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@likethelotus
I mentioned this in my last post, but I wanted to make a separate post about it.
I went to a new doctor because my symptoms have been worse and more unbearable than ever. She took blood to see if there’s anything else going on, but she said fibromyalgia is at the top of her list for what she thinks is going on with me.
She still recommended I see a rheumatologist, but in the meantime, she has me on Cymbalta to see if it helps with my symptoms. I hadn’t wanted to take it last year when the (very terrible) rheumatologist I saw tried to push it on me without even being willing to try to give me a diagnosis, but my symptoms have been so bad lately I’m willing to try it now.
Anyway, I’m kind of lost on this. Fibromyalgia is such a nebulous concept to me. When I try to look up anything about it, all I see is “fatigue and pain.” But I actually came across an article tonight where people described their fibromyalgia symptoms, and so many of them sounded so specific to how I also feel. Some of them, I literally said “Oh wow, yes” because someone put into words the feelings I have so often. But I have no idea if that’s what this actually is, and I feel so weird.
This is the first doctor I’ve seen who I truly felt listened to me. And she also said she has several other patients who have fibromyalgia and my symptoms sounded very similar to what they describe. But I also finally feel like I do have a diagnosis, because if four doctors think this is what I have, and what I feel matches up with what other people with this have, then it must be real.
And either way, I’m finally accepting that I have an issue that won’t go away, no matter what it is. The fact that it’s been so much worse lately has really helped me see that. Whatever I have, it’s a chronic condition, and it’s not getting better. I have to learn how to live with it either way. And it’s both liberating and scary to realize I have to learn to live with this chronic condition and have as normal a life as I can with it, but I also don’t want it to get in my way. And I’m determined not to let it get in my way.
Anyway, if anyone has fibromyalgia and feels generous enough to offer some advice on this, I’d love to be able to learn more about it from something other than websites that will only say it’s pain and fatigue. But please don’t feel obligated to talk to me about it. I just figured I’d put it out there in case anyone is up for chatting about it a bit.
It felt good to get this out, and I think I’m on the right track now. Even if I don’t have fibromyalgia, I’m going to learn how to live with the extreme fatigue and the constant pain and figure out what I can do to be myself despite it.
I don’t write much here anymore, but here’s where I’m at, because I need to get it out of my system and I don’t feel like trying to write it in my journal...
First of all,it’s suspected that I have fibromyalgia yet again. I’ll probably make a separate post about that because I don’t know what’s going on but that’s the fourth doctor I’ve seen who thinks I probably have fibromyalgia and I need to learn how to deal with what I’m going through.
Second, I reconnected with my former best friend on Facebook about a month and a half ago, and she’s married now and pregnant and two weeks away from giving birth at this point, and it’s just so weird to me. I mean, I’m not the biggest fan of pregnancy type stuff, because I don’t ever want to be pregnant and it freaks me out. But also, it’s weird because we were best friends through some of the toughest stuff at the time and she was the first real best friend I had and I really thought we’d go through so many milestones together, and we haven’t. And now she’s having a baby and I’m not involved in her life whatsoever apart from chatting on Facebook, and I just feel so weird. It’s like I miss her and I don’t, and I don’t know if it’s really that I’m missing her or that I feel weird because we expected to go through these milestones together. I have a new best friend now who I have a much healthier relationship with, but she lives far away, so I don’t get to see her very often. Plus, we didn’t go through the things I went through with this former friend, though we have gone through other things. They’re friendships from different eras of my life. I just feel... weird.
Anyway, between those things (and I have super simplified the first part especially), I just feel a lot lately.
hot take: moms need to learn how to listen to and comfort their daughters without making everything about their own traumas
a classic example
daughter: hey this thing you do bothers me very much and i wish you wouldn’t do it
mom: well my parents abused me and im not even as bad as they were and i had to sit through it so you gotta sit through whatever i do to you too
a common variant
mom: well i’m having a really hard time right now and you know that i’m doing my best and that i didn’t mean to hurt you ergo you are in fact the asshole for asking me to consider your feelings and change my behavior during this hard hard time i’m having
least favorite
mom: fine. you’re right and i’m wrong and i’m a horrible person. there. are you happy now?
see also
mom: you can’t be mad at me. you’re not allowed to be mad at me. i can’t stand it.
