The first time it happened in public...

The first time it happened in public was in the South Tower Lobby. Sitting in my maroon wheel chair hugging my bag as if it were a shield, I looked around.... exhausted and gleaming mothers with newborn babes in arms and congratulatory balloons, white coats briskly walking by with gaze hardwired on the elevator and work that lay ahead, Philippinos in hello-kitty scrubs seeming to hum conversations with laughter in reclined leg-leaning, awkward teenagers texting furiously with hair covering one eye while the other would occasionally dart back and forth to scan the room and make contact. And me, the pail, anxious patient in the wheelchair waiting for pickup by the automatic doors. Where was my dad? What was taking so long? Before I could think of possibilities this overwhelming rush of adrenaline filled my body, my muscles began to tighten like over-tuned guitar strings, my neck started arching back and then I knew, I knew it was too late and I knew what was going to happen. My head flung back, my body was wildly convulsing, my limbs curled and shook madly with no control. Immediately I tried to “breath slow” but this was not going to be a short one. Gerry, my CP and wheelchair-pusher with a thick, red horseshoe mustache knew all to well what was happening and held my head in his chest and calmly in a firm voice began to coach my breathing. My tears soaked his teal scrubs, and though his grip held my head (and thus my vision) tightly to his chest, I knew everyone in room was now looking at me... and the awkward teenagers were probably ecstatic to be able to send this video-text to their friends. Finally my body began to calm down and eventually allowed me to slump down in my wheelchair, exhausted, depleted, and mortified.

So... this is my new life.

To explain how I got to this moment, I need to step back a few weeks. Mid-June, my body changed. Completely. Overnight, my stomach felt like it was was being twisted and wrung out like a wet rag and I began to have insane diarrhea, 30-50 times a day. It wasn't long before I was hospitalized for dehydration. What had happened? I was seeming to recover so well. I was at one of the top GI hospitals in the world (and the best on the west coast) so I figured everything would be sorted out soon enough. Well, it wasn't. Exhaustive tests were run, cameras were swallowed, medical team after medical team gave their best shots, and then finally their “Dr. House” was brought in. Everything made perfect sense. I had to have carcinoid-syndrome, a rare type of cancer. It explained everything, the too high or too low hormone levels, the golf-ball sized cyst on my ovary, the low cortisol levels, rapidly deteriorating health, the pain, the insane diarrhea... it all made perfect sense! After running labs (which take 10 days to get back because of their rarity), I began the anti-carcinoid syndrome drugs and was just waiting for the results to lead us as to the next step of finding/removing the tumor.

At this point I was too weak to go to the bathroom alone, and each day I felt like that much closer to death, but the injections were helping with the diarrhea. There was hope. There was a diagnosis.

Days went by, I seemed to get weaker and weaker, but I still had that hope that they could just “fix it” once they layed out the fine print. So now was the waiting game....

Among this, a few nights into my hospital stay I was given some benedryl for some mild allergic reaction. Immediately I felt “odd,” nauseas, frail. I made it back to my bed just in time to start what would be my first seizure. They were violent, unpredictable, short, long (some lasting 25 minutes), scary, painful and oh so exhausting. I remember one long night, after having one, I turned my head over on my tear-soaked hospital pillow, stared at the out-of-focus wall and struggled to ask my nurse, “why...? why is this happening?”

Her comforting words were kind, but they were just that, comforting, not informative. What the hell was going on? 24 hour EEGs were run, more specialists brought in, and then finally after a multi-doctor conclusion, they informed me of the inconceivable. “They are Psychogenic Non-Epileptic Seizures (also knows as PNES). It's a type of... well, Conversion Disorder.” Basically, it's a psychological disorder that happens to people who have undergone some sort of trauma. Some go blind (I occasionally would), deaf, paralytic, or even have seizures... converting internal trauma into something pseudo because of an inability to cope with the internal stressors...sort of an odd way of preservation because reality is too difficult to deal with. Ok. I believe it. It makes perfect sense considering the last few months of my life with traumatic events or diagnoses happening to my children on top off dealing with health issues. This is the truth, I have this disorder, and as difficult as it was to accept in the beginning, I am gaining a peace with it as I know the seizures (and blindness and hallucinations) will eventually calm and cease with persistent psychiatric care. I WILL get better. This is just another illness and I am willing to treat it as such.

