You Searched For: rheumatoid
If you have a choice, don’t get rheumatoid arthritis. Or testicular cancer. I heard that one sucks too.
A series of things that should be separate posts but they aren’t:
1. Paraphrased conversation between me and my rheumatologist yesterday:
Me: My feet are ouchie.
Him: That’s because you have a degenerative disease, dumb-ass.
Me: Yes, but I thought I’d be better by now.
Him: I think you don’t know what “degenerative” means. Let’s up the chemo drug that makes your hair fall out to 10 pills at a time and if that still doesn’t work then next month we’ll start doing IV therapy and self injections.
PS. That “yay” was sarcastic. I know it’s hard to see sarcasm on paper but probably the context should have given it away.
PPS. Honestly, I’m fine and can still totally function. It just feels like when you’re wearing really uncomfortable stilettos that are two sizes too small and you can still pole dance but you know you aren’t as effective as before because you keep grimacing but you’re trying to at least grimace “sexily” except you know it’s not working because that stripper with the bullet-holes in her thigh is getting bigger tips than you. And that’s exactly what rheumatoid arthritis feels like.
2. For those of you that are new, Nancy W. Kappes is a paralegal from Indiana who never comments but sends me these long, fucked-up emails that are shockingly similar in tone to the emails I send to my idols who never respond to me and now I know how it feels to get an email screaming about failed abortions and Jesus-Christ trucker hats. (It feels awesome.) (That’s not sarcasm). And Nancy fans keep yelling at me to share more of her letters so here are the latest two (starting with her take on Cinco de Mayo) and I swear to God she is real and not me and might even come to the Blogher People’s Party in Chicago so stop doubting me, non-believers:
Hey! A Holiday celebrating mayonnaise. I’m gonna totally protest and eat some Miracle Whip. Once for a party, I filled this huge piñata with M&Ms. Just plain ole colored M&Ms. Lots of fucking boxes of M&M’s. Like tons of M&M’s. Okay, so the kiddies are blindfolded and the grown-ups sneak off to smoke crack watch their little faces light up. Elizabeth (who would grow up and be a rugby star—all 95 lbs. of her—but she could run like her mother, and once she grabbed those tree-trunk legs of the other players, you had to saw her head off to get her to let go.) Anyway, she’s about 7 and a twee little thing, but she takes that stick and knocks the motherfucking piñata into the next county. Okay. So now we are knee deep in GODDAMNED UNWRAPPED M&M’S AND THREE DOGS AND EIGHT KIDS START GOBBLING THEM UP AS FAST AS THEY CAN. Fuck me running, no one told me the shit had to be fucking wrapped. So there’s dogs pooping up huge rainbow turds and the kids are all eating a % of 1/1,000 (one being the number of M&M’s and the other being the amount of dog hair.) Then their Guatemalan housekeeper who has wet her pants and passed out laughing gets on the phone in her room where she no doubt was laughing her ass off to her friends in Guatemala about the fucking-dumb-ass gringo who totally didn’t wrap the candy. Muy loco chica!!!
So the hell with it. I’m drinking jello-shots tonight.
Gotta run. I’ve scheduled a conference call with Life, God and Jesus at 4:00pm. It ain’t gonna be pretty.
Nancy W. Kappes
HOLY MIGHTY FUCKING BALLS, JJJJJJJEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEENNNNN!
Come to Indiana where all the viruses, bacteria, people with an I.Q. in double digits, anything interesting, moved out long ago with all of the goddamned fun. When I would take the grrlz to school in the am [driving 145 mph–we looked like our faces had been put in one of those 90-mile an hour wind tunnels; Claire used to claim her face didn’t return to normal until 3rd period] we would pass “Conner Prairie” and, yes, it is as hokey as it sounds—makes Rock City look like the Louvre. One bleak, cold, pitch dark morning in winter, there was an atypical lack of joviality and witty banter until we passed C. Prairie and Elizabeth bellowed, “You stupid shit-heads! What the hell kind of drugs were you on when you decided to stop here?” We still don’t know. People say “Oh, but it is such a great place to raise your children”. Bollocks. It’s difficult for tha grrlz to get products for their meth lab.
