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Anyone else out there have a chronic illness?

 

(@papastardust)
Joined: 5 months ago
Posts: 17
Topic starter  

Hello fellow music fiends! My name is Angie, and I am a musician from the Portland area, not the Maine one, the anarchist one (🤣) and I wanted to reach out to anyone else like me, who has a chronic invisible illness. Two October’s ago I was diagnosed, finally, with Sjogren’s disease which is autoimmune. It’s awful and debilitating some days! With this 31 day challenge I was really worried I wouldn’t be able to do it. So far, even though I felt like barfing, I made a post everyday and I am super proud of myself. Don’t worry I am still taking care of myself, because at this point I am a pro at body maintenance lol! If you’re chronically ill like me, feel free to chat me up or DM me! Not a lot of people understand what it takes to get through daily life with an illness that just wants you to sleep in bed all day. So I figured someone else has to be like me! If you wan to follow me, I am on IG @radioactivequilts I leave you with a quote by Frida.

 

“I used to think I was the strangest person in the world but then I thought there are so many people in the world, there must be someone just like me who feels bizarre and flawed in the same ways I do. I would imagine her, and imagine that she must be out there thinking of me, too. Well, I hope that if you are out there and read this and know that, yes, it’s true I’m here, and I’m just as strange as you.”

Frida Kahlo 


(@pixelatedpicnic)
Joined: 4 months ago
Posts: 1
 

Hi! I have hashimotos. It’s been pretty well in check but it does make it hard to do a lot and the brain fog is awful. It’s a challenge to be creative at all sometimes. I just keep noodling though. I know how the motivation is so hard to muster and flare ups never check in to see if it’s a convenient time. 
Big kudos to you for doing this! Take care of yourself <3

 


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(@papastardust)
Joined: 5 months ago
Posts: 17
Topic starter  

@pixelatedpicnic Oh I have hashimoto’s as well! I am just one tiny package of lots of autoimmune tendencies! It also attacked my liver. I am super lucky to be here right now, this thing almost got me 2018! And since the pandemic hit, and I am immunocompromised, I had to quit working in the laboratory, where right next door to my assignment, are the people doing the actual testing for COVID! I haven’t worked since March! Although I had plans to go back to work once we are all vaccinated and such, I am thinking about a career change. Working the way normal people do just doesn’t work for me. I cannot predict what I will feel like everyday, or if a change in meds will cause me to be super nauseous. I was a music major a million years ago it seems, and I now all I want to be is a musician again. Although this time I am more confident about myself, and I am not afraid to ask questions that I don’t know. Also I am a drag king performer and I am trying to work my guitar skills into my performance.


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(@joanofheart)
Joined: 5 months ago
Posts: 19
 

I have a hiatal hernia which makes it hard some days to bend over for long when playing.. singing when it gets stuck in my esophagus and it’s a sliding one so I’ll have stretches of time that I feel I can eat anything without feeling something in my chest a huge amount of gas with anything I eat and fatigue/insomnia because it’s worse at night. I have an adjustable bed and it’s inclined to keep my acid from hoping up while I try to sleep. This week has been rough but I’ve still gotten things in as it got really mad with chills to my extremities trying to work through whatever I ate that made it upset. Every day it’s something but I’m trying to do the 31 days. I’m pushing as well as I know you all are. If you can’t don’t beat yourself up, our health or what we have left of it is important. Recover and then come back at it 


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(@papastardust)
Joined: 5 months ago
Posts: 17
Topic starter  

@joanofheart oh man that sucks! I’m staying strong so far. I’m gonna try and keep it up, I have been pretty good before this about practicing and I really am trying to get into the habit of thinking of this as work and getting up every day. I’m a Drag king on the side so I have been shooting videos and making new looks so I can have a good wardrobe when the pandemic is over. My goal for my guitar playing is to learn the solos to some songs, so when I do my lip syncs, I take out a real guitar and shred the solo. I’m trying to get my hands on a guitarlele made by Vorson.   


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(@joanofheart)
Joined: 5 months ago
Posts: 19
 

@papastardust

oh man! I’ve always wanted to be a Drag King but locally it’s only drag queens. That would be freaking awesome to just whip out the guitar and play makes you that much more of a king right there! 

Yea last two days have been health wise rough my illness is invisible so I look fine on the outside but my insides are like 80 I feel. I’m good with wearing the mask of “being ok” or “I’m fine” so I’m used to having to do things I don’t really have the energy or will to do but do them anyways even if they aren’t great. Perfectionism also sucks. If I commit to something I do it and if I don’t I feel worse for not so that’s far worse to me for some reason.. I can’t explain it I’m like a cat being dragged on a leash this week. My videos wouldn’t have anyone think it tho 


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(@papastardust)
Joined: 5 months ago
Posts: 17
Topic starter  

@joanofheart Yeah no one would guess I have a chronic illness either! About the drag king stuff, just do it! Even if you’re just doing at home, which is what everyone is doing for the time being, have fun with it! And drag kings are starting to be more of a thing now! I thought no one liked them until I finished season 3 of Dragula, and there is a King named Landon Cider and they are SO COOL!! Check them out on Instagram. They are super talented and I was inspired by them so I started doing drag. And I was very much welcomed into the fold in my city. I was surprised! But it’s Portland Oregon, so we have a lot of love to go around. I’ve got two shows online this month and I am so happy! Hopefully once the pandemic lifts I’ll get into more live shows. I only got to do it ONCE right before the lockdown. I even got rebooked off of my debut and was supposed to be in a live show on ST. Paddy’s day! But it got cancelled, lockdown was that week. 


