Sometimes it’s really hard to write about other people’s happy times when it reminds me of when I was strong and thought I could do almost anything.
Sometimes it’s an escape, but sometimes it’s just a really rough reminder of how hard I’m struggling right now.
The true answer to “How are you” behind the cut. It ain’t pretty.
The nausea is bad right now. Every week it’s a little worse, Saturdays. The dosage hasn’t changed, once a week I sit on the toilet lid while my husband is in the bathtub, and I swab alcohol between the stretch marks on my belly while he reads some old book or another (literally old, he’s on this kick and I think he’s up to the late 18th century? Maybe 19th? Idk.)
I swab the top of the tiny vial of vile chartreuse poison. It’s thick: in the little glass container it rolls thinner than honey, but thicker than oil.
I pull out a syringe and draw .8 ml of air into it to push into the vial, in order to not create too much suction inside when I’m trying to pull the thick liquid into the needle.
The flashback comes when I get ready to inject, every time. When I was pregnant, I pushed a much larger amount of fire into my belly twice a day, every day, for most of ten months. It hurt, it bruised, and it kept me from clotting, and it meant that I survived a pregnancy without clots, long enough to give birth to a bundle of ornery sunshine.
Methotrexate does not keep me from clotting. This is poison, and it’s only once a week, and the needle doesn’t even hurt going in. It doesn’t hurt pushing the medication in. But I know what’s coming.
I do this before I head to bed. It’s almost always six or seven in the morning, because I dread it, and I want to milk the last of the “feeling okay” I’ve finally managed to achieve by the time I’m six days out from the shot. So I stay up too late, and then collapse into bed and cease to function for the rest of the weekend.
I sometimes think that I’m making too much of it. It’s only a little bit of chemo. For cancer, it would be 10-25 ml, not .8. It could be worse. I could be taking it orally and killing off my gastrointestinal tract. With the blood thinner I’m on, that seemed like a bad idea, so shots it is.
When I let myself think that way, I do ill-advised things like decide I can fix shit and push through, like I did today when there was a crisis in the house over the fact that a DVD had come from the library as a blu-ray, for which we have no player. So I went to a store that had no electric cart to buy things that are literally way more expensive than a season of Game of Thrones could ever be, and came home to discover that there was literally no way to install anything on the computer that was supposed to get it. I sat there for an hour trying, on the wrong chair, which I should not have done, and then spent another hour trying to figure it out on a different computer. I emerged victorious, with a migraine and a blossoming fibro flare.
I take… take feels like the wrong word. I subject myself to methotrexate in order to keep my immune system under control, to prevent my body from waging war on my gut, my liver, my salivary glands, my lacrimal glands and the membranes around my knuckles. It doesn’t work nearly as well as steroids at making me feel good, but might have fewer side effects long term? It’s hard to say. Something is going to kill me, and whether it’s the rheumatoid arthritis or the medications to fight the rheumatoid arthritis, or the blood clotting disorder, or the meds I take to prevent clots from forming (when the real problem is that once clots form, they just don’t STOP)… I don’t know. My grandmother lived to be 101 and right now that feels like too damn long.
I have children. I have a husband. They need me, god knows why, and so I stay. I spent most of my time with my son today yelling at him. He’s five and it’s absolutely not his fault that my skin is so sensitive that touch is painful to me. I’m sure there’s probably a more graceful way to tell him that I just spent every last bit of energy I had making a couple of eggs that may or may not stay down and no, I don’t have the energy to deal with him wanting a new packet of salami and cheese when he hasn’t finished the cheese from the last one. He spent most of the day hanging out with his dad and his oldest sibling.
My daughter is fortunately well cared for. We are protected from each other, but I wonder often what she thinks of our new reality, where she always has someone, but it’s almost never her mother because I can’t risk her feet or her teeth, because I can’t risk my temper or my lack of coping. Because I can no longer lift her, this child that I carried on my back for three straight years because she hadn’t learned to walk yet. I only stopped because I ended up with a clot and couldn’t lift anything.
Writing has been hard this week, because when I write I draw on my experience, and right now it hurts to remember that once, I was a dancer, once I was a competitive swimmer, once I stood in front of people trying to ignore a bigot and roused them to speak out against him.
When I write I remember the things I could do and the places I went. I did so much. And it feels like that is over. The last convention I went to hurt. I had a scooter, and pillows, and a hotel room to retreat to, and it hurt so, so bad that I now associate conventions, which were fun, once, with blinding pain.