Okay, so this thing that is in Chicago in July or whatever—no wigs! Roller wigs! HA! Totally like your photo! How motherfucking awesome would it be to look out over a crowd of people and they are all totally wearing roller wigs! Sweet! Actually, if I wasn’t a lazy bitch, I would make some for you to pass out, but maybe a shit load of the Jesus Christ hats where we cross out Jesus Christ with a fucking sharpie and write in“The Bloggess.”
Well now I can’t get this goddamned font off my computer. Motherfucker, I hate these things.
I can’t stand this fucking font—it’s like “Letters to God.”or some ‘Reader’s Digest’ shit. Plus, considering the content, isn’t that an oxymoron?
Nancy W. Kappes
3. Neil Gaiman direct messaged me on twitter. Seriously, that happened. And yes, sadly, it happened because he read my post about strange-looking guys I’d totally do if I wasn’t married but still…NEIL-fucking-GAIMAN, y’all. I own 27 of his books. Swear to God. Then I told my friend Laura that Neil Gaiman had DMed me and she was all “NEIL DIAMOND DMed YOU?!?” and I’m all “No. Neil GAIMAN.” And she’s all “Oh. Who?” Then I drowned her in a fountain at the mall.
4. I’m going to spend the night on an aircraft carrier with a small group of internet-famous people next week, including Guy Kawasaki and some guy who was on Dancing with the Stars. I think he also invented the internet. I’d write about it here but all those people probably have google alerts set up for when people mention their name and I don’t want those people to find this blog before I meet them because I’m the only non-famous, weird girl going and I plan on pretending I’m someone else. Like maybe Neil Gaiman. So instead I’m gonna video blog about it later today or as soon as I can figure out how to work this new fucking computer that is trying to destroy me.
5. Neil Gaiman, y’all.
Comment of the day: Mmmmmayonaisse. Europeans don’t refirigerate it and they put it on their fries. That’s all I really know about them and also where my curiosity ends. ~MayoPie
I don’t even know how to spell the thing that I’m going to do to myself but I still feel good about it so don’t freak me out, okay?
So if you read here you already know that I deal with a host of mental issues and you can probably tell that it’s gotten a bit worse lately and that sucks. I go to sleep not knowing if I’ll wake up depressed or “normal” and when I do feel normal I’m so damn jealous of the rest of the world…people who can be around others without feeling exhausted or who can concentrate enough to finish basic projects or don’t spend thousands of dollars a year on medication that sometimes works and sometimes doesn’t. People who don’t deal with intrusive thoughts and anxiety and who don’t struggle in vain to stop their minds at night and restart them again in the morning.
In the last year I’ve done all the things. I did extensive blood work and took 32 pills a day to fix all the vitamin deficiencies and anemias and treatable disorders. I ate low carb and cut out gluten. I went 9 months without alcohol. I lost 50 pounds and started walking and swimming and I tried to write goals and make myself do normal things and honestly I do feel healthier than I felt a year ago. But I still feel fairly worthless at least 25% of the time. And if this is as good as it gets I’ll still consider myself lucky and I’ll just wait for the darkness and dread to pass on those bad weeks, but it’s really…not comfortable. That’s an extreme understatement but you get what I mean.
A few years ago my shrink told me that I’d be a good candidate for TMS and it sounded really scary so I ignored it like any sane person would because transcranial magnetic stimulation seems like diet electro-shock therapy. But turns out that I was totally wrong. I’m going to try to explain it and I’m super going to fuck it up so maybe look it up yourself but here’s the way I understand it:
So part of your brain sort of stops working properly when you’re depressed. And a different part of your brain goes nuts and works crazy overtime when you have anxiety. And your anxiety part of your brain can hijack the rest of your brain that already isn’t working and that’s how you get…me.
TMS sends electromagnetic impulses through your skull into small parts of your brain and it stimulates the part that isn’t working, like physical therapy for your brain tissue. There’s also a way to use it on the over-active part that can slow it down to normal. Supposedly it feels like a woodpecker tapping at your brain for 30-40 minutes a day for 6-8 weeks which sounds not fun but more than half of people with treatment-resistant depression (like me) see improvement, and around 30% go into full remission. I can’t even imagine what full remission would feel like but I suppose if I’m willing to have an invisible bird drill into my brain for months it’s a pretty good indication that I need help. I’ve spent the last month researching it and doing consults and last week after a million pages of paperwork and an interview a local psychiatric unit accepted me as a patient. I start treatment this month.
