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Hi, Julie
3 years ago

Glad to see you here...could you give us a link to the petition?  This group has been pretty quiet for some time now, it's nice to see someone here.  I think it's needed, but I just have too much on my plate to do it all myself....and some of the other hosts have gone AWOL.  If there's sufficient interest, I can reactivate the group.

PETITION Fair Treatment
3 years ago

Hi,
I'm Julie I have numerous chronic conditions not being appropriately treated and having trouble accessing assistance as mobility and strength weak due to breathing & fibrillation.Just composed a Petition that I would be grateful if you would sign regarding more appropriate treatment and assistance of chronic conditions internationally . It is called Fair Treatment

Welcome....
6 years ago

and glad to have you here.  there is nothing more painful than watching someone you love suffer.  I think all of us would take it on for them if we could.  unfortunately, we cannot.

i believe in universal health care as an ideal linda....the one flaw i find in your plan is that there will always be those who didn't pay their $100 who turn up at the emergency room anyway.  are we going to turn them away? and who will administer this?  if it's a government agency, you can forget about ever getting approval for anything quickly - just ask members of the nation's largest hmos or those who depend on the veteran's administration.  and the dubyas will always make sure the rich don't have to pay their $100 - while the middle incomes like me will need to shoulder the burden not only for ourselves but at least a couple more.  britain and canada have universal health care and their systems just don't cover some of the more expensive stuff - palliative chemo, for example, since it doesn't save lives and is massively expensive. (and if nurses and docs become government employees, well, have you ever needed to try to get through at the IRS?)

please don't misunderstand; i think health care should be a right, not a privilege.  we just don't have all the answers yet.

6 years ago

Welcome, Linda and Sherry.

for your son and for your family... may you have the strength and the support you each need to get through the road ahead of you all.

This group is, by nature of chronic and debilitating illnesses and conditions, usually quiet. But, we  do respond when we are able. Thank you for being patient with us.

My son is terminally ill with 2 chronic medical conditions
6 years ago

Hi, my son has a rare disease known as Wegeners Granulomatosis (there is no cure), its a auttoimmune and vascular disease and its in a pretty severe state...

He is also in End stage chronic Renal failure(Stage 5) and will be on dialysis for the rest of his life... He is 17... So, I understand and sympathize for anyone who suffers from chronic diseases and their families...

God Bless...

Sherry

***Please check my page out when you all get a chance

6 years ago

Hello, I am fortunate enough to not have a chronic disease.  I have family and friends who do.  I hope you will sign my petition to end health care as we know it.

I want to abolish all health insurance as we know it.  I would like to put it on the ballot for all Americans to vote on.  What do you think?
I think I have one of the answers to our uninsured as well as insured Americans. I would like to end employee benefits when it comes to health care along with other types of insurance. I also want to see the all-knowing, all-deciding that is done by insurance companies stopped when you visit a clinic or hospital. The way I think this would work is to have a pot of gold that all people could contribute to. If every person was to pay. for example, $100 per person into this pot of gold. All medical bills would be paid out of this combined pot of gold. The only criteria as to whether your medical bill gets paid would be to answer yes to just two questions: 1. Did a certified doctor, clinic or specialist order the treatment, medicine, hospital stay, or referral to a specialist or any kind of preventative care? 2. Did you pay your $100 fee into the pot of gold for every member in your family, monthly? (4 X $100=$400 for a family of 4). This is a very good price compared to what people are paying today: $1,000 for family of 4.  If so, your bill will be paid without question. This will put an end to insurance companies as we know it. A small percent of the money would be put into an automatic system that doctors and clinics and hospitals can be entered into the system to submit their bills. This will put an end to insurance companies playing doctor. This will put an end to Medicare/Medicade. This will put an end to figuring out whether it was a prior ailment, prior to paying into the fund. If your payments are up to date, your bill would be paid without any further questions. If there are 171 million uninsured Americans and you multiply that by 100 you would have quite a pot of gold. Not to mention those that are insured changing to our shared insurance costs.   Do the math 171 million times $100 = ? This would also end the millions spent every month in administering payments made to medical facilities and the cut in payments now in Congress for doctors by Medicare. Now the question of veterans; I would like to include veterans with the $100 per month payment being paid by the government and have them integrated into the system that we all agree is the best medical care in the world. When it comes to those who can't pay the $100 per month because of disability or unemployment or the working poor, their $100 per month would also be paid for by the government. I think if Americans band together we would not change medical care as we know it. we would only change the way we pay for it. Your comments? just1woman
We don't have a problem with medical care, just the way we pay for it. Please go to my personal site to sign my petition.  Comments please.

welcome, lynnzie....
6 years ago

sorry to have taken to long to greet you.  the group is pretty quiet these days - all of us who are hosts are dealing with chronic disease as well - but if there are questions, or problems, we are here to support you and/or research stuff.

Hello from a new member
6 years ago

Hello everyone

I have just discovered this group and am glad to become a member.

I was diagnosed with Crohn's Disease in 1996 and manage my illness with self-hypnosis and creative visualisation.  As a psychotheraptist I see many patients with a cronic illness and find that my own experience helps me in my work.

I shall visit this site regularly and watch out for updates.  Glad to belong.

  Lynnzie

welcome, kim!
7 years ago
glad you're here.  my hubby is going through the interferon/ribavirin blues himself right now, and not doing great, but the good news is that his liver enzymes have normalized and his viral count is so low it's undetectable.  if we can just hold him together with tar and baling wire for the next seven months.......hang in there!  if it's helping him, maybe it will help you too!
it's ok
7 years ago
no need to apologize for not being right there.  there's no judgement being made.  i have complete understanding of how we all must feel at times.  thank you for saying he and welcoming me and the others.  God Bless.  erielady
7 years ago

Welcome, Blair, Michael, and Kim. I apologize that you weren't all greeted earlier. All our hosts have chronic diseases and conditions which all too often keep us from being here or answering in a timely fashion. But, you are all welcome here and welcome to read through our archives and also to add helpful info and links.

7 years ago
hi, i'm new to the group and my name is kim, live in fl.  i have hep c and wouldn't wish it on anyone. i'm to end of my treatments in dec. but it never goes away and maybe it won't be the end of treatment. but i'm tired of being sick but i do alot of praying and that makes me feel better. and my heart goes out to diabetas because my x has it and we've gone through some tough times with that. i guess we all have something to live with just got to get thru it. God Bless
you too, blair!
7 years ago
sorry i didn't spot your post right away!
welcome, michael
7 years ago
this group is pretty quiet lately; deph and i have both been dealing with health issues, so please don't let the lack of posts discourage you!  however, as i've said before, we (ALL of the hosts here) are "on it" to offer support, affection, commiseration, or anything you seem to need when you post.  there are a fair number of RA patients  and others with autoimmune disease in this forum.  so, when time and the RA permit, please share your story with us.  we may have heard of something you haven't tried yet....or just be around as sounding boards.  i salute the spirit in you.
Hello everyone
7 years ago
I have severe Ra getting the best of me bless you Michael
7 years ago
Hi New member. i have Severe Fibromyaligia, spinal stenosis, degenerative disc disease, I have gone thru three surgeries. A cervical fusion, Fusion of my tmj muscles and a year and a half ago back surgery. I also suffer from Gerd had surgery for that in 1986. Just was told that my cholesteral was high and the dr. wants me to go on crestor. I eat no meat, shellfish, bread, eggs, etc. So i am disgusted at this point. Allergic to all pain meds how ironic and now waiting for results of a c t scan of my abdomen that I took this morning. Another apt. with my Rheumatolgist . Disgusted and fed up with all this stuff. Going to try a natural approach instead of the crestor and see how it works. Thanks all for this group.
7 years ago

Janet

I appreciated your comments, too.

daph.........
7 years ago

7 years ago

A link that works for my latest blog entry--

http://womeasure.wordpress.com/2007/06/27/26/

7 years ago

Welcome, Paula. We have a lot of info in the archives, too, so enjoy reading. If you have a specific request for info or for supportiveness or if you want to share info or encourgement, please feel free.

Lou Gehrig's
7 years ago
Hey! I found this group while looking for a group on ALS or Lou Gehrig's disease.

paula
7 years ago

Janet!! Whoo hoo!!!

For me, it has been a nightmare with my now ex-doctor... long story for another day. But, I found a new one today and will see her next week, assuming I can get out.

Anyway...

I just added another piece to ISAA's blog, if you're interested--

Pushing Jack Back Down the Beanstalk: So, I’m Fat; Must I Be Made Constantly Afraid?
http://womeasure.wordpress.com/?p=25

my previous entries--

Adventures of the Super-Duper-Sized Woman

Raped Fat Females Should Be “Glad of Attention”? I Don’t Think So!  

clean bill of health
7 years ago
have had my first post treatment checkup, no recurring tumors. yee-ha!!!!  thanks to all of you for your prayers and support.
7 years ago
and welcome, Krisin and Judi.
Anonymous
7 years ago
Thank you Janice for your welcome

I do appreciate it

Hugs
Kristin 
welcome, kristin and je.....
7 years ago

you will find a quiet group of kindred sprits here - people who are fighting to live complete lives despite the debilitating effects of chronic illness.  bring your worries, gripes, and questions here; we don't have all the answers but we certainly have empathy!!!

most of all, strive for the happiness that is your due.  i salute the spirit in both of you!

