Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Sunday, February 24, 2013

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...

    Sunday, February 17, 2013

    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. :)



    I get the honor of hanging out with the cute, cheeky little boy a couple times a week. I get to play with him while his mama gets some work done around the house.  In the first two photos you can see that he had blueberries with his supper and was very blue.  We fixed that at bath time. 

    This last was pretty low key without any major appointments.  The only real surprise was that I threw my back out mid week and could hardly move.  A trip to the doctor for some muscle relaxants and a trip to the pharmacy for the strongest pain killers you can get without a prescription and I got fixed up.  Today I actually haven't needed my painkillers or muscle relaxants and all.  Though I'm thinking I might take some tonight just to keep it from seizing up at night again. Prayers that my back would stay limber and not seize up would be great.
    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. *EDIT* This appointment isn't until next week.  I fail at schedule keeping sometimes. The appointment is the 27th, which is not this coming Thursday.  But you can always start praying early. *END EDIT*
    I got a fish tank for my birthday in January and we had 4 fish in it.  3 goldfish and 1 loach.  One of the goldfish and the loach died this week.  It was very sad.  We got a test kit and checked water quality and learned that there was too many nitrites and nitrates in the water (and just about everything else was wrong too...except pH and ammonia). So now we are working to balance everything else.  The two goldfish in the tank seem to be pretty much indestructible. 
    It was super cold this morning when we got up, so we had a wonderful hoar-frost.  For my non northern climate friends, a hoar frost is what occurs when fog literally freezes on to any structure it can attach to...trees, fence posts, fence wires, etc.  When the sun shines on it, it is wonderfully bright.  When the wind blows gently it starts to fall off and it looks like it is snowing.  By mid morning it is usually gone because the sun melts it.
    Frost detail on the fence wire.

    Front yard tree

    Sun coming up in the bush

    view out towards the road with the sun just starting to play over the tree tops. 

    Tuesday, February 12, 2013

    A GI-normous adventure

    *this post may be slightly graphic at times.  If you've been around preschool boys, you'll be fine*
    As some of you may know, last week I was scheduled to have an upper and lower GI series done (for the non-medically inclined that means they stuck a tube up my bum and a tube down my throat and took pictures).  I had been waiting for quite some time for this procedure - over a year since the process started (it should have been done 8 years ago, but that's a whole 'nother story) - so nothing was going to get in my way of having it done.
    As preparation I could not eat anything for 48ish hours prior to the procedure.  Since the procedure was scheduled for about noon on Friday, I had to stop eating Wednesday night.  Thursday I was still allowed clear fluids, but nothing solid. And then Thursday the "fun" started.  In order to get clear pictures, I had to be cleaned out.  Enter lots of really disgusting laxatives and many hours spent in the bathroom.  So many that we even moved my computer in there so I could work on school while I cleaned out.  By 10pm Thursday night I was no longer allowed to take anything by mouth - food, drink or meds.  Not being able to take my meds was my biggest concern.  I'd be missing two doses of my seizure meds, which generally isn't a good idea.
    By 10pm Thursday night we were also starting to grow concerned about the weather.  A storm was moving in.  A big storm.
    Friday morning dawned very stormy.  Lots of wind, snow, and ice.  The hospital where the procedure was to take place was an hour away under normal conditions.  We left about two hours prior to the time I was supposed to arrive at the hospital and took the van instead of the car because it had higher ground clearance.  We made it on time, but without much time to spare. More than a few times we didn't know where the road was, which was slightly problematic.
    We parked at the hospital and got me checked in.  Once I was checked in, David had to leave since visitors weren't allowed.  I'd left my watch with David so I had no concept of time.  I know that I changed and then read a bit until a nurse came in to start my IV.  She took one look at my hand, got a warm blanket and tucked my hand in to warm up and maybe pop a vein out for her to work with. I think at some point I drifted off to sleep.  Soon a porter came to bring me to the OR.  First she wrapped me in more warm blankets because I was still cold.  Why do hospitals have to be so cold????
    Once we got to the OR I set a new record for the doctor.  I was the first patient in 25 years that he could not get an IV started on.  He tried 3 or 4 times, then called for the anesthesiologist to come try.  He didn't have much more luck from the doctor.  Finally he sent a nurse to find a 24 gauge needle, which is what they use on babies. (big numbers mean smaller needles). Once he had the needle, he went for my foot.  I've had a lot of IVs and blood draws - nothing compares to having an IV placed in your foot!  Once the IV was placed I remember the doctor telling the nurse to give me a little extra sedation because they'd already put me through so much.  Then I don't remember anything.
    The next thing I remember is waking up in recovery and being given something to drink.  Then the nurses called David to come get me and I waited for him to bring the car around.  And waited.  And waited.  And waited.  Finally I texted him.  His response (and I quote) "I'm standing out in the cold of the hospital parking lot looking for someone with jumper cables..."
    Thus continued our adventure.  No jumper cables could be found.  We got mom's CAA number and tried to call them.  We couldn't get through.  We found a phone book and called a towing service to come jump the car.  They showed up in good time, considering that the storm was still raging and the roads hadn't been cleared.  They tried to jump the car.  No go.  The starter was dead.  I was still stuck in the hospital since I couldn't go anywhere until a car was waiting for me at the front entrance.  Our van was being towed and David was going with it.
    Enter wonderful family friends.  A quick phone call and a handsome man came to our rescue, picking me up from the hospital, picking David up from the shop and taking me to Wendy's to get something to eat.  Then we went back to his house.  But before we got there...
    We got stuck in the street before his house.  He trudged through the snow to get his cute little snow blower and blow a path out while David drove.  Safely inside we made a decision that we were not going anywhere that night anymore.  The snow was still falling and word from home was that things were still nasty.  An air mattress became our bed and we bunked down with friends for the night.
    The next morning the sun was shining and we headed for home, our GI-normous adventure completed.  I don't need another one like that for quite some time!

