Imagine me sitting in front of you with both hands open, palms up in front of me. And in one hand I’m showing you a possible disease that will slowly and painfully wreak havoc on every end of your life, home, body, and mind. In the other hand, I’m showing you the treatment course to this disease and explaining to you that if you take this, you will probably die. Not as painfully slow and tormented, but probably rather quickly. This is my biggest fear right now.

The days are passing and I’m not showing signs of improving. I have my up days and my down days. But even in my up days, I’m far from feeling normal. And in my down days, I’m unable to get out of bed. I’ve gone to endless doctors appointments (sometimes up to six or seven a week) and seen endless specialists. I feel like I’m trapped in this endless circle of self induced hope and inability to find the answers or find relief. Outside of how I feel, there are few things I know— I know I never expected to still be here. I thought by now I would have more answers— and if no answers would be provided, I at least hoped that my body would be past this point— that I would be on the road to self healing. I have learned that it is not— or, rather, I should try to be hopeful and say that I might very well be on the road to healing, but the endless circles of ups and downs has unfortunately shown me otherwise.

A good, handful of doctors have told me ‘lyme’. Many of you have written to me and told me to keep a look out for lyme. My symptoms do match with many of those to lyme. No part of me wants to be okay with this answer. No part of me is willing to yet  believe it or accept it. If I have lyme, I am helpless. The treatment for lyme? antibiotics? Go back a few months— to almost the beginning of this all and find the reason I almost died: antibiotics. I’ve tried hard to not over think it, and especially not to read into it— not yet. Everything is too controversial around lyme disease, thats for sure. Some say I’m low risk living in Florida. Some say no way, that it really doesn’t matter, it’s truly a possibility. The reactive bands that appeared positive on my test leave me asking questions. Is this lyme? I don’t know, but if it is, it feels like a death sentence given my recent encounters with c. difficile.

When I think about this possibility I have the constant internal battle of shit out of luck combined with trapped in a hard place boxing an endless reappearing optimism that maybe it’s all simpler this this, that it wont be lyme, and if it is, maybe I can some how overcome it anyway….. somehow. I met with an herbalist recently to start a four part regime of herbs. To treat me for multiple things– an anti-parasitic, anti-bacterial, anti-viral, and anti-spirochete blend, to not only help with the possibility of lyme— but any other possibilities that are still open and lingering. As well as things to help with my digestion and weakness. I’m happy to report I’ve suffered no side effects from the herbs, which for me, is nothing short of a miracle— my body reacts with great sensitivity to almost any medicinal treatments, natural or not. The only thing I can do is believe this treatment will work. And if nothing else , at least hope for some sort of placebo effect.

Over and over, a constant reminder flowing through my ears— that the mind is powerful and I have to help my body fight this battle. Even if I’m not exactly sure what battle I’m fighting. All I know is, there is something there. I no longer believe the hopeful words that “this is part of recovery.” I know my body too well to continue to believe this statement. This no longer feels like recovery. Yes, my gut is in recovery, I’ve seen great improvements, but I’ve been sensitive to this body for years and I know, there is something more. There is something that does not belong inside of me, holding me back from fully healing. An acupuncturist I saw said it best, “at this point, it doesn’t matter what it is, you just need to overcome it.” She followed up her statement explaining that it wasn’t meant to be an ignorant phrase but rather, an intention to just keep moving forward. I’m trying.

