Saturday, November 17, 2012

Three Months

Well, David and I have made it to the three month mark.  And what can I say?  I am incredibly blessed to have him in my life. A lesser man would have turned tail and ran when faced with the challenges that we have had these first three months, but David has stuck by my side through it all.  Every time I was in the hospital he was right there with me, as much as the hospital would let him be.  On the days I didn't have the energy or the ability to tie my own shoes, he tied them for me.  So basically this post is a public shout-out to how awesome my husband is. Because he is amazing and I am so blessed to be married to him.

Friday, November 16, 2012


The other day my husband lamented to me that no matter where he goes, as soon as he steps out of our apartment, people are asking him whether or not I am better.  I understand his frustration.  I get it too.  Everyone wants to know if I'm better.  But there's a problem with that question.  It begs a return question of "better than what?"   Better than I was last summer when I could drive out to Mapleton Organic and ride Emma to my heart's content?  Better than I was when I was in the hospital hooked up to a morphine drip for pain following my TIAs?  Better than yesterday when I had energy to actually do stuff?  Better than three days ago when my energy was so low I was nearly catatonic?  Better than you?
Basically questions about my well-being that include the word "better" are useless.  I'd say this goes for just about anyone living with a chronic illness and/or mental illness.   I get it.  You're concerned and want to show your concern.  Or you're curious.  Or you're just plain nosey.  Whatever.  But using the word "better" won't get you anywhere.
If you really want to know, if you really, genuinely are inquiring about the state of my health or well-being, try rephrasing your questions.  Ask specific questions.  Ask how I'm doing.  Ask whether today is a good day or a bad day.  Ask if I've gotten any sleep the last few days.  Ask, then accept it if I don't feel like answering.  Because I can sniff out just plain nosey pretty quickly.   But please, don't ask me if I'm better.

Sunday, November 11, 2012

4 years...

Four years ago I sat in my college dorm room talking to a friend online.  Suddenly the room felt funny.  I told my friend that I didn't feel very good.  That was the last thing I said to her.  When I didn't come back online or respond to her messages she called a mutual friend who lived in my building (the friend I was talking to lived across campus) and asked her to check on me.  The friend who lived in my building found me on the floor of my dorm room, in a semi-conscious state.  What we didn't know then was that I had just had my first seizure. All we knew for sure was that my head hurt and I was tired.  I went to bed and my friend checked on me frequently throughout the night.  (What can I say?  I have some pretty awesome friends). 
The next day, when hanging out with some friends I had a seizure.  It was witnessed and there was no doubt as to what it had been.  We headed to the hospital and my journey began.
The initial prognosis was not good.  The initial scans of my brain showed a spot that they believed to be a tumor and a very large blood vessel that they thought was going to explode.  I was told that I was living on borrowed time. The large blood vessel in my brain shouldn't be that large and they figured it would rupture sometime soon.  I was started on anti-seizure drugs as well as painkillers (I had a wicked headache that would last for months).
I was referred to specialist after specialist and my life consisted of waiting for appointments and getting conflicting reports from them. In between, I had seizures, often half a dozen or more a day, and I slept.  
Four years later a lot has changed. In the summer of 2011 we finally got a solid ID as to what Spot is. I'm on medication that controls the seizures for the most part, and have adapted to life with seizures, as well as anyone could. 
But there are things that they don't tell you about living with a chronic illness. They don't tell you how it will impact every aspect of your life.  If affects where your go or don't go for school.  It affects whether or not your can work and if you can work it affects what kind of work you can do. It affects your family.  It affects your mate. In short, it affects everything. 
Over the years I've tried to explain to people how it affects me.  The best explanation I've found so far is something call the "Spoon Theory".  I encourage you to click on the link and read it.  It applies not only to how the seizures affect me, but also to how my mental illness affects me.  Both limit the number of spoons I get each day. 
Four years ago I had no idea where I'd be. I have no idea where I'll be four years from now. 
But that is life. And that is my life.

Tuesday, November 06, 2012


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.

Friday, November 02, 2012

Walking the Broken Road

This isn't an easy post to write, so I'm just gonna get some stuff out of the way before I start.
1. I'm writing this to try and quell gossip and rumors and general untruths.  In my experience the best way to fight gossip is to put the truth out there in an indisputable way.
2. I am not looking for pity or sympathy or anything like that.  I simply want the truth out.
3. Nor do I need anyone telling me that I was a failure, that I should have prayed more or sought after G-d more...My inner critic does that enough.
4. This post would be easier to write if I were writing about a broken arm or broken leg or having cancer, but that's not what I've been given to write about.  What I do have to write about is the horrible truth that on Sunday night I broke the one promise I said I would never break - I tried to end my own life.

Nothing happens overnight and neither did this.  As any of you know who have been reading my blog for awhile there were a lot of huge changes...getting married, moving, new school, etc, etc.  Kinda sorta big things that were causing me to feel a little out of control. Then an "oops" happened.
David and I got pregnant.  I've been on Depakote to help control my seizures and if there is one thing to know about Depakote is that Depakote and babies don't mix.  At all.  So as soon as we knew we were expecting I started coming off the Depakote, and coming off it fast. What I didn't know was that Depakote was also a mood stabilizer.  Coming off of it quickly threw my moods for a loop.  I was up and I was down and I was all over the place.  Then, just before Thanksgiving, we lost the baby.   Enter crazy hormone adjustments from loosing a pregnancy.
Things got bad and I went to my family doctor and through a long and round about course of events I was admitted to a psychiatric facility and spent about a week there.  However, during the long and round about course of events my anti-depressant/anti-anxiety medication, Cipralex (Lexapro) was completely discontinued and I was not started on my new one (Zoloft) until 2 days before I was released from the facility.
The dose I was on was very low and very ineffective. And Zoloft is an SSRI, which means it comes with the black box warning that the risk of suicide increases during the initial adjustment phase, especially in teenagers and young adults. Three days after I was released from facility #1 I swallowed three bottles of pills, with the intent of going to sleep and never waking up.
It was no one's fault and no one could have stopped me. It was a decision that I made.
David found me shortly afterwards and him and my dad took me to the hospital.  I don't remember anything after that until about 2-3 days later.  Once I was medically stable I was transferred to the Emergency Mental Health Unit (EMHU) in Guelph, which in general was just a bad idea (there may or may not be a blog post on that subject alone later).  EMHU actually did more harm than good for me and everyone agreed that it was in my best interest to be discharged today.
My meds have been increased to a more effective dosage and precautions are in place to keep me from doing anything stupid if my moods go crazy again.  I'm set up with a counselor and lots of follow-up.   I have dropped out of school for the semester as it was just getting to be more than I could handle.  We'll see next semester if I try again. Or maybe next year.
That's where I've been and what's been going on.  If you want to be supportive, please pray.  Pray especially for my husband. Pray for our marriage.  It's really been through the wringer.   If you ask me how I'm doing, be prepared for the truth...and for the fact that the truth might not be very pretty. Be respectful if I don't want to talk or need some space. But most of all, be willing to be there, to pray and to listen and maybe even wipe some tears.
I've got a long road ahead of me and I'm going to do my best to walk it.  It will be slow, it will likely be painful.  But it's the road I have to walk.

Bluntly yours,
Joellen Ayala