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Wednesday, November 6th, 2013

Posted by:gunkylungs.
Time:12:16 am.
Hello! I thought this would be a nice group to join because I have two Lung Diseases and Reactive Arthritis!
Comments: Read 1 orAdd Your Own.

Monday, March 28th, 2011

Subject:Chronic and Creative?
Posted by:silvershe_wolf.
Time:2:42 pm.
I'm a CFS/ME sufferer who has just created a community for sufferers of chronic illness' to share their creative works.

If anyone is interested in joining and sharing their work, the com is here: chronic_creator 

(Promotional post approved by mod dontcryforme)
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Monday, March 7th, 2011

Subject:Tell me your stories and let me tell the world...
Posted by:shanynrose.
Time:5:25 pm.
x posted to two other pain or invisible disease related communities


I've been a member of this group for years, though I've only posted a few times. I watch, I read, I know what most of us go through...though no two of us have exactly the same issues.
I met and shared lunch with an awesome person from the list...you know who you are, I have a car with a heater now, and I no longer pass out over dinner - ditched THAT med. Funny story, but I'm sure I scared the life out of said person. At least I didn't kill you (HUGS!)

My Qualifications, such as they are...Collapse )
About six months ago I was sitting with my daughter at the hospital. This is not at all unusual (she's had 11 hospitalizations.) She has fibro and chronic pancreatitis, possible diabetes (should find out tomorrow,) seizures, and more. She used to be an apprentice for a regional ballet company before she got sick. She has finally learned to manage her symptoms (it's very difficult and timing is CRUCIAL) and has started teaching ballet and tap; even the community center classes make her happy. She goes to the gym with me now to do yoga but still takes her pain meds. Anyway, when I got the idea she was lying there zonked on fentanyl - allergic to all other IV pain meds, can you believe it? and I just started writing on the "Patient Bill of Rights." I had a sudden picture in my head of a line of different beds - sheepskin, space-age, free from Craigslist cuz I'm poor, the couch, and so on, interspersed with computer desks lined across a stage...each holding a person with fibro or another invisible disease. Above the stage is a screen where we can see the insomniacs messaging each other, and where we'll see the right and wrong answers from "Doctor Google." Thus was born either "Fibro, the Musical!" or "Invisible," if I decide to include other issues. Songs so far include "My Bed," which is about getting up in the morning or not, "Doctor Google/Don't Look it Up on the Internet" - jazz and barbershop mixed, "Jones," where the fibromites or others with invisible disabilities talk about what they need to get through a day, or an hour. Narcotics. Kittens. Cobra venom (look that one up - it's real.) It is sad, it is funny, it is GOING places. And it will not have a nifty wrapped up ending because fibro...doesn't. There will be an inspirational, remember we are all around you type musical finish, but again...no closed door. No all happy happy.

The characters are ALL of us...and I'm asking for YOUR stories.Collapse )
Email me at FibroLifeStories@gmail.com . I promise EVERYTHING will be read and replied to, even if it's a short reply. Making a RELEVANT musical that features new media (but not expensive new media) is going to appeal to many. EVERYONE, at least in the US, knows someone who has fibro.

And feel free, please, to ask me about my story and more of my daughter's. I'm allowed to share. MY jones (meds, and now the gym,) MY bed (a crummy couch) and more. When it's done, and the themes and songs are meshing fast now, I will share it with everyone who has shared with me.

Gentle hugs to all. Please help me grow this. At the very least, I can post video to YouTube. I am THAT confident.

There - best I can do for now. I look forward to hearing from all y'all who want to be a part of something awesome, and something IMPORTANT that needs to be out there.


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Tuesday, March 1st, 2011

Posted by:sweetjezebel.
Time:10:38 pm.
Hey friends with hidden diseases like mine, I have a HUGE favor to ask! This post DOES pertain to hidden disease, because I am a girl with lupus who has overcome that obstacle & built my body up/brought my pain level down with exercise and good nutrition. You'll be able to read my story when you follow the link. First, read on... I am in this contest to be on the cover of Fitness magazine... I swear this is for real. You can write me a personal message first to verify. Anyway, just in the last day I've gone from 11th to 5th place! I really want to win this & become a famous fitness model. It's my dream! Will you please take a second to vote for me and then maybe repost it on your Facebooks and ask your friends to vote & repost? Once again, I swear this is NOT a hack or scam. You'll see the link is legit to Fitness magazine. Please help? I only have 5 days left to beat out the competition for 1st place! Thanks :)

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Monday, February 28th, 2011

Subject:boston doctors
Posted by:burningembers6.
Time:4:06 pm.
Are there any Boston doctors that specialize in the care of CFS?My neuro told me to go back to a rhuem for CFS care.But the rhuem's office told me to call the dept of infectious disease.
Comments: Add Your Own.

