I was looking forward to writing an exuberantly triumphant post for day 100 but that’s just not where I am today. The truth is, I’m feeling the tension between the gratitude and loss much more keenly these last few days.
When I look back on the last 100 days I am astounded at how far I’ve come. There’s no way I could have predicted that I’d be hiking and running and biking again in only three months. I feel like I’m finally coming back to life. I can drive and cook and do laundry! I actually know what it feels like to have energy and contribute something meaningful to the world! I’m finally moving towards recovery! It’s incredible!
On the other hand, these last couple days with my family have really hit home what a fragile recovery it is. It hinges on a life that revolves around avoiding even minute amounts of toxic mold which is just as hard as it sounds. It’s a life of full time camping, frequent moving around, and lots of showers. One bad campfire, one moldy RV, one day with my dog from New York and I can feel myself slipping back into illness. That can hardly be considered normal.
So far, this is not a recovery of going back to the life I had before I got sick. It is decidedly a new normal. I can be healthy as long as the conditions are just right. But I can’t be healthy and spend time in water damaged buildings. I can’t be healthy and visit friends in moldy cities. I can’t be healthy and hug people who live in problematic locations. That’s hard. There’s just no way around it.
Is it always going to be this way? I don’t know. I still have a lot of hope for a more complete recovery but I expect that some level of mold avoidance will always be necessary. I doubt I will ever move back to the Pacific Northwest, for example.
I wonder about a lot of other things too. Will I ever be able to live in a modern building? Will this hyper-reactivity prevent me from attending important weddings? Will I ever be able to find a church that meets in a safe building? Will I ever be able set foot in a dance studio again? Will I ever be able to hang out with people who live in problematic environments? If we do have a house or apartment someday, will we be able to have people over?
I just don’t know and I’m learning to make peace with the unanswered questions. I don’t really have the mental and emotional bandwidth to worry about the future so I’m just focusing living today as best I can.
For now, I’m just grateful that mold avoidance has given me the tools I need to manage my illness. I finally have a measure control over my symptoms. There may be a lot of loss involved but I no longer have to spend my days in physical agony. That is a blessing that cannot be overstated.
By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.
25 Comments
I’m still excited you made it to day 100, Anna! And, I’m thankful I’ve been able to follow along and read about your journey along the way. I picked up my Papa’s Bible today, and dusted it off, then decided to flip through the pages and see if he wrote any notes. He was a pastor for two years before he passed away. I was surprised to find he had only circled a few passages, marked a few verses, left a few smiley faces (mostly next to passages about husbands and wives, that made me smile too :D). Then, I found the only highlighted verses were these, and I love them! Psalm 40:1-3 “I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings. And he hath put a new song in my mouth, even praise unto our God: many shall see it, and fear, and shall trust in the LORD.” Even though I too lack the “emotional bandwidth” (love that term) to focus on the future, I find hope in the present in verses like these. They remind me that the lessons and life learned and lived in the present, aren’t just for me, they are a testimony to others. As I learn to trust in the Lord for daily endurance and grace to go just one step further, my story (and yours!) inspire others to trust the Lord in their own daily lives. I was thinking about you and Brett today. I often think, “who would ever want to marry me, if I’m still really sick?”, but today I rebuked myself when I thought about how faithful you and Brett are to each other. I know, if your places were switched, and he had lyme disease and biotoxin problems, you would be right at his side just as devoted and caring and helping is! Marriage isn’t about two healthy people living together. It’s about two people who love each other, coming together to continue honoring and loving God together. That’s real beauty to me.
June 18, 2017 at 4:38 pmThank you for sharing your thoughts and that beautiful Psalm, Ruth! I definitely agree with what you’re saying and I’m glad our story could give you some hope for the future. Thanks for reading and commenting. I always enjoy seeing what you write. 💕
June 18, 2017 at 11:05 pmAna, the whole recovery process sounds bitter sweet huh? But how has Sara progressed? Is she able to do things she couldn’t do previously? I know it’s tempting to look at how far you still have to go, but you’ve came along way also. And I firmly believe you’ll continue to improve because God has big plans for you. It’s normal to be discouraged though and to long for it all to be over. Who wouldn’t? You’re very brave Ana!! God sees your struggle and He still has His eyes on you!!!
June 18, 2017 at 5:41 pmAww… Thank you so much Chris! Sara is definitely further along than I am and she can tolerate a good deal more exposures than I can. But she still has to be careful. I have hope for continued improvement but it’s definitely as hard process. Thank you for the words of encouragement!
