Chronic Health Issues

maggie_kb @ 12:36 pm: Journalist Looking For Rural Health Workers
My name is Maggie Koerth-Baker. I'm a journalist working with American Profile magazine on a story about chronic lung disease and outdoor air quality in small towns and rural areas. Please let me know if this is not an appropriate community to make this request in. I was hoping that there might be patients here who could point me to a skilled doctor they've worked with or medical professionals who have experience with chronic lung disease.

I'm trying to find a healthcare worker (nurse, doctor, or specialist) with experience in this area. Ideally, because part of what the magazine does is profiles, I'd like to find a healthcare worker who has some personal experience with lung health, either living in or growing up in a town plauged by chronic lung disease (like a mining community, for instance) or having dealt with lung health issues in their own family.

If you're interested or if you can point me in the direction who might be, please let me know. You can reach me by email at maggie (dot) koerth (at) gmail.com.

And many thanks!

adamant_turtle @ 09:35 am: In case anyone reading this happens to live in CT (or MA/RI/etc. and willing to drive) I'm starting a chronic illness support group for people in their twenties and thirties. Our introductory meeting will be held Saturday, July 26 at noon, and run probably around two hours.

I've gotten interest from people with all sorts of issues, but by far, it seems we'll have folks with autoimmune issues like lupus (including myself).

Anyways, if you're interested, or know someone else who might be, just comment here or message me.

(Sorry for x-posting, but I'm trying to spread the word to as many people as possible)

dreamwalker333 @ 07:49 pm: Yet another newbie lol
Greetings all
I'm Dreamwalker I've had fibromyalgia for over 20 years . I got it as a result of a motorcycle wreck in 1981 ... I also have only 36% of my heart that works . It took me over 12 years to get SSI but it was worth it . I'm also a mom of three grown kids and 2 grandkids with a third comeing in January . I spend a lot of my time online because it helps me to deal with the constant pain .
I'm looking forword to meeting everyone here .
There will be times when the pain is just tooooo bad and it may look as if I've left but I'll be back .

shadowshow @ 07:14 pm: Applying for Disability
For those who have applied for disability benefits while unable to work, how many months of your bank statements do you need to provide? Do they go over the past few months, or years? Thanks!

shadowshow @ 11:45 am: Just for Laughs...
I'm sure many of us have dealt with crazy medication trial-and-error. Check out this medication ad spoof (I know I can relate). It made me laugh out loud.

http://www.panexa.com/

thebabynancy @ 06:11 pm: From the "Itchy and Scratchy" Show:
*sigh*

I am suffering from Urticaria.

It presents on my neck and collar areas.

A major trigger appears to be stress, as well as seasonal, and environmental... however, there is a chance that it could be due to food. For that, I will be starting a supervised water fast on Monday for 14 days to see if it clears up on its own and therefore attributing it also to diet.

Then I will be re-introducing the food groups.

I am taking prescription strength diphenhydramine (cream and pills) 4 times a day... but it only helps so much.

Are there any natural remedies for this skin disorder?

Everything and anything would be appreciated.


:) Nancy

baratron @ 12:09 am: crossposted to various chronic health communities
I had an altercation yesterday with an old woman who wanted my seat on the bus. It wasn't that I was unwilling to give up my seat to her so much as that I couldn't understand why she was asking a person with a walking stick to move when there were healthy-looking teenagers sitting in front of me. She was arguing that she hadn't asked them because they were older than me, which I couldn't understand because they clearly weren't, and so we were going round in circles arguing instead of dealing with the problem. What I *should* have done was stand up for her, then badger the healthy-looking teenagers into moving for me. But I was tired & in pain & my brain wasn't functioning well. So she went to sit further back in the bus, where I didn't want to sit because I didn't feel capable of dealing with the steps.

I'm sure she went away thinking how utterly unreasonable "that young girl" was, and I felt guilty for the rest of the day - still do, actually. I decided that I should make some cards to hand out to people explaining that Yes, I Do Have A Disability. I thought I could make them by hand, but then I realised that probably lots of people would find them useful. It could be done with a script where you go to a website and click the buttons saying what the issues you have are, and choose the picture you want to go at the top of the card. (I want help with finding free-to-use symbols for various disabilities.) You could decide whether you wanted to declare Specific Named Disabilities, or simply explain the symptoms you have. Also you could decide if you wanted it large print so people with bad eyesight could see it, or small print so the cards don't take up much room.

