Chronic Illness and Guilt

I spend a lot of time feeling guilty about the consequences of my various illnesses. My boyfriend and I quarrel a lot lately–there’s tension because I need a lot of help and I’m bitter about it, I’m very moody because of the pain and not easy to be around. I feel like a financial burden to my family. I miss a lot of work, sporadically. It’s difficult to plan events with friends and family when I’m having flares, and I never know if a migraine will arise. My boyfriend and I can’t travel much together because of my limitations, nor can we engage in activities that might be tremendous fun if not for my body… like rock climbing. People around me see me suffering and I can see it hurts them. This might be the worst causes of guilt and I don’t think there’s anything that can be done about it. But if you’re loved–and we should all be so lucky–there’s no way around this.

None of this is my “fault” exactly, but it is. It is my fault, I’m the one causing all of it somehow. Right? This is the guilt I believe every person who’s chronically ill is tormented by to some extent. If you have good support from people around you, I think it is survivable guilt. I’m lucky; my boyfriend often tells me he’s happy to help me and understands none of this is my fault, and I can tell he actually means it. My parents always offer “any help” they “possibly can” and never blame me. But I still feel guilty. What do I do with all of the guilt?

Step 1: Acknowledge it: I feel guilty. I feel really, really guilty because I’m sick and it has all these consequences, and I don’t like them. I feel like a monster!

Step 2: Feel it: UUUUGHHHHHHHHHHHHHHHHHh

Step 3: Distraction/comforts when necessary: Netflix binging, going out to the movies, pizza, work, games, teasing the cats with their favorite rainbow wand

Step 4: Rationalization: Okay, I’m sick. None of this is actually on me. I didn’t purposefully make myself sick, or do anything to get sick. And I’m only seeing ONE MILLION doctors and taking meds, I lost weight because my doctor told me to, I’m seeing a therapist to work on stress management, blah blah blah. I’m trying to be my own best friend here (ew). I’m not perfect but damn it, I’m doing a pretty good job. I’m even still working, which isn’t easy. So I might feel guilty but I don’t deserve to feel guilty.

Step 5: Continue to feel guilty: Wait, what? DAMN it. I’ll try again tomorrow.

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Stand Together, Be Strong

After our election, many of you may be scared. I am scared. I love you and care about you, my friends with chronic health problems. This impacts us directly. It impacts so many people.

I am fortunate because I work full time and have health insurance through my work. I know how lucky I am to be able to do this. Many people are not in that position. If you have health insurance through Obamacare, you may be wondering what your future looks like… I do not know the answer to that question. You have every right to be scared and depressed.

However, I can tell you that our country is filled to the brim with people who are not satisfied to sit around while you get your healthcare taken away from you. People who are scared with you. Depressed with you. And absolutely, unabashedly motivated. People who are gearing up to work for you. Work, Work, Work.

While many have been ignored, trampled upon, mocked, belittled, set aside, ostracized, demonized, and marginalized…

While many have fought for Civil Rights, only to fear having them stripped away…

While many have been climbing, finding themselves only halfway up, and wonder if they will be thrown off the wall…

No longer will we be silent. We won’t be quiet. We won’t be tired. We won’t be afraid for long. And no onlooker to these wrongs will stay immobilized. I look to the good people I know and every single one of these people is brimming with an energy I have never seen. Buried beneath the despair and exhaustion that comes from days of nausea and sleep deprivation, waiting to be directed positively towards a society where its citizens don’t have to worry about their healthcare. Where its people aren’t afraid because of the color of their skin. Where members of its community can express their love for one another freely, without prejudice. Where we embrace difference and newness instead of fear it, remembering our founders and ancestors. Where we cherish and care for our surroundings. Where genders are treated equally. Where people who serve this nation are honored. And where money buys things, not power.

This. Will. Not. Break. Us.

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:

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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.

“Then the LORD answered Job out of the whirlwind…” (Chapter 38, Book of Job, King James Version)

Friends, I am displeased to inform you that the gastrointestinal issues I mentioned in my previous post have returned in a slightly varied form.  I consulted with a gastroenterologist who believes I may have ulcerative colitis (UC).  To the two or three people who read my posts, you will know that I already “enjoy” a few separate chronic health issues already and, moreover, my most recent joy in life is cooking.  If I do have UC I will likely have to restrict my diet even further than I have been and it will be potentially physically and certainly emotionally devastating.

