Tag: Chronic Disease

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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.

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Medical

Day 985 and Know So Little

Every time I have have cause to interact with any medical speciality I find myself blown away by just how little we know.

I’ve been going back to doctors to understand what my options are for living with an autoimmune condition and having children. And the truth is we just don’t know much.

I made a life altering decision several years ago by letting a medical decision be framed to me like a consumer product. We opted to freeze eggs and embryos and it turned our entire lives inside out. It triggered an autoimmune response in me that I’ll live with forever.

Somehow in the intervening half decade years we’ve learned precious little about women’s health and fertility. And we are advocating for somehow knowing even less.

Because that’s what we’ve done by letting the government into our health decisions. Don’t kid yourself into thinking when we involve government and bureaucrats we somehow improve our knowledge and safety. At it’s most friendly, when the government shows up it’s about ass covering. At it’s most hostile it’s about control.

We argue about ethics, safety and life as if we even have a shared ideal of any of those concepts. Whose life? My life? My unknown children? I’m not convinced we ever cared about women’s health as an independent variable. We treat fertility as a sideshow and hormones as some variable over which we pretend to have control. And yet every time I try to assess my own risks I find out that we known just about nothing. There are no good answers. And it’s all poorly understood risks.

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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.

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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.

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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.

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Emotional Work

Day 963 and Chronic Stress

I don’t think of myself as living a particularly stressful life. I’m one of the luckiest people I know. I love and am loved by my family. I own a homestead in Montana. I work with brilliant people.

My one burden in life is my health. I don’t want to undersell how much it affects my life (my ankylosis needs careful management) but I simply treat it as a fact of life. There is no reason to be upset about reality.

As social fabric tears and lives get worse under stress, it’s easy to become a victim to the things in our lives that trouble us. We can compare our gifts to others but one man’s troubles is another man’s perfect life.

I see the stress that is affect everyone I encounter. The fears range from existential to quotidian. Everything from the challenge of finding a doctor to the collapse in fertility rates can be a sign of the times.

I work to regulate my nervous system to accommodate whatever reality is in front of me. Sometimes that will include stress lot of my control. But I can work to control my response to it.

The better I get at this process of regulating myself I open up to the world. Taking on the agency you have available to you is a powerful social signal. I connect with others more readily as I show others that I can take care of myself.

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Emotional Work

Day 959 and Averages

I did not react to a drug in an average way. I’m really pissed about it. I went in so confident based on what the studies has shown. We’ve got this fantasy of science and specifically medicine that has very little appreciation for what it does to outliers.

We discuss what’s most likely. What’s average. What’s typical. We explain the difference between mean, median and average. We have rigor. We have regressions. We can come to an understanding of what the models agree is conforming to our understanding. You should probably see these results.

And then we gloss over the bad data. The outliers. The grits of sand. The flecks of reality that make your model jitter. The shit that just makes things more complicated. So maybe you toss it out.

And it mostly doesn’t matter. Because your body probably is pretty average. And that’s a great thing. We tell stories about what it means to be unique even as you are no different than anyone else. Pixar movies are about our ineffable spark of humanity soul even as it reflects on how we are all really just the same. Shared human experiences are universal. Probably because our bodies are pretty similar.

I sincerely believed I was average for most of my life. I was raised with that as a value. And now as an adult I see how I’m average in so many ways. But my body will never fully reflect a shared reality. You get to know what works for you even if you know what boundaries are a little different for you.

You’ve got to know the contours in which you are exactly as your reality would indicate. That’s your ego speaking generally. But the ways in which you are not matter too. That’s where you tailor treatment.

Categories
Biohacking Chronic Disease

Day 953 and Sugar

If you’ve been following me for a while chances are good that you’ve seen me discuss my biohacking.

I’ve got an autoimmune condition called ankylosing spondylitis. It’s a form of arthritis in the spine. When it flares the inflammation can be so painful that basic tasks like walking or standing can be out of the question. It’s impacted my daily life in strange and sometimes sadly poignant ways.

Now thanks to the wonders of modern biologic injectables like interleukin inhibitors (my lucky number is IL-17h), non steroidal anti-inflammatories, the occasional round of chemotherapy workhorse methotrexate, and the ultimate big boss inflammation killer known as prednisone I lead a pretty normal life.

I am however always looking for new ways to improve my situation. You name a modality of healing and I’ve surely done it.

I’m regularly throwing myself at new pharmaceuticals, new workouts, new devices, and new routines. I track it all obsessively. If you want a 10 day water fast buddy call me.

This kind of thinking means I am prone to optimism and the occasional “one weird cure” line of thinking. The hope that springs eternal is the fantasy what ails can fixed with a gluten free diet (nope) or the du nude Goop wellmania cure which costs $500.

One of my biggest “I’ll be cured” fantasies is that the extra body fat I gained from multiple rounds of steroids and hormone treatments is actually the cause of my health problems and not one of its symptoms.

Notice they I don’t say biggest fears. My biometrics don’t really suggest that adipose tissue is my root issue. Being fat is a core problem for many people but for me it’s a symptom. I don’t want to disclose said biometrics as I fear insurance companies and pharmacies might decide to dig.

In pursuit of a cure for this symptom, I’ve been way ahead of the GLP-1 agonists like semaglutide. My Novo Nordisk and Eli Lily stockholdings are up 100%. I had success on Ozempic but went off it as the side effects got to be too much for me after nine months when I reached a healthy body weight.

But I recently I paid out of pocket to try Mounjaro as I’ve not happy with where I am currently at for excess adipose tissue. It’s supposed to be less brutal on the stomach. It’s got a duel mechanism as a GLP-1 and GIP receptor have lead to excellent clinical trial results.