    Saturday, January 26, 2013

    January 26

    The snow is falling in big heavy flakes outside our window and I'm settled down with a cup of orange juice, David is listening to the sound track from Aladdin, and our three fish are swimming happily in their tank.  So far today I've baked bread, taken a nap, and worked out. (and cleaned up cria vomit, but that's something I'd rather not think too deeply on).  It's a good day.  And since it's such a good day, I thought I'd take a few moments and update everyone on what's been going on.
    This month has been especially busy with appointments of various sorts. We knew they were coming so none of them were really surprises, but they've kept us busy.
    One of the most exciting appointments of this month was to my audiologist in London to get my new hearing aid!  My right hearing aid had an unfortunate accident this past fall and met with an untimely death.  Based on the age of the hearing aid and the progression of my hearing loss, it was a better choice to replace it completely than to try and have it repaired.  So, earlier this month I picked up my spiffy new, blue, behind the ear (BTE), Quantum 12, Unitron, hearing aid.  See?
    The BTE style is new to me, but so far, I'm loving it, with one exception.  It pinches a bit at the top of my ear.  I see my audiologist again this week for a test in the booth and hopefully to get the tube readjusted so it doesn't pinch.  It has way more bells and whistles than any of my other hearing aids have ever had and one of the best things is I can wear it outside when it is windy and not be overwhelmed by wind noise!
    On the same day that I got my new hearing aid, I also met with my neurologist (also in London - it was nice to combine both visits in one trip, since London is quite a drive and it is winter).  The reason we'd requested the meeting with the neurologist was to see about taking me off of one of my medications, Depakote.  Depakote has many undesirable side-effects, and although it was controlling the seizures and helping with the migraines, David and I felt it was time to see about switching it out to something friendlier.  The neurologist agreed and we have started to put me on a drug called Lamictal.  It should also help with the seizures and migraines - with less negative side effects.  It will take a total of 14 weeks to put me on the Lamictal and off the Depakote, putting as near the end of April before the transition is complete, if all goes well. So far everything is going well, though I do increase my dose of Lamictal this coming week.  Prayers that the transition continues to go well would be appreciated. 
    That same day I also gravity checked a particularly icy spot in a parking lot and sprained my knee and ankle...and then thought it was a good idea to go to the mall to "walk it off".   I may have heard a thing or two about that from my physical therapist at my next visit.  Oops!
    Speaking of my physical therapist, I started physio early in the month to deal with a very painful hip.  The hip has been giving me trouble for many months now and it was just a matter of waiting for the physio department and my schedule to have openings at the same time.  Right now we are doing a mixture of stretches, ultrasound and electro-therapy to try and reduce the inflammation and make it not hurt.  It's going slow, but improving. It does involve driving to the hospital twice a week to get it worked on though, which eats up about 3-4 hours a week total (driving time + treatment time).
    The other big thing this month is that I have started school again.  I am doing 1 class, online, and so far it is going well.  I'm not even behind yet!  It's the same class that I tried to take last semester but had to stop when my health took a nose-dive. So far, I haven't gotten to any new material, but I'm processing the old material better now. 
    One last picture to close this off.  This is how David and Mauschen like to spend their lazy afternoons (when we have them...which is rare)
    (I may be guilty of tickling those toes when they are stretched out like that)


    Tuesday, November 06, 2012

    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.

