I find myself in a place of limbo, not yet having arrived at my destination, but having travelled so far, that I hover in this unknown region, uncomfortable, a foreigner and stranger in an uncharted territory.
A few weeks ago, I added an additional element to my treatment plan for my POTS, Mast Cell Activation Disorder, Gastroparesis, Interstitial Cystitis, and Ehlers Danlos cluster of diagnoses. I started working with a naturopathic doctor. Up until this point in my journey, I have been encouraged by some to stick with the world of western medicine. I have also been urged by many to dig a bit deeper into some more homeopathic remedies. With my chronically fragile state, which seems to hang in the balance between maintenance and dangerous reactivity, I have erred on the side of caution, sticking to what seems to be more conventional (and what is covered by most insurances).
I have come to the point, however, where I have had to ask, “Seriously, is this as good as it gets? Because I am not sure that I am satisfied with the bandaids that have been slapped on some gaping wounds.”
I come to this post humbly. I do not know the answers. I do not have the cure to any of these illnesses. It is a day-to-day, moment-by-frustrating-moment process. When your own body is your science experiment, it can get messy. The stakes are high. Sometimes, I am way too reckless in my experimentation, and my team has to reel me back into more moderate interventions. In my black-and-white thinking, if something looks like it is working, I ask “why not take it to the next level? If a little bit of something helps, I am confident that a bunch of it would cure me.” But life is not all-or-nothing. This healing process is delicate and slow, which is not incredibly congruent with my personality.
We are three and a half years into my disease, about two years into my uncharacteristic dependency on others and need for pretty constant care, and we have made some good strides. I am not where I was a year ago. I never imagined, however, that I would still be this sick this long. I can’t seem to swallow a long-term diagnosis. I keep thinking that it will end soon, and I will be back to normal, driving my kids to school, running laps around the track at the gym, volunteering to make meals for church members with new babies, and riding bikes with my kids to the pond behind our neighborhood.
And yet, I sit, restricted from 85 percent of the food in the world, with a distended tummy, purple hands and feet, constant shortness of breath and chest pain, with a heart that goes into maximum cardio zone every time I stand up, with joints that ache and scream if I accidentally eat more than ten grams of sugar, unable to think clearly after a ten minute shower. Last night, I was that mom who went to her daughter’s kindergarten round-up in a wheelchair pushed by her husband. As much as I try, I just can’t get used to being sick.
A few weeks ago, ready for an alternative approach, I sat in Dr. CJoy’s office, surrounded by her Christian Icons, very aware of the presence of the Spirit in our conversation. She had actually taken three days to pray for guidance from God before she agreed to take me on as a patient. When I learned of her humble approach toward my treatment, I was sold. I would definitely see her if she was serious enough to seek God before taking me on. Nothing she told me was surprising. We have been treating symptoms, not the actual diseases. Yep. Because the diseases are under-researched and relatively unknown, no one actually knows a ton about the disease process behind the clusters of symptoms. What if we could actually treat the immune system, the autonomic nervous system, and make lasting change? I don’t know if we can. I struggle with the idea of getting my hopes up only to get them dashed. But it can’t hurt to try her strategies. I pray that the more resources we have on board, the more thorough my healing process can become. I believe that some of her interventions have helped over the past three weeks; not as much as I had hoped that they would, but there are subtle differences. It seems that most things that are lasting and healing take time; Maybe that is the case here as well. Our goals are to regulate my histamine response, stabilize my immune system, and help normalize digestion (those seem pretty colossal to me; similar to climbing Mount Everest).
In a few weeks, we will be flying to Nashville, to the Vanderbilt Autonomic Dysfunction Center: Another angle that may be beneficial in increasing my quality of life and possibly offering some long-term treatment. After so many discouraging doctor’s appointments and dismal prognoses, I find myself struggling to hope for much (dare I utter the word “cure”??). It feels safer to expect nothing and be pleasantly surprised if we happen upon some actually effective treatment. But I know that this attitude can hinder the care that I need. I am praying for an open heart and an open mind to the different avenues through which God desires to offers healing and care. I am praying that my cloud of cynicism and resignation be lifted so that I am able to effectively communicate my symptoms and day-to-day experience.
At this point in the journey, I am tired. I am struggling to hold onto hope that the medical world has anything left to offer me. I do know that sometimes healing does not come this side of heaven. That’s okay too. But I’m not giving up yet. I’m going to keep pestering God, pounding down the doors, because I am reminded of that annoying neighbor in Luke 11 who wakes his friend up in the middle of the night and bangs on the door until his friend hazily stumbles out of bed so that the rest of his family can rest in peace. God wants to give us good gifts. Maybe my good gift is the gift of healing, and maybe it is the gift of God’s Spirit through illness. Maybe it is both. But nevertheless I’m going to keep pounding on that door.