Chronically ill nerdfighters?

24

Comments

  • turdl38turdl38 Posts: 976 ✭✭✭
    @twirlgirlrox I get that sometimes too.  Fascinate and baffle doctors all the time.
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • twirlgirlroxtwirlgirlrox Posts: 2,056 ✭✭✭✭✭
    edited March 2013
    @turdl38 Doctors look at people like puzzles, not humans, I feel. But whatever I guess. It sucks though to see my parents pay for me to see a doctor and then the doctor won't even acknowledge the reason I came in the first place.
    by twirlgirlrox
    Innocent Little Flower of the Last Ones

  • turdl38turdl38 Posts: 976 ✭✭✭
    I think it depends on the doctor, but it definitely does happen that way sometimes
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • turdl38turdl38 Posts: 976 ✭✭✭
    I feel liek this might be my best place to whine for a minute.  Sorry in advance for typos. 
    I am so over being sick.  I know why I fight, sometimes, but the reasons are hard to cling to when it's the afternon after a clinic visit and I just feel tired, alone, sick, etc.  Yeah.  I guess that's really all that needs to be said.
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • icewinter89icewinter89 Posts: 14
    I have Hidradenitis Suppurativa. (Google it if you'd like) I hate my body with a burning passion. I hate everything about it and some days I wish I could just burn it all to hell.
  • aeryn_of_earthaeryn_of_earth Posts: 57 ✭✭
    I've had migraines as long as I can remember.  It will completely incapacitate me for a day (or three) if I get one, even if I get medication into me fast enough to start battling it back.  I can't afford my prescription stuff anymore and I think I'm developing a tolerance to Excedrin, which is the only over-the-counter stuff that has ever kicked these things.
    Little fly,                             Am I not                        For I dance
    Thy summer's play               A fly like thee?              And drink and sing                  --William Blake
    My thoughtless hand            Or art thou not               Til some blind hand                  Song of Experience
    Has brushed away.                A man like me?               Shall brush my wing.                "The Fly"
  • ConstellationsConstellations South CarolinaPosts: 1,709 ✭✭✭
    I am so happy you made this thread. Especially now that I see I'm not the only one with sucky lungs.
    I've had recurrent cases of pneumonia, bronchitis, upper respiratory infections, strep throat, colds, sinus infections, and otherwise undecipherable viruses invading my respiratory system. I took a lung function test a couple of years back and had asthmatic breathing patterns. However, I have NEVER had an asthma attack. Inhalers for asthma do not work. I have very severe allergies to household dust mites, slightly less severe allergies to cats, dogs, and other things I can't recall. I had an allergy test when I was eight, and I wasn't allergic to ANYTHING then, but last summer, I was told I had many allergies. I developed them over time. We have six cats and a very dusty house, so that sucks. It frustrated me to no end. I'm sick generally 3/5 weeks, and I was forced to withdraw from public school to attend online school. Almost any time I go out in public now, I get sick. I kept grades in the mid-to-upper 90s, but I was missing so many days, and the stress was horrible. I searched for answers, had many tests performed (immune system levels to a cystic fibrosis sweat test), but they all came back relatively normal. Eventually, my doctors threw up their hands and told me it was stress that made me sick. Stress does inflame my lungs, but I'm sure you guys would understand that there's nothing more infuriating than being told your illness is your fault. After plenty of angst, I decided to just accept it. It still plagues me, but no one knows what the deal is, so I basically gave up. See, the illness causes tons of stress, and the stress causes severe illness. Vicious cycle. I also suffer from depression (combined with seasonal affective disorder, meaning it gets worse in the winter), high anxiety, social anxiety, relatively mild cases of both trichotillomania and dermatillomania, and moderate OCD.

    Thank you so much, @turdl38, for creating this thread. Your frustration will ease, even though you're much more sick than I am. Maturing with illness has a weird way of making you accept the unknown.
    "You do not immortalize the lost by writing about them. Language buries, but does not resurrect."
    "I was thinking about the word 'handle,' and all the unholdable things that get handled."
  • turdl38turdl38 Posts: 976 ✭✭✭
    @constellations, I agree that you do kind of accept the unknown easier.  You don't have much other choice.  You never know how strong you are until you have to know.  I mean...if I were to make a list of all the crap I've had to deal with throughout life, it'd be depressingly long, but it is what it is and I got through it...or am getting through it.  
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • acownamedkevinacownamedkevin Posts: 23
    Thought I'd hop into the party and share my letters. CFS and DSPD. I have chronic fatigue syndrome and delayed sleep phase disorder... Those are the physical ones anyway. Allergies aren't much of a problem, I realize a lot of places where I have control with my letters now, unlike last year, but sometimes there are cycles that are easy to perpetuate. At least I've only missed twenty days this year, not... 140.
    I'm Lauren. I'm 15. I like to write, and make films, and stuff. Let's be friends.
  • geekacrossthestreetgeekacrossthestreet Posts: 166 ✭✭✭
    My headaches have been getting a lot worse recently. The Topamax I've been taking is more or less useless and has not done me a bit of good, however, I'm pleased to say that the Baclofen and Maxalt(when I actually have some to take) have been helpful and make me less miserable than usual. However, I also have been to school one day this week out of the six that have happened so far. 
  • himynameisredhimynameisred Posts: 22
    I have Raynaud's, which basically means I'm cold all the time, especially my hands and feet. I also have asthma and that makes exercising difficult sometimes, but I'm lucky because my inhaler always works as a preventative measure.
    My biggest issue is my joints though. I'm only 15, but I have some sort of degenerative wackiness in my knees, hips, back, wrists, and jaw. It all come down from my mother's side, and I suspect the fact that I've been dancing for 12 years hasn't helped things much. Sometimes everything's good, but a sometimes my wrist gets so bad I can't even write or hold things heavier than a couple of ounces. It takes me forever to climb the stairs. It's hard to get to sleep at night because my back hurts.