I’m sad to say that many of my days are becoming emotionally harder. I’m starting to lose hope more often now. I think of Marlowe and I can’t help but cry. I want so badly to believe that things will get better, that my life will return to what it was— or on the preferable days, I want to believe my life will not only be what it was, but somehow be better than before. But I can’t help dismiss the fear that whatever this is will kill me. I feel helpless in the possibility that I wont be able to watch her grow up.    That I might not send her to school, cook her meals, tuck her in each night, or show her the world. That everything I had hoped for this year and every year after this one might not be an option for me anymore. I think about what her life will be like without me. I know she’ll be okay. I know Alex will show her love, art, food, a beautiful life— so many of the things I hoped and hope to share with them. But I wonder what their functional life will be like. He can’t raise a child alone with his career. Chef hours wont allow for it. It was already a big enough concern to what the three of us would do once Marlowe started school with the hours he works— but if I’m not there? Then what? And I fill my mind with endless, sometimes seemingly pointless questions, trying to figure out a future that I might not be part of— all in hopes to still, somehow make their future more manageable, less stressful, and more giving to them both. Life is so far from guaranteed. There is no guarantee in any of it— and each day that passes with no sign of my life returning, well, I don’t know, I’m just fearful and tremendously sad. My life and family has been on hold. On stand by for my health. So much sacrificed. With no promise of an outcome. I want my future. I want my future with my family, and especially with Marlowe. I want the life that I was on track for– the life I worked so hard for. There is so much possibility in that little soul of hers. I want to watch her grow up. I know what she does will be nothing short of amazing and I want to be there to see it.

I spent years trying to find myself, trying to make my life, trying to find a comfort in my own mind, body, and soul, and find joy in my story. And I feel like I finally achieved that place where I was satisfied in my continual growth, within me and around me— for myself and for my family. And now the days come where I feel as if the possibility of future is each day being plucked away. What will my day be like today? I don’t know. Tomorrow? I don’t know. Next week? I don’t know. I just want to feel better. I just want to find joy and comfort in the simplicity of each waking day. I had big plans for this year, for my life and I’m not ready to give those up yet. I am not ready. I want to believe that this will pass. That this is another step in my story. That something will come out of this— but more importantly that I will be there to see it.

I’m not sure what to do this with this space. I don’t want to leave it. On the down days, there is no physical way for me to be present– and on the up days I’m not sure what to put here. Sometimes I just want to go on, fun, colorful business as necessary, but then that doesn’t always feel right. My emotions are scattered and I’m torn between how to act. Sometimes I’m hopeful with a positive outlook and I try to embrace that feeling, looking past this all and sometimes I just don’t have the energy. It’s been a really long time since I just poured emotions into this space. It doesn’t feel like it completely belongs—  but thats a good thing I guess, showing me how good I’ve had it. How blessed I’ve been. I’m not sure what or how I’m supposed to feel now, there’s no closure here. For now, life just is what it is. All I can do is hope for the best, even in the moments when I fear the worst.

Thank you again and again to those who have continually been there to support me. Through the ups and this tremendous down. I’ll be sharing those recipes I promise this week— I’m scheduling them now, so no matter what comes ahead of me this week, that promise of a bit of good is there. There are a million more thoughts and things I could write and probably should write, but for now I need to rest my mind. I hope you guys all have an amazing week. Whatever is in front of you, I hope you make it amazing.

73 Comments

  1. You. Are. Amazing. Thank you for sharing your thoughts, life, love and soul with us. Everytime I receive your post in my inbox it's truly a joy. You are an amazing person, mother, and full of life. Keep on keepin' on. This will pass. This has not gotten you down. We are here supporting you. You can do this. Even if it takes baby steps.

  2. You will heal, you will get through this. Thank you for being so honest. You're readers all know a glimpse of what you've been going through. Do whatever feels right. We'll be here.

  3. Oh Drea, I know we don't actually know each other, but my heart goes out to you.

  4. Look up hyperbaric medicine. It's something that is unfortunately used often in the US because of insurance policy, but abroad it's often used. There are some specialists who may be able to help. Northern California where I'm from has high incidences of Lyme and there are some great doctors there.

    • Phew this has really brought tears to my eyes! What an absolutely rotten and unfair ride you are on right now. Don't give up hope… ever! I can recommend an extremely good, alternative doctor who saved my life many years ago but he is in Germany and I don't imagine you'll be traveling there any time soon. I feel your pain though and thoroughly understand that feeling of seeing endless doctors with their endless tests and promises of recovery, only to see yourself continue to get sicker :(. When the time is right I'm sure you'll suddenly stumble upon the right person to help you recover. Until then stay strong. Xx

  5. Have you heard of/read/know of the blog littlepinkmonster.com? She had what she thought was lyme disease too, but after a lot of tests and appointments it was something else. I'm not sure what it was in the end, but you can always send an email her way? Just an idea. Hope you figure it out and get better ASAP!