June 18, 2017 at 11:14 pmAna, I’m so sorry that you have to go through this. It’s hard to for us outsiders to comprehend not being able to give hugs or visit friends or go where I want to. Reading your blogs, I can see the Lord’s grace sustaining you. Thank for continuing to not give up hope even when it life keeps giving you more and more “no’s.” You are a bright light testifying to the goodness of God through terrible hardship. I don’t have any nice sounding words that could make all your losses better. But I want you to know you are prayed for by so many. May God grant you a restful night’s sleep.
June 18, 2017 at 6:45 pmOh Bethany! This is so sweet! Thank you for being so understanding and encouraging. It’s very healing for me. 💕
June 18, 2017 at 11:16 pmAna, we are happy for all the progress you made, but sad that Ramona is still a problem for you.
June 18, 2017 at 7:07 pmWe are still praying for you every day. May the Lord give you complete healing. Love you and miss you.
Thank you so much Grandma! I’m so blessed by your continuing prayers. Miss you and love you! 💕
June 18, 2017 at 11:16 pmOh, wow. I would’ve never thought about all those things you just mentioned. I hope God works in you and heals you completely so you’ll be able to be and live and act like every other human being. 🙂
And remember, “…Do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Matthew 6:34
I love you, Ana! Big hugs for you and Brett! >3
June 18, 2017 at 7:25 pmOops! I was trying to make the heart emoji but apparently I did it wrong! Anyways, the >3 is a heart. XD
June 18, 2017 at 7:26 pmThanks so much Erin! I hope so too!
June 18, 2017 at 11:17 pmPraying for you guys Ana.
June 18, 2017 at 7:43 pmThank you Natalie. 💚
June 18, 2017 at 11:17 pmHard to know what healing will look like for you in the years to come, but I wanted to offer this thought…About 3 1/2 years ago I realized I had become lactose intolerant. In fact, it was so bad that even cross contamination from a salad at Shari’s made me very sick. I had to be so so careful. Now, I would say I’m still lactose intolerant, but the truth is I can tolerate a little heavy whipping cream in my coffee and seem to be okay with a tsp of butter on my potatoes. I have wondered how it could be so intense at one point and yet I can take far more liberties now. Maybe as your body heals and detoxes, it will be healed to the point where you won’t always need to be this careful.
I’m still praying for total healing and also for hope.
June 18, 2017 at 8:11 pmThanks for sharing your story Sarah! That’s really encouraging! I do think that as I detox and spend more time away from mold my reactivity will continue to go down and perhaps it will take much more significant exposures to cause a relapse. I sure hope so.
June 18, 2017 at 11:19 pmHey Ana, is so good to see you better. Your illness is teaching me a lot.
June 19, 2017 at 10:20 amGreet Brett for me. I’d really like to meet you, but that’s something your health can’t afford.
So I’ll keep praying and longing to meet you.
That’s so encouraging Martin! I wish we could meet too.
June 20, 2017 at 7:42 pmRejoicing with you in all that you rejoice, and grieving with you for all the ‘norms’ you’ve lost. My heart is with you guys, beautiful girl. Definitely hard to think of the fact that the potential contamination could keep me from hugging you or visiting you again, but I’m loving you from afar and love staying up to date with your posts, sweet friend. Praying for continued progress and a complete recovery beyond what you could ask or imagine! Hugs, hugs, and more virtual hugs from San Diego. Love you more than you know!
June 19, 2017 at 6:18 pmStephie!!!! So good to hear from you! Thank you so much for reading and commenting. I miss you! I know, it’s so hard to consider that possibility… I hope that eventually my reactivity will go down a lot but it may take several years. I just have no idea. Thanks for all the virtual hugs! 💕💕💕💕💕💕
June 20, 2017 at 7:45 pmYeah, this lifestyle really sucks, but avoidance sure beats the hell out of being beaten to hell.
June 20, 2017 at 7:56 amI certainly agree! On both points! 🙂
June 20, 2017 at 7:46 pmWow… I honestly can’t comprehend everything you’ve gone through on this journey, and I probably never will. There’s not much I can say, except that I’m praising the Lord for what He’s already done, and praying for healing as complete as possible! Thank you so much for your awesome example of faith and endurance! Reading your blog given me a whole new awareness of chronic illness and all that comes with it; if nothing else, now I know better how to pray. 🙂
June 20, 2017 at 4:03 pmWow! Thanks Katherine! This is so encouraging. 😊
June 20, 2017 at 7:47 pmYou may not be where you thought you would at this mile marker, but look how far you’ve come! It’s definitely something worth celebrating, even if it doesn’t always seem like much. I believe we should celebrate every little progress you make my dear! You’re doing wonderfully and I honestly don’t know a lot of people who could be as strong as you have been through all of this. Hugs 😀
June 20, 2017 at 7:44 pmThanks Ashley! I do agree that there’s a lot to celebrate. Every step counts even if there are setbacks. Thanks for the kind words! 💕
June 20, 2017 at 7:48 pm