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Well, I finally got a diagnosis. I thought I had multiple sclerosis, with all my symptoms. Turns out I have thyroid cancer with secondary hyperparathyroidism. Not what I was expecting at all. It’s a relief to finally know and I do love that there’s a plan moving forward. I’ll likely be okay, after they remove my thyroid. It’s just weird when your diagnosis is not what you were expecting AT ALL. #Cancer #thyroid #Hyperparathyroidism #MultipleSclerosis

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The Case of the Mysterious Malady

So I have a problem. And before anyone comments, “just go to the doctor!” I am trying but I live in America with crappy insurance so it’s… difficult.

Anyway, all my life I’ve had fatigue, brain fog, and social anxiety. So I’m used to panic attacks and all that. But the past couple of years symptoms seem to have skyrocketed to what feels like an actual illness but nothing I’ve researched seems to perfectly fit. I was wondering if anyone on here has had this myriad of issues to help ease my mind that I’m not dying until I can get to a doctor:

Fatigue is present always, along with anxiety. Like, the jitteriness NEVER lets up. I’ve also developed constant dizziness. It feels like the earth is moving beneath me when I stand and walk and I also always veer to the left, so when I walk I look drunk. There’s also what feels like leg weakness. And when I stand my chest is heavy and I can’t take a deep breath until I’ve sat down for at least an hour.

Then, on what seems to be part of my monthly cycle during my period of ovulation and my actual period my heart RAMPS up. My resting on a good day is 73bpm. During these periods it stays at a constant 100-125bpm. It’s gotten as high as 160. But after this period it always goes back to normal. I also get even more anxious and emotional during these times and my previously listed symptoms get a thousand times worse.

I also get very hot very easily. Like, I have to stand in the freezer at work in the winter to feel normal type of hot. I lost like 50lbs very quickly during the onset of all these symptoms and now I’m always hungry. I also developed light sensitivity to where it hurts sometimes to watch my favorite superhero movies.

There’s also times where it sort of feels like I’m out of my body? I can’t really describe this sensation other than a combo of not being in reality and mildly losing my mind. But then the sensation passes and I’m just left in a weirder brain fog.

Has anyone else had this and did you ever get it diagnosed? The closest thing I’ve been able to find is a thyroid condition. It covers the heat and light sensitivity. But is it possible this is all just anxiety in it’s most annoying form? I just need reassurance.

Thanks for reading! #Anxiety #Hormones #thyroid #medical #Dizziness #BrainFog #weakness #Fatigue

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Music is my therapy

I listen to music almost all the time. And just to warn you, I’m going to be singing along. (I have a good voice though) My kids complain about it (13,17 both boys and both on the Spectrum but at completely different levels. I suspect that I’m autistic #Autism so I understand why certain things bother them. It doesn’t matter if it’s their favorite song playing, they insist that I turn it down (one seems to have super hearing because he’ll be on the computer (which is between all of the bedrooms and all of the doors are to remain shut) WITH headphones on, and I’ll be on my bed listening to my #Music and possibly singing, and then I’ll hear one of my sons yelling “Turn it down!” And I have to turn it down to where I can barely hear it or put my headphones on. And when I yell to one of my kids from the same place I had been playing music, they yell back “If you’re trying to talk to me then come out here!” Or they knock on the door and I yell “Come in!” And they reply, “What? I can’t understand what you’re saying! Can I open the door?” But my music is WAY TOO LOUD. And then I’m going, but you like Slipknot! And they always say that they don’t want to hear it right now.