Ok, but back to the carcinoid-syndrome... what happened with that?

The labs came back. Dr. Yu (aka: Dr. House) entered the room. With eager ears I waited. “Well... 2 of the tests show that there is NO carcinoid. It must be something else.”

My praying family was overjoyed with the news, but to be honest (and I know how strange this appears), I was disappointed. I was disappointed because we were back to square one. With no real diagnosis, there is no real treatment... there is no hope. I do not want to be one of those patients labeled “failure to thrive” due to a diagnosis of exclusion. I've had chemo, I've major organs removed, and I was ready to do it again if it lead to a hope of a better life.

But there I was, weeks into my hospital stay deteriorating with no direction to go. To explain the inner turmoil that was going on, I think it will help to share an excerpt of an email I sent during my stay:

“...Right now I'm at a pretty low point myself. I've been in the hospital for weeks with still no diagnosis as to why my body is rapidly deteriorating. It's an awful feeling... not knowing if my darling little girls will ever run down the hall at 6am and jump into bed into my arms ever again, probably something you might have experienced, and as a parent, I think there is nothing that can break your heart more than knowing that they might lose the only one in this world that was meant to be their mother. I am so angry and confused at this point, but I know that in this desperation, Jesus is calling me and begging me to let him comfort me right now. I think I've just become detached. Life is so damn cruel sometimes. But I know better, I know our savior and our relationship is still a process and know he has blessings prepared for my family even if I'm not an earthy part of that.”

Soon I began to have a revelation... I didn't have to be there (or even die there if it came to that). After realizing that if the hospital was there to barely keep me alive, well at least I can do that at home and be with my family. So after convincing the Hospitalists that I would receive home-health care, followup with outpatient services, and be mentally healthier at home, I finally came home. So here I am, about a week home (with only one hospital visit). The seizures are improving dramatically, and though my health is still teetering on the edge, I am home.

I am still waiting for an answer, but am getting stronger with ups and downs.

So there... there is my response to everyone who keeps texting or calling me wondering what in the world is going on. I am still very weak, but am going to try even harder to figure this thing all out.

Thanks for all your prayers and kind words during this time. Our family truly thanks you, and thank you to the “anonymous person(s)” for their gift, it's been a huge and well needed blessing on our family.

"What the hell?"

 
When I was growing up, there was a house around the block with wild untamed trees and vines on a vast (or vast by our so-cal standards) lot. Every time we would drive by it, I would gaze out the back of the family Suburban's tinted glass and dream of having a family of my own, and I never questioned that we would be able to have a place like that, whenever and wherever we wanted in the world. As a kid (or at least as a Johansen kid), thoughts didn't cross my mind about how the world is such a limiting place, and that one day something even so simple as your health will be stripped from most all of your determination (After all, I was the playground relay-race/monkey-bar-climbing champ that could outrun any other little spry kid in my age category). In my mind, as an adult, material and circumstances where to be as clay, moldable in my grown-up hands... because, after all, that's what “adults” do. In my little ignorant and unexplored mind, “grown-ups” control their lives; they are these walking giants who puppeteer their destinies and are often very idiotic and ridiculous (something that I of course would never be). I actually remember this fragile little thought in my inexperienced mind: “why on earth where my parents not at Disneyland everyday gorging out on churros and frozen lemonaid?”

Well, there is no other more accurate description to explain the reality of adulthood than this simple phrase: life happens.

And when it does, it hurts. It changes. It grows your heart, expands your mind. It is inexplicable and painful in all of its' wonder and beauty, and all of these truths I had learned through predictable life circumstances like graduating high school/college, and those not so predictable like losing my first baby.

So, why then am I still struggling soooo hard with the lesson that I AM limited by my health? To explain the last few weeks (after doing so well with recovery), there is no better way to explain it than to quote my GI doctor during my last stay at Cedars last week (in reference to my deteriorating health and trying to make sense of it all): “What the hell?!”

And that's it. That's about as much as I feel like writing upon that subject right now. Annoying details are unnecessary because amongst these setbacks, there are so many things going on that cut deeper than any of my health issues ever could (something that I even thought impossible a few months ago), but to be consistent with this blog and save some privacy, I will only share my health struggles. What events, what trauma, what interpersonal wounds, what new diagnosis’s with my children, what loss of control of mind and sensibility and all that has transpired in these last few months of my life have made me a completely different person. So much so that I don't feel comfortable sitting down with an old friend because I feel that they unfairly do not know that who they are sitting next to is no longer the same girl anymore.

