So a few weeks ago I found a lump in my neck. I ignored it because that’s what I do but it’s gotten worse and now I can feel it when I swallow and when I breathe. I wake up coughing and choking. It doesn’t hurt. It’s just really uncomfortable. Like being lightly strangled by your imaginary friend. And the anxiety of feeling unable to breathe makes my throat constrict, which makes it worse and that’s about the time I convince myself that my entire body is made of cancer.
It’s probably not though.
I saw my doctor and hoped she’d just say it was all in my head but turns out it’s all in my neck and she took so much blood that the tubes literally stopped filling up, which the nurse said was just a strange problem with the tubes but which I’m pretty sure is a sign that I’m now a solid. Today I have an ultrasound to look at my neck growth and honestly I’m a little nervous and I’d like for someone to tell me that I’m going to be fine.
Chances are that it’s my thyroid becoming extremely enlarged, which makes sense because I also have Hashimoto’s Disease and that causes a lot of weird problems. It happened once 15 years ago (on a much smaller scale) and I had to go through a lot of biopsies and ultrasounds before they were able to tell it wasn’t cancer. The process was grueling but it all worked out so I’m crossing my fingers that this will all work out too, but even if it’s just an enlarged thyroid it’s a concern that it’s pressing on my windpipe so they may have to remove it, or part of it, I guess? And that seems scary again.
So I guess what I’m asking is three things:
Send me good thoughts if you have them to spare.
Tell me I’m a hypochondriac and this is all very normal and that I’m being a grown-up by checking this out.
Tell me if you’ve had your thyroid removed. Was it terrible?
Sorry this isn’t a funny post. I’m just super distracted and I can’t not think about it because breathing and swallowing are two of my favorite things and my neck is being a real dick about it.
Happiness. Every day I have it drilled in my head…figuratively. And now sort of literally.
My 15th session of transcranial magnetic stimulation was yesterday. My 16th, 17th, 18th and 19th this week. Another 20 lay ahead. They still hurt a little, the magnets drilling and tapping so loudly I have to wear earplugs. My blinking tic beats out an involuntary pattern with the rhythm and my eyes water. Afterward my skull feels misshapen, my face stiff as I make strange faces on the long drive home. But each day I feel stronger and instead of feeling like my mental illness is being beaten into submission each session, it feels different. I feel the pulses shooting goodness into my head. It’s worth the pain, I think. The slow tapping on the right side of my brain where my anxiety lives. It whispers with each pulse: YOU. WILL. BE. STRONGER.
The furiously fast drilling on the left side of my brain where my depression lives: YouWillBeOkayYouWillBeOkayYouWillBeOkay*breathe* *remember to breathe*
I feel different.
On Sunday I think I looked almost like a normal person. I was still scared. With each step I knew I could fall back, that the exhaustion and fatigue and anxiety could hit me at any second. My daughter knew too…and she was amazed at each step I took. Yes, we can go get lunch. Yes, I’ll take you to get new shorts. Yes, we can go to the mall, the candy shop, the book store. Yes, we can swim and listen to show tunes and sing. Yes, we can play a game. Yes, I’ll read to you.
Yes…I’m enjoying this too.
It was the most I’ve done in a single day in…longer than I can remember. And instead of ending the day feeling rung-out and empty and raw I felt…normal? Is this what normal looks like? Because if it is I want this.
Normally I struggle with simple things. I make strange choices. The strength is takes to shower or the energy it takes to eat? You don’t get both so choose wisely. Every action takes such work…as if living with mental illness is like waking to a new different disability each day. Someone else could quickly do the simple tasks of the day but I am hobbled. It can take hours for me to do what could be done in a good day in minutes. But not today. Today I feel strong. I feel guilty for being able to leave the house without xanax to dull the world…for being able to accomplish the things that normal people do every day. And I feel angry that this comes so easily. I shouldn’t. I should feel lucky and blessed but then I remind myself that it’s not just happiness coming back….it’s all of the emotions. It feels like cheating, like I’m on some illegal drug or cheating somewhow…stealing these emotions I forgot were so strong. And maybe that’s for the best because it means that I appreciate how much mental illness takes from me when it is present and how much it’s worth fighting for relief. Even with it hiding I know it is a terrible monster I will always fear.
