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.

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.

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. πŸ˜› 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!!!! πŸ˜€ πŸ˜€ πŸ˜€
  2. I can focus on getting better instead of focus on finding out what’s wrong!
  3. Now people will believe me! πŸ™‚
  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. πŸ˜› 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. πŸ™‚

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 doneΒ 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.Β 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…