Friday, November 30, 2012

In The Flesh

Those of you who know me in real life know that I am not particularly a shy person.  I am by no means flamboyant, but I don’t mind real conversations.  My illness is another matter, though.  I have been very open about my medical condition, but I always try and keep it brief and positive...I mean let’s face it, nobody really wants to hear constant sob stories, and neither do I.  I am by nature a fighter- giving up is not in me to do.  But some things are just bigger than me.  I almost posted this once before, but it was just too personal and it has taken me time to work up to this.  In fact, I don’t think I am ready for for it now...but I may never be.

So I have decided I am going to share my story with you anyway.

Many of you know the story, but you may not know “my side” of it.  It all started after I gave birth to my third child, Natalie.  She was my first girl and she is absolutely perfect and is such a blessing to us.  I was breastfeeding her and less than 2 weeks after she was born I got mastitis, which is a relatively common breastfeeding infection.  The only difference was, I did not get it in the conventional way.  There are several ways you can treat this infection at home, and if it doesn’t go away you can take antibiotics- but I never had that chance.  I had 4 hours from the very first symptom of being sick till I was being rushed to the hospital.  It all happened very fast- the sudden fever, the chills, the shaking, losing coherency.  I was admitted to the hospital and spent 3 days there.  It took some time before they found a medication that worked and I was kept there an additional day so they could make sure the infection did not get into my bloodstream.  But my blood was clear and they found an antibiotic that started working, so I was discharged and continued taking the medication at home.

Ten days later my nightmare began.

I will skip over the horrible specifics, but I ended up in the office of an infectious disease specialist and was told I had gotten Stevens-Johnson Syndrome from the antibiotic.  My skin was burning, my eyes were burning, and I had to have continual monitoring to make sure my internal organs were not shutting down.  I had headaches every day, my body hurt, my eyes hurt, and I was bedridden many days.  It took 6 months for me to recover to what my new normal would be.  After seeing an eye doctor for a year, it is confirmed that my eye damage is permanent- I used to wear contacts every day and now my eyes cannot support them for more than a few hours.  I am sensitive to certain lighting and often my eyes just hurt.  I get raging headaches.  My body is often tired and achy.  Some days I am in constant pain.  Every couple of months I have a flare up and I just can’t function and am bedridden.  

It has been almost 4 years and nothing has helped.  I have tried dietary changes, exercise, massage therapy, hydrotherapy, aromatherapy, muscle relaxers, acupuncture, etc., etc.  To tell someone who is by nature a fighter that it is out of their hands is excruciating.  It is almost unbearable.   

I still have not come to terms with it.  I try and be positive and I try and go about my life and only deal with it when it comes up, but the reality is I am not OK.  When I have a “flare up” and need to go to bed, Jeff has to take off of work to run the house and take care of the kids.  I cannot even articulate how that makes me feel.  To have to be in bed and not care for my kids.  To know the effect is has on our finances.  To feel the stress on Jeff’s shoulders with having to take care of home, kids, and a sick wife.  And to know that I am the cause of this.  

As if that is not enough, things have taken a turn for the worse the past 3 months.  What used to be a predictable occurrence every couple of months has become a daily condition.  I don’t know what happened or why this is happening, but my condition has worsened and for the past few months I am in pain every single day.  I am exhausted.  I try and bear the pain for as long as I can, but eventually I have to take something to deal with it.  The exception is when Jeff works late- I I won't take medication when I am alone with the kids.  I work very hard to put the pain and fatigue on the back burner until the kids are in bed and I can just lay down.

A couple weeks ago I thought I was getting better finally.  For about a week I started to feel better, and just when my mood was lifting and I was getting excited, it went right back down.  My doctor wants to see me again to start a grueling round of going to specialists.  A part of me wants to do this in hopes that someone, somewhere will have something that helps.  But the other part of me doesn’t want to take all that time and energy on something that may have little chance of success.

I feel like I have an understanding of Paul’s “thorn in the flesh.”  I have something in my life that is a hinderance and there is nothing I can do about it.  No matter how hard I try I am at the mercy of my condition.  No amount of work, positive thinking, or sheer will is changing this.  I wish I could say that I am surrendering this to God and am trying to learn the lesson He has for me.  I’m just not there yet.  I spend much of my time fighting off depression and negative thoughts.  I blame myself for all the hardships it brings to my family.  I hate being weak and sickly.

I just didn’t think the battle would be like this.  There are a whole bunch of scenarios I had in my mind when I thought of serving God, but this was not one of them.  All of the other difficulties we are facing right now at least have some eternal bearing- I know my character is being built and I know a testimony is in the making. But this?  I just don’t see anything spiritual in this, which makes living through it even worse.  

Please don’t feel sorry for me.  Seriously.  Pray for me, but don’t feel sorry for me.  Pity is right up there with weakness, and I will have none of that.  God is not flippant, and this did not catch Him off guard.  I am not at the place where I have given this into His hands, but I need to get there.  Whether or not I see a reason for this does not change that He is sovereign and I need to find a way to serve Him and trust Him WITH my illness.  He was worthy before, and He is worthy now.

This truly is a test.  I said I would walk the valleys if it meant following Him.  But I guess I only meant the valleys that I saw as worth it.  I think that is why I love the story of Joseph so much...every hardship in his life seemed to have no purpose- and yet he was faithful.  His faithfulness to the Lord in every step of his seemingly futile journey led to one of the greatest moment’s in Israel’s history.  His faithfulness in his own walk set the stage for God’s faithfulness to an entire nation.  You are sleeping if you think that you can exclude any area of your life and still be following the Lord whole-heartedly.  So don’t give up.  Don’t assume that what you are facing has no bearing in the spiritual realm.  God can reach down and heal me at any moment.  But until He does, it's up to me to continue to love Him and trust Him.  If I have any shred of integrity in my walk, this is where it gets put to the test.  

And I sure as heck don’t plan on giving up now.


  1. Ashley I am praying for you! And if you need ANYTHING please don't hesitate to ask! Thank you for sharing this!

  2. God is gracious, you know he won't give you more than you can bear. You are so strong and I wouldn't know when you need help the most. let me know i want to help you anyway i can.

  3. You absolutely amaze me (I know...all the glory goes to God). The fact that unless you actually tell us that you're going through this, no one would ever know, because you are always a light shining brightly. I could go on and on but one thing I just want to say is please, please, please...don't blame yourself (and of course, you know not to blame God). I am reminded of women who are abused or raped... it's a strange thing, but some tend to blame themselves...and we all know it's not the truth. I think (and I think you know) it's best to leave "blame" out of the whole equation. You know the answer... continue to love and trust God no matter what...I know, easier said than done.