I’ve talked to others who’ve done it and some said it was a miracle and some said it didn’t work at all so I don’t know if this will be an enormous waste of time and money but I’m willing to do what it takes to try. And I feel lucky to live in a world where we are slowly – too, too slowly – figuring out how to treat these terrible things. I had a great grandmother I never met who had such terrible rheumatoid arthritis she was in a wheelchair at my age. Currently (knock on wood) my injections have me in remission from what was debilitating RA. I’m lucky.
This is my other great grandmother.
It seems like her terrible secret is that she has a horse head for an arm but that’s just a trick of the light. Her real secret was mental illness, and she spent the last part of her life in a mental institution where she died from a “heart attack related to psychosis and chronic brain syndrome” which is probably 50’s shorthand for “electroshock therapy” because that was one of the only treatments available for her. Again, I am lucky.
I keep Lillie’s picture on my desk top. It reminds me that it’s not my fault that my brain is sometimes broken. It reminds me that you can be broken and still love. It reminds me that some of us get better and some of us don’t…but we all leave a trace behind. Maybe it’s light and kindness and gentle touches. Maybe it’s dark and bitter and angry. For most of us, it’s both. But I’m fighting for more of the former…any crazy way I can.
I’ll keep you posted.
PS. Several people I know have had good results on electroconvulsive therapy now so no judgement if that worked for you. It’s a very different animal than it was in the 50’s. Anything that works is magic. 🙂
I’ve been a bit MIA lately so here’s a quick update about where I am and what I’m doing.
I had a severe allergic reaction that made me vomit for 10 straight hours and I don’t recommend it. I developed an allergy to brazil nuts this year and now it’s so bad that even a sliver makes my body turn inside out and my doctor was like, “Hey, interesting trivia that might kill you: Brazil nuts are the only allergies that are sexually transmitted.” And I was like, “Awesome. So I have a severe allergy AND an STD?” and she explained that I couldn’t give the allergy to other people but that if I had sex with someone who ate brazil nuts I could have a severe allergic reaction because apparently brazil nuts come out of your semen. Not whole, I mean. That would probably be noticeable. But enough to send you into shock if you have sex with someone full up on brazil nuts.
This seems like something that should be known since some people have deadly nut allergies and I suggested an ad campaign like, “Keep nuts out of your nuts” but my doctor said it probably wouldn’t fly because the people who make brazil nuts wouldn’t be pleased and I was like, “I’M NOT GOING TO LET BIG NUTS KEEP ME DOWN.” And she looked at me weird and I explained that the people who owned tobacco were “Big Tobacco” so the nut people were probably “Big Nuts” and she nodded and probably wrote a note to herself to stop accepting my insurance.
In other news about my body trying to kill me, I can’t take the injections for rheumatoid arthritis because of the latent tuberculosis that I probably only have because my autoimmune system is fairly non-existent because of the injections I take for rheumatoid arthritis, so I have to take a medicine to kill the tuberculosis but my doctor just checked my blood and the medication to kill the TB is fucking up my liver so I have to go back in for more tests to see if I need to go off the anti-tuberculosis meds which would mean I couldn’t take the RA meds keeping me out of a wheelchair because then I could get active tuberculosis. I am a snake swallowing it’s own tail. And also I’m allergic to snakes. Additionally, the pill cam data came back and the doctor was like, “You’re all fucked up but we still don’t know where all your missing blood is going. Your stomach looks gross though and you have ulcers.” Probably from the stress of all these tests. Long story short, my body is trying to kill me and I want a replacement. Or a cyborg body. I’m not picky.
PS. I’m fine. A little pathetic and very tired but it’s a relief to know the scarier things I was worried about seem to be okay. Things could be worse and I think the meds (mainly supplements, vitamins) the doctor has had me on for the past 3 months are helping. And I’ve lost almost 25 pounds on this horrible low-carb, low-sugar diet the doctor forced me to go on so I almost look like the person I photoshop myself to be on the internet.
