I have felt for awhile that writing just wasn't in my scope...just too much going on...no 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...
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