it.  Sorta).
And that’s just part of the picture.  I’ve got a sinus infection dealie going on right now.  I can hear even less than I can normally hear.  As fluid shifts in my ear canal my balance goes wonky and the sound keeps shifting.
Oh, and my fiancé is in a different state (and time zone), we’re  planning a wedding and going to school and working church.  This is life.

How do I do it?  Some days I smile, other days I cry.  Not every day is good, not every day is bad.  Most days are good, many fall in between, but sometimes, sometimes I have those really bad awful no good kind of days.   And then I go to bed and hope the next one will be better.

Finals Week

Every now and then Finals week and/or midterms come around.  About once a semester each.  And sometimes they don't  quite as planned.  Blog posts like "How to Study for Finals" or "How to write a paper in 45 simple steps" or this one about midterms get written. And then there are those really terribly awful midterm/final times like last spring when I ended up in the hospital for brain stuff.  Every time I have a bad bought of it, I assure myself that it can't get worse.  Except, it can.  And it does.
I write this because I know many of you are praying people and I covet your prayers (not only for me but for everyone in this finals season).
Sometime between (American) Thanksgiving and  the beginning of December I got a migraine.  I didn't think much about it since I get migraines every now and then.  Typically I ignore them and they got away.  If they refuse, a good dose of Tylenol and some extra sleep sends them packing.  This one didn't like those ideas.  I tried everything I knew to do.  It would let up a little every now and then, but then flare right back up.  The pain was keeping me from class and making me cry (something I don't do often in response to physical pain).  On the 8th I finally gave in and went to Urgent Care.  They gave me drugs for the nausea and a shot for the pain.  They told me to go home and sleep it off.  They were wrong.  I took more drugs at home (really strong stuff) and they didn't help either.  I ended up cancelling my babysitting job for the evening (which made me feel even worse).  By early evening I had tears running down my face again.  The drugs weren't working.  A tearful call to my neurologist landed me in the emergency room for some IV drugs, a CT and other tests.  The IV drugs succeeding in knocking me out (the 50mg of IV Benadryl may have had an effect on that).  I slept that night, but woke up in just as much pain as before.  
Monday was another call to the neurologist and Thursday morning found me sitting in his office.  There was no more playing around with normal drugs.  It was time for the big guns.   He hit me with everything he could think of and was successful.  The headache was gone by Wednesday.  But, so was my consciousness and wakefulness.
I slept from Wednesday through Saturday, pretty much nonstop.  A friend was over to help me out with something on Friday or so and while I was eating my dinner I fell asleep more times than we care to count...
Things haven't equalized yet and won't for awhile.  There will be another med change later this week.
Also, one of the meds that I was on to wipe out the migraine also wiped out my immune system and I've got a good case of the crud (which makes it harder to tell if I'm reacting to my new meds or not...just for fun)
It's also Advent; the second busiest season in the church year.
And it's finals week.

Prayers are much coveted.  Prayers for strength and for healing, for coherence and focus, for wakefulness at appropriate times and rest at appropriate times.   Praise for understanding professors and friends who help out with the little things and the big things.  Praise that our G-d is good.  All the time.

How to convince your stomach to produce too much acid

1. Go to graduate school or seminary.
2. Get a urinary tract infection (UTI).
3. Instead of going to the doctor for your UTI, try and take care of it yourself with cranberry.
4. Consume about half a gallon of cranberry juice every day.
5. Skip school because you are in too much pain to go to class.
6. Finally go to the doctor when the pain become unbearable (after about a month of self treatment).
7. Take 10 days of the strongest antibiotics the doctor feels like giving you.
8. While taking the antibiotics, travel to a funeral in another state and back (9 hours of driving each way).
9. Miss three days of school right before midterms because you are going to the funeral.
10. Continue to drink cranberry juice at incredible rates while on the antibiotics.
11. Survive midterms by staying up late, eating lots of greasy food, and generally not caring well for yourself.
12. Finish the antibiotics.
13. Realize that you are still in pain and convince yourself that you still have a UTI, because it seems like the most pleasant option.
14. Drink more cranberry juice.
15. Add apple cider vinegar to your plan for kicking this UTI in the behind.
16. Drink more cranberry juice.
17. A week after the antibiotics are gone, realize you are still in pain and it's not getting better.
18. Go to the doctor again.
19. Let the doctor poke you where it hurts.
20. Discover that your stomach has decide that producing massive amounts of acid is the best way to get your attention.
And this my friends is how you convince your stomach to produce too much acid.
So now I'm on a low acid, non greasy, non spicy diet as well as acid reducers for the next two weeks to see if that fixes the problem. If not, it will be back to the drawing board again. 
 Unfortunately, most of my favorite foods fall into the categories of acidic, greasy, or spicy (or some combination of the above!). I suppose the bacon I ate the day before going to the doctor was a bad idea, as was the apple cider I had been drinking like it was going out of style and the cranberry juice and the cinnamon and, and, and....
It's definitely been a learning curve. I learned to broil fish today instead of pan frying it like I usually do. I'm still trying to figure out what to do with my Sunday chicken to eliminate the grease. The best option seems to be to boil it, let it cool, scrape the grease off and then do something with the meat. Not quite sure what yet. Maybe chicken salad or some non-spicy type of chicken tortilla, though that doesn't sound too awesome. 
I'm open to suggestions, so if you have suggestions on how to eat "bland" (as the doctor so appealingly put it), please, please, let me know. Otherwise it's going to be a long 2 weeks!

