Chronic Disease Preparedness

Day 286 and Appointments

I’ve been going to a bunch of appointments in the past week or so. And I’ve got a bunch more lined up in the coming weeks. My calendar is a mess of obligations; optometrist, dentist, gynecologist, and the hair salon for starters. I feel like I’m drowning in appointments.

I made the mistake of not capitalizing on the last dip in case numbers in the late spring and early summer and missed the pandemic window before delta. I didn’t want to make that mistake again so I’ve been hustling to have the appointments that I’ve been putting off for the last 19 months. Check my eyes, check my teeth, check my fiddly bits. And yes cut my hair. God is my hair long.

There is so much maintenance work that has been piling up that I wonder how I’ve made it through the entire pandemic putting all of these life chores off. Has everyone been putting off their appointments? Was it just me? Or is it just people who are still trying to limit their exposure to infection?

I grant I’ve got a very different risk profile than the average American but I feel like it’s probably not unusual to put off stuff you are supposed to do but can probably live life without. But should you? So far no one has found anything wrong but maybe it’s just luck that I could go for two years without someone checking my tits or my teeth.

I didn’t put off any of my truly crucial health appointments over the pandemic but I am sure other people did. The eye doctor is something I tell myself I can put off for two years but maybe that’s a rationalization. Did others do that with annual physicals? With breast exams? What else have we been putting off in our appointments. It feels like I put off my entire life. And now I’m scrambling to fit it all in before something else has happens.

Emotional Work Internet Culture

Day 283 and Presencing

Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important.

I was browsing Anne Helen Peterson’s newsletter Culture Study when the above quote hit me over the head. The interview was on the topic of ambiguous grief with a media studies professor Samira Rajabi. While the writing is almost uncomfortably academic it resonated with me immediately. I have been engaging in presenceing for the entire course of my illness. I just never had a name for why I felt like a public presence mattered to me.

While it sounds unbelievable, I never considered that I might be using social media as a way to give myself visibility in the face of the trauma of an extended and chronic illness. I’ve always been a heavy user of social media so I didn’t find it unusual that I spent significantly more time on Twitter and blogging as I went through the diagnosis and recovery process.

I had been used to being visible in my previous life. I was regularly in media for my startups and I had cultivated some amount of public presence on and off since I was in college. But I didn’t really become a Twitter personality that cultivated a presence and interactions and a voice until I got sick. Without knowing it was presencing myself.

In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

I really wanted my story to fit into a narrative when I first got diagnosed. I had all kinds of ambitions of overcoming and healing that were quickly dashed on the reality of my life. I was never going to be normal again. And I hated that. I still find myself overcome with grief at the prospect that there is no triumphant return.

But I want people to see that grief. And see that it’s alright. That life went on. I didn’t lose myself. Even in pain and illness, or perhaps because of it, I’ve gained ground in finding myself. The pain and degradation of illness is ugly and shitty but also powerfully transformative.

I have not given up just because the narrative isn’t clear and the story has no simple arc. Any impression we have that stories have structure is imposed in hindsight. We love our post-hoc rationalization. We love our pattern recognition. But the through line is never clear in the moment. And that’s why presence matters. We all need the visibility of the truth even if it doesn’t fit neatly into the story our culture has given us.


Day 266 and Out Like A Light

I nearly missed my daily commitment to write (or as it autocorrected “weird) everyday. Yesterday I was overcome by an intense need to sleep. I could barely manage to get a sentence on paper, tag it, and put it out before I passed out completely. It’s the closest I’ve ever come to missing my daily writing exercise in over two hundred days.

A narcoleptic spell would be pretty cool but I think it was a much simpler form of fatigue. I’d been so focused on a number of exciting projects (including a startup with a founder that is the best I’ve seen all year) that I just needed a rest. I couldn’t push it anymore and needed to sleep.

I didn’t feel any of the poisonous desperation from workaholic exhaustion that I’ve felt in the past. This felt like a simple tiredness that was so complete I couldn’t overcome. I fought off closing eyes as I tagged and hit publish.

And I was out. In the past fatigue has been a draining but far too lucid an experience. The kind of tiredness where you wish you could sleep but the combination of worry, focus, and anxiety would keep you awake is more familiar. I much prefer the clean tiredness of being unable to fight off sleep. Though if I need 12 hours of sleep if I work too many hours that might get a little annoying.

