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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Neverending Story

When the Rasuvo (methotrexate) injections began working maybe a year and a half ago, some naive part of me decided I was “done” with having to deal with medicating rheumatoid arthritis. Well THAT was very stupid.

I am feeling pretty fucking depressed right now. I’m trying to allow myself to fully feel it so I can move through it and not be bitter or feel pity. The methotrexate isn’t working much anymore and I’m probably going to have to try another medication for the RA soon, presumably a biologic. Many other RA people would say, “DUH, GENIUS! That’s common!” but I really thought I’d hit the jackpot with methotrexate. It was working so well for me. I was feeling pretty good… good enough to work full time and almost function as if I were a 70-year-old in amazing shape for her age (I’m 33). Instead of this crap. C’mon. I feel really dumb right now for not realizing that luck runs out for everybody. I’m not special! Now I’m scared about trying new meds, the side effects…. Biologics aren’t fucking around. But neither is my immune system right now. It’s pretty angry at me.

So my body hurts a lot, everywhere, it’s difficult to deal with the pain emotionally. It’s just like… I can’t get away from it and I would never hurt myself, but when people with severe chronic pain hurt themselves, I understand it. And I think that’s the key to empathy. Don’t be afraid to face these hard feelings and say them out loud. This kind of pain will make you crazy if you’re not careful–who could be blamed?! I think I’ve only retained some shred of sanity because the sun came out a couple times (I adore the sun… warmth on my skin is like an elixir on me), and I had a couple hours here and there of lower levels of pain. But then last night I started getting a severely sore throat. It seems I have some kind of upper respiratory infection. Are you KIDDING me right now?! So I had to take off work. That makes me feel like an asshole. I keep feeling guilty for being sick. Not helpful. A few days ago I had to take a day off work because I got FOOD poisoning. It’s like some bad-health demon is following me around lately… get away from me!!!! All my chronic health problems are ENOUGH.

It is painful to type. This is a bummer because writing and keeping connected both help. I live through social media much of the time since I never know if I will be able to go out when I’m sick. My forearms are really shitty lately. I need this space.

WELL. I guess here marks a new chapter, and when I start on whatever new shit drug I’m taking I’ll document what that’s like. Hopefully it’ll be of some help to somebody, if not to myself.

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.

I bought all the things… oops

How do you “thrive” with rheumatoid arthritis when you are having a severe flare up, crying several times over it because you’re freaking out wondering how you’ll go to work, irrationally lashing out at loved ones, and periodically furling your brow and trying not to vomit because of the overwhelming, mind-numbing, searing pain all over your body? BUYING STUFF!

I am a psychological bore. When things seem “out of control” to me in one way, I try to “control” them in another way. I assume my therapist goes home and seriously rolls his eyes at me after our sessions. Today I spent like… $200 on stuff like storage bins and hat boxes and such from the Container Store and Amazon.com.

You’re welcome, capitalism. You’re welcome ‘murica.

Everyone has their coping mechanisms. Most of the time, mine are really healthy. My desire to organize things when I’m really upset is generally healthy but when I’m REALLY upset it starts to pour off into a serious desire to buy things and then organize… and since I have no money to speak of, this isn’t the best thing ever. But I will say that my partner and I are in legitimately desperate need of the items I bought (including the hat boxes, believe it or not, seeing as I have about 12 fine hats and 0 hat boxes to store them in, which means there are hats laying around and my partner does not like this… nor do I, it’s cumbersome). Okay maybe I did not “NEED” need to get the vintage hat box from Knox Hats to store my favorite hat (I live in NYC and that’s a NYC-based company, isn’t that a gross, hipstery purchase) on ebay but the other cheap hat boxes I got from the Container Store were totes necessary.

Normally when we reorganize and stuff… it involves my… kind of consulting my partner. Seeing as he LIVES here and all. That’s the polite thing to do. 😛 But this time I just bought the stuff myself. I wanted the instant gratification. I didn’t want all the back and forth and what about this color and that texture crap. Hopefully he won’t be mad. Seeing as we have similar tastes and it’ll end in things looking organized and such, my guess is he’ll be happy. Right? Meh? Ut oh.

Methotrexate via auto-injection pen (Rasuvo) for rheumatoid and/or psoriatic arthritis: What to expect (what a THRILLING article title!!!)

I love you, fellow rheumies and psoriatic folks! And I love not getting sued. For those two reasons, here’s the official big huge monster disclaimer: I’m someone who has self-injected a lot and I have rheumatoid arthritis. Also, I can write and my brain is not terrible, which makes me want to share my wisdom with you. However, none of this makes me a medical doctor. I AM NOT A DOCTOR. There is never anyone who can replace a doctor. Make sure you run my recommendations by your rheumatologist. If you live in a more rural area and can’t see a specialist soon, check in with your primary care physician. And if you are really pressed for time don’t underestimate the E.R. or nurse practitioners.

 

Okay so first of all, I have no idea if methotrexate is a medication that will work for you; right off the bat, you have to keep that in the back of your mind. But if it is something that helps your rheumatoid arthritis (heretofore RA), I can’t recommend the injection alternative more highly. Why are you taking those stupid pills, stupid? Stop being stupid, stupid!

Seriously. Pills SUUUUCK.