    Tuesday, September 18, 2012

    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.

    Sunday, March 18, 2012

    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.

    Saturday, February 11, 2012

    Please Listen

    To those of you who work in food service, whether high end or fast fast food, to those of you who cook for other people, to those of you who share food with anyone, whether it is for a price or free.  Please read this.
    If someone asks you what is in something.  Please tell them.  Tell them everything.  If you don't know, tell them that. If they are taking the time to ask, the probably have a good reason.  They aren't just trying to be annoying or steal your secret family recipe.  So tell them.  Don't leave things out because there is a just a "little bit" of it in there or because you don't usually put that in there.  Be open and be honest.
    If someone asks you to leave a specific ingredient out, for example cheese or croutons on a salad, please listen. They are trusting you.  Don't assume they want it left off just because they are picky.  Sometimes that might be the case, but not always. If they say no croutons and you forget and put them on, don't just pick them off.  Make a new salad.  Same if they say no cheese.   Sometimes it's a matter of life and death.
    Think I'm exaggerating?  Mom and I stopped at a place where traditionally we've been able to get "Joy-friendly" food to eat.  I was tired and hungry after an afternoon of wedding dress shopping and also crashing from too many carbs at lunch, so I needed carbs to prevent the grumps from taking over the rest of the evening.  We went through the drive through.  Mom ordered and three times stated that we wanted no cheese on the salad.  No cheese. The person taking our order repeated it back to her.  No cheese.  We got our meal and I opened my salad and began to eat.  I spit most of my first bite back out.  There was cheese on the salad. It was dark so I hadn't seen it.  Mom took the salad back in and complained. I took my first two doses of benadryl and a dose of ventolin. They remade the salad and we continued home (maybe 5-10 minutes).  Shortly there after I took my third and last permissible dose of benadryl.  Followed very quickly by an EpiPen.  The next three hours were spent at the hospital while they tried to stabilize me and observed me.  One bite is all it takes.
    So if you are giving food to anyone, for any reason, at any time.  Please, listen to them.  It could change their life.

    Thursday, December 29, 2011

    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.

    Friday, June 03, 2011

    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?

    Saturday, April 16, 2011

    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.

    Tuesday, April 12, 2011

    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.

    Saturday, March 26, 2011

    Home

    I'm home from the hospital and we don't know anything new.  My brain did not cooperate at all.  I will follow-up with the neurologist in about 2 weeks.
    I'm tired and my head is fuzzy, but laying in a hospital bed for a number of days will do that to you.
    I'm very grateful for everyone who called, came to visit, etc. while I was in the hospital.

    Friday, March 25, 2011

    Update

    I know, real creative title. In my defense, I was up all night playing "make Joy's brain angry".  It didn't work. Which is good, bad, and frustrating all at the same time.  It's good because it means my brain is not going crazy and that is always a good thing.  It's bad because we were hoping my brain would go crazy so they would know what is going on. It's frustrating because we still don't know why I have seizures.
    My friend Mommy Lisa came and spent the night with me, keeping me awake.  About 4am or so we resorted to singing camp songs, complete with actions.  I'm sure whoever was watching my video was amused.  I'm super grateful that she could come and I'm super grateful for her profs for being so understanding.
    At this point I think the plan is to try one more time this afternoon and then send me home and have me follow up with neurology in Holland.  The EMU close at 7 tomorrow morning, so I know i'll be out of here by then.