But despite all of this, I am still a wife/best friend to Jon, still Lucy and Isla's mommy, still Miss Laura to my adoring art students, still a frequent patient at the ER, still a friend, and most of all still a child of God trying to make sense of this life.

To be honest, I'm not sure there is any point to any of these thoughts. Maybe I'm still drugged from this morning's anesthesia and should take the advice of not making any “decisions” (like posting on the internet) for 24 hours. Either way, I feel like the only way to make sense of today is to be slightly vulnerable, which is strange, that I would broadcast online in a hidden web address what I do not commingling share with even most of the closest people in my life (I know it's weird, but it' just how I work).

So, no point to this one. Only that I'm still here and still being shaped by God.

I'll write more when I feel a little more sane.

Not the End

A little over a year ago, Lucy calmly paused in her play, and in a state of bewildered contemplation, looked up at me and said: “Mommy... don't worry. One day your tummy will feel better, and then you can play with me.”

These few words have played in my mind countless times this year, echoing a deep feeling of quilt for obvious reasons. The only way I would be able to console myself was with the idea of the day that I would wake up from my third surgery and would dramatically utter, “it... is... finished.” I know, it's very laughable, my pathetic mental fantasy. But I would always mentally postpone thoughts that were too difficult to deal with (like Lucy's sweet little words and her concerned green eyes heavy with burdens no two-year-old should have to bear) to this particular spot in my future, because then I thought it would all be over.

On February 12^th, I underwent the third surgery. Everything went well. I underwent less anesthesia and had little pain intervention, so my body tolerated everything much better this time around. And though my theatrical fantasy didn't play out like I thought and despite waking up to world of unrelenting pain, I have never been so excited to look down and see nothing but skin and surgical tape. And really, for the first time in about 3 years, everything went right.

So here I am, it is “over,” but new phrases are repeating in my mind that I suppressed months ago like my GI doctor saying: “Laura... you need to understand something. Your life will most likely improve, but you need to understand that you will have a new sense of 'normal.'”

The truth is, I'm not “normal,” and that's a really hard thing to accept. I thought that at the end of this, I would be invincible again. But I'm not. I'm still having stomach issues as my body tries to adjust to it's new organ-remodel, and no amount of Ensure will every give me enough nutrients/energy to get through the day without fatigue. I'll never live life again without "health" being on the front of my mind (something I was brutally reminded of when a trip to the park in the exposed sun turned into a Lupus flare-up). So, for the last few weeks I have found myself wrestling with the same feelings that I have felt through many tears this difficult year, and again, asking "why." Why.... why do I STILL struggle after going through all of this? I found myself asking God: "why....? Didn't I learn my lesson? Haven't I suffered enough? Haven't Jon, Lucy and Isla all suffered enough? It's not fair. They deserve better.... they deserve a wife, a mother--- one that isn't bound by her flawed, earthly body."

But here's the thing: I am earthly, I am bound by this eroding body. We all are. I wish that I could put an enlightening capstone on the end of these last few years that would have some profound resolution, but only now, I am just realizing that my “health journey” is not over, nor ever will be... this is my life. And as far as 'struggling on this earth,' well that is life.

And I'm okay with that because I have Jesus.

God's work is never done.

Understanding Ulcerative Colitis Treatment Options

uc101.blogspot.com 
... this is for anyone who suffering from Ulcerative Colitis, Chron's or any other digestive disease who is facing daunting treatment options.

Noticing

Isla – popsicle breath, paint encrusted finger nails stroking my neck, warm soft cheek resting on my collar bone, big blue eyes looking up adoringly- blinking as the bright sun rays hit them at the height of each sway in the rocking-chair, ears eager to hear the next note of the familiar lullaby, curved corners of the mouth trying to suppress an overwhelming excitement to hold the complete attention and affection of Mommy

Lucy – sitting on her knees in a chair three times her size; hunched over a table populated with crayons, markers and cookie crumbs, chubby fist awkwardly clenched and furiously coloring away what she knows will be the next masterpiece to the person who matters most: Mommy; eager to finish for the proud moment when her artwork is acknowledged with an over-excited gasp and quickly pinned to the fridge... and then a moment of pause, an interruption in process to look up and search the room, eyes squinting and scanning until they lock into mine, then a smile so big that her eyes disappear into wrinkly folds of freckled cheeks, and in that moment of pause there is no need for words to tell each other how deeply we love each other

Why these memories? Why notice the details of a single moment, intentionally storing the sounds, smell, temperature of my children?

