Wednesday, February 27, 2013

Constant God, Part 2

(Note: If you haven't read Constant God, Part 1, I encourage you to do that first.  This will make a lot more sense if you do!)

I remember climbing the stairs to the balcony the first Sunday I attended church after my hospital stay.  The stairs were so steep.  I know I looked the part of a little old lady creeping up a step at a time.  I couldn't even stand to worship for the songs.  I think I cried at church every single week for a couple months.  And it wasn't because I was really that sad or angry.  I think I was just utterly physically and emotionally bankrupt,.  When you have absolutely nothing to offer to anyone, especially God, the clarity of God's truth and the depth of His love seem much clearer, much deeper...

Let me back up a bit.  I am a Christian.  I believe the Bible is true and I love Jesus.  If you don't believe that at all, or you're figuring out where you stand with the whole religion/God thing, that's cool.  I hope you take those kind of things seriously because they effect the decisions you make every day.  Just know this is the lens through which I see life and what drives my decisions. For me, life's everyday stuff brings me to decisions like these- Am I going to follow what the Bible says and do my best to line up my thoughts, actions, decisions according to what it says?  Am I going to put God first and truly seek what God's will is? Am I going to trust that God has a plan for my life and knows it much better than I do?  Or am I going to put myself first and do what I want instead?

So when you find yourself with a chronic disease that really doesn't have a known cause or a cure (although lots of effective treatments and a good chance for long term "remission") there's going to be some "stuff," if you will, that's going to hit the proverbial fan.  Most of it is emotional and spiritual.  When I started getting better instead of worse, I honestly thought life would return to normal before-sickness-type-life.  I was so overjoyed just to be able to do regular things again:  go to work, take care of my kids, laugh with my husband.  You never know how awesome regular things are until they are taken away.  Especially those things about my kids that annoyed me to no end suddenly became a source of thankfulness.  I felt so good that I cancelled a follow up appointment early in 2012 with my rhuematologist, convinced that I would be fine.  Slowly the number of pills I took each day decreased and my strength increased.  I gained back some weight so my clothes were no longer hanging from my body.

But eventually my eye problems came back slowly. My joints, especially my knees, were swollen and painful a lot of the time.  Auto-immune diseases are weird.  They are systematic so people who tend to have one type of primary problem often have problems in other parts of the body.  For me, it's been inflammation of the large intestine that has been fairly easy to control, but inflammation of certain joints and the irises in my eyes that haven't been so easy to control.  By May 2012, I was back at the eye doctor and the rheumatologist and trying to find some answers.  The first line of attack is controlling things by trying a type of sulfur drug (I take sulfasalazine) which decreases pain and inflammation without a lot of side effects.  Some people are on long term steroid use, but the side effects of that are huge and thankfully my case isn't severe enough to justify it.  (Look at how educated I've become!!) Anyway, the new meds were somewhat effective and I got through summer 2012, including resigning from my job in Vincennes and moving to Terre Haute.  However, as the fall went on, (again, very slowly) things went downhill again. It finally began to sink in that this is not a disease that just goes away.  I had been told that, and I could look you in the face and tell you that, but it took over a year to even begin to accept it. Because in so many ways, I'm still me and my life is very much the same, and I don't go to the hospital every week, and I just pace myself a little more.  But I realized that my eyes were so bad I was afraid to drive at night because I couldn't read the road signs.  I couldn't even read my music anymore.  And that I had started spending more and more time in bed again.  And the energy had been sucked out of my life.  

On a physical level this meant going back to the rheumatologist again and making a decision that I did, in fact, need a higher level of treatment to keep this disease in check. I need an expensive biologic medicine that comes in the form of a three hour IV every eight weeks or so.  On an emotional level, it meant accepting that my future may not look exactly the way I imagined.  This disease has a mind of its own.  I could have flare-ups here and there, I could go into remission and by symptom free for a very long time, or I could deteriorate slowly and go through the gamut of treatments...and if they don't work, they can always remove my colon (Boy does that sound fun!)  Whatever happens, my body simply cannot handle going 100 miles an hour all day, every day anymore.

A funny thing happens when the body is forced to slow down and emotions run high.  It leaves a lot of time to ponder the spiritual.  You must answer the question that most of us are forced to answer at some point, "Why do bad things happen to good people?"  And if you are a Christian, that question can be answered in a few ways.  You can determine that you have done something that deserves severe punishment and that God is a severe judge and is not love and is cruel to the people he created.  You can determine that you simply do not possess the required faith to exact healing.  Believe me, I've prayed sincere prayers for healing.  I've seen a lot of people pray for physical healing.  Sometimes, (even though there's a lot of fake-y fake quacks out there) I believe God does miraculously heal.  Sometimes, he doesn't choose to heal during our life on earth. And why is that?  Well...I don't really know.  I've struggled with that.  It doesn't seem fair that wonderful people suffer and die.  But I have seen how God takes pain and difficult circumstances and uses it to produce positive things...even beautiful things.