Friday, February 11th, 2011

Posted by:khlela.
Time:1:59 pm.
Hey everyone. I have been part of this community for a long time now, joined years ago but haven't posted in quite some time.

I'm having a really hard time right now. My husband and me want kids so much right now. We went to an appointment in December to see if my heart is getting better and found out that in fact its been getting worse. Most of the time I feel fine I know that no one would believe how sick I really am just by seeing me and it makes it so much harder. I'm 25, I want to have a baby, it's all I have ever wanted.

I have Idiopathic Dilated Cardiomyopathy and Congestive Heart Failure. My EF is around 25%. It's dropped about 10% in the last 3 years (it had gone UP from 7% the 4 years previous to that). If I continue to decline I don't know if I will have more than a few years left. I don't even know how to handle this. Not only can I not have a normal life but now I may not have much of a life at all for much longer.

To add to it, with all this cold weather I have needed to use my handicap parking pass more. I try to only use it when I need it but it is so hard to breath the cold air. Of course as people see this 25 year old hop out of her car I end up just getting stares and glares, smirks and whispers. I hate it. Why do people always assume we are try to pull a fast one? Why can't they just realize there are so many of us fighting every day?

Sorry for such a down post, I just needed to vent and it sure doesn't feel like people really understand unless they have been there too like you guys. Thanks for being here.
Comments: Read 2 orAdd Your Own.

Friday, February 4th, 2011

Posted by:songofaugust.
Time:8:43 pm.
I have a disease called supraventricular tachycardia. I've had it since I was a kid. I hate when I feel like my heart is going to explode. My heart sometimes beats up to 200 beats per minute. I feel so helpless and out of control when it happens. Not very many people have heard of my disease. I've been to the hospital too many times to count and I've had to declare bankruptcy because of all of the medical bills. Does anyone here have SVT?
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Wednesday, May 26th, 2010

Subject:partial seizure?
Posted by:her_stratagem.
Time:2:16 pm.
Recently I've been having these "episodes" that mimic simple and complex partial seizures. I've already had an MRI and an EEG and am waiting on the results. But I've been researching these types of seizures and the thing is, when I experience these "episodes", it goes on for about 20 minutes, whereas normal partial seizures only last a few minutes at most. I never fall over and actually "seize" or anything.

It always starts with nausea and hypersalivation, and then suddenly, things start getting "weird" and vivid and really intense.  Soon, I lose my ability to speak. Technically, I can still talk, but it feels as though my tongue is swollen in my mouth and it's really difficult to get words out. I will stare at things for long periods of time and experience some deja vu as well as jamais vu, but mostly it just seems like I'm "tripping", as my room mate says. I will also twitch my head to the side, grind my jaw, wring my wrists, and just start crying for no reason. After, I always seem to remember everything (which is not suggestive of complex/partial) but I suppose there could be things I forgot. I am usually very tired after and have a headache.  The first one occured about 6 months ago and for the past 2 months they have been increasing. I have lost track of how many of these I've actually had. I have experienced 2 in public, which has been very strange and scary. 

I guess I just wanted to ask anyone if they have ever heard of something like this lasting this long, or experience anything like this before.
Comments: Read 4 orAdd Your Own.

Wednesday, February 3rd, 2010

Subject:Oh no!
Posted by:climbfall78.
Time:10:24 pm.
I'm going to be 32 next month & I have another crisis!

Anyone here had an EEG? I have to get one at the end of the week. My aunt (and she's a retired nurse, so I think I can trust her) told me it's kinda like an EKG for the brain.

My neurologist thinks I may have a form of epilepsy or something. Lately I've been getting horrible dizzy spells and I've been seeing things on the page (computer or paper) backwards! I'm also very sensitive to loud noise (as I found out when my nephew played his iPod really loud in the car once). This is why I need to get the EEG. Frankly I'm terrified.

So yeah, anyone here know what I'm going through?
Comments: Read 13 orAdd Your Own.

Monday, January 18th, 2010

Subject:addisons disease?
Posted by:burningembers6.
Time:3:09 pm.
Does anyone in here have Addisons disease or hypo pituitary?Is there a community on LJ specifically for these diseases?Can they be cause by the immune system attacking them?Does everyone with Addisons get skin discoloration?Can you still have a normal cortisol blood test and still have Addisons?What blood tests did you have to diagnose your disease?
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Thursday, November 26th, 2009

Posted by:flamegirl_kitty.
Time:6:09 am.

