learning about lyme

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If you follow me on Instagram, you know I’ve been dealing with some serious health issues, and what seems to be Lyme Disease. I say “seems to be” because I’ve entered into a very grey area of medicine, and no one really wants to confirm the diagnosis…yet. Even though I still have many questions to be answered, I want to share my story thus far, considering May is Lyme Disease Awareness month. Almost thirty days ago, I was struck with flu-like symptoms – extreme fatigue, chills, joint pain, headache, sore throat. I figured it was a viral infection or fibromyalgia flare, knowing the stress of our move probably weakened my immune system. The next day I developed extreme nausea and loss of appetite but still figured it was a weird virus that had to work itself out. Those symptoms continued off + on for a few days, until very suddenly, I developed extreme knee pain, to the point where I could barely walk (fyi I’ve never had knee or arthritic issues). It scared me so much that I went to urgent care, where I was informed my symptoms aligned with Lyme Disease.

I was told to watch for a bullseye, contact my primary care doctor, and be tested for it in 4-6 weeks (it usually takes that long for it to show up in your blood stream). Having minimal knowledge of Lyme Disease, I became immediately immersed online and began to educate myself. I saw my primary, and they agreed to test me based on my symptomology, even thought it was early, and I had no bite or bullseye that I knew of. While I waited for the results, my symptoms continued to get weirder and seemingly more specific to Lyme (to include scary neurologicial stuff). The test results came back – I was negative for Lyme according to the CDC. Here’s the kicker: the CDC does not consider someone positive unless all FIVE bands of testing are positive. I currently have two positive bands showing up, using the most standard test, the Western Blot. I now know, after reading How Can I Get Better, that this test was never intended for individual diagnosis. Meaning, it’s not sensitive enough – it does not pick up all strands of Lyme and related bacteria. In fact, over 80% of cases are missed by the negligent strict CDC standards, especially those with chronic Lyme.

Without delving into more technical facts and figures, the bottom line is this: I know my body, and I know I’m ill. I’m suffering from a highly polarizing and political condition, and I have a long road ahead of me. I’m so thankful for this community and the outpouring of love and support I’ve received via social media. In fact, because of that, I’ve been in touch with quite a few people with similar stories, and they’ve given me hope. They’ve helped me understand that I’ll have good days and bad. The good ones will make me question whether I’m truly sick at all, and the bad ones will scare the shit out of me (like yesterday, when I couldn’t stand up without intense vertigo, had double vision and numbness in my limbs, and could barely care for my kids). I’m waiting to be seen by a specialist, and have contacted a few alternative medicine doctors as well. I’m hoping to have more answers soon, or at least have a plan of attack. I’m continuing to arm myself with education about Lyme, and won’t stop until I get the help I need. Now more than ever, you have to be your own advocate. No one is going to care about your health and wellness as much as you do. Thanks for reading, and if you’d had Lyme, know someone that does, or suffer from a chronic illness, I hope you’ll share your story here.

little moments, big kids

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I’m trying to wrap my mind around the fact that my babies will be five years old soon. What feels like all of a sudden, they’re sleeping in “big kid beds”, telling me that they want to do it “by myself”, and wanting more independence. I know this is a good thing in the long term, but it’s so hard to swallow in the short. I’m somehow now the mother of two children. Not babies, not toddlers…CHILDREN. I’m holding onto four with all my might, with five approaching at warp speed.

The passing of time is never more evident than when you’re a parent, and yet simultaneously, so much more of a blur. The little moments (that are actually quite big) can easily get lost in the background of every day chaos. I’m doing my best to be more conscious of the bath time giggles, lazy mornings, and Sunday cuddles. We still have these moments, but they’ve evolved into “big kid” versions of them. No less special than before, but possibly…more treasured.

pajamas c/o burt’s bees baby, many thanks for being part of our journey all these years!

musée rodin paris

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The Musée Rodin in Paris is situated in the seventh arrondissement in a stunning mansion, surrounded by three acres of gardens. I made it a point to see it during my last trip, and was joined by my family who drove in from the Loire Valley. It had been pouring rain prior to our visit, and as soon as we arrived the clouds parted and the blue skies and sun returned. I’ve said it before but will say it again – the weather in Paris can be so temperamental, especially in the spring. However, it was such a gift that day – the gardens were gleaming and the combination of these huge lilies and the dewdrops took my breath away. Even if you’re not a huge fan of Rodin’s work, the mansion (known as the Hôtel Biron, where Rodin once resided), gardens, and unique perspective of the nearby Les Invalides will make it worth your while.

 

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la fête du muguet

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Today is La Féte du Muguet, a French holiday which dates back to the Renaissance. The tradition is to give your loved ones Lily of the Valley for happiness, good luck, and to welcome spring! While it’s a bit hard to find in the states, I stumbled upon these beauties last spring in Milford, PA at Grey Towers, the home of Gifford Pinchot. A few fascinating facts about him: he traveled to France to become the first American trained in forestry, helped to develop (and lead) the U.S. Forest Service and was a renowned conservationist, and became governor of Pennsylvania in 1922. I’m always happy to stumble upon links to France like that, especially in my own state. Bon #1ermai, as they say, and if you’re looking for even more of a (daily) Francophile fix, join the global community of @thefrancophiles on Instagram!

hineni

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I’ve been taking a bit of a break from (my) social media lately, and it feels good right now. What began as an unintentional hiatus due to our move organically became an intentional, and dare I say – necessary one. We’re feeling happy in our new home (despite the chaos of moving), and I’m appreciating the little things. Our previous master bedroom didn’t have a window, and just having light in our bedroom for the past few days has been incredibly uplifting. I know that sounds silly, but deprivation equals appreciation. That philosophy applies to many areas of my life – I’ve been too busy for too long and I’m ready to make time for myself, and for my family as a whole. I took a break from the boxes for a moment this weekend to leisurely read the New York Times in bed, which as any parent knows, is such a luxury. This article was waiting for me inside the pages of T Magazine, which is just what I needed to read, and moved me deeply. I relate to it on so many levels – it goes far beyond the topic of music and artistic creation, and introduced me to the word and concept of, hineni.

The expression hineni means “here I am” in Hebrew, and is used in the Old Testament. Some interpretations associate the word with an even more powerful meaning, which is “here I stand”. Leonard Cohen used the term in his song “You Want It Darker”, and when asked by a reporter what inspired him to use it, his answer was the following: “I don’t really know the genesis, the origin…that ‘hineni,’ that declaration of readiness no matter what the outcome, that’s a part of everyone’s soul.” There are issues in my life that have been incubating for too long, and I’m finally ready to face them. I feel an urgency, a need – to fully embrace this transitional time in my (OUR) life and emerge from it healthier, and more whole. I’m publicly acknowledging my personal needs, in the event that you might also be at a critical crossroads in your life and be searching for inspiration, as I am. In the words of another artistic genius featured in the article, Tom Waits, “…when dealing with emergent behavior there is nothing to do but respond…it was not the fire I imagined or dreamed of, but it was the fire I got.” I fully believe that the only way out is through – and it doesn’t have to be dark.