How many times can I say something’s wrong and that I’m in pain before I’m heard? Teachers, therapists, friends, they all agree and suggest I go to a neurologist or rheumatologist but my mother insists I’m just inactive and need to exercise more– even as I’m so fatigued and in so much pain that the two miles home from school leave my legs in so much pain I can barely bend them without wanting to cry. I’m just given vitamin d pills and iron pills because she swears I’m just deficient, even as my migraines last 4 days and are so bad I can’t open or close my eyes– the light hurts and my eyelids put too much pressure on the eyes.
But sure. It’s normal. I’m dramatic, even when I’m so fatigued I need a brace to keep my hands up because they’re just too heavy and I haven’t been able to do schoolwork or hobbies at all.
I wish she’d listen to me so I can find out what the hell is wrong with my body. I just want an answer and help, why can’t she stop blaming me for it and start helping me.
The media always depicts women as wanting to look younger. I honestly don’t really care about wrinkles and whatever. My fat is what I’m self-conscious about, but scars, wrinkles or acne? I don’t care. Every wrinkle I get is a blessing because I’ve fought hard to live a fulfilling life.
But, that being said…I got Botox.
Now, don’t get upset. It was for my migraines! Purely a medical decision,…
The Rabbit Writer~ I drew this whimsical rabbit writer several years ago when I was doing a lot of pen & ink work before I came down with the virus that caused my auto immune illness.
I drew this whimsical rabbit writer several years ago when I was doing a lot of pen & ink work before I came down with the virus that caused my auto immune illness.In those days I drew and painted or wrote incessantly; from the time I woke up until I went to bed at night.Like the rabbit character in the illustration I was always thinking of something to draw, write, or create.I was certain that…
Movie Review: The Vampire (1957) directed by Paul Landre
Dr. Paul Beecher (John Beal) is a typical small-town doctor of the 1950s. He has an office in his house staffed by new pretty nurse Carol Butler (Coleen Gray), and also makes house calls. A widower, he lives with his young (11-12) daughter Betsy (Lydia Reed), who cooks for him when not taking ballet and piano lessons (the teachers can’t…
When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.
No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.
FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.
DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.
Setting monthly intentions has quickly become one of my favorite mindfulness practices. It’s a way to set goals for myself and a way to remind myself of the mindset I want to live in. I’ve started placing my intentions on my dresser so that I have to look at them every single day. This way, I’m not just writing the intentions to write them – I’m writing them so that I can…
This weekend I was in Southwest Virginia in a town called Blacksburg, Virginia where I spent four wonderful years going to college at Virginia Tech before graduating in 2015. I have family who currently lives in Blacksburg, family who grew up in Blacksburg and family who also previously attended and some who currently attend Virginia Tech.
Recently I joined a bible study at my church as a way of growing deeper in my faith, find another community of women I could confide in and also as a new way of finding support with the many ups and downs of life.
Last week at the Bible study, one of the women at my table said something during our discussion that really stuck with me. She said “You might be a light for somebody out there without…
This month I want to focus on creating healthy routines & habits that benefit me both physically & mentally.
Here are my intentions for October:
1. Try an anti-inflammatory diet
I want to try a diet that is heavier in anti-inflammatory foods to see if it helps my headaches at all. I’ve also been experiencing inflammation in other parts of my body so I want to see if it will help alleviate…
This weekend I made a quick weekend trip away with my little brother to Duke University! He wanted to visit the campus & my Virginia Tech Hokies we’re playing them in a football game that weekend, so it was a win-win.
We enjoyed walking around the campus (I’ll admit, it was beautiful.) The weather was great, sunny & breezy & not too too hot.
I’ve decided to really focus on living my life, day by day, with more intent. And when writing down what I wanted my intentions for this new month to be, I realized there was sort of a theme: A little less talk, a lot more action.
I always tell myself I will put more time and energy (what little of both I have left in my week) toward my writing, my blog and my efforts to create a community for…
Sometimes it feels like we are constantly falling. You know that feeling you get in your stomach on a roller coaster drop? Or the feeling when you trip and fall on your face in front of a bunch of people? Or when you somehow fall UP the stairs?
When your health continues to knock you down over and over again, that feeling becomes overwhelmingly…
Just last week, the FDA approved the first drug designed to prevent migraines! It’s been all people are talking about in the headache/migraine community, because it’s a pretty big deal!