Methotrexate is, to many, a chemotherapy medication. AAHHHHHHH SCARY SCARY SCARY SCARY. But for RA patients it’s a magical medication that can potentially keep the arthritis away. We take a markedly smaller dose for RA and it works as a DMARD (disease-modifying antirheumatic drug) by knocking down your immune system a bit, taking it down a notch. Like, HEY PAL, you’ve gone too far! CALM DOWN THERE, immune system. Methotrexate starts the immune system suppression, and that helps ease the RA symptoms quite a bit for many of us–me included. Unfortunately, like I said, it’s a chemotherapy medication. Therefore it has chemo side effects, even in the smaller-than-chemo dose. Hair thinning/loss, nausea/vomiting, diarrhea, skin sensitivity, ehhhh what else has happened to me… my libido has been weird, my moods have been funky… it’s been a delight! If you take folic acid, a lot of the side effects are short-circuited (thank you, folic acid). I.e., if your doctor doesn’t prescribe folic acid alongside your methotrexate, there is something VERY wrong with your doctor and they are just a mean poopy face and you need to find another doctor in my opinion. Are they trying to torture you?! Girl, your hair is falling out, you’re doodooing all over the place, and your doctor isn’t giving you the antidote!

Even with the folic acid, you still get the gastrointestinal side effects, I’m afraid to say, unless you nut up and get yourself a needle. DO IT. This is the route I went: Rasuvo. I have a very sensitive stomach so I desperately wanted to avoid as many of the gastrointestinal symptoms associated with methotrexate as possible. Also, instead of having to take the medication several times a week or every day, you only have to take it once a week. Bonus. As soon as I learned about this, I thought, “What am I waiting for?” I also thought, “…wait, am I about to willingly stab myself every week?” The answer was, of course, yes. Chronic illnesses make you do peculiar things.

May I introduce you to my good friend, Rasuvo. Say hello, fella!

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You can get syringes and measure out methotrexate yourself, but Rasuvo is a pre-measured (7.5, 10, 12.5, 15, 17.5, 20, 22.5, 25, 27.5, and 30 mg doses only) auto-injectable pen for lazy fucks like me (and maybe you). Also, fool-proof. You have to do so very little with this thing. It’s hard to mess it up.

That little yellow tulip-looking doohickey on the bottom is a needle cover so you don’t accidentally stab yourself prematurely (you take it off later). Below, see the box it comes in; I have cleverly placed sterile alcohol prep pads over all my personal information so you don’t come to my apartment and try to murder me or steal all my Rasuvo, you scoundrel:

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If you turn the box to the side, you will see some very important information: THE EXPIRATION DATE… do NOT forget to check this.

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It is also listed on the side of every single individual pen:

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Isn’t that handy? Note that my expiration dates on the box and pen match: June 2017… GOOD, that’s a relief… it’d be a little weird if they were different, and I’m not quite sure what it’d mean… When you open the box, you will see FOUR pre-filled injectable pens nestled very carefully inside, and there will also be a little folded up packet of information.

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This little packet will be FILLED to the brim with terrifying information about methotrexate. Read all of it because it’s super important. This medication isn’t fucking around. For example, I discovered that while taking this medication, some people have sun sensitivity. That’s putting it mildly. I have a moderately rare condition now where I break out in hives if ever I get a sun burn. In other words, I am ALLERGIC TO THE SUN. THANKS, methotrexate! Actually, I am thankful, because this side effect is better than RA! Wheeee!!!! Life sure is weird now.

GETTING READY TO INJECT:

  1. Inspect the pen: I read everything on the pen out loud, even though I feel stupid doing it… Make sure the pen is filled with the right dose (I say, “12.5 mg, check”); Make sure the medication isn’t expired (“expiration date June 2017, check”); Make sure medication looks clear and yellow, which is what liquid methotrexate is supposed to look like (“clear, yellow liquid, check”). And I do a visual over the pen to make sure nothing is obviously broken/cracked/whatever.
  2. Wash your hands.
  3. Get to a comfortable sitting position.
  4. Clean your thigh with alcohol prep pads (or you can use rubbing alcohol, I just find the prep pads easiest; again, I am lazy as shit).
  5. Pinch the fatty portion of the top of your thigh. I have taken a picture of the portion you are supposed to pinch. Bailey the cat is here to lend some support. He’s a helper!

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At long last, all your prep work is done and you’re ready to stab yourself in the leg. Aren’t you excited?! Pull the yellow tulip looking thingy off the bottom of the pen to expose the needle (DO NOT touch the plunger/top of the pen yet!!!); the exposed end looks like this:

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Yay that’s about to be jabbed into your precious, innocent leg! Alright, press that end against the part of your leg you’re pinching, nice and firmly, gripping the pen in your right hand as if you were holding a joystick, with your fingers wrapped around the pen and your thumb free to get ready to press the plunger on the top. Do the thigh pinching with your left hand between your index finger and thumb, assuming you’re right-hand dominant (if not, do the opposite). Then when you’re ready, keep that pen pressed tightly against your thigh, and press your right thumb down onto the plunger. Hold the pen firmly against your thigh for FIVE seconds–count them out loud (ONE…TWO…THIS IS STUPID–FOUR–I BET IT’S ALREADY DONE…OKAY IT’S OVER). You don’t have to hold down your right thumb the whole time, just hit the plunger once, but it’s important you firmly press the pen down against your thigh because you’ll see the needle is inserted into your skin, and it’s your job to keep it there, dude. Don’t fail in your one tiny task!