Emotional Work

Day 231 and Afraid of Feeling Fear

Being sick has left me with some scars that I am working through. Currently I’m afraid of pushing myself to my limits. I don’t know it for a fact but I fear some of the severity of my illness was tied to the overwork that is required when working in startup life. So now I’m afraid of overdoing things physically. I’m struggling to even set the boundaries of what 50% capacity would look like.

This isn’t the first time I’ve struggled with the question of my capacity. I’ve been a fan of what I call the “Gattaca” method since I was a child. “Never save anything for the swim back.” But now having experienced the worst case scenario of being unable to work for two years I’m gun shy. That common knowledge says failure “is never as bad as you imagine” is bullshit. Losing two years of my life was fucking awful. What if next time I give my all and I lose more than two years? I’m running myself in circles with this fear without any indication that it will become reality.

When I was a teenager I rode horses. I liked cross country eventing where you jump over obstacles on an open field. It’s a bit dangerous. That’s how Christopher Reeves got hurt. I had plenty of spills but it never really upset me. I always got back on the horse. I wanted to become more competitive so bought a thoroughbred who was being retrained from being a racehorse. I thought I was a talented enough rider for the job. I wasn’t.

He was a high strung panicky creature and threw me into a wall. I cracked my helmet, blacked out briefly and was diagnosed with a concussion the next day. Despite the severity of the fall, I got back on the horse immediately. I was afraid of being scared. So I pushed through.

Turns out I should have just felt the fear. I should have gone to the doctor, allowed myself to recover and not pushed through it. I never fully recovered my nerve about that concussion. I just slowly circled the drain emotionally and my fear won over my enthusiasm for rising. I never went back to competing in eventing. Instead of working through my fear I chose to ignore it. That turned out to be a sure fire way to let fear win in the end.

I don’t want to be afraid of being scared. I want to embrace my feelings and their origins. I want to come to terms with them. Because unlike horseback riding, I intend to keep working.

Chronic Disease

Day 224 and Wanting a Break

I don’t want to write today. I feel foggy, unfocused and anxious. I had to have a medical procedure last week whose preparation was destabilizing. I felt pretty good coming out of it but a few days on I guess recovery has its own logic.

I don’t want to feel like this. In order to have the procedure done we had to remove me from all of my medications. Not normally something you do unless you have no other choice. Which in the end I didn’t feel I had. And I’m struggling. Modern medicine works pretty well. Some of science is neat.

I don’t want to be writing about any of it though. I’m scared, tired, sad and angry about all of it. I want to be alone. But my mind is so fatigued I cannot come up with any other topics. I tried to focus on fun things like the PR DAO I’m working on and some investments I’m excited about.

But I just can’t seem to make sense without a lot of energy and focus. And the doctors would prefer I keep the energy for my recovery.

So I’m stuck writing baleful takes about sleeping and migraines. I’d rather crawl into a hole and lick my wounds in private but I promised myself I’d write every single day.

And it seems I’m unable to write anything remotely intellectual. It’s all emotions and physical ailments. No wonder I’ve been watching so many BBC period dramas. Their leading ladies seem so relatable at the moment. Which is why I’m stuck writing about life as if I were some talentless version of Virginia Woolf. I’m incapable of writing about anything else but the consuming nature of feeling like shit. Write what you know is all fine and well until the thing you know most intimately is physical frailty.

On the bright side I did learn today that Herman Melville and I share the same diagnosis; ankylosing spondylitis.

Herman Melville endured chronic pains in his joints, back and eyes, symptoms consistent with ankylosing spondylitis, an autoimmune disease.

Maybe pain relief was his white whale too. Of course, he didn’t have the benefit of biologic injections like IL inhibitors. Maybe that’s why he wrote the great American novel and I’ve got a daily writing habit. I know glorifying and romanticizing suffering is a habit I’ve got to kick.

Chronic Disease Internet Culture

Day 217 and Reasonable Accommodation

Accessibility is an interesting topic for Americans as we pride ourselves on being the land of opportunity. Every citizen has the right to life, liberty and the pursuit of happiness. Of course, in practice the outcomes of this pursuit are wildly unequal. But we all generally agree that every American should be given the same chance to pursue it. We want the American dream to be accessible. Equal access matters.