So I go out to the porch with a speaker and I can blast my music outside. Music was one of the only things that would calm down our feral #Cat (we’ve had him since he was 5 weeks old and his mother was rejecting him) but he was just amazed at the sounds coming out of my cell phone and stop using his teeth and claws when we had him in the bed. (Side note- no matter how young the feral cat is, and how used to humans they are, they are still wild animals and you have to take time to tame them) His favorite band was #tool . He would actually curl up on the phone and listen.
I have several chronic illnesses and emotional issues—#Ehlers -Danlos Syndrome type 3, #Fibromyalgia , #idiopathic peripheral neuropathy,#Dysautonomia and I’m being evaluated for #Lupus and #rheumatoid arthritis (EDS likes to bring friends), and I have a small cyst on my pancreas that could turn cancerous (my grandfather, great grandmother and my great uncle [my grandfather’s brother and g-grandmother’s son] all died of #pancreatic cancer. I have a bunch of #nodules on my liver and my #thyroid , #Migraines AND #cluster headaches, #hashimotos , and I suspect #Celiac disease since my mother and nephew have it and it would explain a whole lot (right now I’m cutting out dairy, then wheat, then soy-which is difficult because I’m a #Vegetarian ) plus my mental illnesses, #PTSD , #Bipolar disorder,#Anxiety and depression—and those last two are actually a CRITERIA for #EDS .
I have to have my music and be able to listen to it—before I had ear pods, I would just play it on my phone with it stuck upside down in my bra. The music that is played in stores that I have to go to will actually give me a #Migraine so I don’t have any problems with bothering other people by playing my favorite playlist. They need to be exposed to good music anyway.
I loved that I had a Bluetooth radio in my car, and I would have it turned up loud, and when I was smoking (I just quit!) I would have the a/c blasting (I live in #austin #texas , so it’s running year round) and I would have my window down for my cigarette. And this way I could expose people to good music (if I had a chance to say just 5 words to the country, it would be “ STOP LISTENING TO SH*TTY MUSIC”(seriously, what’s with all the smut in popular music today?)) and possibly find another person that enjoyed the bands that I play.
My number one song for my bad days is #invincible by #tool and this song has been my anthem. Also, A Perfect Circle’s #feathers , another #tool song, #thepatient (can you tell that I’m a big fan of Maynard James Keenan? I have everything that he’s released on my phone) and when I’m dealing with my #PTSD , there’s nothing like The (Dixie) Chick’s “Not Ready to Make Nice “and L7’s “Sh*tlist” and a whole lotta Hole.
I’m into a lot of different genres, but mainly #Metal and #Punk (not pop punk! I don’t call that punk. It’s alternative.). And if I’m not in a motorized cart, having a good day, and I can see the security camera, then I’ll start dancing along the aisle (but not with other customers in it unless I can tell that they’re a punky/gothy/metal head/freak and then I’m talking bands with them.
#Music has also been a way for me to meet people with similar tastes. I can’t go to listen to live music or go to a concert because of my #Dysautonomia . I don’t think that they would let me bring in a couple gallons of Gatorade. But I also made a battle vest with band patches and tons of band buttons (mainly punk bands and metal) and people will comment about this or that band, and ask what my favorite album is and my favorite song by that band (I know at least one song by each band and I’ll either name the song that is considered the best or an obscure song by a band that is mainly associated with just one song (like the Sex Pistols—I like the song “Pretty Vacant”) because I don’t just listen to one song, because you’re going to miss out on so many great songs that weren’t played on the radio.
This is what I collect. Music. Musicians. And I’ll research them and tell people obscure things about that musician or band-like that during a Nirvana concert, Kurt Cobain saw a girl being sexually assaulted in the audience and he didn’t say a word but put down his guitar, grabbed the guy and hung him from his belt loop on a prop so everyone could see him and then Kurt went back to his chair and as he was picking up his guitar he said into the microphone while looking towards the guy and said “Now you get to be exposed.” Not the only time a musician has come to the rescue of a fan.
If I’m not listening to my music, that’s a signal that I’m extremely depressed. Because it’s such a part of my coping methods when I’m dealing with pain or exhaustion or anxiety or depression or dehydration or nightmares. I’m not savvy enough to post my parts of my favorite playlist, but for anyone who is dealing with a #chronic illness that has changed their entire life (which one doesn’t?) I highly recommend listening to TOOL’s #invincible from the Fear Inoculum album. And if you’re dealing with #PTSD , listen to A Perfect Circle’s #feathers . That song is like Maynard’s supporting you in your recovery.

