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Thread: Chronic Illness, Anyone?

  1. #26
    God/dess Selina M's Avatar
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    Default Re: Chronic Illness, Anyone?

    Quote Originally Posted by carmen_b View Post
    ^ What I found with a year or trial an error for bladder issues are that coffee and alcohol are advised NO GO's.

    This can be a horrendously bitter pill to swallow especially with those of us " on the edge " of a condition where we know we can *sometimes* have the irritant .
    Yeah but I'm not giving up the coffee since it's been pretty much decided by both doctors + a PT that my issues are not the bladder itself. It's the muscles pushing on the bladder and/or preventing it from emptying. My current bothersome symptom of pressure-pain from underneath doesn't care what I drank, I've gotten it from water and herbal tea. I drain things and it turns out to be generally at least half full and all discomfort is relieved. They say you're supposed to have a capacity of 4-500 mL and I seem to get that at around 2-300 so not sure what that's about.

    My insurance approved the sedation & nerve block but not the Botox. However, it's way less expensive than I was anticipating - about $2100. So I'm booked for 2/4 and praying that helps.
    Also doing dry needling in a week... I hope that doesn't hurt too badly... I had 12 weeks of an electroacupuncture type thing with a needle stuck in my ankle/calf area and it HURT when they got it in the wrong spot & the muscle seized.
    "People jack off with the left hand and point with the right."

    "You can check out any time you like, but you can never leave."

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  3. #27
    Featured Member LoveyD's Avatar
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    Default Re: Chronic Illness, Anyone?

    Selina, I hope you can find some relief. What a hassle!

    I hope everyone here feels better.

    I have high blood pressure.

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  5. #28
    God/dess SnuffleUffleGrass's Avatar
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    Default Re: Chronic Illness, Anyone?

    Quote Originally Posted by LoveyD View Post
    Selina, I hope you can find some relief. What a hassle!

    I hope everyone here feels better.

    I have high blood pressure.
    My boyfriend successfully manages his high blood pressure. All he really deals with is the random nosebleed and looking a bit flushed as side effects from the meds. Modern medicine is great!


    My IBS has been acting up but I manage it with diet and rest.

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  7. #29
    Featured Member R-209's Avatar
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    Default Re: Chronic Illness, Anyone?

    Last couple of days have been okay, a few flares that dissipate sooner than before and the worst of it confined to later evening. Am hoping that my increase exercise/taper meds strategy might be having some effect. Actually had a bit of energy today.

    Probably jinxed myself posting this.

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  9. #30
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    Default Re: Chronic Illness, Anyone?

    Here! I have autoimmune antibodies. My RNP and ANA are positive yet doctors can't find any disease.

    I took matters into my own hands and changed my diet, start working on my traumas and most days I feel 90% myself
    which is a hell of a lot better than how i was feeling in 2018 when all of this first started. Two weeks ago I was doing everything right and felt like a million bucks and then I had a pizza and crashed hard. Luckily for me the "flare" only lasted a day but I felt like shit. Anyone that has a chronic illness yet hasn't changed their diet is doing themselves a disservice. If you can afford fruits and vegetables, please add more of it in your diet. A lot of these issues stem from vitamin deficiencies and unfortunately doctors only address symptoms. Working with a functional medicine doctor can be helpful as well. You can find a reputable one on ifm.org.

    I have faith in myself and the universe that this is 100% reversible. it's just a matter of finding a practitioner that actually knows what they're talking about. I know a lot of people that consider themselves chronically ill yet choose to keep doing the same very old thing that got them sick in the first place. I can't. I couldn't. I had to fight for my health. There is hope.

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  11. #31
    God/dess SnuffleUffleGrass's Avatar
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    Default Re: Chronic Illness, Anyone?

    I have bad fibro flares when I'm stressed. Just saying. Reducing stress is always a right step for anyone with autoimmune issues.

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  13. #32
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    Default Re: Chronic Illness, Anyone?

    wanted to pop in and say how sorry I am to read about the individual trials and tribulations of autoimmune diseases. bodies suck!

    i have hidradenitis suppurativa, been suffering with it for 31 years now. didn't even get diagnosed or know what it was until 7 years ago. gynos making me feel ashamed of myself with remarks like "what's thaaaaaaat?" during exams. i'm like, can't you tell me what it is? can't even tell you how many doctors i went to try and get diagnosed with year after year after year and how nasty they were to me, making me feel dirty about myself, like i dont know how to clean myself.

    fast forward to when i found out what it was and finally had the power to do something, expensive immunosuppressants or biologics (scary as hell before the pandemic and even scarier now during it!), even got recommended chemo to reset my immune system without any guarantees (no thanks guaranteed or not!) or alternative treatment which was taking zinc (30-90mg per day which just makes me vomit constantly) in conjunction with the autoimmune protocol diet (better known as the AIP diet...no nightshades, no cracked pepper, no grains, no dairy, no legumes, no alcohol...felt like no everything! haha). i strictly adhered to it for 2 years, adding one food at a time to see what was a trigger...a very slow and arduous process. i went into remission for the first time in 24 years, clear skin, just a scar ravaged body, but man, did that diet ever mess up my relationship with food. i was able to check out scar treatment centers but they warned me if i came out of remission they would have to pause the scar treatment, so the fear of eating at a restaurant or a friend preparing food with some trigger food in it, you name it, i was scared to eat because of a flare.

    food is super communal and one of the main ways to experience culture in different countries. i felt like i was missing out on life, culture, and never felt lonelier. i'm no longer in remission and always have flares and i think about taking the zinc again, but the thought of the throwing up brings me to tears. kind of like a damned if you do, damned if you don't type situation. i even tried taking it right before bed, but would wake up vomiting! pfizer has a new medicine in trial, wonder how expensive and effective that will be. i wish there was more balance when it comes to chronic illnesses. it's a crap deck of cards to deal with for sure




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  15. #33
    God/dess justanothercamgirl's Avatar
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    Default Re: Chronic Illness, Anyone?