Anonymous
7 years ago

HI EVERYONE...

I THOUGHT I INTRODUCED MYSELF BEFORE BUT I SEE I DIDN'T.((FIBRO FOG)

ANYWAY I HAVE RA,OA,IBS,FM AND ON A LOW CHOLESTEROL DIET.I'VE LOST 11 1/2 LBS.IN 8 WKS. SINCE STARTING A LOW CHOL. DIET. I'M GROUP HOST OF      GRAMAS YOUNG AND OLD. I'VE BEEN A MEMBER FOR AWHILE,BUT NEVER REALLY JOINED ANY GROUPS UNTIL RECENTLY.THIS LAST YEAR HAS BEEN A BAD YEAR FOR ME AND HAVEN'TDONE A WHOLE LOT.NOW I WISHED I WOULD'VE GOTTEN MORE INVOLVED WITH CARE 2 SOONER.
                                         JUDI  E.

Anonymous
7 years ago
Hi all

I am a 48 y/o female that has been living with Chronic Pain for about 7 years now.

I have numerous problems with my spine ,  I have RSD in my rt hip , leg and foot and it seems to be starting in the lft hip now too.  I have FM and MPS. 

Doctors could not figure out what was wrong with me 7 years ago when they finally sent me to a Rheumatiod doctor that diagnosed me with FM and then the pain doctor I was sent to said MPS and Fm.   A few years later I got a horrible shooting pain down my rt leg from my hip while walking with me dog.  The pain just kept getting worse and finally I was diagnosed with RSD. 

I had surgery to repair my neck around 7 years ago and since then all the other things have been happening.    I also have problems with my back, but refuse to try surgery for relief this time. 

I go to Aqua Therapy , that seems to be the best thing for me of the many things they have tried   I also take Nortriptelene, Lyrica, Motrin, Bacolfen, a new drug for muscles.   I also take hydrocodone as needed and use patches for when the muscle pain gets bad.

I am happily married with 4 children between us, I have to boys 17 and 21 and my husband has 2 beautiful girls 19 and 20.   We have a little white Bichon dog named Snow Angel and a new white kitty named Nikki.

That is what seems to sum me up , lol

So I am looking forward to hearing about you all and learning more about the diseases we all cope with

Hugs

Kristin
welcome, carolyn
7 years ago

those mysterious things that force docs to think outside the box are the toughest, and i can only begin to imagine how frustrating it is for you.  i had carpal tunnel before anyone had named it and the docs just kept patting me on the head and telling me it would go away.  point:  just keep bugging them until somebody figures it out.  you have the right to feel well!!

i can only echo daph's sentiments on the rest.  the group is quiet for the most part, but if somebody posts, we're on it to offer support, information or just friendship.  i thinks that's pretty true for most here.

dump your worries here on the doorstep. we may know something you haven't heard about yet; if not, sometimes just putting it out there helps. 

i can't attest to this, since consistency with exercise is my great weakness, but i hear that some yoga, done consistently, helps with weight loss and with the pain of chronic disease.

i salute the spirit in you!

7 years ago

Welcome, Cary.

I do sympathize with all you are going through. A lot of us here have similar tales.

We are a petty laid back group with lots of quiet times, but we are still here and supportive when needed... and we were are able to be.

Again, welcome.

New Member
7 years ago

I am a new member as of 4/16/2007. I have RA and other chronic problems that have baffled the doctors for about eight yrs. My main problem now is gaining weight!!!! I can't exercise to get the lbs off because I always end up in bed the next day, even if I go light.  Any suggestions or ideas would be appreciated.

Thanks - Cary

i hear it's pretty common, titti
8 years ago

i have a friend who has beaten thyroid ca and has to go off medication every few months for an iodine scan.  while she's waiting for all the thyroxin to leave her system, she really bottoms out.

based on her experience, you can't go straight back to your highest dose after stopping it or reducing it.  your body will be too sensitive to it, and it can make your heart race and many other things that are definitely ones to avoid.

we are here for you.

8 years ago


I haven't been feeling well since I gave birth to my daughter. It's been difficult adjusting my medication. It's common they say, but it's abit strainful sometimes. I'm always tired, lacking energy. Seems like I've tried everything but nothing helps.
8 years ago

Titti

Welcome to our group, which tends to be quiet but supportive when needed.

Hi all!
8 years ago
Just joined the group, don't know if there are more in this group with hypothyroism? I've had it for several years.
daph, you sweetheartl
8 years ago
thanks......calmer today.  think i can make it until tuesday when i get a better idea of what's going on without having a litter of kittens over it.
8 years ago

Janet

thanks, sam!
8 years ago
appreciate it, need all the prayers i can get......................
8 years ago

You understood right Janet.My parents had the recessive genes that when combined caused the WD.My son was tested and he is not a carrier of either gene so he will not pass it on.

You are in my prayers hun and I will light a candle for you

wow, that's interesting
8 years ago

did i understand you right, sam???  that if the disease manifests in you, you don't carry the gene to pass on to your children???

if so, i guess that's something to be grateful for (easy for me to say, i'm not the one passing up broccoli!)  most of these things are inherited through two recessive genes from people who were not symptomatic themselves, and often had no idea they had the genes.

would like to ask for your prayers, everyone:  as some of you know, i'm a two time breast cancer survivor, with a genetic predisposition.  anyway, to cut to the chase, blood in my urine yesterday; bless the e.r. doc who ordered a c.t. instead of just assuming it was a uti and sending me home on antibiotics.  the ct showed a spot on my bladder.  now waiting for urology to call with an appointment.  the good news is that, even if it's bad news, this is usually very treatable.

zen hugs to all of you---

8 years ago
Daphne thanks sweetie

Yes Janet I do stick to the diet pretty much.The hardest thing to go without is mushrooms.Pears and brocolli are also high in copper so I avoid them.Brocolli is so hard though cos I love it.
WD is a very rare condition.Two of my brothers also have it and my two sisters are carriers.You can not be a sufferer and a carrier

8 years ago

Welcome, Sam and Rodney. It is good to see you here.

Sam Gang, this is a wonderful woman, imho.

I apologize for not being in here too much lately, but life does have a way of getting busy in other areas and running time out, you know?

I hope to get into our archives soon and sort out what we need on the main page for reference and how to combine some threads. When I do have time to do this kind of housekeeping, I will warn you all first.

Now.... for all who celebrate a special holiday during December, may you have a safe and joyous one!

Howdy All
8 years ago
I was recently diagnosed with Chronic Colitis..........I'm learning a lot about myself as of late, I thought this might be a good place to learn from other folks dealing with Chronic illness.
thanks, sam!
8 years ago

for a really interesting post.  i wasn't familiar with wilson's disease; i guess it's pretty rare.  i hope you've been able to stick with the diet and treatment.

haven't heard much from the group lately.....what's up, everyone???

8 years ago
Hello all.My name is Sam and I live in the UK.I was diagnosed with Wilsons Disease 6 years ago.WD is a copper metabolism disorder .I found this info to explain it a bit more to you

Wilson's Disease

Wilson's disease causes the body to retain copper. The liver of a person who has Wilson's disease does not release copper into bile as it should. Bile is a liquid produced by the liver that helps with digestion. As the intestines absorb copper from food, the copper builds up in the liver and injures liver tissue. Eventually, the damage causes the liver to release the copper directly into the bloodstream, which carries the copper throughout the body. The copper buildup leads to damage in the kidneys, brain, and eyes. If not treated, Wilson's disease can cause severe brain damage, liver failure, and death.

Wilson's disease is hereditary. Symptoms usually appear between the ages of 6 and 20 years, but can begin as late as age 40. The most characteristic sign is the Kayser-Fleischer ring—a rusty brown ring around the cornea of the eye that can be seen only through an eye exam. Other signs depend on whether the damage occurs in the liver, blood, central nervous system, urinary system, or musculoskeletal system. Many signs can be detected only by a doctor, like swelling of the liver and spleen; fluid buildup in the lining of the abdomen; anemia; low platelet and white blood cell count in the blood; high levels of amino acids, protein, uric acid, and carbohydrates in urine; and softening of the bones. Some symptoms are more obvious, like jaundice, which appears as yellowing of the eyes and skin; vomiting blood; speech and language problems; tremors in the arms and hands; and rigid muscles.

Wilson's disease is diagnosed through tests that measure the amount of copper in the blood, urine, and liver. An eye exam would detect the Kayser-Fleischer ring.

The disease is treated with lifelong use of D-penicillamine or trientine hydrochloride, drugs that help remove copper from tissue, or zinc acetate, which stops the intestines from absorbing copper and promotes copper excretion. Patients will also need to take vitamin B6 and follow a low-copper diet, which means avoiding mushrooms, nuts, chocolate, dried fruit, liver, and shellfish.

Wilson's disease requires lifelong treatment. If the disorder is detected early and treated correctly, a person with Wilson's disease can enjoy completely normal health.



hi, everyone!
8 years ago

daph, i am glad to hear from you again!  i had been worried about you.

lavinia, you speak words to live by.  i am sorry this has cost you so dearly.

