The Diagnosis - My Story, Part 3
It’s worth praying it, even when the belief staggers. The greatest miracle of my life (so far) was couched in the ordinary and based on a prayer I uttered, but didn’t truly believe. This is part three of my four-part series sharing the story of my many year journey. I’m glad you’re still with me. I hope I’ve turned my madness into a story that’s interesting enough for you to continue this ride with me. Hang on if you’re curious enough. I’m getting to the good stuff.
A year prior to my diagnosis I met one of my lowest moments. We had secured life insurance on me that doubled Mike’s protection in my passing. We had backed out of all of life’s commitments besides Mike’s career. We talked to people about it. We prayed about it. All of our ducks were in a row and I applied to a major health research institute. I was worse than I’d been yet and we didn’t expect me to survive the year of 2016. So, we threw all financial caution to the wind in our last stitch effort to find an answer. This institution holds promise for healing AND the ability to destroy my family’s financial future. I worried about their financial future in my wake. So, this decision was as monumental as any major life change might be. I had yielded to our financial fate. I had hoped for answers and healing.
I had applied. Then I waited. I waited until I was rejected. That’s right. Rejected from healthcare to seek answers of which no one else had taken ground for three years. Rejected from my last thread of hope. There were other research institutions. There were other locations for this institution. So, I stood at the fork in the road. What would I do next?
It took every thread of courage, determination, and hope to make the first application. But, to find courage, determination, and hope for another application seemed insurmountable. So, I did what all reasonable people might do in this situation. I turned into a puddle of emotions and lost all track of everything for a little while. So many questions. So many doubts. After what seemed like an eternity of this lost-ness, which was probably only a few days/weeks, I brushed myself off, straightened myself up, and scraped my brain for any ideas of something else I could do INSTEAD of another application. Had I missed anything right in front of my nose? Was there any way to avoid another rejection?
In a desperate attempt at avoiding that path of research institutes I changed my medicine/supplement mix (without telling ANYONE) and crossed my fingers. Within 48 hours I knew I had struck gold. I told a few people about the gains I was seeing and our hearts hoped for my survival for the first time in a long time. Within 2 weeks my trajectory changed. I no longer feared I wouldn’t see 2017. I felt terrible, but felt confident that I was no longer at the edge of my demise. There was much relief and rejoicing in our house. We chose not to pursue a research institute but instead ride this out as far and long as it would take us all the while praying for one of those miraculous stories when someone looks at you and instantly knows what’s plaguing you. I prayed, but didn’t dare to hope.
A year later our miracle came true.
I had gained great quality of life back due to the medicine/supplement change of a year prior. I was still very sick, but very sustainable. I knew things were digressing again, but wasn’t yet ready to admit I needed to darken the doors of a doctor again.
I make and sell hand-painted wooden signs, so I was selling my signs at a craft fair and making small talk with all my visitors. An amazing woman walked into my tent, looked at my signs, and we chatted. Upon learning her profession was medicine, I dumped my multi-year saga on her in 60 seconds. Without batting an eye or skipping a beat she named the root cause of my food issues. I laughed in nervous hope and then got her number. I called on Monday to set up an appointment. I held my breath until I could meet with her. Then I did. She ordered testing. She postulated my issues. Two weeks later the results confirmed it. Her hypothesis was correct and there were even two more diagnoses in addition. She cried and I sat stunned.
She cried because there are no medical explanations for how I survived all that time. She cried because the combination of three was treacherous. She cried because my major organs and body systems should have been damaged by the effects of my condition all those years unmanaged, but they were functioning perfectly. She cried because she knew what I didn’t, that treatment would be excruciating. She cried in thanks to God for having chosen to spare my life because it was evident that was the only reason I was still alive.
I was stunned. I had felt like I was fighting death in hand to hand combat all those years, but I didn’t tell anyone but my family. I had felt the icy, cold fingers of death each morning when I rose. I had felt like one ounce of dropping my fight and diligence would yield catastrophic results. I had felt like something inside of me was eating me from the inside out. I had felt like when I ate food I had to feed my beast before anything got to me. I had barely held onto my sanity when people thought me anorexic, weak, or crazy. I was stunned because every thought, feeling, and indignation was validated. In a way, I felt like I was set free from my emotional bondage.