Once the five seconds is up, the needle removes itself from your skin, actually. Pretty rad. You can remove the pen from your thigh now. It’s now your job to dispose of the pen responsibly because it still has some death juice all over it. Don’t just throw it in the trash like an asshole; you don’t want little babies or animals licking it and getting sick, plus, there’s a needle there and all… someone could poke an eye out! In such cases, you’re required to dispose of this crap using what’s called a “sharps container”. Here’s what a traditional sharps container looks like, and a traditional Rachael wearing a traditional Magical Mystery Tour shirt:

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Or you can go the untraditional route… which I also do sometimes. In New York State, if you use a hard plastic receptacle and label it properly, you can stick needles in something like this (which I think is really bizarre):

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The regular sharps containers are really small and only hold a few of those pre-filled pens… whereas this big fella holds DOZENS of them. So… erhhmmm….

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I think you know my preferred receptacle. Cuz I’m lazy. And this amuses me. And if I can find a way to be amused by used needles, I am DEFINITELY going to take it.

 

MISCELLANEOUS QUESTIONS ABOUT INJECTING:

When should I inject? Okay, this is really important. This is probably the best advice I can give you in this one little paragraph. I discovered that my side effects from methotrexate injection start about 12-15 hours or so after I inject. Sometimes I feel a little pukey immediately after injection, but the real shit happens after about 12 hours. Therefore, I time my injection so that I’m asleep when the 12-hour mark hits. I used to take the injection on the weekend because it makes me mentally… slow the day after I inject and I work full-time. I thought, “Oh! I’ll do it over the weekend and all the side effects will hit me when I’m not at work, this is a brilliant idea.” It’s not. It’s a terrible idea. If you work full-time, do not save your miserable time for the weekend. Why? Because you, m’dear, NEED A REAL BREAK. You probably work harder than the majority of your workmates just to make it to work every day and need that weekend for your emotional wellbeing. DO NOT let methotrexate steal your precious weekend time. Don’t do it, dude. STOP IT. NO! 😛 I used to inject on Saturdays and it nearly tore me apart because I couldn’t schedule anything for the entire weekend. Friends hung out, I couldn’t go. Family went to dinner, couldn’t join. I couldn’t go to movies, I couldn’t go to parties. This shit really upset me, and then I wasn’t recharged when I went back to work.

When I started figuring out that timing and injected exactly 12 hours before bedtime during the week, it changed my life. So figure out precisely when it causes you to have side effects (it could be completely different timing for you)–whatever they might be for you (nausea, vomiting, diarrhea, mental confusion, memory problems, etc)–and DO IT. Trust me, this is a fantastic way to deal with the side effects. The only time I would advise against this method is if your only injection side effect is insomnia, in which case, inject very early in the day and hopefully that side effect will wear off by the time bedtime comes around. It’s up to you to experiment with injection time. Keep a calendar, try things out. Having rheumatoid arthritis and needing to take all these medications doesn’t mean we’re completely powerless–there are some things we can do for ourselves, and that’s a blessing. It’s important to exert control when you can. I think that’s just true in life, generally. Figuring out how to best decrease the impact medication side effects have over your life is something you can do for yourself if you are clever.

Does the injection hurt? Well… meh, not really anymore. The first few times I felt a tiny pinch, and now I usually don’t feel anything. I’ve done this a lot of times so maybe I’m just used to it. The needle is very thin, though, so generally you shouldn’t expect a giant wave of agony from the needle. However, I have noticed some pain going through my thigh muscle for a few minutes after the injection on occasion. If this happens, it’s nothing to worry about. Pretty sure it’s just my muscle going, “Why did you just put a bunch of methotrexate in me? This is poison, Rachael.” But then, my muscle stops being such a big baby, and it stops hurting entirely.

Anything else I should expect? Yeah. STAY OUT OF THE FRIGGIN SUN. If you take methotrexate, you will be sensitive to the sun. You are now a VAMPIRE FREAK. Deal with it. This blog post is supposed to be about injections in particular, but this side effect disturbed me so greatly I’m veering off-course to tell you about it. Because I ignored it and it was a mistake.

Little ol’ me went to the park, so excited to be out and about. Look at me, at the park! I hadn’t been out in years because I hadn’t been diagnosed with RA yet and I’d been very sick, unmedicated, unable to go out…. but now I’m FREEEEE! So I went to the park, and for the first time it was summer (this was a few weeks ago), and I was on methotrexate, of course. Like an idiot I wore no sunscreen and sizzled like a piece of bacon. At first, my skin just burned abnormally quickly. I then remembered, whoopsy daisy, that Rasuvo pamphlet told me my skin would be sensitive to the sunlight and I might burn more easily. LOOKY HERE, I burned more easily. I thought that would be the end of it. NOPE NOPE NOPE. For about two weeks later I broke out in a series of hives, because you can develop a series of other skin conditions related to the sun, like literally being allergic to the sun, when you are on methotrexate. Now when I get a sunburn, I break out in hives for a few weeks all over my hands and arms. Once the sunburn died down, I took a picture for my doctor, which is pretty sweet because I can show you the proof that will hopefully stop you from being stupid.

