The Chronically Ill support Group

JennyMominRI

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Joined
Jan 13, 2005
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shugarDrawers thread got me thinking.There are a lot of us here with chronic illnesses..Many of us just need a place to vent..To share experiences.>All illnesses are diffeent but I think the emotions,the anguish,the fear they cause are universal. So come hear to laugh,to cry or just to support each other.
Most of you know my story.I'm 35 and nearly a 15 year survivor of AIDS.I also have Cardiomyopathy ,which is most likely AIDS related and I had a mini stroke,or a full fledged one. They never did make up their minds.
SO tell me about yourself?
 
I just wanted to add that I think anyone should be able to post here,not just the chronically ill.
 
Great thread idea Jenny. I've always admired your courage. I'm sure I'm low on the totem pole of importance here, compared to other illnesses, but I can relate somewhat to being chronically ill. I started taking meds to dissolve gall bladder stones in the early nineties. The meds turned out to be very toxic and have since been banned by the FDA. Well, in a nutshell, they didn't help my gall stones but they did destroy my pancreas. I'm on digestive meds to take the place of the pancreas and am on pain meds and will be for the rest of my life. I'm at very increased risk for pancreatic cancer now and also diabetes because my body has no control on how much insulin my pancreas will or will not spit out. Eating anything solid causes pain and discomfort but I've learned to live with it and I know my limits. The meds help me live a more or less normal life but there is always that nagging thought the meds will stop working and the chronic pain does get on my nerves sometimes, but I thank God because I know I am so much better off than others less fortunate than me. I'll always be happy to give words of support to anyone who needs them. :goodvibes

Edited to add; I know people will look at my tags and say huh? With my meds I can basically eat most anything I want. It hurts, but I can do it! And Doc says as long as I stay under a certain weight, my sugar count seems to be steady.
 
eclectics said:
Great thread idea Jenny. I've always admired your courage. I'm sure I'm low on the totem pole of importance here, compared to other illnesses, but I can relate somewhat to being chronically ill. I started taking meds to dissolve gall bladder stones in the early nineties. The meds turned out to be very toxic and have since been banned by the FDA. Well, in a nutshell, they didn't help my gall stones but they did destroy my pancreas. I'm on digestive meds to take the place of the pancreas and am on pain meds and will be for the rest of my life. I'm at very increased risk for pancreatic cancer now and also diabetes because my body has no control on how much insulin my pancreas will or will not spit out. Eating anything solid causes pain and discomfort but I've learned to live with it and I know my limits. The meds help me live a more or less normal life but there is always that nagging thought the meds will stop working and the chronic pain does get on my nerves sometimes, but I thank God because I know I am so much better off than others less fortunate than me. I'll always be happy to give words of support to anyone who needs them. :goodvibes
Wow that's rotten and it seems to me that you have to deal with your illness much more,on a day today basis than I do.. I take a cople pills and go about my business..Sometimes my hands hurt.. I haven't been *sick* in more than 3 yeas. So who's to say who is higher up on the totem pole
That's just it,everyones illness is serios in it's own way..They all stink
I'm at high risck for pancreatitus? ...It can be caused by the anti-hiv meds..
I don't know if I could handle chronic pain. I've always thought that when it came down to it,if I got really sick and in a lot of pain,I couldn't take it
 

JennyMominRI said:
Wow that's rotten and it seems to me that you have to deal with your illness much more,on a day today basis than I do.. I take a cople pills and go about my business..Sometimes my hands hurt.. I haven't been *sick* in more than 3 yeas. So who's to say who is higher up on the totem pole
That's just it,everyones illness is serios in it's own way..They all stink
I'm at high risck for pancreatitus? ...It can be caused by the anti-hiv meds..
I don't know if I could handle chronic pain. I've always thought that when it came down to it,if I got really sick and in a lot of pain,I couldn't take it

It's funny but your body does get used to it somehow. I don't know how I would handle really debilitating pain on a daily basis though. You read horror stories about people that can't even get out of bed. I feel so bad for them. The only times I can't handle it on my own is when I develop pancreatic cysts. Then it's off to the hospital and Demerol shots! Thank God I haven't had any for a few years.
 
First of all :grouphug: to you all.

Mine is nothing as serious as you guys but I have Fibromyalgia and possibly Lupus. The doctors can't seem to make up their minds yet about the Lupus. Basically they tell me that at this point the meds to treat it will do more damage than good.

