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.

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! 🙂