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Don’t be stupid like me, use sunscreen. And/or wear light linens covering your skin in the summer.

Do I need to store these in the fridge or sumptin? No. Room temperature. The box has a temperature variant on it so you know the range that’s safe for storage. It’s basically just “don’t freeze it” and “don’t leave it on the surface of the sun”. That sort of general rule. Also, if you have kids or elderly people who are not of sound mind, keep this REALLY far away from them because it would make them SO SICK, as it would tank their immune system really badly. Same with pets, keep them away. Put it in a cupboard or something where no innocent paws or fingers can get at it. Also keep it away from something like gross mold, water damage, eh… asbestos? What else is horrible? Monsters? Black holes? Movies with Pauly Shore, I think we can all agree… (except Bio Dome, that really made me laugh; should I be worried that I enjoyed that movie? maybe this is a side effect of the methotrexate… yeah… …)

Do I really have to bother using the alcohol prep pad before injecting? I’m tired and lazy, I’m sure my skin is clean. I just showered! Also, I’m a good person. I am wearing all white! I’M PURE OF HEART! I HAVE SO MANY KITTENS! Yes, despite all those things, you really have to bother sterilizing your skin immediately before injecting. Every time. Every single time. EVERY TIME. You can use either alcohol or hydrogen peroxide. Methotrexate lowers your immune system, so if you don’t sterilize the area of injection right before injecting yourself with the stuff, boy are you playing with fire… all the teeny little DEMON MONSTERS living on your skin get pushed into your body by that needle, dude. We have a lot of crap sitting on our skin. Often, literally, crap (here’s looking at you, E-coli 0157H7). Viruses, bacteria, fungi (who are NOT fun, no matter what they named themselves to trick us… bastards…), all this stuff can get pushed into your blood stream by a needle. All this junk can cause a little infection–or worse a big infection–if you don’t murder it with alcohol or hydrogen peroxide. So do your duty, killer. Kill it! KILL IT GOOD.

What happens if the medication is expired? Unfortunately, you can’t use it. The medication starts losing its potency really quickly and so you won’t have any idea what dose you’re actually injecting (I asked a pharmacist about this once, because they sent me an expired box… thanks, jerks). Get it replaced asap. And in the future, here’s what you should do: When you first get the medication, look at the box and the pens immediately. Make sure they aren’t expired. If any of them are expired, call the pharmacist RIGHT AWAY and deal with it. Be extremely persistent and make sure the pharmacy overnights you a new supply. Exaggerate when you are due your next shot. If you have to take it on Saturday, say you’re injecting on Thursday. Then, you might have a chance of getting it on time. Don’t wait until your injection day to look at your medication. My general rule when dealing with medications: assume everything has and/or will go wrong. Every time. Trust no one (pharmacists, health insurance provider, doctor…), just like Fox Mulder! It’ll get you far.

Isn’t it scary to inject myself with a needle? Um, yes? The first time. But I promise it isn’t actually that bad at all. Plus then you’re a total BADASS. The timing of this injection is such that I do it at work. It makes me feel like a champion knowing I go into the bathroom stall, stab myself in the leg, and then go right back to work. Once I did it mid-meeting (left the meeting, injected, came back). Self-injection is not nearly as scary as you might think it is. Especially if you are using a pre-injected needle, because then you don’t need to worry about messing up the dosage.

Alright, there. I tried to be nice. Now I’ll say what I really think. Stop being a baby. This is significantly easier than taking a pill EVERY SINGLE DAY, and you know it. Injection leads to so much less nausea, vomiting, and diarrhea. Are you gonna take the pills all the time just because you’re scared of a tiny little needle? SERIOUSLY? Unless you have a phobia, or your insurance is giving you a lot of shit over this, you should really be considering injecting this medication if you’re taking it. I can’t believe people take methotrexate pills… so many side effects. RA is miserable enough, don’t add to it if you don’t have to!!! Meh!!!! You can do this!!! If you can do RA, you can DEFINITELY do this, friends.

 

Et, voila. That’s all the stuff I know about injecting Rasuvo, leaving out the only thing that sucks about it: insurance. At some point when I’m feeling particularly emotionally zen, I will write a blog post about that. I hope this proves informative! 🙂

 

From the depths of my whatevers…

Somewhere in the midst of the depths of me yesterday, I became transfixed and had to art. This is what I arted:

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Bad picture, sorry. It really is true, you know. I was in a crappy mood but… You can get something out of miserable times if you channel energy properly. I’ve been wanting to draw something like the above work (Kandinskyesque) for many years but just never got around to it.

After drawing, I was completely emotionally numb. I went to bed at 6:30am (that’s healthy right?). Now I pretty much feel normal. I guess I worked out whatever needed to be worked out! Thanks, art!

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…”.