8 years ago

I am so behind on welcoming all you new members. I apologize sincerely. Thank you for joining. We have many informative threads either active or in our archives. Please feel free to post in any of them... or to start a new one for something you need to present.

And, Lavina, I am sorry about yur loss. Thank you fr sharing and caring.

Welcome, everyone.

If you smoke... quit~~~ If you don't... don't start
8 years ago
Hello Rose

I lost my dear sister Barbara with lung cancer that had spread all through her body with-in a year. She was 55 years old, (it was all because of those damn cigarettes) these were her words... "I'll die before I quit". Well... she ate those words and took them with her.. to her death.
I have another sister that will be 70 next month and has terminal lung cancer, she told her doctor she is giving up the kemo for good. She no longer wants to continue with her treatments. The doctor told her  it was her choice. She says she feel great and thats how she wants to be. She still... continue to smoke. ;-(
My older brother had a 5 by pass, and the doctor told him to quit smoking, the doctor said..."the heart surgery won't kill you...the cigarettes will. After he started to feel good... he started up smoking! ;-(

I figured... "if God, gave us another chance in life, why don,t we take it?"
Please... lets put aside the cigarettes, if you don't smoke, don't start, your parents gave you life, don't let the cigarettes take it away!

Lavina B.. and

hi, tml
8 years ago

and sorry to have taken so long to get back to you.  you certainly have a full plate, and i think most of them are interdependent.  i'm truly sorry this has hit you so hard, and it's no wonder you are depressed with coping with all this.

i tend to refer to the bad days as "flare", which is also the term the medical professionals use for lupus when it's really acting up.  the time you can give to managing these things can make them all consuming, and i hope you still make time for other things in life that bring you pleasure.

we are here for you.

hi everyone
8 years ago
Hi, my name is TML. I'm glad to have found this group. I've read some posts and you all are wonderful people. I'm diagnosed with undifferentiated connective tissue disease (translation: early stage lupus), psoriasis, sleep apnea, hypoglycemia, post traumatic stress disorder, depression disorder, and anxiety disorder. My rheumatologist also suspects I have psoriatic arthritis - but nothing conclusive yet. I have days when I feel fairly well, almost like my normal healthy self. And then I have days where I am a complete and total mess. Lately, I've been having more of the messy days - and need some support and cheering up. Thank you all for being here. Together we are stronger.
hey, all
8 years ago
    sorry so absent lately!  hubby and i may be moving from fresno, ca, to spokane, wa!  busy getting the house (where we ordinarily live with our seven critters in contented pandemonium)ready for sale.

please, all, keep your fingers crossed for us, as this move will put us into a better neighborhood, and access better health care for both of us.

to all!
emily....
8 years ago
    you are so brave......my heart goes out to you.  cf is a tough one, and i admire your strength and grace.   

my family knows my wishes regarding organ donation.....everyone got their donor cards signed???? (and for those of you who think your chronic disease might mean no one can use your organs:  think again! at the very least, your retinas might bring sight to someone who is blind.)
warm hugs to you celia
8 years ago
    and you are most welcome.  we are here for you.
newbie
8 years ago

hi there,

I am new to all this and thought I would join this group and say hi

I have cystic fibrosis, which is now in its most severe stages, and I was told a year ago I need a double lung transplant asap in order to survive. I am doing really well so far and have beaten the docs predictions of one year, which is just as well as 15 months later still no transplant!

To keep myself busy I have launched a campaign to raise awareness of the huge shortage of organ donors, which you can see at www.livelifethengivelife.co.uk I am determined to do as much as I can whilst I wait because I hate just sitting there feeling helpless. I am currently in hospital, but hoping to get out of here in the next few days.

Anyway enough about me, just thought I would say hi, I hope everyone is feeling ok at the moment

Anonymous
thank you
8 years ago
I just want to say thank you for your warm response.  I am hoping that in time things will get somewhat better but right now it seems that there is no light at the end of the tunnel and it has been like that for quite some time. Again, thank you so very much, you can not know what it means to me to be able to share with others who experience the same things it makes you feel that you are not alone. Again, thank you and warm hugs for you.    
celia.....
8 years ago

i am so sorry to hear of your pain, emotional, as well as physical. you are truly facing many tough challenges, and your fight to keep going is inspiring.

you say you don't know what to do; with regard to your depression?  your physical health?  your living situation?    none of us has all the answers, but we might have suggestions.

in the meantime, please know that we are here for you.

Anonymous
New Member
8 years ago
Hello, My name is Celia.  I have been suffering from chronic pain ever since I was 25 years old when I first had my stroke (I am 47 now). Every since then my health has deteroriated.  I just recently came home from being in a nursing home for 5 months and it was discovered that I have Congested Heart Failure, Enlarged Heart and Hypoxia.  I am on oxygen constantly in home and have to take portables wherever I go.  The medications that I take for pain has stop even taking the edge off.  I do not know what to do anymore.  I am also a Type 2 Diabetic and also just been diagnosed with MS.  My depression has become more than major and I am at a lost of what to do.  I feel so helpfuless.  The man that I was living with is in a nursing home now because he suffered a Brain Aneurysm and now I am home alone without any help. I thank God for forums like this. Look forward to hearing from you all with some suggestions and advice.
Estrellita from kissimmee, Fla! Hello!
8 years ago
hang in there, jean!
8 years ago

i'm so sorry for what you're going through.  i know the sheer number of things must seem overwhelming.  i have no words of wisdom, but you are in my prayers.

janet

8 years ago
Hi everybody came across this group by accident.  I read a few post and decided this was just what I needed and decided to stay.  I have been diagnosed with Asthma with COPD and emphysema lung function of 25% so I am on oxygen full time. Also have IBS, 2 herniated disc, degeneration in the neck, high blood pressure,arthirtis,high cholerstol, glaucoma,sleep apnes,and of course with all the cortizone they had me on I am over weight there is more but I think you get the picture.  Oh yea depression also.
thanks, kat!
8 years ago

every little bit helps.

every one of these non-drug interventions can lower whatever your level is a small amount.  working together, over time, they can have a big impact.

are you talking about the big exercise balls, e.g., for situps, or the little ones, just slightly bigger than a softball (sometimes referred to as the "miracle ball method)?

Maybe I should start a new thread
8 years ago

Inflammation is the main culprit in Fibro & now I'm seen it linked to many other chronic illnesses.  It greatly aggravates any existing condition. When it sets in it causes microtears (my theory) in the muscles which is what causes so much pain. There are many things you can do to mitigate inflammation. (nuerologist also told me the migraines were caused by constant inflammation in my brain). That is when I started studying the effects of it & what causes it.

This is not an overnite solution & requires lifestyle changes but it is definitely worth it. I have made gradual changes over the last 2 years.

If you can get an exercise ball, that will help. Stretches & gentle movement, any movement you are capable of, even if it is minescule. Start slow, very slow, I know it's hard & it hurts, but just begin to move. If you can't get oxygen into your muscles they will only get locked & hurt worse. Build this up gradually & DO NOT PUSH YOURSELF. Didn't mean to yell, this is just probably the most important thing. It will only set you back, so even if you have only been at it for 5 min & begin to feel tired STOP. 5 min is better than nothing & you can do another 5 min after you have rested. This will gradually build & sometimes you will have setbacks. That's OK, start again but only as much as you can do & no more. Being tired is a signal that we often ignore because, well, we are tired all the time. Give yourself permission to do what it takes to heal. Easier said than done, but vital to the process.

Also any foods that cause inflammation such as white sugar, fructose, white flour, (basically anything whitewill cause it. (Food allergies come into play also). This is not easy to stick to but the closer you can the better you will feel. I will tell more about this at another time. Just don't beat yourself up. Sleep is vital, the body repairs itself when we sleep, that is if you sleep well. You probably don't. I can give many tips on making your rest more restful. I have turned my home into what I like to call the Ahh! Spa.

I will tell more, you can't put this in a nutshell, but this is a beginning. All of these changes must be made over time so that you are not overwhelmed & will be able to build upon your routine.

This is also helping my hubby with his diabetes. I have another theory that the cause of some illnesses are similar & we just have different 'weaknesses' that causes it to manifest in different ways. But that's just what I think.

2 yrs ago I was on 12 different meds.  Nuerontin, Flexaril, Imitrex, Topamax, Hydrcodone, just to name a few. Now I take an occaisonal blood pressure pill, OTC stuff for headaches & that's it. I do take supplements.

I hope I haven't been too lengthy here, I want to help others who are in so much pain. No matter how much better I get, I will never forget what that is like. I don't claim to be an expert, but I have found that this helps me. If I can help even one other person then I will do all I can.

Wishing you well ! Kat     

i'd love to know, kat!
8 years ago

i think about 90 percent of us in this group suffer from some form of chronic pain; most of us are under the care of conventional medicine that is almost but not quite working for us.

whatever helped you may also help one of us.

