Tag: Pain

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Travel

Day 1032 and Schengen

Regional airplane travel in Europe remains the worst thing in the world. After the quietly luxurious experience of the ferry to Helsinki, a wildly oversold regional Bombardier jet feels like triple the stress and none of the joy.

I’m just hoping that my triple failure mode method of packing will see me through. I had a flight attendant make a grab at my carry on bag on my flight from Tallinn to Copenhagen for a gate check. I didn’t succeed but thankfully it made it to Denmark.

On the next leg, Copenhagen to Amsterdam, the flight was oversold. Despite a $150 payment to take a flight to Brussels and then a free train ticket, there were no takers. So now I’m watching folks fight over the overhead storage. Luckily I was at the front of the line so missed most of the ugly skirmishes between bad packers and overly entitled travelers.

I’m excited for my week in Amsterdam. Spending an afternoon getting from one puddle jumper to another will be worth it. Even if the entire travel experience is the same old annoyances.

Categories
Emotional Work

Day 1016 and Carrying On

It’s been a terrible week. I feel stupid even typing it. How many times can I state the obvious? It’s as if the repetition of stating that I’m in a hard place physically, and emotionally, somehow shames me. Can’t I say or feel something new?

But I don’t have any desire to dig any deeper into the wounds of the present. I am in too much pain. I am deeply emotionally affected by the situation in Israel. In ways I frankly didn’t anticipate. Those horrors overlapping with being sick, being far from home, and having a significant personal milestone, have collectively laid me flat.

I’d prefer to remain silent but the exercise of daily writing pulls at my habits no matter the extent of the misery. And maybe that’s the point. No microcosm of personal suffering or global macro view of atrocity changes the reality. Pain is an equally shared human condition. And we walk through it no matter our circumstances.

I have to assume I am not alone. The ambient misery is both personal and collective. The human experience is terrifyingly universal. I am fearful of my own physical fragility when abroad certainly but it’s bigger than being away from home. I’m afraid of being fragile in a cruel world that is getting crueler.

I’ve struggled to maintain a level head and a healthy routine this week as the whiplash of a hostile immune reaction and steroids took me from one misery to another. Prednisone is a cruel drug. It tamps down any reaction from your immune system. It’s a hard reboot for a physical system gone haywire. How appropriate given the circumstances.

It wasn’t quite how I envisioned turning over from one decade to another. And while I appreciated the stormy Baltic solitude to savor the weight and significance of my personal milestone, I can’t help but also notice that carrying on feels like a heavy burden.

Categories
Emotional Work Travel

Day 1014 and Choices

I’m sick. I’m in a foreign country. I feel fragile. The way life, and history, keeps progressing it’s not surprising that I feel fragile, sad, and wistful.

It’s my birthday today. I’ve been looking forward to the new decade all year if I’m honest. The final official marker of middle age is now mine. The childhood yearning to be an adult is now finally satisfied. There is no youth left for me. Only the joyful responsibility of shouldering my burdens.

I’ve never been good at making the safe choices in life. I make choices that are driven by my desire to live a life that makes sense to me. Those choices don’t always make sense to others. I take risks. I suffer their consequences. I pick myself up off the floor. I start over. My regrets are few and my experiences varied and colorful.

I feel proud of where I am in my life. I’ve failed in ways both significant and silly. Any success I’ve had were paid in full by my failures.

I am trembling between excitement and exhaustion at the prospect of the next decade of my life. I have personal and professional goals that are risky. Unlikely even. But I feel as if I must take this new decade upon me with as much energy and momentum as I can muster.

If I do not speed up, then the friction of the world will slow me down. My life is filled with friction. I know the pain of a chronic disease and the curse of Cassandra.

But these are motivating factors for me. I see these risks as worth taking for an interesting life. I hope my next decade is as interesting as my last. And I intend to make the choices required to bring about that outcome.

Categories
Emotional Work Travel

Day 1013 and Fragile

I feel awful. I’m having some kind of serious histamine reaction and the cascade of stress and secondary symptoms have been extremely hard to cope with. I do not feel well physically.

I dislike feeling fragile when the wider world feels like it’s in utter chaos. You’d think I’d be used to it. I’ve staked my reputation on increasing volatility.