Body Shamed by NYC

Hello everyone!  It’s been a long time since I’ve last written.  That’s because all kinds of stuff happened.  But that stuff is super boring so I’ll just give a brief synopsis:

  1. I messed up my big toe (sesamoiditis) and had to wear a boot for the entire winter, it was awesome.
  2. The day I got my boot off, I started not feeling so great… fast-forward a few hours and I was in the hospital writhing around because I had appendicitis.  I got an appendectomy and a LOT of drugs, and I healed up pretty well except now my belly button looks weird.  Thanks for the weird scar, laparoscopic procedure (in all seriousness, I’m really lucky they were able to do the surgery this way; it means three tiny incisions instead of one huge incision and a giant scar across my belly).
  3. I still had migraines throughout that stuff.
  4. I did not crack.  MIRACLE.  However, I did gain erhm… a little bit of weight.
  5. Now I’m back at work and the migraines are well under control.

The end!  Now we’re all caught up.  So I’m trying to get back into shape because I’m not crazy about my body such as it is right now.  I want to be the person who always loves her body.  The female body is really beautiful.  I love its curves, its lines… guys, you are really sexy, but you’re modernism sexy.  You’ve got some great, sharp lines.  It’s all very angular.  But us ladies, we’ve got softness and curves all over.  At some point, women are taught to judge those curves in all sorts of ways.  These are too big, these are too small.  These aren’t in the right place at ALL.  Why is this curve bigger than that one… aren’t they supposed to match?  HEY that curve is getting bumpier… I don’t like that.  Why is this curve getting SO MUCH BIGGER?!  Um… hey why is that curve way down there now?  WHAT SIZE is that curve?!  Miss, you must be wrong; that number is really far along in the alphabet…

Normally I am around a size 12.  The full “typical” range for me is between a size 10 and 14.  Now I am a size 16 or XL and I weigh approximately 201 pounds.  My bra size is 34H.  Yeah you read me right.  BAYUM.  Mammolanche.  My figure is hourglass.  I just bought some new bras that fit properly so I can hoist my breasts up high enough to expose my natural waist.  My body has mostly retained its general shape since the weight gain, except that my belly right about the bellybutton juts out very slightly as a result of the scar.  Wretched scar.

Normally I feel semi-okay about my body but after the weight gain, it’s been difficult to look at myself in the same light.  My boyfriend tells me I’m sexy and beautiful and, god bless him, he really seems to mean it.  And sometimes I even look in the mirror naked and don’t want to run away screaming.  But since I’ve gained the weight, I’ve had to get some new clothes.  I may lose weight; it’s fairly likely since I’m more active now and I cook a lot of healthy food, but I still need clothing in the meantime.  I finally came into the means to afford some new clothes (thanks, parents; not thanks, economy) and it has been a REAL education out there.  I live in the East Village as I’ve stated in my blog many times, so I decided to go shopping for clothing in my neighborhood and just get a few high-quality items.  I had great luck at a small store called Meg (https://www.megshops.com/), which is costly, but if you buy clothing there they will have their tailor make any necessary amendments for you for free, the clothing is made right in Brooklyn, and the salespersons are extremely kind and helpful.  They generally go by the XS-XL sizing system.  I also had some luck at Eileen Fisher (http://www.eileenfisher.com/EileenFisher.jsp); the line is, again, expensive, however they carry a lot of XL in their stores and their clothes run quite large.  They, too, are very kindly.  I got a few items from The Gap because they actually carry size 16 pants in their stores and I can’t very well spend over $100 on every single thing I buy.  My parents aren’t made of money and it was nice enough of them to help me–I don’t want to take advantage of them.

These were the good experiences I had.  But far more often, I had surprisingly bad experiences.  I should preface this by saying that I have tried a size 1X and it is too large on me, otherwise I would go to plus size stores and not have to deal with some of the shit I’m about to share.  The body shaming began in a store called Think Closet.  I went in there because they have some really funky, interesting, and seemingly well-made clothing arranged playfully by color.  It occurred to me pretty quickly that I wasn’t seeing anything other than XS or 00 to size medium.  I thought, well this is weird.  So I asked the bored-looking salesperson if the clothes were somehow arranged by size.  She said, no.  I said, do you carry size large in this store?  Obviously I thought the answer would be yes.  Keep in mind I’m a size XL.  She looked at me–up and down my body–and said, um, no, sorry, we don’t carry sizes that high up.  I said, why not?  She said, we get our clothes mostly from Korea and people don’t get “so big” there.  In a Yelp review of the store, one person had the balls to say this: “only thing saving this shop from 5 stars [she gave the store a 4-star review] is the fact that their items were a bit on the big fit size, which is surprising for a shop that gets their items from South Korea.”  1) I very much doubt all South Korean women are a size medium or below.  2) Let’s just say almost all South Korean woman are at or below a size medium for funsies; is that really a reason to look someone up and down who is sooooo big?  What an asshole that woman was.