I feel this particularly strongly because I’m disabled. I have an autoimmune immune condition called ankylosing spondylitis. My immune system attacks my body and it manifests in occasionally inconvenient symptoms like swelling in my spine that makes walking painful.

Thankfully I was born an American and I live in the twenty first century. We’ve got modern medicine. So my life can basically be normal thanks to immunosuppressant drugs. If you didn’t know my medical history (ok that’s unlikely as I write about it, like, constantly) you couldn’t tell I’m disabled. I’ve had absolutely equal opportunity to pursue life, liberty and happiness. I’m deeply patriotic as a result. No one treatments me like a second class citizen.

But I get the impression that some people might try. Invisible disabilities have some upsides, you get treated normally, but the downside is you can see the kind of unconscious discrimination and bias people have because they’ve got no useful signifier like a wheelchair which reminds them to keep their mouth shut around you. Which means I hear a lot more of what people really feel. For which I’m grateful. I’d rather know if you think I’m less equal than you.

Watching able body healthy folks discuss vaccines has been a real trip for this reason. The sick and the elderly are ostensibly the reason we engaged in efforts like stay at home orders and now vaccinations and masking. We’ve made reasonable, and occasionally unreasonable, accommodations for the sake of our most vulnerable. The vast majority of Americans did what they could.

Now the accommodations are becoming more more permanent and less inclusive. And I wonder if they are reasonable accommodations for everyone. New York City is instituting vaccine requirements for indoor dining, cultural venues, and indoor public places.

People are going to get a really clear message: if you want to participate in our society fully, you’ve got to get vaccinated. It’s time,” NYC Mayor Bill de Blasio said at a press conference.

I want to participate in society fully. But getting vaccinated hasn’t been easy for me. I am one of the small number of immunosuppressed Americans for whom the vaccine either isn’t an option at all, comes with significant risks, or doesn’t work at all. It’s a misery to not be able to take advantage of one of science’s most significant achievements. I want to be successfully vaccinated very much. It may be possible but it’s costs are very high for me.

Now I grant I have no intention of going to a concert in Manhattan but it hurts to see people casually suggesting that all people who remain unvaccinated did so as a personal choice. It’s not really a great choice pursue a destabilizing course of treatment that may take away my ability to walk and cause significant pain. But sure. Call it a choice. I wouldn’t wish it on you.

People like DeBlasio do not seem to recognize that the message being sent is I can particulate fully in society or I can be one of those dangerous anti-society anti-vaxxers. It’s “one of us or one of them” and the “them” are bad guys. I’m not anti-vaccine. I think it’s generally safe for the vast majority of people and I hope that if you are healthy that you make the choice to get one. But not all Americans are so lucky.

So I beg you to reconsider your choice of words when discussing how much you disdain the unvaccinated. How it’s your choice to be an outcast of society. And don’t phrase policies like DeBlasio did. I deserve to be a part of society too. You made reasonable accommodations for people like me. Saying that I’m now a societal outcast is exclusionary. It’s pretty fucking in-American. Find a damn reasonable accommodation maybe.

And sure I’m not going to be attending anything at Madison Square Garden. But don’t legislate that into a final demarcation. Don’t caste me out forever. It’s not like I don’t know it isn’t safe for me. But maybe one day I’ll feel like it’s worth the risk to dine inside with friends. Maybe that’s an unhealthy impulse to take such a ridiculous risk, but so is drinking and eating fried foods and I’m allowed to make those choices without legislative interference. If I wear a mask and show a negative test maybe Bill De Blasio can see it in his heart to let me chose my own risks. But don’t for the love of America say that the unvaccinated can’t participate in society. I promise you will not like where that leads. A second class citizenship has never ended well.

Chronic Disease Politics

Day 199 and Vaccination

I’m not vaccinated against covid-19. It’s not a political stance. I’d very much like to be vaccinated and have it work. But I’m in the small category of folks for whom vaccinations do not produce antibodies. And to make matters worse, the only way I could “potentially” produce the antibodies in response to a vaccine is so destabilizing my doctors don’t want me to pursue it right now. So before being super smug about how this is a pandemic among the unvaccinated and it’s a “choice” for a small portion of us it isn’t.

