"...life just isn't the way I always thought it would be."

 Do not judge a day as devoid of Joy just because it contains difficulties. Instead, concentrate on staying in communication with Me. Many of the problems that clamor for your attention will resolve themselves. Other matters you must deal with, but I will help you with them. If you make problem-solving secondary to the goal of living close to Me, you can find Joy even in your most difficult days.
-Sarah Young

I am writing in hope for some advice. I have been in and out of the hospital a lot over the last few years, and really racking up my time here this summer staying over 9 weeks for that deadly necrotizing fasciitis in July/August/September... basically my whole summer. For the most part, the girls have managed well enough at my parent's house during the week, some days being passed around to my sister or in-laws, and then our home with my husband on the weekends. They haven't complained too much and people have made a real effort with trying to get their mind off of stressful things (like their mommy being really sick in the hospital) and we would Skype and have an occasional visit if “operation sneak in toddlers” worked for Jon. But for some reason, this last visit (which has lasted about two weeks) has really gotten to them. They have developed major attachment issues and have developed major anxieties from me being gone for so long. My oldest, Lucy said to me in tears on the phone the other night: “Mommy, I used to think you loved me but now i just don't know. You say I can always believe u but I wake up and your gone. I just don't know who to believe anymore. I just don't know what to do." The last time I came home I put her to bed that night, stroked her soft beautiful face and said that she doesn't have to worry, that Mommy will be here when she wakes up in the morning to cuddle and kiss her, then she closed her eyes with a reassured smile on her face and drifted into sleep. During the night (like most of my episodes) I developed major problems and had to be rushed to the ER once again, and once again mysteriously abandoning my babies in the night (my parents would then come over for the night and then take them in the morning). Also, last time I was home (which was so briefly (2 days)) my little one Isla clung to my neck for dear life and sobbed and sobbed, uttering between tears, “Mommy Mommy! Don't go to hos-spal (hospital). Don't take Mommy away. No, Mommy NO!” I let her fall asleep in my arms, but yet again my body had other plans for me that night as I slipped quietly from her tight grip and slipped quickly away from her world that night, stealing her confidence and any last shred of hope that her mommy will be there for her when she needs her.
Life, yet again, had separated us, had separated the “3 musketeers buddies” that had been so calmly enjoying the simple things in life like silly indoor pick-nicks, stuffed-animal vet clinics, and craft time of gluing “treasures” (anything from a rock to a shiny button to to a scrap of silver foil or evan an old Cheerio they would find in the couch cushions (a great way to clean the house by the way) onto painted paper plates (which by the way, fellow moms, takes up hours (at least at our house) of fun including the “treasure hunting” as the first step.) And all of this life could be gone, poof, stolen in the night with another unexpected GI emergency, and a new life in the morning.
Lucy had put our crazy life so clearly in perspective when she told Jon one morning on her way to preschool: "life just isn't the way I always thought it would be." Being so saddened to hear this, I later brought up it up in casual conversation, and after Lucy repeated her broken expectations, innocent Isla responded trying to be part of the “big girl” conversation, saying: “yeah... just like snakes.” After a little shared smile between Lucy and I, Lucy rolled her eyes and said, “No Isla, like mommy being our friend and playing with us. And now I'm so sad because (then a 30 second burst of tears) I don't want mommy to go heaven first, without me."