I have seen how my kids have learned to be more independent.  Sometimes I simply cannot physically be the parent I want to be.  My kids have learned that the world does not always revolve around them and that some of their needs are really wants and that they can do a lot more than they think they can.  When I was healthy, I did a lot of things for them simply because it was easier.  But they are beginning to figure out that they have an important part in helping our family function.  We are a team and sometimes, their role gets a little bigger when Mom is down and out.  I have seen how strong and secure the love of my husband is for me.  Even when I was underweight, weak, lethargic, mean, with gastric issues, probably needing a bath, and he had put in a full day at work, made dinner for the tenth night in a row and put the kids to bed by himself AGAIN (Um, not exactly a dream girl!), he would look into my eyes and tell me how pretty I was.  And I knew he meant it.  And he still does that. That, girls, is LOVE.

And then there's me.  Happy, independent, confident me.  Who feels pretty good about the work she does to help others.  Who has always been complimented by her bosses even though I've never made the big bucks.  Who always did well in school.  Who seems to get along with people pretty easily.  Who has been blessed with creativity and musicality and a decent brain.  Who had a great childhood.  Who had text book pregnancies. Who never had anything more than strep throat or the stomach flu.  Who has a wonderful husband, kids, church, friends and life.  Yet...struggled sometimes with being content, grateful or happy at all.  Doesn't make a whole lot of sense, does it?  But it's all about that central question for Christians- Am I living for self?  Or am I living for God?  When everything is going well, it is so very, very easy to rely on yourself and not on God.  I have been a Christian long enough to know that when I'm at the center of my life, somewhere deep inside I know something is out of whack.  When my identity is shaky, so is my mental well being.  If the world rises and falls around only my actions, my successes, my failures, that's a lot of pressure!  So I'm either a big puffed up jerky ball of pride because I think I'm awesome all the time, or I'm an utter and useless failure when I made a mistake or things aren't going the way I want them to.  But when I'm sick, I simply don't have the physical capacity to handle my life anymore.  That brings me to a decision:  I can call God a liar and throw myself the biggest pity party on the planet and become bitter and resentful about my health....or...I can trust that God is going to bring me through this and that He really does know far more than I do about everything, that He loves me even more than my husband, and that He has many purposes still left for me on earth to fufill.  I chose the second one.  And I find that I have more joy, more peace, less self-pity and less depression even on days that I feel like crapola.  It also doesn't hurt that I'm forced to rest sometimes, or ask for help and see all the truly kind and helpful people around me, or prioritize and do only the most important things and let some of the less important things go.

It seems odd that chronic disease has somehow made me more positive.  But before you schedule a therapy session for me, consider this. 2 Corinthians 12:9-10 says:
"My grace is sufficient for you, for my power is made perfect in weakness."  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong."  Right before these verses, the apostle Paul explains that he has a "thorn in his flesh."  I know there's a lot of speculation about what exactly he means by that phrase or whether or not it was a physical affliction, but regardless, it bothered Paul so much that he asked God three times to take it away.  And God didn't.  And Paul decided to delight in it?  And use it for God's glory?  So counter-culture.  So hard. 

So if you've ran into me during the past few months at the grocery store, or if you're a new friend, or I wrote something very cryptic on facebook and you scratched your head in confusion...This is kind of the stuff I want to tell you about but is incredibly awkward to work into any conversation less than an hour long.  Just putting words to it helps ME understand the whole process.  And I've got a long way to go.  But for now, the infusions are doing their job and aside from throwing my back out last week, I've felt really good for the past couple months!  My rheumatologist said my last blood tests show I'm a "normal" person. (HA! Define normal...)

So to recap Constant God I and II: Lots of stuff has changed in my life over the last 1.5 years.  Mostly, my health is questionable.  But my God is constant.  Let the blogging continue.

Friday, February 22, 2013

Constant God, Part I

I have felt for awhile that writing just wasn't in my scope...just too much going clear picture of what to write...but I feel the tide shifting.  So here goes...glad to have old friends and new with me on the journey!

My identity in some ways has changed again drastically over the past few months:  I resigned from my full time job in June. We moved back to Terre Haute in August.  I started a new part-time job teaching music lessons a few hours a week for my pal David Armstrong and the Creative Music and Arts Center. I stay at home most days with my fab-o four-year-old and do a tolerable amount of housework and a lot of playing. I occasionally take care of a couple extra kiddos after school. From August until now we survived a total remodeling of our living room, kitchen, and dining room. We started attending Maryland Community Church in Terre Haute and getting to know the people and ministries there.

So, yeah, I would say that's a significant amount of change.  Again.  The person I was a year ago is definitely not me anymore!

But one of the biggest changes is the most difficult to write about.  I don't want to be over-dramatic or a sympathy seeker.  I hate negativity and complaining to complain when there's so much to be thankful about.  On the flip side, I also fight self-pity and pride pretty much every day.  It's hard to let people in on the things that are not perfect or just plain ugly in my life.  But there is a certain awesome factor in seeing what God has for us to learn through struggle and pain...and how beautiful the Church is when they come around those who struggle.  So I will attempt to describe to you the biggest challenge I think I've ever had in my 33 and a half years- chronic disease.