Next store, Ann Taylor Loft?  What what?  They carry size 16!  Yes, friends, they do.  But no longer in their stores.  At least not in the East Village store.  After browsing for a time I asked a salesperson if I could speak with a manager.  She was very polite and indicated that she was one of the managers.  I said, “It doesn’t seem that you are carrying size 16 in your store at all anymore, but I know you make the size.”  She said yes, that was true.  I asked why they stopped carrying it in the store, and she told me that that size rarely sold.  I pointed out that I hardly ever recalled seeing more than one size 16 in anything in their store before so it must have been difficult to find.  I continued to say that perhaps people wearing a size 16 didn’t feel like sifting through all of their clothing, hoping to find the rare size 16s the happened to be in the store that day, and that maybe that’s why they had a hard time selling size 16.  The manager smiled at me.  It was obvious what the company was doing.  They were essentially discouraging people of certain sizes into the store, marginalizing them to the online stores so as to keep their clientele in-store nice and trim.  And, “cleverly”, they managed to do so while claiming that size-16 people didn’t buy their clothing in the stores, and that’s why they only carry the clothes online.  But I think it’s even more than that.  I think that women are scared to go into stores to look for size 14 or 16.  Why?  Because we’re supposed to be ashamed of those sizes.  So-called “plus-size woman”, a mere 1-2 sizes higher, are judged for their body sizes and shapes regularly, but they do have a kind of community.  There are stores devoted to sizes 16W and/or 1X and up.  Women between the “average” (bullshit) sizes and “plus” (bullshit) sizes are kind of screwed.  I guess we’re supposed to be too embarrassed to shop in public.

Free People.  They carry size XL online, but not in their stores.  I found out after trying on a gorgeous top that fit beautifully everywhere except the bust.  When I asked about size XL the saleswoman snottily told me she didn’t need to look in the back because she knew they never carried size XL.  She then rudely walked away, as I watched her treat young women with tiny bodies like royalty.  She did not direct me to their website, which as I said, does carry size XL.  I won’t be buying it, though.  Because screw them, that’s why!

An Ren.  By far the most depressing trip.  They make some of the most interesting jackets, blazers, and coats in all of Manhattan.  Everything is really well made, really interesting.  Unique.  And anyone with an hourglass figure will tell you that a fitted blazer makes your figure look incredibly good.  I was in their store once and couldn’t afford to get anything there, and I remembered I was exactly a size XL so I was very excited to go back and get a really nice jacket to wear to work.  Except they didn’t have a single size XL in the shop.  When I asked why, the saleswoman told me that because space was limited they couldn’t handle having a size XL in there at the time.  I admit, their shop is very tiny.  But it can accommodate a single size XL garment.  I mean, I know it’s big enough to blanket half of Manhattan and all but they can probably fold it up reeeeally tightly to fit it in there, merely so someone could try it on, right?  If the size XL monster could physically fit into the store, that is.

I ended up buying a few jackets online from White House/Black Market, because their size 16 and XL are both perfectly accommodating of my figure.  They tend to add stretch to things, which obviously makes for a better fit around the lady lumps.  I have to say, I feel really beautiful in these garments.  All it took was something that fit my body.  It turns out, it’s not the size that bothered me, but walking around wearing clothes that look ridiculous because they don’t fit.

Okay so maybe I’m taking all of this a little bit too personally.  But some of you know just how I feel, don’t you?

 

 

 

Some extra-fun colonoscopy prep tips

I had this really grandiose idea about writing a giant blog post after going through my colonoscopy, as if this would be a one-stop-shop for anyone about to get their first colonoscopy. But there are plenty of information sources for colonoscopies and what to expect from them (including, one would hope, your doctor). More importantly, the colonoscopy itself ended up being way less action-packed than the prep itself, and nobody told me that! So what I’m going to do is skip providing a traditional “how to” section about a colonoscopy and merely give you a list of things that I sure as hell WISH I’d known about colonoscopy prep, but that aren’t listed on, say, the Mayo clinic website. Not in any particular order. -EDIT, 17 January 2017

