PostHeaderIcon 1. Events leading up to the ER

So in December of 2008 We moved back to Utah.  I work for a software company whose main focus is in Systems Integration, like Symantec’s Altiris, or Novell’s Zen Works.  When we moved there we spent the initial time living in my in-laws basement. LANDesk is a great company to work for, but in the beginning I started out as a contractor who had to handle my own benefits.  As a person with Crohn’s  I dealt with at least 5 major Health insurance carriers who would not cover me because of my “Pre-existing condition” .  I’m not a huge fan of the new Healthcare, but I do applaud the move to keep insurance companies from denying right to coverage based on a pre-existing condition.  ANY-HOO…

INSURANCE:

So short of it was I couldn’t get normal health insurance, mind you I could afford it, but no one would accept me.  I didn’t want my insurance coverage to lapse, otherwise I wouldn’t be covered for my Crohn’s on a group policy down the road.  So I ended up having to deal with a sub-insurance company.  I chose Selecthealth. They are one a few companies owned by larger insurance companies and they provide a specific purpose — They cover the uncoverable…. somewhat.  They have some limits such as…

  • They won’t cover medical expenses for pre-existing conditions
  • They only do terms of up to 6 months with a maximum of 2 terms every 24 months
  • If I come up with some condition during the first term, in the second term it is listed as a “Pre-existing condition”
  • All cost is payed up front.
  • Deductibles are high

So with those caveat’s they give you

  • Limited Health insurance
  • the ability to extend your insurance coverage until getting onto a group policy

So as much as I will always hate them, I’m glad they existed for me to keep my family covered.

HEALTH:

I thought that my health was all right but as I got into the first few months of 2009 I started to lose weight again.  I had to take sick days and spent them curled up in a ball, near a bathroom, never knowing if I would have a sudden onset of severe diarrhea or vomiting.  My stomach was distended and bloated.  And I just sucked it up cause, I’m a man (or something) and  I didn’t want to be a medically financial burden on my family.  At the same time, I was trying to plan an 8th Anniversary trip for Kaylene and I to Portland Oregon where I served my mission for the LDS Church.  I had no idea how I was going to do this with my health in such painful decline.

My Father, Father-in-law, and my brothers/in-law got me through this period.  I would be in severe pain and I had men around me who tried their best to represent god, and they blessed me.  They offered me blessings of health and support during my pain, and I felt my burden eased.  To be clear, I FELT my burden lifted, my pain was fleeting, and I was amazed to see the difference in my body after I received blessings from them.  Mind you I was still troubled, I was still worried.  I still felt pain, but never to the extent that I could not do my job, or that I had to go to the hospital, or worry as much about “costs”.  I am privileged to have been blessed by them and it gives me a knowledge and a testimony in the power of the priesthood used righteously.  It also taught me lessons in the power of faith in my family, love for them, and the trust that they would have in me.

I was able to go on my anniversary trip and enjoy the whole time with my wonderful spouse.  I cherish that time we had in Oregon.  Thanks to my family for watching Michael, Aiden, and Joseph.

FULL TIME:

In July of 2009 LANDesk was finally able to hire me on as a full time employee.  My Selecthealth term had just run out and they were able to get me on the group policy before wasting any more money – 😉 . It was a sigh of relief for Kaylene and I and I hadn’t felt any major pain since before Oregon.  I dove into work and family.  Kaylene and I continued our search for a house to call home and we went on a number of trips with our Real Estate Agent.  I know that Kaylene poured over hundreds of homes and toured many homes, and yet nothing ever seemed to stick.  In September My tummy started getting bloated again and was a little uncomfortable.  At this point, I should have gone and seen a doctor about my tummy now that I was insured.  Hind sight being 20-20 and all that…

A FEW DAYS BEFORE:

I woke up sick…  I really do think it was that simple.  I woke up and it was the middle of the night.  I just felt that swirl in my tummy.  I had been to the ER 2-3 weeks before and received a CAT scan.  The results of the scan were that my gut was intact, but there was some concern about getting me back into see a gastroenterologist.  I Called in sick and spent the next two days near a bathroom.  AGAIN, with the vomiting, diarrhea, cramping, and discomfort.  When ladies complain about cramping, I can understand what they mean (TMI FILTER NOT WORKING).  I spent those days either in the bathroom or laying down on the floor near the bathroom.  On the third day…. (sounds kinda biblical, heh) Kaylene took me in to see one of the doctors at our family practice.  He had looked over the scans and thought I should be on some pain medication and then see one of their Gastro doctors the following Tuesday.  This being a Friday, I wasn’t looking toward the weekend.

