“But you don’t look sick.”
It’s one of the most irritating things to say to someone dealing with a chronic illness. I only hear this on my good days – the few good days I have each month. When I am out, have washed my hair and applied makeup, am social and having fun…
<welcome to my dark place…>
What you don’t see are most nights typing this blog at 3am, then finishing and switching to folding laundry and watching Netflix until 5am. I haven’t owned a television since 2011 and was never much of a TV watcher. Over the past 2 years I’ve more than made up for that. And you know what’s scary?? I LOVE it! I love watching TV! I’d rather just sit on the couch with my boyfriend and binge watch Gran Hotel or House of Cards instead of going dancing. Yes, yes I know that sounds lame. But my body has stopped producing dopamine so what do you expect me to do?
Currently my sleep schedule is 5-8am. Why 8am? Who knows. Bodies are weird. Especially mine.
I gave myself a pedicure last night at 2am. Why? Because I knew I’d have plenty of time for it to dry before I went to sleep.
But my world isn’t all glamorous toes. I stay in bed most days, coked out on Xanax and haunted by medication-induced nightmares where I wake up crying. Those nightmares…they stay with me for days. It’s unsettling. Black circles under my eyes, lethargy so intense I don’t bother to shower or get dressed.
You don’t see how I feel like a complete loser every day for not being able to work, and the daily internal battle that comes with being dependent on so many people in order to function.
I realize my need to justify and explain all of this just points back to my own insecurities about where I am, as well as my lack of acceptance of my situation. People are a mirror, yadda yadda yadda…so obviously this is a major trigger point and something I
need want to work on. This is my issue, not yours. I get that. I’d really love to get to the place where someone <harmlessly> makes that comment and I just reply with a neutral “thanks”. Because “not looking sick” is always a compliment. But for now, I still feel this nagging need to explain how things really are. So, I’ll work on that. <gentleman’s agreement>
Here’s my update from my follow up with Dr. Ginsberg:
Thyroid – check.
Cholesterol – 252 (high is 220)
cholesterol is needed to deliver hormones (fail) and decrease inflammation (double fail)
Trigylcerides – 200 (high is 100)
typically a result of a high-sugar diet.
these numbers are something you would see in an obese person. obese, people! something is seriously fecked. ginsberg suspects that my liver is producing cholesterol in an attempt to fight inflammation, which isn’t working, so it keeps producing more, and it has turned into a viscous cycle (see what i did there?). she didn’t seemed too concerned about it.
Pregnenolone – 12 (normal is 100’s)
this is the “mother hormone” needed to make all other sex hormones. a 12 is what an 80 year old woman would have.
Homozygous A1298C MTHFR mutation (double mutation)
this little fecker has been silently ruining my life for the past 33 years. it has to do with methylation. what is methylation? i didn’t know either. but google and my doctors told me its an enzyme to help your body convert stuff (think b vitamin krebs cycle). since mine is a double mutation, my body is functioning at less than 60% of yours on a good day. it also means low dopamine and inability to detox. BFD.
B vitamins – critically low
turns out these guys are pretty important. help liver detox, convert food into energy, and have a starring role in the Krebs cycle. dr. Ginsberg kept stressing how bad it was that my body was not producing the b’s. also play a huge role in converting excitatory neurotransmitters into inhibitory, which makes you sleep. mmhmmm….
3 days of doing what no human should ever have to do with their own feces revealed I’m not making any pancreatic elastase. that means my food isn’t getting absorbed. pretty much just an in and out agreement we have at the moment.
Short assessment: body is in a hyper-inflammatory state, and shit is shutting down because of it.
Game plan is to load me with b vitamins, digestive enzymes, and pre/probiotics to get my gut absorbing food. Also no alcohol, dairy, gluten or sugar for the next 6 weeks to get inflammation down. I see them after 6 weeks to reassess.
in the past 2 weeks, i’ve attended 3 parties without being able to drink wine. (one of those was a pity party.)
Future game plan will be discussing switching birth control from oral contraceptive to nuva ring, which doesn’t go through the liver. OR….(drum roll)….getting off bc entirely. WHAT?!?!?! *screeeeeeech halt. Yes. Ginsberg thinks the endo developed due to me being estrogen dominant. If she can balance me, then the endo will rest quietly with a “do not disturb” sign on my uterus. But we aren’t even touching that right now, and ultimately I will stay on the bc if that is what I think is best for my body. But I’m open to there being other possibilities.
Erin, as long as you are loving TV, watch “Orphan Black”! BBC America. It’s brilliant & the actor playing Felix is so gorgeous. I love you, babe. Think about you all the time. And, always thoroughly read your words.
Just watched the first episode last night – it’s so good!!! Thanks for the rec…and thanks for always reading my posts. Mountains of love to you too xxx
Hey there! I randomly ran across your blog while researching stuff on Dr. Mangal. I’m going through kind of the same thing you did with him (had a lap a couple months ago and am scheduled for a laparotomy at the end of July since my endo is so severe). i would love it if you could email me when you get a chance, I’d love to pick your brain about some of this stuff!! 🙂 Thanks!!