Yeah this is just straight-up emotional abuse. It’s not uncommon for moms to confuse “emotional closeness” with demanding their children caretake for them emotionally, or just having no boundaries. And “have you considered that you are in fact the abusive one” is bog-standard DARVO (Deny, Attack, Reverse Victim and Offender).
Women also make the mistake that because we are frequent targets for abuse, we cannot be abusive ourselves. WOMEN CERTAINLY CAN BE ABUSIVE, especially towards children society has historically said we ought to have the power of life and death over, and who tradition says should be 100% subservient to us.
do u ever realize that like. if you’re planning to adopt older kids and you’re intending to do it within the next couple of years your future kids are already born? like they’re out there already and one day you’re gonna get to meet and love them
PSA to all now that is is Pumpkin Spice Season
From someone who worked at starbucks. If you have a milk/dairy allergy AT ALL. DO NOT. I repeat. DO NOT. Drink Pumpkin Spice.
It contains dairy IN the syrup that is used to make the drink. Even if you get it made with soy, you will still be getting doses of dairy in there.
Depending on the severity and intolerance it can and will cause reactions. I found that as a barista I was constantly warning people about the dairy in the product. No one ever seemed to tell them that there was dairy in the mix. More times than I can count I heard people realize that’s why they kept having reactions, or that’s why it made them sick.
People legitimately do not know that pumpkin spice no matter what you do will always contain some amount of dairy.
One thing I will say is that if you’re recovering from an eating disorder, be cautious of the recovery community here on tumblr. While I found useful information there that made me realize I needed to get help for my EDNOS, it also ended up being really harmful when I was actually trying to recover.
I’m struggling to find the right way to describe it, but I think one of the biggest things is that while there are a lot of people who say they’re in recovery and clearly aren’t (which is a whole thing on its own), there are also plenty of people who say they’re in recovery, and they actually are, but so much of what they do is talk about their ED. And I get it, it can be really consuming, but eating disorders are so competitive and it hurt more than it helped for me to see people who were all going through the same stuff in their recovery and I wasn’t. It made me regress a little bit in some ways, because I felt like my recovery wasn’t real and therefore my ED wasn’t real all because I wasn’t going through what these other people were.
An example of this was seeing other people talk about their “fear foods.” So many of the recovery bloggers I followed took their fear foods veeeerrrry seriously. They would talk about how hard it was to go out to eat and see a menu full of fear foods. They’d talk about breaking down crying trying to eat a fear food unsuccessfully. They’d talk about the victory of finally eating a few bites of a fear food. They would talk about how a year ago, their fear food was an impossible feat, but they just ate the whole thing and only thought about it a few times.
I didn’t have any fear foods. I wasn’t out there crying over a fear food I couldn’t eat, or posting about how it was scary seeing a menu full of fear foods. All my foods were fear foods, really, because I had a restrictive eating disorder. But when I would see people talk about their fear foods, I started to question myself. I already didn’t have an easily-definable disorder (and I’m not going to get into specifics, because I don’t want to accidentally influence anyone else to think the way I did), and even the doctors I had begged for help didn’t believe I had an eating disorder. But when, on top of that, my symptoms and behaviors didn’t match up with other people’s, I felt like I was even more unbelievable. Like maybe I didn’t really have a true eating disorder. And if I didn’t really have a real eating disorder, why bother trying to stop whatever it was that I was dealing with? Why bother to recover if there wasn’t anything real enough to recover from?
That mentality kept me from really working on my recovery for a long time. And recovery is a long process anyway, but that certainly didn’t help me move along any faster. And I want to say that maybe it’s my own fault that I was influenced by it, but really, many mental illnesses- including eating disorders- can make a person more vulnerable, and that was why it all got to me. As strong as I tried to be, it was tough when the place I turned to for refuge and support made me feel worse. I ended up trying to figure out what my fear foods were, and I sometimes even mentioned them in posts, because I hoped that by mentioning something that seemed “legitimate,” maybe my struggles could feel more legitimate, too. But all it really did was keep up that sense of competition that I had with my ED, and it got in the way of getting to a healthier place sooner.