When this monster shows its face I fear the world, I fear myself. I loathe the terrible things that I see and I am too paralyzed to even discuss the news items that stick in my head. My dr tells me it’s not safe for me to dwell on these things and it’s true…my intrusive, compulsive thoughts makes me obsess about terrible things that happen in the world. She reminds me that it will suck away my life if I allow myself to be paralyzed with fear and dread. I am not built for rebellion. Not yet. She reminds me to look for the good in the world because it is real even if it doesn’t get the same press and this is a very good idea for people with broken brains, but mine keeps repeating “It’s not enough. We’re all going to die. The world is awful and I am a part of it.”
But now, today, it’s saying something different. It says that the world is a terrible place…sometimes. And filled with terrible people…who can change. But suddenly I’m reminded that there are more people who I know who care, who are empathetic, who fight for others in quiet and loud ways. I see that I am not alone. I see how terrible it would be to feel the terror of the world by myself…and how heartening it is that I can see so many people doing small and beautiful things to make the world better. I’m reminded (for the first time it feels like) of how alone I would feel if I was the only one who felt disconsolate or frustrated. I’m reminded of how lucky I am to be surrounded by people around the world who care about others. Who are here for each other. I think I knew all this before. But mental illness changes “knowing” and “believing” into two very different things and I can breathe for a moment and know that it will be okay.
It’s an epiphany that brings me such relief. It’s going to be okay. Not perfect, never perfect…but we will be okay even when we’re not okay. Even when we’re wanting to be better than we are. It’s okay to take a breath. To love and celebrate and smile and mourn and dance and cry and start all over again.
After a Sunday of driving and shopping and dealing with real live people in the loud world I come home and I am so surprised to find that I am not exhausted. My daughter tells my husband how much we did. “Mom did so great!” she says. As if I am the child. And it makes my heart swell and break at the same time. But I will take this. I don’t want to lose it. It feels so shaky. Like holding on to magic you know can’t be real.
My husband mentions traveling this summer…the beginning of the same argument we have had for years. I can’t travel. It’s too taxing. I would get sick. I would end up in the same wheelchair I’ve ended too many trips in. I would slow them down. They go off together on adventures and I am sad but relieved. I’ve missed many trips. I missed the first time my daughter saw Japan. I watched them on FaceTime from my self-imposed jail as they explore the world.
But I will not miss the first time she sees Europe. Because it will be the first time I see Europe too.
I think it surprised Victor, how quickly I said “Okay. You know what? I’ll go.” He and Hailey held their breath as if I’d take it back. I hold my breath too. I wait for my body to say, “No, this was a trick. It’s not real. You don’t deserve this.” But it’s not saying that. Not yet at least. It’s saying, “I want to go. I want to live. I’ve been waiting so long.” It says “Let’s see Scotland and London and Paris. Let’s walk on distant islands and walk through mountains and see the things that I can’t quite imagine really exist because I never thought it would have been possible to see them. But maybe, a little voice inside my head whispers, maybe it’s possible.
Maybe.
Maybe this is real. Maybe it’s not forever but it’s for today and if it’s real today then there’s a chance that any day in the future could be like this one…full of promise and energy and an ease I feel like I’ve stolen…one that I feel jealous of even as I experience it.
Next month I will have completed 35 days of TMS treatment for anxiety and depression. And to celebrate (knock on wood) I will see things I never thought possible. Some of them in distant lands, yes, but many of them the lovely, simple things that the rest of the world takes for granted. I will take my daughter. I will say to her, “Look. Here is the world. It’s been waiting for you.”
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.
Lillie
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 recovered from the flu (HELL YES) just in time to have debilitating lower back spasms (WTF?) and after a few days of pretending it wasn’t real I finally went to the doctor and she gave me muscle relaxers and made me go to a “sports therapy doctor” and that seemed weird because I don’t do sports, but I’m an expert at therapy so I thought maybe it would work, but when I was in the waiting room I heard a woman in with the doctor and she was making terrible involuntary sounds that normal people don’t make unless they’re being crushed to death by a large animal or having really aggressive sex and I didn’t want to do either of those at the moment so I just ran out of the waiting room because apparently I’m eight.
Also, my feet have been numb and weird and the main symptom is “I feel like I walked on invisible scotch tape and the scotch tape is stuck in between my toes and it’s peeling off when I walk but not entirely and I can’t take it off because it doesn’t exist and is this a thing or am I crazy?” and turns out that’s totally a normal (?) thing called Morton’s Neuroma and it’s caused by your nerve getting stuck between your inflamed feet joints. And then I asked my doctor if there’s also a diagnosis for “when you know you can’t start fires with your mind but you still keep trying because maybe this time it’ll work” and she said there’s not a diagnosis for that, but she’s wrong because it’s called optimism.
Me: Dude. The news just said that snow leopards are no longer endangered, so guess what’s for dinner?
