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6sept22
I read something recently that equated Labor Day Weekend with New Year. A time when we all collectively re-start. I like that. Today was a shite re-start for me, but I’ll take it. My Dad once said that I stumble and fall often, but I always get back up. I hope that remains true for the remainder of my days. I didn’t want to go to yoga this morning – it was satisfyingly gray and rainy. Bed was wonderfully comfortable. But I dragged myself up, did the requisite getting ready and morning chores (which includes washing all the towels in the house for Towel Tuesday) and managed to get into Husby’s truck just in time to make it to class.
Which I did not do.
I messaged the instructor, I hydro-planed (not related to the message), nearly rear-ended a sedan, got to the studio, grabbed all required accessories (still damp from getting into the truck) and trudged through the rain. It was three minutes past start time, and even though I knocked and waved and tried valiantly to get someone’s attention, I was left outside.
Huge bummer. Because I certainly needed some yoga after a hellish drive.
Got home. Successfully backed the truck into the driveway (not something I either do frequently or enjoy) and got even more soaked as I shlepped my yoga gear back inside with the groceries I’d picked up and two hot drinks from Starbucks.
I was pretty sure I could use the day before me to get things done, but I am an expert at wasting time and getting side-tracked (perhaps my best skill is procrastination haha!). I forced myself onto the bike, lifted (who am I?!?) and went for a walk. And here I am, about an hour from when I want to start making dinner, having accomplished all of NONE of the things I need to get done. I can’t even get a photo to upload properly to this blog. Which is driving me batty.
When I was younger I had a very interesting interaction/communication exchange with my mother’s oldest sister. Thoughts were exchanged. I was shamed. For existing, I believe. If I can recall. I don’t remember all the details (I’m sure she still has the emails so if I truly wanted to know, I guess I could ask … but why I would do that, I certainly don’t know). Anyway. One of the things I do remember was a bit about how I hadn’t earned anything in my life and didn’t understand hard work. I’m not sure how she knew because I’d grown up across an ocean in a country she’d never lived in, but hey ho, at eighteen I didn’t think that rationally. What I heard, and remembered, was that my suffering was not nearly worth giving any time to or recognition of. My suffering was dismissed because of apparent privilege (being American I guess?). Anyway. I never forgot that, that there was a scale of hardship and my life and struggles didn’t rank on it. I bring this up because I am sensitive about ever complaining about how hard things are because in the grand scheme of life, my troubles are not nearly comparable to many, many people in this country and around the world. So being snarky about not understanding website formatting shouldn’t even be mentioned.
On the flip side, does that mean that anything and everything that is hard for me, within the parameters of my life, should be discounted as difficult? I’m not sure. I am certain that my problems are first world, white upper middle class problems — which aren’t usually life-threatening. But sometimes my problems are very real, and very difficult because within the framework of my existence, I am struggling.
MS taught me that.
But this isn’t about MS (despite essentially my entire life being about MS in one way or another). Today was a challenge for me even though that might not actually equate to being hard. And I find myself frustrated, exhausted and overwhelmed with sadness as the minutes slowly click by on this random first Tuesday of September.
I also have to remember that I’m that girl – you know the one. The one in her early forties without kids, in a happy marriage with three cars, two houses and a travel problem. The girl who spends her weekends going on coffeeshop dates in a zippy red sports car convertible and doing home renovations (because she can). It doesn’t really matter that I worked hard to get here; I learned some hard life lessons along the way as well as the painful struggle of an incurable autoimmune disease. The point, I guess, is that even though today was a tough one (for me, which -I think we’ve established- is relative) I still have a husband who loves me, food in the fridge, clothes in the closet, a roof over my head, air-conditioning, heat and health insurance that covers my catheters and my infusions and my migraine meds and my plethora of doctor appts. Sure, I lost my mother and my grandmother (the women who most specifically made me me) and my baby girl earlier this year. But I can still walk. I can buy shoes and jeans and skincare and get my hair done.
I don’t know. I think comparison IS the thief of joy. But how do we stop comparing? How does the cycle end?
A question for another day.
xox, g
3sept22
I should have been in Ireland today, celebrating twenty-five years of my cousin’s marriage. But life didn’t work out that way and we had to cancel flights and rearrange our schedule … and then rearrange it again … and again. And now, I’m spending today alone, sitting on my back deck, reading yoga texts and contemplating taking a shower soon (because I dragged myself to yoga this morning – worth it, always!- and I’m gross and stinky and really need to clean up).