I want to clarify that I’m not saying having fear foods is bad, or that posting about fear foods is bad- everyone’s journey is different, and if that’s yours, that’s fine. I’m just putting this out there to let people know to really be mindful of outside influences and how healthy the media around you is when you’re recovering from an eating disorder. If you have fear foods and it helps you to see other people talk about theirs, too, then great! It’s awesome to find something that helps you heal.
But if you realize a blog or multiple blogs you follow are hurting more than helping, take that big step and unfollow until you’re in a healthier place. I know we can’t control all the messages we see around us, but we can choose what blogs we follow, and I’d encourage anyone recovering to seek out the blogs that help, not hinder. Just keep moving forward in recovery. That’s what matters.
I haven’t really been as active on tumblr as I used to be, and I kind of keep forgetting about it. I’m in a really different place now than I was when I made this tumblr and started using it, so I think it’s just not as necessary for me to go back to it. I kind of want to write about some of my experiences in recovery, bc I think they could be helpful to people, but tbh I’ve been through so much and worked on so many different things that I don’t know where to start. Hopefully, I’ll get around to that soon. Maybe I’ll just start now and see where it goes.
Anyway, I feel like this sounds serious but it’s not. Just thought I’d make an update since I’m not on here much anymore!
Hello! How are you?
moving from one crisis to another as elegantly as I can
(photo by fistfullofcookies)
Why do parents always assume their kid is lazy when they get bad grades? Like maybe help your kids by talking to them, not punishing them. This is how I failed math and didn’t even know I had number dyslexia for years.
When my sister was in high school she struggled a LOT with math. Like I know a lot of people find it really difficult (myself included), but I mean she was really really bad at it. She has always been a very smart, creative and sensitive person, but math made no sense to her, to the point where passing seemed impossible.
I will always remember that twice a week, around the kitchen table, my sister would sit down with my dad for hours, and they would try to work out her math homework. I should mention that my dad is an artist, and art teacher. Truth be told I think he struggled with math just as much if not more then she did. But twice a week you could hear them downstairs, going back and forth, trying to figure it out together. Some nights would be smooth and easy, some nights I could hear them arguing from one floor up about factors or equations, not in anger but in mutual frustration.
I remember the day that she passed. My sister couldn’t wait until my dad’s school day ended, so she called him at work. She gleefully announced to him “I got a D-!”. We could hear him through the phone as he exclaimed “She got a D!” excitedly to his class. Still through the phone we heard his students clapping, laughing and whooping in congratulations. Seldom has a grade in our household been so celebrated.
Just thought a shitty picture like this should be accompanied by a story about a person’s parents who actually gave a shit about helping their kid instead of mocking and punishing them.
Read the story
I hate the vicious cycle of needing to eat better so I can feel better, but needing to cook in order to eat healthier meals, but not having the energy to cook a meal and then clean up afterwards, so I just keep eating quick and easy things like frozen food and fast food, and then I still don’t feel well, and I just get stuck there.
I finally got to see a rheumatologist, and my second appointment is tomorrow. It’s a followup after the x-rays and blood test I got done. I feel such a weird mix of emotions… I guess I thought I’d get more answers at this appointment, since we had a good idea of what we were looking for as the cause of my issues, but when the nurse called to talk to me about my blood test results, one of the things that came back was an extreme vitamin D deficiency. And she said that alone isn’t causing my problems, it’s just exacerbating them, but I guess now I’m afraid I’ll go tomorrow and they’ll be like “Well, finish your vitamin D supplements and then we’ll talk.” And that would just suck.
I don’t think I expected to know everything after this next appointment, but I thought I’d have a better idea of what’s going on, and now I’m afraid it’ll be more waiting while I’m still feeling so crappy. That might just be how it goes, but it’s still disappointing to feel like I was finally getting somewhere and now I could just be told to wait more. I haven’t had a good pain day in a few months now, and it’s distracting me at work. I used to have a little more time in my day before it got distracting, but now it’s distracting within a couple hours of starting. And the fatigue is so bad. I know the vitamin D supplements will help, but since it’s been going on since before I had this deficiency, I guess I don’t know how much it will really do. And it’s also mentally exhausting to go through each day in pain and completely exhausted and with brain fog, even on days when I’ve slept for most of the day or haven’t done anything. I have to plan so many things around the way I feel every day, or the way I’d feel if I did anything. I just want to know what’s going on with me.