My wife knew that I was in trouble, but I just wanted to “deal with it”.  Kaylene had me taking some additional herbs with my medication, one of them being Cayenne.  Guess it’s good for the gut, but not for the taste buds.  I got home, laid down and continued the pained routine of the last few days.  Kaylene had an appointment with the Realtor to see some homes and went out with her.  Now for the the last three days she was asking what she could do or if I was ok, and I being a stupid bull headed man kept saying “Yes, hon, I’ll be ok.  I just have to get past this…”.  So she goes out and while she is out, I start throwing up again.  This time it comes up “Cayenne Pepper” brown.  It got to a point where I was thinking, “I didn’t have this much Cayenne pepper”.  I think it was then that I also realized it didn’t smell like Cayenne either.  (This is a huge feat now that I think of it since the Cayenne I had thrown up had stripped my nose and throat).  Kaylene got home,  and I wasn’t sure what was happening, she asked me again if I was ok and I said “I’m feeling better”.  Why did I say that, I don’t know, but I’ll admit that I WAS TOTALLY WRONG.  Bless my sweet wife she did the best she could and she and her mom were wise enough to realize that I was probably throwing up blood.  She put me in the car and she and Nathan (Brother-in-law)  raced me to the Hospital.

A FEW THINGS I’ve learned from this experience.

  1. Trust your wife’s instincts
  2. Don’t be a macho man – refer to #1
  3. Faith, Hope, and Love – and the greatest of these is love.
  4. I know the power of a priesthood blessing.
  5. Don’t fear the Doctor(AKA Reaper)
  6. Be humble enough to ask for help – again with the #1

Kaylene,  even though everyone is going to read this, I want you to know that I am sorry.  I’m sorry I didn’t listen to you.  I’m sorry I put you through all of this.  I’m sorry I didn’t listen to your judgement.  I’m sorry you had to be that close to losing me.  I love you.  I am so glad YOU were there when I woke up.  I’m humbled that you forgive me my faults.  I love you, my sweetheart.

PostHeaderIcon Crohn’s and Me!

WARNING:  Since my experience in the hospital and going along with my Crohns, I no longer have a TMI (Too Much Information) filter when it comes to bodily functions/malfunctions, Hospitals, and other possibly gross things.  I don’t mean to offend anyone if what I say sounds gross – SORRY!!

In 2004 I started having some health problems, including bleeding from places I wasn’t used to bleeding, pooping a TON, and losing weight without even trying.  Since then I’ve heard the question “What diet plan are you on” like 50 million times…..  Trust me, you don’t want this one.   After a fun process, which would include a Barium X-Ray (YUCK), and the first of three colonoscopies before I was 30, was diagnosed with Crohns disease.

My wife has been my help and support through all of this.  The days where I couldn’t even get out of bed, or the ones where I spent most of it on the toilet.  The days where I would drag myself to work white as ash, and just muddle through.  All the while worrying about what would be next.  My life is a unknown factor because of my Crohn’s, my future is unknown, my ability to finish my work on a daily basis, whether my kids will have crohn’s is a big unknown for me too….  A lot of things to be worried about with all the other things.

My wife, family and friends have been there for me, supporting me, supporting Kaylene when I was down and out, offering help, suggestions, prayers, and blessings.  Thanks to all of you who helped, supported, even those of you who just sat there and listened to me.

Things You might not know about Crohn’s disease:

Where does Crohn’s affect you?

Crohn’s disease is an -ONGOING- disorder that causes inflammation in the digestive tract, but as one of my Baylor friends, and my first fellow Crohn’s-ian told me, this affects you from “Gum to bum”.  It more commonly affects the section where your Small and Large Intestines connect, called the ileum.

What can you do about it?

There are many ways to treat Crohns with methods ranging from Western to Eastern Medicines.  My approach has been mainly Dietary with monitoring,  and some Medications.  Options include, but are not limited to…

  • Medicine’s
    • Pentasa (5-ASA for reducing the recurrence of inflamation) – I started on this 16 pills a day – NO FUN!
    • Imuran (Immuno-suppressant to maintain an overactive system) – Currently at 150mg a day  🙂
    • Prednizone (Steroid for Inflammation) – Not my recommendation unless you are a sever sufferer.
    • There are others such as Remicade, but I have no experience with them
  • Diet
  • Acupuncture
  • If you know of others, please feel free to post in the comments.

