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.

Botox injections for migraines: What to expect

Looking through my much neglected blog, I noticed that people seem to like reading the post about my colonoscopy-prep more than anything else.  Not that I blame anyone for being attracted to that post… pooping fire and then having a stranger shove a hose up your butt is one of those experiences that binds us ALL together.  Plus, as I think we can all agree, poop is funny.  However, I thought a small fragment of people may have read that post because it really provides an unedited, unabashed experience of what it’s like to go through colonoscopy-prep.  Perhaps that was useful to some people.  Hence, here is my experience with Botox injections.

I’ve gotten Botox injections for chronic migraines a lot of times now… hmm… I haven’t counted, but let’s say something like 10 times.  If you are considering getting Botox injections for chronic migraines or some other chronic headache condition, you may be feeling the same way I felt before getting my injections… some combination of scared, skeptical, vain, and cautiously hopeful.  Those are all good things to feel, all of them make sense.  But I think I can take away a bit of the mystery for you and explain exactly what you can expect, and hopefully, a bit of the fear involved will dissipate at the very least.  Actually, maybe the best way to go about this is to tell you what you’ll expect in one section, and then give you some side tips in another section.  Here we go…

Part I: Botox injections 101:  HELLO!  WELCOME to this is what it’s like to get Botox injections!  Woohoo!  Seriously, woohoo, this shit might really help you.  I have two other migrainey friends who have success with Botox injections, and indeed, I’ve come across zero people who’ve had NO positive changes after the injections.  So you’re on a good path here.  First, you’ll need to find a good doctor to do the injections.  This should be someone who is a migraine/headache specialist and/or a neurologist.  People who do plastic surgery work may try to trick you into thinking they can do the injections… ignore them.  Find a neurologist who knows what’s up.  Botox injections given for aesthetic reasons are completely different.  They use much higher doses of the medicine and they do not inject the same muscle groups all the time.  Indeed, people accustomed to giving Botox injections for aesthetic purposes may be dandy with a needle but they are used to purposefully paralyzing portions of the face.  That’s not what you want.  You want someone who understands the underlying muscle groups and how they respond to Botox injections related to migraines.  I can’t stress this enough.

Once you’ve found your doctor, you will need to call your insurance company and bitch for a while.  Most companies will pay for the Botox injections on a trial basis.  They want to ascertain whether or not it works for you, so basically, you have to tell your doctor exactly how many migraines you get a week and how bad they are (you are typically covered by insurance for Botox injections if you have 15 out of 30 days a month with migraines, or thereabouts).  Then after the injections, they ask you again, and basically they’re looking to see any improvement.  Good news is, if the injections improve your migraines, most insurance companies will continue to pay.  Don’t be afraid to fight them for it.  Oh and… don’t tell the insurance companies I said this, but feel free to exaggerate a tiny bit about how much the injections have helped, so long as they have helped.  Insurance companies may try to screw you out of a really useful treatment if it hasn’t fulfilled their standards of what is “helpful”.  As any migraineur knows, ANY amount of improvement is a great relief.  I have noticed that doctors will either tacitly permit exaggeration when you fill out forms, or actively tell you to exaggerate.  But all of this is for the second round of injections, so just remember that for your second appointment.  Back to the first appointment: Assuming you get through the labyrinthine vortex of insurance debacles, you’ll make your appointment to get the shots.  Make sure you contact your health insurance company AGAIN to see if they are sending your doctor’s office the Botox prescription in a timely manner.  Trust me.

BUM bum BUUUUUUUMMMMM the day has arrived.  Go to get your injections with a hair tie if you have long hair.  Wear a shirt that has a wide neck and/or is stretchy, unless you don’t mind changing temporarily (some of the shots are on the top of the back).  Don’t wear makeup, or if you do, bring more with you to the appointment because you’ll need to fix it later.  If you care what your hair looks like after this, take a brush or comb.  If you are nervous, which you probably are if this is your first time, you can certainly bring a loved one along to hold your hand.  The doctors are generally accommodating of this.  I used to bring music along, as well, to calm me.  I no longer need it, but it was really helpful when I was more nervous.

