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10222
Today was one of those days that ended up feeling like a hangover from the past few days.
I think adrenaline got me through most of yesterday – just the uncertainty and having to be ‘on’ all the time. And then today dawned and my body told me – quite firmly – not today.
Which I completely ignored because I had plans.
It ended up being a good day – good lunch, good conversation. I even had a decent workout (until the last five minutes when my legs were just d-o-n-e).
As I was falling asleep I remembered I hadn’t blogged. And I knew I couldn’t fall asleep having remembered. So up I got, eyes full of ointment, hands in gloves and slathered with Aquafor. It made me think of a conversation I had yesterday about my skin.
I’ve always been kind of a skincare nut. My mother was a nut, my grandmother was a nut, my aunt is a nut. It’s a nighttime (day time/all the time) ritual that I find comfort in, relaxation. But as I told my mother-in-law yesterday, my skin isn’t just a result of skincare. And it doesn’t happen overnight.
Most things in life – like my skin, or my legs, or my hair or anything really – are the result of putting in the time and working toward a goal (or a standard, depending on what it is). My skin is about what I eat, how much water I drink, how much sleep I get, how I deal with stress, etc etc. And people can use all the same products I use but their skin won’t look like mine — because it isn’t just the moisturizers and the exfoliators and the serums. It’s everything. Consistently.
Like my eye drops to keep my eyes lubricated. And gloves and aquafor to keep my hands moisturized. It’s about consistency. Not losing sight of the reasons for doing it in the first place.
I’m rambling because I’m tired but I think there’s a point in there somewhere.
Off to get my eight hours.
Xox, g
05222
There are so many things no one tells you.
As though it’s a rite of passage to learn difficult lessons. As though we all should feel lost, afraid, angry and alone at multiple times in life for multiple reasons, and no one is compelled to help us out.
Like how life can feel happy and settled and you can feel blessed and lucky and so overwhelmingly content and then a wrecking ball blasts through your whole world, taking no prisoners, leaving havoc in its wake.
Like how you think you’ve worked out all the kinks, done all the growing and learning and accepting but then still be knocked over by a feather. A tiny, inconsequential moment that would otherwise be forgotten before it’s even acknowledged …. But this particular feather dismantles your carefully built life with a swirl.
I’m having a day and I’m feeling painfully alone.
And I know I will survive. I will move through this as I’ve moved through all the obstacles I’ve faced to this point. But I know it will hurt. And I know things will be irreparably changed. And that knowledge hurts almost as much as the obstacle.
Xox, g
04222
I did a series of social posts today because – as usual – I had trouble sleeping last night and I occupied my mind by planning my outfit.
Medicine Day clothing is tricky, because it has to be super functional in a number of key situations (vein access, rest room usage, etc). But I don’t like repeating outfits two months in a row, and I don’t like looking a hot mess.
Mostly because when you go to the hospital to get an infusion for an autoimmune disease, you’re treated like you’re a hot mess, have no brain and possibly can’t speak (among other, de-humanizing things). So I like to look sharp, so that I am taken seriously. It’s my hope, at least.
Anyway. Thought I’d share them here. Because A. My outfit was in fact, on point. And B. It’s good info for future use.
Final pic is my workout. The longer I’m on Tysabri (at the start of my eighth year currently) the more tired I get on infusion days. And working out actually helps clear my brain. But getting motivated to work out is a challenge. I managed to do it today. I hit 1k rides on the Peloton.
Not so bad.
Xoxo, g
03222
At dinner this evening I stated to husband that I was no longer going to make any New Years Eve resolutions. I’m not sure where it came from but it came tumbling out of my mouth confidently and assuredly. Somewhere, during the course of this day – this random, not totally inconsequential day— I finally knew.
I knew that I needed until February to understand what my goals for the year were. Too much happens in December — my birthday, lots of other birthdays (Jesus, for the believers!). The anniversary of the loss of my mother. Too many things to have any additional time to contemplate changes for the new year. If I wanted to do that in a timely fashion, I’d have to make the decisions in October or November. And I certainly couldn’t make those kinds of new year, new you decisions months in advance. Too much changes.
I decided – and then articulated – that I needed January to get my bearings for the new year. I needed January to decompress and get back into a rhythm. Get a feeling for where the next twelve months were leading me. I decided that January will serve as my ‘pause’ moving forward. January will be the moment when I catch my breath.