PPS. AND my hard drive broke last week but Apple just fixed it and Victor backed it up and the books I was working on are there! I was so relieved I cried a little.
First off, several of you recently asked if I was tested for Hashimoto’s Disease and so yesterday I asked my doctor when I was in for more blood work and she was like, “Yeah, of course you have Hashimoto’s Disease. You have a lot of diseases.” And then she shrugged and went back to listing all the things I was doing wrong. And that sort of sums up my whole year.
I am feeling a bit better compared to where I was a few months ago but not sure if it’s because of the meds, diet, testosterone, supplements or the fact that since I feel better I finally have the strength to leave the house and walk or swim again. I’ve been on this awful doctor-mandated low carb/low sugar diet for a month and the good thing is that I’ve lost 12 pounds and the bad thing is pretty much everything else involved in eating low carb/ low sugar. It’s nice that I’ve lost 12 pounds but I still have to lose more and I sort of wonder if I just feel less awful because there’s now slightly less of me to feel awful and by that reasoning I will probably feel my best after I’ve been dead for 6 months.
Also, when I saw my doctor she was putting another woman on the same diet and I was like, “It’s a weird diet. You can have all the bacon and vodka you want, but no carrots” and my doctor was like, “That’s…not really the diet I put you on” I was all, “You specifically said no carrots” and she was like, “Yeah, I’m not arguing about the carrot part…” and she started talking about heart problems but I stopped listening because basically every time she talks I get a new disease.
Also, helpful hint for people on the same low carb, low sugar diet I’m on: Get some of those already roasted whole chickens at the grocery store because they’re delicious and when you rip it apart with your hands you can pretend you’re a giant and that it’s the torso of the person who put you on the low carb diet. Additionally, hummus wrapped in lettuce leaves = somewhat filling and also the saddest burrito ever. I plan on staying on the diet for another month or two but I don’t think I can do longer than that because bread is delicious and with all the vodka I’m drinking I might be getting too healthy.
PS. FUCK. I have to do blood work each year to make sure I’m healthy enough to stay on my injections for rheumatoid arthritis and as I was finishing this post my rheumatologist just called to let me know that my blood work shows that I’ve been infected with tuberculosis bacteria.
JESUS CHRIST. I APOLOGIZE TO WHOEVER I HAVE OFFENDED. PLEASE REMOVE WHATEVER TERRIBLE CURSE YOU PUT ON ME. I HAVE LEARNED MY LESSON. (Disclaimer: I’ve learned nothing, but I will pretend I have as hard as you want if you make this all stop.)
Apparently it’s not incredibly uncommon for people to carry the TB bacteria if you live in a third world country, are in prison, or have auto-immune diseases (bingo) but only like 10% of us will actually progress to full-blown tuberculosis so today I have to get chest x-rays to see if I’m more “moderately healthy ex-felon” or “Doc Holliday with a vagina.” Chances are that I’m the first (and not contagious, so no worries if you hugged me recently) but because I’m more susceptible to TB now I have to meet with my doctor to find other treatment options for my RA because my injections make it super easy to get severe TB so I probably can’t stay on them and these injections are the only thing keeping me out of that wheelchair and now I’m going to just cry for an hour.
It could be worse and I’m sure it’ll be fine but I’m just really sick and tired of being sick and tired and of having my whole life revolve around not dying. And I’m sure you’re tired of hearing about it too. Sorry. I feel your pain, dude.
UPDATED: “Your chest x-rays look clear. Your TB is just in your blood.” NOT DYING OF CONSUMPTION YET, MOTHERFUCKER! This is a weird thing to celebrate, but I will take it.
Remember last week when I said I wasn’t sure if I’ve been dealing with a long-lasting depression or something else? And I was waiting to go to the doctor because every time I go it ends with “You’re probably already dead. Or you just need a nap. Hard to tell. Let’s do more tests. Give us all your blood.” But I decided to go ahead and get some blood-work at my rheumatologist’s office and then they called me to say that my results were weird and that I had “maybe lupus”. It was a shitty phone call and I’ve been trying not to think about it because first off all, there’s no cure for lupus so I’m not even sure why it’s helpful to know that I might have it and secondly, “maybe lupus” is pretty close to “maybe not lupus” and I’ve had “maybe not lupus” most of my life and things have worked out so far. The one good thing that came out of this is that my test results definitely showed that something was wrong with me and there is a terribly wonderful thing to have an affirmation that it’s not all in your head. Except that it is all in my head because that’s where I feel the worst. Catch-22. Or maybe not. Part of this is that my head isn’t working correctly even with my ADD drugs so maybe it’s Catch-21? I’m not good at math.