  6. I am SO SO sorry to hear that you're still not feeling well. That is so sucky. I think of you, and pray for you, often. I don't know what kind of faith you have, but in the Bible Jesus healed people again and again when they believed in him. Here's one instance: "And they came, bringing to him a paralytic carried by four men. And when they could not get near him because of the crowd, they removed the roof above him, and when they had made an opening, they let down the bed on which the paralytic lay. And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.”" Just an idea… he has the power to heal, try praying to him 🙂

  7. Drea, I have an autoimmune disease and its beginning, sounds a lot like what you are going through. Can you do a post on exactly what a bad day consists of? Every aspect of it if you can. It might be a long shot, but maybe I or someone else will see something familiar and be able to get you some help. <3 much love sent to you

    • I've done quite a few rheumatology tests over the past few months. I was told by maybe 5 (++??) doctors that it sounds like an auto-immune disease, but we've really ruled out everything— except lyme– which basically falls into that category anyway, with all the facts it has on people.

  8. Im so sorry you are going through this. I went through something similar (but maybe not as serious) as what you are going through…neuro symptoms I couldn't find answers to, very scary, and reading the internet put me over the edge (google said I had ALS). I often wondered if my kids would have to grow up without me…thankfully finding a Dr. that healed my gut with fermented foods and and anti-inflammatory diet changed my life. I really think you are on the right track. Keep us posted… xoxo

    • I'm so happy to hear that— food really can change everything. I live the most anti-inflammatory diet possible— I mean, I mostly alway shave, but now theres nothing that causes inflammation going into my gut.

  9. It breaks my heart to hear your fears. You are so brave to put this out to the world, but I pray that you find comfort in these words. No matter what tomorrow brings, embrace today, and love the ones you're with.

  10. Drea, thank you for sharing so much with us. you are loved all over this world. i am sending you nothing but love and positive vibes in hopes you heal. you're an inspiration. <3

  11. My comment dissappeared when I clicked publish grr. So my friends live in India and have done for about 22 years. I lives with them in Delhi for a few months. I remember the mom saying she lived with a disease that effected for a couple years, she is fine now. If it even helps slightly I would be happy to email my friend and just ask her about it, I'm sure your doctors have it handled but happy to ask if you would like. Also my brother had Malaria for a few weeks and no one picked up on it till he was 10 kgs lighter always worth a check. Anyway email me cazbouffe@yahoo.co.uk if you would like me to ask my friend. Just thought even if it maybe helps:)

    • Thank you Carey— 99.9% certain its lyme– but speaking of india, I was (not very) surprised to read of cases just north west of Delhi– who needed up more with bruise marks than the bulls eye. Not sure if I got it there, there are crazier things, but right now everything is such a huge mystery! Anyway, thank you.

  12. First of all, that flower is kind of creepy. Second, I cannot believe you are still dealing with this shit!!!!! I seriously thought that in 2015 our technology in science and medicine would be able to figure out and heal anything by now, but clearly I'm wrong. I am SO sorry you are still sick. The healthiest person I "know" and here you are going through health issues. It's not fair and makes no sense. I really hope things improve for you soon.

  13. Sending healthy vibes your way! I hate that you are going through such a horrible ordeal! You are a wonderful person and you have been such an inspiration to me and many others!
    I wish you all the best and hope for your recovery!