When you get to the office, they’ll take your vitals and you’ll sit in a regular ol’ doctor’s office, sweating your balls or ovaries off and wondering why the scale said such a god awful number.  While you sit there worrying, you’ll probably see a set of needles and alcohol swabs laid out before you.  Hey guess what?  Those are going in your head!  Most doctors set all of this up in advance so they don’t have to refill needles or anything like that.  After all, they have exactly 31 shots to give you and it wouldn’t be fun for you if you had to sit there waiting in between shots for the doctor to suck more Botox out of a bottle into a syringe.  This set up is also used very often because the doctor may wish to use different sized needles.  The needles that go into your face are going to be SUPER tiny.  Not so tiny that you won’t feel them, unfortunately, but waaaay smaller than most needles you have seen in the past, most likely.  The needles they use for your neck and upper back are larger, but fear not, those shots are less painful than the face/head shots.

Finally your doctor will come in and have you assume the position.  Actually, there are two possible positions to begin with: sitting in a chair or laying belly up on an examination table.  Either way, they will then proceed to sterilize your face where they’re gonna inject you.  It’s just a bunch of alcohol, no big deal.  Here’s where they’re gonna inject you:

Botox-injetion-sites-MigraineAll the places where they have the little white dots… that’s where they’re gonna stick you with a scary needle!  Seriously, it’s not that bad.  They start with the front of the face injections, always with the one between your eyes.  Then very quickly, they will move onto the rest of your face.  See the injections labeled “C”?  If you are worried about retaining some movement in your eyebrows (you will definitely lose a little bit of movement no matter what), talk to them about those injections and see if they can get them as high as possible, even at the hairline.  A very good injector will be able to accommodate you.  Here’s what I was afraid my face would look like after Botox injections:

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But really, here’s what my face can do (well only SOME of what it can do) with the Botox injections, which only impact your forehead in terms of facial movement:

V__246B V__459CV__A51E  V__5788 V__938F

See??  I can move things!  It’s not so bad.  Note how I can even move eyebrows individually.  I’m fancy like that.  As for the pain of the face injections, I find them the most unpleasant, but everyone has their “favorites” and least “favorites”.  They are really not too painful.  Think of it this way: when you get a shot, you are generally getting a lot of fluid going into your body.  These injections use very little of the Botox so the injections themselves are extremely quick.

After the face is done, your doctor will sanitize the sides of your head and the back of your head (shown in the middle two pictures of injection cites, letters “D” and “E”.  I find the “D” injections a bit unnerving because they are basically on some muscles that have to do with your jaw.  It’s weird and sometimes you’ll hear peculiar sounds since the injections are so close to your ear, but this is totally normal.  And finally, the doctor will take care of the last injections, the “F” and “G” injection areas seen in the right-most picture.  If you have long hair, the doctor may ask you to put it high up on your head with a hair elastic for D-G.  The doctor may use a slightly larger needle for the “F” and “G” injection sites, but trust me, you won’t be able to tell the difference.  Those area of your body are way less sensitive than your face and head.  In fact, those injections barely hurt at all in my experience.

YOU’RE DONE!  Your doctor will periodically wipe blood off your face (remember: the face bleeds very easily so if you have blood dripping down your face, it’s totally okay and normal… kind of bad ass).  They may also rub the areas where you’ve gotten your injections vigorously, which is also normal.  This is to distribute the medication.  If they don’t do it, you’ll still be fine, you’ll just look a little lumpier for a short time (an hour or two).  Your doctor will now make sure you’re not going to pass out or something, which is unlikely unless you have a needle or blood phobia, and then you will go home (or even to work… now you see why I recommended bringing makeup and/or a brush or comb if you’re going to work).

Okay, now for Part II.  The tips and tricks that doctors may or may not tell you.

1. After your injections, take an Aleve immediately (remember: take Aleve with food, it can be abrasive to your tummy).  If your doctor permits you, you might consider taking a muscle relaxant as well (many migraineurs have muscle relaxants prescribed to them so it wouldn’t be a new medication or anything like that).  I find the Aleve (naproxen sodium) is EXTREMELY useful right at this moment because the injection areas may get tender and slightly swollen.  Not really visibly swollen, but tender enough that taking some preemptive Aleve can make all the difference in your recovery.