Hello, my name is Kat
8 years ago

I have dealt with CFS/Fibro for 16 yrs now. Maybe I can offer some encouragement to others. Due to prayers, love & finding what works for me I am currently much better.  This is recent, it is still a daily walk on a fine line. I have been twice tested for MS among other things so at times things have been pretty severe. Up until a year ago I had migraines that were anywhere from a month to 3 days apart ( for most of my life). My heart & prayers are with anyone who suffers. I know it can be very isolating. If anyone wants to ask about what I am doing to feel better feel free. I'll be happy to tell you what has worked for me.

My hubby has diabetes ( among other things) so your info, Daphne, is very helpful, ( love your name btw). I too am an info hound. Blessing & hugs to everyone!

8 years ago

Karen and Karen! Whoo hoo! Welcome.

Yes, please start a new thread to tell us about your condition(s)... anyone here. We all are here to learn and to be supportive of one another.

Plus, anyone who knows me even slightly knows I love to learn and to read... and to do research. The girl just gotta have it, ya know?!

If, however, you would like a thread one your particular condition but are just too shy to do it, just send one of our modertors a note... and we'll do what we can without mentioning your name.

Hi Karen! And Everyone Else Too!
8 years ago

My name is Karen, too! Small world, yeah? I know how it is to have depression, but I get a break from it by having manic episodes in-between. Take care,

Karen C. 

karen
8 years ago

good for you for hanging in there!!!  i have run across several people who deal with chronic depression, and i applaud you all for your valiant fight to enjoy life.  you deserve it!

terri - glad you have good support!  i have seen so many people with bipolar d/o who did not have a good support network hurt themselves more during one of the extreme highs or lows.  did you know that the world's foremost authority on bipolar d/o is, herself, bipolar???  but she's managed to pursue a career in psychiatry and to keep her problem in check.  please let her be an inspiration to you!

kerryann- i was mulling over what would be the right thing to say to you; i'm slightly familiar with myasthenia gravis(more from books than from patients) but i (and i'm sure, others) would like to know more about it.  if you have the time and inclination, please start a thread on it.......it's possible that some of our quieter members also have it, and are waiting for the door to open to discuss it.

Anonymous
HI, I'm new!
8 years ago
HI, my name is Karen and I have chronic Major Depression and agoraphobia and panic and anxiety disorders.  I'm glad to see that this group exists.
8 years ago
Thank you Janet and Daphne for the welcome. Janet, I have a great mom who has always helped me out with the bipolar and is helping me with the diabetes. And I have a few really wonderful friends who support me so I'm really lucky in that respect!
8 years ago
Kerryann... one of these days I will learn how to type and spell at the same time, and then we will all die from the shock! Sorry about that.
8 years ago

Welcome, KerriAnn and Terri.

And, it's good to see you, Gloria, Karen, Janet... And, we all hang in there together!

so far, so good
8 years ago

gloria....and you are in ours, too!keep us posted.

terry....so sorry for the poor ethics of the pharmaceutical industry.  sometimes it seems that the $ outrules the very people they are trying to help. easier said than done, but the key to diabetes in all cases is manage, manage, manage - do you have friends or loved ones who can help you do the right thing by yourself when/if  the bipolar d/o is marking it hard for you to????

8 years ago

Update!

The results are that I have a cluster of tiny calcifications. These "can" be cancerous, but not always. So, May 19th I am having a Stereotatic biopsy done. I am feeling very positive about the whole thing.

I'll keep you all in my prayers!

8 years ago

Hi All,

I was born with clubfeet which sounds worse than it looks, but the only other decent term for it is talpes equinus. *Horse?!* Two operations later, I am in some degree of pain every day and have days when I can barely hobble around. I also have had manic-depression most of my life. Last year I found one of the drugs I was taking for the depression caused me to acquire diabetes. The drugmakers knew it caused diabetes and still left it on the market. So in order to save my life one way, I cashed in for a life threatening disease instead. I'm not bitter or anything, it's just life but it's nice to be among others with problems.

Hi!
8 years ago

  Hello Kerry-ann:

I just saw you post and I think it's wonderful that you're "hangin' in there". I have a friend with M.G. so I know some of the battle. Hope to see you around!

   Karen C. 

8 years ago
hi all im kerry-ann im 24 years old , i have been living with myasthenia gravis for the past 8 years the doctors say im a miricle i have died twice and well im still here
gloria
8 years ago

don't panic - a swollen lymph node CAN go hand in hand with breast CA but doesn't necessarily mean that you have it.  take a deep breath, think calm thoughts, and manage your stress in whatever manner works for you.  cancer thrives on stress hormones.

we are all here for you.

beverly
8 years ago
you just say it, and say it, and say it, until some of your anger dissipates.  your plate is overflowing and the system has certainly treated you unfairly (understatement!!!) - and not getting some of that anger out is unhealthy.  being a sounding board is part of what we are all here for.
omg
8 years ago

sorry i missed all this!  i usually hop on and look for recent posts to make sure that everyone gets acknowledged - which daph has so graciously done - but somehow missed this thread.

as usual, i have a suggestion to share, not as medical advice, but from personal experience (i really should have studied for an N.D.!!) my hubby has mild psoriasis (which really acts up when his immune system kicks into high gear as a result of the hep c) and we have found that the lesions go down dramatically with a paste made of smashed aspirin and 0.9% saline (basically, contact lens drops).  we put it on for an hour and rinse it off, and the redness is reduced by about half.

8 years ago

Welcome, Gloria. I am sorry to hear of your chronic condition, including the swollen lymph node. Hopefully, you will find supportiveness and companionship here on your journey. We have many very knowledgable and good folk here.

8 years ago

Hi I'm Gloria. I have FM/CFS and migraines. I currently am awaiting results of an ultrasound and mammogram.

The Dr mentioned a swollen lymph node also. Does anyone have any info on this?

Thanks!

9 years ago
You're most welcome, Jim. There. It's gone now.
9 years ago
omg-yes remove the double post. thank you
9 years ago

Welcome, Jim. That is indeed a lot to deal with. I hope you do get some resolution from the officials... and some help with your pain levels as well.

(Also, would you like me to remove the accidental double post for you? )

9 years ago

Hi all. Guess I forgot to do this a while ago. Anyhow- Im Jim, I have psoriasis, psoriatic arthritis, gout, diabetes, kleinfelters syndrome,auto immune problems, glaucoma and a few others.

As of today I am waiting to hear back from health insurer about if they will approve Humera injections for me for the psoriatic arthritis. Its been a bit painful lately.

Hope everyone is ok.

9 years ago

More than welcome, John. Come on in and make yourself comfy. We are a fairly laid back but valiant group here. Thanks for choosing to join us.

9 years ago
Why thankee ma'am
9 years ago
Howdy John, its very nice to meet you. Welcome to the group.


9 years ago

Howdy all,

I stumbled onto this group tonight and since I have Fibromyalgia/Chronic Fatigue Syndromes, Diabetes type II and several other chronic conditions, I thought I would join.

That is if y'all don't care.

9 years ago
Welcome, Beverly and every new member. Thank you for sharing your pain and your triumphs with us. May we all grow stronger together and more able to meet the challenges we face in living with chronic diseases in ourselves or in someone we love and care for.
chronic pain with chronic late stage lyme disease
9 years ago
I apologize for my font  being larger than a lot of the others.  I have went blind three times now with the lyme disease, this time was in the right eye only and am currently on pred forte drops and a dilating drop every two hours.  I also have lyme arthritis, severe almost daily migraines, tremors, the list will go on.  I live in Tennessee, and according to all the infectious disease doctors here there is no lyme disease here.  I learned I had lyme after having gone completely blind, after years of severe daily migraines and vomiting to the point of losing almost 100 pounds in three months time from vomiting so much.  Was dehydrated several times they just thought I was "drug seeking".  I did not care what they did for me or to me, just "please make it go away!!"  I found an opthalmologist, actually by dear husband did, I could not even see the phone book, let alone the numbers, after a six hour trip to the emergency room for the blindness, and the doctor, thank goodness, had just moved to Tennessee recently but was trained and worked in the upper east coast and had seen lots of lyme disease and sent me for a battery of blood tests.  I have no idea how many tubes they took but I know it was a lot.  I couldn't see them to know.  The blindness, sneaks up on me as well as the pain in my neck, back, knees.  My feet and hands draw up.  Short term memory loss (so please bear with me, if I repeat myself constantly).  I have been told by different specialists that I had rheumatoid arthritis, MS, that there was nothing wrong with me. I am sure a lot of you have been told the same things.  Applied for ss disability and was denied while I was blind.  Am trying to work up the courage to try again.  I have attempted to go back to work as a waitress several times and had to go out on sick leave (which is what I am doing now, with no pay), I have two children an 8 year old daughter who is hearing impaired, and a 4 year old son.  I hope I am not talking too much, I am sort of trying to get a little of everything in here until I get the feel for what is going on.  I also have the chronic fatigue, which is awful.......
yes, true
9 years ago
vicious cyle, isn't it?
9 years ago
Chronic fatigue can also be a symptom of depression. 


no, i haven't
9 years ago

i have chronic insomnia, but don't think i have sleep apnea - hubby says i don't snore except when i have a cold!

actually, my "chronic fatigue" pretty much disappeared when i entered into a happy and emotionally healthy relationship.  my question was more directed toward helping you find another route to explore, based on my experiences with patients.

i'm not presuming to advise here; it's not my place.just throwing some food for thought into the discussion pot.