I take immunosuppressants because my immune system has gotten some dumb ideas about attacking my body. I have had anaphylaxis a dozen times and allergies aren’t even my primary medical issue. That would be swelling in my spinal column. It was bad enough at one point that I couldn’t walk.

I’ve tried a lot over 2 years since it was diagnosed to keep it controlled. I was on chemotherapy drugs for about six months (I don’t recommend methotrexate at all and not just because it’s mustard gas). I was on high dose steroids long enough to develop a chemical dependency on them that required supervised titration down. Plus it made me fat as fuck and that annoyed me. Eventually my doctors settled into the suppressant category known as IL, or interleukin, inhibitors.

These drugs fucking rock and gave me my life back. Thanks to them I can live basically like a normal person with the exception that I need to be careful as I’m more susceptible to infection. We are quite literally suppressing my capacity to develop immune responses. You kinda need immune responses for vaccines to work.

Immunosuppressants and vaccines don’t really mix. I had to go off them to get a flu vaccine and I relapsed so badly my doctor was like well I guess it’s going to be masking for you in the future during flu season. About 5 months later the pandemic hit. Fucking hilarious.

If I go off my IL inhibitors eventually I’ll relapse. It’s possible I can make myself less prone to inflammatory responses but it might all be bullshit. I go to a stupid amount of trouble and money and engage in a lot of woo to make the rest of my health as strong as possible so I am not as prone to inflammatory responses. Maybe it will work. But quite frankly I’m not interested in finding out right at this moment if I can live without the drugs that saved my life.

Why does all this matter? Because you need to be off of immunosuppressants in order to have a vaccine work. And I’m not fucking going off my suppressants. Nor is it recommend except in stable cases.

It takes three weeks to dose them out of my system, three weeks off them before a vaccine of any sort would have a chance of generating an antibody response, and then another 3-6 weeks of injections get back to a baseline of stability. (their effects tend to be cumulative). And that’s because I would only be able to get one stick J&J as I happen to be allergic to the PEGs that stabilize mRNA vaccines, so I have to do one and done. But that’s an aside.

Basically I’m looking at 3 months of intensive inflammation that will cripple me just to get a vaccine. Because of a host of other complicating factors my primary caregiver physician and rheumatologist have recommended against me getting the jab. It will be hugely destabilizing to me (which is its own risk) and even if I get it, we just don’t know if I’ll produce enough antibodies while I’m on the suppressants. It could be for nothing.

It’s basically lose lose for me. It won’t work if I’m on the drugs and if I’m off the drugs I’ll be so sick it’s a crap shoot if I need to be hospitalized for going off them. Which ironically would put me at even higher risk of covid exposure. My doctors do not love this.

With the Delta variant on the rise I don’t know if it’s actually worth destabilizing me or if it’s a risk worth taking. It’s a crap shoot. I isolate. I mask. We didn’t want to fuck me up. It feels damned if I do and damned if I don’t. And I feel super alone in this status as everyone is acting like it’s a choice. And yes it is my body and my choice. But what choice would you make? My doctors aren’t sure either.

Chronic Disease Emotional Work

Day 195 and Waiting on Hand & Foot

I’m embarrassed that I need help with minor physical tasks. I’ve got an infection of the self sufficient Americana myth that seems to have taken root right in my very marrow. If you need something done you’d better do it yourself right?

When I was much sicker and undiagnosed two years ago, it felt easier to accept help because surely it must be temporary. There is no harm in needing help if you know you can pay it back tenfold? There is no harm in being unproductive for a time if you can pay it it back with interest.

But what will if can’t pay it back? What if I must rely on the kindness of others forever? Early on I struggled with little things like needing to use a wheelchair in the airport. I told myself stories like“I could walk if I just tried harder and accepted more pain” as I went through the concourse on the way to a hospital stay. I couldn’t pay back fellow travelers for slowing them down. And maybe no one minded that I was sparing myself pain for little inconvenience on their end. Perhaps I could accept small types of kindness.

But what if it’s not temporary? And what if it’s a significant amount of help! What if I do need help with basics for the rest of my life? Thanks to a recent trip my husband took I learned his running of the household increases my capacity by a full 30%. I could do everything just fine on my own but it would make my life much smaller. And it doesn’t seem to make his life any less enjoyable. On the contrary he shines when showing off his excellence in operational matters. It’s possible what I see as an undue burden is something he quite enjoys.