2. You may feel a bit woozy, which is not because the Botox has been injected poorly, but just because you had a lot of adrenaline pumping through your veins when you were getting all those injections, and now you’re coming down from that delightful, terror-ridden high.  I’ve noticed that after the injections I’ll just feel a little tired, very much the same feeling I get if I take one Benadryl.  But everyone’s different.

3. Sometimes people get a kind of “Jack Nicholson Effect” from the injections when they’re first given, which goes away in a day or two.  This only happened to me the first two times I got injections for some reason.  Basically the outermost portions of your eyebrows lift up, and it’s kind of hilarious.  To think that some people do this on purpose….

I mean, he’s a stunning man and all, it’s just not an eyebrow look I’m trying to emulate.

4. Whatever, if Jack Nicholson makes an appearance on your face, it goes away pretty quickly.  And then you will need to wait about 1-2 weeks before the Botox is FULLY working.  In other words, if you’re still getting the same exact amount of migraines right after the injections, don’t worry.  You MAY find that the injections wear off a little bit before the insurance company is willing to pay for them again (the FDA has approved Botox injections for chronic migraine every 90 days).  Therefore, be extra careful to avoid your migraine triggers around the time the injections will wear off, and around the time when you get your injections.  Keep your stress levels down, stop huffing paint, that sort of thing.  And if you can schedule your injections to NOT coincide with your menstrual cycle if you happen to menstruate, that is helpful as well, because your hormonal levels go bonkers when you’re menstruating and that in itself can bring on a migraine.  For all the above reasons, make certain you get these injections in exactly 90 days, or as close as possible to 90 days.  You do not want to wait longer because the efficacy begins to decrease.

5. Botox injections sometimes only work a little bit the first time, or not at all.  This does NOT mean it won’t work the second time.  In fact, the injections have had a cumulative impact on me.  At first it helped a little, but over time I went from 3-4 migraines a week to 1 or fewer migraines per week!  Which is the difference between having a life and not having a life… it’s a big difference.

6. You might get tiny bruises from your injections.  Get over it, they’re small and they go away.  😛

7.  People are gonna make all kinds of jokes about Hollywood and facial rejuvenation whenever you talk about the Botox injections.  You will have to appease them and/or tune it out.

8.  You are not gonna look like a freak after getting these injections.  AGAIN: they inject far less into your face than they would have if the injections were for cosmetic purposes.  The only time you’d have to worry is if you have someone injecting you without experience injection Botox for migraine treatment.  So just don’t do that, silly!  The most common sign that the injections have been done incorrectly is if the upper lids of your eyes begin to droop a bit.  But remember, even if this happens (it has never happened to me because I see reputable doctors), it will go away within 3 months time.

9.  Finally, a word of encouragement: Botox injections and their alleviation of migraine pain was discovered when a woman suffering from chronic migraines got injections for cosmetic purposes and noticed that her migraines almost completely went away.  The doctor found that rather astonishing and the company that creates Botox saw an opportunity to tap into the sick community rather than being limited to mostly the plastic surgery community.  Studies were done, positive results were found, and voila, here we are.

If you’re thinking about getting Botox injections because you have frequent migraines, give it a shot (haha, sorry… puns are fun).  Seriously, you should do this.  I feel dumb about how long I waited to try it.

Good luck!

Disclaimer: I am not a doctor, but I am a migraineur, and I have gotten these injections from three separate doctors.  So while I can’t give you medical advice officially, I’m slightly better than “oh I heard that guy my second cousin dated three years ago said Botox injections rock…”.

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.