The last one I went to was just before I was diagnosed. My joints were on fire. I thought I would need a wheelchair forever afterwards.
I’m afraid to go back to the doctor and tell them how much the methotrexate is hurting me because the alternatives are thousands of dollars per month.
We can afford it, I just hate being that much more of a burden. That money was supposed to let us enjoy my husband’s retirement. But the idea of going on a cruise? I don’t see it happening and I don’t know how to break it to my husband that it might not be possible.
I keep feeling like there are things I should be doing, like I should be trying, TRYING to exercise, like I should be trying to do something about my weight even though I know that trying to do something about my weight is not actually going to result in making healthier choices. There are barely any foods I can eat. No foods that are unambiguously healthy for me. The last thing I need to do right now is tell myself I can’t eat the few foods that don’t actively make me sick.
But today I tried to push through and I feel like I’m going to lose the entire week to it.
I have no extra resources for social niceties. I’m completely social-scripting my responses to comments on my fic (please keep making comments, it matter so much, just understand if my responses are short.) I’m making huge social errors because I’m misreading things because the only way I social is by applying cognitive effort and I just don’t have it right now.
I hear about people living and doing relatively normal things with RA. But my RA was not correctly diagnosed in a timely fashion. In retrospect, I think it started in 2014, but they didn’t have the right test in common usage so they shrugged and attributed my symptoms to “I don’t know some sort of inflammatory process probably related to EDS” and so by the time I was diagnosed, 29 joints were on fire and the antibody levels were so high they could not be accurately measured.
A lot of people with RA just have RA.
I have RA, EDS, Hashimotos, Sjogren’s, fibro, sleep apnea, allergies, IBS, and Factor V Leiden. I’m probably autistic, definitely neuroatypical, with massive sensory issues and a brain that does amazing things in a lot of areas and is utterly inept at the things people expect to be easy. If I write people well it’s because I’ve been studying human beings like an anthropologist since I was three years old. (I gave my mother a sheet of paper on which I’d drawn a wide variety of facial expressions because I was trying to understand facial expressions.)
Someone asked me once, “Have you considered that your problems might be psychological?” I laughed in his face. The idea that I could, via mental illness, magically clot the blood in my veins or sabotage my own thyroid? I mean, I absolutely have anxiety and intermittent depression issues, but ffs, those things don’t make my salivary glands swell to the size of golf balls. I get tired because my body is attacking myself, and exercise makes that process worse because it fucks with my immune system which is pretty good at fucking its own self up.
Someone asked me once why I pursued so many diagnoses. The answer was, “Maybe if they figure out the right one, they can fix something.” It’s not because I *like* collecting diagnoses. I miss being able to eat normally. I miss being strong and physically fit. I used to swim 10 hours per week. I used to ride horses. I used to go camping and loved it. I used to be able to build things with my hands.
I have to remind myself not to do those things.
I have to, because pretending I’m not sick makes me sicker.
Every shot I take seems to push me into a flare. Not a huge flare, just a few joints reminding me that this isn’t over. That this will never be over.
I got through the twice-a-day-Lovenox routine because I knew it was finite and i knew there would be a baby I wanted very much at the end of it.
I will be on methotrexate or something like it for the rest of my life.
It feels like poison. The sneaky poison that you think isn’t poison until your lips go numb even though you didn’t drink it. And then I sleep and think, “Well, at least I can sleep.”
And then I wake up and my whole body hurts, and the exhaustion pulls at me so hard, and I’m supposed to eat something so that I can take the small dose of steroids I’m still on, and I don’t want to eat because my stomach is on a boat.
Saturdays might as well not exist. Sundays aren’t much better. By Monday I can drag myself to physical therapy. By Tuesday I can drag myself to the grocery store. By Thursday I start to think, “I really should exercise” and on Friday I fight dread about the coming shot.
This morning my husband said, “I blame Trump.”
And I said, “You might as well. Stress increases inflammation, and most of my stress in the last six months has started with That Man.”
It is no mystery to me that so many people died last year.
The mystery is how we keep going when it’s hard.
“How are you doing?” asks a cashier. They all ask this. Everyone, locally. It’s a reflex thing.
And my brain won’t let me give the flip lie of an answer. I can’t say I’m fine. I’m not fine.
“I’m doing,” I echo. (Right now this feels like a lie, too.)
Sometimes they say, “How are you today?”
And I just say, “I’m here.”
Sometimes what doesn’t kill us just doesn’t kill us (yet).
I’m not stronger, I’m just not dead.