And so, as February dawns and we get into 2022 in earnest, I can more clearly see what I want to focus on, and what my goals are. Some things I try to do every year – read more, watch less TV (this resolution has taken years to make an impact, but I do actually read more and watch much less TV so I guess… worth it? 🤷🏻♀️). I usually hope I meditate more and practice the piano. Still working on consistency there.
But February brings with it clarity. It allows me to take stock of how far I’ve come, and how far I still have to go.
I’m not saying that husby and I are going to start Cross Fit tomorrow (or ever really; husby is deeply skeptical). And I’m not saying that my grand idea of a letter writing campaign will ever take flight. But I do want to lift more instead of only doing cardio. And I want to give my friendships the focus and attention and time they deserve. Life is short, and I want the people who matter to me to know they matter.
Anyway. Small goals. We’ll see how I’m feeling at the start of March.
Xox, g
01222
Another month.
Time is crazy to me. Sometimes I’ll stop and wonder where I am, as though the wheel is spinning and I’m just skipping around, not having landed yet. It’s disorienting and I reach out, trying to find my roots.
LIke – how did we buy a second house only three months ago? Was it really only three months? I mean, it’s February 1st and we bought the house at the end of October … so that’s five calendar months, but only three full months since we did that thing. It’s insane to me.
And on Friday we head back to the city for medicine. It feels like forever since we were last there … but it was only four weeks. This will be my second infusion of 2022 … craziness. (Plus side, I’ve almost hit my insurance deductible and things will start costing zero dollars soon! Benefit of being a sick person, I guess? Hitting those thresholds early on).
When I am tired or I have a headache (regularly occurring things) time stops existing. Everything is paused. Tasks that would take five minutes get kicked down the road. Everything feels overwhelming. I’m grasping for time to steady myself and also wishing it to pass and finally reach the end of the searing pain.
I’ve gotten good at existing within the pain – at getting life things done. But by the end of the three days (that’s the typical length) I’m so exhausted from enduring the pain – from smiling – that it takes another couple days to recoup.
I’m tired of apologizing and explaining. I’m tired of feeling bad that I can’t just exist as a regular person. I’m tired of all the pressure and judgement I put on myself. Because even if it is other people, the only judgement I really feel is the judgement coming from within.
Fucked up, right? Yeah, it’s a side effect of having an invisible illness.
Xox, g
31122
As I’ve written about in the past, the new year always finds me searching to grow, to molt my old skin and start anew. Often it comes in the form of “self-help” books, philosophy, yoga … Anything that pushes me out of my comfort zone and forces me to expand my mind (& in turn, how I think about things).
Sometimes I could talk about this for hours, but this year feels different – like I’ve molted a layer deeper, and am learning to stop and contemplate before speaking. I’m currently reading “Quit Like a Woman” (among other titles, but this currently & primarily) and what I am loving and finding so fascinating is that it isn’t really about quitting at all. It’s about learning to heal, learning to find grounding and truth and love. (I’m only halfway through so I reserve the right to be wrong about this! But it’s my impression thus far).
It’s definitely educating, and I’ve learned a lot about alcohol, its place in our society, its marketing plus its place and eminence throughout history. But mostly, as the book turned its first corner, I began to learn to see in myself the strength and the curiosity I have needed and called upon to begin to heal myself.
**
Tonight, as we watched the first press conference with the NY Giants newly appointed head coach Brian Daboll, I heard in his words some of the things I’ve begun to learn about truth and humanity. Brian Daboll, as journalists ranging from professional and polite to downright snarky asked some truly leading questions, maintained his message. And his message was simple — it’s about relationships, a shared vision, communication and authenticity.
These are not revolutionary themes. They are timeless. I felt a kinship to Mr. Daboll and he earned a ton of my respect for his openness, his honestly and his commitment to his message.
I love these moments, when things in my life dovetail together – when for a moment I glimpse the bigger, connected, energetic picture.
Xox, g
29jan22
As of today, I haven’t had an alcoholic drink in 775 days.
There’s a time in my life when I would find that absolutely insane. I worked in the restaurant industry, I was of Italian descent — wine was in my blood.
But the older I got, and the more disenchanted I became with how alcohol made me feel (honestly, this was a journey with John, so how it made us feel) the less I wanted to drink it. We’d do sober months, give up drinking for Lent … all kinds of things that allowed us to not drink, but also didn’t make anyone else feel uncomfortable about our non-drinking.
I don’t remember exactly what the final straw was, but we both gave up drinking one September. And then a few months later I broke and had a glass of wine while out at dinner with my Dad on a football weekend. I didn’t like that it seemed to make him uncomfortable that we weren’t drinking and I’m nothing if not a Daddy’s girl. Besides, I loved wine.
