Wednesday, October 16, 2013


I've had a lot of down time over the past eight weeks. It's been a period of intense treatment, but also a time for serious reflection that required solitude, something I've never appreciated until recently.

I had my PICC line placed in September and infused for a month until my insurance cut me off. It was a bad line from the start, with many clot scares and late night trips to the ER. In the end, I saw a little improvement, but I'm not quite in remission again, and since antibiotics are proving time and again to be ineffective for me long term, I'm exploring other natural options.

This month marks my fifth year of treatment. During this time, I've learned a great deal about Lyme Disease, from a medical/scientific perspective, as well as emotionally/spiritually. I could write pages about the ups and downs, symptoms, herxes, and backslide frustration. In the beginning, I probably would have. But if I'd dwelled on these negative experiences for five years, I don't think I would have made it this long, and I'm not concerned with specifics now.

Because, let's face it: This. Is. Hell. During the low points of these last few months, I found myself in strange new territory. In the beginning, IV treatment and a cabinet full of pills meant hope. Attack and kill the bugs. Get better. It would be difficult and painful, but it would be worth it. As the years go by, hope dwindles. The drugs, special diets, supplements, stupid salt baths and mystical concoctions are a band-aid, and ultimately, there is no cure yet.

There is no cure.

One night, in a tailspin after a trip to the ER, I repeated it to myself in the bathroom mirror. For some reason, after about the tenth time, it finally registered. What did that mean for my future and quality of life? Not gonna lie, I literally wanted to die. Then I bargained: "No. I will be PERFECT. I will never eat a bite of sugar, I will sleep nine hours each night, I'll take every supplement and never miss a dose--I'm just not trying hard enough. I'm doing it wrong." Then I got angry. I hated my situation, my doctors, family, friends, my own reflection in the mirror, people I don't even know, food, drugs, even the snot stain on the sleeve of my sweater. And in a moment of complete insanity, I desperately wanted everything I'd just hated, minus the snot sleeve. I regressed to a childlike state and imagined shrinking my 6 foot Amazon Woman frame so I'd be small enough to curl up in the arms of someone much bigger and stronger to feel protected and comforted. In the end, I curled up in bed with a death grip on my pillow, on the verge of hyperventilation, thinking, "The pain is way too much. I cannot physically handle this anymore. Please, please, please, someone take this away from me."

This is not the point where I tell you I had a wild spiritual experience, or that I gave my problems to God. That works for many people, I support and admire it greatly, but in this case, the resolution was quite anticlimactic. (This also isn't a total downer of a post--I'm getting to the good part soon.) I told myself to get it together and that I needed a solution because no one benefits from a pathetic heap on the bed. I then consulted The Oracle (AKA Google), very simply and somewhat stupidly: "How to be happy."

There's a lot of motivational material available, but the only thing I remember is an article about the seven characteristics of happy people. And out of those, only one stuck with me: Happy people express gratitude for what they have, and they do it ALL the time, every day. When it doesn't come naturally, they practice until it becomes a habit and doesn't seem foreign.

So I made a list. Despite the perpetual rain cloud that is illness, I was grateful for over twenty things, just moments after that ridiculously dark hour. I added more to my list each day. As I did that, I noticed I was cutting out the crap that didn't add any value to my life. For example, I was recently grateful for being able to walk around the loop in my neighborhood, as I was not able to do that a month ago. Instead of wasting time reading irritating status updates on Facebook, I used that time to get out and enjoy the foliage, because I was mindful of how much I appreciated it. If I wasn't feeling well enough to walk, I texted with someone I actually care to converse with and like getting to know. I am grateful for new friendships.

It's been a fine tool, and it's kept me sane while I try to relax and figure out what to do next. It's a step in the right direction at least, and it led me to what inspired this post:

Tonight as I was vacuuming up old goldfish from the snack graveyard under the couch, I asked myself, "What has illness given me?"