Image

  1. When you do your prep for a colonoscopy, you shit fire out of your ass for an entire day. They say it’ll only be for a few hours, but for some people, it can be for, say, 13 hours (read: me). THIRTEEN hours of sitting on a toilet with horrifying things coming out of you violently. This is, believe it or not, okay. Just be prepared, you might be in the minority, and you might be on the toilet for even longer than expected. But you’ll survive, I promise!
  2. Your poo will turn from dark brown smushiness to a liquid yellow, or even colorless.  It’ll have weird things in it when it’s yellow. Little bits of… whatever. That’s normal. Just yucky.
  3. Have a huge supply of really soft toilet paper in the house.
  4. Have a huge supply of wet wipes for your butt in the house (especially good if they are unscented, because the scented stuff can have chemicals that irritate your butt when it’s inflamed/upset/shitting fire).
  5. Soon, your anus will start to burn like fire, not in some kind of metaphorical sense. It will literally feel like it’s on fire. You think I’m kidding? You think I’m speaking in hyperbole? I am pretty sure if took a blow torch to my ass for a couple seconds, it’d feel just like it felt at about hour 10 of prep. So what you can do is, when you START feeling uncomfortable, you need to begin using the wet wipes to give your butt a break. And then once you’ve cleaned yourself off, totally slather your anus (I know, I know) with plain, unscented Vaseline. It will protect your precious, innocent butt. Because if you don’t do this, eventually your anus will begin cracking (NOOOOO!!!) and bleeding. Even if you DO do it, it may begin bleeding. You can apply this by putting a large dollop on a piece of toilet paper and carefully dabbing it all over yourself, right on the “good” bits. Don’t be shy. I started using the Vaseline late in the game and until I did, I found myself actually screaming while on the toilet. You shouldn’t consider me a typical case–I’m pretty sure my… session lasted an unusually long time. Nonetheless, once I put on the Vaseline things were way more pleasant. I just kept reapplying after each potty break.
  6. Some people find that once their pooing has subsided, a lukewarm bath is very soothing on the ol’ derriere. Just don’t put anything in the water, because some soaps can be irritating.
  7. Keep a range of reading material in the bathroom. I found that inane magazines were the best. I was unable to focus on any serious reading and found Time Out NY much better. Especially the fashion sections. I read that one person used to wheel her tv into the bathroom during this special time. That’s pretty brilliant. EDIT, 17 January 2017: Since writing this portion, I think the idea that someone would “wheel” any television anywhere is hilarious. Even a few years ago, what was I thinking? Obviously, you’re just gonna bring your iPad or your phone into the bathroom like we all pretend we DON’T do, and you’re gonna watch Netflix or Hulu on it. That’ll do just fine. But if by some miracle you still have a television that sits on a device with wheels… well, do you think you could take a picture of it and send it to me? I’d like to see that in action. My grandpa had that setup and I miss it!
  8. Speaking of televisions, you’re going to have a lot of time in between potty breaks where you won’t really be able to be far away from the toilet, but also unable to do anything else.  So I think now would be a great time to have a tv show marathon.  Mine was Law & Order: SVU. I’ll admit that the occasional mention of “anal tearing” on that show was really off-putting especially given my condition at the time, but otherwise, it was very entertaining. Christopher Meloni is HOT (Sorry, boyfriend, you know I love you and you’re the hottest man in the world…). Weirdest way to be distracted by a colonoscopy prep ever? This is embarrassing.
  9. Drink tons of gatorade the day before you do your cleanse. You’re gonna be WIPED. OUT. So basically you’ll want to make sure your electrolytes don’t get dangerously out of balance. Best way to do this is to load up beforehand.
  10. Wear incredibly comfortable clothing that can be removed super quickly. I recommend pajama pants or sweatpants without drawstrings, or at least without drawstrings tied. You will be really surprised as to how quickly you’ll need to rip your pants and underwear off. Don’t be silly and wear jeans or something. You will not have time to remove them… and then you’ll be in one horrible mess. (shudder)
  11. Drink vanilla and/or strawberry Ensures (or other such “meal replacement” shakes) to keep your energy up. They’re delicious! Sorta! Not really! They’re fine… they’re better than starving. Most doctors are perfectly fine with you drinking these on the day of your prep. Ask your doc!
  12. Make homemade chicken broth (or vegetable broth if you’re a vegetarian or vegan) before your prep. That way, instead of drinking some crap from a can or whatever, you’ll have something delicious and fresh and full of vitamins/minerals. There are many recipes for chicken stock on the ol’ Internets. It isn’t hard, just time-consuming. But remember you can freeze it and if you have extra left over you can use it for making soups later. Real food to replace what you just did. EDIT, 17 January 2017: Don’t listen to me if you don’t feel like making homemade broth, go get some broth from a can, pouch, or make some from a bouillon cube… or that Better than Bouillon stuff. I was going through a real, snobby asshat phase when I wrote this post where I just HAD to cook everything from scratch. Now I live in reality and cutting corners is what most people have to do because, hello, people have families, jobs, they’re sick, etc. Broth is delicious in all forms. Just do whatever you can do and have some delicious broth! YUM.
  13. Make sure you have tons of soap in the bathroom. Because you are going to need to wash your hands approximately seven million times. And if your hands tend to get dry, some lotion, as well. EDIT, 17 January 2017: AND. It’d better be a scent you really like, because you’ll only smell it seven million times, remember. The way I see it, you have a few options, depending on what kind of person you are. 1) Pick a soap scent you already know you love; 2) Pick a special soap and scent, something reeeeally extra wonderful, because hey if you can’t have nice soap now when’s the time?!; 3) Switch it around so you won’t be bored with the smell and/or nauseated by it (some people find a repeated smell unpleasant). Do give this some thought based on your relationship to smells. I’m extremely sensitive to scent and decided on a lavender-scented soap because it’s my favorite scent.
  14. Hemorrhoid cream! This might make your butt feel better after several hours of diarrhea. Give it a try.
  15. Don’t be alone in the house. I mean, I don’t recommend having a family member, friend, or partner in the bathroom with you unless you have problems getting on and off the toilet (in which case, they are really in for a fun time and you need to buy them a drink after this), but it’s a comfort to have someone around who can get things for you if you need. There were a number of times I screamed things like, “VASELINE!!!” and “MORE TOILET PAPER AAAAAAAH” down the stairs. Also, you will want emotional support. I found it extremely difficult not to vomit the Suprep stuff you have to drink… TWICE. My boyfriend stood there while I drank it cheering me on. At once point when I was very nauseated he comforted me by giving me a little back massage and that distracted me quite a bit from it.
  16. When you’re drinking your prep stuff, use a straw! That way, the horror touches less of your tongue and you taste less of it. Also, you may be able to refrigerate the stuff for a little while before drinking it. The tongue tastes a bit less of something when it is very cold. EDIT 10/20/2017: Ask your doctor if this is an option. The medical info packet provided with Suprep states the following:“Store at 20° to 25°C (68° to 77°F). Excursions permitted between 15° to 30°C (59° to 86°F). See USP controlled room
    temperature.” However, my doctor permitted me to refrigerate the Suprep prior to ingestion (and it was effective), and others have done so successfully as well. Again, do not do this without asking your doctor. One of the people in the comments section came up with the idea of creating prepsicles (brilliant), which didn’t work for them (they have a very sensitive stomach), but I think this might work for others. Freeze the wretched Suprep and eat it like a popsicle. See if you have better luck not puking it up that way. Executed with Crystal Lite, apparently. Again, you will need to consult with your doctor to see if this is a viable option, because you need to ensure this does not hinder the efficacy of the medication. You don’t want all of this to be for nothing!
  17. THE NAUSEA GOES AWAY! If you can just make it through the first 30 minutes of nausea you’re pretty much home free. Then of course it all comes out of your butt, which is gross, but I prefer that to feeling like I’m going to hurl. Keep telling yourself it’s almost over, it’s almost over, don’t throw up. EDIT, 17 January 2017: If you absolutely can’t keep this nasty garbage in your stomach, don’t wait, call your gastroenterologist right away. It might be that you need another type of prep. And that’s okay! Everyone’s different. I have such a sensitive stomach, a fairy was likely sprinkling magic anti-nausea dust on me to help me keep that shit down.
  18. When you’re nauseated, you will often salivate a lot. Try to spit it out instead of swallowing it. Sometimes swallowing makes you even more likely to gag.
  19. Once it’s all over, remove all the towels in the bathroom and sanitize everything. I really don’t think I need to extrapolate on that one. You doodooed a lot.