Chronic Fatigue
9 years ago
Chronic fatigue is the pits and hard to figure out because so many things are contributing (as was already said). Have you been checked for sleep apnea with a sleep study? I have it and I know you can be a walking zombie when you can't get proper sleep. It's like you want to sleep all day and then all night too, but you're still tired.
Just curious,
Karen C. 
katie-just a thought
9 years ago
chronic pain is notorious for causing low-grade depression (who wouldn't be depressed, never feeling quite well?)and depression is notorious for causing constant fatigue.  maybe you have a chain reaction going on there.  have you tried tricyclic antidepressants for pain and sleep?  also-i had a patient once who was seeing a pain management specialist who had her on 800 mg. of guafenisin (same stuff as in cough syrup) several times a day to relieve the symptoms of fibromyalgia.
welcome karen, lorelei and katie!
9 years ago

glad to have you with us.  the support of people who understand what each of us is going through makes it so much easier for all of us.

i am going to start two new threads, and would welcome input from one and all - effective complementary and alternative methods, and people who think they might have a genotype (don't meet all the criteria for a syndrome, but sure have the symptoms!)

9 years ago
Maybe one of your medicines is causing fatique. (or if you have pain more at night, maybe you're not getting enough "good" sleep.)
??
9 years ago
Loved the doctor I met today. Not only is a Rheumatologist but he's also an Internist so he can be my PCP! He heads the fibromyalgia studies @ Cedars Sinai in Los Angeles & will be setting me up w/that. I really liked him so far. He advised me that I do indeed have fibromyalgia but do not have chronic fatigue....so why am I tired  if I don't have chronice fatigue? I've been tired my entire life & would love a nap right now! Oh well. He gave me some paperwork to bring home to read. Also, the studies @ Cedars does a biofeedback thing & get you off of medications which would be nice. The jury is out but so far I like him. Yeah! A doctor that understands fibromyalgia!
9 years ago
Howdy, Lorelei from Texas! I came actually on Dixie's superb recommendation, and I do know a few of the good souls here already. I have been dealing with chronic pain for 5 years. I suffer from degenerative disk disease, and it is rapidly progressing. I have filed for disability, and am on the rollercoaster waiting for an approval, or the appeals process that I have been told to expect. I have tried many alternative therapies, and am doing intensive PT in the water at the moment, and then returning to the neurosurgeon for a surgery reevaluation. He says I'll still be physically and legally disabled after the surgery, so I will probably still consider it a last resort. Meanwhile, I am a counselor, and my brain is still intact, so I  am doing some volunteer counseling for inmate's families and for hospice. Pleased to meet ya!
HELLO!!
9 years ago
I'm new to this group...I found it when I was looking for a place to send Daphne a Birthday card (Happy Birthday, Daphne!).
I have about a "thousand" chronic diseases, but I get along pretty good most of the time. Fibromyalgia is the worst right now.
Any hints in surviving this annoying problem?
Thanks,
Karen C.
9 years ago

Welcome, anonymous, Marty, and Katie. I am glad you have found a spot with us. Let us share our triumphs, skills, and assorted wisdoms so that we all will get thru our various trials a little easier... and it is easier when we don't have to go thru these things related to our conditions alone! In fact, it makes it a little easier just knowing that we are not alone... that someone somewhere knows, cares, and is going thru similar things.

Welcome.

Hi! Found you through Dreamy R's profile after she green starred me!
9 years ago

Thanks Dreamy R for the star. When I went to your profile to see what we had in common, I found this link in your profile. I may have been "invited" in the past but I couldn't join any further groups as I had way too many. I couldn't keep up w/what I had including two hosting jobs so within the past two weeks I unjoined many as I was not very active for a long time.

I was diagnosed w/fibromyalgia in 1995 although the symptoms, (there are tons), started in December of 1978. I have relocated from Massachusetts to California because of the weather & do not regret it for a second & never regretted the move. It's better for my health.

I'm apparently am in the middle of finding out that I probably have a chronic thing going on w/both of my hands. I was diagnosed w/bilateral carpal tunnel secondary to doing blood pressure checks @ my job almost an entire year ago. I had surgery which was not successful in October of 2005. I went to physcial therapy & one particular exercise caused excrutiating pain & my wrist clicked w/the movement of the exercise. I told them @ the time & everytime I was there. I told the surgeon that did the surgery & about the pain & clicking w/that particular exercise & nobody did anything. Another surgeon ordered an MRI of my wrist that had the surgery & it shows a particular problem. The symtom for the particular problem is....you guessed it, clicking. I'm absolutely furious about it. But, it's too late now. I'm sure the exercise caused the injury as I'm sure the surgeon would have seen it while he was in there.

I'm seeing a doctor tomorrow in Beverly Hills that's on the good doctor list for Rheumatologists. I recently set up w/a new PCP down the road from me so that I do not have to return to the building I worked in to see a PCP whom I loved! She understood fibromyalgia but I cannot go into that building yet. I have incredible anxiety @ the thought of it. Can't go there. It's truly associated w/pain for me. I was also advised this past week that the doctor should have put me on workmens comp as soon as they had the positive nerve conduction study as my condition worsened as any would doing the same repetitive job. Too late now. I did recently, within the past month have a negative nerve conduction study repeated. Neither hand now has it but each hand has equal pain.

I take numerous meds everyday secondary to fibro....my PCP wanted to see me before refilling the Tranxene, (clorazepate), for next month although the last time I saw her in September she didn't need to see me for a year. I was hoping to keep her. I just cannot go back to that building.

I have two happily married sons living in Massachusetts & one grandson that's four. My oldest son is 31 years old today! Oy Vey! I feel old now!

That's it for now. Glad to have found this site.

Anonymous
9 years ago

Hi my name is Marty and I was invited by Carol B. Thanks Carol.

I do not have any problems but my husband was diagnosed with Type II diabetes on January 26. It has changed our lives. I am finding much needed support around care 2.

Anonymous
introduce yourself
9 years ago

Hi anyone else from the UK here?

I am soon to be 50, of Irish blood, have coped with Chronic Fatigue and Immune Dysfunction syndrome for ten years,  despite that label it has very little to do with tiredness unfortunately, and far more to to with debilitating illness, chronic pain and neurological damage. The first two years I was bedridden,  but I manage my activities better now so I am able to get out of bed more often than not.

There is no treatment for CFIDS yet, but there is some marvellous research being done by a Dr Kerr in Edinborough, last year his research proved 15 genetic changes occuring in folks with my condition, he is optimistic that effective treatment will be devised in the future. Unfortunately all useful research has to be paid for privately at the moment, because the british gov insists on frittering away its funds "researching" pseudopsychological coping techniques, which anyone with this illness could teach them; meanwhile  thousands of kids who should be active have their lives on hold, lying bedridden in dark rooms. dont worry I will get off my soapbox now.

I was an accomplished artist, a dental assistant, a nature girl, loved horse riding, mountains, winter beaches, the sea, was married to the father of my gorgeous wonderful daughter who is now nineteen.

Now the neurological links that made my artistic abilities possible are broken, perhaps irretrievably. Friends say this is a tragedy, but I do not despair.

I am content to be single now, (people cant cope with the physical limitations and social stigma)

I have become a Reiki master/teacher (3rd degree), I live with my 3 year old collie/spaniel pup whilst my marvellous daughter lives away at college.

Managing the illness is all about prioritising, so I have learned a lot, developed sound values, grown into a more complete and satisfied soul, deriving enormous pleasure from very simple things, and I refuse to waste a second on things that dont matter. I have had plenty of time for learning so I have become a bit of a philosopher and spiritual thinker, despite my cognitive problems.

I have developed a great sense of humour now, and hopefully acquired more wisdom and understanding than the pretty dental assistant I once was could ever have dreamed of.

thats me anyway, now I am looking forward to getting to know you lot!

Katchina

oops!
9 years ago
no, cancer doesn't do well on happy hormones, thrives on stress hormones.....do happy things!  what makes your heart sing??????  do it!!!
9 years ago

Judianne: Thanks for the good word on Lexapro.

The Seraquel turned me into a hung-over Zombie. I slept 10 hours last night! I am hoping I will be able to stop taking it.

I hope you are avoiding the aspartame stuff. I have been reading bad things about it. Not sure what the truth is...

Good luck in finding the "right chocolate".

Anonymous
9 years ago

Janet - thank you - I never realized that cancer thrived on happy cells - so I will watch more horror movies now --  I have gone to having dark chocolate and there seems to be more varieties of it out there now ...

   

Anonymous
9 years ago

Hi Tanya - the system sucks no matter what state you live in - I am forced to work even though I was advised not too - of course ss disability turned me down - twice - I am now fortunate that I only have to work part-time because my ex passed away last year and when I turned 61 I was able to collect widow's benefits - they far out weigh what I would have gotten through the other route - but I realize that you do not want a spouse to die - we were married 35 years and separated 5 and divorced one year before he died .. I still miss him at times ...  What I wanted to say to you was that the lexapro is fantastic - I was on all kinds of different drugs and that was the one that really made a difference for me ... good luck and I will drop back in later to see how things are going...