But what I do know is that “maybe lupus” is pretty similar to “maybe immortality” because neither are confirmed so instead of focusing on the first I’m going to focus on the latter because I’ve been alive all of my life and statistically that’s the way that immortality begins. Plus, I sleep all day and I can’t sleep at night and I’m anemic so I’m adding “maybe vampiric” to my list. Also, “maybe Spiderman” because apparently my antinuclear antibodies are all fucked up and anything with”nuclear” in it seems like something that would cause me to become super-human. Victor says “nuclear” and “radioactive spider” are not the same thing, but Spiderman isn’t a documentary, Victor. Real science is different than comic books. I suspect he’s just jealous that I’m about to get my mutant abilities soon, which is not as good as getting an admission to Hogwarts, but a million times better than “maybe lupus.” Unless my super-human ability is “Super-Lupus”. I’m not sure what “Super-Lupus” would look like but (aside from being great fun to say) it doesn’t sound good. I’m crossing my fingers for the vampire thing. Or maybe I’m like that guy on X-Men whose super power was that he could grow back his arms if they were cut off. He probably didn’t even know he had a super power until someone chopped one of his arms off and then he was like, “Holy shit. What a terrible super-power.” I’m not going to test it though because it’s bad enough to have “maybe lupus” without adding “also her arms didn’t grow back after she chopped them off to test if she was a mutant.”
So, long story short, there’s something wrong with me but we knew that already. My rheumatologist wants me to see all my other doctors to test my hormones and other bullshit so they can tell me I have “maybe testicular cancer” or “maybe your thyroid hates you” or “maybe you’re just broken” but I’m too tired to do that now. Probably because of this “maybe lupus”. So instead I’m going to rest for a bit, which is exactly what I should do if I’m coming down with “maybe vampirism”.
PS. Tell me I just need to get out more and stop eating gluten and I will kick you in the vagina. And if you don’t have one I will make one. From all the kicking.
PPS. Even if I do have lupus (which seems practically impossible to diagnose) it may be medically-induced lupus because the meds I’m on can make your blood a bit toxic and bring on lupus, which seems ironic because I’m taking anti-tumor injections to make my body stop attacking myself and that drug might be causing lupus, which causes your body to attack itself. So if I’m still sick in a month I’ll switch to a different medication which might cause my “maybe lupus” to go away but also might cause my “definitely rheumatoid arthritis” to return. My point? If you are healthy today go and enjoy the shit out of this day because it’s a godamn gift. If you can’t think of anything to do to celebrate being normal then find someone who isn’t and bring them lunch or ask if there’s anything you can do to help because you have no idea how often the people around you go hungry because they’re too tired to leave their desk. If you’re not healthy then I tip my hat to you and remind you that it’s going to be okay, and that you aren’t alone. Life isn’t always easy, but it’s always worth it. Even for vampires.
PPPS. This post needs a happier ending. Inserting medicinal raccoon gif. “LET ME KISS YOU, KITTY.”
PPPPS. I’m going to be fine. I’m having more good days than bad lately and I have a great support system and I actually have good, exciting news that I’ll be sharing with you as soon as my head is working enough for me to write about it properly. I’m just venting. Thank you for listening to me. It does wonders to know I’m not alone.
Several weeks ago I had surgery to stitch up a hernia in my stomach. It was supposed to be very simple but the recovery for me was horrific. Worse than labor, or gallbladder surgery, or stepping on a floor made of loose LEGOs. I had complications and developed a seroma, which is a “tumor-like collection of serum from damaged blood and lymphatic vessels after significant tissue disruption or trauma.” It sounds worse than it is but it hurts like a bastard and I’d end each day exhausted and teary and unable to take complete breaths without flinching. I might need more work done to fix it but they often go away on their own so my doctor decided to wait. So we’ve been waiting. And this weekend I was able to walk around and leave the house. And Monday I could sit up from laying down without wanting to scream. And Tuesday I felt almost normal for several minutes at a time. And today, if I’m not moving, I feel good. Really good.