I know it won’t fix it, but just knowing will help so much. Even finding out that I have a severe vitamin D deficiency has helped, because I feel like I’m allowed to feel so fatigued and weak now. I know that’s silly, and I know I don’t need validation for something to be real and affect me, but society has made me feel like I do. It’s silly, but it’s ingrained in me. And I know I’m not the only person who grew up in a family where, if you didn’t have medical proof of being sick (or sometimes even if you did), you weren’t allowed to act sick. And of course, people who don’t go through it don’t understand, so I sort of get it. But I know I’m also hard on myself, and because of the lack of validation and the feeling like I’m not allowed to act sick, I end up pushing myself and feeling worse and yet still not feeling like I count as “bad enough” to complain no matter how bad I feel. Like, I almost said before that I know I’m not the only spoonie, instead of only person, but I feel like that’s not my language to use. Even though it fits my situation and I internally measure my energy levels/output in spoons, I feel like I’m not “bad enough” to use it. I sometimes describe my issues as my “chronic illness,” and I don’t feel like I’m bad enough to use that either. I never really know what to say about whatever is making me feel so bad, because none of it ever feels like it’s language I’m “allowed” to use. Despite the pain and fatigue and weakness that all affect my life all day, every day, I feel like I’m not “bad enough” to be allowed feel bad or say I feel bad.
I think that’s why this rheumatologist appointment was so important to me. I thought I’d finally get validation that I do feel this bad, and that I’m allowed to feel this bad. I know I don’t need validation for it to be real, but after a lifetime of being told I do, it would just feel good to know that I’m allowed to be chronically ill, that I’m allowed to take care of myself in the way I need, and that I’m allowed to acknowledge that I’m not doing well right now.
The doctor basically said I have fibromyalgia, but because I wouldn’t beg her for pills to help with my pain, she wouldn’t give me a diagnosis and said it’s about “preventing” fibromyalgia bc right now my pain isn’t all day, every day, everywhere. Only the thing is, my pain is all day, every day, everywhere. I not only told her that up front, but I also corrected her multiple times when she kept trying to say that my pain wasn’t that frequent or severe. And the last time I corrected her at this appointment, after she had told me once again we were “preventing” fibromyalgia and I said “But my pain is all day, every day, everywhere, so I’m not sure what we’re preventing, it’s already happening,” she said, “Well, you don’t want to take pills, so I don’t know what you expect me to do!”
So basically, because I wasn’t begging for pills to help with my pain, she didn’t believe I was actually in all the pain I described to her, so I can’t possibly have fibromyalgia (despite having all the symptoms, her calling it my working diagnosis, and two other doctors suggesting I see a specialist because I had all the symptoms). Like... what a fucking disappointment. And what a shitty doctor.
Oh, and fuck her, I have fibromyalgia and I won’t be denying myself the care I need just because I don’t want to take pills.
I finally got to see a rheumatologist, and my second appointment is tomorrow. It’s a followup after the x-rays and blood test I got done. I feel such a weird mix of emotions... I guess I thought I’d get more answers at this appointment, since we had a good idea of what we were looking for as the cause of my issues, but when the nurse called to talk to me about my blood test results, one of the things that came back was an extreme vitamin D deficiency. And she said that alone isn’t causing my problems, it’s just exacerbating them, but I guess now I’m afraid I’ll go tomorrow and they’ll be like “Well, finish your vitamin D supplements and then we’ll talk.” And that would just suck.