  14. Drea, I am so sorry that you are going through this illness. I have full faith in the universe and believe that positive, healing energy will find its way to you and heal you. You will be there to see Marla grow up and experience all those wonderful dreams you have of life with her and Alex. *hugs*

    • I've been there once before, maybe ten years ago— I'm sure a lot of their detox offerings will become part of my routine once I get back home <3<3

  15. Oh Drea,this kills me,Ill be sending positive energy while doing my meditation and praying that you will found answers and get your life back soon <3

  16. Ditto, ditto, ditto. I'm sending good vibes and positive, healing thoughts. We'll always be here for you when you need us.

  17. I am so sorry for everything you are going through, I can't even imagine. Stay strong and keep looking for answers. My prayers are with you and your family!

  18. Drea, I've learned so much from you over the past couple years. Thank you for sharing your journey with us. You are in my daily thoughts and prayers. I read this quote shortly after reading your post this morning and thought of you…

    "It always seems impossible until it's done." – Nelson Mandela

    Stay hopeful,
    Elly

  19. I honestly don't know what to say, but I hope you feel a lot of support from the people who have discovered your lovely corner of the internet. We'll support whatever you choose to do with this space. Sending love, health and happiness your way. ♥

  20. Dear Drea,
    I hope you know that you've touched many many lives with this space. Your light has reached us in all the corners of the world. Ive just came back from a trip to south Florida where I visited lots of places in your South Florida guide.We live in France and people were surprised that we knew about those beautiful but less known sites. Of course I kept talking about you to every body…
    All to say that we are sending you love and light, healing is in it's way

  21. Long time reader here. Please don't worry about this space, just rest and take your time. I have been coming here for years and don't mind scrolling through old posts.

  22. Every day is a blessing. I pray that you have many, many more, Drea. You deserve them. You deserve to make it through this and see Marlowe grow up. You deserve to heal and feel stronger and be the woman we know you to be, if not stronger. You are such a beautiful person, inside and out, and I want you to know the influence you've had on my own life. One year and three days ago, just weeks after I started reading your blog, I went vegan. I started appreciating things more. I learned to thrive on the little things, the moments. I learned to explore, to accept, to strive to be the same influence that you are and have been for me. I pray that your body (and mind) overcome this and your life is restored to you again. I love your openness and honesty and feel like I've gotten to know you like a sister through your writing. You are in my heart and my thoughts and prayers and we are all here for you. I wish you healing and peace!
    ~ Samantha

  23. Sending positive thoughts your way. I hope you get the answers and the healing you need soon.

  24. Drea, I am sending you healing thoughts, as I know many of us are, and you will get better or at least find peace with what is, I am SURE of it. This uncertainty, this fear that you express here is going to disappear. Everything is temporary, even this.

    This part of Khalil Gibran's "The Prophet" always speaks to me when I'm shocked by some moment life seems unfair. I hope you find it helpful too:

    Your joy is your sorrow unmasked.
    And the selfsame well from which your laughter rises was oftentimes filled with your tears.
    And how else can it be?
    The deeper that sorrow carves into your being, the more joy you can contain.
    Is not the cup that holds your wine the very cup that was burned in the potter's oven?
    And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
    When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
    When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

    Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater."
    But I say unto you, they are inseparable.
    Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

    Verily you are suspended like scales between your sorrow and your joy.
    Only when you are empty are you at standstill and balanced.
    When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

  25. I'm praying for you, your health and your family. I now that's not much but I belevie that even a little bit of positive energy can make miracles. So I'm sending to you a lot of prayers from Poland.

  26. Thank you for being here, Drea. If there is a blogger that does care about those who are out there, I haven't met anyone but you. I still cannot believe it is happening, it is not the way it should have improved but I do know you'll be there, you'll recover and you'll have your life back.

    And there is October, the time you will promote your book (I'm impatiently awaiting its arrival ;), please do visualize that time, all happy and healthy signing the first page. You can even prepare clothes you'll wear on the opening night. Jewellery. A lot of sparkle. Tomorrow is looking good, I know that. xxxx

  27. With tears in my eyes I write to you with empathy. Your greatest fears are mine as well that maybe I won't get to see my two amazing little guys grow up to be strong men in spirit and body. I hope for a recovery from your mystery illness and for you to feel one day fully you again – to wake up lightly with the world full of possibilities once more. There are many people, known and unknown, holding you up, wishing and praying for you to get better.