When I was but a young thing in college I took a class on the Book of Job. This came not long after dealing with a few personal tragedies in my life (one of which was the death of my Aunt Ellen; I was very close with her).  How obvious, looking back, that I was grappling with why good things happen to people for no apparent reason and mysteriously decided to take a class in the religion department (while a music major) that would focus solely on the story of a good man targeted by God not for being a bad man, but simply to test his endurance.

If I am diagnosed with UC, will I have ANY moments of relief between that, chronic migraines, constant upper neck and upper back pain, and occipital neuralgia?  Job was a fictitious person as far as I’m concerned, plus, he eventually buckled and cursed God in the end.  Otherwise, God wouldn’t have appeared “out of the whirlwind” to give Job a good long tongue lashing for being such a whiner (c’mon, God, you had Job sitting on a pile of poo, covered in boils, all his wealth taken, all his beloved family killed, his livestock destroyed… God wasn’t a very forgiving God in the Old Testament, was He?).  Still I think of Job.  Do I think it would take someone so long to curse God in the real world as it took Job?  No.  But I do think it’s telling that anyone could have conceived of such a person, even in a story.  There was someone somewhere who believed a human being could endure inconceivable tortures.  Endure with a continuing love for the thing most important to that person, in this case, God.

I will endeavor to endure for my own reasons and continue to love the things and people I have loved.  At this point I can only endeavor.  But the desire to endure is a beginning.

Tomorrow I will do a Nuprep cleanse (it clears out your bowels… yaaaaaay…) and on Monday I get a colonoscopy, when I will find out whether or not I am looking forward to UC.  I am hoping to have some tips to surviving the Nuprep, which I will probably not be able to do until late Monday or Tuesday once I have news.

I should be upset, but when I think about it, I’m pretty fucking happy…mostly

I haven’t been blogging much lately because a little over a month ago I was in the hospital with an intestinal bug.  The symptoms were akin to (and may very well have been) an E-Coli 0157-H7 infection.  They didn’t bother taking a sample of my uh… well, you know… so they don’t know for certain what it was.  Suffice to say it was super horrible and gross and I was in the E.R. for 13 hours.  It took a week before I was able to walk around without being bent over, and two weeks before I was vaguely close to normal again.

Last Thursday, I started coughing.  And coughing and coughing.  And suddenly my throat is on fire.  Friday morning I woke up with a sinus infection–a really bad one.  Are you kidding me, life?  What the hell.  Oh and P.S. this infection has triggered two migraines so far, one of which I’m getting over right now.  I have a job.  It’d be nice if I could keep it.

Okay I am upset.  I feel a little targeted by the fates lately.  I just want to go to work, clean my house, cook meals, play pinball, and go to fun places in the East Village in peace without my body incessantly fucking me.  Stop FUCKING me!

On the other hand I really can’t deny that I feel strangely happy when I think about those same things.  I know the sinus infection will go away and I will enjoy my everyday activities more when it’s over.  When I was over the intestinal bug I was so much happier, really enjoying things, even cleaning.  Who ENJOYS cleaning other than maybe someone with mild OCD, where it doesn’t interfere with their life?

This is a hidden benefit of having chronic illnesses, or in this particular case, just being some kind of magnet for illnesses.  You appreciate shit (sometimes literally) that other people do NOT appreciate.  They don’t even notice.  They drag their feet when it’s time to do chores, you get excited that you’re having a good day and grab a vacuum.  When it’s time to pick up something from the store, you’re happy and strangely proud to do it.  They complain about cooking a meal whereas you’re grateful you’re able to handle it today.

I think that’s how cooking went from being something of a chore to a genuine joy in my life.  When I cook, I take out a cutting board and my favorite knife, placing the necessary ingredients for the meal around me in a ritualistic way.  I enjoy looking at the ingredients because I took time to select the highest-quality items I could find.  I show my boyfriend particularly colorful vegetables or fruits and say, “Look, isn’t it marvelous?!”  I try to create a piece of edible art.  I take care in the cooking process and I try to present the finished meal in a beautiful way, because life is full of enough ugliness.  When the meal is over, if it was successful, I make certain to write down the recipe or write notes to myself in the recipe if it wasn’t mine so I can reproduce that experience in the future.  I also take pictures of things and throw them in a folder called “Food Porn”.  (Below is a pan-seared Alaskan sockeye salmon, steamed asparagus with fresh garlic, and brown rice with tarragon and cilantro)

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Never in a million years would I think I’d be the type of person to give a shit about that stuff.  Only a few years ago I would have rolled my eyes at myself.  Sometimes I think if present me met past me, present me would tell her to fuck herself for not appreciating what she had.  Unfortunately I don’t think telling someone to fuck themselves really opens their eyes to the ways they’re lucky in life.