So I've asked a friend who's written an online card-generating program if he'd be interested in writing a version of it for me. And when I have spoons, I'll put together some designs for the cards. I'm thinking there would only be at most 5 different card designs. The headline would say "Yes, I do need a seat on the bus" / "Please may I use your toilet?" / "I have an invisible disability" / "I have a medical condition". The IBS and ulcerative colitis charities have cards about toilet use, but they look horrible. The medical condition card would be something you could give people if you were not able to communicate, telling them what to do (e.g. if you were having an asthma attack, anxiety attack, or autism spectrum overstimulation problem). These things *do* exist but they're really nasty-looking and hard to customise.

So. Would you be interested in a card like this, and if so, what would you want it to say?

cfricksdance @ 01:25 pm: remote second opinions and medical advice?
Has anyone here had any experience getting an online or remote second opinion from a doctor, without actually seeing them?

sierranighttide @ 07:30 am: File a complaint against the ban and sole use of HFA inhalers
For everyone who has problems with the new HFA inhalers -- PLEASE file a complaint with the Food and Drug Administration (FDA): http://www.fda.gov/opacom/backgrounders/complain.html  

They really do take these complaints seriously, but only if everyone who has had problems files a complaint.  I have heard from several people who have problems and I am one of them. I cannot take the new inhalers and once December comes I have no idea what I will do. If everyone files a complaint with the FDA, the issue will be recognized. 

bluesuitcase @ 10:41 pm: UTI? 'A'TI?
Alright, so, when I urinate, it burns a little... I've never had a UTI and there is no way I have an STI. The thing is, although it's hard to localize, I feel the stinging sensation from my anus... has anyone ever experienced this? Is there anything I can eat/take/do to make its mild-but-annoying presence disappear? Should I be concerned or go to my college's clinic? Thanks for any advice!!!

submissivecunt @ 08:17 pm: Colitis and Chronic Pain

New to Live Journal, I am a avid blog a holic whose life has been taken away and put in the grips of chronic pain. I am seeking friends, I am seeking anyone, anyone who will listen, anyone who understands and knows what I face daily, just someone who will accept me. I’m a 25 year old female who in 2004 was diagnosed with “colitis” an illness I had no prior knowledge of or even heard the name prior to this. Since 2004 it has worsened and to keep this post short I will try to explain the best I can, I sit here in tears because I know how much this illness has taken away from me.

 

I knew something was wrong in early 2004, like usual I ignored the signs of my unhealthy body. In Feb. 2004 my mother was diagnosed with colon cancer (she recovered and is now in remission). I ignored the pain I was in and ignored the bathroom issues because my mothers well being was the only thing I could think of, days without sleep, trying to juggle at the same time. By July 2004 I knew that I needed to go to in and get it checked out, I was in so much pain and went so many days without eating (because I no longer could) I passed out and was sent to the ER. Three trips later to the ER with the same issues and being admitted (the last time) they finally addressed my problems as being “colitis”. I went on the routine of diet and meds, tests, and colonoscopy’s to find the ulcers were 18+ inches up my colon and covered the rectum, the doctors were baffled they stated saying they had never seen a case as bad as mine.  On the meds for nearly 2 years (up to 2006) I just kept getting worse, I was unresponsive to all the medications and combinations of them. Around this time I was having grave pain as well as the issues that stems from colitis, I was going to the ER once to twice per week and most of the time I was very ill, they always pumped me full of morphine and sent me home with a bandaid treatment because they couldn’t address my issues, not knowing why I wasn’t responding to the medications. When I was removed late 06 from all the meds for the colitis the ER trips sort of stopped, the steroids and other meds were causing worse stain on my body. I sit now before you riddled with the effects of chronic pain and depression. The ulcers ate through all the muscle tissues in my colon causing them to collapse which in return caused a rectal prolapsed (the rectum coming out of the body). Not just at the times I go to the bathroom (and with colitis it is often I go upwards to 50 times per day on flared ups) it happens when I walk, it happens so much and causes grave pain, pain no one could imagine it doesn’t go away, pain I wouldn’t want anyone to come close to imagining. Since 04 I have been through 18 doctors, surgeons, and specialists all of which look at me and basically say “what do you want us to do”. They before talked of surgeries, reconstruction and colostomy now in 2008 they say surgery is not an option for me anymore my body is way to unhealthy to come through a major surgery. My immune system due to the colitis is lowered, I get staph infections, and other issues which lead them to basically say if we do this you will have a tripled risk of death. I don’t want to die, but I don’t want to live in this pain, each month the illness and pain takes away so much I try not to let it but I have lost friends, I have lost my sense of who I really am, I had to quit my job, I had to quit college my medical school dreams all never happened as I had to turn my scholarship down knowing I can’t do it. I used to have a great young life, I was a party girl with friends I would go out shopping, I would hang out with my family I was active. Now I don’t even leave my house my life now is colitis, chronic pain, depression, fear, and panic attacks.

