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.

The emotional ton of bricks of diagnosis and denial

When I was diagnosed with rheumatoid arthritis, it was really scary. I had a lot of sad/destructive thoughts…

  1. My joints are going to become deformed and I’ll look scary to children. They will think I’m an evil demon witch. That’s 100% definitely going to happen.
  2. I’ll need to get my joints surgically replaced. All of them. 5 times over. Definitely.
  3. My lifespan is decreased 5-10 years.
  4. I have to take chemo medication for the rest of my life. I bet that’s not going to feel very good. The cancer patients don’t seem to enjoy it. I’m going to lose my hair, right?
  5. I’m too fat for my crappy joints.
  6. I’m going on disability, there’s no way I’ll be able to work.
  7. I’ll be stuck on my couch forever, like a hermit, even worse than usual.
  8. I’ll be extra bad at sex now.
  9. My parents are gonna frrrrrrreak the fuck out.

I also had some really happy thoughts…

  1. FINALLY, a diagnosis! Jesus christ, I did it!!! I found it! It took long enough. I know what’s wrong with me! Hooraaaaaay!!!! 😀 😀 😀
  2. I can focus on getting better instead of focus on finding out what’s wrong!
  3. Now people will believe me! 🙂
  4. Now I’ll be able to take medications that treat the illness instead of just the symptoms.
  5. It’ll be easier to get pain medication when necessary now that I have rheumatoid arthritis. Fuck you, doctors who never believed me (middle finger + sneer).
  6. I wonder if I’ll ever be able to get a prescription for weed… (the answer is yes, in some states, I totes could… not in NY State yet but it’ll happen)
  7. My parents are gonna be so happy!!! (when I get medicated and feel better)
  8. I bet I might be able to actually plan stuff again if the medications work (THIS TURNED OUT TO BE TRUE)
  9. Pickles!!! (I wanted to have the same number of happy thoughts as sad thoughts, and I really like pickles)

Obviously, some of my thoughts were real concerns, real joys. Others were ridiculous and stupid. It’s so incredibly complicated when you get that diagnosis after years and years of being sick. I’m still digesting it and it’s been months. My biggest problem now is I periodically insist I don’t have rheumatoid arthritis, and I believe I’m somehow “faking it”. My boyfriend finds this deeply disturbing, as he witnessed me in agony on the couch for extended periods of time, and remembers me having such a difficult/painful time getting into work I’d arrive covered in sweat (he was recounting this to me recently when I asked him to remind me what pre-methotrexate days were like). That is, when I made it into the office at all…

My RA presents with less swelling and stiffness now because I caught it early and treat it very aggressively. In other words, I’m young and taking my drugs so I’m not doing as poorly as some 70-year-old woman who went untreated for 20 years. You’d think this would lead me to understand why my joints aren’t very swollen, but instead, I keep thinking, “Oh, I must not have RA!” That’s a real thought I have fairly often. Regardless of how much pain is in my joints. Or if they are stiff or anything… I am genuinely incapable of squatting all the way and then getting up–and I know that’s a thing most people can readily do all day long if they want to–yet I am typing to you trying very hard to acknowledge that I have the disease I know I have, a disease I’ve been diagnosed with, I’m being treated for, AND the medication is working really well, remember…

Why am I so fucked up, one might ask? Years of doctors not believing that I was in pain when I told them I had headaches and neck pain, that’s why! I was told so many times nothing was wrong with me I started to believe it. Eventually, doctors started figuring out that things were wrong (unrelated to RA, a number of disc herniations in my cervical spine causing me a lot of neck pain, for example, which would have been discovered immediately and I could have done PT for it if anyone bothered to do an MRI… assholes…) but by the time I was getting diagnosed for the pile of health problems I’d been accumulating I’d already developed some fun new assumptions that I am still trying to shake from my subconscious (and semi-conscious) mind.

  1. Don’t trust doctors.
  2. Doctors don’t trust me.
  3. Don’t trust myself/it’s all in my head.

I guess I thought when I was diagnosed everything would be simpler. WRONG. 😛 Things are a lot better but they aren’t simpler. I still have to work through aaaaall my emotional shit. Being initially listened to and subsequently believed by a rheumatologist and getting a diagnosis didn’t suddenly make me trust all doctors… and it didn’t make me think all doctors would believe me if I went to them and told them I had some symptoms. And it certainly didn’t cure me of the “it’s all in my head” problem I’ve developed. I inject myself with methotrexate every week and I’m still saying, “you’re making it up, it isn’t real….” (blank stare) Normal, right?

I am deeeeeeply disturbed! I’ll keep working on it. 🙂

Don’t laugh at my headache, yo

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

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

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

Ha. ha. ha. ha….

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

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

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

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

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! 🙂

 

I’m back, and here’s what I’m gonna do

If you’d been following my blog posts in the past, you may have noticed I disappeared for a while. That’s because I got really sick, was diagnosed with rheumatoid arthritis, went through a lot of meds to find the right doses and such, etc. It’s been… a ride. But I’m feeling a lot better!