Migraine Elimination Diet, First Follow-Up

Alright, I’m nearly three weeks into the migraine elimination diet.  I spent the first two weeks trying my best to completely keep the no-no foods out of my diet.  Here are the foods I avoided, but with some slight amendments:

1. Cured meats and processed meats

2. Aged cheeses

3. Chocolate

4. All alcohol

5. Nuts (amendment: I had items with nuts in them, but not very often)

6. MSG

7. Yogurt and sour cream

8. Citrus fruits

9. Bananas, papayas, avocados

10. Broad beans

11. Anything fermented or pickled, or heavy in vinegar (I’ve had light amounts of vinegar here and there)

12. Dried fruits (only a few of them are really triggers but I don’t bother with picking and choosing, it feels like too much work)

13. Any other items with activated yeasts like most breads and doughnuts (Okay I kind of ignored this one, because I grew desperate for things to eat at lunch time… like sandwiches!  Also I completely forgot that yeasty breads were on the list until around week two when I revisited this list)

14. Soy products (I avoided them generally, but had soy sauce a few times… sometimes they add MSG to it, that’s really why it’s on the elimination list)

After the first two weeks passed, I added chocolate to my diet to see what happened.  And I am DELIGHTED to note that it did not seem to impact the frequency or severity of the migraines.  If I’d discovered I couldn’t eat chocolate I don’t know what I’d do… just too depressing a fate to imagine.  I think the next item on the list to test will be alcohol.

I am only into this diet–which is temporary, remember–for three weeks and it has been very illuminating.  Not just because I don’t have to conceive of a life without chocolate.  First of all, it did pretty much immediately lessen the migraines significantly.  I’d been having around 15 migraines a month (give or take) with an increase in frequency and severity around the time of menstruation.  So 3-4 a week.  When I started the diet, I had an 8-day streak without migraines.  On the ninth day, I got a migraine but I unthinkingly ate several items that I shouldn’t have.  I had a shake that contained papaya, a roast-beef sandwich, a pickle, and a tiny amount of chips.  I’m only admitting this level of stupidity in the spirit of helpfulness because it’s really embarrassing to me that I genuinely ate that many things I shouldn’t have… I suspect the culprit was the cold cuts, but I won’t know for certain until I begin adding all these items individually to what I eat.

After that, I had a three-day streak without migraines and got one on the fourth day.  The night before, I had dumplings, which contained soup broth.  Again, an embarrassing admission.  Do not forget this if you are on this diet, or avoiding MSG: SOUP IS YOUR ENEMY!  Unless you make it yourself, that is.  Mass-produced soup broth contains MSG very frequently.  This includes bouillon.  If you’re buying something from the store, read the ingredients thoroughly.  And if you’re in a restaurant, honestly you should just not bother with most soups.  Even if you ask your waiter whether or not they use MSG, they may not know for sure.  The CHEF may not know, believe it or not.  Especially in restaurants where there might be a language barrier.

Another three blessed days sans migraine, then got one pretty late in the day.  It came shortly after I walked in a poorly ventilated stairwell that had just been painted.  I haven’t often been in contact with paint fumes, but the one time I remember prior to this gave me a migraine within about 30 minutes of exposure.

I have not had a migraine in the past two days, and now we’re up to the present!  Potentially very relevant side note: I got Botox injections (the traditional 31-count) five weeks ago.  I did not note any change in my migraines until the day I began the food elimination diet.  However, that was only two weeks after the Botox injections so I can not rule out the possibility that the Botox has been at least somewhat effective.  If I’ve learned anything from chronic migraines, it’s that they are complicated.  I will admit to hearing and reading about a few stories wherein a migraineur found their single magic bullet.  And I am jealous and happy for them, however, most of us should probably expect to find a number of different migraine triggers, a number of different abortive medications that work or don’t work depending on the day, and prophylactic medications that have side effects that’ll make anyone cringe.  It’s sobering.  But I feel more hopeful now than ever.  For the first time since the chronic migraines have began, I took a step for myself and got positive results.  A significant decrease in migraines.  Keep reading with me and maybe I’ll continue to have good news.

