Living with a chronic/"invisible" illness
 

You may get it all the time " ... but you don't look sick"

It gets tough, having the outside of a 19 year old with the insides of a 70 year old, but I've found various support groups on the internet that have helped a lot and maybe I can be of support to some of you here =3 so feel free to share stories etc.

I issues are mainly gastrointestinal

I have
IBS
Endometriosis
Acid Reflux/GERD
Orthostatic Hypotension
Depression
Anxiety

Discuss medicines, your "daily cocktails" of meds, various funny stories, various not so funny stories, or anything related to the matter. =)

I hope I did this okay *blushes* first topic on a forum but I feel chronic illness awareness is really important.

oh thank you jesus.
i wanted to make something like this but i didn't know how to go about it. this is a serious issue and a lot of people are living with an illness that they feel only they have. it really sucks.

i have serious heart problems.
born without a right ventricle, holes in the heart, hardly any pulmonary[sp?] arteries, and four other major things. i'm seriously wondering why i'm still alive after 4 open heart surgeries and a pace maker.

i also have bi-polar disorder and i HATE those people who say things like "omg i do too because i'm happy one moment, but sad the next."
:|
don't get me started.

depression and anxiety i feel you on. my girlfriend has IBS.
"Endometriosis" is new to me, so i don't really know what it is. would you mind telling me?

i don't take meds currently [mixed blessing]
but when i do i know it'll be fun to list them all.

Bipolar disorder is VERY misunderstood. you automatically think of someone being nice one minute and then throwing things the next. nooooo it's much more ... well I don't have it but live with someone who does. It's very hard. It's even harder on him and I wonder how he gets by some days ...

IBS is horrible. I was poked and prodded, my surgeon went through all 20+ feet of my colon well ... large and small ... through a laparascopy.

when he found nothing he said I had IBS. and that's what it is. a diagnosis through elimination. you have to go through the wringer to get that diagnosis ...

I'm on hyoscyamine (levbid) for that.

I'm on klonopin and cymbalta for depression/anxiety.

endometriosis is when the lining of the uterus grows in excess and attaches itself to the outside of the uterus and/or onto other organs. each month when the lining tries to exit (through your mentstrual cycle) the attached tissues cannot move so they just sit there and bleed on the organ causing internal bleeding, scarring, adhesions, and as you can imagine, pain.

uhhh but mine's maintained through continuous birth control. NO placebos. ever. so that means no periods. ever. except my medicine has been wearing down lately, maybe it's losing its luster? cause high stress situations have caused some spotting, but I've been in higher stress situations than this and it's kept working. maybe it's time to up the dose after two years!

oh yes, mixed blessing indeed *rolls eyes* it's terrible, isn't it? "oh that didnt work, try this!" I have to keep a medicine card in my wallet XD nice to meat you!

i'm so sorry to hear that. i would hate to have anything shoved up my butt ;;
i feel sorry for my girlfriend when she got diagnosed. owe.

i envy you on the periods thing because mine get so bad i throw up. xD
gotta take the bad with the good.

i used to take lexipro, then effexor, then wellbutrin until i was rediagnosed as bipolar when all my medicine put me into manics and i would be up for days on end. it was awful.

nice to meet you too <3

lmao you took the same meds I did in almost exact same order. I had some added in there, like I was on friggin remeron and risperdal and zoloft ... not all at the same time ... that'd drop a horse ...

well no, a laparoscopy is where they put a camera in through your belly button and then make a couple of tiny incisions on your abdomen to manipulate instruments.

but I have had a colonoscopy before. the process itself is easy. they put me under the whole way for it and I woke up and they told me to pass gas XD

the day before is the worst part 20 laxatives in one hour, 8 more pills the next! but the liquid form of it is rancid, I've heard. so I really got lucky at my colonoscopy!

when I'd get my time of the month it'd be like a default day off cause I couldn't move. they had me on vicodin and everything.

but the birth control got rid of my scarring and everything. within two months. it was crazy.

some girls have to go on lupron, which is medically induced menopause. it's horrible, my one friend got lupus from being on it.

