Category Archives: Health/Disability

Shockies

Posted on by wink ;)

[This post is part of my Medical Conditions Series.]

Every other month or so, I get an episode of nerve pain that is completely separate from my testicular pain and my cluster headaches. Each episode lasts from 1-3 days. It always starts with a patch of my skin becoming extra sensitive, as if it had been sunburned or rubbed raw. Usually the patch is on my scalp or affects the trigeminal nerve; other times it will be on one of my forearms. The patch could be anywhere through (thigh, abdomen, the back of my hand) and any size (across both arms and shoulders, the entire right half of my body, just my little toe).

If it is a light episode it only lasts for one day, and never gets worse than the sensitivity. But in bad cases (most of the time), it progresses to what I call “shockies”. After the patch has been sensitive for half a day or so, the nerve (or nerves) in the patch will start randomly shocking me. It’s like the nerve is getting electrocuted. The pain is blindingly intense–about the intensity of a medium strength cluster headache–but intermittent and very short (about half of a second long or shorter). The pain can flicker off and on several times over the course of a couple of seconds. Or it can just come as single pulses once every 20 minutes or so. Or anything in-between. The nerve will shock me like this for a day or two, and then fade out so that I just have the patch of sensitive skin for a while. Then it goes away for a few months.

I don’t know what causes it, nor do I have a real diagnosis for it. I don’t have any treatments for it. But despite how painful it is, it has almost no impact on my life. The pain is so short that it is over before I can even react to it. It comes with no warning, so I can’t anticipate it. And there’s nothing I can do about it. The shockies don’t make my muscles twitch or make me flinch. It’s just BAM an electric flash of pain and then it’s gone. In the end, I just don’t worry about it and just wait for it to run its course.

The shockies are just another source of pain, a relatively light one compared to the others, that adds to the texture of my ongoing pains and living life with chronic illness. I complain about them when they come around–they increase my misery quotient and they make my other pains that much harder to deal with–but overall they’re not a big deal.

Insomnia

Posted on by wink ;)

[This post is part of my Medical Conditions Series.]

I suffer from insomnia. Or more accurately, Shift Work Sleep Disorder. Basically, my body wants to sleep from 5am – sometime in the afternoon (this has gotten progressively later as my other issues have gotten worse since being sick is f**king exhausting) despite all attempts to get me on a normal circadian rhythm.

I’ve always been a night owl. When I could set my own schedule (i.e. when I was in college, and when I worked at a start-up) my body gravitated towards going to sleep at 2am, and waking up around 11am. But when real life intervened, it wasn’t very hard for me to go to bed at 11pm and wake up at a normal time. For a while, anyway.

But when I became a parent, I took over the night shift watching the kids so that C could keep a normal schedule. And around that time, my cluster headache cycles were becoming increasingly frequent until they finally just ended up becoming chronic. My first line of defense for aborting cluster headaches is to drink a lot of caffeine. So in addition to deliberately becoming nocturnal for a while, I was also messing around with my sleep cycle by taking large amounts of caffeine at random times throughout the day.

As my testicular pain increased, I became more and more exhausted. I started sleeping longer hours at more random times. For a while it was completely erratic–I’d sleep for a couple of hours, then wake up randomly, then nap sporadically. There was no pattern throughout the days and I didn’t get any big consolidated blocks of sleep. Part of this was due to the meds I was on at the time, and part of it was a result of the increasing amounts of pain I was in and the chaos that meant for my body.

Now I sleep for about 12 hours a day on average, usually during the day, with interruptions to take meds, eat, and handle responsibilities (like taking the kids to and from school). But on any given day, I might only sleep a couple of hours, and then follow it up with 22 hours of sleep the following day. Some days I end up on a normal diurnal schedule, but most days I’m nocturnal. It’s not totally erratic, but it makes interacting with the rest of the world tricky from a scheduling point of view.

Testicular Neuralgia

Posted on by wink ;)

[This post is part of my Medical Conditions Series.]

It feels like my left testicle is being squeezed and yanked out of place. (And that is not an entirely inaccurate description of what has actually happened.) And yes, it feels just as miserble as it sounds. The pain varies in intensity, but it never goes away or even dips below excruxiating. What started as an occasional mild discomfort after a surgery I had when I was 10 gradually grew over the years into an intense, disabling neuralgia. I’ve had various surgeries over the years in an attempt to deal with it, and each helped a bit for a little while, but then the pain would return even worse than before. Our best guess is that a nerve (or several) got caught in some scar tissue and is getting pinched increasingly harder as the scar tissue hardens over time. Doctors are somewhat reluctant to try more surgery for fear of creating more scar tissue; I am considerably more reluctant than the doctors at this point.

