in my head, i’m constantly misappropriating newton’s third law of motion (to every action there is always an equal and opposite reaction) and applying it to my daily give and take. yesterday i went hard. i had to. today just is hard.  subsequently, brooklyn we go hard has been on my mental repeat and it makes me miss, well, brooklyn.

to put you on my page, i’m on day two of cold, heavy rain and it’s deep in my bones by now. there are some mornings that i’m in so much pain lying down that i can’t imagine trying to get up. usually, i remind myself that staying in bed makes all the aches worse, but i’m beyond reluctant to actually swing my legs over the side of the bed, put my feet on the ground and make the decision to be in the day. i’ve been steady juicing, as in making fresh vegetable juices, not taking steroids (though i can’t seem to lower my dose of prednisone, so i suppose “steady juicing” applies all around.) for the past week. in general, i eat incredibly well/healthily, but i can’t seem to find my appetite today. my brain feels scattered in a thousand tiny pieces and my desire to put coherent thoughts on the screen seems to be outweighed by my inability to hold onto a thought long enough to type it. i don’t even have the attention span for a half-hour tv show. i’m having a surge of typical lyme/babesia/bartonella symptoms: sore ribs, eye pains, fatigue, myalgia, joint pain, stiff neck and back, ear aches, tinnitus, tooth/jaw pain, breast pain (how i imagine i would feel if i had the unfortunate experience of actually being stabbed in the breast), swollen lymph nodes in my neck and underarms, shooting pains, bruising, bartonella rashes and small pinprick red dots on my thighs, calves, back and ribs, and a sore throat. on the plus side, i can breathe. i’m not being facetious here. lordess, i do love it when i can breathe without pain.

for the most part, focusing on the bad/painful/negative/uncomfortable stuff actually exacerbates it. for this reason, in addition to not wanting to sound like debbie downer, i try to steer away from kvetching. i’m not writing this poor-me list for the sake of simple bitching. in order to believe that i really had chronic lyme, i needed to read about the daily realities of other diagnosed patients. i had to identify with the myriad of maladies they experienced. i had to learn that ten years of swollen lymph nodes behind my ears was not actually a manifestation of my autoimmune diseases. almost every symptom i listed in the above paragraph, i told all of my doctors about. with the exception of my functional rheumatologist, my osteopath and my general practitioner, my dozens of doctors either ignored my complaints or told me to talk to my psychiatrist about them. when the nurse or doctor leaves the room, i paw through my medical files. time after time, i read words like “somatization” used to describe the very real and very debilitating problems i was having. after years of saying the same thing without being heard or believed or properly diagnosed, after a decade of being told that these symptoms are either a manifestation of my craziness or my inability to process childhood trauma, it’s 100% necessary for me to list them- without shame and the haunting accusation that i am inflicting this pain on myself. so i’m writing this down for me and for anyone else who is experiencing this (oh, and click the “somatization” link. the list of symptoms that can occur with a somatization disorder reads like a lyme disease checklist.).

i started using an iphone app called ilog lyme to track my symptoms. my brother and i have been talking about how i need a… can’t think of the word… uh… a program that i can simply input my symptoms on a daily basis, something where i can just check a box. “yes, i’m having chest pains.” “no, i’m not having chest pains.” overtime, i would be able to see patterns, make associations, and draw some relational conclusions. i try to keep records of my symptoms, but they’re individually entered into a calendar, which isn’t the easiest thing to pull data from. so it occurred to me that there’s an app for everything and that someone probably made one for lyme. ilog lyme costs about $2 and gives a wide range of physical and psychological systems to report on. these logs can then be emailed on a weekly or monthly basis. there are a number of things missing from this app, like the ability to add in additional symptoms, but having a record is better than not. maybe someday i’ll be able to pull it together long enough to make my own ____________ (insert word i can’t remember).

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