Angela Hartlin's memoir, FOREVER MARKED: A Dermatillomania Diary has finally been released! Please join her Facebook Fan page to spread word about this skin picking disorder along with her experiences with it.

People with this disorder have traits of Body Dysmorphic Disorder and usually suffer from depression. It is an Impulse Control Disorder that is fueled by high levels of anxiety. The first few pages can be previewed at the Lulu.com site, which includes a better definition of Dermatillomania.

Even if you do not have Facebook, the prices are listed there for Canadian, American, and International buyers. If you do, please spread the word of the fan page to everyone on your friend's list, even if you have to tell them that you're spreading the word for a friend! We need to raise awareness about this silent disorder and help break the stigma on mental health in general. You never know who is suffering in isolation from having this condition.

Please e-mail forever.markedATyahoo.ca if you want to purchase from Angela directly; she offers a lower shipping price than Lulu.com does. Include the country that you live in and she can send you a quote. She ships the day she gets a payment (or the day after), then sends an e-mail to confirm that it was sent.

Thank you. <3


Thursday, August 20th, 2009

Subject:I need some insight.
Posted by:1nsomniac_kat.
Time:1:47 pm.

Hey, I'm 16 and for the past couple of years I've been experiencing weird 'episodes.' What happens is that my eyes will involuntarily yet rapidly move to the right and i will hear a buzzing almost like a computer monitor in my brain. During these episodes I get extremely freaked - I'm not easy to scare - and I have to sit down because the world feels like it's spinning and I loose my already horrible balance. When the episodes are done I feel perfectly fines besides spooked and dizzy. Asides form the episodes I suffer from PCOS, I've noticed that I have been twitching more recently, I have a very heard time falling asleep (it takes several hours) but when I do I sleep for about 12 and I recently started to have anxiety attacks. I don't know what to think about the 'episodes' because although everyone else dismisses it as being my PCOS, I know for a fact that it is not a PCOS symptom. It occurs rarely (sometimes every few months to a few days apart).

If anyone has any insight please help shed some light on it. I'm getting quite fed up with it and more then anything it is starting to freak me out a lot.

Thank you.

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Monday, August 17th, 2009

Posted by:frozen_fields.
Time:11:01 am.
has anyone here tried it?
Comments: Read 1 orAdd Your Own.

Sunday, August 16th, 2009

Subject:Any idea what this could be?
Posted by:tortugaviejo.
Time:3:11 am.
I've made an appointment already for next week, but I wanted to see if anyone out there might know what I may have, if it's one or various problems to look out for. This might be a lot, so I'm sorry if it takes up a lot of space on your friends/community viewing page. I'm just trying to get out as much info as I know. Also, since it might help, I'm not on any kind of medication or do any kinds of drugs, and I don't drink. So none of this should be a side-effect from any of those things.

In mid-2003, I was laying in bed trying to go to sleep. After laying there for about 20 minutes, I suddenly arched up, with my feet and upper back on the bed. I couldn't hear anything out of my right ear, and in my left, I heard a loud ringing (think what Danny hears when he shines in The Shining). There was a jolt that went up and down my spine as well. I stayed in this position for what felt like 10 minutes, then my hearing returned to normal, and I fell back to the bed. This continued on and off for 2 years before it stopped. But after that incident, at random times in the day, I'd get the feeling that I was waking up, even when I wasn't tired at all. My body would feel light and it'd seem like my eyes were rolling in the back of my head, but I was completely aware of everything and fully awake already.

But since then, there have been other things that may or may not be because of that. I have very bad tremors and have a hard time writing even half a page of something before needing to rest. I've pretty much quit drawing as well. I can't walk in a straight line for more than a couple steps, and usually have to make an effort to do so. Sometimes one side of my face will go completely numb. Sometimes when just sitting at the computer or watching a movie, a leg or arm will jerk outward as if I'm hitting something.

On top of this, in the last 2 years, I've started to get double vision, even with my glasses on, and occassionally see spots or moving shadows when nothing's there. And more recently, my ankles (one or the other, often switching) will burn for no reason, causing a lot of pain when I walk. But the main thing that concerned me of all this started probably around March of this year. I'd start to bleed from the mouth while sleeping, and wake up every hour or so coughing up blood. It would only happen when I sleep, never while awake. One night after I took a nap when this happened, my daughter wanted to go to the hot tub with me and my wife. I wasn't feeling good enough for it, but went. After a couple of minutes of sitting in there, I felt like I was floating upward or even waking up- the same feeling I used to get after the first night I had any problems. I really don't know of any other way to describe that feeling other than waking up or flying, and I'd have to keep telling myself to stay where I am.