In the face of darkness, we only then notice the light... that there even is a light to look at or look for. I have been a Christian for many years but am not proud to say that you probably wouldn't know that most of the time. Like so many others, it's usually not until I desperately need God that I remember how small I am, how fragile life is... how pathetic and depressing life is without knowing that there ultimately is meaning and purpose to everything and the choices I make. I can honestly say that without God intervening in my thoughts and circumstances, I would not make the choice to live here in this world and there is a very scary but real recognition that without knowing the truth of Jesus, I could very easily and probably would have made that happen. So why I am telling you all this... to depress you about my inadequacy as a human? No, quite the opposite. I want to encourage you in your darkest of moments. There IS significance, there IS purpose to this life... even though we are temporarily and partially separated from our creator and suffer in this world, God desires our full attention and responds to those who seek him in a very tangible way (even if it takes really sucky or stale times to realize the need to look for him).

So... In a strange way I am thankful, because if not for trials like Ulcerative Colitis, I would continue to live contently without understanding how absurd and aimless life is without Jesus as my savior. Without this dreadful disease, these recorded memories would be lost to daily routine because I would not have recognized the frailty of life and enjoy what God has given me.

(in direct response to a dear friend who greatly encouraged me with an email concerning my first post, thank you Joy)

What in the World is Ulcerative Colitis?

Today I sit with IV pole to my left, bottles of Ensure and Gatorade on my right and blank computer screen before me. So much of me is fighting this deep feeling of frustration and anger and the pathetic thoughts that so many people ponder of “why did this happen to me.” But the truth is, I'm not any more special because of the unfortunate circumstances that have happened to me. I am simply human, which means I am going to struggle in this life... and it's taken me a long time to figure that out. And as enraged as I want to be right now that I finally am home from the hospital but cannot be or play with my daughters because I am permanently on the verge of puking my guts out and hooked to a saline drip, I have to choose to acknowledge what I know deep inside (and has taken me a long time to learn): I don't have to be a healthy mother to be a good one.

To tell you how I got here, there is no other way that I can think of how to share this melodramatic journey than from the beginning. So, here it goes.

2007: Just married the love of my life (Jon). Started to not feel well, started bleeding when I went to the bathroom, was diagnosed with Ulcerative Colitis (an autoimmune disease that basically makes your colon one giant bleeding ulcer). I had no idea what that meant but it really didn't matter to me because I was able to keep it under control with standard medication.

2008: Moved to Italy and began teaching English, started to feel unearthly tired... so much so that I fell asleep on a student, but tried my best to ignore this strange sense of fatigue and bleeding.

2009: Back in the US, birth of my first daughter (Lucy), symptoms got worse during the pregnancy but again was able to control things with medication.

2011: My second daughter (Isla) was born... my body began to deteriorate like I never thought was possible. Days of feeling exhausted turned into days of laying curled up on the bathroom floor feeling like my stomach was about to rupture (which I later found out was a pretty accurate feeling). I could no longer work, do daily activities or take care of my children in the way I wanted to and had to learn how to rely on others. I sought expert opinions, upped my medicine to the maximum dose, tried every diet under the sun, tried homeopathic medicine, and began to max out on steroids which only made me mentally unstable. Nothing was working but something had to be done. After many tears and tough decision making, I started chemo. That only made me even more tired (which I thought couldn't be possible), more nauseous, led to a short haircut to accommodate my thinning hair, and then led to pancreatitis and another hospital stay.

What happened next is significant (only now do I realize this looking back).

2012: I was now making weekly trips to Cedars Sinai in order to see the top G.I. doctors in world and face alternative options. After looking at what my new future might look like, I cried for hours one night convinced that I was dying of something much graver and could not accept the idea that I was one of those people with severe U.C., one of “those” people that have things like their colon removed. I prayed for these other options to work, and gained a peace by telling myself I would never have to be one of “those” really sick people who end up having no other choice but to have a colectomy.