- A greater appreciation for things most people overlook: being active when I can be (the thrill of a leisurely walk is unbeatable), taking my kids places, even if it's just to the store, visiting friends, getting on an airplane (I did that a few times this year!),being able to sit outside for a while and enjoy my natural surroundings, etc.

- Knowing that my body might fail me, but I keep moving forward, therefore, I am more than my body

- Priorities. What's important to me? I don't have the energy for the typical overloaded American lifestyle, so when I do something, it's something that's worth my time and effort, and I value it

-It's allowed me to know myself, my body, and my limitations. I now have a healthy respect for all of these

- I can say no without guilt

-I am constantly reminded of how temporary everything is, and I don't take the people and things I love for granted

-I am learning to let go of fear and expectations

-I have a greater understanding of who really loves and supports me (who has stuck around) and learned to let go of relationships that lack substance

-I've made amazing connections with wonderful people, and some of them I have been able to help

Maybe someday I'll post a full list of how Lyme has been a gift. Not sure I'm ready to call it that yet, but I will say that it's been the greatest teacher I've ever had. That's something I can get behind, and it's what's transitioning me into acceptance. No, there isn't a cure. Yet. But we can maintain the health we have as best as we can. There will be periods of remission, during which we will celebrate, and there might be periods of painful days in bed with icky protocols. I'm starting to realize that this was the lot I was GIVEN. No amount of crying, questioning, hating, negotiating, or replaying old scenarios will change it. I believe with all my heart that we will never heal until we let go of the emotional resistance to this and all of the self torture that goes along with it. Our own thinking processes determine our wellness. Easier said than done, I know. I'm on year five. I can say that for every episode of melodramatic turmoil I put myself through, there is a greater sense of peace and understanding that follows. Completely worth it.

How about you? Anyone else grateful for something Lyme has given?


  1. Hi Sara,
    long time follower of yours, but never commented. I can say in a sick way, that lyme HAS made me a better person. I have so much compassion, less selfish, appreciate what I CAN do, and try to laugh as much as I can. I can just imagine myself without lyme. I would probably be a grumpy, over worked, over stressed hag, in the typical rat race. Also a huge thing for me was I gained some spirituality through this process. That was a big thing for me and probably would not have occured if I haven't gotten sick.

    Anyways girl, keep on keeping on, and keep those updates coming.. How are the boys doing? Any signs of lyme from them?

    I am 32 and about to take the plunge in to motherhood. You are a pioneer for us countless women in the same boat. Take comfort knowing that you have provided all of us "lost " young women with invaluable information and each and everyone of us thank you and appreciate you. You rock Sara! Never forget that, and yes be happy. Because you totally deserve it!!!
    Beca M.

  2. Thank you for continuing to post. I just found your blog today and I feel like you wrote it just for me. Your experience mirrors mine so closely. It is helpful to me to connect with someone who is walking a similar path, reminding me to simply keep marching forward, one day at a time, and to take time to focus on the beauty that is my life, despite my struggles and limitations. This has been my M.O. since the beginning, but it is always good to be reminded of it! You've inspired me to put the computer down and take a short walk around my house right now. Maybe hang out with my chickens for awhile. Simple pleasures....

  3. Hi Sara ~

    Not sure if you still write this blog or not, but I just wanted to say THANK YOU.

    Only a fellow Lyme sufferer can appreciate the herculean feat you accomplished in writing this blog, while in the grips of Lyme - not to mention having two kids as well!

    Found your Lyme blog today as I started researching Lyme in infants, and pretty much spent the entire day reading it.

    We have a 10-month old son and I've been very concerned about the possibility of transmission to my fiance/son, since this study on sexual transmission came out.

    It's something I'd read about anecdotally on various forums and support groups but this seemed to formalize a bunch of my fears.

    Anyway, just wanted to add my very sincere and very grateful THANKS for all your efforts.

    I hope you and your family are THRIVING.



  4. Hi Sara,

    Would love to know how you and your family are doing. I followed your pregnancies and would just like to know that you are doing ok.

  5. Hi Sara,
    I may have missed this in one of your posts, do either of your children have Lyme and what symptoms did/do they exhibit?