But I can’t quite convince myself it’s a good thing. The self audience myth has a deep hole on me. But if a third of my capacity disapates into tasks like cooking, cleaning, errands, and logistics but I’m enriched and energized by work like writing or working with the media then shouldn’t the choice be obvious?

And yet I still find myself embarrassed and angry about my limitations. . Why did it exhaust me so much to stand and wash lettuce? Or require so much rest to recover from a short run to the pharmacy. Those are small, albeit physical, tasks. My soul feels broken and my body a traitor with these small physical limits.

Whereas other pursuits can be done from bed. And even though it sometimes makes me sad it’s not always my choice, I don’t mind that my world is often limited to lying flat for hours on a mattress. I don’t resent it. In fact, it makes me rather happy. I’ve got the whole world available to me thanks to the internet. I can invest as easily in bed as from a fancy office. Twitter is just as good a connection to the networks of ideas and power as conferences or clubs. Better often.

The only part I resent is feeling like I’m a burden. Like I need to be waited on head and foot like some aristocrat or an ailing relative. Well not like an ailing relative. I am ailing. That part is the. But I can thrive in it with help. I just hope I’m not to embarrassed to take it.

Chronic Disease

Day 194 and House

The downward pressure I was discussing yesterday is taking me out for a few days. My doctors are torn between whether it’s the virus I’ve been prescribed some exciting news drugs for, or if the exciting news drugs are simply too much for my body to handle. The minimum viable dose in pharmaceuticals can be tricky. Too much and you kill the virus and it’s host. Too little and the suffering continues on.

I was watching the tv show House last night. It seemed like an appropriate show to rewatch as when I first came across the show I wasn’t myself an idea “House” patient felt extremely soothed by it. Would I make to watch a doctor that gets to the heart of odd diagnostics? Who instead of saying “well the tests are normal” says “these tests don’t help us explain the symptoms” and carries on? Why yes I would.

I’m lucky to have a number of doctors who do the same. It makes watching the show enjoyable as I’ve sat through countless diagnostics meetings and drug experiments that sound exactly like the ones on the show. I recognize tests and treatments. I’ve been put on several of the drugs just for the two episodes I watched last night.

We are dosing down on the antivirals for a few days. I’ve been told to get some rest and not to add in any stresses that I can avoid. While I don’t think writing is stressful I do think checking off the box for my daily essay would feel like a relief. So I’m doing that a bit early and keeping it short. If you are inclined to send good energy my way or you are from a tradition that values prayer I would appreciate being in yours.

Chronic Disease Emotional Work

Day 193 and Downward Pressure

I’ve had a terrific year (pandemic aside) with significant progress on my health. I’ve become used to seeing positive trends, especially within the last six months. But the last month has been a mess for me and the downward pressure is getting to me emotionally. I’m afraid. The fear of a setback is palpable.

I haven’t been able to pinpoint exactly what has been causing a dip in my progress or frankly if it is even a dip, as it could just be a few bad days. It may be that I’m just not progressing as fast as I could have hit some Pareto Principle limit and it’s just going to be a slog to get the remaining gains. Some of my metrics continue to improve (I’m seeing cardiovascular improvements still) but my energy, pain and inflammation seem to be going in the wrong direction.

I’m crushed by the exhaustion in particular. And sadly I know this to be real. Because I take immunosuppressants I am prone to infections. To combat one I was put on a course of antibiotics which seems to have some negative side effects. So now I can’t tell if I am exhausted because I am running an infection or because I’m having a bad reaction to the drugs. Could be both.

I feel angry at my body for this pause in progress. I’ve been working so hard at improvements. When I look at how I spend my time I am often overcome with resentment and envy of healthy people. It saddens me how much more of my life needs to be dedicated to doctors than a normal person. It’s especially frustrating as in the spring I was regularly noting how well I was doing and how much capacity I had to work.

Of course, the benefit of writing every day is I can go back and see what was going on. I’ve been doing plagued by the caprice of my body before.

The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain.

It’s my hope that this is just another local minima and I’ll be able back to my “normal” soon. Even if I have hit 80% of my gains I can manage with that. But it’s valuable to recognize the negative emotions as they come so we can let them go.