Chronically ill nerdfighters?

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  • chronicallymusicalchronicallymusical San Francisco, CAPosts: 3
    Hi, I know this is an older thread. I just wanted to say that I'm living in a nursing home due to my chronic illnesses and meds and stuff. I'm almost 24 and I feel like utter crap most of the time. I have chronic pain almost everywhere and almost 24/7. I just wanted to say if anyone wanted to talk to me about their struggles, I'd love to meet other sick nerdfighters. Talking in general would be amazing!

    Thanks!
    "Out of pain and problems have come the sweetest songs, and the most gripping stories..."
    -Billy Graham
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    its nice to see this thread come back. I think it's good for us to have a place to talk, or share stories or whatever.

    @chronicallymusical I hope you're feeling okay today!

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • chronicallymusicalchronicallymusical San Francisco, CAPosts: 3
    Thanks @BriRose23 for your post! I agree that it's good for us to have a place to talk, etc. How are you doing?
    "Out of pain and problems have come the sweetest songs, and the most gripping stories..."
    -Billy Graham
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    @chronicallymusical I've just been having a moderate flare for the past few weeks. I'm starting to feel better from that, but still a little under the weather. Just trying to stay hydrated! And you?

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  • chronicallymusicalchronicallymusical San Francisco, CAPosts: 3
    @BriRose23 I'm dealing with so much right now. I live in a nursing home even though I'm 23. My pelvic pain is my toughest problem right now. I've had the pain there for 4 years. If you don't mind me asking, what are your flares like?
    "Out of pain and problems have come the sweetest songs, and the most gripping stories..."
    -Billy Graham
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    usually muscle soreness and/or joint pain. It kind of feels like I just ran a marathon. Also any touch that applies pressure is really painful. Some flares cause some breathing and digestive problems/pain. all of my flares are a little different, but they all have the muscle soreness.

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • AprilDawn351AprilDawn351 Middle of Nowhere, NE FL USAPosts: 7
    I found the Spoonies! Yay! Lol. I just joined our pants. I'm a fibromite. It's so nice to see others like me here :smiley:
    I'm gonna need a bigger flowchart!
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    @AprilDawn351 hello and welcome! it seems like I find a lot of nerdfighter spoonies. idk if spoonies are drawn to nerdfighteria or something else, but there are plenty of us! I hope you're doing well!

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • PuddytPuddyt Posts: 6
    I am celebrating a victory today!
    I've had a chronic auto-immune condition since I was 11 and it wasn't under control until I was around 18. In 2015 we found a drug regime that actually worked, but was a pretty big risk - BUT IT WORKED! I got my life back! I was even able to eventually come off of the medications, I finished uni, moved away from home and got my first job as an occupational therapist! Woohoo! I achieved some amazing things, but I got a work place injury, and then my employer started trying to make me quit and basically it all fell apart at the beginning of 2016. My disease came back and was worse than ever, I lost a lot of function in both my arms due to the injury and had to move back home because I couldn't dress myself. So it all around sucked health wise. Now I am a bit paranoid about my health.
    But I found a good physio near my home town and stuck to them like glue - I got the use of my arms back after a lot of trigger point therapy and pain and did two semesters of physiotherapy led pilates. The pilates is amazing! My insurer will not pay for another semester - why would they? I can now lift a jug of milk and scrub pans and dress myself! And as I am currently out of work I probably can't do it anymore - but I found it amazingly helpful - My fatigue from the drugs is less, my mood improves every day I do it and I am able to figure out what exercises I need to do to loosen up my arms when they are sore.
    So at the beginning of my week I wrote out a clinical pilates routine - I am a health professional so I have some idea what I am doing - and looked at it and cried. To do what I was doing in class I had to write a whole page of exercises. It had been a few weeks since my last pilates class so I had pretty much turned into a human slug hybrid in the muscles department.
    But I put together an exercise playlist and tried it.
    And I Did it! it took me an hour and a half and many breaks but I did it! I was super proud of myself - my family didn't seem to get that it was a big deal to me, but I did it! Today is day 3 of my pilates routine and I already feel so much more healthy and like my well self. I'm aiming to do it five days a week. I'm also considering joining along with the 100 days challenge. Is anyone else in a similar situation and looking for a healthy start? I'm basically looking for a fitness buddy for the 100days challenge who gets it - I'm never going to be able to run a marathon because my knees would turn into big fluid filled soccer balls, but I wanna get healthy!
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    edited December 2016
    @Puddyt Congrats! I hope that the new year will be better for you!