It’s simply frightening to feel fragile physically and emotionally at the same time while so far from home. As much as I love Tallinn it is a place that is not my home. It takes extra energy to navigate a new place. I love it but it does drain me.

I hope with rest and taking things slowly I can help myself navigate through the fragility. All types of things contribute to making you feel safe. Sleeping a little bit more. Eating nutritious food. Meditating and breathing exercises. Maintaining a healthy routine is the luxury we cannot forgo when faced with crisis.

I hope I’m taking care of myself well. Seeing the fragility and accepting it reminds me to do what is necessary so I can keep going no matter the stress.

Categories
Biohacking Medical

Day 1003 and Externalizing

My body gave me a bit of a surprise on the road. I keep a close eye on my inflammation as it’s the first trigger in my autoimmune condition. Generally it manifests internally as swelling in my spine or joints. But it didn’t always. My inflammation used to manifest externally on my skin.

I woke up today in Tallinn without my typical spinal pain but covered in red welts. If I had to guess, some change in climate, pollution, or weather was the culprit. Stress is stress and you can’t always predict how it manifests. I’m so used my body being in pain I’d forgotten that sometimes symptoms can just as easily manifest on the outside as the inside.

It takes an entirely separate set of medications to manage inflammation on my skin as it does to manage inflammation my joints and spinal column which is a bit of a pain in the ass. I am much more eager to treat it. Maybe it’s easier tolerate being in pain than being red and itchy. You’d think it would be the other way around.

Given that my body feels a bit stressed I’ll keep this short today. Hopefully the manifestations of inflammation calm themselves down and I won’t be dealing with either tomorrow.

Categories
Emotional Work Politics

Day 984 and Distrust

I had a bad migraine over the weekend that simply took up all the space in my mind and body. I woke up with a break in the pain and a deep urge to throw myself into something that felt like momentum.

I found myself awash in sadness. I couldn’t stop myself from crying. It was as if my entire body felt despair. I’ve come to accept the value in embracing emotions as they come. “The only way out is through.”

I trust that my nervous system knows as much as my cognitive mind. I go so far as to say it knows more but that sounds a little woo to folks. And so I listened to my sadness. I cried. I rambled at the many problems large and small facing my corner of the universe.

The distrust I have for our elders who twenty two years ago used today as a catalyst for sending us down an inexorable path of death and fraud. I cried over petty inconveniences like the broken visa system keeping people I care about outside of America.

It’s hard to understand how we came to this point across a generation. But easy to see why millennials are unsure if any of our institutions can be trusted. And I wonder what it’s like to have no memory of a time before 9/11.

Categories
Medical

Day 983 and Down For The Count

I have been felled by a migraine today. I’ve been unable to tolerate light, noise or food for a little under twenty four hours. Probably one of the worst migraines I’ve ever had but my suspicion is that it’s tied into a few other issues.

My husband was struggling with some type of infection. It never popped at Covid on tests but given the prevalence of various forms of colds, flus and other illnesses popping up in the back to the arena phase of fall I wouldn’t be surprised if we were both fighting something off.

I am hoping that staying in bed and drinking gallons of water and electrolytes will pay off tomorrow. The intensity of the pain has been unpleasant. Add in nausea and I’m mostly staying still and praying for relief. I’ll catch you all tomorrow.

Categories
Medical

Day 982 and Not Small Men

I’ve been working on getting a deeper understanding of my hormone profile and where I can better support my cycle.

I’ve been surprised by just how little we seem to know about women’s health and the baselines that are considered ideal. Between the battles over health education in school (abstinence only) and the eagerness with which we put my millennial generation on birth control as teenagers, we’ve got both an under-informed and potentially over medicated population. Which wasn’t the case for our mother’s generation who went on birth control much later in life if at all.

A tweet from last week

I’ve had my fair share of fucked up fertility experiences and yet I’ve only just in the last few years learned to understand how my follicular phase impacts me so differently from my luteal phase. If you don’t know what that means either well it’s probably time.

The phases a woman’s cycle

I generally feel most energetic, pain free, and happy during my follicular phase. Despite knowing this I couldn’t tell you what an ideal FSH hormone level would be. I don’t know what balance of estrogen I should have at any given phase. I have no clue what my LH should be during my luteal stage either.