I've got two other friends, 20 and 22 who have both lost ovaries to endometriosis.

it's devastating. I got off lucky.

Poor you. ._.

When I eat just a teensy bit too much, amounts of food come back up (about half a mouthful per time, every few seconds to minutes, lasting a few minutes to 1.5 hour). People hear it too, and it makes me very afraid to eat in the presence of others >_< My boyfriend described it as the sound someone makes when they're about to vomit. I went through several tests but the only thing they could come up with was something that only babies have when their stomach isn't fully grown yet. Which can't be it, because another test proved that my stomach works like it should.
Try convincing people that the sound you're making doesn't mean you don't like the food, it's just something that always happens when you eat too much. ._. Or sitting in a silent university class surrounded by 200 people right after lunch, and suddenly a mouthful of food comes up and the people next to you stare at you uncomfortably.

Oh, and due to a surgeon fucking up my wisdom teeth surgery, my right jaw dislocates and relocates again whenever I try to chew something chewy (like steak or winegums or sometimes even not-so-chewy food, like bread rolls) due to the cartilage there having been pushed out of place. I have two options: either have surgery to remove part of the cartilage, which will result in very early arthritis there, or deal with the situation for the rest of my life. So, I can choose between pain and pain. Huzzah.

Well, at least I don't have to take medication for anything anymore since they found out the stuff that was supposed to help my jaw cartilage didn't do anything :XD

oh my goodness. that sounds like something's more wrong with like your gag reflex or something. maybe it's a bad form of acid reflux even. like when the food comes up, and I know this is gross, does it taste like ... so foul you can't even believe? like worse than regular throw up?

as for your jaw dislocation, dude you should definitely sue for malpractice!

isn't there anything else they can do?

Wow, that's a lot of stuff to have to live with. I can relate in a way because I get severe panic attacks(although they've vanished almost entirely lately). When I did get them though, it was really bad. I would even call them minor hallucinations. Do/did you get those because of your anxiety?

Someone who this topic really reminds me of is my boyfriend. He has really bad stomach problems and only recently started going to the doctor. They've been running tons of tests on him, but so far they've only managed to rule things out rather than saying for sure what it is. Almost every time he wakes up, he throws up and feels really sick. It causes major issues in both school and work. It's one thing to be really sick a couple days a month, but to be really sick constantly...the teachers especially seem skeptical about whether he's really sick or not. It doesn't help that he doesn't know the name of his sickness or any way to control it.

I know what it's like when people don't understand your condition.

I have Aspergers and I'm fed up of people thinking that it's Autism. Sure it's related but it's not the same thing.

Get a clue you moronic Humans.

i have EDNOS, anxiety, adhd, and depression and am on concerta (for the adhd) and cellexa (for the depression/anxiety.

i also have wicked bad allergies for which i take nasonex and cingulair nightly as well as getting two shots a week. bah.

i try not to talk about my various ailments unless i know the person i'm talking to has dealt with/is dealing with something similar.

I have a list of things myself...

ADHD
Mild Bipolar
Gastritus
Arthristis (right ankle, long story)
God-knows-what-it-needs-surgery in my right wrist
Athesma
Migrains
Insomnia

ADHD, yes indeedy. I've had it all my life, and yes, they put me on glorified speed. It's probably the long term cause of my bipolar disorder and gastritus. The meds started giving me and ulcer in the sixth grade, and I stopped them cold turkey, which coupled with the usual adolecent bliss was fuuuuuun, let me tell you.

I have been diognosed as mildly bipolar. It's not bad, to tell you the truth. I have a nasty temper from it, and I go through long up and down cylces, but I can manage without meds.

Gastritus is a stomach illness caused by mucus mixing with your stomach acid in entirely too large proportions. I'm lucky I can eat. I'll leave it at that.

Don't sprain your ankle eight times in five years. It hurts.

My wrist. Dear god help me. It started about eight years ago in math class. My hand would spasm so badly I'd drop my pensil. It happened nearly every day. Around high school time I developed a click in my wrist, and every now and again things would cramp up. Things seem to have reached a stand still. My family is telling me I shoudl see a doctor, and I'm refusing, because I'm more than a little certain it will require surgury, and I hate needles.