  

              

Thank you!
9 years ago

Thank you for the welcome!

I saw the psychiatrist today. She gave me Lexapro, and Seroquil to sleep.

I have to go to another Industrial Commission meeting on Mon.  Worker's Comp. paid me for "Living maintenance 2x" instead of paying me for 5 weeks of "wage loss" and 5 weeks of "living maintence", therefore saying that I was overpaid $1800.

The two checks should have been close to the same amount, and the second one did not have the second page stating what dates I was being paid for. They owed me for "work loss" I didn't question it. I emailed and called my case worker. I was told she saw what happened, and she said "she was fixing the problem right now". Several days later she still didn't have it fixed, so my lawyer filed an appeal. (this is in Ohio, where there were other dishonesty problems last year. )

Please everyone, if you ever get hurt at work, get a lawyer. I know I could not have handled all the games by myself. The system is so corrupt.....

hugs....
9 years ago
daphne said it so well....she speaks for both of us.
9 years ago

Welcome, Tanya. You have been thru so much and have been so courageous in seeking work, healing, and all... and still facing slammed doors in your face. That is more than rough. It is wrong.

I hope you can find some support, friendship, comfort, and info here that will help in some way. Thank you for sharing and for having a survivor's spirit.

Introduction post
9 years ago

I am Tanya. I have chronic tenosynovitis in my hand, wrist and elbow. I also have carpal tunnel. The surgery came to late, thanks to the games with worker's compensation.

I have been dealing with it 5 1/2 years now. The temporary agency got rid of me by pulling me into a stairwell and told me "not to come back to work until I was completely healed." This never happened. Then I got a notice from the Industrial Commission that we were having a hearing because "I abandoned my employment!" I then found a job as a low-paid security guard. The first doctor called the problem "carpal tunnel" but did not order an EMG for 6 mos. after the injury, so I wasn't able to get surgery for 4 years. It was too late. The EMG is still showing nerve damage. The pain has traveled up my forearm. I have a much better doctor now.

I tried to go back to assembly work after "doorknob twisting and lots of report writing" were causing me problems as a guard. That was worse! The pain medicine (Ultram) does not work very well, but we tried Darvocet and it makes me very sleepy.

After I was no longer able to do the assembly job I told my doctor that the company that injured me got rid of me two months after I was injured. I went on "work loss" unemployment. Then asked my dr. for help through W.C.

The vocational rehab paid for by the MCO was a joke. They were no better able to find me a job than I was on my own. They made me apply for 10 jobs a week. (I don't have a car, so I had to catch buses everywhere.) They paid me $339. a week during that time.

After about 5 weeks, the "contractor" job developer told me I should apply for social security, then 2 weeks later tried to force me to take a job at the airport selling popcorn for $8.00 an hour. The job did not even meet my doctor's restrictions! I told w.c. about how they were and quit fooling with them. (The MCO rep. said to me: "How can I send you to school? You can't type or write?" )

I then went to the Dept. of Vocational Rehab. By the time I got there my nerves were shot. I am now diagnosed with depression and an anxiety disorder.

What really pisses me off though, is the way I am treated in these places.

I'm asked:

 "Why don't you drive?!"

"Didn't you plan on what you were going to do when you got out of school?!"

....and they say "Well, you don't have very many interests, do you?"

I had a job I liked, and I was able to get to work on the bus everyday.- and it's THEIR FAULT I CAN'T!!!!!

....ands after I got hurt, I found out that there were two other people working at the Avon plant that developed the same injury doing the same job. (They were made "supervisors")

I guess Avon uses temp employees to hide lost time accidents.

I guess I do need to go on Social Security.  I'm not sure I'll be able to do much now.

re: breast cancer
9 years ago

judianne-keep up the good fight!  i read somewhere that cancer thrives on stress hormones and hates happy hormones.....i must have watched "young frankenstein" at least one a week during my chemo.  what works for you depends on your sense of humor.

have you tried dark chocolate?????

Anonymous
9 years ago

In my introduction I forgot to add diabetes 2 - that is hard to manage as I am a chocolate freak - and do not like the sugar free candy at all - I keep battling and losing -- how are any of you dealing with diabetes?

Anonymous
9 years ago

Hi Helen, Why don't you start a topic on lymphedema? I could not have told you what that word meant until 3 years ago when I had breast cancer surgery and developed it. I figured it would just go away. But it doesn't - I admit I am lax on my exercises and then pay for it later. Mine is the left arm. I wear the bracelet for it so no one goes and sticks me with a needle or takes my blood pressure there.

Can I ask, when did yours develop and where? It helps to talk about it. I usually do not - I had to curtail any lifting activities of anything heavier than a five pound bag of sugar or whatever.

Hope that you will start a topic - there may be others out there who have this also.

By the way they gave me a sleeve and gaunlet which hurts so bad that I seldom wear it. It is the loosest they could go.

Peace and love

Judianne

9 years ago
Welcome, Judianne and Helen. Oh how well I know some of these as well. Please feel free to start a thread on any of our conditions, btw. Someone... probably many someones!!, will enjoy and need the info and support... me included. 
Me and My Lymphedema!!!
9 years ago

Hello Everyone!

I signed in as Hello Kitty, but my real name is Helen.

I kind of wanted to see what this was all about.

I have lymphedema, and I tell you it's a constant management effort.  It tires me out knowing that I have to constantly manage it.

Does anyone else out there have lymphedema of the lower extremities. Can you relate to what I mean by "it's a constant management effort"?

Hope to see your responses.

Anonymous
9 years ago

Thank you for the invitation to this group. I have breast cancer and am in remission. I also have asthma, have had two strokes - with no residual damage - and now have been diagnosed with COPD. I am overcoming this all by enjoying life and doing the best that I can do and being the best person that I can be. I survived an abusive marriage and all that went with it - I suffered a TBI due to many different things and have learned my way back. I will be as active as I can be.

WE all have our mountains to climb and our paths that are blocked that need to be overcome...

    

          Judianne

9 years ago
Hi, Rebecca, and welcome. Dysthymia is very debilitating in itself, but the pain of arthritis on top of it is truly disabling in so many respects. Please feel comfortable among us.
Hi all!
9 years ago
Thank you Carol B for the invitation.  I have chronic depression also known as Dysthymia.  I have osteo arthritis, and just plain ole arthritis I guess.  I have psoriasis.  My brother who is six years younger than I, has just recently been dx'd with Psoriatic Arthritis.  Oh, I'm 55 he's 48 soon to be 49.  I won't be 55 offically until the 31st of this month but well.... lol.  I want to say hi to all and to tell you I also know what it's like to look normal(at least most of the time) but be all put out with these illnesses.  Like a ten ton truck has hit me most of the time.  It slows me up considerably and some people and one of my sister's have called me lazy.  My sister also thinks I don't care about my life because I don't get involved socially very much.  I'm too tired most of the time and it's a real challenge to do everyday ordinary things for me.  I also have social phobias which do not help at all.  She has arthritis issues also and she's older than I am, but she always was more social than I've ever been.  I guess that's why she doesn't understand what I'm going thru.  I'll have to cope with these things the rest of my life I'm sure.  That's what makes it chronic. Well, anyway, hellooooooooo! 
9 years ago

Welcome, Barb and Warrior. We know what it is to live with constant pain and agony even while looking fairly normal on the outside... well, some of us look fairly normal on the outside. But, appearances are often deceiving. Unfortunately, our society does put a lot of stock in appearances. So, we'll see if and how we might change that, right?

Anonymous
9 years ago
Hi all, sorry I've not introduced meself, but my puter up n died on me. 'Bad puter!' Anyways, lol, I have psoriatic arthritis, sacroiliitis (inflammation of the sacrum and ilium), ankylosing spondylitis, IBS and all year round allergies. Probably have other stuff too, lol
Anonymous
Who What is Barb j
9 years ago

   Fibromyalgia and a lot of auto immune  heat lung problems from the auto immune and well not sure if any join is not with RA and Osto Arth. I only want to touch base from time to time with others who know you can look OK on the outside and still be sick and udnerstand what it is like to be sick every day of your life

9 years ago

Welcome to our group, Mary, Iambeatle, and Rain. (I hope I didn't miss anyone or spell your names weirdly.) Please make yourselves at home here. We want to discuss what we are living with and how we manage the problem(s.) Living with a chronic condition is tough. So, we want to become supportive in as many ways as we can here. Thank you for coming and for sharing of your lives, thoughts, and hearts.

Introducing myself
9 years ago

Hi there!  I'm Rain, 37, English but living in Ireland.

I was diagnosed with BIH (Benign Intercranial Hypertension) last February.  BIH is also known as PTC (Pseudotumor Cerebri) or IIH (Idiopathic Intercranial <sometimes spelt intracranial> Hypertension.

It's a very rare disease, only 1 in 100,000 people have this disease.  It predominately affects overweight women of child producing years, but is not exclusive; men, young children and thin women can also have this disease.

In laymans terms I have too much water inside my head.  We all have a certain amount of water which supports the brain inside our head and normally the water continously drains and refills, in my case it doesn't so the water pressure builds up.  This causes extra pressure within the brain and also on the back of the eyes.