    Thursday, March 24, 2011

    Making Joy's Brain Angry

    So, I had a ridiculous number of seizures over the weekend/the beginning of the week.  They put me in the hospital yesterday and wired me up (I counted 50 some wires).  And my brain decided not to cooperate.  I've had no seizure activity since coming in the hospital.  So the neurologist has decided that we are going to play a little game called "Make Joy's Brain Angry".  Basically this entails me not being allowed to sleep until tomorrow afternoon and they have said they are going to make me ride a stationary bike and flash lights in my eyes to try and make my brain grumpy. We'll see if this is a successful game or not.
    In the meantime, I hang out here, in the EMU.  This is a rather boring EMU, compared to the last one I was in. I'm in a room all by myself.  I have a TV and a fun bed that goes up and down. The bed has a special mattress that keeps moving.  At first it freaked me out, but now it's just cool. My bed also has bumpers on it.
    I'm considered a very high fall risk, so I'm not allowed out of my bed without direct supervision. So anytime I want to go to the restroom or anything I have to call a nurse.  I'm allowed to be on my computer, but not when it's plugged in.  So it's a bit limiting.
    I have my crochet with me so I've been working on that a bit and watching TV and visiting with people who come to see me. (I had a wonderful visit from two people from home who happened to be in the area and some folks from school have been out).
    My favorite fun story from this morning, is that about mid morning I got a phone call.  I didn't recognize the number but answered it anyways. It was St. Mary's.  They said they'd gotten a referral from Holland Hospital and I needed to make an appointment to see one of their neurology people.  I told them I was upstairs in the EMU.   Communication Fail.  :)
    So that's the update as of now.  I'll keep you posted on how the game of making my robotic brain angry goes.

    Wednesday, March 23, 2011

    In the hospital

    Those of you who read my last blog post know that my seizure count increased dramatically over the weekend.  Yesterday I at least doubled my seizure count.  I ended up in hospital because I was having trouble breathing and such.  I also developed blurred vision in my right eye and severe head pain.  They discharged me from Holland Hospital with plans to admit me to St. Mary's in Grand Rapids on Thursday.  Grand Rapids called this morning and decided they wanted me there today.  So I'm in St. Mary's.
    I'm in the Hauenstein building, room H334. Visitors are encouraged.

    One of my indwelling electrodes.  You can sorta see the really fine wire coming out of my face.
    if you look close you can see the wires coming out of both sides of my face.  They are really fine.  Look by my shirt collar.
    all wired up
    side view of my wires.  There are 42 external and 2 indwelling
    I'm also on a heart monitor, but you don't get pictures of that.  :) Prayers would be appreciated, and if you are in the area, feel free to come visit.

    Sunday, March 06, 2011

    Lessons from an Epi-Pen

    Those of you who know me well, or have been reading my blog for awhile, know that I have multiple life-threatening allergies, as well as multiple non-life-threatening allergies, to both food and medications.  I carry two doses of epinephrine on my person at almost all times (exceptions: sleeping, showering, swimming).  In fact, I carry epinephrine on my person so religiously that we used it as a memory device for the Greek preposition επι meaning "on" because the epi-pen is always on Joy.  If you do not know how to administer an Epi-pen, please stop reading this right now and go read these two blog posts (Post 1, Post 2). Please read them.  They contain life saving information.  For real. If you know how to administer an Epi-Pen keep reading...
    Anyone who has ever used an epi-pen knows that it hurts.  Yes, it saves your life, but it also hurts. There is, after all, a rather large needle being forcibly pushed into your thigh muscle.  Anyone who has been with me when I have had an allergic reaction knows that I hate having to use my Epi-pen.  I will usually do everything possible to convince both me and everyone else that I really don't need it.  This usually includes taking lots of Benadryl and waiting until I have absolutely no choice but to use the Epi-pen.  By this point I am typically only semi-conscious (not breathing will do that to you) and unable to give the epinephrine to myself.  So someone else gets to do the honors.  Then it's usually a mad dash to the hospital where the doctors and nurses (and sometimes respiratory therapists) fight to bring me back to breathing on my own. It usually involves lots of needles, oxygen, monitors, collapsing blood vessels, drugs and organized chaos to keep me from dying.  As well as a lecture on using my Epi-pen at the first sign of a severe reaction instead of waiting, which I usually counter with some sort of excuse about the pens being so expensive and wanting to wait until I'm actually sure I need to use it. Overall, not a pleasant experience.