    I've thought a lot about joining the 100 days thing, but I'm not sure that I will be able to keep up! I do want to try though!
    by BriRose23

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • mysticnerdfightermysticnerdfighter PennsylvaniaPosts: 20
    Wow...I found some Nerdfighters who know a thing or two about chronic illness. I'm happy. Hey, I was in one fandom where this one person had others convinced I was faking it. Not very awesome.

    So...I have a rare nerve disorder called Complex Regional Pain Syndrome. I also have an autoimmune disorder called Hasimoto's Thyroiditis which is just an inflammation of my thyroid because my body is attacking it. It makes me hypothyroid and puts me at risk for thyroid cancer (like I wasn't already...my mom's a thyroid cancer survivor). Also, I have chronic anemia and the doctors don't know why. I underwent two iron infusions at a local hospital and hopefully they helped. I'll find out more in about a month.

    Of course I think I'm having some major CRPS issues. I was diagnosed in 2014 and in the last two and a half years, I have to undergo physical therapy several times over. I'm now having some issues to where I know I'll be back in physical therapy. Yeah, the PT department at the hospital knows me quite well. LOL
    "There's nothing better than a world where everybody's just trying to make each other laugh.”--Matthew Perry :D

    Don't forget to be awesome <3
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    hi! I haven't been on here in a while, but I'm happy to see this thread didn't completely die.

    @mysticnerdfighter why would someone wan to convince others that you were faking? That's so strange? I have Fibromyalgia, which is a chronic pain thing. What all does CRPS involve? I've never heard of it. I also have a touch of hypothyroidism, but mine doesn't have a cool sounding name.

    So I went to pick up my medicine the other day (before the massive snow storm that turned out to be not so massive) and they greeted me by name when I came in the door. I wasn't sure whether to be happy because they took the time/care to learn my name, or be concerned because I was in there often enough for them to remember me.

    Anyway, I hope everyone here is feeling good today!

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • RialVestroRialVestro Posts: 6,198 ✭✭✭
    It happens more often than you think. Especially if you have something rare that few people have ever seen before and don't show any obvious symptoms. Like people don't believe you can be in any serious pain if they can't see any sign of injury. Some times even if it is a well known illness people don't believe it's real like there are still people that don't think ADD is a real thing. Granted I think there are people misdiagnosed with it who don't really have it but that doesn't mean no one really has it.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    I mean, I (kind of) get not believing that someone is sick/has a chronic illness, but actively trying to convince others to believe that same thing? That's just... I don't even know how to describe it. Childish? bullying? Like, I can't imagine what reason someone would have to do that...

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • RialVestroRialVestro Posts: 6,198 ✭✭✭
    Because they're jerks.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    Its really sad, but so true. No one deserves that in their life.

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • mysticnerdfightermysticnerdfighter PennsylvaniaPosts: 20
    BriRose23 said:

    hi! I haven't been on here in a while, but I'm happy to see this thread didn't completely die.

    @mysticnerdfighter why would someone wan to convince others that you were faking? That's so strange? I have Fibromyalgia, which is a chronic pain thing. What all does CRPS involve? I've never heard of it. I also have a touch of hypothyroidism, but mine doesn't have a cool sounding name.

    So I went to pick up my medicine the other day (before the massive snow storm that turned out to be not so massive) and they greeted me by name when I came in the door. I wasn't sure whether to be happy because they took the time/care to learn my name, or be concerned because I was in there often enough for them to remember me.

    Anyway, I hope everyone here is feeling good today!