The symptoms vary from person to person but normally include the worst headaches you could ever imagine, and then some!  Other symptoms can include vomiting (usually with the headaches), visual disturbances, tinnitus, exhaustion, confused thinking and memory problems.

Worst case scenario with this disease is losing your sight.

Thankfully, once diagnosed it can be treated with medication and lumbar punctures (spinal taps).  Further treatment includes having a shunt fitted and/or eye fenestration.

BIH can go into "remission" but there is no cure.  My health has improved a lot since the summer and I hope that it will continue to improve.

If you wish to know more or have BIH/PTC yourself or knows someone that does please take a look at my group: http://www.care2.com/c2c/group/BIH 

9 years ago

OOPS! I must have hit the submit button twice... Sorry about the duplicate message .

I guess while I am here I will tell you some things about me that I did not..

I am from Penna. I am a respiratory therapist/nurse for the past 31 years. I also teach for a local college.. actually I do the clinical side of teaching with the students in local hospitals. I love it .. It is getting a wee bit difficult now with my back problems but lol that doesn't stop me..

Hmm well not sure what else I should tell you.. I do love to talk.. one major fault of mine lmao! Not to me though.

Well I better stop now before I go on and on lmao!

Have a great day !

Mary S

Hi
9 years ago

Thanks for the invite to join. I have many chronic problems but I'm not going to get into them.

Someone earlier spoke about being disabled and poor and how the two go hand-in-hand. Something is wrong with that picture! I think this ticks me off more than the chronic illnesses I have!

 Because I have a body that doesn't function properly I have to live below the poverty level? I have to get second rate medical care? I have to have bad teeth because I cann't afford dental care? I have to rely on the kindness of others to get me where I need to go because I cannot afford a vehicle?

Am I angry, yeah, you could say that and it would be true! Why, here in the US, does a disabled person have to also be poor?

Ok, climbing down off my soap box before I fall off!

Iambeatle

9 years ago

Hi Carol B and everyone:

 Thanks for the invite to join this group. This seems like a wonderful site to post your point of view, share your worries and find support from others. I find it an honour to be invited.

 I was diagnosed with arthritis a few years ago and recently found to have 6 bulging disc and one herriniated disc (L5). I also have a narrowing of my spinal column (scolosis). My disc recently herriniated and caused incredible pain as both of the nerve roots from L5 are involved.  I hate the medicine *narcotic* the doctor prescribed! I just hate feeling cloudy all day, but it was a necessity during this time.

After reading some of the entries here I think myself quite lucky. I thought to myself "what a wimp I have been over the past two weeks.. complaining to my significant other and siblings about the pain I felt."  I will keep all of you in my thoughts and prayers....

Love

Mary S

9 years ago

Hi Carol B and everyone:

 Thanks for the invite to join this group. This seems like a wonderful site to post your point of view, share your worries and find support from others. I find it an honour to be invited.

 I was diagnosed with arthritis a few years ago and recently found to have 6 bulging disc and one herriniated disc (L5). I also have a narrowing of my spinal column (scolosis). My disc recently herriniated and caused incredible pain as both of the nerve roots from L5 are involved.  I hate the medicine *narcotic* the doctor prescribed! I just hate feeling cloudy all day, but it was a necessity during this time.

After reading some of the entries here I think myself quite lucky. I thought to myself "what a wimp I have been over the past two weeks.. complaining to my significant other and siblings about the pain I felt."  I will keep all of you in my thoughts and prayers....

Love

Mary S

9 years ago

Welcome, Trish and Dixie. It's good to see you both.

No, getting old and/or unhealthy is for sissies. It is a lowdown, dirty, rotten shame. But, it is something we can manage most of the time. It just takes a lot of support and encouragement... and lots of good, solid info. So, let's join together and learn to cope with the seemingly unbearable together, shall we?

Anonymous
It's Me Dixie!
9 years ago

"They" say, I have :

Fibromyalgia, Congestive heart failure, Diabetes II, Nueropathy, Severe Tendonitious in my forearms...

I am active in caring for another who is elderly...

Just recently my eyes are failing fast - just got new glasses in November, was real happy... I am back to wearing my old ones or just looking at things fuzzy... like this computer!!!  

GETTING OLD, OR DEVELOPING DISEASES IS NOT FOR SISSIES   please keep me laughing - it is better than stress!

(this is presented in total black n white)  

DiXie 

Anonymous
9 years ago
Carol.. thank you for the invite.  I'm a survivor of aplastic anemia.. this looks like a great group .. for support and information.  Peace and blessings to all of you.
9 years ago

Welcome, Janet. Your experience and knowledge will be welcomed and an asset for our group. Thank you for your kind offer of helping put the medical lingo into "English."

Yes, cancer is included in our chronic conditions... Shoot, I'd even include chronic bad typing if Mirjam would let me get away with it!

Again, please make yourself comfortable here.

thanks for the invite!
9 years ago

if cancer is now considered a chronic disease, i guess i have one.  (two time survivor, genetically related.) my hubby suffers from chronic neurogenic pain from a back injury as well as hep c from a bad transfusion in 1987.  it would be nice to be able to pour it all out when it gets to be too much to manage.

i'm also a registered nurse, so would love to help anyone who's having trouble finding their was around medical lingo.

Daphne
9 years ago

Thank you for the warm welcome!

Hugs,

Susan

9 years ago

Michael, Susan, & RED

I am glad to see you all here. No matter what our chronic condition and/or disabilities, we face enormous hurdles just in living our regular life much less during times when we have even higher stressors. So, it is good to have a variety of groups here available to us to share our joys, our woes, our highs, and our lows. Again, welcome!!

9 years ago
  Hello!!

I'm here but not often....so I figured I would introduce myself while I'm here!

I have Lupus...It has mainly effected my lungs/heart and I have depression and fatigue!!!

There are other things...but those are the most bothersome!



9 years ago

Hello, my name is Susan.  I'm seeing several of my friends in here!  I have MS, FMS/CFS, chronic migraines, chronic depression, and I have rods in my back and a plate in my neck where I'm fused from ruptured discs.  I have several other related health problems as well. It's always nice to have a place to come and be with others that share their problems.

Hugs,

Susan

9 years ago

Hello Everyone:

My name is Michael and I am glad to be here.  I have several Chronic dieases, such as MS and AIDS, and I do agree with my dear friend, Daphne, that those of us who deal with these Chronic Dieases need places where we can go and just tell others how we are feeling and having everyone else truly understanding what it is like so we can better support each other.

I have also found that it really does help when we have groups like this one that can work with other groups and work as a team to make sure that we reach as many people as possible so that everyone can find the support they need.

I hope that everyone has a better day tomorrow and may God bless each and everyone of you.

Michael B.

9 years ago

Welcome all our new members. May you find a safe place here to be, to share, to learn, and to relax a bit.

Dealing with a chronic disease is a constant and lifelong struggle, one that never takes a break and is always needing to be checked. That in itself makes it hard for us and for those who love us and/or are around us. It is also why we need a place like this just to be ourselves.

So, again, welcome.

I am not disabled
9 years ago
And i can't talk to no one if i Do i am told i don't love my mother.But i do but sometimes i just feel like running away so i can have a break and breath but it makes me feel gilty.I do have a borother who is married but he don't care and my mother keeps telling lies to him .Like she has diabetis and she wants sweets but i have to say no so she tells everyone i don't love her and i hit her .So help me God i have never done nothing like that .Yes once when i was holding my daughter who was ill she screamed at me and told me its not fair that i don't hold her lol (now i can laught ,when it happent i could not )my brothers wife is having a baby so he keeps asking me for help and I say yeah sure only to get out for a lil but in reality i feel like screaming and running away .I know its selfish to say something like that  but there is so much more i am not gain to say on here .
9 years ago

Hi Sally, I think that it is an issue for a lot of us and maybe requires a thread for discussion and possibly actions to take at this time when we are finding ourselves under such massive attack, and social ambivalence.

Welcome Nina, you sure have a lot on your plate!  Who do you have for emotional support, and relief from all of your responsibilities?  Do you have friends or family members who can give you a break from all of the duties that you have as the caregiver for your loved ones?  Are you also disabled?  I know that many of us, like myself, are not only disabled, but are the main caregiver for other family members too.  It, again, is largely the result of the economy and the cuts made to benefits and services.  How do you cope Nina?

Hi i am Nina
9 years ago

I am 36 and live in australia where I am the carer for ,

My daughter Yasi 11 suffers from

 chronic migraines, epilepsy asthma and IBD(Inflammatory bowel disease)  and besides that she is very emotional and teary and her inmunsystem  is very low and she is always sick and has chronic tummy pain  and needs that little extra she sleeps with me and eats with me and I teach  her  and her father left me b’coz he could not handle a kid like ours and besides her I have 2 other children and I care for my very sick mother.

My mother 64

 

Diabetes,  asthma, high blood pressure, depression. Multiple Sclerosis ,Osteo Arthritis, Chronic Depression, Degenerative Disc Disease, Hypotension Bipolar Disorder epilepsy

 

introduce
9 years ago

Dawn,

i just read your post re:chronic disease and poverty. It is amazing to me that i am not the only one that this pertains to. Thank you for your input!