Despite all this, I exercise every day and eat well. What I find weird is that I have trouble writing and drawing, but I can do 200+ push ups and sit ups a night without any trouble. That can't be a cause of this (though it may not help either) since I only started doing a regular routine about a year ago.

Does anyone have a clue what I might have? Or am I just one big mess?
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Monday, July 6th, 2009

Subject:I don't even know what's wrong anymore.
Posted by:kyatto.
Time:2:27 am.
Mood: sad.
Finally, a community where perhaps someone could understand what I deal with?

This rant stems from the fact that recently, my roommate (who I am by no means friendly with, especially now) told me off, stating that she believes I am making up all of my problems up because I "look fine to her". Yes. She's one of those people who think things can only be wrong if they look wrong on the outside. And all of this came up because I kept forgetting to wipe down a counter!

This all started when I was a kid, really. I hated other children. Why? Because I felt more grown up than them. At five I was convinced that all the people that surrounded me were stupid. Sure, I couldn't do advanced algebra, but I could already read chapter books. I could see things, do things, and offer decent opinions of them. I was aware of the outside world and simple childhood pleasures bored me. The teachers didn't know what to do other than try to get me to play or leave me alone.

Then in Elementary, once kids started to get a clue, they all noticed how odd I was. That's when the teasing start. My verbal retorts weren't absorbed due to their lack of understanding so my mind's only other option was violence. They brought out the teasing and snide remarks, I came back at them with punches, kicks, scratches, and bites. For a long time I had lunch in the Vice Principal's office because they feared I was too violent to play outside. When I was allowed outside, I would play in my imaginary world all by myself. Once or twice, a few other socially awkward imaginative children would join in my games, but eventually it grew too weird even for them.

In middle school I developed a fear of people. A strong one. I was at a loss as to how to properly interact with other humans. Other than a few girls I managed to befriend over a summer, I was practically mute at school. (I could still talk to my parents.) The more people stared and whispered and remarked, the more fearful I became. I was already put on medication to stop the violent urges. In turn it only made me go deeper into my shell. But at the time, my mother thought I was just ADD.

Then in high school the pain came. I got awful headaches. Sometimes so bad, voices came with them. The pain so blinding I'd hear a voice telling me to smash my head open so I could end it all. I would hallucinate during the onsets of pain. See things. I had been hospitalized several times, put on all kinds of medications, and could no longer attend regular high school. Sometimes the pain was so bad it seemed like my nervous system would shut down. Twice I had been nearly paralyzed and unable to move out of bed. Seizures came every so often. The doctor said I had migraines. Everything else was to require further study. ADD + migraines? *Great*.

I was 17 when my memory began betraying me. I could remember the odd detail or things that happened in my past. But the every day things started to slip by me. Take in the mail, clean up something, eat. I only remembered to use the restroom because it hurt if I didn't. I'd want to shower one minute but then the next I'd forget to. It'd be weeks without bathing, days without food. Soon people realized something was amiss and would start prodding me, reminding me. It was annoying, but it worked.

Then the tolerance came. What was agonizing pain for another was almost pleasurable for me. Though I remembered pain from my childhood, once something pailful happened, nine times out of ten it was almost nothing. I got piercings (really enjoyed the ear cartilage), a tattoo (like a hot massage), I stopped feeling the injections at the hospital... I even started cutting myself because the pain felt good. I got third degree burns on my feet and barely felt them (this happened a month ago). I broke my ankle years ago and it was only an inconveniencing ache. I was more concerned about not being able to move it.

Voices started telling me to do things. Mostly to hurt myself. But the voices protected me. If someone hurt me, the voices so desperately wanted me to hurt them. They still do. But it seems some of my medication meant to control the headpain is also helping me keep them from fully controlling me. Which is good. I don't want to know what would happen if they were to have their way.

My sleep fluctuates. When I was younger I could stay up for days on end. Never sleep. Or sleep very little. It's still the same way. But when I do sleep, I CANNOT BE AWAKENED by anyone other than myself, or else the pain comes. (College is very miserable because of inconsiderate roommate. I wake up a lot in pain.)

