October 05, 2008

A bit about my story

I had just turned 16.  I passed my driving test and was on my way to driving around town in my red cabriole with black and white cow cover seats.  Excited about life just as any other 16 year old would be.  It was March, 1993. For my brothers birthday, my family decided to do some spring skiing up in Tahoe, beautiful that day I remember, warm and the sun was hot!  I remember on our long drive home, I started not feeling well. I felt like I was coming down with the flu. I felt achy and had a low grade fever and just wanted to sleep.  And that was the beginning of my journey.  Several months went by of me not feeling well.  I would attend school for a few days and then be out for a few, I’d be at the doctors, back and forth, once a week, then a few times a week until it turned into every day.  I can remember showing up at the doctors office and I was too weak to walk so they wheeled me up in a wheelchair.  They finally admitted me to the hospital, where they ran a whole band of tests and I was released 4 days later with no diagnosis but rather, “take her home and make her comfortable, she’s probably not going to make it.”  I headed back to my doctors office the following day to go over some lab work.  The office was small…white…sterile. 

I remember laying on the white tissue covered table crying quietly and asking the doctor if I was going to die.  His response was, “I don’t know.”

The doctor said, “you have Systemic Lupus Erythemetosis and you are the first patient I’ve ever diagnosised with it.”  I remember laying on the white tissue covered table crying quietly and asking the doctor if I was going to die.  His response was, “I don’t know.”  A lot to take in at 16.  That year I had to withdrawl from school and finished up my sophmore year being homeschooled by different tutors so I wouldn’t fall behind.  My prognosis, if I recovered I would most likely be wheelchair bound by age 20 and a good chance of kidney dialysis as well.  I was angry at God.  I can remember asking Him over and over, “Why me?”  I turned from Him, wanted nothing to do with a God that would allow this to His daughter.

Several years passed with no major flares.  In 1997 I re-dedicated my life to Christ.  I was learning to live for Him, giving up my old lifestyle and putting on my new life in Him. 

In 1998, I was in my 4th year at Cal Poly, San Luis Obispo, and approaching my 22nd birthday.  I had gone to Hawaii in December and had not been feeling well on our trip.  When we returned in early January I had some lab work done that showed the disease was attacking my plateletes.  By mid January, I was in a full blown flare, fever of 105 and uncontrollable vomitting.  I was admitted to a hospital in Santa Maria for 8 days where they treated me with pulse therapy, which is 1000 mg of prednisone, 3 times a day. After day 2 I was a vegetable and to this day do not remember my hospital stay days 3-6.  This flare had a far greater impact on my walk with God.  I was not angry with Him, I was at peace.  I was surrounded by incredible family and friends, my college group held nights of prayer for me, my room was covered in His word. I remember early one morning I woke up and there at the foot of my bed was a stranger, kneeling and praying. To this day I do not know anything about this man other than the Lord had simply sent him that day to pray for me.  That day I told my family I was done fighting and that I was at peace to go and be with Jesus. It was a very surreal feeling, being at peace like I was.  Little did I know that night would be a part of my life for the rest of my life.  Jesus spoke to me, showed up in my room with a vision I can remember so vividly to this day.

That day I told my family I was done fighting and that I was at peace to go and be with Jesus.

And His very words where, “This disease will not take your life.”  I remember talking with Him and the best part was that He was so funny, my friend, comforting and yet full of authority.  I was so humbled that He would choose to speak so clearly to me in such a time as this.  The next morning I woke up, my counts had come up, I had energy.  No one could explain the drastic turn around. My family had left that evening with my words, “I’m done, I am ok to go” and came back to find the old Danika coming back.  God was good.

More years passed without any major flares. I remained on a low dose of immunosuppressants, prednisone.  I got married to a wonderful guy who loves Jesus and plays guitar (two of the many things I asked God for in a husband!). After being married a few years we decided we wanted to start a family. The doctors gave me the green light since I hadn’t had any kidney involvement.  I would be considered high risk and would require daily injections in my stomach due to a clotting factor you can have with lupus and pregnancy. Both seemed a small price to pay for having a baby.  A year and a half went by.  No baby.  We cried out daily to God, pleading with Him for a child. 

“Be still and know that I am God.” And immediately following He said, “now quit your job…”

One day I remember laying on my bed spending time with God in silence, waiting on Him to speak to me.  And He did, again…very load and clear. Apparently this is God’s way of communicating big things to me.  He gave me the verse, “Be still and know that I am God.” And immediately following He said, “now quit your job for two months.”  I argued with Him. I had worked so hard at building up my clientel, I was a full time hairdresser at the time.  I loved what I did and felt very gifted in it.  I finally shared this with my husband who told me to go immediately and tell my boss I was quitting.  So I did, but of course, I went and told her I needed to cut back my days.  I returned home and shared that with my husband who then said to me, “Is that what God told you to do? Now go back and quit.”  So I did. She told me I could have two months off and she’d save my station if I were to come back.  Two months went by and the morning before I was to return to work, I found out I was pregnant.  We had a healthy baby boy 4 years ago.  God was faithful.