It strikes me that these levels should be taught along with implications for what it means and how to work with them just as we know our ideal blood pressure rage and resting heart rates. It’s some of the most crucial and basic self knowledge about our bodies.

When I think of how many other crucial biometrics I’ve got memorized (I track my SED rate and CRP quarterly for inflammation) it seems odd that something so crucial as one’s hormones wouldn’t be known, tracked and improved. I watch my heart rate variability like my recovery depends on it because it does. So do most serious biohackers.

Knowing more about own health is part of being a responsible adult. And I’m sad that we do so little to educate women on basic rhythms. I can’t tell if it’s a lack of interest from women or a dismissal from the medical profession. Women aren’t just small men.

Categories
Biohacking Medical

Day 974 and Flare

As most casual observers of this daily log have probably noticed, one of my main interests is biohacking. It was a hobby in the time of my life I mislabel as “before chronic illness.” It’s not accurate so much as recency bias. I’ve been into biohacking my whole life because I’ve had to manage an unruly body.

I had the best health of my life between 24 and 34. I am rounding the end of my 39th year as I write today. I didn’t think of myself as being chronically ill for that decade.

Probably why I think of my life as having a “before” illness is more that I’ve been in the worst flare of my life for the last five years. It came crashing down with a one two punch of being a startup founder & getting pumped full of hormones for fertility treatments at 33. I was on bedrest and chemotherapy drugs by the time I was 34.

So I have to remind myself there is no time before chronic illness. There was remission. I had long years of robust health interspersed with autoimmune diseases that flared and were contained.

Diagnosis has been a lifelong battle which started with inflammatory skin conditions and horrendous allergies and ended up with the inflammation going inside my spine and joints. Ankylosing spondylitis and psoriatic arthritis is what codes with insurance.

Looking at my health records, I had my first issues at 7 when I entered school, then after puberty as teenager around 15 & 16. I had to drop out of high school and ran a giant let of standardized tests to claw myself to university.

I was hale for college and my first startup but flared so badly after the acquisition of my first company I was put on an experimental immune reboot protocol. Ask me about being put on cyclosporin without an organ transplant.

My most recent, worst and longest flare was in the five year battle after doing IVF and egg freezing in my early thirties. I’ve only really felt like I was able to work my preferred hours this past year. So perhaps that flare is finished. I don’t want to tempt it. Though I yearn to live harder & faster and bigger.

Writing it all out in a timeline makes it seem like the pattern is introducing change and stress into my routines but also there are two big incidents involving hormones. Being put on birth control as a teenager and then whatever the opposite of birth control might be with IVF. Maybe no more synthetic hormone control for me.

Managing your health isn’t easy for anyone. It’s particularly challenging for me. And if the current post pandemic climate is any indication a lot more people are grappling with poorer health. I wish I could offer more help other than saying it’s not easy but flares can be contained. Sometimes with a lot of pharmaceutical intervention. Sometimes with better habits. Sometimes with time. And sometimes it’s just a crap shoot.

Categories
Biohacking Emotional Work

Day 965 and Bounce Back

I had a really shitty day yesterday. I was attuned to the haunted corners in myself and others. I was in an astonishing amount of pain. I got into a fight with a family member over a misunderstanding.

I found myself in a state of reactivity. It’s a huge challenge to manage nervous system regulation for me when I tip from the pain scale from my typical 4-5 to the impossible ignore 7-8 range.

I have become quite used to living with pain that would be distracting for others. I monitor biometrics like my heart rate variability to keep track of how stressed my body is from the pain.

I’ve found it important to learn how to bounce back from unexpected pain. It’s important to stop stress and reactivity in its tracks. If you let stress hijack your nervous system you can do yourself a lot of damage.

I took care of myself last night. I did what I needed to get my nervous system under control and the pain manageable. And it worked.

I turned myself around today. I lifted weights, I meditated, I took my supplements, and I tackled my work load with pleasure. I can feel the fatigue sweeping back in as the day winds up. But I can rest easy knowing I set myself up to bounce back again tomorrow. Budget for the body you have and not the fantasy one which you don’t have.