  28. I just want to continue to send love, good thoughts, and positivity your way. I know it doesn't really help much, but you are incredible and we are all here for you in any way that you need.

  29. I am so sorry you're going through this. I have no idea what to say, but couldn't read this and not say anything. My thoughts and prayers are with you:)

  30. My heart truly and deeply aches. All of the healing energy I can muster I send to you and your family.

  31. Oh Drea, I'm so sorry you're still so ill. I do so hope that things improve for you very soon. It must be so very hard not even knowing what it is. Try not to have too many dark thoughts, although I know that must be very difficult. I'm the sort of person who imagines the worst, so I know how hard it is to close those thoughts off, but it's very unlikely to be that bad, however scared you are now. You're in my thoughts tonight Drea, and I'm sending you a big cyber hug and heaps of positive energy. CJ xx

  32. My daughter who is now 3, had c diff when she was one. It took three months and two different doctors to finally listen to me and get her treatment for it. I am sending you all the good vibes, and prayer!

  33. Hey Drea,
    Thinking about you and sending good healing vibes. Have you thought about going to Mayo Clinic to get tested?
    K

    • I went to a doctor who mentioned the mayo clinic— when I showed him my lab reports, he said "oh, you've obviously done more than that" :/

  34. This feels like you are saying a just in case goodbye. Don't lose faith. You could be a heart beat away from getting better. Dr Lissa Rankin has a lot of good info on mind over body on her blog here http://lissarankin.com/blog. I know no advice will make you better, so I'm just hoping the very best for you and I send you love and light.

  35. You've been missed in this space, but your family and health should always come first. They are right just keep moving forward…I will hope for you that you will get better, because I believe that is the outcome you deserve. Chin up.

  36. I ve discovered you 20 monta ago being pregnant To bu little boy and since then we grow together, me my boy you and Marlowe.. You are part of my everyday life.. It just happent to have similar way of life and similar fears and loves etc etc.. After you left for Indian I've lost the connection with you.. I was busy, moving houses and Countries… And now I read this.. I'm shocked… But not scared… God gives us what we can handle… And u are a fighter… You found love.. And you need to spread it around… I have nothing to hope or wish.., cause everything has a solution.. The only thing I want to share with you is that THERE is a natural treatment (there is no cure.. They just put the virus to sleep)… http://healthwyze.org/index.php/component/content/article/593-naturally-curing-lyme-disease-and-chronic-lyme-disease.html That's the link that matches what I know fur this disease and its "cure" plus an advice.. Find Natural Ganoderma or Reish (same thing) pills and start taking them.. They assist in many treatments… Hope you ll find the colours again.. And u ll start running around preparing the next Taco Day and start being creative on toast!!!! Lots of love V from Greece

  37. Oh Drea, my heart hurts reading this. I have been reading your blog for years and it is truly a favorite and even though I don't comment much, I read and I pray. Sending love, hugs and prayers your way!

  38. I just want the universe to envelop you with love and soothe you, soothe you. Heal you. With all my being I want that for you, Drea. May your body and spirit learn their way through this and return to you your whole life, today and tomorrow. I am amazed by you. Much love.

  39. I love you, my friend, and I wish I could tell you everything is going to be ok. Thank you for being here, and I know I am not the only one sending positive, healing energy your way (whether that works or just makes ME feel better, well, that's a different story).

    This is so unfair. You don't deserve this. Those are things I keep thinking to myself. But that reminds me of one of my favorite TV show quotes: "I used to think it was awful that life was so unfair. Then I thought, 'wouldn't it be much worse if life *were* fair, and all the terrible things that happen to us come because we actually deserve them?' So now I take great comfort in the general hostility and unfairness of the universe."

    I hope things start improving and that you get some REAL ANSWERS soon. And in the meantime, if you ever need to talk — I am here. <3