Since two of the three times I had the breakthrough migraines I ate something with MSG, I find myself more and more convinced that I have a sensitivity to it.  Here’s the full list of things that seem to pretty regularly cause my migraines.  I will add to it (or not, hopefully) as I continue to blog about this experience:

MIGRAINE TRIGGERS (for me):

MSG (probably); bleach fumes; natural gas fumes; paint fumes (probably); extreme stress; too much physical activity; champagne; hormonal changes around the time of menstruation

Now if you’ll excuse me, I have some chocolate to eat, and this scenario to attempt to create:

Image

How to Deal with the Emotional Ramifications of Chronic Pain

As long as I’ve had chronic pain and migraines (from two conditions–a herniated disc and other issues in my cervical vertebrae and migraines) I’ve chased cures.  Sometimes I’ve tried to figure out exactly what was wrong with me.  Other times I’ve thought, well I can’t fix it but maybe I can at least treat the symptoms.  But somehow it didn’t occur to me until fairly recently that the incessant pain has complicated, destructive emotional consequences.  Major oversight on my part, but I don’t feel too badly about it because it’s also an oversight in the medical community.  With the exception of doctors telling you something like “your pain is in your head, you should see a psychiatrist”, have you had any medical professionals even acknowledge how draining pain can be on your emotional state, or how that can take away from your quality of life?

There are exactly zero chronic pain conditions that are improved by emotional duress.  Stress, for example, is a trigger for many migraineurs.  But let’s take my other pain condition as an example.  I have herniated discs in my cervical vertebrae, some bony spurs, and a bit of spinal stenosis.  The occipital nerve seems to have been irritated (fortunately not damaged or impeded yet), which leads to occipital neuralgia, swelling in my upper back and neck, and frequent muscle spasming.  This has been going on for about 13 years so my muscles are hyper sensitive and in pretty bad shape.  They’ve weakened and knotted.  Many of you are probably familiar with the sensation.  As a result, the top half of my body hurts unceasingly and I have a headache (a regular headache) daily.  When I am having a bad day emotionally, the pain is worse.  Why?  Because muscles tighten when someone is upset, and if you have a muscular problem, that’s going to cause more pain.  Logic.  Stress has similarly negative effects on other chronic pain conditions.  It isn’t that the pain isn’t real, it’s that stress and general emotional duress make it even worse.

You’ll find two sources of negative feelings when you’re dealing with chronic pain: the chronic pain itself and life.  Everyone in the world is familiar with the way life will occasionally take a doo doo all over you.  Someone dies, you lose a job, you’re in debt, someone cuts you off in traffic, someone cheats on you, you find out you’re allergic to chocolate; there are so many things to depress you in life.  But the emotional turmoil that comes with chronic pain differs.  It infiltrates and worms its way into every corner of your life.  Like water freezing inside a rock, it can break you apart as it grows cold and expands.  Chronic pain can ruin your finances, disturb romantic relationships, decrease your sex drive, mess with your ability to work or completely render you incapable of it, make your friends run away from you, your family avoid you, it’ll rob you of your favorite hobbies and your disposition, make it impossible to plan anything, and make you forget what it feels like to get a good night’s sleep.  You lose sight of what pain-free feels like and you may begin to envy, resent, and even despise people closest to you for what they have and how completely unaware they are of their good luck.  And lest we forget the torment of taking medications routinely.  The side effects I’ve experienced include constipation, diarrhea, nausea, vomiting, other flu-like symptoms, mental confusion (I got lost in my own neighborhood…twice), numbness in my extremities, my hair is thinning, fatigue, nightmares, weight gain, I can’t tolerate exercise without feeling like I’m going to pass out or have a heart attack, excessive sweating, dizziness, decreased sex drive, swelling, bruising, the ability to emote as I want to on my face (thanks, Botox)… I’m sure some of you have experienced these side effects and worse.

So who are you when you can’t do what you used to do, feel the way you used to feel, and you find yourself a collection of unpleasant, unsexy side effects?  Have you lost your very identity?  The answer to that is no fucking way.  You’re probably the strongest person you know.  Getting through the day is a miracle and you are tougher with every passing moment.  You might feel like you’ve lost your identity and even your humanity, but really, you’re discovering it.  Or maybe more accurately, you’re rediscovering it.  Don’t give up on yourself.

Alright.  So how do you manage to stay strong emotionally?  I have some tips that I hope will help you, as some of them have helped me.