Cue college. When I have sex with a significant other I have to have them hurt me because I cannot feel anything else. I haven't had any true happiness in years (I pretend to). I feel nothing but sadness and the occasional anger. The pain comes and goes, sometimes unbearable. I sleep with a waterbottle in case I get paralyzed so I don't dehydrate. (After all, my mother isn't around to make sure I don't die.) It takes a friend I made to get me to remember to eat, or else I'd nearly starve to death. (Pain is my reminder). (Said friend always vouches for this. She even jokes to other friends about how if she didn't remind me to eat, I wouldn't move.) The urge to kill myself has spiked and waned. (I thank my lucky stars for this friend every day. She is like my crutch. As is The Boy who I wish so desperately would be someone who can make the voices leave and ease m pain.) I still get the urges to hurt myself for pleasure. I still cannot remember mundane tasks. (I only remember my homework because that is a big part of why I am at college and FRIEND REMINDS ME.) It's just very miserable.

Even though I was hospitalized back in October after running 5 blocks to said hospital in screaming pain, Roommate doesn't believe me. Even though I buy food and it's hardly ever consumed. Even though she hardly sees me because my friend has made it her mission to keep an eye on me. Even though I walk by with cuts and scars. Because I can walk. I can talk. I get dressed and go to classes. I'm "fine". And I'm the worst person ever for not wiping down a counter. Right.

And for general reference, even now I am only diagnosed with migraines and ADD. Thought my neurologist and psychiatrist are going through my old records and are starting to think Autism. A second opinion also suggested the beginning onset of Schizophrenia (dear god I hope not). I hope I somehow get better. Roadblocks like my witch of a roommate aren't helping. *sigh*
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Wednesday, May 20th, 2009

Subject:Blood test help:adrenal disorder?
Posted by:burningembers6.
Time:11:13 pm.

Hi!What should my Dr. be testing me for to diagnose an adrenal disorder?I've had a whole slew of symptoms that have been ruining my life over the past 6 months.Last blood test I got leads me to believe these issues might be endocrinological..I already know I have  thyroid dysfunction.Seeing that my vitamin D is low,Dhea is high,tiny amount of blood in urine over the past few years,super increased urination at night and thirst,etc..........leads me to believe I might have a kidney/adrenal issue or PCOS.Maybe everything is from an other endocrinological issue or autoimmue disease.Any suggestions on anything else to get tested?Is there an LJ group geared more toward this?Thanks

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Tuesday, April 28th, 2009

Subject:Love is the Cure!
Posted by:loveisthecure5.
Time:11:37 pm.
Hey everyone,

I am Carla, Marketing Coordinator for a new project called Love is the Cure (LITC).

LITC with slogan

Created in April of 2009, LITC is a division of the NHBPDA. We are an authentic brand developed by borderlines for borderlines. Our mission is to help people with borderline personality disorder (BPD) help themselves by providing them with the support and resources they need to do so.

We are in the process of designing our official webpage: www.loveisthecure.net

There are some things you can do in the meantime to get connected with us:
Follow us on Twitter!
Become our fan on Facebook!
Become our friend on Myspace!

Also, FOR BORDERLINES ONLY please help us by completing a simple survey. This survey is completely anonymous. It will give us a better understanding of how we can better serve you with our new site.

Please click here to complete the survey!

Thank you so much!

<3 Yourself. <3 People. <3 Life.
Comments: Read 2 orAdd Your Own.

Posted by:zapsoekis.
Time:1:13 pm.
Does anyone here get Remicade infusions for inflamation? If so, do you experience flushing, heart palpitations, shakiness, or teeth chattering? And if so, how do you deal? Thanks!
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Friday, April 24th, 2009

Subject:Photosensitive Community
Posted by:animelily.
Time:6:25 pm.
Mood: hopeful.
I hope this isn't breaking any rules, but I'd love to welcome any new members to the Photosensitive Community!

If you're sun sensitive or sun sensible feel free to post anything you've found to be helpful in coping with the sun: sun screens, clothing, activities, or just plain bitch about how your friends went on that vacation to Aruba.

Over at sun_be_gone
Comments: Add Your Own.

Thursday, April 2nd, 2009

Subject:LGBT Autism Resources
Posted by:queerunity.
Time:1:14 pm.
In honor of Autism Awareness Day, a posting with links and videos for lesbian, gay, bisexual, transgender, queer intersexual, asexual and queer allied autistic people the "double oppressed" minority.
Comments: Add Your Own.

LiveJournal for Invisible Diseases.

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