I’m now 31 and have been living with Lupus for almost 16 years.  I am currently in the middle of my 3rd flare.  This flare has been very different than the past two.  During my pregnancy, some of my liver counts on my lab work started to rise.  This can happen during a pregnancy, lupus or not.  No one seemed concerned.  But after my son was born, the counts slowly continued to rise.  I was sent to a liver specialist who ran a few labs and did an ultrasound and didnt’ seem alarmed, just decided to keep an eye on it.  This past August, the counts were getting too high so they did a liver biopsy and I was diagnosed with Autoimmune Liver Disease Type 1.  The damage my liver has is quite significant and the doctors felt aggressive treatment was necessary.  They immediately started me on high doses of immunosuppresants and a drug used for liver transplant patients to help stop the attack on the organ.  I am currently undergoing this treatment as well as using Chinese medicine along side it to add in the recovery of my liver. 

Throughout my 16 years of having this disease, I have tried all sorts of different alternative treatments, some helping and others not so much.  I do believe that diet and lifestyle plays a part in controlling the disease but to what extent is my role, I’m in the process of sorting out with God.  I have spend some much of my life on a mission to get rid of the disease that the Lord has allowed me to have.  I’m just now facing the diagnosis in the face and learning to grieve it.  There will be freedom there.  As much as I don’t like having this illness much good has come of it. I have seen my sister come to Christ as she was “watching” during my flare in college. And then through my sister, my brother was saved!  The Lord has protected me from any side efffects of these awful drugs.  I have had minimal flares for the seriousness of the disease.  He has allowed me to walk through it, He hasn’t delivered me from it but He’s protected me in it. 

...this flare has more to do with God healing my heart and calling me to Himself…

This part of the website will eventually be used for more information regarding the facts and treatments of my disease and others that I find interesting to share on.  But now you know where I come from when I share on the topics on this site.  I will write more about this current flare as I come out of it but I do know that this flare has more to do with God healing my heart and calling me to Himself, rather than my physical healing.  God is patient.

10 Comments So Far...

January 06, 2009 Amy

wow Danika, I thought I knew your story, but there were many details that I didn’t know.  Thank you for sharing with me. 

I will continue to pray over you, and all the things God is teaching you through your illness.

Please know that I do consider you a dear friend even though we don’t see each other very much (our introverted selves!).  And I am here for you in whatever capacity you need.  A friend to talk to, an errand runner, a kid-watcher, a dinner-maker, you name it.

PS - I love the new website!

January 06, 2009 Elizabeth Saukkola

Danika… I am so thankful for a glimpse into your heart and your process with God.  Thank you for sharing these vulnerable details.  Although my struggles are so different, it encourages me to be honest with God, to listen to him, and to trust him.

January 07, 2009 Andrea Vomund

Wow, Danika, I had no idea any of this was going on.  I guess you don’t find this out in passing at CPP, smile.  You seem like such a happy and positive person and know these qualities will help you fight anything.  I will keep you in my prayers!

January 11, 2009 Annie

  that was a walk down memory lane, I am really glad you took time to write it all out, it will remind us where God has brought you and how faithful He has been, not only to you, but to our whole family. I am so grateful to walk this life beside you as my sister and my best friend, thank you for sharing so candidly. It blesses me, loves to you simon- Annie

January 15, 2009 Suzy

Danika, I got your website through a friend and am so glad I did.  This is so encouraging to me.  I’ve had my own struggles today that have had me in tears all day and as I stop for a bit tonight to read your story, I immediately feel God’s peace.  My favorite thing is “this disease is NOT going to take your life”.  Wow!  A personal promise from our King!  I got a similar promise from Him that my son was going to live (born at 1 1/2 pounds) and I held onto that promise everyday, no matter what the doctors said.  Sometimes I get a little frustrated at why God hasn’t healed all my (now 1 year) son’s little side effects yet, but then I’ll see that his story has brought someone else into God’s kingdom, just as your website is doing.  You are an amazing vessel.  Thank you for sharing!

January 16, 2009 Danika

@ Amy - Thanks so much for your sweet comment.  Allowing the Lord to use what He’s allowed is bringing me joy, and that is sooo of Him and what an awesome God, that He DOES take what we see as so ugly and bad and make it something good and for His glory.  Thanks for being such a real friend.

@ Annie - Hey best friend and sister, thanks for your encouragement!  Thanks for walking with me through this journey, I know I couldn’t be doing it without you, the Lord knew my “call” required you in my life!

January 16, 2009 Danika

Suzy, thank you so much for your comment.  I am so humbled that the Lord would use my story to minister, and I praise Him that He is doing so!  I haven’t stopped thinking and praying for you since I read your post.  I know our circumstances may be different, but I realize most people still experience the same root pain, and simply is realizing that the Lord has allowed something in your life that you do not necessarily want or chose, that your life just isn’t playing out how you desired, and in that, I can empathize and relate. I will pray for your son. My son was born 5 weeks early and had some issues with his eyes as a result and we’ve already had one surgery with him, so I know and understand the pain that comes when a child is sick or in pain.  I love your perspective, that God IS writing your sons testimony right now, this is all part of it.  I know we want to intervene and change it at times, but we have to lay our children and ourselves at the alter in order for the Lord to pick them/us up and begin His work.  I pray the Lord uses His story to bring Him glory!

January 29, 2009 seoelite

Thank you. I read herelots of valuable sentences. Greetings from Poland.

May 21, 2009 jurekpompka

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July 15, 2011 Cindy

How amazing it is that you understand that our monetary light afflictions are much more about drawing us to Him rather than making us comfortable.

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