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Anyone with CRPS and Celiac? I’ve had CRPS for about 4 yrs and Celiac for 4 months. #CRPS #Celiac #Asthma #autoimmune -tradingcard collector

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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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Spasm attack

My actual stomach keeps feeling like it is having spasms. Hurts so bad. All of this is so concerning and new. Ughh #Celiac #celiacissues


#saturday time out!

Taking time out from my troubles for a few hours. Managing several chronic conditions and day to day tasks is mind boggling to say the least.
#breast cancer survivor of 18 yrs, #Psoriatic and osteo arthritis, #Asthma , #Bipolar depression, #Celiac disease,#Loss of hearing in one ear, #chronic pain - full body,#Fibromyalgia ,#Psoriasis , #lactose free #Gluten free, # preemie, ....


Share your experience with depression and connect with people to support you.

What do you do?

What do y’all do when you are going over to someone’s house for dinner? Like unless they have an allergy, I have found that it is hard for people to understand cross contamination. #CeliacDisease #Celiac

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I'm not planning on writing a novel about my pandemic year. #PTSD #Celiac #autoimmune #Trauma #pandemic

I've already lived it once. I'm going to forgive my past and set new intentions for a better future.


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#Celiac dinner 🍝 don’t mind the light fixture... we’re redecorating lol

Not fully homemade but it’s dinner I put together that was ordered or a TV dinner. Finally was able to stand on my legs long enough to do this :) kinda proud of myself so I wanted to share :) it’s gluten free lasagna (Udi’s) with a Cesar salad I made and instead of croutons I used Parmesan crisps :) and the there’s Brazi Bites in the middle :) if you’re looking for something different from croutons I highly recommend the Parmesan crisps ^.^ #Glutenfree

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Finally a place with people who understand!

I struggle with celiac, pre-diabetes, arthritis and anxiety. I left FB...don't do Twitter. My fingers are stiff and knotty. Knees hurt like burning when taking stairs or trying to get up from sitting. I am currently going thru a severe flare. Frigid temps and bad weather aren't helping me. My sacroiliac joint and lower back got so painful suddenly the other night that I couldn't move, walk or turn. I felt like a turtle on its back. Can't fully straighten up and stairs are excruciating. Now resting with alternate heat/ice with husband home. I am grateful you all get it. People around me don't realize how I feel and I don't get into it. I don't have any resources in our area for support groups. So tired and sleeping or getting to sleep is very difficult. I am glad to know others understand. #RheumatoidArthritis #Osteoarthritis #Celiac #prediabetes #bloodsugar #Glutenfree


Heat hives?

Last night I had the strangest reaction. I was feeling hot in the house and started itching my legs. I thought nothing of it. Hours later I was still itching and feeling like my legs were burning. I do have hives from our dogs but it was never this bad. I felt slight relief after a bath and medicine. But even now I still feel a burn and want to itch. Is this common in hypothyroidism or celiac disease? I was just wearing sweatpants, and in a blanket. I think it’s hives but it is hard to tell on my legs. I do get hot easier but never on my legs like this. I didn’t eat anything out of the ordinary that I haven’t eaten before. My mom thought it was possibly my new bath products but this was hours after my last shower and I used it days before. #HypothyroidismUnderactiveThyroidDisease #Celiac #Hives


Celiac Books

Has anyone found any books written by someone with celiac that isn’t about first getting diagnosed/ how to go gluten free/ recipes. Every book about celiac feels like it follows the exact same pattern and has roughly the same content so if you have come across any in which someone isn’t speaking to GF newbies that you have enjoyed, please share!

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