    I hate that everybody here has to deal with this crap. I wish we could just lead on normal lives and not have to worry about any of it.
  • LishwaLishwa Posts: 78
    edited May 2013
    .
    by Lishwa

  • scarlettplusnoirscarlettplusnoir Posts: 195 ✭✭
    This week I was told I probably suffer from severe Cluster Headaches (secondary to the migraines and frequent headaches I have already been told I have) I am probably one of the youngest people ever to have been given the diagnosis and they actually only have medication for it once you reach 18 so for the next nearly two years I have to control my diet and sleep patterns in order to try and prevent the headaches happening. I've had dreadful headaches almost every week since I was 7 and it can really affect my life so much to a point I've spent this week not being able to sleep because of the pain. 

    For example my headaches come on really quickly and really strongly and I can be in an exam or a lesson or whatever and get one which stops me from being able to thing, read, look at any kind of screen ect. 


    My goal in life is to live forever, so far so good - Charlie Fink
  • LazarusLazarus Posts: 353 ✭✭✭
    I suffer from a chronic pain illness that has yet to be diagnosed, but not for lack of trying. The pain has been around since i was about 5, but it started as infrequent leg pains, and my doctor labeled it as growing pains. This continued till I was about 21. I had stopped growing at the age of 16. After that Arthritis was tossed around, but all my doctor ever did was send me to get one set of x-rays , then he repeated the same blood tests over and over.
    I also suffer from an allergy to the majority of raw fruits and veggies, for some reason I can eat oranges just fine. Recently I suffered from a chronic headache that lasted a month and a half. My doctor called me a hypochondriac. So I lodged a formal complaint and switched doctors. I see my new doctor next Wednesday. So wish me luck!
  • scarlettplusnoirscarlettplusnoir Posts: 195 ✭✭
    @lazarus good luck. You're lucky to just have one doctor in total I see about 10 different doctors a year and none of them ever seem to have been given each others test results. Because I have loads of contributing factors to my headaches (blood, back, breathing, eyes, neck) I have loads of different tests and none of the doctors I ever see look at the big picture. Also because my doctors don't seem to consult I have the same back x-ray done 3 times and then had to have 2 MRI scans both of which will probably have to be redone because they wouldn't wait a few weeks for me to get my braces off
    My goal in life is to live forever, so far so good - Charlie Fink
  • LazarusLazarus Posts: 353 ✭✭✭
    @Scarlettplusnoir Thanks, Well I wish you luck as well. Right now I only have the one doctor, and I really hope I don't need to end up seeing more because I'd hate to have to travel the several hours to a large city to see any specialists.
  • scarlettplusnoirscarlettplusnoir Posts: 195 ✭✭
    @lazarus I hate going to London for specialist treatment it takes up my whole day. But my doctors is like next to 221b Baker street and it is the coolest thing ever I lied
    My goal in life is to live forever, so far so good - Charlie Fink
  • LazarusLazarus Posts: 353 ✭✭✭
    @Scarlettplusnoir my doctor is next to a gas station XD
  • scarlettplusnoirscarlettplusnoir Posts: 195 ✭✭
    @lazarus not quite as cool then. My other doctors are on an estate, next to a different estate, next to some shops and down the road from my school
    My goal in life is to live forever, so far so good - Charlie Fink
  • LazarusLazarus Posts: 353 ✭✭✭
    @Scarlettplusnoir that sounds pretty lucky, though I live in a small town in the middle of a desert. I can't think of any place that would be particularly interesting to have a doctors office, maybe next to some large rocks, some Joshua trees, or near the walmart. actually the ebst place would be near the movie theater which is across the street from my favorite used bookstore.
  • scarlettplusnoirscarlettplusnoir Posts: 195 ✭✭
    @lazarus my town is really normal and pretty and historical and then somehow there is one road which is called Butt road and it has two porn shops. I kid you not
    My goal in life is to live forever, so far so good - Charlie Fink
  • turdl38turdl38 Posts: 976 ✭✭✭
    @scarlettplusnoir, I think they need a "Spoon Me" ice cream shop on that road too!
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • scarlettplusnoirscarlettplusnoir Posts: 195 ✭✭
    @turdl38 there are a lot of things they need on that road but don't have. It does also have two pubs and a tanning salon. And brilliantly it backs on to a road with this primary school where all the parents think they are superior to everyone else and it makes me laugh where their school actually is
    My goal in life is to live forever, so far so good - Charlie Fink
  • RialVestroRialVestro Posts: 6,224 ✭✭✭
    turdl38 said:
    So...I've read seen some threads about depression and about tiny chicken disease, but nothing about chronic physical illness.  I mean...we all know Hank has ulcerative colitis and I know what's "wrong" with me, but...is there anybody else out there who's dealing with feeling crappy pretty much every day?  I guess I just need to feel less alone in my crapness 
    I have suffered from constant physical pain my entire life. Every pain I've ever felt is permanent where to most people it only lasts so long and then they don't feel it anymore I'm stuck with it until I die. What's worse is I'm immune to all pain relievers and anesthetics so I don't even have a way to control it.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • turdl38turdl38 Posts: 976 ✭✭✭
    @rialvestro if they ever do figure you out, please let me know!  I have had very similar for the past 8 years or so
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • RialVestroRialVestro Posts: 6,224 ✭✭✭
    turdl38 said:
    @rialvestro if they ever do figure you out, please let me know!  I have had very similar for the past 8 years or so
    If it's something very specific it may be due to an injury that never healed properly and nothing to do with what's wrong with me. That tends to happen if you've broken a bone and is quite common. My issues seem to be unheard of as most people, including professionals, will not even take the time to listen.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • turdl38turdl38 Posts: 976 ✭✭✭
    Nope, no injury. 
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • daekendaeken Posts: 7
    Following a fall out of the shower almost 4 years ago, hitting my shoulder and jarring my neck, I've dealt with constant pain and numbness in my left arm and chest.  I was fine immediately following the fall, but a few hours later it felt like I was having a heart attack.  It's gotten better and worse since then, triggering near-daily panic attacks; it's hard to tell yourself that you're not dying when your heart is racing and your arm and chest are numb/inundated with shooting pains.  Tons of fun.