I had one glass and felt awful. Not mentally, but physically awful. After one glass. One harmless glass of wine.
It was about six weeks later that I once again hung up my drinking glasses (or whatever the appropriate object would be in this metaphor) for good. I stopped drinking full stop four days after my fortieth birthday.
It’s funny to walk through life as a non-drinker but not an alcoholic. It triggers people, leads to some awkward and uncomfortable conversations and forever changes relationships. I had girlfriends who made wild and hilarious proclamations about their drinking – to illustrate their superiority to me? To justify their clearly unhealthy relationship to alcohol? I don’t know.
My choice to be a non-drinker doesn’t have anything to do with anyone but myself. I feel better. My life is better. I also don’t judge anyone else. Everyone can and should make their own life choices, and we are taught young and it is reinforced often, that drinking responsibility is an integral part of life. Of adulting.
Right now I’m reading “Quit Like a Woman” by Holly Whitaker. It’s amazingly informative. So perhaps expect blog posts about not drinking until I finish. 😊
xox, g
28jan22
Today was the last weekday of John’s annual ‘half’ – and because his company does quotas and such in six month increments, it was the last day of crunch time to get deals in to hit sales goals. I’ve learned an enormous amount about corporate America and sales from listening to John talk about work. It’s all fascinating but I am also glad to not be in the rat race anymore.
On the plus side, John hit the goals he wanted to hit yesterday, so today was just icing on the cake. He’s had a really good run since about late May, and we’ve been very lucky. I’ve been supremely lucky because for the first time since I stopped working, I haven’t felt any pressure or need to go back and earn a paycheck. That’s a huge stress relief for a woman with an autoimmune disease that’s triggered by inflammation brought on by stress.
It also began snowing this morning and has continued throughout the day into the evening. It’s beautiful, soft falling snow. Keeping life quiet, but not panicked by massive accumulation. Even the grocery store wasn’t a hot mess when I stopped to get Starbucks this morning.
Today felt calm and cozy. We raised the thermostat two degrees because things just weren’t warming up (even with some space heaters) and now the house feels so warm it makes me constantly want to fall asleep. Haha!
Life feels strangely okay – not the okay you say through a strained smile, but the actual okay of feeling secure and at ease. I don’t trust it – I’ve had too many body swerve moments to feel safe. But just to have this moment – it is a gift.
Xox, g
27jan22
I drove to a breakfast with some lady friends this morning and the beauty of the sun shining through frosted tree branches took my breath away. It made me stop and consider how much beauty exists in the small moments of life.
I guess beauty shows up in different ways to different people. To me, it was the pale corn yellow of a winter sun and the sparkling of ice, it was the warmth of my steering wheel and the sound of the music playing in my car, snaking its way into my heart and the tap tap tap of my fingers. It was the hug of greeting from my friends, the conversations we shared. It was the first sip of my chai and the comfort of my couch and blankets when I arrived home, the fatigue pulsing so deeply it was in my bones.
Beauty was the nudging of Lucy’s nose, her head rubbing softly on my legs to make sure I was okay, to tell me she loved me. It was dancing candles in the early darkness of a winter night, shared popcorn and a movie with my love, cake pops and frizzy water and end of night walks around the curved neighborhood sidewalks.
Beauty was everywhere for me today. It emanated from my life, from the love of my friends and the love of my family and the deep, indescribable love of my husband and my puppy. Beauty triumphed today in the winter sunshine.
Xox, g
24jan22
I made an unspoken deal with myself this year. I said, ‘Self, let’s try to blog every day again. But let’s not talk incessantly about how tired you are. Let’s just agree that being exhausted is status quo and therefore unnecessary to pontificate on.”
Whether it seems obvious or not, I have actually tried not to blog about headaches and fatigue and all the things that are part of my daily life. I have tried – with varying degrees of success – to blog about my thoughts or other, possibly more interesting, things.
I am tired tonight. The kind of tired that starts with a burn in my shoulder and progresses to bone deep cold and culminates in brain fog and the loss of any sense of balance. I’m just reaching out for something to hold onto to keep me upright.
I meant to blog earlier today (as I often do) but life happened – family drama and bookkeeping and laundry and dinner. You know the things – the things that have to be done but take up time and energy. The latter of which is in very short supply for me.
Anyway. My hope is that I read this blog post tomorrow and it makes some sort of sense. Right now, I’m going to put on pajamas and climb under multiple blankets next to a space heater and hope to stop shivering and fall asleep.
Xox, g
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