When I left Zavino all those years ago – more than five, whew! – I had no idea what I was going to do. I knew I wanted out of that job and that company, I knew I wanted out of the commute and the stress of restaurants, but I had no idea what else I was qualified to do. That debate quickly took a back seat to spending time with my mother as she battled cancer and eventually succumbed followed by two years of surviving the ever-changing landscape of a global pandemic that metamorphosed into a country massively divided.
But I’m young and I can’t ‘do nothing’ forever. In fact, my body and my brain massively object to doing nothing indefinitely. So earlier this year I endeavored to finish my yoga teacher training. And I’m hoping to be able to teach plus incorporate my life practicing yoga into my new endeavor with Danielle. My brain feels happy – challenged and overwhelmed and blissfully content. It’s funny what direction and purpose can do for a person.
I had this strange moment yesterday while John and I enjoyed a coffee date on our back patio. I thought about how we’re all racing to accomplish something – become someone – make our mark … but to what end? I thought about all the joys of my life, the hard work J+I have put in to crafting this little slice of happiness together, and I thought to myself – I’m ready to just sit back and enjoy it for a bit. Enjoy our homes and our decks and our patios and our cars. Enjoy where we live – Longwood and Marsh Creek and West Chester and State College and Beaver Stadium – and all the trappings that come with this life built in rural pockets of Pennsylvania. I want to just … be. And not feel like I’m racing or completing or rushing or reaching. Because here – where I am – is more than enough.
My younger brother lives in the French Alps. He travels nearly constantly – he summits mountains and ice-climbs and skiis and surfs and white-water rafts and reads loads of books and writes screen-plays and has a million friends who love him. He visits the sets of Scorsese films and hosts epic Halloween parties. He lives life extremely well. And I have moments (more than I’d like to admit but – I believe – understandably so) when I wonder how he lives such a rockstar life, and I sip chai teas in Chester County and shlep into Philadelphia routinely for medicine infusions. How is my life so … boring … compared to his?
It always takes me a beat to remember that my life is actually exactly what I want. Just as his life is exactly what he wants. I don’t want to sleep on a mattress in a van – no matter how cool & adventurous it sounds! – because I like sleeping in my nice bed (or any bed for that matter) and being able to shuffle to the bathroom without getting dressed and putting shoes on. It’s really hard to remember that when the romanticism of his existence tugs so constantly on my soul. I have to begrudgingly remind myself that I am a creature of habit, that I enjoy seeing my baristas at my Starbucks and my yoga friends and teachers and my dad on a regular basis. I like having roots and routine. Those things feed me.
But I was raised by parents who travelled everywhere, and to whom travel and adventure defined success. I know – am more sure than anything – that my Dad loves me, but is he as proud of me and my life as he is of my brother? Maybe. I don’t know. My American father married my British mother. My American brother married his French wife. I married an American man whose young life kept him in a small town in north central Pennsylvania. He didn’t have a passport until after we met (and not because of me – because his job sent him to Costa Rica for long stretches). I think about these things more than I want to because I think being human means being afflicted with some kind of insecurity. Mine is not living up to potential. Not taking advantage of opportunities. Not having purpose.
Heavy. I know.
Anyway! The breeze changed directions and I got a whiff of my stinky self so I am off to shower and do wildly exciting things like balance our check book and rearrange our cleaning supplies and the laundry room. I bet my brother is doing something epic – like watching a famous race or attending a crazy celebration. That’s okay. It’s better than okay. That’s life. And I am grateful for every day.
Xoxo, g
01sept22
It always feels like a relief when September arrives. Even though it’s still blazingly hot and humid. Even though nothing has changed much from August (if you aren’t a parent, which I am not). But it’s the hint of change, the promise of cooler days. The dream.
Yesterday J+I drove up to Mortgage #2 (an affectionate nickname) to receive a refrigerator for the garage. Every part of that sentence is bougie and I know it. I’m pretty bougie (daily yoga at the studio and chai teas and online shopping habits and designer blankets etc etc). But having a second house and now a fourth refrigerator? I’m externally (& internally) rolling my eyes. My biggest frustration today has been trying to scale my photography so this damn blog will upload the files … and yes, I hear myself.
