Blog: Not Like The Whiskey

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Netflix and Hill: The True Story Behind “Afflicted”
The Time I Bought a $2,000 Coffee Mug
My Modern Love Essay is in The New York Times
The Aftermath of Afflicted

After 60 hours without power or running water, I’m happy to report that things are getting back to how they were. And now I have some snow to play with. ⁣ ⁣ It was tough being without power and water. It felt like something from a bygone time. I don’t think I’ve had to live this much off the grid since I was a kid. The most fascinating part of it all was that while there was no running water for a bath or electricity for the heater, I was still able to charge my phone from a backup battery and a laptop. So it was this weird mixture of living off the grid while using technology that was still very much on the grid. It was a trip, but I’m glad it’s over. At least for a couple days (it’s supposed to snow more this weekend). ⁣ But, until then . . . SNOWBALL FIGHT!

A bunch of thoughtful folks have been asking for updates on my health. I wish I had some breakthroughs to share with y’all. I do have some promising news, though. ⁣ ⁣ Last week I had a conference call with two doctors (one is a specialist, the other is my local GP who basically follows the specialist’s advice and prescribes the treatments). ⁣ ⁣ It was probably the most chaotic call I’ve ever been on. I wasn’t able to talk loud enough for anyone to hear me, so my mom had to speak for me. Then one of the doctors was actually running to catch a train while talking to us, and the other doctor was driving. In the middle of everything I was trying to record the call so I could reference the things we talked about later on (I highly recommend this when you have a conversation with a doctor.) Oh, and there was a nurse also on the call taking notes for one of the doctors. Everyone on the call was on a different phone, too. It was nuts. ⁣ But, believe it or not, I think it was worth the money. We decided I’m going to try Low Dose Immunotherapy for #LymeDisease and possibly the active viruses I have (CMV and EBV). I’ll also probably start taking a second anti viral, probably Famvir in addition to Valcyte. ⁣ ⁣ The specialist suggested I try Viread, which I know next to nothing about, except that it’s an anti retrovirus drug. So I’ll have to look into that. But overall, things are moving along — I’m sitting up and talking more, and it feels good to have some new treatments to try. Though, I’m always worried about bad reactions. I’m just not gonna think about that and hope for the best. ⁣ ⁣ Oh, and lastly, yes that’s a pumpkin in the photo. This is the view right outside my room. Last year we got pumpkins at Halloween and left them outside to see how long they would last without rotting. They made it almost a year 😮 (definitely some weird GMO stuff going on in those pumpkins). The little one on the railing in this photo is still going strong, but we’ll see how long it lasts. So grateful for the view as well!⁣ ⁣ #autoimmunedisease #spoonie #chronicillness #mecfs #invisibleillness #dysautonomia #disabled #disability #views

I’m one of those weird people who leaves the door and windows open during storms. I love to hear the sounds — the rain and wind and thunder. I like to feel like I’m actually in the storm, opposed to under shelter. I’m sure it’s a metaphor for something in my life, or perhaps a direct result of experiences I’ve had. But I’d rather not analyze it — I just wanna enjoy the free entertainment outside my door. ⁣ ⁣ #invisibleillness #writing #mecfs #chronicillness #lymedisease #spoonie #dysautonomia #reading #storm #rain #clouds #fog

I haven’t worn shoes in 4 years, and I’m not entirely sure what shoe size I wear anymore, but at least I can still wear some comfy ass socks (Thanks @lymelessandlovely). ⁣ ⁣ These days are my favorite — little bit of rain, lotta bit of clouds. When it’s sunny outside the light is too bright for me to open my drapes and doors until it’s basically dusk. But on rainy, cloudy days I can open them as soon as I wake up and enjoy looking outside for the entire day. It’s the little things that matter the most sometimes. ⁣ ⁣ #mecfs #lymediseaseawareness #invisibleillness #spoonie #outdoors #lymedisease #chronicillness #chronicpain #forest #trees #rain

Tweets

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