In August of 2011 I started having eye issues.  I've always had sensitive eyes, too sensitive for contacts most of the time, bright light seems to be harder on me than most people, etc.  But I started seeing what I can only describe as cloudy vision.  Like I was forced to look through a foggy lens all the time.  Then my eyes became super light sensitive, red, and painful.  I went to my family doc who thought is was most likely allergies or an infection but after a few days, drops were not helping.   Off to the eye doc I went to hear news that is never good to hear from a doctor a few years away from retirement, "Well, I have never seen THIS before!"  I had bi-lateral iritis, an auto-immune problem where the iris in the eye gets inflamed for no apparent reason and the cloudiness I was seeing were all the white blood cells trying to fight an infection that wasn't there.  What was so unusual was that it is very rarely in both eyes at the same time.  He asked me about 18 times if I had any other auto-immune problems, as this is also rarely a condition people get without other auto-immune quirkiness going on.  I had to look at him completely baffled, because I was completely fine other than that!  I have always been pretty healthy!

Fast forward about a month later.  Mid-September I took some of my students on a leadership field trip.  I had mild stomach issues the whole day and was hoping it was just the flu or something I ate.  But I remembered what the eye doctor said.  Could it be related to my eyes?  Googling was scary but I am way too inquisitive not to do it, so I found Crohn's and ulcerative colitis(UC) were among the the nasty things that frequently comes along with iritis.

Time went on.  Kept having stomach issues.  My husband planned a very nice tenth anniversary weekend in Indianapolis for us and I was just too sick to enjoy it like I wanted to.  It's a strange disease because I've found my flare ups come about very, very slowly.  You think you're ok.  You make it through the day, but oh so slowly, it gets worse.  Any other time I had been sick, you rest, you take your meds, and you're back running full speed ahead within a few days!  I went to the doctor, suspecting it was something related to the eye problems, but it really takes time and weeks to figure out these things.  Mostly because you have to rule out the other 87 things it might be that are more likely and easier to fix.  So in that process, the more sick I became, the more tests they ran, the more weight I lost, the more doctors I saw, the less energy I had, the more I spent time on the couch, the more work I missed... it culminated in a week long stay at the hospital where I got a lovely colonoscopy and started getting some answers.  It was not infectious, it was auto-immune, and whether it was Crohn's or UC, the treatment options are about the same.  I was told Crohn's at the hospital, but eventually, a (very expensive) test confirmed it is UC.  Google and you will find more info than what you want to know.

I remember clearly meeting my rhuematologist for the first time in the hospital.  First of all, I suspect he is younger than I am.  (Surprise! When did that become possible?) Second, he is the most enthusiastic doctor I have ever met.  He obviously loves what he does and loves explaining things to his patients.  Third, he looks a lot like Harry Potter.  I kid you not.  Put a scar on his forehead, and there you go.  Fictional wizards aside, he honestly is a a God-given gift, because he is so kind and positive among the scary stuff his patients deal with each day.  Anyway, he gave me a clear explanation of my disease and what the strategy was going forward.  Of course it was way too much information for me to process then. I was not able to understand that this would be something I would be dealing with for the long haul.  Plus, I was starting to feel better and I was on a lot of steroids, which pretty much make you feel invincible. (Just sayin'.)  It was a long, slow recovery and education process during late 2011 and early 2012.

I'll write more about the post-diagnosis life, recovery, bumps in the road, and the emotional and spiritual lessons learned soon.  Really.  I've got all kinds of things rolling around in my brain and I will use way too many words to express it. 

But before I end part one, a quick shout out to my husband, Frank.  He sincerely was nothing short of amazing during this.  He cared for the kids, kept going to work, kept working to get the Sullivan house ready to sell (You know, just painting the entire outside of the house by himself!), and took care of a wife too sick to find much joy in about anything.  Also a quick shout out to Crossroads Community Church.  When my pastor came to visit me in the hospital, the staff thought he was my Dad.  We've known each other for over 10 years and he's the right age to be my dad...but that spoke volumes to me about the love he has for his church members. If you know Eddie, you get this.  Also, family, friends and church ladies had us drowning in delicious food!  Is was such a huge blessing to not have to come up with something for Frank to make or buy for him and the kids.  I always knew of the casserole phenomenon when someone in the church is sick or tragedy strikes, but I had never been the recipient of the Church Lady Casserole.  Best food ever, even though I couldn't eat very much at the time!  I'm sure my family was probably sad when I started cooking again.  But, I digress.  Isn't this is the way the church is supposed to function?  Caring for each other when the need is there?  We had been helping with the church plant for awhile and hadn't been back at Crossroads for very long before I got sick.  Some of these ladies barely knew us, but were willing to spend time and money on US!  I was so very thankful for that!  Never underestimate an act of kindness.

Ok, thanks for sticking with the rambling.  More to come in part two...