With that new feeling of confidence, I began exhausting every option of treatment there possibly could be. I tried weekly infusions of Remmicade, a medicine derived from mouse protein which ended I ended up developing a severe allergic reaction to and nearly died from. I tried Humira, weekly injections which lead me to develop another autoimmune disease, Lupus (a whole new can of worms). I tried experimental medicine, clinical trials and even strange prayer meetings.

I was now at a point where there was nothing left but the ultimate fear: a colectomy.

How did I get here? I did EVERYTHING I possibly could. It seemed so unfair and far too unreal for me to accept, so I didn't.

I continued to spiral downhill, leading to hospital stays and and 911 calls after blacking-out from loosing so much blood. It wasn't until September that I made a phone call to my Mom one morning to take me to the hospital... only this time I knew I probably wasn't coming back with all my organs. I tearfully hugged my girls and left. Two nights later I had emergency surgery to remove my colon which was only hours away from rupturing (which most definitely would have lead to death in my situation).

I woke up, looked down and saw what would consume so much of my life, my ostomy. I cried, no sobbed, for weeks. How could this be my life? I used to make fun of people like me. I thought I would never be able to go anywhere or see anyone again.

It's strange to me now, but I was so afraid to let anyone know what had happened to me. I was so used to hiding my disease... I would put on makeup, go out for a few hours, tell everyone I was “fine” before coming home and crashing. I remember being parked in a CVS parking lot, so weak that I didn't know how I was going to actually get out of the car to get my medicine, and with two crying kids in the back seat, I answered the phone only to tell my business partner that I've never been better and will see her Saturday.

So now I was pooping out of a bag... how could anyone ever look at me the same? How could anyone ever look at me without disgust? How was I ever going to hide everything?

I never had much chance to figure all that out before I started feeling really sick again, but this time it was different. I knew something was really really wrong.

After finding I had contracted C-diff enteritis (a deadly bacteria probably contracted from the first surgery), I went back to the hospital and grew incredibly ill. I knew this was serious after hearing some of the nurses talking about me, and I knew this was different by the way Jon quietly held my hand one night and didn't say a word with a forced smile trying to reassure me. The realization came to me that I might never see him or my darling little girls again, that I could leave them abandoned in this world without a wife or mother, and I couldn't bear the thought of how selfish and superficial I had become by trying to hide everything and by becoming consumed with how others saw me. I had to make a very conscious decision to see myself through God's eyes, how he created me and to find my worth not in my appearance but in how I loved and served others. The funny thing is, the people I cared about most never even looked at me and saw the disgusting bag that I would only see. Jon saw a beautiful, strong wife and Lucy and Isla simply saw their Mommy who loved them. It's a shame that I let myself miss out on that because of my own insecurities.

Well, once again God spared my life and I recovered from the C-diff, and I am happy to say that I am the 10^th person to ever contract this particular strain of C-diff in the small intestine and I am the 4^th person to survive it. God is faithful.

Once I accepted my new ostomy, I was able to live life again and enjoy simple things like being able to go to the grocery store, take the girls to the park, and sip wine in the evening with Jon on the back porch.

December 2012: Three months after the first surgery, I returned to Cedars for the second of the 3-stage surgery. I am blessed to be able to have a “j-pouch” created through these surgeries so that at my last one I will have the bag (ostomy) removed and I will be able to poop like a “normal” person. During this surgery, they removed the rectum (the colon is already gone), created an internal pouch from my small intestine and then connected that so I will have all the right internal plumbing. I went into the surgery healthy and the procedure went well. Everything looked good... until that strange night that changed my life. It is difficult to explain, so I will just tell what I remember.

