Category: Chronic Disease

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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.

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Chronic Disease Emotional Work

Day 209 and Synthesis

The only downside of spending a day intaking a significant body of knowledge is that it’s nearly is that it’s nearly impossible to do synthesis on it at the same time. I suppose this holds true for new emotions as well. Synthesis and understanding takes time.

I’ve been on a tear working through how I feel on a number of topics just as I’m trying to ingest a new body of knowledge. I’ve got some inklings of where I will net out on all of it but it’s still a gut feeling. Any capable articulation that will be external to myself will require some synthesis. I can’t tell you what I’m on about as I don’t yet know.

And while I’ve set personal deadlines for continuous daily writing I cannot simply apply willpower to everything. In other words, I can force myself to write today it’s not possible to force sense on it. The synthesis hasn’t arrived even if the force of daily habit has.

It’s not that I’m admitting defeat on willpower, I’m sure I’ll be able to push my understanding over time. But expecting it today is probably a lost cause. The spirit may be willing but my wetware is fragile.

Fragility is of course one of my life companions this year. I’ve had to face that life is cheap and it’s simply not possible to worry about everyone. I have to sacrifice some of my own goals in order to keep myself alive. I suppose it’s not always a choice, except in that I’ve chosen to live and not die. That’s a choice.

But how I fortify and defend myself against the realities of biology, cultural frustration and freedom is in the end up to me. The pandemic has brought this home in a particularly acute way. Forced choices on us all, but particularly the vulnerable.

But I suppose I’m done trying to protect myself and gain ground. It’s going to be one or the other. It is time to take some risks even knowing that it will harm me. I’m recalculating what kind of destabilizing my body can take in the face of societal exhaustion. But the emotional synthesis of knowing consequences and having made a choice in freedom isn’t done in a day.

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Chronic Disease

Day 207 and Doxycycline

I don’t have a thesis or a point in mind so I’m just going to get started and ramble. I’ve felt like shit for most of July. Must have picked up some kind of infection on top of my usual bullshit autoimmune nonsense. I finally caved and asked my doctor if I could just try good old fashioned doxycycline. Six hours later I felt like a million bucks.

Sometimes it’s the simple shit that makes a difference. I don’t know if that is an Occam’s razor thing but I’m a little pissed that just tossing an old faithful antibiotic at me did the trick. But then I could be throwing some cool bias at this problem and be equating a bunch of causality that just isn’t there. Humans are prone to that.

Like did you know Occam’s razor was actually a justification for miracles? No shit. Occam was a friar and so into simplicity that he figured God was the easiest explanation. It absolutely blows my mind that there are logicians out there who will stomp on complex answers and holler “Occam’s razor” on your ass when the dude was saying my bias says probably miracles because that’s easier.

I don’t have anything more useful to say than that but this meets my daily criteria to write something every single day. So I’m calling it. Maybe tomorrow will be better. Which it might be because doxycycline!

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Chronic Disease Emotional Work

Day 201 and Take It Slowly

I woke up today feeling normal. I wasn’t in any pain. I felt rested. The excruciating exhaustion that has gripped me had lifted.

I was a little bit surprised as I’ve been fighting off a setback that has diminished my physical and emotional state. An infection required an anti-viral that just destroyed me for the last week and a half.

The relief I felt at having the energy and desire to do normal tasks was palpable. I started making “to do” lists and plans for how I was going to use the energy during the day. I bounded out the door at 8am to my favorite trail to get in a walk before the summer heat hit. I came back energized and immediately went to workout. And then I realized I was doing it again.

In my relief to have back a functional body I was setting myself up to be exhausted by immediately over doing things. . My enthusiasm to get back to doing “all the things” would again be my undoing. Some residual guilt over needing to get back to people was on my mind and I used this projected shame right back into myself. What a disappointment I was to people and clearly I must set it right immediately that I’d been late by a week. I needed to respond to startups, catch up on my diligence pile, and email back all the folks in my inbox plus I was behind on any number of fund tasks for Chaotic. I justified these obligations as a reason to beat myself.