The pain makes any sort of activity difficult. Lying down and resting is tolerable. I can sit for a few minutes without difficulty, but after 30 min the pain will ramp up and will continue getting worse until I lie down and rest. Standing is worse–anything longer than 5 minutes will ramp the pain. I can walk (more like limp) short distances, but anything longer than a block will be slow, painful, and exhausting. Around the house, I’ll shuffle from room to room; outside the house, I generally use a wheelchair. Stairs are very difficult and I have to take them slowly. Running and jumping are technically possible, but I pay a heavy price for them over the course of the following weeks so I studiously avoid them.

It takes an enormous amount of energy to fight off the pain; I am easily exhausted. I typically spend half of my day sleeping, and the other half resting or reading while lying down. The pain makes it very hard to concentrate and my meds fog my brain as well, so I’ve had to abandon both work and school. What little energy I do have, I spend on taking care of my kids and (what remains of) my health.

Sustainably, I can do activities and interact with people for an hour or two each day. On any given day I can do more, but it will cost me–my pain will ramp up as the activity goes on and I will need extra rest over the next few days (or weeks if over-do it). If I’m careful and plan ahead, I can get extra rest in the days before an activity and then splurge for an extra-long activity without the aftermath becoming too severe, but I can only pull that off once a month or so.

Cluster Headaches

Posted on by wink ;)

[This post is part of my Medical Conditions Series.]

I suffer from Chronic Cluster Headaches.

Cluster headaches are the sadistic older brother of migraines. Like migraines, they are their own disease, not a symptom of something else. Think of migraines as a rebellious teenager, and clusters as migraine’s methodical, disciplined older brother that has gone through special military training to learn how to inflict pain. Migraines have lots of symptoms: in addition to the head pain, they cause nausea, noise and light sensitivity, auras, etc. In that way, they’re like the rebellious, moody teenager who acts out in all sorts of random destructive ways. And migraines (like teenagers) act out on an unpredictable schedule–you don’t know how long each migraine will last, or when the next one is coming.

But cluster headaches are different–they’re all about focused, scheduled, disciplined pain–none of that other stuff that migraines mess around with. Cluster headaches are professional, punctual, and polite: they show up at the same time every day, cause excruciating pain in one precise spot behind one eye, repeat for a few weeks, and then vanish until the next cycle which can be months or even years later (hence the name “clusters”). The pain is super concentrated–all the pain of a migraine and more–concentrated into one tiny spot. Doctors consider it the most painful condition known.

For most cluster sufferers, each individual cluster headache lasts from 45-90 minutes, and repeats at the same time every day (or multiple times a day) for a few weeks or months. Lucky me, my individual headaches last for 8-14 hours. While my headache clusters started off episodic as 2 week clusters with 4-6 month reprieves, over time the clusters got longer and longer and the reprieves shorter and shorter until I became chronic. Now I get 1-2 attacks a day, every day, with maybe 1 day a month off if I’m lucky.

Luckily my cluster headaches are not as intense as some other sufferers. My worst attacks have only gotten to an 8 (hyperventilating in the fetal position) on the cluster scale (where 9 is catatonic, and 10 is suicidal). Overall, the intensity of each cycle has gotten less intense as the cluster cycles have gotten longer, as if they’re following some weird conservation of pain principle. Now that I’m chronic and have them every day, they are typically only in the 3-5 range (women who have given birth say that a 5 is roughly the same pain as labor).

Fortunately, I’m pretty responsive to treatment. I take Namenda and high doses of Vitamin D help decrease the intensity and frequency of the cluster headaches. I also use high-flow Oxygen and caffeine as abortives for high intensity and low intensity hits respectively, with Imitrex injections as a backup for any hits that get through.

Depression

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[This post is part of my Medical Conditions Series.]

Most people who suffer from chronic pain also struggle with depression. I am no exception. Intense, continuous, chronic pain is objectively horrible, and knowing that I don’t have any effective way to treat it frequently plunges me into despair.