My lungs suck!

I get migrains from my mom, sort of. My aunt has them like I do, and mom gets them maybe three times a year. I'm lucky if I only get them three times a month!

I've been an insomniac since the third grade. I've never figured out why. I talked to my doctor last year, and I now have sleeping pills with a rather interesting side effect. They make me hallucinate. The first time I intelectually knew there were no barbed wire boxes in front of my door, but it still took me a while to convince myself that I could walk safely.

I think that's it, except for the remnants of a rather rough existance. Let's just say I fell out of trees a lot.

@ reflux: Sometimes it tastes like that. (This may sound gross, don't read on if you don't wanna read it >.>) When I eat too much, small portions of food come back up that taste exactly like it did when I ate it. Sometimes when I was eating in a hurry, small chunks come back up and I have to chew them before I can swallow them again. x_X When I've really eaten too much and I'm at home, I go to the toilet to spit out the excess food. After a few times of spitting out stuff, something starts coming up that tastes extremely foul and bitter, as if I'm spitting out gall. D: Twenty times as foul as regular vomit.

I figured I could sue, but I probably wouldn't even win enough to cover the cost of the court sitting and lawyer... and it wouldn't give me my healthy jaw back. The hospital would probably say it was a small mistake in a routine operation, and that my cartilage was too weak or my wisdom tooth was so stubborn they couldn't remove it without damaging something else. There's no other option to fix the jaw... I went to a chiropractor hoping that he could work the stuff back into place, but the therapy and meds didn't do a thing.

@ kagehikaru: Gastritis? That sounds terrible D:

i finally got medication for my ADD.
i'm so happy, because i tried the medicine today and i can do EVERYTHING. i can focus and just... get things done for once. i'm so friggin excited.

next on the list - bipolar disorder.
:/ i need to stop getting in my car at three in the morning and drive across town.



Weeshaaaa i had no idea.. i'm so sorry to hear that.
i flunked out of my semester in college because it was just too much work.
i don't like it how people think we're just making stuff up :/ it sucks.

i hope your friend knows better to not assume you're lying >.o




i have no idea what EDNOS is D:

oh my goodness guys, I'm sorry for being out for so long.
I'm so happy you guys felt comfortable talking and everything. Totally use this as a place to vent.

As of late, my birth control has been malfunctioning. with my endometriosis, I can't have a period ... it's horribly painful ... so they put me on continuous birth control, all active tabes which means no periods. but lately it's been going off-kilter when I stress out. I'll spot and bleed for three days or so. Not only does this ruin my underwear (WHICH PISSES ME OFF CAUSE MOST OF THE TIME THEY'RE MY NEW ONES D:< ) but it hurts like hell. I'll have to pop Ibuprofen 800s every few hours and just have to be zonked out.

last night at work I could barely focus ... I had a cold and was out of it from the ibuprofen 800 ...

so I called and asked for a nearer appointment. they said october 7th.,

now here's the thing ... that's when my psychiatrist appointment was supposed to be. and I had to reschedule the psychiatrist appointment once already! So I do reallllly need to see him soon ... I haven't seen him since school started and of course I've been worrying myself sick over school ...

*sigh* so there's my update. Now that I know you guys, feel free to update me on your lives through this thread, through messages etc ...

______

Juniper - my anxiety isn't so bad that I get panic attacks often at all. Very rarely I will get one. I will have to ask my friends who get them about the hallucination aspect ...
and I know how your boyfriend feels. Junior year of high school ... every other week was a medical test ... had two surgeries ... then just being sick in itself ... no one believed me ... i t helped weed out the weed out the true friends from the fake ones though ... the ones who'll be there for you no matter what.

mad hatter - oh boy you've been through the wringer haven't you? *hugs* IBS is hard to talk about because number 1, it's a relatively commonly diagnosed condition and number 2, it has to do with going to the bathroom. I myself have IBS-A ... it alternates. I lean IBS-C though and it's rough only going once a week sometimes. everything ... it's like you can barely eat ... I'm too afraid to eat during the day so I hardly eat until 6pm ... it's horrible to live with so just know I'm here.