Possible Genetic Factor:

About 20 percent of people with Crohn’s disease have a blood relative with some form of inflammatory bowel disease.  In my case I know I have an Aunt (Love you Penny) and a cousin with Crohn’s, and my little brother deals with Ulcers (Shout out to Dallin).

Common symptoms of Crohn’s disease:

  • Abdominal pain
  • Diarrhea
  • Rectal bleeding
  • Weight loss
  • Intestinal ulcers
  • Arthritis
  • Skin problems
  • Fever

Common Misspellings:

Chron’s Disease, Croan’s Disease, or Crone’s Disease (No, this is not an old ladies disease)…..


PostHeaderIcon Where should I start?

Hey Folks,
I’ve had a rough couple of days trying to remember, all that happened, that I could remember.  There is so much that I know is there and I cannot write it all at once, but I cannot decide where to start.  Some would say start at the beginning, and while my list is chronological, I’m writing for myself, but also for the people who were there along side me the whole time.  Please, please , please leave a comment and let me know which (Up to 3) posts you think you would enjoy the most.  Please keep it at a 3 maximum.  Knowing what people might want to hear makes it easier to start.
  1. Events leading up to the ER
  2. Waking up after the first surgery
  3. Brief Explanation – Who’s Tracee?
  4. What I remember during the first time I was OUT.
  5. Waking up a 2nd time
  6. TRIPPING OUT!!! – Coming off of Propofol
  7. Getting through ICU
  8. Friends and Family
  9. Leaving the ICU
  10. Going home – Kinda
  11. Recovery – Physical
  12. Recovery – Mental
  13. How Insignificant and Precious
  14. What I remember the 2nd time on “Holiday”
  15. My sweetheart.
Thanks Everyone….
Kevin

PostHeaderIcon Songs that remind me of this last year – Post Surgery

From Sonata No.2 in A Minor, for Violin Solo – Bach

This is my favorite piece of music, EVER. and the fact that it is Classical, much less Bach, is pretty amazing (I’m not so much a classical fan, though I am a HUGE Piano Fan). This song always calms me and I can listen to it on repeat for hours on end. It is one place where I can find peace and inner harmony. This was how I felt during my moments in the “After time”.

Vanilla Twilight – Owl City

I had time to dream during my medical coma, and the thing I will always remember about that time is that the only one I wanted to be with was my love, Kaylene. I remember us being different places such as Heber Valley Railroad, Blackfoot Idaho, Oregon, and other areas that are peaceful areas in my past. She is the only one I wanted to be with; She still is. This life and the after wouldn’t be the same without her.

“I’ll watch the night turn light-blue
But it’s not the same without you
Because it takes two to whisper quietly
The silence isn’t so bad
‘Til I look at my hands and feel sad
‘Cause the spaces between my fingers
Are right where yours fit perfectly”

Waiting for My Real life to begin – Colin Hay

This was me waking up and spending my first nights in the ICU – Nothing to do but lay there, and feel helpless and needing more. More humanity, more purpose. I still feel more broken than normal. I know that Kaylene has heard me say before “I feel SO old”. Some people laugh when I say that seeing as how I’m only 31 now. I can understand the humor in my statement, but for a long time I’ve felt the parts in my machinery that creak and rub me raw. Like my skin fits too tightly and my mind doesn’t know what to do with itself. I’m waiting to feel the magic of youth, and that my opportunity hasn’t left me behind. It’s a hard thing to hope, when your physical, spiritual, and emotional joints are squeaky, rusty, and coming unhinged. I love this song cause it is a reminder of believing the fantastical, and that I still have to go out and do some work to make my dreams happen.

“When I awoke today, suddenly nothing happened
But in my dreams, I slew the dragon
And down this beaten path, and up this cobbled lane
I’m walking in my old footsteps, once again”

Fire and Rain – James Taylor

Kaylene will tell you that I LOVE to sing. I’m not that good, especially when I can’t belt it out, and even then…. This was the first song I felt I could try singing after everything happened. As well as being a James Taylor fan, I felt the pain of losing that important unameable part of me, and the triumph of being able to squeak the words out gave me such hope. The song still makes me cry if I try to sing it. This song is also for the people who “showed up” for me, for Kaylene, for our family. Thank you. Thanks to Jared and Shaleen for keeping Kaylene sane. Thanks to LANDesk and my friends there for their kind words, support, and love. Thank you to FAMILY! Thanks to all my friends and Kaylene’s friends who gave us their thoughts and prayers.