Victor: Are they no longer endangered because there are more of them or because now they’re extinct?
me: Oh. I don’t know. Damn. My joke just went from dark to tragic.
PS. They’re not extinct. But they’re still not in great shape. Don’t eat them.
PPS. The last 6 months have been filled with “I’M DYING” illnesses and procedures and invasive bullshit but I have a few updates.
I still don’t have answers for all the anemias but they’ve at least ruled out all the scary stuff and are settling into “Well, you’re just fucked up but you’ll probably live.” My liver is rebelling from the effects of this fuck-off-tuberculosis medicine, which means I have to stop drinking until the TB is gone and do constant blood work to check my levels. Not a fan. Of the not drinking, I mean. The blood work is old hat. BUT!!! I just got back from my GP and 80% of the problems I’d had 6 months ago (extreme vitamin and hormone deficiencies, thyroid problems, clotting problems, cholesterol, pre-diabetic, etc.) are now gone. WHOOP! I still have to stay on the (literally) two shoeboxes full of pills and supplements and keep up this terrible low-carb, low-sugar diet for the moment, but I feel mostly human compared to where I was six months ago so I’m (grudgingly) fine with that. Also, I’ve lost 30 pounds, so I went from “obese” to “overweight” and that’s very nice, except I’m now slightly less successful at bending my spine back and resting my hand on my belly while asking anxiously if I can use the restrooms in stores where customers aren’t allowed to use the restrooms. Bit of a mixed bag there. But I’ll take it.
PPPS. Also, I have to do blood work constantly so “See doctor for blood work” is all over my calendar, but google autocorrected it to “See doctor for blood worms” once so now when I type in “See doctor” it automatically fills in “FOR BLOOD WORMS” and I should probably fix that but I’ve decided to keep it because it’s a nice reminder that even though I seem to collect disorders I can at least be grateful that I don’t have blood worms.
PPPPS. Yet.
PPPPPS. That I know of.
PPPPPPS. Fuck. I think I just gave myself blood worms and I don’t even know if that’s a real thing.
PPPPPPPPS. If “leopards” is spelled almost the same as “leotards”, why don’t we pronounce them the same?
Y’all. I was at the post office picking up my mail and the very young clerk helping me suddenly became transfixed and started moaning loudly while looking at my chest. Like slack-jawed and audibly groaning loud enough that other people started looking and I thought, “Wow. My boobs have never had this effect on a man before so I guess I should be flattered but I’m also offended because YOU ARE CREEPING ME OUT, SIR, AND I DON’T KNOW HOW TO RESPOND TO THIS.
So I bent at the knees a little so that my boobs would be under the counter separating us but it didn’t help and the guy’s hands were trembling and he asked, “Did you donate blood?” and that’s when I realized that he was actually looking at the bandage around my arm from having blood work this morning and that I’d bled through the cotton ball and onto the gauze wrap, but before I could answer he turned pale and yelled, “I NEED TO GO SIT DOWN” and sprinted to the back room. And then I felt very relieved but also a tiny bit disappointed that my boobs didn’t suddenly have the power to render a man speechless. But then I reminded myself that I basically made someone almost pass out using only my inner elbow and that’s pretty impressive in itself.
PS. My boobs aren’t on my elbows. I just had my arm up on the counter to sign for the packages. It’s weird that I feel I have to clarify that.
PPS. I just got a call from my doctor about the blood work from last week and turns out my liver is still fucked up from the TB meds so I have to go on an additional medication (22 pills a day currently – a new, terrible record) to try to protect my liver and I also have to move from “under 3 alcoholic drinks a week” to “under zero alcoholic drinks a week” and I was like, “But can I still do heroin?” and she said, “Of course. I’m not going to make you give up carbs, sugar, alcohol AND heroin. I’m not a monster.” And that’s how I know that I have a good doctor. Because she gets my sense of humor. Not that she approves heroin.
Anyway, the news could be worse but it still makes me a tiny bit weepy because I’m a bit overloaded from the last eight months of constant you’re-not-dead-yet-but-we-don’t-know-why-not diagnoses but then I opened the mail and it was filled with old buttons and lovely notes and books and I was reminded that it’s going to be okay and that at least I didn’t have a disorder that makes me pass out when I see other people’s elbows.
That I know of.
Yet.
PPPS. For those of you who missed the button discussion on twitter, I collect them. Then I pretend that my hands are Scrooge McDuck and the buttons are gold coins. It is incredibly relaxing. I’ll make a new video soon.