Sally

Happy New Year Everyone
9 years ago

And, thank you for inviting me Carol.  I have several chronic physical antagonists, that result in chronic poverty.  It's a side effect of chronic illness that is becoming more and more a reality in this country. 

If you are disabled, you are an endangered species.  Not only do you have to deal with the pain, and medical procedures, associated with your diseases; but, you must also worry about how your can pay for your necessities, or even keep a roof over your head. 

And, then there are the friends and family who have been socialized to avoid old, and sick people.  It's not just losing thier support, it's losing them...  It makes our FRIENDS  so important.  Thank you for being here.

circle

(large font for vision impaired)

Anonymous
Hello
9 years ago

Hello everyone Im Anjee, thanks for the invite Carol B. 

wow where do I even start, I have chronic back pain due to a car accident.  I have diabetes, asthma, allergies, high blood pressure and high Cholestrol.  I also have NASH which is a liver diease and suffer from depression.

I have 2 boys who have Chiari my oldest has had surgery on his brain already he has a 23mm Chiari.  His brothers is 8mm, but right now he doesnt show any symtoms .

My daughter has Chronic recurrent multifocal osteomylitis and she is currently in the hospital on a morhpine and toreadol drip, as well as steriods.

Hugs Anjee

9 years ago
Hello People, Thanks 4 the invite. My name is Stanley T. I sure have my share of Chronic Diseases'. 1st of all I have, Neurofibromatosis. Think it's hard to say? Try living with it. It's a central nervious system disorder. It causes tomers on the coverings of nervers. As well as all over my body. Mostly In my lungs & brain. I was born with it, but it really didn't bother me until 83, when I started having sezures. At the age of 30.  Now at the age of 52, I'm confined to a wheelchair. Use a computer to talk. (called a "Lightwriuter") I'm on O2 too. There is more but thats enough for now. Oh 3 x-wives also. LOL. My 3rd x-wife desided I would be better off dead & tried to poison me with my own Meds. But I'm tuff & fooled her. She was after my money. Not that I'm rich but enough for her to try & kill me. I am just learning the computer. Well one year I have been learning. Oh I'm  a bad speller & don't type very good. Does that count? That's ME  except I love my rock'n'roll. OLD rock. 50's 60's & early 70's. I also believe iu PEACE!!! I don't care for BU-SH.----PEACE NOW!----STANLEY T.-----
9 years ago
Thanks Carol B for the invitation.

I have dealt with chronic depression for approximately 30 years now.  I can't afford the medication right now, so life is...interesting.  I developed PIH and gestational diabetes during each of three pregnancies.  The hypertension is now chronic and the last doctor I was able to see figured the diabetes would become a constant "companion" at some point in my life.  Does arthritis run in families?  My mother is in a nursing home as she cannot walk any distance (like over 10ft) without support and has just now learned to feed herself again...and I may be just looking for trouble, but one of my knuckles is developing odd bumps.  And I have to hold onto a railing now going down stairs.  My father passed away at 47 from heart trouble and I am only 3 years younger than that.

DH has chronic migraines and back pain.  Also recurring kidney stones.

Son#1 has AD/HD and not to make too light of things "chronically too big for his britches".  Son#2 has "Sensory Integration Dysfunction".  Daughter#1 was born 2 months early, and so far seems to be by far the healthiest one of us all!

One of my good friends has MS and I wear one of those "spirit band" in her honor.
Thanks for the invitation sweet Joanne!
9 years ago
I am Estrellita from Kissimmee Fla. and I have Severe Chronic Psoriasis and Arthritis and Angina Pectora, Gout,my diabeties is under control now....High blood pressure which is under control now ....I am treated with Chemo Meds for my severe and chronic Psoriasis...It feels good to post about it in this wonderful group. hugs.Estrellita
Anonymous
9 years ago

Hi,

I`m Lorraine - and the invite came from Carol B.  (thanks Carol)

I`m not going to stay in the group because I`ll be honest I can hardly keep up with the groups Ive already got and the ones I run.

However, and what I would like to do for you is to make a few posts about treatments which you may like to look into.   After doing so, please do not be offended by my leaving - and I do sincerely wish each and every one of you the very best of health for the future.

Blessings.

Here I Am !
9 years ago

Christmas Eve Greetings to many people I see frequently in other groups...  Hi !!!

My good friend Joanne invited me and my illnesses to join, so here we are ! 

I've been Chronically Ill most of my life.  I now deal daily with (no kidding...) Multiple Sclerosis, Type 1 Diabetes, Rheumatoid and Osteo Arthritis, Chronic Depression, Degenerative Disc Disease, Hypotension, Fibromyalgia, Chronic Fatigue Syndrome, Traumatic Stress (post), and I Quit smoking almost 4 months ago !!!  So it's not all bad...

My real life includes the love of my life, Mark, our Australian Cattle Dog, Sandee, work for my church, reading, music (constantly), art and the glory that is Colorado.

I look forward to getting to know you all better.  Sharing ideas, emotions and caring can make a big difference in the life of anyone struggling with being chronically ill.

Off to wrap the last gifts !  Be back soon, and glad of it !  Peace and Joy,  Nina 

Anonymous
I am here...
9 years ago
I would like to thank Joanne for the invite to this group...when I was 8 I was told I had 'Growing Pains'...but they grew into System Lupus, Osteo & RA, Asthma, Bipolar Disorder, and I could go on...I went on SSDI when I was 39...17 yr ago.  I see a lot of familiar faces here I am glad to be in this group!
9 years ago

Hi, I am Daphne, and I have several chronic diseases as well as constant severe pain-- diabetes, degenative joint disease, osteoarthritis, CHF, Raynaud's, Neuropathy, etc.

But, I have a wacky sense of humor and a fairly cheerful disposition nevertheless. Some of it is gallow's humor in style, I think. But, it gets me thru the day, eh?

Thanks for having this group... and thank you, Carol, for inviting me.

9 years ago

Thanks Joanne for inviting me.I have sevar Ra.disease.Nice to be hear Mike O.

Anonymous
9 years ago

Hi, I am Dreama Runyon and thank you my dear Carol B. for the invite. I have M.S., a rare form of meninigitis that is re-current and will be a lifer. I also have degenerative disc disease, a steel plate in my neck, 2 herinated discs in my low back, and peripheral neuropathy in both arms and legs. I am on a morphine pump and disabled but that does not stop me from being a disability advocate and running a disability group here at Care2. I choose to turn my disabilities into abilities and not allow the pain to define me or overcome me. I am so happy to see more groups coming on here at Care2 for all who are suffering pain and need help, hope, and support.

Happy Holidays and a great New Year to all! 

Sally B
9 years ago

Hi, my name is Stephen and I also suffer with Hep C, and Chronic Depression. Regarding treatment with Interferon: I have consulted with my Psychiatrist, and a Gastroenterologist who generally administer the Interferon treatment, and it can be used with people who suffer from Chronic Depression, and a weekly visiit with a Psychiatrist to control the derpression. I don't have a heart condition, but none of my doctors mentioned anything about not being able to use Interferon with a heart condition. It also depends on high your Titer is: My Titer is so low that I show a false positive for Hep C. Hep C does have the ability to raise one of your Liver functions which is your Billirubin. It is supposed to remain at 1, but it can go up as high as hyper. If your doctor said that you are not a candidated for Interferon because of your heart condition, then I would not do the treatment without a second or even a third opinion from a Cardiologist. Try to find out how high your Titer is first. From what you described it is on the low to medium level. There are also certain foods that can raise your Liver count as well. Tomatoes is one of them, nuts, and other foods that are acidic in nature. If you stay away from acidic food groups, your Liver levels will be lower.

I was going to do the Interferon treatment, but I decided it was not in my best interest since my Titer is so low, and I am not bothered by the Hep C at all. It is also allegedly believed that it is also sexually transmitted, but I have not heard of anyone who got it that way. I was married for a long time, and when I found out I had Hep c I had her go for testing and she tested negative. I am no longer married, and I'm not sexually active. I have dated since my divorce and the woman I was dating was also tested and she came out with negative resulsts as well.

Hope this helps you out somewhat. Have a Merry Christmas, and a Happy New Year.

Anonymous
9 years ago
Hi Mirjam !
Firstly, thankyou so much for creating this wonderful group

Now, the reason I joined is as follows, my daughter Janet suffer from Nephrotic Syndrome, which is treated with Cortisone. This is a very difficult disease to live with, and Id love to share any infos with anyone else who has NS , or had it. Thanks.

love and light
Carol
Intrduce yourself
9 years ago

hi........my name is sally ........i have hepatis c...been diagnosed for about 7 yrs but have probably been hep c positive for about 30 yrs...i contracted it from iv drugs. i have just found out my viral load has increased dramatically in the past year and want to know if any one has heard of any treatments that may help. i do not qualify for interferon treatment due to heart disease and depression....anybody got any ideas???

Introduce yourself
9 years ago
| Hot!
Hello everyone,

tell us why you joined this Group. What kind of diseases do you have. And everythink you want.

Love,
Mirjam