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Lately I've had a lot of trouble getting anything done. I've had several health flares from lymphedema and fibromyalgia, as well as IBS. My thyroid is a little over-productive right now and it's hard to concentrate on much of anything for any length of time. I have a lot of things going unfinished around here, and I'm finding dishes scattered from room to room.

The good news is, I'm keeping up a little better with my medications, and I've been going to a clinic which seems to really be looking after my best interests. I'm still scared that I'm going to run out of money before the next time I'm paid, but so far it's been okay.

I'm very lonely and very frustrated, and I can't even think of anything I'd like to do. I don't have a vehicle after the wrecking the van (I think I was dissociating), so there isn't much I could manage anyhow. #Lymphedema #Fibromyalgia #thyroid #medications

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What Losing 50% Of My Hair Taught Me #HypothyroidismUnderactiveThyroidDisease

Hair is everywhere. Not just literally (and personally speaking) on my bedroom, kitchen, and bathroom floor, but all around us wherever we look. Our hair is one of the most important pieces of our own identity; whether it is short, long, spiked, or even bald… it tends to be the first thing people notice when they look at you — sometimes, sadly, to an extreme level.

I grew up in a family with long, thick-ass hair and was always the girl with the long hair. Growing up during preschool and kindergarten, boys would literally follow me around and see me as this superior symbol of strength, obsessing over my hair. If I graduated to the big girl potty, they’d want to follow me. If I climbed the monkey bars, they’d want to as well. My hair had always been to my waist or my bottom; it was truly my identity and deep inside, I know it always will be. Even if I temporarily shaved all my hair off, I will always be the girl with the long hair; but at the same ironic (and maybe hypocritical sounding) time… I’ve not attached to it anymore though.

To this day, I’m still not exactly sure I can pinpoint what fully happened but one day…it simply started falling out to my own surprise and mental demise. It would be like Rapunzel going bald (what else is the girl honestly known for?). I went to a bunch of doctors not long after and was diagnosed with a scalp condition called Telogen Effluvium; a (mostly) reversible condition in which hair falls out by the root. The problem though, was that no one could figure out where exactly it was coming from. It can typically be caused by a shock to the system; whether that be childbirth, physical or emotional trauma, surgery, extreme stress, physical illnesses, etc. And the issue was that I had multiple root causes and have still not found the exact reason 3 years later.

I feel in my gut and have had many people including doctors, naturopaths, psychologists, therapists, loved ones, and many others truly believe that it is a mix of physical and (mostly) emotional trauma; it was as if my body truly imploded. My mind went into overdrive and made itself physically sick and lost everything all at once (in other aspects of my life), so at this point, I’m sadly not that surprised. After what felt like months and then years, I couldn’t find the strength to accept it. Hair was who I was. Hair was my love. It was my support blanket. When I was a little girl and got scared, I would hide in my hair; it was my room, my safety, and my security. So many showers had been spent having massive breakdowns pulling it out in handfuls, praying to God, and to this day it’s still not exactly pleasant but I’m more so indifferent…with a dash of acceptance at times (hopefully).

My hair had always had a root connection to my father also; my father loved my long hair and if I no longer had that… would he still even see me as beautiful? Would I still be pretty? It might seem like a silly thought but there’s still a small part inside of me that feels that way. After so much research I came across so many people (especially men) that hated short hair on women and it continued to push the repetitive belief in my head that a woman with short hair or no hair at all is simply not beautiful. Not feminine. Maybe cute if she had the right face or body…but if even that. So much of the time it takes losing something important to you to realize what you had and then to learn to simply live on without it and for me, that was my hair.

I eventually came across a whole platform of women online (and some in real life, too) that went through this exact disheartening experience. It was like this huge, sad secret club that no one could possibly understand the emotional burden of until you are living it. But one of the things that began to rub me the wrong way one day was that it continued to be all they talked about, all they suffered over, and all they identified themselves as. All these sad, lovely women brutally beat themselves down for not looking how they or others wanted them to look. I was, in no way, holier than thou, and yet…I wanted to be more than that feeling. I didn’t want to continue to hurt so severely over this; I wanted to break up with the idea of who I thought I was, who I’d been seen as, and who I should be.

