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.

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Stand Together, Be Strong

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

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

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

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

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

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

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

This. Will. Not. Break. Us.

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.

Compassion for Mr. Crankypants

There are times that I am cranky, and often, I take this out on others.  These… ehm… “receivers” of my anger often have no idea what kinds of emotional and physical pain I feel, so I assume they think ill of me.  But worse, I find myself judging people when they are rude to me and being completely oblivious of my hypocrisy.  Where is my compassion?

In our society, there exists an unspoken belief that compassion requires some knowledge of a person’s situation.  I may see a boy with a badly burned leg on the news whose injury is a product of war, thus, my response is to feel sadness for him because he is innocent.  I feel sympathy and compassion because I am not a sociopath.  But I do not understand why I need to know this boy’s background to feel something for him.  Recently, I’ve tossed around the idea that maybe true compassion requires a leap of faith in the goodness of others.  Did you see my commentary on the hearts photo?  A belief in the goodness of others is something I lack.

Let’s throw cynicism and misanthropy aside for just a moment (don’t worry, you can pick it back up later, I’m sure I will).  We can begin with the wild premise that when people are shitty, there might be a reason for it.  You know, some people are capable of enduring great suffering silently without losing their ability to function normally in society—to treat other people with respect, to continue on with the social niceties.  Those are some tough motherfuckers and I tip my hat to them.  But others hurt so deeply they lose that capacity.  This may not be a sign of weakness, but that of a deeply injured person, whether those injuries are physical, emotional, spiritual, or any combination therein.  More often than not the people who need compassion are not those whose ailments are obvious.  The people who suffer in silence need it.  They need your caring and hat-tipping and they need second chances.  I’m not saying that having this kind of mindset is easy.  After all, it is much simpler to believe that a grumpy old man–let’s call him Mr. Crankypants–mumbling to himself rudely about you in the supermarket produce aisle is an asshole… more difficult to imagine that he may have lost yet another friend (or a family member or spouse) to death or illness.  Maybe Mr. Crankypants has arthritis and you walked in a direction that forced him to move, causing him pain.  Maybe he is poor and can’t afford enough food.  Maybe his children don’t contact him often, or maybe Mr. Crankpants has no little Crankypantlet children at all and regrets it because now he is alone.  We can’t know.  We can only note his behavior and decide how to respond.  I am a person whose instinct is to say, “Fuck you, butthole!” to someone who is rude to me, which is terribly unfortunate.  Because as I’ve hopefully demonstrated, rudeness may very well be a symptom of something that, if only we knew about it, would instill compassion in our wretched, acrid little hearts.  I urge myself and anyone else to take a breath and think before screaming, “Fuck you, butthole!”  You never know.  Mr. Crankypants might be a crankypants because the world withheld kindness, as it has deprived us all of the comforts we deserve.