(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.
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