While I feel deeply that it’s not permanent, for now, while this is still happening, I didn’t want to continue to shift this tough experience into harsher resentment and anger towards the cold, hard truth of my reality; that this is really happening. I am losing my hair. And to a certain extent, it is okay and I’ll be fine. It has become yet another true test of my inner strength and patience to sit down with myself, change my perspective about this and realize that my body is ringing its alarm bell and telling me to continue to calm (the f***) down; to continue healing and take it easy. 18 years of extreme, consistent trauma to my mind will understandably put my body in overdrive and will take years to heal. And to expect more of that would be unfair to me. I am alive and breathing and am getting better every day — and at the end of the day, what more could I ask for?

While I still mourn and accept this loss, it has been the smack-in-the-face realization by looking myself in the mirror, that has made me laugh in tears at the small box I have buried myself in for something I cannot control. Something that doesn’t even begin to define an inch of who I am. How unkind could I be to myself to think that I am nothing but an empty, ugly shell for not marking off everything on my checklist of : How to be Beautiful? And as I continue to hold space for myself to feel all that I feel towards this…I now at least realize that I am not less of a woman or a person for any of this. I’m still me.

#MentalHealth #HairLoss #hashimotos #thyroid #Depression #Anxiety #Hope #Happiness #philisophical #telogeneffli

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What in the world would make me want to create a support group for people with apathy? Well, I have at least seven individual legit reasons why I suffer from apathy all at the same time. That means I tend to succumb hard to not doing anything at all. It is very challenging and I am tired of it.

If other people who struggle with apathy are too apathetic to post here with me then I will just try to share my experience as I attempt to climb out of this hole in the hope that others will learn and be inspired by what I share.

I am working with #major depression, #Anxiety #abandonment , #Fibromyalgia , #Brain trauma, #chronic stress, #Toxic environment, #thyroid problems, multiple medications that have apathy as a known side effect, prolonged marijuana use for chronic pain, and who knows what else.

I spend my time being my husband's 24/7/365 caregiver. He is on disability for #Mild cognitive impairment, which means for him that he has basically no short-term memory and huge cognitive problems from being unable to steer his own brain. He presents as a completely normal, but forgetful person to strangers, but the truth is that I do everything for him and get little in return. He cannot be left alone because he would wander away and get lost within a block of our home. He cannot help around the house because he cannot remember how to do things, cannot follow instructions or make decisions, has no initiative, is unable to do his own hygiene, etc... It's brutal for me. He doesn't understand that anything is wrong, either.

But none of that is about apathy! All I do anymore is take care of our basic needs... and hide on my phone playing games, writing, watching video, or playing with my cat in my bed. Oh, and I think a whole lot about what I should be doing.

I am so apathetic that I don't leave our home unless we need to run an errand or have an appointment. I would feel so much better if I walked every day, but... I just don't go. It simply doesn't happen in spite of understanding that it would help.

PLEASE share about your apathy.

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Guilty not-a-parent-yet conscience

I have had thoughts lately that I don't want to have kids, for fear of what illnesses (mental and physical) I am genetically giving them. Society expects us to pro-create, but what if I am ashamed to? Does anyone else feel like this?

#Depression #Anxiety #CPTSD #BorderlinePersonalityDisorder #Stress #thyroid #Undiagnosed #EmotionalDysregulation

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I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.

For more information read my petition…


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But at least it’s a diagnosis ^_^ ❤️

Ever had people say this to you after years of ambiguity? I’ve had all these symptoms with normal test/lab results and doctors telling me I’m depressed as a result (apparently ignoring that I have CRPS), and then wow! turns out I have thyroid nodules too. Yeah it’s something of a new diagnosis, but I haven’t been to an endocrinologist for them yet.

I’m allowed to be scared and stressed about the implications of this, and the prospects of biopsy and surgery. 20 years ago I woke up during surgery on my neck. I remember it clearly and boy does it give me anxiety to think of doctors fooling around there. But at least it’s something different than another normal test result.
#ThyroidNodules #thyroid #Anxiety #ComplexRegionalPainSyndrome #Biopsy #Surgery #scared

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