Don’t laugh at my headache, yo

Don’t laugh at someone’s illness. It’s not cool.

I was in a meeting yesterday, and someone opened it by mentioning a stressful email sent around a few days prior, which detailed what needed to be prepared for this meeting. The items I personally needed to prepare were, essentially, impossible for me to do. This I made known to my supervisor and he and his supervisor knew I was stressed out about it.

I began having severe occipital neuralgia problems for the remainder of that week (possibly related, as my neck muscles may have tensed from the stress and strangled the nerve, I do not know; the nerve was already causing me problems for the last several weeks), necessitating two occipital nerve blocks, two days in a row. The second because we missed a spot the first time, which was very stressful. Back to the meeting: at the start of this meeting, someone made a joke about how I got a headache from that email and everyone laughed.

Ha. ha. ha. ha….

Isn’t that hilarious? Isn’t occipital neuralgia so funny, everyone? (blank stare) I know that when it feels like someone is taking a stainless steel dental tool and performing cranial surgery on me with it while I’m awake, needling at the back of my head with it, stabbing me with it, incessantly, non-stop, it makes ME want to laugh. And I am certain if it were someone else that were happening to, and a stressful work situation could have potentially triggered it, oh I’d laugh my ass off about it, right? Riiiiight.

You know what really pisses me off about peoples’ attitude about severe chronic headaches in the workplace? Other than the fact that if I were having ambulatory problems no one would be laughing (and if someone were, I’d have a lawsuit on my hands)?

They think they know what a headache is. That’s why they’re acting this way. That’s why they’re lacking compassion.

Listen. You think because you had a bad headache once you know what a headache is. But until you seriously–and I mean seriously–consider hitting your own head against a wall hard enough to render yourself unconscious because the pain is so agonizing you can’t stand being awake any longer, you do not know what head pain is. Until you are projectile vomiting as a direct result of head pain and nothing else, you are in the dark. Have you screamed from the pain? Have you sat in a corner, shaking? Sweating, gripping your bedding? Was your partner looking at you, terrified, not knowing what to do? No? Then please stop laughing unless I am laughing first, because nothing is funny about this. And unless you are familiar with the state of head pain that doesn’t stop for decades, I’m pretty sure you need to never ever laugh at someone who has to get a series of injections into the back of their skull to stop severe head pain.

Do people change?

First I have to apologize for never following up on my “thrilling” colonoscopic experience.  I can now tell you I do not have cancer or ulcerative colitis, or any kind of lingering severe infectious agent.  They did find diverticulosis, which I’ll enjoy adding to my list of concerns, and I continue to have IBSish symptoms.  IBS being the stupidest diagnosis ever.  Doctors are so desperate to put something into a neat little box they have to essentially make up a condition.  Not that people with diagnosed IBS aren’t suffering–quite the contrary.  Rather, it’s a non-diagnosis.  It’s like saying, “I have no idea what’s wrong with you so I’ll lump you in with all the other people who don’t have diagnoses and we’ll call THAT a diagnosis.”  What a pathetic state of affairs.

I have been altering my diet somewhat to make things easier on my intestines and it’s helped me a little bit… we’ll see how things will progress over time.  All of this from ONE incident of infectious colitis.  Life sure does throw curve balls often, doesn’t it?  For those of you keeping up, here’s a really fine drawing of myself at my current state:

 

me 3But my wonky digestive system isn’t what I wanted to talk about.  I have been thinking primarily about the very life essence of people lately.  What is a personality?  Is it malleable?  Do people really change?  And in what percentages do people change?  Is it that most people don’t change, but a few get “better” and many more get “worse”?  Those terms are pretty subjective, but I bet we could all agree that there are certain “goodnesses” we can all agree on (kindness, love, truth, generosity) and uh… “badnesses” (haha, okay, sorry about how awful these words are) that don’t sound so great to anyone (cruelty, prejudice, greed, hate, violence).  I grapple with these questions because I feel myself changing as I have watched my friends and family change or stay the same as the case may be.  Being pleasantly surprised by the change or stasis is a rarity… usually I find myself disappointed in who people truly turn out to be.

If you are dealing with one or several chronic illnesses, you probably found yourself changing like I’m finding myself changing.  I have some theories as to why… first of all, people learn and grow in life through experience, especially stressful experience.  If you have more than the average share on your plate, or if it’s coming to you all at once, I think it speeds up the natural growth process.  To use an analogy: the human body is exposed to viruses and bacteria from time to time and the immune system (if functioning properly) learns how to defeat them.  Under normal circumstances a person’s immune system doesn’t have to deal with too much at one time, and thus, it strengthens slowly over time.  But what if someone fell into some kind of bacterial virus nightmare vat and their body had to deal with tons of shit at once, assuming they survived that, the body will have picked up a lot of skills in a short period of time.  And the body will have been forever changed.  This analogy is a bit silly and not entirely accurate, but I think my point is made.  QUICK change.  Time-defying change.  Conclusion: chronic illness (or any other serious hardship) alters the natural timeline for personal emotional growth.