I vaguely remember having a really hard time waking up from the anesthesia and hearing voices telling me to wake up and breathe (which went on for about 5 hours). (According to others, I was wheeled into my recovery room and was doing quite well, talking and sharing photos of Lucy and Isla with the nurses). My next memory is looking around the room (which was out of focus), seeing the lights of a Christmas tree (Jon had brought it in), and then trying desperately to make eye-contact with Jon because I hadn't been able to breathe for a while and knew I was about to leave the world of consciousness. I was unsuccessful. I immediately transitioned into... I don't know... a strong, warm, peaceful presence with God. I was with him, actually with God and I had never known such a sense of calm and reassurance. I don't know if I died or didn't and I won't say I went to heaven because I don't know. I didn't hear or see anything, but I do know that I have never experienced anything so real as that presence and peace with God. Clearly he spoke this to me “Laura, you are not going to die right now, and even if you did, I would take care of your children, they are mine.” I don't remember seeing anything, but it's strange because I do remember leaving and entering into a blackness. A cold, painful blackness, my body being thrown around, a tube shoved down my throat and voices yelling my name and telling me to breathe. I was in this weird state for a while until finally I was able to take a breath. I opened my eyes to a room of 30 plus doctors clapping and cheering that I was “back.” This was not so joyful for me though... I woke up in such fear not knowing if I was alive, dead or in-between. I was in excruciating pain, I can't even begin to explain the extend of it. I finally mumbled the words “Jon” and they brought him in. The doctors and nurses were still fussing about me and I had no idea what was going on. I finally was able to whisper “hurt” in hope that someone could help me, but a big Russian doctor with blue eyes held my hand and calmly explained to me that I was going to hurt, that they had to reverse the narcotics in order to bring me back. I still didn't understand and still didn't know if I was actually alive. Then I remember being asked to squeeze my right hand and push with my right foot. Success. Now they asked for my left. It didn't work. I didn't understand, but I still didn't know what was going on so I didn't even care at that point. I asked Jon over and over if I was alive, and after finally being convinced, he and a doctor were able to explain what had happened.

Because this surgery is so deep in the tissue and organs, they had to collapse my lungs during the procedure which lead to weakened lungs. In recovery, for some reason the combination of pain medicine had caused me to OD. Jon heard me gasping for air in my room, called the nurse who called a code blue, and after not breathing for about 5 minutes, they were able to breathe for me with tubes, and then finally the reverse narcotics brought me out of it. Unfortunately, this meant that I had deal with the pain of having had my stomach in a blender. For some reason, I was not able to handle narcotics. I wasn't even able to handle something as simple as Benadryl because it would stop my breathing, and so the next few days and weeks and I lay in agony wondering why I ever thought childbirth was that bad.

So, what does all this mean? Why did this happen to me, why did God save me, why did he tell me that? I had to make sense of it all.

The truth is, God directly addressed my greatest fear. Anyone who is married or has children knows how burdensome it can feel to live with the thought that everything that means anything to you can be taken away, or even worse, you could leave them alone in a world of hurt and longing. But as a Christian, that is simply not true. Ultimately, Lucy and Isla are God's and he will take care of them with or without me, and ultimately it is only God that I need in this world. Jon, Lucy and Isla are my greatest loves that I am entrusted with and am blessed to enjoy, but their permanence or mine isn't in my control. What a relief. I was so consumed with the fear of leaving them from the c-diff scare that I lost sight of the truth I gave my life to years ago, God, and that nothing can take that away.

So... here I am, the start of 2013. I am finally home (and my left-side paralysis was only temporary), but because I temporarily only have half of a small intestine (the other half is healing and will be working after the final surgery next month), I am malnourished and dehydrated so I am stuck to an IV pole. And how does this all relate to the idea of motherhood that I mentioned earlier?

My daughter Lucy's preschool teacher gave told me the greatest compliment of her the other day. She said that Lucy walked into class and proudly announced that she had decided that she is not going to be shy anymore... and then wasn't. The shy little girl who used to grab her Mommy's leg had overcome her fear and was able to respond to others' sensitivity and hurt with kindness. She, at the young age of 3 had figured out that much of life is about how you choose to be and act toward others despite your feelings and circumstances. Because of these trials, I have been able to show her that even when you really don't feel like it, you have the ability to choose happiness, to choose faithfulness, to choose hope, and that even when so much of life is out of your control, you always have the ability to choose to treat others with love.

Well, that's a summary of the last few years for many of you who have had no idea of what has been going on in my life. I only write this because I know that many sleepless nights I would scour the internet, reading people's blogs that were going through something similar and it really helped me. I hope this can help anyone experiencing anything similar with Ulcerative Colitis or other health struggles.

God Bless,

Laura