There isn't a day that goes by that I'm not in extreme pain. I know some people around me get tired of hearing about it so I usually keep it to myself. When I had my gall bladder removed the doctor was rather shocked that I had lived with the severe pain from the stones for so long. Guess I'm used to being in pain. When something doesn't hurt is when I notice!

Like I said, mine isn't as serious as the others here but since I'm hurting and dealing with a cold again I thought I would whine a little more. My lungs are small and very sensitive so when I get a cold it usually goes to bronchitis. Ugh! Last year bronchitis wasn't enough so I had to get pneumonia too. UGH! I'm ready for a break here!!!

Again :grouphug: to everyone!
 
chell said:
First of all :grouphug: to you all.

Mine is nothing as serious as you guys but I have Fibromyalgia and possibly Lupus. The doctors can't seem to make up their minds yet about the Lupus. Basically they tell me that at this point the meds to treat it will do more damage than good.

There isn't a day that goes by that I'm not in extreme pain. I know some people around me get tired of hearing about it so I usually keep it to myself. When I had my gall bladder removed the doctor was rather shocked that I had lived with the severe pain from the stones for so long. Guess I'm used to being in pain. When something doesn't hurt is when I notice!

Like I said, mine isn't as serious as the others here but since I'm hurting and dealing with a cold again I thought I would whine a little more. My lungs are small and very sensitive so when I get a cold it usually goes to bronchitis. Ugh! Last year bronchitis wasn't enough so I had to get pneumonia too. UGH! I'm ready for a break here!!!

Again :grouphug: to everyone!
I have a cold to. It's been one cold after another around hee this winter
 
I also think this thread is a great idea. :thumbsup2

I have a moderate case of Crohns disease which has been fairly well managed by my taking mesalamine on a daily basis. My diet hasn't been restricted too badly, either - I know what aggravates the condition and I usually avoid those foods. The more frustrating thing is when I eat something that normally doesn't bother me but then for some reason suddenly does. The unpredictability of inflammatory bowel disease is not an enjoyable experience. And it's also embarrassing (not exactly a condition that most people want to have a discussion about if you know what I mean... ;) ).

On top of that I was just recently diagnosed with a mean case of Endometriosis. It aggravates the Crohns...the Crohns aggravates it. We're discussing hormone therapies right now to try to alleviate the symptoms and prevent the development of any more cysts...hoping to avoid a hystorectomy (did I spell that right?) since I'm only 36 years old and am not ready for a full system overhaul just yet. Have not been able to get pregnant thanks to these two conditions, but that's OK - our cat would probably be jealous of a baby anyway. :teeth:

I'm fortunate that I usually feel pretty good and lead an active, normal life - I'm also married to a fabulous and very patient man who also happens to love WDW!

I think the most frustrating thing about these chronic conditions is that there aren't any cures available - most people who don't know anything about these diseases think you take a pill for a week or two and then everything is all better. They don't realize that what we're talking about are permanent conditions that have a huge impact - emotionally and financially as well as physically.

Best wishes to everyone here - keep fighting!

Brenda :goodvibes
 
I'm pretty low on the totem pole myself. I'm hypothyroid (going through issues with it right now) and I have fibromyalgia, which seemed to be in remission for a couple of years but it's back with a vengeance now. I have pain all the time and I'm so profoundly tired, I can barely function.

I also have Barrett's esophagus, which is a pre-cancerous condition of the esophagus, probably brought on by acid reflux disease. I have to take Prilosec or Nexium to control the acid, otherwise I'm in some pretty bad pain.

:wave2:
 
I am also low on the totem poll. I have hypothroidism, ulcers in my esophagus, asthma and high blood pressure. I am on medication for all of these. I take 10 medications a day. I feel like I am a walking pharmacy. Right now, the asthma is bad and my activity level needs to remain low.

:grouphug: To all of you!
 
I agree that this is a great idea. Most people don't want to hear me because I too am "low on the totem pole", but I have fibromyalgia. It's been almost two years now and I am in pain every day. Chell, they thought I had lupus too, but everything came back negative. I really hate to complain because I know that a lot of people have it much worse than I do. In fact, my husband is a cancer survivor, or at least he is from blood test to blood test. You all know how this goes, you are only as good as your last blood test. But anyway, sometimes the pain really gets to me, so I truly understand how all of you feel. It is good to know that you are not alone. Oh and how could I forget it was suddenly found I have high blood pressure in the middle of all the chaos of finding my fibro.
 
I don't know why this didn't come up on my search! Ya'll can ignore that other thread I started.