The point is…today I feel okay for the first time in what feels like ages, because time – when coupled with pain – drags by so slowly. I still hurt, but more like someone punched me, or like other people probably feel when they do too many sit-ups. I can finally sleep without waking myself up thinking I’m being stabbed, and I can completely forget the pain for several minutes at a time. That sounds small, but if you’ve ever pushed through pain that doesn’t stop for weeks at a time then you know the blinding relief that comes with a few minutes of peace that doesn’t accompany the nauseous dizziness of narcotics. There’s a moment when you feel aware of the absence of pain, and that simple moment is such a wonder that it’s practically euphoric. And you remember what it’s like to not hurt. What it’s like to live. And it is so beautiful there aren’t words for it. It’s so incredibly easy to forget what it’s like to breathe when you’ve been holding your breath for so long.
It’s the same thing that happens when I come out of a rheumatoid arthritis flair-up that puts me in the hospital. It’s the same relief I feel when I pull myself out of a depression that lasts longer than a week. After a while you forget exactly what it’s like to feel good again, but then when you come out the other side, it’s dazzling.
I’m writing this to remind myself of the light. Of the dazzle. Of the fact that it’s worth trudging through the muck because the way out is so much better than you can remember. It’s like the first shower after a week in the woods, or the sun on your skin after a month of night. I’m writing this because I know I’ll be in dark places again and I’ll forget how wonderful it is to emerge. I’m writing to remind you that if you’re struggling now, it will be good again. It will be so much better than your lying, forgetful brain remembers. And I’m writing to tell you that if – right this moment – you are healthy and well then you should stand up and do something wonderful to celebrate it. Go walk barefoot on the grass. Treat yourself to a good book. Call or visit someone you love. Make plans for a trip. Eat a chocolate ice cream bar. Enjoy the sun.
And if you don’t see the sun right now, keep trudging. It’s there. It’s blindingly magnificent. And we’re waiting for you. Promise.
Just remind me of this the next time pain or depression lies to me.
Conversation between me and my husband:
me: My feet hurt
Victor: Your feet always hurt.
me: Because of all the ass I’m kicking.
Victor: *raised eyebrow*
me: And also because of my rheumatoid arthritis.
Victor: That sounds more accurate.
me: And I might need new shoes.
me: And a piggy-back ride.
me: And a step ladder so that I can get on your back, because I don’t think I can jump that high anymore without both of us getting injured.
me: I’d settle for a wheelbarrow.
me: Not the thing we did in elementary P.E. where you carry my legs and I walk on my hands. I mean a real wheelbarrow. One that you could push me in.
me: It’d be like a wheelchair. But whimsical.
me: But we’d need to fill it with pillows, or sedated cats. And some ziploc bags filled with frozen margaritas. And some maybe streamers to make it festive. And a flare gun for whenever you leave me in the middle of the grocery store and forget what aisle I’m on.
Victor: I wouldn’t call it “forgetting.”
me: But I’m not sure you can bring a gun in a grocery store, so maybe some just roman candles and a lighter. And some sort of bullhorn.
Victor: You know, they have these cool new things called “benches”. You just sit your ass down on them when your feet hurt.
me: Oh my God, you are so mainstream.
Victor: You keep saying that like it’s a bad thing.
me: I’m just saying, keep the wheelbarrow idea in the back of your mind. In case you want to surprise me by being awesome one day.
Victor: With a wheelbarrow?
me: Yeah. With a wheelbarrow. Most girls want diamonds and fancy summer houses. I just want a goddam surprise wheelbarrow every now and then. You are incredibly lucky to have me.
Victor: That’s what I keep trying to tell myself.
Two years ago they hadn’t found a way to treat my rheumatoid arthritis. Two years ago I was a usual visitor to the emergency room when my pain would get so bad that only narcotic injections would stop it. Two years ago my vacations always ended in wheelchairs, I took drugs that made my face unrecognizable and made clumps of my hair fall out. Two years ago I was obese, because my meds made me swell up and because just walking across the room made me want to scream. Two years ago I thought that I was a burden on my family because I spent more time in bed than I did out of bed.