 

I am seeking friends, friends who know what I am going through. Like I said I’m new to groups on LJ and LJ itself I blog as an escape, my friend told me to sign up for the LJ community. I would just like to meet those who know how is is to suffer from colitis and illnesses like chronic pain and be accepted for my illness. Please feel free to add me, take a look at my blogs, email back and forth, I am extending a hand to anyone who wants to add me as a friend and communicate because in all reality I need to meet others who understand.

 

Thanks.

shadowshow @ 12:48 pm: Post-Viral Myalgia
Since a bad flu in January, it seems that my muscles have never recovered. They are always tight and achy (it's had slightly better and worse periods). I've had chronic health trouble and I'm hoping I don't have a new autoimmune disease on my hands!

I've tried heat, mild exercise, stretches, supplements (calcium, magnesium, vitamin D, amino acids) etc. Any other suggestions?

Has anyone had post-viral myalgia like this that lasted a while and eventually went away? THANKS!

(Sorry for slight X-posting...I'm a bit nervous)

metis2be @ 04:51 am: I had a really bad case of tendonitis in my wrists over the summer. It got to the point where I'd have a little cup of water sitting in front of me and I'd debate whether my level of thirst was enough to justify the pain that would be involved in picking it up. Since the fall I've been getting better thanks to physical therapy I was assigned to do, but I still have bad days such as during finals when I simply had to write an essay I was out of commission the next day. I've been lucky to find a set of jobs that don't involve using hands a lot, but once I graduate I'm going to need to be healthy enough to hold down a job, so I really got to kick it up with the physical therapy.

http://www.amazon.com/gp/registry/registry.html?ie=UTF8&type=wishlist&id=PTJGQNUS99CC

If anyone's ever used one of these, I'd love to get a little feedback since amazon seems to be greatly lacking. I'm a 21 year old female who would like to have good hand strength so if you've used something like the theraputty can you recommend a firmness that would be ideal? I'm thinking of getting that red thing with strings, and possibly either one of those eggs for on-the-go since they seem like they aren't messy, or the theraputty since I have little hands and would like something of a comfortable size. Any advice you can give me is greatly desired, since it's been the better part of a year and the frustration of not being able to do simple things like crochet anymore is really getting to me.

Oh and uh... first post. Hello all!

rainbow_goddess @ 09:42 pm: "Nobody needs medication"
So there's this person who belongs to a mailing list that I also belong to, who believes, basically, that people don't actually need medication. Other than people who have diabetes or AIDS, he says, people can get along just fine without drugs. Oh sure, he says, some people will be miserable and feel lousy, but they will be outnumbered by the people who will suddenly feel so much better because they are no longer being made sick by all the medications they have been taking.

Of course, people who are depressed don't need antidepressants. Hell, I sure wish I didn't. I'd love to stop taking the damn things. But when I don't take them, I'm the one who is miserable. I get into arguments. I start thinking that I'm useless. I figure it's not much use going to work every day, because I'm lousy at my job and they'll probably fire me before long.

And I take medications for acid reflux disease. I've tried going without them, too, but when I do that, I cough every time I eat something. And it's not just a little cough that is mildly annoying but goes away. It's a full-blown asthma attack that doubles me over. And that's not to mention the constant, chronic burning in my chest. I've tried over the counter drugs, every single one on the market. But they don't do me any good.

