Lupus

I've been debated about posting about this for a while now, but with others posting about their own pasts and struggles, I finally have the gumption to do so as well.

Lupus.

Look it up in Wheelock's Latin, and you'll get the definition of 'wolf.' But look it up at WebMD, and you get a slightly different definition:

A term originally used to depict erosion (as if gnawed) of the skin, now used with modifying terms designating the various diseases listed below.

The term was applied to a skin disorder where the afflicted had blotchy red skin patches usually on the nose, face and scalp which resembled the facial structure of a wolf, hence the name.

As science progressed, it was discovered that Lupus is an Autoimmune Disorder where the immune system slowly attacts and can destroy connective tissue. There are three types: Discoid, Systematic, and Drug-induced.

Now, either why am I writing this or how do I know so much? I've got it, the Discoid kind with a few small manifestations internally. They say there is some sort of genetic predisposition to develop the disease, and as Mom has the much more serious internal form of the disease, I can somewhat believe them. But identical twin brother, nothing. You figure it out, it is a stupid disease.

Before I get much farther, my history with the disease. Looking back at annual school pictures, I started to develop red blotches on my nose somewhere around 6th to ninth grade. They slowly developed, but I remember by High School, my nose tended to be pretty bright red constantly. For a guy who was top in the class, in the band and not gifted athletically in a small town that seemed to only value athletics, this situation = death knell. Yep, heard em all. My particular loathing was Rudolph. Hated it, still won't watch it. While I did date during high school, and I am still friends with some of them, my high school experience was not one of immense joy. By the time I graduated, I hit the road running never to see that s**thole town again. (At least, I thought, God had better plans.)

During this time, I had gone to about every dermatologist in the area. (West Central Ohio does not have a plethora of dermatologists, either.) We never got a very clear answer as to what was going on. I was finally given a diagnosis during my first year of seminary (my second in college). I went to the GP of the seminary community for the flu, and he asked what my nose was all about. (You see, Doc, I use it to smell things and to keep my glasses on my head...) He referred me to a derm in Columbus, who took a core biopsy of my left temple to confirm what he thought was a classic case. Turns out, I hit enough triggers to be diagnosed with Lupus.

I thought, finally, get a cure and go on with my life, thank you very much. Not so easy. Trying to find the right level of the right type of medication is still a problem. I've been on them all. I've been injected, on topicals, steroids, anti-malarials, you name it, I've taken it. They all seemed to work for a while, but then the side effects took over and made them unbearable. (My personal favorite was Aralen -> totally bleached out pigment from my system. Now, I am a German by descent, and a northern German at that, but this was to the extreme! My hair (when I still had it) wasn't white, exactly, it was more of a clear color, sorta like a bleached blond, only worse.) If you look at pictures from Kurt's wedding, you can easily tell the difference between us, I'm the white one.

Well, I moved from Columbus to Cincinnati, and the best Derm was down the street from the sem, so something seemed to be looking up. But the same pattern repeated itself. A new drug would work for a while, but then the side effects got worse or the symptoms seemed to grow more resilliant.

So, we took another step up: Thalidomide. Yep, one of the drugs that helped lead the charge for the pro-death abortion movement. I hated being on it for that reason, but it was working. The lessions had cleared up, I could go outside and do things without too much worry. Sure, it was a pain having to take survey's every month, "Yes, I have abstained from sexual contact in the last month." But then, the side effects raised their ugly head. I noticed one day that I couldn't feel my toes, and then larger parts of my feet. My legs started cramping up badly. All possible side effects of nerve damage. WHAT!!! GET ME OFF OF THIS POISON!!!

Back to square one. Ok, not really, we had already eliminated squares one through 27. I think there are only a few left! I'm now on Humira Epi Pen where I get to inject myself every other week. It could be worse, I supposed.


Now, the lessons. I went through all the different stages: anger, denial, hiding, anger again. I thought: "Listen, God, I'm trying to do what you want me to do, why not heal me of this cause it would make it a lot easier for me!!!" That Quid pro Quo argument that I mentioned in my Sunday homily, know it well.

After several years, I finally started talking to my spiritual director about it. How to either accept it, or let it be a part of me. (I hate the "It's God's Will" arguement, let Him go 'Will' someone else!)

I think the biggest lesson that I take from this is humility. It is so tempting when I look in a mirror that I just see the outside manifestation of a disease that I have. I often don't look at my face, just my nose. I forget to look at the person below. Not in an egotistical sense, more like I get focused on the external and forget to stay focused where I need to be: God.

After now about ten years of having a diagnosis, I would say at least fifteen of actually having the disease, I am starting to get to some type of acceptance.
Could God cure me tonight? Yep.
Do I still pray for a cure? Yep

But I also recognize that it is out of my hands. I take my medicine, I use stronger sunblock than I can buy in the states, I always have a hat (or three) with me. But, God will have to do this. Apparently, something in my heart still needs to be broken before He will fix this.

Anyway, I do not type this out asking for prayers for healing. God'll do it when He wants to. I rather ask that you pray for those who face much, much worse situations and do not have the friends and support and have to walk a difficult journey alone.

The temptation when you face something like this is to think that I am going it alone. Especially in the Christian context, that is never the case. When one hurts, we all hurt; when one rejoices, we all rejoice