I have often struggled with the feeling that I need to work as hard and fast as I can when I am physically well. Part of it is my general tendency towards workaholism. But part of it is fear that feeling well is transient and I need to make hay while the sun shines.

I talked myself down from it and kept a steady pace through the day. I didn’t rush. I took breaks. And I didn’t feel guilty or beat myself. Which was quite a relief. It seems I can learn to take things slowly after all.

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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.

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Chronic Disease Emotional Work

Day 198 and Kindness from Strangers

I’ve written about how terribly I’ve felt physically for the past 6 straight days. The last positive day of writing I had was 8 days ago. People have noticed the emotional tone of this struggle.

Generally speaking a day or two of being down doesn’t get noticed on social media, but a continuous streak of being “off” tends to get noticed by your community. Your mutuals know who you are even from afar. Your mutuals see your struggles. Your mutuals may know more about you than you imagine. And I’ve found your mutuals may genuinely care about you.

I’ve never felt less alone than I have the past year under quarantine. Maybe it’s because the network of mutuals that shares their personality and life has spent more time on the give and take of commenting, posting, responding and messaging across social media. When we are forced to contend with our own inner emotional lives we can extend more empathy to others.

So while others may have seen politicization, partisanship and other externalized anger on social media, I’ve found mostly grace and kindness. People who I have never met in the flesh have shared their knowledge, their vulnerability and their network with me. When I have opened myself up I have been met with with compassion and understanding.

If you share a period of struggle and your desire to get out from under it you may not be far from help. The kindness of your community is within reach. Even, perhaps especially, your social media community. If you are hurting share that burden. I have and it is much lighter.

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Chronic Disease Emotional Work

Day 196 and Exhaustion

I’m terrified of being tired. It’s the first sign of illness and a trigger of a cascade of traumas for me after fighting for two years to recover my health. The fear I feel when my energy flags is more than mere phobia. It’s the kind of gripping all consuming fear that stops all other emotions from surfacing. It’s a fear that stops joy and anger. It stops my my breathe and chokes out my chest if I pay it too much mind.

I’m already shedding unbidden tears probing a little at the edge of this fear. The fear that exhaustion will never lift sits in my body, scaring me into believing I’ll be trapped forever.

I’m more afraid of fatigue than I am of pain. Pain is complete and totalitarian yes. It limits your world sometimes in the extreme. But pain is not an enemy that cannot be overcome. When pain spikes or throbs I’m equipped with tools to combat it. It’s not that pain isn’t terrifying and all consuming. I’ve written about the challenges of chronic pain. How it robs you of your right mind. But it isn’t an enemy that extracts complete victory either.

I feel I can fight back. Light pain can be tossed out of my consciousness with mindfulness exercises. Even a slight self inflicted pinch can deflect pain. If it’s unbearable there are pharmaceuticals on hand. It’s not that I don’t find pain to be consuming, I do and it is, it’s that it doesn’t feel impossible to conquer. I have tools with varying degrees of efficacy that let me retain my agency with pain.

With exhaustion I have nothing. I fear exhaustion is an enemy I cannot best. There are no tricks for my mind that give me a boost of energy or remove the obstacle of feeling leaden. The tiredness is too complete to be overcome by mantras. There are no drugs for exhaustion. Stimulants can drag me out of bed but the crash afterwards makes it clear the effect was extracted under duress.

A doctor doesn’t mind giving opioids for a patient with spinal swelling but telling them you are tired doesn’t do much. What could they even give you? Caffeine? Aderall? Of course you are tired they say, your body is fighting inflammation. In this moment, I’m overcoming an infection and a poor reaction to anti-virals. An inability to crawl out of bed is a given. Nothing can be done. I just need to ride this out and hopefully it will lift.

But I’m afraid of the tiredness that has taken hold of me this past week. The fear that all of the work and money I’ve put into recovering my help might have been for nothing lingers. I logically know, and doctors confirm, that I’m simply fighting an infection and we had a slight complication with the medication. They say I’ll be feeling well a few days. They asked me to stay in bed for a few days. But I cannot shake the fear that it it’s permanent. The fear that I’ve lost all my progress is real. I just hope I can convince myself that feelings are not facts.

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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.

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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.

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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.