A year and a half ago my doctor got approval to start monthly injections. They worked. They don’t work for everyone. I pray that they continue to work. I was able to walk. I was able to move. I was able to live. I lost 46 pounds. I got rid of the steroids. My hair started to grow back. The pain that used to be a 9 is now a 2.
Yesterday my doctor looked at my x-rays and said that some of the deformation we thought would be permanent had healed. And she said a lovely word.
It’s a lovely word for two reasons. One, because I remember the pain…and in the place where that pain was is a space left for gratitude. And two, because it gives me hope.
10 years ago my mental illness got so bad that I finally got help. At first it was worse, then it was better, then worse again. Now I fluctuate, waiting out the darkness, reminding myself that depression lies and that it’s a medical condition that I never asked for, quietly battling with tiny demons in my head…until it suddenly passes and the drugs kick in or the seratonin settles or the demons get bored and then HALLELUJAH I’m alive again and things are good and I remind myself that this, this, THIS is real and this is worth waiting for each time.
One day I know that they’ll will find a cure for whatever it is in my head that randomly and unexpectedly clouds things up and makes life turn into a pale, cardboard imitation. One day they’ll find a cure. A drug that works. A shot that makes the demons go away.
And I cling to that. Because that, my friends, is a beautiful word.
PS. I wrote a week ago about how I’d been diagnosed with a severe b12 deficiency that might be causing some of this depression. I’m on pills and shots and massive amounts of other pills to help the b12 work and I feel okay today after a week of slight craziness. 14 pills a day isn’t ideal, but I’m worth trying every option. You are too. Keep breathing.
PPS. Back to silly, cat-focused ridiculousness tomorrow. I just needed to write this. Thank you for listening.
If my head wasn’t in a weird place I could make this funny, but right now I’m sort of messed up and it feels like lying not to write about it.
A few weeks ago I decided to get a head-start on the litany of exams that come around when you’re 40, so I had a thousand (12) x-rays, and eleventy billion (6) blood draws, and one (1) weird boob exam. The mammogram thing wasn’t that bad and was way less uncomfortable than when you swallow a Dorito wrong. (That’s my baseline for pain.) It’s just weird to have another woman curiously man-handling your boobs, but I suggest just realizing that this is what she’s chosen to do for a living, or maybe just pretend you’re in college again.
The nice thing about the mammogram though was that I got to fill out a form with boobies drawn all over it and I had to mark any scars I had, and I have one right under my right boob from when I was stabbed and when the mammographer looked at the form she was like “YOU WERE STABBED IN THE BOOB?” And I was like “No, I was stabbed under the boob. By a doctor. During emergency surgery.” And then she just looked at me like that didn’t count, but it totally does because either way, someone stuck a knife into me on purpose.
Long story short, I don’t have breast cancer. Yay! But they found some other growth in my neck that’s causing abnormal labs and probably needs to get biopsied. Not quite as yay. But I had the same growth 10 years ago and got it biopsied and it wasn’t cancer then and eventually it just went away, so I suspect it’s a silent twin that’s just swimming around in my body and fucking shit up.
The good news is that my rheumatoid-arthritis-miracle-drug has not only kept me out of a wheelchair for the last year, but the damaged bone deformation is healing and my bone-density is now crazy high. That’s a good sign, but I suspect it also means that my bones are enormous and are making me fat. Thanks a lot, bones. You’re a bunch of assholes. But the upside is that when my doctor points out that I’m still a bit overweight I can blame the fact that I LITERALLY just became big-boned and that she’s giving me mixed messages. (I know people with RA are going to ask what I’m on and it’s monthly Simponi injections. There are lots of side-effects and they’re expensive and don’t work for everyone, but they work for me.)