Now I have a new goal. This blog is going to be about putting into words the ways I intend to live life fully with chronic pain/chronic illness, especially (but not limited to) rheumatoid arthritis. When I experience a new procedure or a new medication, I will try to describe it in great detail, because it seems that other people respond to that (see my colonoscopy prep post for evidence; I can’t tell you how heartwarming it is to know that post gave so many people a good laugh). Since I haven’t been blogging for a while, I’ll definitely write some posts and play “catch up” in that regard. For example, I’ll write a post detailing what it’s like to give yourself a Rasuvo injection, because I wish I’d known what that was like before doing it myself! Everyone who has to go through a medical procedure or take a new drug wants to know what it was like for other people. Real people. That’s not too hard, I can provide that! I’m a real person! (waves)

I think living with chronic pain is something that can be done well. It isn’t a death sentence, it isn’t something that has to be an absolute nightmare, though it CAN be at times, and nobody should diminish your pain. Fuck anyone who tries to convince you chronic pain is anything but TERRIBLE. It’s terrible, we all know that. But I am eager to push through that into something different, and I have discovered a lot of ways to really live with these pains. I’m interested in sharing my thoughts with others and look forward to doing so. I hope others will share their thoughts with me, too.

Glad to be back, everyone.

Mama, I got the rheumies! (or, Finding out I had rheumatoid arthritis)

Last October, I was diagnosed with rheumatoid arthritis. That was kind of a bummer, because last summer, I was diagnosed with fibromyalgia. And prior to that, I was diagnosed with chronic migraines and IBS and herniated discs and occipital neuralgia… ya that’s all the physical things in a nutshell. Okay there’s some others but I can FEEL you getting bored.

So you can see how I was a little… disturbed. A normal person would be disturbed by that diagnosis. But I’d spent several years getting increasingly sick and isolated. I spent a lot of time on my couch, not seeing my friends. Canceling on plans I’d actually managed to make with friends or family. Becoming a hermit. Not going out to restaurants with my boyfriend very often (if ever, okay, to be honest). Doing almost nothing outside other than playing pinball occasionally and traveling to and from the office, which was a rarity because I worked from home most of the time. It was exceptionally depressing.

When I was diagnosed with rheumatoid arthritis, everything fell into place. Why were my headaches getting worse and worse? Not just because of the fall I’d sustained when I was 16, but because my immune system was attacking the top joint in my neck (that’s the only joint in your spine, btw). Why all the gastrointestinal problems over the last several years? Well, people with RA happen to have a lot of gastrointestinal problems. Why did I get sesamoiditis a while back and end up with my foot in a boot for several months? Because it wasn’t sesamoiditis at all. It was a rheumatoid arthritis flare and my then-doctor was wrong… which happens all the time. In fact, having a flare-up in that particular joint is very common as a first-place for a rheumatoid arthritis flare. Diagnosing RA is a real bitch and often takes years. You need to do a lot of tests (blood tests, sometimes xrays, sometimes MRIs, you need to see a few different kinds of specialists to rule out certain things, which I’d already done prior to seeing a rheumatologist). Plus you talk to the rheumatologist about your history, of course. They look at your joints, talk about stiffness in the morning (hehehe). WELL I have it, folks. I have it. It runs in my family, and poof, I have it.

I’d been getting sicker and sicker for years, and now I know why, FINALLY. A DIAGNOSIS. If you are a chronically sick person, you know exactly what kind of feeling I had in that diagnostic moment. Terror? Yes. But relief? Also, yes. It’s horrible not knowing what’s wrong with you. When I found out what was wrong, though, I could finally do something about it. That put me, at long last, on the offensive. I had power. I had agency. Look the fuck out, because I’d spent years being attacked by my body and finally had the opportunity to do something about it. I was about to get very aggressive…

Coffee + Depression

When you have chronic pain, you often struggle with depression. It’s important to face it head on. Don’t ignore it. Depression is real, it’s serious, and it can be deadly. It can get out of control. Depression caused by chronic pain can get particularly ugly, because those of us with chronic pain often know that the pain will not be going away–ever. There’s no relief in sight. Or, if we get relief, it is fleeting. That’s a depressing thought. It’s difficult to get around that, and one has to figure out how to make some kind of peace with it. Once, I wrote this short piece describing depression, and what it feels like to me. I hope if you suffer from depression, you know two things: 1) you are not alone. 2) you need help… get it.

Depression is seeing a cup of coffee.  Saying to yourself in your mind, pick up the coffee.  Pick up the god damn cup of coffee.  What’s wrong with you?  You can do this.  Pick up the coffee.  It’s not that hard.  You can do this.

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Then you pick up your stupid cup of coffee and say, hold it by the handle.  You can do it.  Turn the cup around and hold the fucking handle.  Just hold a cup of coffee like a normal person, god damn it.

Okay now move your arm up and put the cup up to your mouth.  Just get it in the proximity of your face.  It’s 100 pounds but you can do it.  Look at everyone else, they bring cups up to their face all the time.

Touch the cup to your lips.  Get it to your god damn lips, you lifted it up near your face, now get it to your lips.  Or move your heavy head towards the cup so your mouth meets the cup.  Or both, whatever it takes.  Just get the cup to your stupid lips.

Alright you did it, open your lips.  Very good.  Take a sip of coffee.  Take a real sip of coffee.  That’s not a sip of coffee, that’s like one droplet of coffee.  Take a normal-sized sip of coffee that counts as a real amount.  Okay, it’s in your mouth.  You did it.  Swallow it.  SWALLOW IT.  What is wrong with you, you usually do this every day.  Swallow your fucking coffee.

Congratulations, you’ve swallowed some coffee.  It tastes mediocre.  I guess, I don’t know.  Maybe it’s good.  I don’t know what’s good right now.  Put the mug down.  I’ll try that again in a half hour.