I’d say about three weeks in those results for me are not forthcoming. I’ve been in a perpetual state of low grade anxiety that seems to be from hypoglycemia. I’ve been sluggish, cranky, moody and my mind unfocused and hazy.

As it turns out the glucose-dependent insulinotropic polypeptide receptor (GIP receptor) primarily affects the body’s physiological response to food intake and blood sugar regulation. So I’ve got low blood sugar.

Luckily throwing fruit at the problem helps the symptoms. I have not lost so much as an ounce though. I think I’d rather go back to Ozempic which at least took weight off. I’d rather have a fucked up stomach than a fucked up mind. Maybe other people need to eat less sugar. I guess I don’t have that problem.

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Biohacking Medical

Day 927 and Standard Operating Procedure

I’m going to be nursing my husband through oral surgery recovery this week. He’s run out the clock on wisdom teeth and they all need to be removed.

We will miss a few obligations this week but such is the nature of medical need. Necessity doesn’t always come when you want it. If we don’t do it this week we’d be waiting till November for the next appointment. Such is getting medical care in this day and age.

I’ve been in a bit of a frenzy preparing as I myself have some medical issues that are chronic so if we are both fucked up physically it gets a little tricky to manage routines. Particularly because we live a little bit country these days in Montana.

I’ve gone down a deep rabbit hole of procedures for surgical recovery. I looked up standard operating procedures for inflammation and surgical recovery from every source I could find. I consulted with our doctors. I looked at risk factors.

You’d be surprised at how optimal procedures differ from the standard median recommended ones. The fear of overprescribing pharmaceuticals runs pretty rampant even when it’s clear that some protocols would be beneficial like say post surgery prophylactic antibiotics. The NIH, Mayo and Cleveland Clinics agree it’s a effective way of preventing complications related dry socket. The condition can turn into a painful infection that is relatively dangerous if it gets out of hand given it’s proximity to your brain.

But we can’t make an antibiotic standard operating procedure as it’s not technically necessary. Especially since we have prioritized using less antibiotics overall as a public health policy for the wider social good of preventing antibiotic resistant strains of bacteria. Good of the many versus good of the one. I’ll admit I’d be inclined to say that my husband deserves the Spock treatment even if it is illogical.

I’ve written out an hourly schedule for the recovery procedure I intend to follow. I won’t post it all here as it’s obviously not in my best interest to disclose it. It’s involved and intended to reduce inflammation and have the maximum pain management that is responsible so that my husband’s body can recover quickly with no unnecessary stress.

Proteins powder, bone broth and soft foods

It seems as if a lot of recovery comes down to simply retaining adequate electrolytes balance with enough liquid calories. You have to meet a macronutrient balance that gives enough protein to knit the tissues and not make the body think it’s resource constrained. Which is harder than it sounds when you can’t chew or even suck on a straw.

I’ve got a number of techniques to leverage from lymphatic drainage massage to the woo woo options to reduce stress and promote recovery and I intend to use all of them. And yes I’m available for nursing.

Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

I am experiencing very palpably the literal meaning of being “thin skinned” this week. All the areas where my skin is thinnest (eyes, lips, fingers, and other more delicate spots) are inflamed.

I’m beating back some kind of this autoimmune response to having some pets in the house with everything I’ve got, and have thus far kept it from cascading but only just. It’s taken a lot of pharmaceutical intervention. I’m high on anti-histamines, cranky from the itchy, and fearful it’s already turned into a systemic infection.

I’ve got some animal allergies that I’ve kept from being isolating and overwhelming by simply not keeping pets inside. I can usually tolerate some exposure if I’m very careful with hygiene. Please ask me about my psychotic indoor clothing routine. And yes it was developed with an allergist hospitalist when I was 15. I’m beyond embarrassed by it.

I suppose this approach might make more sense if you knew that I’ve had my immune system rebooted with drugs as diverse as cyclosporine (they use that for organ transplants) and chemotherapy injections (methotrexate the WWI superstar).

I take regular immuno-suppression for ankylosing spondylitis which is functionally psoriatic arthritis in my spine. I have inflammation inside my body & outside on my skin depending on the flares. And I’ve done everything I can for it from allergy shots to 4 separate daily antihistamines

I am more reactive to my environment than your typical take a Benadryl allergy type. If you’ve seen that video going around of the 300mg THC pizza joint and thought “what the fuck who has that kind of tolerance” well I’ve got that kinda tolerable but with allergy medication. I can toss back 100mg of Benadryl and remain conscious.

I’ve got no Darwinian explanation for how someone like me is an end point for evolution except that we must value the extremely sensitive for some less legible but nevertheless crucial pro-social function. Maybe we spot the danger sooner? I truly do not know.

But I am thin skinned. I’ve been trying to manage additional allergen exposure all week as we’ve had dogs in the house that I very much would like to be able to tolerate.

I really thought with proper medication and cleaning I could keep reactions to a minimum. I didn’t want to make it a thing. And it would seem the reward for being thin skinned is actually having to inconvenience people by telling them that my having thin skin has consequences.

It’s unlikely I can get my symptoms down without having a total reprieve but we’ve done what we can. We didn’t resort to steroids so it could have been worse. Though part of me wishes we had as some skin is beyond uncomfortable.

I feel both embarrassed and frustrated that no one noticed my discomfort till I had to say I can’t tolerate it any more.

It makes me feel like I don’t matter unless I come with a story of misery and pain. Having to speak up for needs with extremely firm uncrossable lines always feels like abandonment to me. I wish people would see the discomfort, misery and isolation isn’t a choice so much as a medical necessity. I do my best to manage it but it’s easier when it’s a shared priority.