    Quote Originally Posted by seashell View Post
    and I am just wondering if anyone else has a chronic illness? Or a suspected one? How do you handle it? Has it affected your decision to do sex work?
    I have a chronic illness. It ended up getting so bad that I eventually had to quit sex work all together. 5+ years later, my health has finally started to somewhat stable out so now I am just slowly dipping my toes back in the water again to see how my health does with it. Fingers crossed that things go okay. If not, I'll just have to quit again.

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  17. #34
    God/dess Selina M's Avatar
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    Default Re: Chronic Illness, Anyone?

    ^I also largely retired because of mine. 3 years ago, when I first went to physical therapy and ended up provoking awful nerve pain, I pushed through and managed to work 2-3 nights a week and 4.0 an 18 credit hour semester. Now it's nowhere near that level, but it's like I just have no more fight left :/ Dancing is just so much emotional labor that I don't have the energy for.

    I'm booked to get a sacral neuromodulator implant at the end of the month. The goal is to regain my ability to pee & make my pelvic floor muscles behave and stop having spasms/being hypertonic. It's a 2-3 week 'trial' with an external battery and if it works they put in a permanent battery.

    I'm very nervous, partly about being under, partly about having metal with electrical current in my back/hip/butt, but mainly about it possibly not working. The success rates for it are all over the place. I'd give anything (except for any of the living beings that I love, lol) for it to work.
    "People jack off with the left hand and point with the right."

    "You can check out any time you like, but you can never leave."

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  19. #35
    Senior Member FrankieSkyPrivate's Avatar
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    Default Re: Chronic Illness, Anyone?

    Quote Originally Posted by seashell View Post
    So after many years of unknown health issues, I now know that I have a chronic illness (Ehlers Danlos Syndrome). Basically, my collagen is defective, making my joints, blood vessels, and organs extra flexible and preventing them from doing their job properly.

    Totally explains why I've always struggled to hold a normal job, and sex work was really the best option for me.

    I have some really bad symptoms right now... can't walk much, can't really leave the house, can't tolerate most foods... and I am just wondering if anyone else has a chronic illness? Or a suspected one? How do you handle it? Has it affected your decision to do sex work?

    My heart goes out to anyone with serious health issues. It really is quite a battle.
    I send you my best wishes and positive vibes to handle the situation, tons of love and support from all the forum

  20. #36
    Featured Member R-209's Avatar
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    Default Re: Chronic Illness, Anyone?

    My pain has been suspiciously less for the last few days. I've had false hope before only for it to come back worse than ever, but there is another factor now. I've started the med taper, finishing one and beginning another. This is the one I thought had the most chance of causing the problem, if it even is a med problem. It will take twelve weeks to finish the taper. I've been having relatively minor withdrawal symptoms. I am absolutely terrified of being off the med and feeling the pain again. All the worrying is likely to cause me to tense up and make the problem worse, of course.

  21. #37
    God/dess ~Carmen~'s Avatar
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    Default Re: Chronic Illness, Anyone?

    Quote Originally Posted by justanothercamgirl View Post
    I have a chronic illness. It ended up getting so bad that I eventually had to quit sex work all together. 5+ years later, my health has finally started to somewhat stable out so now I am just slowly dipping my toes back in the water again to see how my health does with it. Fingers crossed that things go okay. If not, I'll just have to quit again.
    I'm glad to hear that your condition has stablized enough to try working again. Good luck!

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  23. #38
    God/dess justanothercamgirl's Avatar
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    Default Re: Chronic Illness, Anyone?

    Quote Originally Posted by ~Carmen~ View Post
    I'm glad to hear that your condition has stablized enough to try working again. Good luck!
    Thank you so much! Fingers crossed for sure.

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  25. #39
    God/dess seashell's Avatar
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    Default Re: Chronic Illness, Anyone?

    Wow, this thread is so supportive! Thanks for sharing your stories, everyone!

    Just to update (I was away from sex work and away from the forum), I'm doing much better, and my health stabilized again. I'm thinking about returning to stripping part time... now that I understand my health better, I feel more confident about taking precautions and going for it.

    It's crazy how your body... and mental health... can have such intense highs and lows. I just really appreciate being an able-bodied person again, having some freedom, and being able to work!

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  27. #40
    Senior Member Percy's Avatar
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    Default Re: Chronic Illness, Anyone?

    Besides chronic anxiety. I had Rhabdo and I can't seem to get back to myself. Every time I try to work out it feels like it is coming back. Before I lifted weights for years. I feel the fat piling on. Today I started a yoga routine where i do yoga daily and then I'm probably buying a treadmill because my allergies.

    Rhabdo is short for a very long word, rare and deadly. NOBODY wants to get it...I got it from working out but no reason why. I deal with it daily and it's scary. I don't want it come back. It gave me PTSD. I was hospitalized.

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  29. #41
    Curious Guest ThaliaAndreas's Avatar
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    Default Re: Chronic Illness, Anyone?

    Yes, I do, that is the whole reason I do dancing and camming. I have severe flare ups, making my own schedule and accumulating a lump sum of money helps if i have to suddenly take a month or two off then hustle fast to pay my living expenses. I started on vitamins, and healthier eating which has helped allot. I would also get constant flair ups of throat infections. In the morning I started drinking a quarter of bottle of apple cider vinegar. I also make green tea, with manuka honey, ginger and lemon. Doing this seemed to be helping throat infection not flare up as easy.

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  31. #42
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    Default Re: Chronic Illness, Anyone?

    hypertension is also chronic right?

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