This brings me to asthma. Another medication I've tried going without. Not being able to breathe, though, makes me start taking it again in a hurry. But I guess maybe that's imaginary? I only think I can't breathe.

emrelove @ 05:25 pm: Went to a new urologist
Hey guys, I posted awhile back about the pain I'm always having in my right flank area, and someone had mentioned that it might be loin pain hematuria. No Doctor would listen to me at all. They rolled their eyes and said that i shouldn't "believe everything you read on the internet".

Anyway, I managed to get an appointment with a Urologist who was just great.

I didn't even get a chance to talk about Loin Pain Hematuria because of what he found while looking through my ct-scans that everyone had said showed nothing out of the ordinary.

On the contrary, apparently my bladder is 2-3 times larger then the average bladder. And now I'm suffering symptoms of bladder cancer. He's running a ton of tests, and set me up with physical therapy to learn how to relax my pelvic area to try and reduce the size of my bladder.

Has anyone here had anything similar?

He didn't give me anything for the pain in my flank area, but I'll know on monday or tuesday if it's cancer.

My sister said that the enlarged bladder could be pushing against my other organs and causing the pain I keep having, that intensifies when I have a bladder infection, and I get them almost monthly.

A couple of my friends and my sister think that if it is cancer, or something like that, that has gotten worse over time I should see the hospital for malpractice, because the signs were completely ignored, and they basically just told me that I was a pill-seeker.

Just wondering if anyone has ever heard of or suffered anything like this, and if you guys have any advice. I'm kinda freaked out. I'm 23, and had no issues with anything before I became pregnant at 19, and my body has all gone to hell since then and I've had chronic pain from my pregnancy onward.

Sorry this is so long, thanks for any advice you can give!!

shadowshow @ 04:20 pm: Muscle Atrophy
I'm having a lot of trouble with bad muscle atrophy/weakness/aches due to years of chronic illness. I'm being diligent about protein intake and proper nutrients to help build muscle, but need to VERY gently start building strength.

Has anyone dealt with atrophy? What specific exercises helped you? I'd really appreciate any advice (I can't afford a personal trainer due to medical bills, so I'm on my own with this). Thanks!

mizzbeehive1963 @ 11:36 pm: So yeah, not the best way to start the quarter: I've been sick since Sunday night and have an alarmingly rapidly growing (and increasingly painful...) cyst on my lower back and "chills" as the doctor calls them (if by chills, you mean feeling like I'm freezing my ass off, then yes, chills), so I went in to the walk-in clinic last night. So I had a temp of 102, which explains "the chills" I guess. I suppose one of my first thoughts was that maybe my pilonidal cyst came back (like the one I had Dec. 2006). So the doc made a little incision to see if it would drain, and some stuff did come out, but not much, and he guessed that with what did come out and the incredibly high temp that I might have MRSA. Which is pretty damn scary if it is what I have since I've got a weakened immune system because of the medications I am on. And if this doesn't get resolved soon, I might have to skip my treatment for my arthritis, which also freaks me out. Oh, and he gave me two different antibiotics which I guess when working together, they usually beat the infection. Then I had an appointment with my primary care doc this afternoon that lasted almost two hours, good times! He changed the dressing over the incision, checked the preliminary results from the blood tests they did last night, which point to but don't confirm MRSA, and had me get more blood work done because I had a temp of 99, which might or might not mean that the infection entered my blood stream and started to move to other areas of my body... So at this point I can't go back to school until some time early next week, AT THE EARLIEST. So yeah, missing the first week and a half of the quarter is not the best foot to start out on.

Anyone else have or have had MRSA?

cross-posted to chronicstudents, menzhealth, and my personal journal

chelsea_ana_ox @ 10:49 am: Hey!
I have set up a forum for people with ME/CFS etc...

http://sleepingbeauty.freeforums.org/index.php

I would really appreciate it if some fo you would join!

Its is a new forum so currently has NO members, But once it's up and and running with plenty of members it will be a great forum for support!
So please join, tell anyone else you think may be intrested in joining.
The forum is not only for people with me/cfs but for people with friends or family suffering from it.I thought by doing this it would be a good way for people to explain to them how it feels, as i know from personal experiance, i know some people arn't very understanding when it comes to their loved ones suffering with ME/CFS, not to be cruel, just becasue they don't understand the illnes.


So anyway Please Join!

http://sleepingbeauty.freeforums.org/index.php


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