Monday, August 19, 2013

Intro



In 2010, I started The Lyme Pregnancy Journal. I had recently miscarried twins due to Lyme complications, and I was fortunate enough to become pregnant again shortly after. The second time around, I was determined to "do it right," whatever that meant, and thus began my somewhat obsessive late-night internet searches for current information on Lyme Disease and pregnancy. I found a few outdated studies, some going back as far as the eighties. There was a general consensus from both IDSA and ILADS experts that Lyme can cause birth defects, miscarriage, and stillbirth. But that was it. At one point a "Lyme Pregnancy" image search offered a picture of a small turtle with two heads. Awesome. Thanks for that.

Long story short, I was irritated, nervous, and I felt like I was headed into some dangerous uncharted territory alone. So I said screw it. If no one's done it, I will. I'm not an expert or a doctor, but I have a Creative Writing degree that's been collecting dust for way too long, and I don't want any other woman to feel as scared or alone as I do now. And that's how the LPJ was born.

At first, I had three readers. Two of them were my very supportive mothers-in-law. The second was my own mom, who had no choice either way because I emailed her the links every time I posted. My goal was to eventually reach one stranger and make a difference.

Tonight I checked my LPJ analytics for the first time in over a year. Nearly 90,000 page views. Ninety thousand. Over the past three years, I have corresponded with hundreds of women who are sick, pregnant, want to get pregnant, having trouble getting pregnant, you name it. I've spoken to many on the phone when email didn't cut it, and I've cried along with them, because a.) I'm not a goddamn psychiatrist and I'm not wired that way professionally, and b.) I'm just a mom who has gone through many of the same situations, and I know how hard it is. I've made friends who have helped me during my own treatment; without them, I don't think I would have made it into remission. And my favorite: the pictures. There are no words to describe how I feel when someone I've never met sends me their newborn photos after a long struggle, with a note saying, "I did it! He/she is healthy and beautiful!" I keep them all in a folder, and I look at them on my darkest Lyme days when I feel alone in illness or I'm lacking purpose.

That brings me to the point of Leave A Light On, especially this post: I'm not sharing all of the above mentioned so you know how many page views my stupid blog received or that I'm a creeper who saves strangers' baby pics. What internet searches don't tell you is that there are so many women out there who are dealing with Lyme Disease, pain, fear, isolation, and depression, but there are also a whole lot of positive experiences when living the Lyme life, and we are not actually alone; We are a community of badass, tough-as-nails ladies. Many of us are in our thirties or early forties. We want to have families and enjoy them. We want healthy children. We want to be healthy ourselves. Currently, our internet searches pull up countless articles on the political war zone that is Lyme research and treatment. There are just as many personal blogs focusing on disabilities and daily pain mixed with a healthy dose of anger and resentment. This represents a part of Lyme life, but not all.

I was blessed to have a little over a year in remission. I functioned at a solid 85%, sometimes 90%, and was grateful for it every day. Why I'm no longer in remission is a story for another time. I've recently slipped very far and tomorrow my doctors will make arrangements for a picc line to go back in. I'm finding myself in a similar situation in terms of uncertainties and fear. I'm not pregnant anymore, but guess what? I'm sick as a dog and now I have a two-year-old and a three-year-old who don't slow down just because mom can't stand up for more than three minutes. What do I do?

I'm going to go with what has worked before: take it moment by moment, and share what I learn along the way. Maybe some of you will have advice on how to get through it. Maybe you'll just find comfort in knowing there are many of us struggling with parenting but getting through it all while we battle these nasty spirochetes. Either way, this is a continuation of the LPJ, minus the pregnancy part, and adjusted to the new chapter in my life, which is raising kids with a chronic illness. Thank you for joining me. I wish you all peace, strength, and good health.

6 comments:

  1. Dear Sarah, wow! I too was bit by a lyme tick just over 12 years ago, now that I think of it, 13 years exactly! I was 9 months pregnant with my now almost 13 year old daughter who was born 2 wks after the "spider bite" that I thought had gotten infected so much so that after a week of a full abdominal rash with a white center I went to the local ER. I was told by the doc on call, after he supposedly checked things out, that "there is no lyme this far north" (in Western Massachusetts) and being 9 mos preg I "chose" to believe him, wait it out, deal with it after baby was born. ....After baby was born: About a year and half later was falling all the time and finally lost all vision and movement in my right eye. I was determined to be full of multiple sclerosis and began the crazy insane immune-killing treatment of MS. Am writing right now as am coming down fm a lyme detox this eve, once again at 9 months pregnant and I am age 44! thankfully I am only slightly allergic to penicillin so my LLMD has me take Benadryl 20 min. before I take the low dose antibiotic. Was diagnosed with Lym 10 months ago! NOT MS. Not not not not .... my two older kids lost their mother for 12 years due to this misdiagnosis! Anyway, thank you for posting and our other writing: so hopeful. Am grateful and hope to be reading more. I know this present pregnancy is mediating my lyme herxes even though they are still rough and I lose 3-5 days per month in cognizance. During that time my house looks like a drug addict's. Then I am well for a few weeks, life is wild. Let us stay in touch!

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  2. (o! I am sorry for all the typos above.... here it is 3:40am in the morning and I just woke up fm a massive die-off tho just googled "lyme die-off and pregnancy" and found your writing and had to comment esp as you wrote the above just yesterday. Thank you!

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  3. You are so amazing!!! I love your positive outlook. I'm so sorry to hear you are in a bad spot health wise right now :( My husband and I both have Lyme and we have been in a pretty good spot for about 6 months now and are trying to get pregnant (I'm on antibiotics) and I am so hopeful! I'm grateful for your story of successful healthy births since there are SO MANY (like you said) stories that are downers. Thanks for writing. You are awesome and inspirational and I'm grateful to ya! Take care and I hope the picc line helps!!!

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  4. acf: Thank you! We have a similar diagnosis (and misdiagnosis) story! You definitely got a head start, though, and I admire you for toughing it out for so many years with raising a family while you were so sick. Congratulations on your newest addition. I remember my last month of pregnancy was brutal. Between the pregnancy symptoms and the Lyme, it can feel like you ran a marathon just by taking a shower. But it's almost over! And you will soon be holding the greatest reward. :) Please keep me updated on you and the little one. I hope your good weeks start to outnumber the bad ones soon. Hopefully it will be different this time around--you know what the real health issue is and you're treating it the right way. That makes all the difference. :) Good luck and best wishes to you!
    Danielle: Thank you so much! I remember you from the LPJ. I'm so happy to hear that you're both feeling well and are ready to start a family! This is huge! Please keep in touch and let me know how it's going. Sending you love and best wishes for babies (healthy and SOON!) :)

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    Replies
    1. Delighting in your writing! Yes we are all made of Light~~~ Light guides and Light is kind and Light holds the whole world. Thank you so much!

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  5. your LPJ was my bible during pregnancy. thank you so very much!!!

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