Recently I’ve been thinking a lot about change. Partially because it’s kind of inevitable as the seasons begin to shift. But also because I have been working on this blog and whew – I have changed a lot since I wrote some of my early stuff. I just updated my ‘Curiosity About Me’ page because when I read it, I didn’t even recognize it as myself. Which made my brain begin to whir and spin, contemplating how we all change and evolve (or not!) over time and it isn’t just our hair or our waistline. It’s our values and our day-to-day existence. I changed out the picture of John and I because we look completely different. But I also changed all but one ‘fun fact’ on my list, because I’m not the same person who started this blog in 2011. And I never will be again.
***
Fun fact — all the cells in our body change over every seven years. So every seven years, we are – theoretically but also biologically – completely different people. It’s crazy and wild that we stay in relationships and friendships and jobs and lifestyles for so long – as though longevity and loyalty trump all. Shouldn’t we always be evolving and adjusting our lives to reflect who we are in a given moment? I think so. I mean, I still adore my husband but he’s changed remarkably since we met all those years ago. We’ve just changed and evolved together – as a partnership. We haven’t stayed the same, and neither has our relationship. Which is both the best parts of us and sometimes, some of the worst parts.
I always vow to never become as close-minded or grumpy about new-ness as older generations are and have been toward my generation and the ones that have followed. But perhaps it’s inevitable that there will come a point when I look around and don’t recognize or understand the society ebbing and flowing around me. (Let’s hope not, but I can’t guarantee anything).
About a month ago, one of my closest friends (dare I say best? … I dare) approached me about an idea she’s been working on developing. I’ve shied away from working with her in the past because I don’t want our relationship to become about work and nothing else. I don’t know why but I was skittish that it could irrevocably (& negatively) change our friendship. But then I started thinking about all the people in my life who I love ridiculously and who I met through work. It’s a lot of people. Stretched out over a lot of years. So why wouldn’t I give this fledgling idea a chance – because it’s a really, really good one.
Anyway. That brings me to today – tapping away at this blog and trying to refresh it as best I can in anticipation of what Danielle is cooking up. We’ll see what happens. But I plan on enjoying the ride.
xox, g
24822
Today has been up and down and all around. I left the house early – lots of appointments – and as I drove next to the train tracks I thought about how grateful I am for my life. That despite the hard stuff – health and family and money and blah blah blah – it’s a pretty good one.
And tonight, as I finally sit down to do the pile of things sitting and waiting patiently for me on my desk – I’m fairly certain that my head may explode. Imminently.
I ran out of time again today. It’s time to make dinner and I haven’t done anything I wanted to do. Which isn’t necessarily true – I went to Movement Paradigm and I went to yoga and both of those things feed my soul. But I didn’t get much done towards my meeting tomorrow. And all I want to do right now is make dinner and sink into the couch as the sun sets, watching “Ted Lasso” for the fourth time in a row.
Life is hard. Family is hard. Relationships are hard. I wish we took more responsibility as humans for our part in how life unfolds at our feet. I’m pretty certain that I own most of my shit (although probably not all of it) but the number of people I deal with on a regular basis who seem to think that the world owes them, or someone else will fix their shit … it’s a lot of people and it’s *mind-blowing.*.
I think I am going to go cook. Brown rice and artichokes and some beans and chicken. And watermelon for dessert.
At least I wrote for the first time in weeks – even if it was to complain about life and my terrible attitude.
Argh.
Xox, g
09822
Today is my first foray into the pain medication my new neurologist prescribed for migraines. My last headache was a little less two weeks ago and I knew that yesterday was it’s next scheduled arrival.
I tried to play it cool. Paid close attention to what I ate. Drank a ton of water. Managed to *not* eat peanut butter out of the jar. (Sounds weird, but that’s a true triumph for me). I could feel the signs in my body – the tightness in my left shoulder, radiating up my neck and around my skull. The sensitivity of my skin, the discomfort in my jaw. I felt the acid rise in my stomach, churning and rolling. But the headache pain never came.
I took my preventative pill before bed. I prayed for sleep.
I took my Invisalign out around 3am. I clench my jaw something fierce because of those mouth pieces, and that clenching just feeds into the headache. That still wasn’t there but I could feel it lurking beneath the surface, waiting, waiting ….
When my alarm went off for yoga this morning I knew in every fiber of my body that I didn’t want to go. I was afraid – afraid of the pain I knew was coming. Afraid of the headache that would take residence and not leave for days. I rolled over and waited. I waited but it didn’t come.
I went to class.
There were moments – like waves lapping the shore – when the pain peaked through. As I flowed and sweat and wobbled my way through balancing postures and vinyasas. It was there. I felt a small relief. Because I’d known. All the signs were pointing that way.