There is just so much heart ache, between all of us. And I feel so lost, not knowing what to say or do, and usually in these situations I just hold my dear little ones tightly and rub their backs, but I'm not able to do that... I'm not able to do anything but sit in my hospital bed and pray for them. So here is where I welcome all advice. What do you say to a 2 and 4 year old who desperately need your time and affection (which you cannot give at the moment), what do you say to a child who begs for a promise of security that you will be home and stay home to be their mommy when you know in your heart you can't give that, having no idea what tomorrow, next week or even the rest of life will look like? I'm asking for help, for any wisdom or knowledge or experience with something like this. The last time I was home (last week with lasted a whopping 2 nights) the girls sobbed about how sad they were and begged me not to go to the hospital (or hos-pal as Isla would say) again. They wanted me to promise them that I would be there for them, that I wouldn't disappear anymore. But I was so lost for words... because the truth is I can't give that promise. So what do I say? What do I do to give them hope, reassurance, and sense of stability of my presence when I'm not sure myself?
Tuesday Jon drove me to my Dr's appointment, Isla came being determined not to let me leave her sight, and I thought it would be a good idea to show her that “the doctor” isn't that bad after all, that he won't always “take mommy away.” I thought it would be a positive experience to have her see the doctors “check” me and then to see me come home. My appointment was to follow up from a previous hospital stay for a bacterial infection in my small intestine that really knocked me out good (I was discharged just two days before at this point), but I started to feel the same symptoms again. In the office, I passed out due to severe dehydration which lead me to yet another hospital stay as they later found I still have the same infection. When I was waking up slowly from blacking out, I heard Isla's screams in the hall as Jon pulled her away and the rapid response team began to surround me. “No Mommy, NO! MOMMYYYYY!!!!!!” was the last I heard before I was whisked away to the ER and then to my hospital room. I fought the whole way there (the office was just a building away from the hospital) saying how I needed to go home, that I was fine... I was so determined to not to leave them again, but then after passing out again in the ER in an attempt to escape, I was quickly brought to my room and demoted to “yellow socks,” (which any hospital regular knows you are labeled a 'fall precaution' and loose a lot of personal ability privileges (like being able to pee by yourself :(, so annoying)). Anyway, so I am hear again, trying to do what is best for my children. I demanded that I go home but the Doctors explained that it would be against their advice and wishes so I would have to sign a paper, and if I want to get better for my kids then I first need to fight it here. So here I am, awake this whole night in physical discomfort but even more so in emotional agony. Mothers, Fathers, Christians, human beings.... please, do you have any advice? What do I say to my children? How do I speak the truth but give them reassurance?
Thanks for taking the time to read this. Sorry for my pathetic plea... it must be viewed with the knowledge in mind that I have basically not slept in 2 days, am drugged for the stomach pain, and therefor not held accountable to anything embarrassing I might say or present myself :)
Thank you,
And as always, prayer is always appreciated.
Prayer requests: - That God gives the girls his supernatural peace, understanding and security. - For healing of this infection and for the terminal intestinal problems with malabsorption and loss of fluids through constant diarrhea. - For strength for Jon in holding everything together under work stress. - And thank God for a real blessing as our dear friend Joy moves in with us temporarily to help with the kids, house, and supervise my safety as I recover from everything. - For answers with my reoccurring fainting, low blood sugar, strange liver problems with blood flow, and my hearing: I have recently been diagnosed as “mild-moderately deaf” due from a side-effect from one of my prolonged exposure to an antibiotic during treatment for the necrotizing fasciitis :( - And for a dear friend Lisa who is battling cancer right now with an adorable little girl of her own.
Thank you always,
Laura  
“Bold prayers honor God, and God honors bold prayers. God isn’t offended by your biggest dreams or boldest prayers. He is offended by anything less. If your prayers aren’t impossible to you, they are insulting to God. Why? Because they don’t require divine intervention.” ...from a lovely young mother struggling with her health, Lisa Graham Powe