(Emotional) Pain Management Tips

1.  Get a therapist. Yes, a psychologist.  Work hard to make your insurance company pay, and if you can’t, see if you can get your family or a close friend to help because it is worth it.  It doesn’t mean you’re crazy (but who cares anyway).  Did you know there are therapists out there who specialize in helping people with pain management?  I didn’t until a few months ago.  These are some truly sympathetic people who will believe you when you say you’re in pain (unlike some doctors and friends/family) no matter what.  They will look at you straight in the face and understand that chronic pain impacts every corner of your life.  These professionals will often have tips to help you process the emotional consequences of chronic pain.  You can dump all of your feelings on them instead of alienating the people you love most by unloading exclusively on them.  And I’m not saying don’t talk to your friends and family about your problems, just that it can get to be a little… much for them.  If you have chronic pain, you know what I’m talking about.

2.  Talk to your friends and family about what you’re going through.  Yeah okay I just said all that stuff about not dumping all over the people you love, but sometimes that’s what they’re there for.  You do need to confide in people who know and care about you on occasion.  Otherwise, how will they know why you’re so damn cranky all the time?  Plus, you may think it’s super obvious as to what you’re going through but people who don’t have chronic pain will need a lot of schooling.  They can hardly understand even if they live with you and watch you suffer on a daily basis.

3.  Forgive yourself for being cranky.  No human being could endure what you’re enduring and keep a sunny disposition all the time.  You will snap at someone and it won’t be fair to them.  Okay, you’ll be a real dick.  Pretend you give a shit about me and what I say, and take these words seriously: it is understandable, and you are forgiven.  Now forgive yourself because your self-loathing will only make things worse.

4.  Forgive others for not understanding you.  This one may give you some trouble.  I still grapple with it.  If you have chronic pain, you may expect or at least want your friends and family to understand your difficulties.  You want it desperately.  If only they understood, I’d feel better, right?  Let me try and simplify things for you:  They will never understand.  There is only so much someone can learn from observation.  Experiential knowledge seals the deal and they do not have it, and hopefully will not have it.  You must stop assuming that if you just explain it right, your mom will “get it”.  She may love you, sympathize, and wish better for you but she will have no mechanism for comprehending the true ramifications of chronic pain.  I realize how depressing that is, but if you don’t accept it, you’ll never be able to forgive them for not understanding.  And if you can’t forgive them, you may not be able to let them help you through this.  You’ll be isolated.  Don’t be a fool.  I love Simon and Garfunkel but you aren’t a rock or an island, you need people surrounding you to survive hardship.  So try to think of the situation logically when someone says something insensitive to you.  They can’t help it because they simply can’t understand.  And they probably mean well to boot.  If you find yourself desperate to be understood in an experiential way, look into chronic pain support groups.  Or refer to tip number 1 above and find a therapist who is professionally trained to handle people like us.  Hell, talk to me, I could sure use more people who grasp the tangled wreck that is living with chronic pain.  But no matter what, you will suffer if you don’t forgive the able-bodied outsiders.

5.  Apologize when you’re a dick.  Sure you blow up sometimes, and there is nobody on this planet who could put up with pain day-in and day-out without slipping, but that doesn’t mean the people in your line of fire don’t need you to apologize.  Say, “Hey so-and-so, I’m really sorry I blew up at you.  I was just really upset and stressed and blah blah blah.”  See?  Not that hard.  You aren’t apologizing because you did something that isn’t understandable, you’re saying you’re sorry that you hurt someone’s feelings.  People deserve that.  And after you apologize, don’t forget tip number 3.

6.  Learn to meditate/find your power animal/whatever hippie thing teaches you how to be mindful:  Mindfulness is a very useful tool in dealing with pain.  It might be described as extreme focusing or wiping away the majority of your thoughts for a brief time.  If you have chronic pain, you know that the times when the planets align and you feel better for a short while are very alluring and give you the strength to keep on keepin’ on.  It isn’t mumbo jumbo, there’s no magic involved here.  It’s learning to control your own mind and awareness of internal and external influences.  To an extent, you can learn to regulate which of those influences you deem noteworthy and which are not.  I find myself thinking about pain constantly, so forcing myself to think about the smell of rain on the wind or the sound of an A/C unit humming for a while can often break a cycle of thought that is unhealthy and rather painful.  Think of it as taking a hot bath with some lovely naked people of your gender of choice in a dimly lit room surrounded with rose petals and candles, comfort food in one hand and your favorite beverage in the other… but, you know, for your brain.  And realize that there are a number of ways to achieve mindfulness and only one of them is traditional meditation.  I’m trying to learn “walking meditation” at the moment because that’s the way I often travel here in NYC.  Google mindfulness and see if any methods to it seem appealing to you.  It can’t hurt you.