Whether or not the changes happening in me are good I cannot say.  I feel somewhat scattered because I’m unfamiliar with myself.  But I enjoy the person I’m becoming.  I seem to be more sure of my self worth.  I care more about other people, particularly strangers, in that I see myself in other people and imagine how they might be hurting.  Perhaps suffering adds empathy, although I don’t kid myself… I know much of this is imagined empathy.  Real or imagined, I consider it a good thing.  I notice more happy moments as they are happening than I used to.  You know how it goes.  You’re sitting around, thinking back on some event from 5 years ago and how great it was, and wishing you’d enjoyed it while it was happening.  Well I think I’m enjoying those things in real time.  Some of the negative changes I’ve noticed in myself are that the stagnancy of others where it exists almost revolts me.  I know I shouldn’t judge people, but I do.  I wonder how they can bare to be so cowardly.  They see things in themselves that they dislike and do nothing.  They revolt against the change because it hurts to change.  At least that’s what I believe.  This is not to judge those who can’t or shouldn’t change things about themselves for many reasons I won’t get into.  But let’s face it.  Almost none of us couldn’t do with a little work on our personality.  We’re just too lazy to put forth the effort.  I got “lucky”–life forced me to change.  All I had to do is say to myself, okay, I’m going to embrace this and see where it leads.  It’s terrifying, no doubt, but I believe finding out new things about one’s self is not bad.  Self-reflection is not just about knowing yourself.  It’s about understanding other people, too.  I believe that because I believe we have more in common with each other than we’d like to think.

Conclusions… hm… can people change?  Yes we can fucking change.  People are full of shit when they say, “people don’t change.”  Or “people never change.”  A more realistic statement might be, “people can change, but it is painful and difficult.”  Or, “people can change but they have to want to change.”  Which is why you can’t make your partner stop throwing their dirty socks on the living room chair no matter WHAT you say.  You know, until they realize it’s gross.

If you want to be different, don’t give up.  Keep trying.

On Medications (good advice for everyone)

I recently read a story about someone with occipital neuralgia (a chronic pain condition that has to do with an irritation of or damage to the greater or lesser occipital nerve) whose previous neurologist prescribed them Cymbalta, which is a seratonin-norepinephrine reuptake inhibitor (SNRI).  This person took the medication for two years before seeing another doctor who informed them that Cymbalta generally treats depression.  She then proceeded to go off the medication without researching the withdrawal problems.  I did some research and found that Cymbalta has been approved very recently by the FDA for treatment of musculoskeletal pain so I suppose the neurologist may have been at the bottom of the barrel, trying anything.  It’s possible.  Nonetheless, it seems like a slightly irresponsible medication to prescribe to someone without depression problems or arthritis.  I have to say, however, that I wasn’t surprised–doctors prescribe medications inappropriately all the time.  The shock on my end came from the ON sufferer’s fury at the doctor–she never bothered to look up what this medication was for.  Two years of shoving pills into her face, and she had no idea what she was taking.

There may have been a time long ago when doctors were to be uncompromisingly trusted but we no longer live in that world.  We live in a world where there are a few exceptional doctors whose strength allows them to navigate through the nightmare of health insurance dodging payments (which hurts them just as it hurts us…well not just as it hurts is, but it isn’t a great situation for them), and watching people suffer while trying to do their job, working exceptionally long hours in many cases, while still maintaining a sense of determination and sympathy for their patients.  Others are worn down by the present system, which punishes the weak.  Still others never cared to begin with and are only doctors because mommy and daddy told them to do it because they’d make lots of money.

A precious few of us manage to find the good doctors.  I have found a couple after years and years of searching.  Regardless, any time one of them thinks I should try a new medication or go off a previous one I ask a lot of questions.  I don’t give a shit if they’re rushed or irritated by my questions.  This is MY FUCKING BODY.  I’m not going to just eat pills because a doctor tells me so, I’m going to take them if and when I feel satisfied that it is a good idea.  This is in no way insinuating that I think I know better than any doctor about pharmaceuticals–I don’t.  However, I am an intelligent, proactive person and know I am capable of understanding what words like “contraindication” and “side effects” mean.  Frankly I don’t know anyone with a chronic illness or pain condition who isn’t intimately familiar with the various pharmaceutical terminology well enough to posit informed questions regarding medications they’re taking.

I think you’ve figured out where I’m going with this.  Be informed about what’s going into your body, whether that be another person’s phallus, food that you’d prefer not be covered in pesticides, or potentially life-altering medications.  Nobody–including your doctor–cares more about your body’s well-being than you do. Be. Your. Own. Advocate.

A (Somewhat Partially) Dreary Opener

Hello everyone and no one.  This is a blog about my life and your life.  It tells stories of truth and pain.  It is and will be, in a word, distressing.  Or maybe it will be a comfort.  Either way, it will certainly provide a sprinkling of reality and a mirror.

But first, some thrilling biographical information about myself!  I am a bisexual white [edit: now mostly] atheist woman in her late 20s [edit: now early 30s] living in the East Village.  I reside in an apartment with my intelligent, funny, sympathetic, kind, gentle, deliciously dorky, and infinitely patient boyfriend/soultwin.  Recently, Mr. Soultwin and I welcomed two crazy little kittens [edit: now they are giant monster adult cats] into our lives that have given a simply joy and not so simple depth to our lives–they are Bailey and Stevie Wonder Kitty, III, Esq.  I went to a wonderful liberal arts college that provided me with an essentially useless degree [edit: it wasn’t useless, it just didn’t make me any money… damn, people are assholes in their 20s, right?], and then went onto graduate school so that I might gather some more useless degrees [yeah…], which led to a great deal of student loans I will likely never be able to repay in full [still true] and a decent job that I am intensely grateful for in this ugly economy [much more grateful now than before, since time has given me some perspective, and I got a promotion since then].  An injury has left me with serious chronic pain in the form of migraines, occipital neuralgia, and arthritis [since then, I learned I have rheumatoid arthritis, in fact, and fibromyalgia, WHAT A FUN LIFE!!!!]. And yet, as I said, I live with my soultwin and my guess is most people don’t even have the opportunity to meet theirs, let alone spend time cuddling late at night with them in a shared bed. So things ain’t so bad, y’all.

There, now we’re practically best pals.  You know all the things about me! [not really] From now on I will simply write whatever comes to mind…

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