    I know, right? who wakes up in the morning and says, "I want to have a rare nerve disorder that no one knows of and very few doctors know how to treat?" If you do that, then you really have some serious issues.

    Oh and that's pretty much CRPS in a nutshell.

    Basically, the nerves on the left side of my body are practically messed up. They are not damaged (although in CRPS: Type II, there is nerve damage; I have Type I), just messed up. Basically, the nerves get inflamed to where I can develop pain, swelling, a burning sensation, a feeling like my limbs are on ice...it's one big hot mess. I spent 18 months using a cane and had to relearn how to walk without it. Thankfully I was able to thanks to a really knowledgeable PT at my local hospital who has dealt with neurological issues.

    There's more about it here: http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/definition/CON-20022844

    Also, I was diagnosed with Fibromaylagia five years ago but I really don't buy it completely. To me CRPS fits a little better than Fibro. As for the Hashimoto's, that is a weird name, isn't it? It's named after the doctor who first discovered the issue. Of course the issue with that is that it causes hypothyroidism which sucks and it also puts me at a risk for thyroid cancer. Because of that and my mom being a survivor, I have to get ultrasounds of my thyroid every year. The most recent just showed that my thyroid is starting to show signs of damage from the Hashimoto's which we were expecting but what happens is that the body attacks the thyroid to the point where it will eventually be rendered useless.

    But I keep fighting.
    "There's nothing better than a world where everybody's just trying to make each other laugh.”--Matthew Perry :D

    Don't forget to be awesome <3
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    @mysticnerdfighter wow thats a lot. I've been through the cane thing a few times, but not for as long. I usually switch between a wheelchair and cane when I need them depending on what I'm doing and how I feel that day. The longest I've ever needed assistance was only 6 months or so. but I don't usually need it often. It's been about 2 years since the last time I needed them.

    Fibro is tricky, but I've never heard of anyone with fibro having your symptoms. For me its mostly muscle soreness and feeling like I just did some sort of massive work out. I also have a lot of problems with tendons and joints. I know some other fibro people have problems with joints getting dislocated.

    Good luck with your thyroid! I hope everything is okay! My thyroid hovers on the low line, so my doctor is hesitant to treat it with medications right now, just to see if it improves when we get some other things under control.

    Keep fighting! I hope you are well!

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • mysticnerdfightermysticnerdfighter PennsylvaniaPosts: 20
    BriRose23 said:

    @mysticnerdfighter wow thats a lot. I've been through the cane thing a few times, but not for as long. I usually switch between a wheelchair and cane when I need them depending on what I'm doing and how I feel that day. The longest I've ever needed assistance was only 6 months or so. but I don't usually need it often. It's been about 2 years since the last time I needed them.

    Fibro is tricky, but I've never heard of anyone with fibro having your symptoms. For me its mostly muscle soreness and feeling like I just did some sort of massive work out. I also have a lot of problems with tendons and joints. I know some other fibro people have problems with joints getting dislocated.

    Good luck with your thyroid! I hope everything is okay! My thyroid hovers on the low line, so my doctor is hesitant to treat it with medications right now, just to see if it improves when we get some other things under control.

    Keep fighting! I hope you are well!

    That's why I always questioned the Fibro diagnosis. I of course learned later from a doctor at a hospital in Philadelphia that with Fibro and CRPS, they are more of a last resort clinical diagnosis because there is no clear-cut test that points to either so who knows, I may have been misdiagnosed with Fibro since I was diagnosed with that in 2012 and the CRPS diagnosis came two years later.

    I have done well without a cane for about two years. I'm starting to have some issues with walking again and I know I may just have to go back to PT and look at options like nerve blocks and injections down the road. I've dealt with this stuff before since I have some shot discs in my back and neck which resulted from a fall I had in my 20s (I'm 39 now). I do know of a good pain management doctor if I need injections so that's always a plus. The last thing I want to do is this thing called a spinal cord simulator which is basically an apparatus they implant that is supposed to stimulate your nerves to act normal. I just don't want to go that route because I have had some issues with surgeries in the past (like when part of my lung collapsed after a surgery to remove an ovarian mass).