So when hubs and I got home, I popped my first pain pill. I’m absolutely terrified. I am afraid of the side effects and I’m afraid it won’t work. I’m afraid the pain will come and it will rage longer and harder than normal, just to let me know that it’s in control, not me. I can feel the tension building in my shoulder, twisting in on itself. I try to breath and relax but relief doesn’t come.
I hope the pill helps.
Xox, g
04822
This morning – for the first time since I began my yoga journey four plus years ago – hubs came to class. He was (at times!) annoyingly good for his first class. I think (hope!) he liked it.
After class I settled into my office to plug away at my open ended list of to-dos and pulled up my teacher training ( I have fallen woefully behind the arbitrary schedule I set for myself but ce la vie, right?). One of the first questions listed to answer was “What do you love about yoga?”
Which strangely, stumped me.
What do I love about yoga? Besides everything, right? Because I can’t seem to get around the fact that I love everything about yoga. I love the breath and I love the sweat. I love the community. I love the poses, the challenges. I love the heat, the thick humidity. I love how sometimes it’s so hard, my brain empties of everything except that exact moment, that exact pose and the sweat dripping off my nose. I love the philosophy and the thoughtfulness. I love the hard questions and the boundaries yoga pushes. I love all eight of it’s glorious limbs, the yamas and the niyamas and the pranayama. I love that yoga expects nothing of me in return and yet, it expects everything. It accepts everything. I love its deep and rich history. I love it all.
So I guess that’s my answer. It doesn’t help me come up with my mission statement or whatever its called – my purpose. But I know in the marrow of my bones that I love yoga indescribably, indiscriminately, wholly and fully.
I hope husby does one day, too.
Xoxo, g
03822
My mind is a jumble today.
I woke up in the darkness of the early morning and fear gripped me. I was paralyzed with worry that another headache was coming. It was funny to have that reaction – not the haha funny obviously but the strange funny – because I hadn’t really realized how afraid I am of the pain until that moment. Or maybe I had full clarity of my own feelings for the first time. I’ve lived with headaches for so long and I think that now that I’m on medicine to help mitigate, I am afraid it won’t work. Sort of like the MS treatments I did for the first two years of my diagnosis that had zero effect.
Being chronically ill is exhausting. I’ve probably written that sentence a million times on this blog. Last night I went back and read some of my earlier posts and I found it both troubling and interesting how the same thoughts and feelings come up again and again. As though I’m trapped in an unending circular maze.
Anyway, I thought maybe I should refocus on something more positive. The things that bring me joy.
I have a friend who is five years into writing her happy thoughts on Facebook and I believe that time spent focusing on finding those little moments is rarely wasted. The energy we send out is the energy we attract.
I love my chai tea. There is comfort and joy and safety and goodness wrapped inextricably in that twenty ounce cup with the green logo that I buy nearly every day (and sometimes twice). I used to say I would quit it one day but now I acknowledge that the pull of that little daily routine is too great and too joyful for me to ever consider eliminating it.
I love when my delivery of catheters arrives. I don’t know that I’ve ever talked about my catheters on this blog or even on social media. It’s a private thing, dealing with the myriad of bodily function issues that come with MS. But I’m ripping that band-aid off because if someone judges me for catheter use then I didn’t really need them in my life in the first place. I get shipments every three months that I have to authorize online two weeks prior and sometimes I skate a very dangerous line of nearly running out before new ones arrive. At my last urologist appointment my doctor increased my prescription so not only did I receive a huge shipment of catheters (which brings with it the knowledge that I can pee comfortably for the foreseeable future) but I got six extra boxes, which is just joy personified for me.
I love when I sleep five hours without interruption. It makes a huge difference in my health and my happiness and it happens rarely, so it is something to be celebrated indeed. A good night of rest for me is two to three hours and then (after a pee break) another five or six solid hours. I’m a whole new person and I am so grateful.
The sleep thing has become a big deal because one of the triggers of my migraines *could* be lack of restorative sleep on a regular basis. As I’m not even a week into my new preventative meds, I don’t know and my new neurologist has just joined the case, but it’s one of the top things he thought could be a trigger. (And I always thought I was a good sleeper … haha, jokes on me!).
Anyway. Tomorrow will mark one week on headache medicine. I haven’t had a headache but that doesn’t mean much at this point. I don’t feel any different so I am deeply worried. Probably what woke me in a panic in the middle of the night.
Living in fear is pretty tiring. Kinda like MS. Meh.
That’s why it’s important – every once in awhile – to stop and smell the roses. (Or the chai tea 😁).