Lana - *nods* I have to aspie friends and they are extremely intelligent and talented. one's a whiz with computers and the other is just already so smart. people do need to get a clue, it is a very misunderstood condition.

cake - EDNOS sound vaguely familiar, will you remind me of what it is? That's a rough cocktail of medicines without the allergy ones even! I'm on cymbalta and klonopin for my depression/anxiety. I really hope you do well and don't feel like too much of a zombie like my medicine tends to make me feel sometimes <3

Kage - they thought I had chronic gastritus at first. it's horrible. my sister had a mild case that went away but it's a very ugly condition ... I bet you've mastered the 90 degree bend/walk, haven't you? haha. oddly enough when they put me on anti-depressants, they made my migraines go away O_O that's why I went on them in the first place and it was eerie how fast they worked. good luck and godspeed on your wrist honey. sounds like arthritis or something to me but I pray it's not.

Volu - yes the foul taste makes you want to gag. ughhhhh. sounds like it could be part reflux. I kind of have a weird thing ... I have tonsilloloiths which are white things in the back of your throat http://en.wikipedia.org/wiki/Tonsillolith there's a better explanation but it's real bad and it's disgusting how it tastes. blechk.

weeesha - omg that's horrible honey. I'm so sorry *hugs* you must feel bad afterwards but it's not your fault and know that we understand. and you'll find out who your real friends are that way; they believe you when you tell them

jones - (doesn't feel right calling you dyke XD) so glad you got medication and can focus, honey! congrats!

____

well I guess I'm back now, I'll try to stop in more often.

I mastered the 90 degree bend/walk a long time ago. I won't tell you how many times I've puked in the past year, mostly cause I don't like to think of it. And it used to be worse. (All for different reason, or mostly anyway)

I seem to have developed arthritis in my hip. I knew falling out of all those trees was going to come back to haunt me... I just didn't think it would be in my twenties. >.o

@Jones: I hope things go better for you with your ADD meds than things went for me with my ADHD meds. They really messed me up, and I'm still recovering ten years later.

that's a tough call gin
but i think the physical pain should be dealt with first, because it will also cause a lot of mental stress. when you get that out of the way your anxiety should be a tad clearer. i hope EVERYTHING gets better for you real soon, because you're a sweetheart.
man and i thought i had bad cramps. i just vomit a lot and refuse to get up from sitting down. i read that working out REALLY helps it out because it lets blood flow better
i'm not sure if that would be a good solution for you, but if you're able to you might be able to give it a shot?


and don't be shy to call me dyke ;D lawl.
my name is emily so if you can remember, feel free to call me that.

kagehikaru
oh my god, what happened?!
D: i took ADHD meds when i was younger and i got SO violent coming off of them.
i have always had anger issues, and with my bipolar it makes it even worse.
but like when i was talking to my mom i started getting really angry about how my computer is a piece of crap and i threw my phone, car keys, and made dents in the wall. i also have... shit i don't know WHAT it's called but basically when i get mad or upset it's like i'm watching this girl go crazy, just wondering how bad it's gonna get.
but i have been able to shorten the episodes and it takes a lot longer for me to get upset.

i've been taking 20mg doses of something that starts with a V, and i took the 30 today and i like it a lot.
i can multitask, but focus on everything i'm doing.

and i'm sorry to hear about your hip D:
DRINK DEM MILKZ?


ANYONE who knows ANYTHING about bipolar disorder
sad thing is i can't tell if i'm getting sick right now...
i've been so into my art and i've been going to bed at like... 12 and waking up at 8. but that's 8 hours of sleep.
but i havn't been eating and i got less sleep last night.
i'm still new at being able to tell when i get sick or not and because of my new meds i think my cycles would be less rapid. but also because of them things have changed and i don't really know if it's the medicine or if i'm getting sick.
i'm starting to do a lot of projects, like sewing and artwork. but i'm not neglecting my friends.
D: i'm just scared if i'm getting sick again because my mom said she was going to put me in the hospital. i'm in college i can't do that shiz D:<

Well, I quit the meds because I was starting to have severe stomach pains, and other intestinal issues from the meds, and I'm still struggling with them now. They're better, but not by much. And like you, I had a lot of anger issues, but that comes with quitting an addictive medication cold turkey.