I have peritoneal cancer stage III. It has a mortality rate of over 90% within the first year but with a new chemo combo and testing a new drug I'm hanging in there and doing suprisingly well all things considered. But boy, I'm sick and tired of being sick and tired!!

My mom has fibromyalgia but she seems as woefully uninformed as I am. What is it exactly and what causes it?
 
Hi! Great idea.

I have a "lupus like" connective tissue disease and psoriatic arthritis. Also suffer from migraines. I have endometriosis also, but the Pill keeps the pain at bay thankfully. I dread the day I have to come off it. I also have mitral valve prolapse (due for my next echo in July). I'm on methotrexate and Enbrel injections (OUCHY!!) and take relpax for migraines. I try to educate people, but sometimes it's just frustrating, such as when an insensitive coworker saw Arthritis Today on my desk and said "There's a whole magazine for THAT?" :sad2:

I try to make something positive come out of it all. Right now I'm on the Walk Committee for the local Arthritis Foundation walk.

Hugs to you all!
 
mickeyfan2 said:
Compared to these severe asthma seems mild.

Well we sure aren't holding a contest for the sickest Diser. Asthma comes with it's own set of problems and issues. We can all relate to each other on some level.
 
I feel guilty even posting after reading some of the stories on here. But seeing how there are days I want to vent about things, this might be a good place to do it. :teeth:

*WARNING: This could be long. :rolleyes: but I will try and give you the Cliff Notes version.*

I've had back problems since I was a pre teen. At 16 I was hospitalized for what the doctors first thought was my appendix and was later found to be a spinal problem. No MRI's way back in the mid 60's and my parents were told I was exaggerating.

At the age of 20 I started having more intense episodes and found an osteopath who was wonderful. I still hadn't had a regular MD believe me at this point. One day I asked the osteopath if he believed me. It's a moment I'll never forget. He looked me in the eye (BTW, he was old enough to be my grandfather!) and said, If I thought you weren't hurt, I would kick your Butt out of my office. He didn't say Butt.

After the birth of my first child, I was attempting to get back into shape and really hurt myself by doing sit ups. This landed me in the hospital for 4 days. When one of the original "She exaggerating" doctors saw the condition I was in he said to me, You really do have a problem! :mad: Left the hospital looped out on pain medication and still unable to stand up straight. Got home and found the osteopath and after one treatment was able to walk without much pain for the first time in 6 days.

ACK, this is getting too long. Well you get the idea. Now at 57 pain is always present. I have degenerative disk disease, rheumatoid arthritis and nerve damage. The final insult was getting hurt at work nearly 9 years ago and blowing out a cervical disk. I went through all the stages of death because, in many ways, life as I had known it was over. I found doctors who said they could cure me and others who said that I was going to have to learn to live with it. I went through terrible depression but was lucky enough to have a wonderful psychologist. The most important thing he told me was not to talk about it all the time because, if you do, people stop listening.

I learned to do a form of self hypnosis and to minimize the amount of pain medication I was on. It's been a real trip!

So I do things I shouldn't always do because there are all types of pain but the worst type is what is in your head. I have great days (like today isn't too bad) and terrible ones where I can barely walk (last weekend :( )

I credit my cats for making me move around to take care of them when there would have been days that I wouldn't have gotten out of bed. Most of the time I feel this chronic pain has made me stronger mentally and emotionally than I would have been without it. I wish, however, it would just go away.

I have a case pending with SS. I don't think I'll get it. I've tried before and I must look dishonest. I have mixed emotions about fighting for it. If I do, I'll have to think about how I feel. The more I think about, the worse I feel. I'd go back to work in a minute if I didn't know that in a day or a week or a month, I'd really get hurt again. Sometimes I get hurt because I sleep the wrong way!

So that's my story. Sorry I rambled. I can tell you that right now it's sunny with blue skies outside my window. Even though it's cold now, most days moving to Florida was the best thing I could have done for my back.

OK, group hug. :grouphug: :teeth: Now don't we all feel better??! :rotfl:
 
DisneyMim said:
I agree that this is a great idea. Most people don't want to hear me because I too am "low on the totem pole", but I have fibromyalgia. It's been almost two years now and I am in pain every day. Chell, they thought I had lupus too, but everything came back negative. I really hate to complain because I know that a lot of people have it much worse than I do. In fact, my husband is a cancer survivor, or at least he is from blood test to blood test. You all know how this goes, you are only as good as your last blood test. But anyway, sometimes the pain really gets to me, so I truly understand how all of you feel. It is good to know that you are not alone. Oh and how could I forget it was suddenly found I have high blood pressure in the middle of all the chaos of finding my fibro.