I’ve said this before in a few different ways and I’ll say it again: Life sucks so much of the time.  It sucks and sucks and sucks.  Nonetheless there are things worth living for.  Loved ones, pinball, cupcakes, a perfectly prepared meal.  Whatever it is that floats your boat, hang onto it for dear life.

And I’ll tell you something else: I don’t think a person CAN really appreciate something–really, really appreciate it–unless they can’t have it or do it whenever they want.  I’m unlucky in health, but I’m only 29 and I know what the word gratitude means.  I think I learned that pretty early.

Making Chronic Migraine Botox Injections Funny

I went to have my second round of Botox injections today for the chronic migraines.  As I was sitting in my pretty paper gown in the middle of a room facing a wall with a moderately terrible painting on it and a piece of paper listing a number of dangerous narcotics in utter silence while the doctor and his assistant prepared numerous needles behind me, I thought, this is fucking terrible.  So I said something like, “Does anyone ever play music in here?  You need music in here.  The silence is unbearable, it’s like this ominous, weighty silence and you can almost feel the needles coming.”  The doctor chuckled and said, “Well, I can hum or whistle for you if you like.”  Then he actually started humming and that was just unacceptable.

I kept thinking, I have my MP3 player RIGHT over there on the counter and it has tiny speakers on it.  But I was feeling afraid to ask if I could use it.

This sort of attitude is kind of my natural state–to have an idea that might be great, but slightly off the beaten path, and therefore I feel embarrassed and I don’t say or do anything about it.  I’m not sure where this lack of self-esteem comes from, but I pushed through the shyness this time and much to my surprise, said, “My MP3 player has speakers!”  My doctor said, “…well do you WANT to play some music?  You can play some music.”  And then he shrugged.  SUCCESS!  This led to a long discussion as to what I should play.  He wanted me to play opera or a tango, but my MP3 player isn’t loaded with his favorites, so I ended up picking “Mars” from Holst’s The Planets (here’s a good recording of it by the Berliner Philharmoniker, Herbert von Karajan conducting: https://www.youtube.com/watch?v=DhbhLtEju2A, it’s only 7:22 long… listen at a fairly high volume for the full effect).  For any of you unfamiliar with the piece, it’s intense, as Holst was trying to capture the essence of the Greek gods associated with various planets–in this case, Mars is associated with Ares, the god of war.  So the music evokes a sense of impending apocalypse, terror, energy, power… it was a really, REALLY funny soundtrack for such unpleasantness.  Fitting in a the darkest possible way.

Rather than trying not to cry or freak out like the first time I got the injections, this time, I was trying not to laugh.  It still hurt and occasionally I would focus on the music or pretend that the next injection site was definitely going to be the least painful one.  Point is, the music made the experience entirely different.  See if you can get your doctor to let you play some music while you get the injections done, or any procedure you don’t enjoy that happens while you’re awake.  It doesn’t have to be funny; maybe you want to hear something soothing, or some heavy metal, rap, tango, old-timey country, whatever you like.  But I recommend going the dark-humor route.  See how not upset I am only about 30 minutes after the injections?

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Cooking with a Disability. I: Reasons for Cooking

I live in the East Village, so it’s like, BAAAAAAH I can eat anything I want by going to Delivery.com or Seamless.com or Grubhub.com and just find it.  So I did.  And surprise of surprises, given my low salary and the high cost of food around here combined with my never-ending medical bills, I became totally broke.  And gained a lot of weight.  And my blood pressure went up.  Simultaneously, I became aware that MSG in moderate to large quantities was a major migraine trigger.  It was a logical conclusion that I should begin cooking my own meals.  When I lived alone I used to cook for myself, but that usually entailed making pasta and then putting butter and grated Pecorino Romano cheese all over it.  Yes that is really delicious but it isn’t exactly healthy (but good for a treat…).  I thought, okay FINE fine fine I’ll start cooking.  And it turned out to be one of the more pleasure-giving experiences of my time as of late.  Also I lost a few pounds.  Here is a picture of some homemade chicken penne soup (with homemade broth straight from heaven, I swear):