There were also the expected number of blood diseases and clotting disorders and auto-immune diseases that popped up, but at this point I’m sort of collecting those sorts of things, so nothing majorly upsetting. The thing that did bother me though was something that technically shouldn’t have messed me up as much as it did. Turns out I have a severe b12 deficiency. They don’t think it’s pernicious anemia (which is a terrible problem with a very fun name) but it’s enough that they immediately started me on injections and pills and a warning that this level of b12 deficiency often causes delirium, which explains a lot. Technically it’s a good diagnosis, because it would explain my chronic fatigue, and it can cause depression and symptoms of ADD, and multiple miscarriages, and of lots of other things I’ve struggled with, but it’s also strangely upsetting to find that one damn vitamin might have been what’s been making me miserable for years. And more upsetting is the fact that I still feel exactly as exhausted as I did before we started the treatment, so God knows if this will even work or if it’ll just be another bullet-point in my list-of-shit-that’s-wrong-with-me.
I should be happy that things weren’t worse, and relieved that I have the resources to diagnose and maybe fix the problems, but today I’m just sick and tired of being sick and tired, and I can’t find a way to end this paragraph.
I blame the delirium.
Me: I’m having a nervous breakdown.
Friend: I’ll bring the wine.
I’m not sure which wine pairs best with a nervous breakdown, but at this point I don’t really care, because wine. That seems like a sentence fragment but it’s not. “Because wine” is a full sentence and is also an answer to just about anything you could ever ask. “Why should I leave my house?” “Why am I crying at an insurance commercial?” “Why do my cats all have mustaches drawn on them?” BECAUSE WINE.
In fact…why does this post exist? Because wine.
And also because I’ve been fighting through a bitch of a wave of depression for the last several weeks and I’ve been slogging through the days and going through the motions and waiting for this shit to finally break. I’ve been forcing myself to leave the house as much as I can and congratulating myself for showering and moving and breathing, but it’s still hard as hell. I’m not alone. In the last few weeks I’ve gotten tons of comments and emails and tweets from people all feeling equally helpless. And that sucks. It sucks for them, and it sucks for me and it sucks for every person out there who can’t just fix us. There is, however, one bright point about getting those messages from others sailing their own rough waters…I can – without doubt– tell them that depression is lying to them and that things will get better. And then I have to admit that the same thing applies to me…even though at the time I’m fairly sure my emotions are dead forever.
And then, just as quickly as it came, it starts to lift. Yesterday I felt human again for almost two hours. It’s amazing how much you’re missing in a depressive state until you start to come out on the other side. It’s like breathing again after being underwater for far too long. The depression is back again now but I had an hour this morning when I was me again. And a few minutes ago I called a friend to come over to visit. That sounds like a stupid, small thing, but it’s not. It’s big. It’s huge.
When I’m in a depression I want to write about it, but I usually can’t. I’m too overwhelmed and paralyzed and exhausted. I end up writing 100 angsty drafts that never see daylight and I convince myself that no one cares. It’s not true. People care. They care about me and they care about you. If you’re feeling alone, you aren’t. Millions of people struggle with suicide and depression and mental illness. We keep taking pills. We keep talking to shrinks. We keep each other alive. We remind ourselves that depression lies. We keep breathing. And eventually the clouds metaphorically part and – as if by magic – we get a blast of normalcy and remember how amazingly wonderful it can be to feel life instead of suffer from it.
Yesterday I started feeling life again, and it felt wonderful. And I’m writing this to remind myself that it does pass, and that the miasma surrounding you now won’t always cling to you. It will pass for me and it will pass for you.
Keep breathing. Keep living. You are worth it.
PS. This seems unrelated and maybe it is but I’m including it anyway because wine. A few years ago my blog posts were peppered with humorous stories about my severe rheumatoid arthritis. I’d be bedridden for weeks at a time. I was in and out of hospitals. I spent most vacations in a wheelchair. It took many years and lots of different meds and doctors before they finally found the particular drug that cured my symptoms. It isn’t perfect and it’s crazy expensive and involves a lot of injections and constant work, but (knock on wood) I haven’t been in a wheelchair in over a year. I had started to think that my whole life would just be random weeks of pain and that I’d end up hobbled and miserable, but then we found that one drug that worked for me. And if there’s a drug out there that could save me physically then I have to believe that one day there will be one that could save me mentally.
I’m holding out for that miracle. Stay here and keep me company.
PPS. If you’ve found something that works for you, feel free to share it. For me, it’s music. This song has been on replay for me all week and it helps. Maybe it’ll help you too.