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Emily
(@1995afterparty)
Joined: 4 months ago
Posts: 5
 

Hello! I have ME/CFS and dysautonomia/small fiber neuropathy. Lots of digestive issues due to the nerves/muscles in my intestines not working correctly and poor circulation/blood pressure. And the ME/CFS makes me unable to do much of anything for more than like an hour on a good day. Thanks for starting this thread! It's so helpful to see other ill musicians! 


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Emily
(@1995afterparty)
Joined: 4 months ago
Posts: 5
 

And @papastardust i live a ways north of you in NW Washington! :•)


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(@labellevsletired)
Joined: 4 months ago
Posts: 1
 

Hey everyone, I'm a little late to the forum party, I'm only checking it out for the first time today! Been enjoying everyone's riffs so much!! I've had undiagnosed chronic joint pain for...twelve years now?! I have made a few attempts over the years to try different routes for figuring it out but so far, no conclusive results. Oh and I also have CPTSD. When I first started the challenge, my joint pain was really bad, but as I've progressed through the month, it's actually starting to improve (although I'm also playing for much shorter sessions now). Hope everyone is still hanging in and getting things done when it feels okay, and taking it easy when it doesn't! Thanks for starting this thread. Invisible illness is a hard topic to whip out in casual conversation, especially at shows and with strangers! Thanks for sharing your experiences everyone! <3


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(@papastardust)
Joined: 5 months ago
Posts: 17
Topic starter  

@1995afterparty @labellevsletired Hey thanks for responding! How are ya holding up so far? I’m doing so much better than I thought so far. I try just to do anything and not worry if it sounds perfect or not. If you guys want to follow me in IG I’m @radioactivequilts The past few days have been a little rough, I ran out of a med that helps with the pain at night and I’ve been waking up at 6am ughh. Hopefully it comes in the mail this week! And I should get my new little launchkey mini in the mail to make some BEATS! I’m so excited to try making my own loop tracks 


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(@idiosynanca)
Joined: 5 months ago
Posts: 4
 
Posted by: @papastardust

Hello fellow music fiends! My name is Angie, and I am a musician from the Portland area, not the Maine one, the anarchist one (🤣) and I wanted to reach out to anyone else like me, who has a chronic invisible illness. Two October’s ago I was diagnosed, finally, with Sjogren’s disease which is autoimmune. It’s awful and debilitating some days! With this 31 day challenge I was really worried I wouldn’t be able to do it. So far, even though I felt like barfing, I made a post everyday and I am super proud of myself. Don’t worry I am still taking care of myself, because at this point I am a pro at body maintenance lol! If you’re chronically ill like me, feel free to chat me up or DM me! Not a lot of people understand what it takes to get through daily life with an illness that just wants you to sleep in bed all day. So I figured someone else has to be like me! If you wan to follow me, I am on IG @radioactivequilts I leave you with a quote by Frida.

 

“I used to think I was the strangest person in the world but then I thought there are so many people in the world, there must be someone just like me who feels bizarre and flawed in the same ways I do. I would imagine her, and imagine that she must be out there thinking of me, too. Well, I hope that if you are out there and read this and know that, yes, it’s true I’m here, and I’m just as strange as you.”

Frida Kahlo 

First, thank you all for sharing and @papastardust for asking! I know sometimes it's difficult to share what we are all dealing with, especially when on the outside we look totally fine! I pray you all the best of health and strength, even on days where you feel like you have none.

I myself was diagnosed with Crohn's when I was 16. I am grateful to God because I have not really had much issue with it since I had surgery 8-9 years ago. Crohn's is definitely one of the more invisible illnesses! The most I am affected is with my energy levels, eyesight and joint pain. Haha my friends joke around, and I along with them, because I am prone to falling asleep really fast and even in loud places too xD (even standing up, oof). I do not like the fact that I sleep for hours on end on some days, but sometimes it's what my body needs, I guess!


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(@papastardust)
Joined: 5 months ago
Posts: 17
Topic starter  

@idiosynanca A good friend of mine has Crohn’s and it’s ruining her life and another friend has been in “remission” for ten years. It’s so insane how much illness can vary between people.  I missed two days of the challenge and I’m trying not to fixate on that! I was never in the running for the finalists because I am way too inexperienced for that yet lol. But I made it more days then I thought. My body flared at the tail end and I think it was too much dancing for a drag video that got me. 

 

@joanofheart I think I may have a hernia as well. Can they not do surgery to fix your issue? I’m thinking they will have to do surgery for me if they discover one.


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(@idiosynanca)
Joined: 5 months ago
Posts: 4
 

@papastardust Oh no, I am sorry to hear that 🙁 Yes, it's really wild how much this disease can vary...it's still really misunderstood. I met a little boy once who was going through it too 😓 They removed six inches of my small intestine where it had completely become disfigured and closed off, and one can assume I lost a lot of weight! I hope and pray your friend that's dealing with it heavier than others gets to a point where it's not so much of a burden. 

Pleaseee don't fixate on missing the two days, because you were able to do the 29 other days, which is still a feat in itself! Showing up especially when your body is rebelling just shows how strong you are! As you celebrate your successes, I am celebrating with you 😀 and get some good rest too!

 

Also, @joanofheart I had no idea there were Drag Kings too! Learning something new everyday. That is so cool! You take it easy too, especially now that the challenge is over. We all deserve a good rest!

 

@1995afterparty hang in there! I can't imagine what you're dealing with, but I pray your strength!

@labellevsletired wow 12 years is a long time to not know what's going on, omg 😱 good to read that things were improving though! I say it a lot, but music really does have this mystical healing factor to it!

And hey, the more we talk about what we are going through, the illnesses become less and less invisible 😀 


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