From what I know about Fybromalgia,it's a nasty painful disease.
To the poster who takes 10 pilld..That's just under what I take now At one point I took 42 pills a day
Virgo.I get SS.They initially turned me down . My ex lso has full blown AIDS and has been turned down 3 times now..SS is VERY hard to get..I think I only got mine because my local congressman wrote them a letter.
I had an online friend who survived Lymphoma. She was very very sick and we used to joke around about who was sicker At the time ,she was clearly sicker.. She's been in remission at least 5 years now and she still emails me and asks me if I'm still sicker than her. I tend to joke around about my illness. It's one of my ways of dealing with it. I think you really need a sense of humor in a situation like this
 
This is a very good idea for a thread. With my diagnosis (see my sig and my first tag), we already have a thread for it, but I there are so many other chronic diseases that have a drastic effect on people's lives in addition to cancer. I thought I was healthy for 51 yrs until 2004. After reading some of you posts, I realize how lucky I am to have had 51 healthy years. Now I am hypothyroid and hypertensive for which I am taking meds. The hypothyroidism is currently under control but I can't seem to get the BP down. Must be something to do with living with two teens. :confused3
 
Ijust saw this on the front page of AOL

U.S. Cancer Deaths Fall for First Time in 70 Years
By MIKE STOBBE, AP

ATLANTA (Feb. 9) - The war on cancer may have reached a dramatic turning point: For the first time in more than 70 years, annual cancer deaths in the United States have fallen.



Evan Vucci, AP
Women celebrate in 2004 at the finish line of the Avon Walk for Breast Cancer in Washington, D.C. Experts say the war on cancer has reached a turning point.



The number of cancer deaths dropped to 556,902 in 2003, down from 557,271 the year before, according to a recently completed review of U.S. death certificates by the National Center for Health Statistics.

It's the first annual decrease in total cancer deaths since 1930, when nationwide data began to be compiled.

The decline is welcome news in the medical community, said Arthur Caplan, University of Pennsylvania bioethicist.

"The war on cancer" has not always gone well in the public's eyes, Caplan noted. Despite decades of scientific research and screening campaigns, radiation and chemotherapy cancer treatments remained harsh and total deaths continued to rise, he noted.

"It's no surprise this dip in numbers would be greeted with joy by 'the commanders,' if you will, in the war on cancer," Caplan said.

For more than a decade, health statisticians have charted annual drops of about 1 percent in the cancer death rate - the calculated number of deaths per 100,000 people. But the actual number of cancer deaths still rose each year because the growth in total population outpaced the falling death rates.


Cancer Deaths


Getty ImagesHere is a look at the most common cancers and the deaths they caused in 2003. These cancers account for 51 percent of U.S. cancer deaths.

Lung
Men, 89,964; Women, 68,122

Colorectal
Men, 28,007; Women, 27,951

Breast
Men, 380; Women, 41,620

Prostate
Men, 29,554


Source: AP

"Finally, the declining rates have surpassed the increasing size of the population," said Rebecca Siegel, a Cancer Society epidemiologist.

Experts are attributing the success to declines in smoking, and the earlier detection and more effective treatment of tumors. Death rates have fallen for lung, breast, prostate and colorectal cancer, according to American Cancer Society officials, who analyzed the federal death data.

Those are the four most common cancers, which together account for 51 percent of all U.S. cancer deaths.

The breast cancer death rate has been dropping about 2 percent annually since 1990, a decline attributed to earlier detection and better treatment. The colon and rectum cancer death rate, shrinking by 2 percent each year since 1984, is also attributed to better screening. The prostate cancer death rate has been declining 4 percent annually since 1994, though the reasons for that are still being studied.

The lung cancer death rate for men, dropping about 2 percent a year since 1991, is because of reductions in smoking. The lung cancer death rate for women, however, has held steady, a sign that reflects a lag in the epidemic among women, who took up smoking later.

The total number of cancer deaths among women actually rose by 409 from 2002 to 2003. Among men, deaths fell by 778, resulting in a net decrease of 369 total cancer deaths.

With such a small drop in deaths, it's possible they will rise again when 2004 data is tabulated, said Jack Mandel, chairman of epidemiology at Emory University's Rollins School of Public Health.

Cancer is diagnosed more often in older people than younger people, and the large and aging population of Baby Boomers may push cancer statistics a bit. Even so, that should be offset by treatment improvements and declines in smoking and cancer incidence.

"I still think we're going to see a decline," Mandel said.


02/09/06 03:40 EST
 

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