Sunday, November 14, 2010

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.



  1. You are so great. This post made my day better. :)

    Thank you!

  2. Oh Maya, I am so sorry these last four months have been so hard. I know you work hard at being optimistic but I also know how disease can challenge your very instinct. It looks like you made some good discoveries and some good choices in the end. Think of this as a growing phase that will take you to the next level of awareness and healing. You are doing awesome.

  3. Steph: Thank you so much for your comment :) I'm glad my words could mean something to you and I think you're pretty great too

    Cathy: Thank you for understanding, as always. While I was in the midst of it all, I was trying to remember that one day I'd be looking back on that time feeling stronger and better for it. It was hard to see, but now I know you're right. You're very wise :)

  4. my sweet maya,
    i am so happy that you are coming out of the darkness and can see the light. you were my light when i was just diagnoses and in so much pain and i will be forever grateful for your story providing me the strength to come out of the darkness and really live again!
    i LOVE you!

  5. Oh Betsy, nothing could mean more to me. I feel honored that I could be there for you during that time and help in any small way. You are an incredible person and I'm so lucky to have you in my life. I love you and I'll never forget how you've brightened my days throughout these difficult months xoxox

  6. My, this post makes me soo happy, I think it's one of my favourites. It's just so 'you'; your strength, optimism and hope really shine through!
    You're an incredible person and your words are just more proof of that:)
    Sending so much love! xxx

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  8. Awwww thank you, my dear :) It means so much that you hear me in these words because you know me so well... guess I really am coming back. YOU are the incredible one, though, and I hope you see your own strength. I don't know what I'd do without you xoxox

  9. I am so sorry for what you have had to deal with.
    I really admire our strength to tell your story it has really helped me alot to know that I am not alone.

  10. Maya, I have been following your blog since Betsy shared a link to it. through your honesty, you bring hope to so many. God Bless you! Also, I am sorry to hear that you did not have a good experience withe the pain docs. I hope this is not needed, but Mayo would always welcome you for an evaluation and I am sure Betsy would be more that excited to have you come!

  11. Katrina: You are a bright spot in my day and thank you so much for your e-mail yesterday too. I will reply as soon as I can. I'm so happy to have connected with you and know that I admire your strength just as much. Your future patients are very lucky to have you xoxox

    To Betsy's friend: I'm so thankful that you've been following my writing. You sound like a very special person and it's no wonder you're a friend of Betsy's. Knowing my words mean something and that they connect me with people like you is all I need. I'll definitely keep Mayo in the back of my mind, but for now things seem to be settling down (crossing my fingers, toes, and even my eyes when I say that)

  12. Welcome back Maya. Glad to see you blogging again and coming back from what you have dealt with in recent weeks. Each battle for each chronic pain sufferer is unique but despite its uniqueness, you are never alone but someone always understands. Give yourself person to feel depressed occasionally especially when it feels like you just can’t get up but remind yourself that you can ask for your help in order to get up again. You will find a treatment plan that will work and you will be back to your old self a matter of weeks. The past few weeks will be a forgotten memory sooner than you think. Keep trying and as your mother told me, small steps and you will get there. Every day, you will be stronger.


  13. Hi Lana: What a nice comment and you're absolutely right - I'm never alone. Thank you for reminding me of that; you really have a way of providing me with hope and I'm glad I chose to reach out to you during that time. You are a wealth of information, wisdom and strength. All my best always <3