Xox, g
02822
It’s Day something-or-other of migraine meds and so far, not so bad. I haven’t experienced any specific side effects that I’m worried about. I don’t love taking medicine (especially the kind that has warnings about stopping usage) but I am also so desperate to slow down the onslaught of pain that some of my morals and values get blurry. I don’t love that, but that’s where I’m at.
I take medicine (aka get an infusion) for my MS. I guess it’s only logical and inevitable that I will be on meds to help curb my migraines as well. Despite working hard to keep my body as healthy as possible.
On a different note, had a lunch meeting today about an exciting prospect. I don’t want to talk too much about it until a little more time has been invested, but I feel good about something for the first time in what feels like forever. And that’s sort of miraculous.
Anyway. I made it through another day. I even managed to eat fairly well (despite two chais). It’s always a work in progress. But it feels okay today.
Xox, g
29722
Yesterday was a long day and I thought about blogging (I think about a lot of things 🤪) but by the end of the night – after our day took several sharp left turns – I crawled into bed, hoping for sleep and not much else.
Last night was my first night of migraine medication. I have spent years trying to avoid medicine but my life has been eaten away by the pain and the inability to function clearly so when an option was offered to perhaps prevent the pain, I took it and didn’t hesitate.
I don’t like pharmaceutical drugs (not even recreationally- actually, especially not recreationally) but there comes a moment when there doesn’t seem to be any other option. I’ve discussed my headaches with my MS neurologist, my functional medical practitioners, my chiropractor … basically everyone. And while everyone (minus my neuro) is all for holistic healing, no one has offered me any solutions that actually work.
It’s hard to explain the debilitating nature of pain unless you’ve experienced it, and the average Joe has not experienced sustained, untreatable pain for any length of time that would allow grace and understanding. Or the painful choice to take drugs despite every fiber of my being hating the idea.
Side effects are drowsiness (no prob, I have MS and am tired constantly!) and blurred vision (ummmm…not as great considering I just had laser eye surgery last year ….). I think blood pressure as well, but that could be the pain meds he prescribed for the inevitable headache that will come.
Anyway. I have mixed feelings about western medicine and patient care (I mean, there is no real patient care – there is drug prescribing and rushing through symptoms and not acknowledging that it’s a person sitting there in the form of me … but I digress). I told my physical therapist about it this morning and she offered an alternative treatment so I’m going to try it (but I’m not ready to give up the drugs yet … the pain is truly unbearable). I guess I feel optimistic that my headaches are being addressed. I’m hoping I can begin to feel better consistently and have a normal, functioning life. (Y’know, for someone with MS).
That’s the update. Today is Day #2 of drugs. John is at the farm all weekend. There is no Lucy so … it’s just me. And yoga.
Xox, g
27722
I always start the year off strong and then sometime in March completely fall off the wagon. It’s sort of like my meditation practice. When I’m in a groove, it’s excellent. But it’s so easy to fall out of the groove. And then realize I haven’t blogged in nearly four months.
Tomorrow I have an appointment with a headache specialist. I have been tracking my headaches for about a year and a half and they occur much too frequently and are far too debilitating to continue to ignore them. Once upon a time — a nearly forgotten time — I did not get headaches every other week that took me out for three days. But here I am now, hoping that tomorrow is the beginning of a solution.
I think I’ve figured some things out but then something happens and I’m lost again, searching in vain for commonalities or some kind of fixable situation that can be addressed. Hormones, infusions … nothing is the same each time. It’s maddening.
Anyway. I thought I’d come back here to blog. To hold me accountable, sure, but also to document this journey from the semi-beginning.
For the record, as usual, I feel like shit. Not just physically (that’s kind of a given especially since I am coming off another headache) but mentally and emotionally. I’m angry, frustrated and feeling impotent in the large machine of western medicine. My right leg hurts through its numbness – something nearly unbearable. My hip sears in pain like the sizzling of meat on a grill. My left shoulder aches and throbs, sending me messages I cannot interpret. My right ankle drops, tries to lift, and drops again. The numbness burns. I want to cry. I am resentful of everything MS has taken, resentful of how much more I will have to set down along the way.
Tomorrow begins another quest for wellness. Another walk down the de-humanizing hallway of neuroscience. I know that I have to make changes – diet changes and exercise changes. Life changes. I’m angry about that. But anger doesn’t change the facts.
Either I change or I continue to decline. There are no other choices.
Xoxo, g
D5 Creation