“Oh, I’ve seen fire and I’ve seen rain
I’ve seen sunny days that I thought would never end
I’ve seen lonely times when I could not find a friend”

Something in the Way She moves – James Taylor

This is to My sweetheart who stuck right next to me, even when life was crashing around us. I know it was hard for you too, and I was so happy to have you there when I woke up. We’re coming up on 10 years!! I love you. For myself, I’m sorry that I cannot be everything I want to be for you.

“Every now and then the things I lean on lose their meaning
And I find myself careening
Into places where I should not let me go.
She has the power to go where no one else can find me
And to silently remind me
Of the happiness and the good times that I know”

Breathe – Aalok Mehta

This song personifies my need to become real again after my recovery and starting back into real life and work. Aalok Mehta is one of my favorite musicians. The song reminds me of how hard it is remember to be alive and realize the beauty of those around you. To be able to breath a sigh of relief, a breath of normalcy. I think of how many times that I felt I was drowning and the people who pulled me up and helped me on my way again.

“The life you bring into my domain
It leaves me with a smile of anticipation
I don’t know if the courage inside can radiate
Without the changes that seasons dream
And I keep on record all of my fears
However transient life can be your dancin’ babe it bleeds into me”

PostHeaderIcon Preface –

I’ll keep it simple.  I’ll try to explain more in the other post’s i’ll be putting up.

Preface: On October 16th, 2009, I ended up in the emergency room after three days of continual nausea, diarrhea, and pain.  My large intestine had ruptured a few days before and I was suffering from internal poisoning and sepsis.  During my first operation my heart stopped and I lost responsiveness.

In simple terms, I died.  There are a lot of ways to put it but that seems simplest.  I just wanted to share my experience with you, what I learned, and my thoughts on why I still don’t have any good answers for all those BIG questions….

You may see some earlier posts referring to an “After Time”  When I lost consciousness and before they put me on Propofol, I ended up in a place that is a tough to explain.  It was a place of peace, and contentedness.  I experienced things there that have expanded my understanding of Myself, my family, and to a slight scale, my place in the universe.  I’ll talk more on that later, please just understand that my “after time” has changed me indelibly.

I’ll be adding more posts after this stepping through everything and  I’ll give more detail in additional posts.  Thanks to all who stayed next to me and Kaylene during these hard times, both near us and in our hearts and prayers.

Love,

Kevin Steele

Death is not extinguishing the light; it is only putting out the lamp because the dawn has come.

Rabindranath Tagore

PostHeaderIcon One Word

Type only ONE word answers

It’s harder than you think!! Here is what you are supposed to do…and please don’t spoil the fun…copy and paste into your own note, type in your answers and have fun.

Your hair………………….………………..Blondish-Brown
Where is your cell phone………………Pocket
Your father………………..………………Whistling
Your favorite thing………………………Knowledge
Your dream last night……………………..Nothing
Your favorite drink………………………..Pepsi
Your dream/goal…………….…………….balance
The room you are in……………………….Cubicle
Your fear………………….………………….failure
Where do you want to be in 6 years………happy
Muffins……………….……………………Blueberry
One of your wish list items………………..debt-free
Where you grew up……………………….Saudi
The last thing you did…………………..…blogging
What are you wearing……………….……T-shirt-and-Jeans
Your TV……………………………………Powermac G5
Your pets………………….………………none
Your computer…………………………….Lenovo-T42
Your life………………….………………..busy
Your mood………………….……………..anxious
Missing someone……………….………….kaylene
Your car…………………..……………….cavalier
Favorite store…………………………….Amazon.com
Your summer………………..…………….Cyprus
Your favorite color………………………..Blue
When is the last time you laughed………..Today
Last time you cried……………………….Dallin
Three people who email me………………Kaylene, clients, co-workers
Three of my favorite foods……………….steak, asparagus, Stroganoff
Three places I would rather be right now…Home, Oregon, Aiken
Three people I think will respond…………family

Polls

Where do I start? - Vote for 3

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