7.  Isolate what you can do, and do the hell out of it:  I can’t help but draw a parallel between people with chronic pain and people newly retired. Retirees can find themselves limited somewhat by their age and the accompanying infirmities, and feeling kind of down about it (gee I wonder why).  Some of them crawl into a cubby hole with a shitty television and a collection of ceramic cats and wither away.  Others freak us all out by accomplishing feats seemingly impossible for someone “their age”.  My boyfriend’s father retired not that long ago.  He began going to the gym all the time and regulated his blood pressure and cholesterol.  Then he learned how to paint.  WELL.  I mean really well.  I mean that the man has been submitting paintings to competitions and winning.  He is 70 and I think he lives more than I do.  We can all learn from this man.  Chronic pain folk can get distracted by what’s been taken away, but if you are still alive, there is likely something special you can do on your good days.  Do you love cooking and you’re still able-bodied enough to do it?  Well get at it, buddy.  Perfect your turkey meatballs and let all those around you marvel at your culinary splendor.  Bake the world’s best lemon meringue pie (please invite me over).  If that’s too arduous, maybe you can learn how to knit.  My Aunt Nata had to have most of her cervical vertebrae fused and she focused a lot of her energy on knitting.  Obviously the woman has pain issues.  Now she’s a knitting goddess and all of us pretty much wait for the holiday season solely to hopefully receive something she made for us.  She creates her own patterns, and since she has the brain of an evil genius they’re often complicated and mathematically conceived.  Like this one, which she playfully named Heliotaxis Pi Shawl:

Nata's shawl

Scary, right?  Don’t think you’re any different than my super awesome Aunt Nata.  There’s something inside you waiting to come out, something that is completely amazing at ____ and all you need to do is get to painting, practicing, cooking… whatever it is.  This is the time for you to hone a skill, because while chronic pain may have taken away a lot of what you can do, that simultaneously left you with some time to become a borderline guru at something else.  Trust me, it’ll focus your mind something other than the pain, and it’ll help build up your self-esteem.  And maybe you’ll get a scarf out of the deal.

8.  Find a hobby you can do pretty much no matter what. You need something you can do that brings you joy and is possible when you’re in a pretty significant amount of pain, because you can’t always hone your fine turkey meatball skills.  For me at the moment, it’s blogging.  YAAAWN, right?  Well whatever works for you.  Reading, watching tear jerkers, playing cards, knitting, masturbating, talking a short walk in a park.  I don’t know you man, you’ve gotta figure that out for yourself.  But it really can’t be a  physically or mentally strenuous activity.  Save those for the good days.  You need to figure out what makes you happy on the bad days.

9. Find a lazy distraction:  Slightly different than an “easy hobby”, your lazy distraction should be something that requires almost no mental or physical exertion on your part.  Something that takes you for a ride.  Mine is movies, I freakin’ love watching movies over and over again.  My boyfriend works hard to avoid murdering me as I recite the lines to half the movies we watch.  But you know what, I love movies.  They permit me to escape my own personal nightmares.  Reading and video games can accomplish the same thing.  I used to play Mario Kart obsessively until Skyrim came out, then that took over my life.  I’m convinced those games saved me during some dark times.  Never underestimate the power of video games.  But that’s just me.  Do whatever it is you need to do to get out of your head effortlessly, because you need a break and you won’t always feel like doing your hippie meditation or cooking.  I would not recommend using most drugs (e.g., alcohol, cocaine, heroin, meth, etc) for this purpose, seeing as you’re probably on medications that will interact with them.  But I will say that there is something rhyming with…schmariuana…that can safely facilitate the absent-minded state I recommend you acquire.