    Also, I remember the orthopedic in Philadelphia who diagnosed me with CRPS did tell me that it mimics Fibro so that's why I am like, "I don't think it's Fibro."
    "There's nothing better than a world where everybody's just trying to make each other laugh.”--Matthew Perry :D

    Don't forget to be awesome <3
  • BriRose23BriRose23 MarylandPosts: 1,386 ✭✭✭
    Thats interesting. I know that it's a last resort kind of thing.. I remember all the tests and things to rule other stuff out before they finally just went with fibro. I've never had to have shots for pain before (surprisingly?) I usually just end up with pills. I'm glad that you haven't needed a cane recently. I hated having to walk with one since I'm only 22 now and people tend to give you strange looks. I'm sure you experienced that too, but I hope not!
    I know that a lot of people get misdiagnosed with Fibro because it shares symptoms with a lot of things. I guess it's possible that my diagnosis could change in the future, but so far nothing else seems to fit.

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • beyondtheskybeyondthesky Posts: 7
    I guess I can put my post here that I was going to post as a new thread about my ongoing depression, and throw in health stuff as well...

    Things go back pretty far, my family split when I was five, and in the five years after that, I realized I'm trans, managed to keep a few friends that I never really did things outside of school, and tormented and tortured by life at home. My sister and the daughter of the woman renting our basement would taunt and torment me any opportunity they could, and I would be the one who got in trouble for it. Things were already fracture, and I had to deal with a young brother who was incredibly destructive and ruined a lot of the things I could use to escape from the world. On top of that, although my father had no intention of it, I ended up physically abused and generally neglected, and while I wouldn't realize it till university, the seeds of depression were being sown there. Oh, and there was being the go between in my parents' unable to speak to each other even regarding my siblings and I visiting our mother, not to mention I had to kick her out of the house when she was being abusive towards my father one day (he was begging me to as well, crying for the first time I had ever seen).

    The five years after that started with me moving to a new town, not being able to make friends, becoming more abusive and hateful as well as less sane, along with depression beginning to go from childhood equivalence to depression that should have been obvious (but the transition was slow, and almost all I'd known). I did sports, but was not appreciated there, and continued because I thought I could win my father's approval by being good at something he did, it got me nowhere. My brother and I both have a ribosomal genetic disorder that causes varying degrees of anemia, varying in degree between people for unknown reasons, and since he doesn't produce red blood cells and I was a perfect match, I was supposed to be his donor. Yeah, that didn't work out... they discovered I had the same condition he did, and I was like 12 at the time. Throw in puberty, being trans, and increasingly hating myself for it. With puberty came an uncontrollable sex drive that only made my torment even worse, especially after joining a baptist church (this is in Canada for reference). Also at roughly 12 was when I entered the psych system, spending two weeks locked in a juvenile psych ward with virtually nothing to do, and only a bunch of older teens who had attempted suicide to keep me company. Moving forward, psych stuff got worse, I ended up donating a bone marrow sample to science, couldn't give my brother mine because of having the same condition, diagnosed with asperger's, adhd, conduct disorder, etc, put on ritalin and an antipsychotic to try and control my increasing meanness and hate for the world. Physical abuse almost entirely ended when a social worker became involved, but mental torture began, as well as my father and step mother being encouraged to break me by one social worker to fix the conduct disorder. I began wearing my sister's clothes when no one was around, got caught eventually, had my door removed, and was forced to deal with a "therapist" who was now sexually harassing me about that incident and the previous incidents of me trying to come out and get help re being trans. I made it very clear that if I saw that therapist again, I would attempt to kill him, and so that was the end of me in the psych system beyond the psychiatrist I was forced to see. I also got harassed for masturbation by my parents, and at one point in there attempted to kill them to free myself of the torment, but couldn't bear to follow through with it as I hovered over their sleeping bodies. I was also being bullied and learned that violence was the only way to make them stop, but I also hate causing suffering and have a very hard time actually attacking another person, beyond my growing cruelty, ended up in a few fights that managed to free me of being bullied. Once I was being left alone, I became severely apathetic and showed classic symptoms of depression, as opposed to the usual displaced by hating people and being consumed by that hate. All of that eventually lead to a diagnosis of borderline personality disorder and bipolar 2 as an adult. And being cruel to people I considered friends, definitely that too.