Living with migraines is tougher than most people can imagine. What can be even tougher, is finding the right doctor, the right treatment and finding both without going broke.
Growing up we are told to “be patient.” Starting from when we were just little ones, we would hear “be patient” from our parents as we relentlessly tugged on their clothes to get their attention. As adolescents, we would beg for the newest thing to keep up with the trends and fit in with our friends. “Be patient,” our parents nagged. As adults, we want our dream job right out of college, we want…
I am excited to share (even though I may have already initially shared) that I have been nominated for the WEGO Health Award in the 6th Annual WEGO Health Awards! Last year I was nominated for three categories and a finalist in two. This year, I’ve been nominated for two categories: Best in Show: Instagram and Best in Show: Twitter. WEGO Health is a mission-driven company connecting healthcare…
I have the worst migraine today I got sick in a customers bathroom and kept right on working. Smoked a little at lunch and it helped the nausea, but didn’t touch the pain. I’d really love to just go home and lay down. Only 2 more hours
I got out of a very abusive, controlling relationship a few years ago with very little money to my name and moved back in with my parents. I’ve been saving to get an apartment, which is about $1100-1300/month here, ever since. I got a job that allowed me to save up, but I was also relentlessly harassed, bullied, overworked, and sexually assaulted to the point where I had a series of mental breakdowns that ultimately led me to quit.
I lost my new boyfriend a few years later due to my father’s interference. My father doesn’t want me here. Before I moved home he actually hadn’t spoken to me in three years, because my previous boyfriend was black. He says I deserve all the abuse “that n*gger” put me through, which included complete alienation of all my friends, complete control and exploitation of my finances, brief homelessness, and the death of my child. He tried to throw me out a month into dating my new boyfriend because “he can put you up now.” Between my job and my father, I was always stressed and miserable, and my boyfriend couldn’t take it. Then he got cancer, and told me he couldn’t deal with my problems on top of his own, he couldn’t take my father anymore, and we couldn’t do this anymore. We broke up. All his friends, even the ones who were supposedly my friend too, sided with him.
I lost a tooth at the beginning of the pandemic, right in the front of my face. It was a crown that had broken. I can’t afford to fix it - I need an extraction of the remaining tooth and an implant, which is $6k total. I only have Medicaid, which the oral surgeon doesn’t take and which doesn’t cover implants anyway. My self esteem tanked.
I don’t have any friends. I’m autistic and have never been great at making them in the first place, and wasn’t able to repair the friendships I lost because of my ex. I don’t talk to my extended family, who my father has been telling for years that I’m an ungrateful, horrible bitch he wishes he never had. They agree with him. Talking to my mother is like talking to a brick wall. She’s so burnt out putting up with my father’s abuse that she can’t even pretend to be a support for me. She never has been anyway.
Most of the time I feel like a glitch in a computer program. I’m not supposed to be here, so people ignore me until I cause problems (whether I actually did or not). No one cared when I was being abused by my ex, even when I came to work crying every day and couldn’t afford to eat. No one said anything in my defense when I was being harassed at work, and after I was assaulted HR told me it was all in my head when I’d report things like “Joe and Brian are telling people they fucked me in the stock room.” Sometimes I’ll vent on social media - both where I know people and where I’m anonymous - and get no response, except maybe “stop saying xyz about people, be grateful for what you have.” I had to delete Facebook because it added to my depression.
I can’t hold a job anymore. I’m terrified of people and being outside. I recently got a freelance gig doing transcription but the pay is very low and only per minute of audio, and I suffer from migraines which makes it difficult. I’ve posted on social media that I can also do editing and proofreading, with no takers. My health has always been very poor and my mental health is trash. No therapist near me takes Medicaid and I’m afraid to go out and talk to one anyway. I’ve been denied state assistance, though I was recently approved for food stamps. I can’t get cash assistance. I’m burning through all of my savings with student loans (which apparently can’t be put on hold because they’re all private) and the rent my dad demands.
On top of all this, my mother just told me she’s divorcing my dad, because he’s abusive and cheats constantly. She’s disabled and won’t be able to keep the house so she’s moving out. She’s the only reason I’ve been able to stay here. I’m pretty sure my father will kick me out, or tell me I can only stay if I become the maid and yard caretaker. He’s already trying to sell my car (which he had to put in his name because my ex destroyed my credit), which will leave me trapped in the house, and my mother has made it clear I can’t move in with her.