PPPPS. For those of you asking, yes, I will happily take your unsorted handfuls of unwanted buttons if you don’t want them. Here’s my address: TheBloggess.com / 14546 Brook Hollow Blvd. #400 / San Antonio TX, 78232.
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.
I looked for a gif for “brazil nuts” and this is what they gave me. Seems fitting.
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.
So I have pneumonia again because of course I do and nothing is cutting this cough so today my doctor gave me some cough syrup and my first question was, “Why does it say ‘This is a RED LIQUID’ on the bottle?
Hunter S. Tomcat was intrigued as well.
And so I asked twitter and they were like, “I dunno. Why does it say ‘Do not use on eyelashes’ on my flat iron?” which just gave me more questions. But then a lot of people explained that it was to make sure you got the correct medicine from your pharmacist but the liquid is actually pink (like Strawberry Hill or blush box wine) so then I was paranoid that I’d been given poison, but my pharmacy never even has my antidepressants in stock so I doubt they’d have a bunch of poison handy.
But then it got even more complicated because it said “TAKE 10MLS BY MOUTH” but I don’t have a syringe to measure how much that is so I yelled, “HOW MUCH IS 10 MILLILITERS? at Victor and he was like, “Ten milliters of what?” and I was like, “I mean, 10 milliliters of anything? Codeine juice, I guess?” because I just wanted to know how many teaspoons is in a milliliter, and also why is this even in milliliters? Am I in Canada? Because I paid too much for this medicine if so, and it’s not fair that I have to pay for healthcare and do math too. And Victor was like, “WTF IS ‘CODEINE JUICE’ AND WHY ARE YOU PRICING IT?” and then I gave up explaining and went to the internet and Google was like, “I CAN HELP. A MILLILITER IS .002 PINTS” which was not helpful at all.
But then when I did finally work out the conversion it didn’t matter because I couldn’t find the measuring spoons so I went online to find out if the spoons you use to stir tea are the same size as teaspoons (answer: not necessarily) but there was an image that you could use if you didn’t have measuring spoons that showed you how much a teaspoon of salt looked like in your cupped palm so I poured that much into my hand and then I considered spooning the syrup out of my hand to take it but then I’d have to wash the spoon so instead I just drank it out of my hand and then Victor walked by and was like, “Seriously? THIS IS WHY YOU GET EVERY COLD. YOU ARE LICKING YOUR OWN HAND.” And that’s true, but technically I was licking medicine off my hand so I’m pretty sure that makes this whole thing moot.
PS. Victor vehemently disagrees and is currently buying me measuring spoons because he says my method is ridiculous and probably unsafe but I was actually supposed to have two handfuls of codeine juice (based on my math) and I only took one, so technically I was being conservative and responsible. Victor disagrees on all counts.
PPS. Spellcheck is insisting that “milliliter” is not even a real word and for once I feel like spellcheck has my back. It also is telling me that it doesn’t know what “spooning” is either and now I just feel a bit sorry for it and I suspect it’s hitting on me.
This morning I went to swallow a camera inside of a pill so that the doctor can find out where all my missing blood is going (my current assumption: I’m just really irresponsible) and it didn’t start well because I got there at 7am and waited for an hour because “there was a malfunction”, which is not really what you want to hear about a robot that you’re going to swallow. Eventually they fixed it and I swallowed it, starting the worst p0rno ever while simultaneously becoming part cyborg.
The most terrible tour bus ever.
I was under the impression that I’d have to wear some sort of necklace that transmits the video but turns out I had to wear a giant samurai belt/fanny pack, some blue wires, and something that looks exactly like the purse made to carry the cassette walkman I had in 1984.
Also, the nurse was all, “Be careful that you don’t bang the equipment” and I was like, “I’m not even attracted to it” and she just stared at me because apparently she doesn’t understand questionable phrasing.
Then she said that I had to keep eating an all-liquid diet until this afternoon when I could have a dry sandwich but I reminded her that I couldn’t eat carbs and she was like, “You can have a small piece of meat.”
…but we didn’t have anything in the house so then I had to go to the grocery store looking as if I’d strapped a small bomb to my body. And I made Victor come with me because I didn’t want to do it alone and Victor was like, “So I’ve gotta go to grocery store with RoboCop?” and it was slightly mortifying but whenever people would stare I’d just loudly say, “I’m not sure about this sting. Do you think they’ll be able to tell I’m wearing a wire?” and then they’d stare more, but at least I was in charge of why they were staring.
I get the results in this week but based on my experience I can only assume the result will be “Nope. Let’s find something even more ridiculous to put you through.”
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