    I started university at a fairly prestigious school, spent a year in a program I hated, eventually switched out. I also started my gender transition during that year, lost the only friend who had stayed by my side because of it, and was kicked out of my parents' house because I'd turn my 6 year old half brother gay. I no longer had people to actively hate, hated the world, hated myself, and depression got worse. Joined the anime club, became an exec, and have been an exec there for 8 years now, changed programs to psych, and people I met at that club were both actively and passively trying to help me deal with my psych issues (all indirectly though). I started renting from one of the older members of the club when I was kicked out, and ptsd/anxiety was so bad and I was so afraid of people that I couldn't go grocery shopping without feeling like everyone was judging me harshly, though the girl I was renting from tolerated me and helped me move past that. Met someone I cared quite deeply for, we broke apart because I had to kick her from the club for her abuse of another member, as well as two borderlines being a recipe for disaster. Became legally homeless, dealt with a landlord who refused to do things about cockroaches, had a roommate unintentionally trying to kill everyone in the house (he was actually that stupid, cleaning by mixing bleach and ammonia), moved a few more times, and completed my psych degree in those eight years.

    Depression was crippling, and I managed to have SRS done about a two years ago. Made a close friend at another club I joined during that time, she managed to break my shell, and the partner she met at said club helped me source drugs I had wanted to try since early high school. Yeah, that ended up being the trigger for the cascade of events causing us to no longer speak. Shortly after surgery, I got myself back into the psych system with her help, ended up with a good psychiatrist, ended up on a medical cocktail that helps, eventually found that LSD is an excellent antidepressant in subthreshold doses and joined a study on that.

    During that time, the surgery and now having ultra low testosterone levels, the ribsomal disorder kicked in. I now needed transfusions from time to time, and the stress really screwed with me, leukemia was also a real possibility of why I wasn't producing sufficient RBCs, and the stress was another piece to why her and I are no longer talking. More recently, last fall, I needed transfusions again, symptoms of pulmonary embolism happened, my RBCs never really recovered, chronic fatigue only got worse, had pneumonia twice, and a few weeks ago was formally diagnosed with pulmonary embolism. About a week ago, I ended up with a cold, and between that and the toll PE took on my body, I ended up taken to ER in an ambulance because I couldn't breathe, and now the cycle of figuring out what else is wrong with me has started (and the clots cleared up with a blood thinner I'll likely be on for life). They figure its my heart, and I haven't heard back on that yet. Got my psych degree, started a second undergrad in bio, not sure where I'm going with that, and had to prove I could do science first (no high school science background, did first year science courses to prove myself), the ticking time bomb of my health seems to be starting to go off, and I suspect that this may be the cascade of events leading to my death. I nearly ended my life more than once in the past two years, but that day I couldn't breathe and went to ER, I had an experience where I saw what death was, and quite nearly died, its changed how I view my own death, even with the depression I can say with certainty that now is not when I want to die, someday I will want to, but not while I still have things to live for. Oh, and I nearly died for a second time last week for the same not being able to breathe reason. My lungs seem to want to be bloodbags, its taken a toll on my body....

    And that brings me to now, seeing my psychiatrist for my weekly appointment in an hour or so, thoroughly hating myself (partly for being trans and never being able to be the person I should have been in that respect, partly for everything I've done to make my life worse, partly for ended friendships). I have no friends, just close acquaintances, and I'm so weak I can't even play my flute without wanting to die, let alone walk to a bus stop without fear of collapsing, and I fear things will only get worse. Maybe the intensive therapy (DBT) I'm on the waitlist for will help, maybe not, I can only hope I get to it and that it does help. And yeah, that's my story...
  • beyondtheskybeyondthesky Posts: 7
    hmm.. can't find an edit or delete button, but I guess that should have been its own thread...
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