Friday, November 29, 2013

Giving Thanks

**Ok before I start, I said I would give an update on how I am doing.  Sorry kids, I wish I had better news for you.  Please don't feel bad- it is what it is.  We are doing the best we can and to be honest we really have almost come to a place of acceptance.  I am not as well I would like to be.  The pain has increased, my body just doesn't not seem to want to function very well most days, my movements are weak and jerky, and I get nervous with some of the symptoms I am displaying.  My neurologist and my primary doctor are working aggressively together and have decided to do every single test under the sun.  They do not want to miss a single thing that could possibly be going on.  I am having cat scans, MRIs, constant blood work ups, and things I cannot even pronounce.  I go in every couple of weeks just to monitor my symptoms.  I am having a very painful test next week in which a bunch of my nerves must first be shocked and then have needles stuck in them...I can't remember what this will reveal, but if it shows anything, I will then have a nerve biopsy done.  My neurologist is a very dedicated doctor who is the kind of man who wants to find the answer to the problem- so much so that he had poor bedside manner at first because he is only focused on the issue not the patient.  But he has gotten to know me over the past couple of months and he genuinely likes me now- which has only made things harder.  The look of sadness in my doctors' eyes makes me sad- they truly feel sorry that they have not been able to help me.  I try and hug them when I leave and tell them it's ok- that no matter what happens I will be ok.  And it's true- I have Jesus.  I really am ok.

So we are going through all of these tests, and if NOTHING shows up on any of them, the final conclusion they are coming to is that this is some form of progressive small fiber polyneuropothy that was caused by the Stevens-Johnson Syndrome.  Thats fancy talk for the SJS causing my nervous system to self destruct lol.  It is highly unpredictable as to what it will do, how it will progress and no, they cannot fix it- their main goal is to assist me in dealing with it's effects on my body- the spams, the weakness, the pain, the eventual loss of motor skills, etc.  The pain has become too much for the medication to handle, and I have been moved up to a medication called Fentanyl- it's a patch I wear on my body and it releases a very strong medication right through my skin and lasts for 3 days.  It's much stronger than the pills but better than taking pills every few hours.  Now I just use pills for breakthrough pain.  I am still on another type of medication to help with some of my nerve issues, but I am hoping if we find the right dose of this pain medication maybe it will end up helping at least with the pain side of things.  It is slightly embarrassing because it leaves marks all over my body when I have to switch locations...but really its a small price to pay in light of everything lol.**

I have become very active in documenting my illness in photographs.  On the left you can actually see the translucent medication patch on my arm.  On my chest and my shoulder blade you can see the marks (sorry for the bad lighting) that the patch leaves behind when I have to take it off to put a new one on.  

So thats the update!


Yesterday was Thanksgiving.  I do not have any family near me, so it is just me, Jeff and the kids.   We don't do anything during the day because every year our church does a big outreach where we cook a million Thanksgiving meals and deliver them all over the city to those who do not have any meals for Thanksgiving.  So this year Jeff took our oldest son and they were out until 2pm giving out meals while I was home hanging out with the little ones.  Then we just chilled out together the rest of the day and ate a nice traditional Thanksgiving meal for dinner that was so graciously given to us form the leftovers from the outreach by the church because I was unable to cook one myself.  It was a lovely, peaceful day with my family- a mix of giving and of receiving.

But later that night I was given the opportunity of which I am so grateful for.  Earlier in the week I was contacted by an old friend of mine who is a youth pastor of a church in Canada.  Tricia wrote to me and asked me if I was willing to appear live via FaceTime to her youth group and be interviewed.  She said they had recently been going through a series on the topic of Divine healing and that some of them had been struggling with what happens when God doesn't heal someone.  She asked me to talk about that side of the issue- about living life as someone who serves Jesus yet is very, very ill.

I cannot think of anything better for me to talk about.

If there is one thing I know, this is it.  I do not struggle with that question and I jumped at the chance to bring clarity to anyone who does.  Maybe that is not worded right- I cannot bring any clarity to the issue, because I am no theologian.  I know God, but I do not understand His ways.  But I can attest to His character- and all I wanted was the chance to do that.