But the biggest problem I had facing me coming off the meds was that I'd started them in the second grade, and hadn't been off since. In that time, I had been forced into a persona, the person they wanted me to be. When I quit them I didn't know who I was anymore. I knew my name, I had all my memories, but I didn't know me. I had to start from scratch, and completely rebuild my personality, all the while trying to deal with the mood swings, headaches, etc., from coming off meds, along with the usual teen angst, and trying not to fail middle school and high school. I lost a lot of friends that way.

As such, I'm nervey about taking pills of any kind, even my birth control, even pain medication. I don't ever want to be addicted to something again. Although now when I hear people complaining about not being able to kick addictions I can tell them "Hey, I kicked a speed addiction when I was ten. You don't get to complain."

I'm sorry about my hip too. Of course, it wasn't just the trees. It was the car accident too. I'm seeing a chiropractor though, and while I may still need a hip replacement by the time I'm my mom's age, at least I can say that I tried.

kagehikaru
oh no... i'm so sorry to hear that. i really am.
and anger issues is pretty much genetic in my family. i don't know if it is genes or because my father was extreamly abusive. it sucks D:

i know exactly what you mean about not knowing yourself. i was raised in a mormon church so when my grandfather died in the fifth grade i stopped going. i didn't have many friends and the few friends i did have left me in the 8th grade. it was an even bigger shocker when i noticed i didn't think girls were just pretty, i was actually attracted to them. so finding out i was gay gay instead of kinda gay was really hard for me. i too lost a lot of friends.

ugh i know addictions. i was addicted to pain medication because i was constantly getting sergery [sorry i'm an awful speller] so much so that i actually used to cut myself JUST to get the natural high. well that and because i was depressed. people didn't understand at all. it really just, sucked.

i'm sorry about all of that, but i'm glad you're thinking of it positivly. that's what everyone with a chronic illness needs to do, think positive. i'm sure you know how importiant iron and calcium is to your diet especially now, and caffene and soda could put you in more pain.
i just hope people you work with, school or job wise, know of this and help you with it. you could even apply for social security and get some moniez XD

Drat, another reason to quit coffee. Pity I wake up at five. Caffein makes it so much easier to get through the morning. (not to mention it keeps me from falling asleep in my piano class... heh heh...) At least soda is a non-issue, I have tummy trouble enough, thanks...

I unertsad abut beeign a huribel speeler. ;) I'm dyslexic as well as a bad speller, which doesn't help. Still, if I can cope with my severe ADHD and mild bi-polar disorder, I can certainly handle something as minor as dyslexia. I have a pocket dictionary that I keep near my laptop, something I learned from my mother (who also can't spell). You might want to think about trying it.

kagehikaru well i use firefox on my computer and it has auto spell check [an application i downloaded for it C:]
but now i'm on my mom's work computer so i just use internet explorer. D;

Krazy-kat
PCOS? GAD? i do NOT know these code names ahahaha.
paxil is becoming very popular, my friend takes it and doesn't feel any side effects.

I have Bi-polar, I was never able to explain it though more than what Jones said. :s
I also have concentration issues, I can't stay on task and bound from one project to the next without finishing the one before first. My mom's taking Psychology courses and now, instead of Bi-polar, she thinks I am schizophrenic. *sigh*

I take:
Risperidal
Concerta
Zoloft
and various others that I can't think of the name. D:

zoloft is an antidepressant

i know people with bipolar, if they take an anti depressant they go into a manic.
D:
if you were diagnosed bipolar then whoever gave you zoloft is just... wow.


and schiz? why?
i mean no offence to your mother butttt i mean i have taken psychology classes before but it doesn't mean i know everything. i think you should see a real doctor to ge that taken care of.