    I still don't have a decent answer for what's wrong with me; neurologists have only managed to make it worse thus far, so I've been doing constant research and physical therapy to try to alleviate the symptoms.  Thanks to the help of several friends in the medical field, as well as the joys of diagnostic imagery (how many people can say they have their MRI data on the web?), I've managed to narrow it down to a small number of possible ailments.  The most likely is Thoracic Outlet Syndrome.  We'll see if that diagnosis pans out in the next few months.

    As an aside, it's quite strange to write this here as my first post on the forum.  So uh, hi everyone!
    "What's left behind is just a dream; the sun-kissed sky staring back at me."
  • ConstellationsConstellations South CarolinaPosts: 1,709 ✭✭✭
    daeken said:

    Following a fall out of the shower almost 4 years ago, hitting my shoulder and jarring my neck, I've dealt with constant pain and numbness in my left arm and chest.  I was fine immediately following the fall, but a few hours later it felt like I was having a heart attack.  It's gotten better and worse since then, triggering near-daily panic attacks; it's hard to tell yourself that you're not dying when your heart is racing and your arm and chest are numb/inundated with shooting pains.  Tons of fun.


    I still don't have a decent answer for what's wrong with me; neurologists have only managed to make it worse thus far, so I've been doing constant research and physical therapy to try to alleviate the symptoms.  Thanks to the help of several friends in the medical field, as well as the joys of diagnostic imagery (how many people can say they have their MRI data on the web?), I've managed to narrow it down to a small number of possible ailments.  The most likely is Thoracic Outlet Syndrome.  We'll see if that diagnosis pans out in the next few months.

    As an aside, it's quite strange to write this here as my first post on the forum.  So uh, hi everyone!
    I'm sorry to hear that. That really sounds awful. I have a heart-pounding issue I have yet to tell me doctor about (parents assume anxiety induced), but that's nothing compared to what you're saying. My father has thoracic outlet syndrome as a kid, and he had surgery for it, but it has caused so many problems in his life still. However, that may be because his surgery was much more primative than it is today. I wish you the best of luck with everything, and also welcome to Our Pants! :D
    "You do not immortalize the lost by writing about them. Language buries, but does not resurrect."
    "I was thinking about the word 'handle,' and all the unholdable things that get handled."
  • randomlilnikkirandomlilnikki Posts: 38
    I have symptoms of Marfan's syndrome which are pretty much all to do with my skeleton. My joints are all fairly crap, which has resulted in hip bursitis, a persistent and painful hip problem. I also have daily lower back pain, neck pain and often jaw pain which sometimes lead to headaches, or even migraines. I have tinnitus in both my ears, because of my jaws, which worsens every now and then. And every now and then I get a pain that I can't explain that just sticks around for a while. At the moment it's my ankle. But one of my knees keeps giving way too... 

    Luckily I don't have any of the other scary heart symptoms and problems that can come with it, but I have to keep a close watch.
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