My cousins all have their lives figured out. They’re all married with kids, as I’m constantly being reminded of, with their own houses or apartments and good jobs. They’re not afraid of people, or struggling with money, or having a panic attack at 1am on a Wednesday because they don’t know how they’re going to get through the next week, let alone the next year. It feels like the cat is the only one on my side and the only one who actually wants anything to do with me. Ten years ago my father called me a failure as a daughter, an adult, and a human being, and it’s just… true.
I got out of a very abusive, controlling relationship a few years ago with very little money to my name and moved back in with my parents. I’ve been saving to get an apartment, which is about $1100-1300/month here, ever since. I got a job that allowed me to save up, but I was also relentlessly harassed, bullied, overworked, and sexually assaulted to the point where I had a series of mental breakdowns that ultimately led me to quit.
I lost my new boyfriend a few years later due to my father’s interference. My father doesn’t want me here. Before I moved home he actually hadn’t spoken to me in three years, because my previous boyfriend was black. He says I deserve all the abuse “that n*gger” put me through, which included complete alienation of all my friends, complete control and exploitation of my finances, brief homelessness, and the death of my child. He tried to throw me out a month into dating my new boyfriend because “he can put you up now.” Between my job and my father, I was always stressed and miserable, and my boyfriend couldn’t take it. Then he got cancer, and told me he couldn’t deal with my problems on top of his own, he couldn’t take my father anymore, and we couldn’t do this anymore. We broke up. All his friends, even the ones who were supposedly my friend too, sided with him.
I lost a tooth at the beginning of the pandemic, right in the front of my face. It was a crown that had broken. I can’t afford to fix it - I need an extraction of the remaining tooth and an implant, which is $6k total. I only have Medicaid, which the oral surgeon doesn’t take and which doesn’t cover implants anyway. My self esteem tanked.
I don’t have any friends. I’m autistic and have never been great at making them in the first place, and wasn’t able to repair the friendships I lost because of my ex. I don’t talk to my extended family, who my father has been telling for years that I’m an ungrateful, horrible bitch he wishes he never had. They agree with him. Talking to my mother is like talking to a brick wall. She’s so burnt out putting up with my father’s abuse that she can’t even pretend to be a support for me. She never has been anyway.
Most of the time I feel like a glitch in a computer program. I’m not supposed to be here, so people ignore me until I cause problems (whether I actually did or not). No one cared when I was being abused by my ex, even when I came to work crying every day and couldn’t afford to eat. No one said anything in my defense when I was being harassed at work, and after I was assaulted HR told me it was all in my head when I’d report things like “Joe and Brian are telling people they fucked me in the stock room.” Sometimes I’ll vent on social media - both where I know people and where I’m anonymous - and get no response, except maybe “stop saying xyz about people, be grateful for what you have.” I had to delete Facebook because it added to my depression.
I can’t hold a job anymore. I’m terrified of people and being outside. I recently got a freelance gig doing transcription but the pay is very low and only per minute of audio, and I suffer from migraines which makes it difficult. I’ve posted on social media that I can also do editing and proofreading, with no takers. My health has always been very poor and my mental health is trash. No therapist near me takes Medicaid and I’m afraid to go out and talk to one anyway. I’ve been denied state assistance, though I was recently approved for food stamps. I can’t get cash assistance. I’m burning through all of my savings with student loans (which apparently can’t be put on hold because they’re all private) and the rent my dad demands.
On top of all this, my mother just told me she’s divorcing my dad, because he’s abusive and cheats constantly. She’s disabled and won’t be able to keep the house so she’s moving out. She’s the only reason I’ve been able to stay here. I’m pretty sure my father will kick me out, or tell me I can only stay if I become the maid and yard caretaker. He’s already trying to sell my car (which he had to put in his name because my ex destroyed my credit), which will leave me trapped in the house, and my mother has made it clear I can’t move in with her.
My cousins all have their lives figured out. They’re all married with kids, as I’m constantly being reminded of, with their own houses or apartments and good jobs. They’re not afraid of people, or struggling with money, or having a panic attack at 1am on a Wednesday because they don’t know how they’re going to get through the next week, let alone the next year. It feels like the cat is the only one on my side and the only one who actually wants anything to do with me. Ten years ago my father called me a failure as a daughter, an adult, and a human being, and it’s just… true.