So I've been rather silent lately.  My apologies to all of you who keep coming here hoping to find something new to read and then not finding anything at all.  The biggest reason was that I pretty much slept from Thursday through Sunday.  I've gotten some sort of bug that just has me down and out.  Even if I wasn't sleeping, I was just laying there, existing.   Somehow, by the grace of G-d, I was up and able to preach on Sunday evening.  I'm quite sure that if it hadn't been for his good grace, that would not have happened.  It was a very very small group Sunday, the smallest I've every preached to.  Including the elder, the pianist, and myself there were 7 people.  I was sad at first, but then remembered the promise of our Lord "wherever two or three are gathered in my name, I am there with them" (Mark 18:20).  I was blessed knowing that the Lord was there with us, even though we were few in number.  And I was blessed when people told me afterwards that they were blessed by the Word.

Tomorrow morning I head to Iowa for my Uncle Paul's funeral.  In all technicality, he is my mom's uncle, but on that side of the family, everyone is Aunt or Uncle (gender dependent) whether they are mom's cousins or uncles or aunts or whatever.  I got to see him in Summer 2010 at a family reunion.  We took a picture of the 3 (!) generations of twins in the family.  I'm so glad that we got those precious photos.

From Top to Bottom, Left to Right:  Aunt Polly and Uncle Paul, Moria and Taryn (almost 19), Arianna and Kalvin (4)

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. 

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?

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.

How Not to Study for Midterms

Back in December I wrote a post about how to study for finals, now you get the "how not to study for midterms post", because really, it takes skill to study as awfully as I have this time around.  I do not recommend this.
1. About a month before midterms, get a sinus infection
2. About 3 weeks before midterms, get influenza and miss many classes.
3. About 2 weeks before midterms, while you still are trying to get over influenza, get mono and miss some more classes.
4. Sleep pretty much anytime you are not actually in class because you have mono.
5. Agree to preach the Sunday after midterm week so that you can stress about that during midterms.
6. The day before midterms, have a severe allergic reaction and go to the hospital.  By doing this you will end up drugged and groggy for the next week, thus impeding both the studying for and the taking of, midterms.
7. At about 5pm (or maybe 5:30pm) the day before take a large dose of Prednisone (60-80mg...I forget how much it actually was), so that at 3am the day of your midterms you are wide awake with a kangaroo in your brain and hungrier than a bear.  The kangaroo will impede both further sleep and effective studying.
8. Pray for understanding professors.
9. Show up to your first midterm a little early and explain to your professor what has happened.  Convince him to let you take the midterm early next week.
10.  Realize that you have about an hour and half of coherency between your 4am dose of Benadryl wearing off and your prednisone kicking in and your next dose of Benadryl.  Find your second hour prof and convince him to let you take your second hour midterm during first hour, since you'll be more coherent then than an other time during the day.
11.  Take your second hour midterm, go to chapel, go home, take your next dose of Benadryl and watch a Disney movie while you snooze on the couch.
12. Hope that you never have another round of midterms this bad.

Diagnosis: Mono

There is a post coming, sometime in the near future, that will have my thoughts and reflection on something of substance...there are a couple already in the works, but for now, an update.
A week ago I posted about being sick and the doctor thinking I had influenza or mono.  At that point they had taken blood and were waiting for results.  I got a call from the doctor today, asking me to call back and get my test results. In Canada, that's usually a bad sign...Firstly, they rarely call for "normal" test results. Secondly, if they are calling for "normal" results, they just leave a message on the answer machine.   So you can imagine what was going through my head as I dialed the number to return the call, especially since the doctor had said at the time that my thyroid appeared to be a little swollen (it was her first time ever seeing my thyroid though).  I made the call and after being transferred to another line and being on hold for awhile, talked to a real person (I think she was a nurse). My thyroid was just as functional as it usually is, so there was no troubles there.  The mono test however, was positive.  I definitely have mono.
The good news is, I am doing better than I was. Yesterday was my first day in a long time that I did not need an afternoon nap, and today I even made it to the pool to get a short, but much needed swim in.
The not as good news is, I may have pushed a little too hard today and might have to pay for it tomorrow.
Here's what I think actually happened in the saga of being sick:  I got a sinus infection first, around the end of January.  Then I got influenza somewhere around the 10th of February.  Then, as I was recovering from influenza, I got mono.  So for awhile, I had both the aftermath of influenza and mono at the same time.  (Note:  this is not recommended.  Ever.).  I'm pretty much over the post-influenza junk (the reason why I've been feeling better-ish), but I still have mono. Which, in comparison to having both mono and influenza, is actually not that bad.   The hardest part now is being patient and not pushing myself too hard too fast and letting my body heal (and remembering to drink lots of water, because according to my roommate, that will drown the mono).
Please continue to pray for healing and for patience, especially since I am going into midterms this week.

Maybe Mono

So I went to the doctor yesterday...I'd been sick for awhile and just wasn't really getting better. I also needed a prescription refill, which is why I'd made the appointment in the first place (and in general, I just needed a doctor other than urgent care, so this appointment was taking care of lots of things).  I talked to the doctor about the prescription I needed refilled and then talked to her about being sick.
Her answer:  I either have mono or I am dealing with the aftermath of influenza.  We're waiting on blood work to confirm or deny that it is mono.
In either case, I'm supposed to be resting as much as possible.  Which is absolutely not wonderful.  Seminary and resting don't exactly go hand in hand.
If you are a praying person, please pray for me. Pray that I am healed quickly.  Pray that I have the patience to deal with having mono.  Pray that I find ways to rest.  Pray that I figure out how to keep up with school while being sick.
Thank you.