So I decided to share the interview with you all this week.  Below are the questions that were asked of me via FaceTime and the responses that I gave.  I cannot thank Tricia enough for the chance to tell my story and for giving me a platform to share the faithfulness of Jesus with others.  Here is the actual interview along with my answers:


1. (Im skipping this question because it's about how i got my illness which I have talked about extensively in this blog)


2. What struggles has this brought to your life? (physically, emotionally, daily life issues, etc.)
Prepping for interview!!
We had to stop homeschooling the boys and put them in full day Christian school.  My husband had to quit his job to stay home and care for me and the kids bc I am no longer able to be out of bed for an entire day anymore.  The pain is too much for me to bear and just dealing with the pain often consumes my entire thoughts and I have to go lay down and deal with the pain.  I am also very weak and cannot walk unassisted at times.  I cannot take care of the kids or myself for a whole day alone.  I cannot go run errands and do normal chores.  This really messes with my emotions- I used to do EVERYTHING in my home.  I homeschooled my kids.  I cooked, cleaned, ran the errands, did the food shopping, took care of Jeff.  I was SO ACTIVE- even physically.  Every hear of the exercise program P90X? I completed that program.  I lifted weights.  I did it all…and now I do nothing. Everything in our lives has to be run through the lens of my illness.  If we have plans for the day or the week, we have to spread it out over the course of several days and then make sure there is plenty of rest time in between.  For example, if we have several errands to run, we cannot just do it all in one day- we have to do it over the course of a week making sure I am able to lay down in between and then know that I will need to crash by the end of the week.   If my friends want to go out to dinner and hang out one evening I usually will have to say no, because I have to be in bed no later than 7- any later than that and it takes quite a bit of medication to keep me functioning and to keep the pain tolerable.  I wanted to do my hair and make up for this interview, but because Jeff had to work for a few hours and I was home with the kids most of the day, I just was not able to move my body and have the strength to do my hair.  Then their are days where I can do everything right- I can rest, take my medication- and I will still be in pain and very weak.  My body is failing and there is little I can do about it.  I have also lost a lot of brain function from the medication I have to take to keep me functioning physically.  I had to write down all my answers to these questions because I am unable to recall basic thoughts mentally.  I cannot hold simple thoughts in my head any more.  I cannot remember the most basic things- I frequently drive by my own house when I am driving home.  I repeat questions multiple times not remembering I just asked them seconds before. I just never feel like myself anymore.  My husband has to explain the simplest phrases to me because I just don't understand basic things anymore…yet if I stop taking this medication my nerves will begin firing off and the body spasms will return and the pain will increase to more than what medicine can subdue…it's a rock and a hard place and there are choices I have to make daily and all the options are horrible.  It really is so hard emotionally to reconcile who I used to be versus who I am now.  I used to sing on the worship team, teach sunday school, homeschooled my kids, hung out with my friends- by nature I am someone who loves to be active.  That I used to be able to lift weights and now I need my husband to help me walk up the stairs.  That I used to cook a full healthy dinner from scratch and now I need help opening cans of processed junk to serve my family dinner.  I have to constantly guard my mind from thoughts of feeling like a complete failure as a wife, mother, and human being.  I have cried many, many nights over who I have become and feeling like a complete burden to Jeff.  Over the fact that my kids don't even need me anymore because now Jeff is their main caretaker.  It hurts very very much.


3. Has being sick changed your view on who God is?
My view of God totally changed when I got sick.  The amount of awe I have for God cannot be described.  I have an intimacy with God that I didn't have before- but I also have a respect and a deep sense of just awe that wasn't there before.  I knew God was worthy of worship…but now I feel it.


4. Have you doubted God's existence or God's ability?
Never.  How can you doubt the existence of a God whose presence you feel so strongly all the time?  I do not believe anybody when they say they don't believe in God- I think what they really mean is that they are angry with Him or that they have unanswered questions from Him, or have an issue with Him.  But no- I have never doubted His existence- He has been more real to me this past year than ever before.  As far as His ability, I don't even think that's the ever question.  I think many people believe God is able to heal- as do I.  I think the real question is have I ever doubted whether or not God ever WILL heal me.  Sure, God CAN heal me if He wants do- but does He want to?  Is He ever planning on actually doing it?  Those are the questions that people are really asking.  And I really don't know.  I am no theologian and the truth is I DONT CARE.  Maybe He will, maybe He won't  It doesn't effect a single thing about my life or about how I will continue to walk with Him.  If He doesn't heal me will that change anything?  No.  I don't serve Him because I believe one day He will heal me…I serve Him because he is My Lord and I love Him.  I don't wake up every day with that being the firth thing on my mind- yes, I wake up with pain being the first thing on my mind- but that draw me to prayer.  Not that I would be healed but that I would simply draw closer to needing Jesus.  That I would be graceful in how I handle my day, that I would still look for ways to serve Him, that I would still honor Him with my life.  It really does keep me needing the Lord every waking moment.

