thyroid

#RareDisease

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

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

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.

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

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