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If you are disabled in any way, it is likely that cooking and/or baking will be a godsend to you.  Here are some (hopefully) convincing reasons why:

  1. It gets you physically moving and the blood circulating.  If you are immobile a lot of time, you know just how important moving around for a few minutes can be.  You’ll avoid blood clots and fight off muscle atrophy.
  2. It forces you to do something, thereby increasing your self-esteem and decreasing your feeling of being a useless slug.
  3. It affords you an opportunity to express yourself artistically (e.g., “I added an extra tablespoon of tarragon to the recipe and it’s delicious!  I’m a GENIUS!”).
  4. You will show up your able-bodied or -minded friends who are too lazy to cook or bake.
  5. It will almost always be more healthy because you have more portion control and a say over exactly what goes into your food.  This can’t be understated.  If you have an emotional issue, there are a number of reputable studies suggesting that a healthy diet (full of fruits, vegetables, lean proteins, grains, and few preservatives) help maintain your blood sugar levels, thus decreasing mood swings.  It will also help your body physically in that better foods in your body give it better nutrients, which will make your body work like the finely tuned machine you want it to be.  Everything from your digestion, cholesterol, immune system, and cardiovascular health can be dramatically altered by what you eat.  So essentially eating well and knowing exactly what you’re eating gives you a better shot at being the healthiest you can be with whatever physical condition you have.
  6. Over time, even if you cook with a lot of healthy produce like fruits and veggies, it will be less expensive than takeout unless you only eat fast food (which you really shouldn’t do often for health reasons anyway–you know I’m right), which means you’ll save money for those endless doctors’ bills… ugh.
  7. If you live with people, they will love you forever for it.
  8. If you don’t live with people, you can freeze leftovers and have easy meals to warm up in the future.
  9. You will taste more of what you eat and feel more connected to your meals, which adds joy to life.  I’m depressed often.  Squeezing out a little bit of happiness when I can is very important, and if cooking has this same impact on others as it has on me, please do it!
  10. Need to lose weight?  No problem.  Need to gain weight?  No problem.  Need to have a low-sodium diet or a gluten-free diet?  No problem.  Yaaay you get to control what you eat and I can tell you now from experience that it isn’t actually difficult to make low-fat food and low-sodium food taste amazing if you have the right spices, and I really mean that.  You can learn how to finagle your food to taste like normal food when, in fact, it’s gluten-free hippie low-fat low-salt food (or whatever you need).  And there are a number of ways to gain weight without eating unhealthy fats too often.  Nuts, avocados, and many fishes have good fat.  You can also buy oil to cook with that contains mostly or all good fats (my favorite is safflower oil, which is pretty much tasteless and can be used with nearly anything, or sesame oil for Chinese meals).  That’s something well worth looking into and there are many wonderful websites that list healthy oils and unhealthy oils.  This way if you’re trying to lose or maintain weight, you consume mostly good fat, and if you are trying to gain weight, you can do so with healthy fats that won’t clog your arteries.
  11. If you mess up, who cares… seriously, who cares?  It’s a learning process.  But if you make something amazing, totally take all the credit and force feed all around you so you can bask in the glory of your accomplishment.
  12. You don’t always have to “cook” to prepare a meal for yourself.  Once a week I have what I call a smorgasbord night where I just chop up some fresh organic fruits, vegetables, some yummy cheeses, some local bread, homemade salad dressing (not hard, I swear, I’ll post the recipe sometime) and some honey or preserves.  It’s easy and it’ll make you feel fancy.  See below for a plate of one of my last smorgasbord nights (pic of the bread not included).  This is a very filling and satisfying meal and you can throw in whatever you want, including any kind of pre-made salad or pickles or whatever.  Hey it’s your smorgasbord.  You do what you want!

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I hope this will convince some of you to embark in the glory of cooking for yourself, become empowered, and take control over something in a healthy way.

P.S.  Don’t worry, I still order from Delivery.com sometimes.  I have to have Iggy’s Pizza on occasion or I might die.