I was stunned also because I had hope that had a name. I had hope that had a plan. I had hope that could be validated. It was the first time in four years my soul had something material to hold onto. There was a chance I could eat again. There was a chance I could live a normal life again. There was a chance I could be strong enough to keep up with my kids. I felt like I was set free from another cage of emotional bondage.
So, we made a plan and worked the plan. I asked her how bad it would be and if I should be concerned for my survival. In her candid and beautiful way she said it would be hard. She said that she had no doubt I’d survive it. But, for anyone else in my shoes she wouldn’t be so sure. She believed that God had spared me for a specific reason and it didn’t seem reasonable that now He’d take me away. I felt no choice but to fall in line with her hope and didn’t take up another thought about the chance I wouldn’t survive.
My cocktail of medicine and supplements was comical. One drug exceeded $4,000 retail every 2 weeks. Thank you, Jesus, for contracted insurance rates, which still blew us to our high deductible within just a few fills. The volume and combination of pills I took 6 times a day had me hopping every single day. Under normal circumstances, someone diagnosed with my treacherous combination would see significant improvement within 2 to 6 weeks. Mine took 5 months. But, at the end of that 5 months I was starting to see light, finally. I saw hope that things could get materially better.
See, the treatment was excruciating. With no responsibility in my life it could have had me laid up around the clock. Besides the physical symptoms, it messed with the balance of all of my hormones and neurotransmitters. The combination made me feel like a completely different person. I thought differently. I responded differently. I didn’t even recognize myself. I was as sick as I had ever been and living an almost out of body experience watching myself do things and say things that didn’t make sense to the normal me. All the while, I had a family to keep going and a career from which I could not take extended time off. So, I worked part time through it. I did Christmas. I did New Year’s. I did kids. I did husband. I did life as much as I could eek out.
It was an amazingly difficult thing to do. So amazing that I look back and don’t even recognize myself. But, it was worth the pain. See, when I started treatment I could eat five foods. Deviating from that short list would puddle me to the ground and make me wish I were dead. Five months later I could eat about 15 foods. And when I deviated from my short list I felt very sick. But I wouldn’t melt to the ground and I didn’t wish to be dead. The dramatic improvement was remarkable. Since then I continue on a steady supplement regimen that produces gains every month. My safe food list is longer than my dangerous food list now. And when I deviate from the safe food list I feel crummy. Food no longer lays me out as I continue to dance with my body and the beast in it.
I’ll never be fully cured of it. It will always be a dance for me. I’m willing to attend that dance three times a day at meals. A dance I’m willing to tell about because if this weren’t my dance something else would be. Hard things seldom have a clear end. Hard things seldom have a clear plan of action. Hard things seldom travel in only one direction. Hard things require several facets of us.
My hard thing requires I dance with it. This requires my physical focus and attendance. This requires my mental attention. This requires an artistic as well as practical approach to execution. This requires following some rules and breaking others. I choose freedom. Freedom to lead sometimes even when my partner is trying to lead. Freedom to slow down and speed up at the right times. Freedom to follow the general structure of good practice. Freedom to come to it with creativity and hope.
With what do you dance? I encourage you to frame your thinking in a way that could dare for hope. I stink at hope. I have friends who pray for it for me. I can’t pray for it myself. I have friends who gently encourage me when I feel hopeless. Hope is a tricky thing. It’s a fine line between reality and make believe. It’s a thin line between optimism and foolishness. These beautiful people held me up when I couldn’t hold myself up. I encourage you to share yourself with someone who will hold you up. I encourage you to re-frame your thinking. I encourage you to pray boldly and wait expectantly.
I got diagnosed. I walked through treatment. Now what? Am I all better? Is it all behind me? Hang with me. It’s not as simple as I wish it were. I’ll share with you in a couple of weeks about my surprising new diagnoses, continuing to dance, and making the most out of the days that offer me normalcy. Next week I’ll chat about looking beyond the surface of the things you face. About how new information can completely shift our understanding of things. I look forward to encouraging us to believe in greater things than it seems are true. Til then.
blessings,