...so this sums up the conclusion of nearly everything

 
PSALM 56...69

You number my wanderings;
Put my tears into Your bottle;
Are they not in Your book?
When I cry out to You,
Then my enemies will turn back;
This I know, because God is for me.
In God (I will praise His word),
In the Lord (I will praise His word),
In God I have put my trust;
I will not be afraid.
What can man do to me?

Whenever I am afraid,
I will trust in You.
In God (I will praise His word),
In God I have put my trust;
I will not fear.
What can flesh do to me?

Hear my cry, O God;
Attend to my prayer.
From the end of the earth I will cry to You,
When my heart is overwhelmed;
Lead me to the rock that is higher than I.

For You have been a shelter for me,
A strong tower from the enemy.

Vows made to You are binding upon me, O God;
I will render praises to You,
For You have delivered my soul from death.

Truly my soul silently waits for God;
From Him comes my salvation.

I will cry out to God Most High,
To God who performs all things for me.
He shall send from heaven and save me;
God shall send forth His mercy and His truth.

My soul, wait silently for God alone,
For my expectation is from Him.
He only is my rock and my salvation;
He is my defense;
I shall not be moved.
In God is my salvation and my glory;
The rock of my strength,
And my refuge, is in God.

Be merciful to me, O God, be merciful to me!
For my soul trusts in You;
And in the shadow of Your wings I will make my refuge,
Until these calamities have passed by.

Save me, O God!
For the waters have come up to my neck.
I sink in deep mire,
Where there is no standing;
I have come into deep waters,
Where the floods overflow me.
I am weary with my crying;
My throat is dry;
My eyes fail while I wait for my God.

But as for me, my prayer is to You,
O Lord, in the acceptable time;
O God, in the multitude of Your mercy,
Hear me in the truth of Your salvation.
Deliver me out of the mire,
And let me not sink;
Let me be delivered from those who hate me,
And out of the deep waters.
Let not the floodwater overflow me,
Nor let the deep swallow me up;
And let not the pit shut its mouth on me.

Hear me, O Lord, for Your lovingkindness is good;
Turn to me according to the multitude of Your tender mercies.
And do not hide Your face from Your servant,
For I am in trouble;
Hear me speedily.
Draw near to my soul, and redeem it;
Let Your salvation, O God, set me up on high.
I will praise the name of God with a song,
And will magnify Him with thanksgiving.
The humble shall see this and be glad;
And you who seek God, your hearts shall live.
For the Lord hears the poor,
And does not despise His prisoners.

Let heaven and earth praise Him,
The seas and everything that moves in them.
For God will save Zion
Let Your glory be above all the earth.

My heart is steadfast, O God, my heart is steadfast;
I will sing and give praise.
Awake, my glory!
Awake, lute and harp!
I will awaken the dawn.

I will praise You, O Lord, among the peoples;
I will sing to You among the nations.
For Your mercy reaches unto the heavens,
And Your truth unto the clouds.

Be exalted, O God, above the heavens;
Let Your glory be above all the earth.

I will wait for You, O You his Strength;
For God is my defense.
My God of mercy shall come to meet me.

But I will sing of Your power;
Yes, I will sing aloud of Your mercy in the morning;
For You have been my defense
And refuge in the day of my trouble.
To You, O my Strength, I will sing praises;
For God is my defense,
My God of mercy.

O God, You are my God;
Early will I seek You;
My soul thirsts for You;
My flesh longs for You
In a dry and thirsty land
Where there is no water.
So I have looked for You in the sanctuary,
To see Your power and Your glory.

Because Your lovingkindness is better than life,
My lips shall praise You.
Thus I will bless You while I live;
I will lift up my hands in Your name.
My soul shall be satisfied as with marrow and fatness,
And my mouth shall praise You with joyful lips.

When I remember You on my bed,
I meditate on You in the night watches.
Because You have been my help,
Therefore in the shadow of Your wings I will rejoice.
My soul follows close behind You;
Your right hand upholds me.

quick update

 This is a quick update. As you probably know, I've been in the hospital for a few weeks. After having problems with my PICC line, I went to the hospital due to a fever and throbbing/aching arm. A couple days later, after an MRI of my arm, I was rushed into emergency surgery. I woke up in the ICU to be told I had Necrotizing Fasciitis, which is a life threatening condition where the layer of tissue under my skin was dead or dying from my forearm to my chest area and had to be removed. This was caused by a fast moving flesh eating bacterial infection. They had to remove about half of the tissue in my arm/armpit/breast, but were ultimately able to save my arm (and life) for which I am thankful. I was told that I would be due for at least half a dozen or more surgeries, but thankfully, within only three surgeries the doctors were able to remove all of the infection and close up my arm. They were surprised by how abnormally and extraordinarily fast the healing in my arm was. I know that I was blessed with so many people who prayed for me and for my healing during this time. I want to truly thank everyone for your prayers, support, and encouragement during this very difficult time for our family.

PS: My surgeon just came in beaming to see me doing so well, and then proceeded to confess how worried he was and just how lucky (saying lucky three times) I am to be sitting here today, with a mortality rate of 30-50% with this disease and much higher with cases like mine that spread past the arm. I think of poor Jon who anxiously awaited in the waiting room during my first surgery...to have the doctor come out with heavy eyes, sit down and shake his head slowly to say “...we just don't know.”

I truly praise God for all his blessings, big and small, throughout this terrifying ordeal.

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.