5. How should we pray for ourselves or other's who need a healing?
About to go live via FaceTime!
Try to picture how hard it must be for me to be at a church service when the topic of healing comes up- how every eye looks at me when the preacher makes the altar call for healing.  How every hand comes to pray for me every single time.  How to YOU it must be so awful and you imagine I must want healing every moment of every day.  Consider all I have said- yes, I want to be healed sometimes.  And if He wants to heal me He can at any moment do so.  But I live my every moment for Him and I do not walk around in a cloud obsessing over healing- I live my life.  So can you imagine how awkward it makes me feel when YOU obsess over my healing.  If you come up to someone with authority you better have a divine word from the Lord and the better get healed or you don't know the damage you may be doing to them emotionally and mentally.  A nice sincere prayer is fine- but to make is the constant focus is a tragedy.  Our pastor finally came to our house one day when things were really bad with my health and he asked me what I wanted to tell the congregation- and thank God he did that because while I was SO GRATEFUL for everything, I felt that the congregation was mourning for me and was unable to move forward because  was not being healed.  And so I told them- it's ok to praise the Lord and to keep moving on even though I continue to be sick.  It's ok to dance and laugh and pray and love even though I miss church and lot and am very ill.  We are ALL here- including me- to serve Jesus.  In health or in sickness our purpose does not change until we all meet in heaven we have this one goal.  So please do not get sidetracked with this issue of sickness and healing.  We no not know His ways.  We never will fully know all there is to understand about the Lord- that what makes us man, and him God.   Focus on the things that REALLY MATTER.

6. How do you pray for yourself?
My prayers have changed very little since getting sick.  Well, that's not true- it has given me more to pray about because I have more pitfalls to watch out for.  As someone who is in a lot of pain every day I have more things I need to guard against as far as someone who wants to live like Jesus.  I pray very much that I would not be a complainer.  That I would be a woman of character and integrity in all that I do.  That if I see someone in need I would not be so wrapped up in my own problems that I would not be able to extend my hand and heart to help them.  My prayers for the kind of person that I want to be have NOT changed since I got sick.  Once and a while I pray for my healing…but I confess it is simply not my main prayer.  I DO pray for it and I KNOW God can do it.  So I ask for it and then I move on.  My physical body only has an effects this earth- my character has the ability to effect eternity.  So I spend a lot more time praying for who I am as a person than I do about my body.

7. What has God taught you through this?
Oh, what a question to ask.  God has not taught me a single thing.  But I have learned many, many things.  God is who He is.  He never changes- His character, His faithfulness, who He is never changes...but what we discover about Him and what we uncover about Him is what we are constantly learning through our experiences.  What you choose to see and learn about that is up to you.  God is not sadistic- He is not up there playing games with us.  He does not move pieces around for His own pleasure.  This world is a fallen place full of sin and sickness and evil things because MAN IS FALLEN AND MAN CHOOSES THINGS APART FROM GOD.  We live in a world that suffers the many consequences of lives lived apart from God.  People get sick.  I got sick.  Jesus was Jesus all the years I was healthy and He is still Jesus all the years I have been sick.  Plain and simple.  But what I have learned over and over and over again is that He Is Faithful.  He is so incredibly faithful.  You have two choices when you go through something hard and traumatic- and the choice is solely yours- you can run to God, or you can run from God.  One of those choices brings you down a path of excuses, and blame, and bitterness.  The other brings you down a path of depth, and discovery, and the truest, deepest walk with the Lord that you will ever know.  I am blown away with how intimately I know my God.  People will say to me "I could not handle this the way you do it if happened to me."  Well, if you were to get as sick as me, you would have to make a choice- and if you chose Jesus then you too would have abundant grace upon you.  Because I am nothing special- NOTHING special.  I am as average as they get…but I love Jesus.  And when I chose to cling to Him in my hardest of hours, He met me.


Thank you Tricia.  Thank you for giving me a chance to tell your students how wonderful and how faithful God is ESPECIALLY in the midst of hard times.

Be blessed this week, and I look forward to seeing you all next Friday.



1 comment:

  1. Your perspective, helps me to change mine...thanks for being so honest Ashley. Love you.

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