    Last week I was blindsided by a snack that was not as Joy-friendly as I was led to believe it was.  Within moments of eating it, I broke out in hives around my mouth and throat, my heart rate started going crazy, I got sick to my stomach, and shortly thereafter my breathing became labored.  After a brief moment of panic during which I thought I was home alone and mentally ran through a list of people who might actually answer their phones if I called needing a ride to the hospital (I try and avoid the ambulance if I can), I realized my roommate was indeed home and went downstairs to tell her that I had loaded up on Benadryl and was maybe going to need the Epi-Pen.  Because my roommate is amazing she was super calm about the whole thing and we waited to see if the Benadryl was going to do its job or not. After waiting 15 minutes for the Benadryl to kick in, and feeling it kick in but not reverse the reaction, I realized that I was going to need the Epi-pen.  At this point I was still completely conscious and could even still kind of talk.  I actually gave the epinephrine to myself for the first time, while LDK called the library where she had to work in half an hour to tell them she would be late (I have awesome roommates, just saying) and went next door to grab a neighbor to help me to the car (epinephrine makes me really woozy).   On the way to the hospital the epinephrine did its thing and by the time we got there, other than my blood pressure doing silly things (side effect of epinephrine), my vitals were good.  I still had hives, but I was breathing on my own with a large degree of success.  After a round of oral steroids and some meds for my stomach, they kept me for about 2.5 hours and then sent me home - no needle sticks, oxygen, monitors, or organized chaos.
    When all was said and done and I came out of the drug induced haze (okay, I'm still coming out of it and will be for a few days yet) I looked back on the whole ordeal and tried to figure out what made this particular reaction so different from past  reactions and what I could learn from that. The suspected allergen in this case was nuts of some sort, one of my major allergens. Past nut reactions had resulted in reactions similar to the ones described in the linked posts above.  It would take a couple days before I was anywhere close to back to normal and a week or more before the bruises on my arms would fade.  This time it was different.  Once I figured out that the prescription antacid that the doctor had given me was full of cornstarch and making me very sick and stopped taking it, I was pretty much back to normal (well, normal with a prednisone kangaroo in my brain).

    I finally figured out the difference.  I had taken the epinephrine early on. I knew it was going to hurt like crazy, but more importantly I knew I needed it.  Usually stubborn gets in the way and even though I know I need it, the desire to avoid the pain overrules the common sense.  In the end, it results in an even more painful process (trust me, having nurses fight to start IV's while your blood pressure plummets and your veins collapse is way more painful than a dose of epinephrine).
    As I thought about it, I realized that it is much the same way in my walk with Jesus.  I know that letting Him work in my life is going to be painful.  There's a lot of junk He has to deal with.  And I know I need Him to deal with it, because I can't fix it myself. But often, stubborn wins, and I try and fix things on my own.  And I fail.  In the end, the process of Him fixing things up is more painful than if I had stopped being stubborn earlier, because in the end, He always gets His way, just like in the end, the drugs needed to save my life always get into me.
    It's easier on me (and everyone involved) if I just take the epinephrine when I know I need it instead of waiting until I'm almost dead.  Likewise, it's easier if I cooperate with Jesus when He is trying to make changes in my life instead of waiting until I'm at the end of my rope, dangling between a rock and hard place, with nowhere to go except down, but I can't even really go down because I'm already at rock bottom.
    How would my life be different if I stopped being stubborn? Is it even possible?  And if it is possible, is it a good thing?
    Enough thoughts for now.   The kangaroo is waking up.

    Friday, March 04, 2011

    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.

    Thursday, February 24, 2011

    Baby Jude

    Baby Jude came through surgery wonderfully and is headed home.  Thank you all for prayers.  Please continue to pray for him as he recovers, that he is not in too much pain and recovers quickly.  Here is another picture of him (Just because he is cute)
    Praise G-d for his wonderful work of healing!

    Wednesday, February 23, 2011

    Prayer for a Friend (a really cute friend, I might add)

    So one of my friends is having surgery on Thursday morning.  It would be really swell if you all could pray for him.  His name is Jude and he is super sweet.  I love him a lot.  See how cute he is:
    Mr. Jude is showing off that he has learned how to stand
    It's a relatively minor procedure, but he will still have to go under anesthesia, which is never fun.  He was born without the bones in his thumb being properly formed, so on Thursday, if he is healthy enough, the doctor is going to remove his thumb.
    Please pray that the surgery goes well and that he is not in too much pain.  Pray for his mom and dad and siblings too.  It's a big deal for your little son or little brother to have surgery. Please pray also for good weather for travelling. The hospital is about 2 hours away from where he lives and it is winter in Canada....
    Here's a picture of me with Jude and his sister and brothers:
    Such a sweet, squirrelly bunch.  I love them lots and lots.