10.  Don’t obsess.  I am looking at this tip and thinking to myself, EASY FOR YOU TO SAY, BUTTHOLE.  People with chronic pain think about pain all the time.  But why?  Oh, gee, I don’t know… maybe because it’s happening all the damn time and it’s not so simple to forget about it.  Simple is not in the cards for us so we have to nut or ovary up and learn not to obsess about the pain.  It isn’t that you have no reason to obsess, it’s that if you do, you will find it formidable to maintain any semblance of a life.  Don’t you need and deserve to have something beyond the pain?  You have to fight this urge to obsess.  Fight with the hobbies I mentioned, the lazy distractions.  Talk to people about the weather.  Do anything you can.  Just don’t permit yourself to let the obsession feed on itself or you’ll find yourself in a pit of self-pity that–again, while completely understandable–is not useful to you.

11.  Don’t catastrophize.  What an annoying word, catastrophize.  You can thank my therapist for number 11.  Catastrophizing is when you expect the worst possible scenario to happen.  A good example would be if you are going to get Botox injections for chronic migraines and you already imagine that a) they won’t work and b) they’ll render you an expressionless monster for 3 months.  Um.  Not that I’m speaking from experience or anything (insert wink here).  Hi, I am a constant catastrophizer.  Something else my therapist said on the topic struck a chord and turned me into a crying ball of goo on his couch.  I will paraphrase: “Most people who catastrophize become that way not because they’re just naturally pessimistic, but because catastrophes and traumatizing events keep happening to them for no reason at all.  Some people just have bad luck and have an unusual amount of bad things happen to them.”  Well shit, that sucks.  But it sure is nice to hear an authority figure of sorts admit that some people randomly have too many bad things happen to them.  However, if you are a practitioner of logic, you know that there are no such things are curses.  There isn’t an evil force out to get you, either.  It’s the luck of the draw and that’s all, which means that at any moment your luck can change.  But even if it doesn’t, will it make you feel better to assume everything is going to turn out badly?  At this point, I should admit that I often excuse away my catastrophizing by saying that it permits me to emotionally prepare for the worst.  As if bad things happening to me without my having thought about them will cause me to explode into a thousand pieces.  I sometimes worry a little bit too much about my potential emotional reaction to things.  However, I can now at least in this moment admit (and probably totally deny later in a crying fit when I’m having a bad day) that nobody can truly prepare for traumas.  You can even hurt yourself in the process of preparation, imagining how you’ll feel if x, y, or z happen.

12.  Really experience the good stuff.  What I mean is, when something good happens, purposefully think about it so that you don’t take it for granted.  Example: I’ll take a bite of a Cadbury Creme Egg.  I really love those little fuckers, you guys.  I’m sure it’s full of nothing but refined sugar and carcinogens but I can’t help myself.  When I take a big bite, I can either gobble it up and move on, or I can close my eyes and really think about what I’m tasting.  The difference is, in the second scenario I force myself to think about the delight I’m feeling.  I find myself doing this more and more, and it can get embarrassing.  See, I’m a bit of a smell-o-phile and so I’ve begun smelling those flowers they sell outside of bodegas.  Most New Yorkers look at me like I’m a psychopath for closing my eyes, shoving my face into a bouquet of roses, and smiling.  OH WELL, that’s their problem because I need to extract as much enjoyment as I can from things like that.  You and I can’t afford to ignore those opportunities.  So when you slip your feet into your snuggly socks, when you taste a perfect summer peach, when you have a swig of water on a blisteringly hot day, when your lover gives you a back rub after a long day, you be a person who really feels the experiences.  Take it where you can get it, friend.  You can’t afford to be blind to these smaller comforts in life or self-conscious about smelling the flowers at the bodegas.  This way of living will bring you little sprinklings of happiness that you need in between the bad times.

Well that’s it, that’s what I got.  I sometimes follow my own advice, and too often I forget.  All I know is that when I remember to implement some of these tools in my life, it’s easier to deal with the pain.  I wish you luck and Cadbury Creme Eggs aplenty.  Also the caramel ones, those are good, too.

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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