I don’t think I expected to know everything after this next appointment, but I thought I’d have a better idea of what’s going on, and now I’m afraid it’ll be more waiting while I’m still feeling so crappy. That might just be how it goes, but it’s still disappointing to feel like I was finally getting somewhere and now I could just be told to wait more. I haven’t had a good pain day in a few months now, and it’s distracting me at work. I used to have a little more time in my day before it got distracting, but now it’s distracting within a couple hours of starting. And the fatigue is so bad. I know the vitamin D supplements will help, but since it’s been going on since before I had this deficiency, I guess I don’t know how much it will really do. And it’s also mentally exhausting to go through each day in pain and completely exhausted and with brain fog, even on days when I’ve slept for most of the day or haven’t done anything. I have to plan so many things around the way I feel every day, or the way I’d feel if I did anything. I just want to know what’s going on with me.
I know it won’t fix it, but just knowing will help so much. Even finding out that I have a severe vitamin D deficiency has helped, because I feel like I’m allowed to feel so fatigued and weak now. I know that’s silly, and I know I don’t need validation for something to be real and affect me, but society has made me feel like I do. It’s silly, but it’s ingrained in me. And I know I’m not the only person who grew up in a family where, if you didn’t have medical proof of being sick (or sometimes even if you did), you weren’t allowed to act sick. And of course, people who don’t go through it don’t understand, so I sort of get it. But I know I’m also hard on myself, and because of the lack of validation and the feeling like I’m not allowed to act sick, I end up pushing myself and feeling worse and yet still not feeling like I count as “bad enough” to complain no matter how bad I feel. Like, I almost said before that I know I’m not the only spoonie, instead of only person, but I feel like that’s not my language to use. Even though it fits my situation and I internally measure my energy levels/output in spoons, I feel like I’m not “bad enough” to use it. I sometimes describe my issues as my “chronic illness,” and I don’t feel like I’m bad enough to use that either. I never really know what to say about whatever is making me feel so bad, because none of it ever feels like it’s language I’m “allowed” to use. Despite the pain and fatigue and weakness that all affect my life all day, every day, I feel like I’m not “bad enough” to be allowed feel bad or say I feel bad.
I think that’s why this rheumatologist appointment was so important to me. I thought I’d finally get validation that I do feel this bad, and that I’m allowed to feel this bad. I know I don’t need validation for it to be real, but after a lifetime of being told I do, it would just feel good to know that I’m allowed to be chronically ill, that I’m allowed to take care of myself in the way I need, and that I’m allowed to acknowledge that I’m not doing well right now.
I haven’t really been active on this blog in a while. I realized it was no longer a very healthy option for my recovery, so I stepped away from it. But I’m at a point now where I can handle it better, so while I’m not sure how often I’ll be around, I may be a little more active.
I also wanted to put it out there that I am now open to answer questions, give advice, and just listen if anyone needs to vent.
This won’t necessarily become an advice blog or anything, but when I started it, I always knew I wanted to get to a point where I could use it to give back in the same way so many other people’s blogs helped me as I started recovering. I’m finally in a place where I can do that, so if anyone has questions or wants advice or just wants to vent, feel free to send me an ask. I don’t really use messaging and I don’t know that I’d be great at extended conversations, but I’d definitely be happy to answer asks.
Thanks to all my followers who have been around these last few years as I recovered. I hope you’re all well, too!
the biggest red flag for abusers from my experience is: how do they react to being told “no” or “I’m not comfortable with that”
do they turn this around on YOU and make you comfort them?
do they make you feel weird (or start to psychoanalyze you, implying you are mentally fucked up for having this boundary) for asserting yourself?
do they keep asking in different ways after you have said no once?
do they otherwise try to convince you or change your mind?
Tweet by Paula Pell (@perlapell):
You should act as a feminist far more often than you announce that you are one.
On a happier note, the doctor today actually listened to me and validated me and told me that I’m right and I shouldn’t be feeling this way and my doctor should have tried a number of other tests on me to figure out what’s going on and rule out other things. She told me to get a second opinion and also told me some specific symptoms I should make sure I point out to the doctor. She actually asked me if I had a certain symptom and I thought it was something everyone had but apparently it’s not normal and she said that’s a major one I should bring up and it was just so nice of her and helpful. She’s not the right doctor to help me get any further than that, but it felt really good for her to tell me it’s ok for me to not want to feel this way and to want to fix it.