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Here are some colonoscopy bonus facts:

  1. The shit they give you to make you go asleep during your colonoscopy (read: if you’re given meds for your colonoscopy, and they call it “twilight”, you won’t feel a thing, awesome!!!) makes most people borderline euphoric when they awaken. YAY!  Enjoy it. Mmmmmm. Druuuugs.
  2. They pump you full of air when they do a colonoscopy, like your intestines become one of those long, thin clown balloons. I can only hope they don’t try to make any shapes out of the intestines but let’s not go there. Well it’s not like the air stays in you forever. Which is HI-LARIOUS. Don’t be a jerk and be all embarrassed. C’mon.  You come out of your colonoscopy, laying on recovery bed all woozy, pretty happy from the drugs, and you are gonna fart and fart and fart. Epic farts, monstrous farts. Award-winning farts. And you’ll hear OTHER peoples’ farts. So let your fart flag fly, dude. Don’t be all, oh no! Someone heard me fart. Seriously? The recovery nurses (god help them) hear farts ALL. DAY. LONG. I had a good laugh with a very nice nurse named George over it. Take your special farting in public loudly opportunity and let ‘er rip. George takes it all very seriously: “I don’t let anyone leave until I’ve heard them farting.” (giggle) Great, George. That’s great. It must be quite something to know him personally. EDIT, 17 January 2017: I still think about George, and wish him well. I hope he continues to encourage every once of his patients to fart really, really loudly for him. What a freeing experience.
  3. Before your colonoscopy you’ll be wandering around with your ass hanging out of a gown and worry about strangers looking at your ass. Why? Honestly however your ass looks, remember that really, really, really, really old people get colonoscopies a lot. However old you are, someone older than you gets colonoscopies where you are about to get yours. And their butt is probably wrinklier/bigger/stranger/spottier/whatever than yours. But who cares? It’s just a butt.

Alright that’s it. I hope you’ve learned some good tips and/or gotten some relief and have learned from my experience. Now I will try to forget about that prep forever and ever, or until the next time. The colonoscopy itself is a snap! It’s the prep that sucks. YEEK. Next time I know what to do!

EDIT, 17 January 2017: I’ve received so many positive responses from this post, which brought me tremendous joy. People shared their own stories, prep-tips, and told me that laughter helped them with their prep experience. Those comments meant and continue to mean so much to me. I write very frankly, which is why you see words like “fire” a lot, and I fully admit to enjoying drugs in a medical setting (c’mon now, you do, too… c’mon… ever have morphine after a surgery? I had my appendix out once and WHOA nelly, I still fantasize about that sweet nectar). But I hope nobody took that to mean I wasn’t taking the topic seriously, and had–and continue to have–a very real hope to help people feel better about situations such as swallowing poison that makes you shit out every bit of fecal matter in your body, followed by having a total stranger shove a big hose up your ass. Resilience: people are built of the stuff. We survive strange, painful things all the time, every day, as evidence by the birth of each and every once of us (coincidentally, ANOTHER event that involves poop in a really unpleasant and embarrassing way). I’m no guru, but for what it’s worth, I’m pretty sure the way to live isn’t to eliminate pain. It’s to figure out how to accept it when it happens and enjoy life despite it. We all have pain. Conservative, liberal, moderates, Black, White, Asian, gay, straight, trans, no faith, Christian, Jewish, Muslim, northerners, southerners, midwesterners; doctors, steel workers, teachers, people without homes, people in mansions, apartment renters. A lot of different kinds of people, not one of them born without the ability to feel pain. We all have to figure out what to do about it, whether it’s physical, emotional, mental, or spiritual pain. I don’t know about you, but a couple things help me deal with it: being informed, and laughing my ass off.

Thank you for your comments. I do hope you’ll keep them coming. 🙂  –Rachael

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.