My depression is tightly linked to my pain. When my pain is (relatively) light, my depression (mostly) disappears. My testicular pain will remain relatively stable for months at a time, and during that time my depression will lift a bit as I settle into a routine to manage my pain. But then my pain will start getting worse. My pain management techniques will be inadequate and my routines will get disrupted as I try more and more things to less and less effect. Eventually, the pain gets bad enough that I can’t even attempt most of my pain management techniques and I go into freefall. The pain increases in a vicious cycle and I can’t see the end of it and serious depression engulfs me. Which, of course, makes the pain even worse. Which then makes the depression worse. Lather, rinse, repeat.

But eventually, the pain levels stabilize, I regain my footing and establish a new routine to manage the pain, and the depression recedes. But it never really goes away. Probably because the pain never goes away. [And the pain never improves, it only ratchets downward. The only times of improvement were when I’ve had surgeries, but those improvements were never permanent, and I’m reluctant to try more surgery.]

When the pain levels are stable, I’m inclined to think of my milder depression as a reasonable and rational response to absurd amounts of chronic pain and the disability which accompanies it. I feel like for depression to get into serious mental illness territory, it has to be more irrational than that. But when the pain levels intensify, when I’m getting worse, when the ground falls away from under my feet and I don’t know how bad it is going to get, that’s when my depression becomes full-fledged.

Medical Conditions Series

Posted on by wink ;)

I have a whole host of medical issues–some are chronic and disabling, and others are episodic or merely disruptive. Over the next few blog posts, I’m going to give a brief description of each of my main conditions and how they affect me. Hopefully, these will help you to see what my disability looks like, how a typical day goes, and why I feel so miserable all the time.

  1. Depression
    I was going to start off this series with Cluster Headaches, but then Robin Williams died and everyone is currently talking about Depression and Suicide. So in an effort to be timely, I’m starting off with this one.
  2. Cluster Headaches
  3. Testicular Neuralgia
  4. Insomnia
  5. “Shockies”
  6. Keloids
  7. Overall

 

Living Online

Posted on by wink ;)

Chronic illness has drastically reduced the amount of social contact I have. I rarely get out of the house, and am quickly exhausted when I do. My sleep schedule is mostly nocturnal and fairly erratic which makes it hard to coordinate with others. Furthermore, the unpredictability of my pain makes me unreliable and makes planning ahead difficult.

I’m also struggling with depression. Which makes me not want to see people. Which results in isolation. Which exacerbates the depression. [Later, rinse, repeat] So I need to do something about that. The obvious solution is the internet–blogging and social media are asymmetric (so it accomodates my erratic schedule) and doesn’t require painful physical activity on my part.

The big problem is that it requires me to write. I’ve never been much of a writer (I’ve always been a *reader*). My pain makes it very difficult to summon the concentration to write. Then my meds further cloud my ability to think. And top it off with apathy (courtesy of the depression) which saps all of my motivation and writing becomes a nearly insurmountable challenge.

Nevertheless, I’m making a concerted effort to live online more: to be active in blogging and keeping people up to date with how I’m doing on Twitter and Facebook. This is the next step in my fight against depression. And I’m hoping you guys will come along on the ride.

About Me

Posted on by wink ;)

My name is Wink Chin. I’m a disabled, Chinese-American, gender non-conforming male. I was born in 1974, married C in 1997, and we are adoptive parents to two kids: P (born in 2003), and F (born in 2005). I have three main topics I plan on blogging about: my health/disability, my former faith, and feminism/gender issues.

Health/Disability
I have a number of ongoing health concerns. The most serious are the disabling ones: chronic cluster headaches, and chronic testicular nerve pain. Then come the merely disruptive ones: insomnia, depression, and episodic nerve pain. Expect to hear a lot of general complaining about my health, and thoughts about disability and chronic illness.

Former Evangelicalism
Growing up, I had an unusually close relationship with God. My whole life, I’ve been a devout Evangelical. I went to seminary and got my MDiv with the goal of eventually teaching in a seminary. But in 2013, my already unusual relationship with God took some wildly unexpected turns. Now I find myself adrift and I no longer know how to describe my relationship with God except to say that we aren’t on great terms.

Feminism/Gender
I feel passionately about Social Justice, in particular Feminism and dismantling the Gender Binary. So expect to hear lots about feminism, gender, and various non-binary topics, with a particular focus on gender non-conforming and transgender issues.