Chaos & Then One Step Forward Daily

Hello my wonderful readers,

I've been so moved by the messages and letters of support over the last few weeks. Many of you have told me that the posts that speak openly about my struggles are the ones that have meant the most to you; that they've made you feel less alone. Although it can be intimidating to keep writing when things get bad, you've all given me strength to continue. Deep down - however solitary this pain has felt -  I know that what I'm going through can't be unique to me. So I hope that my attempts to explain the past several weeks can help someone in some little way. If nothing else, I hope I can show that it's okay to be honest when things gets really hard.

I knew that after my Humira stopped working this summer, there would be a period of uncertainty until I found a proper regimen again. What I didn't foresee was the battle I'd be up against; that the process would be so prolonged after my allergic reaction to Remicade; that my pain level would become so extreme; that almost every day would be disrupted by various appointments and bizarre side effects; that I'd lose confidence in myself and my future. The people who are closest to me have reminded me that it's only natural to hit a breaking point after battling illness for 24 years (and especially after the last 4 months). I've tried so hard to remain optimistic, but over the past few weeks everything that's happened just caught up to me emotionally.

A few weeks ago, my pain was so extreme that I just couldn't function properly again. I was desperate for relief and so, for the first time, I saw a pain doctor.  This is when things started spiraling out of control. Because this doctor believed that, in addition to Spondylitis, my pain had a significant Fibromyalgia component, I tried various medications for this condition. Each drug quickly eased my pain, but also caused such horrific side effects that I had to discontinue them. For instance, I gave Gabapentin a try at its lowest dose - a medication intended to ease burning, nerve pain. It immediately lessened my pain, but as it got further into my system, I became progressively more depressed. Eventually, I couldn't stop crying. While I've felt down about my illness before, this was unlike anything I'd ever experienced - I wasn't me! I also lost my ability to finish my sentences while speaking or writing and I couldn't process what people were saying to me. It was a terrifying experience. After reading hundreds of patient reviews, I see that my experience with these medications are anything but unique.  Thank God for my parents who could tell me apart from side effects. 

After months of being on steroids and new drugs, it was hard to see myself clearly. I didn't feel like myself, I didn't look like myself, and after Gabapentin I didn't even think like myself. What medication was having what effect? Were these drugs helping more than they're hurting? With so many uncertainties, how could one not feel entirely lost and insecure? I felt completely chaotic and depression hit me in a big way. In this May post , I wrote about my first experience with depression during college. Because I'd been through it before, I knew I wasn't going in a positive direction. I was scared and started losing hope of ever getting better or living the life I'd been planning. I was losing interest in everything and crying at the drop of a hat. I wanted to sleep all the time, I lost my appetite, and my mind felt fuzzy and confused. I've never felt less like myself. Through it all, my family, John, and my best friends were assuring me that it was only temporary; that nothing could change me at the core. They were helping me see better days ahead. I'm infinitely lucky to have their love behind me.

Even though I just wanted to curl up under my covers, my mom (in her infinite wisdom) reminded me that I  just had to take steps forward every day - no matter how small they might be. It hasn't been easy, but it's working. First, I realized I needed to regain some control over my body. I made the decision to taper off every medication I could (steroids, pain meds, etc). I needed know myself again without those chemicals running through me. It turned out to be a great decision. Although I had to tough out some painful days, it now seems the Orencia infusions are starting to work! (I'll write a post about this soon). Every day my spirits are lifting and I'm feeling more like myself. I'm checking back in to relationships and school and am finding it easier to keep up with daily life. 

While I'm grateful for modern medicine, I'm now quite wary of it. I know I'll  be a different kind of patient moving forward. When I have more energy and stability, I will ensure I'm working with doctors who best fit my physical and emotional needs. Although I know my form of Spondylitis requires TNF blockers like Orencia to control inflammation, I will be trying everything else I can to stay natural in my pursuit of health. I will research medications and treatments thoroughly before ever putting them into my body. I will not count on medical professionals for validation - I'll remember to trust my instincts. I'd like to start seeing a therapist who works specifically with people living in chronic pain. I never want to feel that lost again.

To family, friends, readers, and all of you who have shown me love during these hard months - thank you again. Thank you for your prayers and concern - I have borrowed your faith when mine was gone. Thanks for reading and for being along for this journey, no matter how hard it gets.

Love,

Maya