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Topic : How I Fought My Illness

Number of Replies: 301
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Created on : Thursday, July 07, 2005, 09:05:51 am
Author : dataimport
If you've suffered from a debilitating illness and lived to tell your story, please tell it to us. Share your most uplifting and practical ways to fight off illness.

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January 12, 2006, 6:41 am CST

Chronic Fatigue Syn and Fibro here too

Quote From: fyte4acure

I have been fighting with these illnesses amongst others for 7 years straight now.  I'm 30 today.  Please, if you have been suffering with these illnesses, get some support.  I go to Immune Support.com and get tons of support there.  It has been an extremely positive way for me to deal with these illnesses.  We are presently starting a letter campaign to bring more awareness to these illnesses.  Please, if you haven't already, take advantage of the information and support Immune Support offers.  it is a free service to us, and we make many friends and share tons of information.  You won't remember how you got along without the support after becoming a member.  They have chat rooms and message boards available to get support and answers to how people cope daily. 

  

Yours truly, 

Kristie : ) 

fyte4acure 

  

Hi Kristi, I too have been struggling my way through with CFS and FM for over 12 yrs now, acutely I might add.  I used to go to that same chat site but was booted permanently for giving out my email address, which is unfortunate considering I'm a support person locally and listed with the CFIDS Asso. of America.  I did find that room fun and helpful during my time there.  It still strikes me odd that 'we' are still so invalidated as an ill group of people not only by most physicians, but by friends and family as well in many cases.  "Invisible Illness" is most difficult to deal with as an individual, and we need all the help and support we can get.  By the way, the CFIDS Chronicle this month is dedicated to research on us, finally.  We truly need all the help and support we can get.  I hope you're doing well at present.  I wish you well.... 

  

Sincerely, jkpeachy 

 
January 16, 2006, 3:03 am CST

I have Uti.

Just want to help... 

  

In my groin area, it is smaller,  Lower back pain  right side,, Kidneys.  Have to get to Doc. 

  

Can make my own penicillin off of Coffee Grinds,  Will take six months, have to be Crystal pure white. and hard.. And  Look out  P.U. 

  

Avian Flu Is mutating too.  The More outbreak in one area,Its up to 15, In one area. and the The environment changes, Will transfer to humans  to humans soon.   

  

Take care.  John 

 
January 16, 2006, 5:25 am CST

Playing your cards

Perhaps the most difficult thing about being chronically ill, is not having control over your own body. It is a horrible thing to have what you do each day, at the mercy of a disease. I am a Lupus patient, very sick and flared right now, and every day is a struggle. I never questioned "why me", but found other ways to look at the situation. I think that I was dealt a bad hand. To which I have two choices: To Fold or To Play. Sometimes you can still win even with a bad hand, so choose to play.... Remember that in most cases, it could always be worse, but at the same time, be true to your own feelings. I still mourn for my old body. I am a wonderful spirit full of energy that is, unfortunately, trapped in a body that doesn't work so well anymore. Its ok to feel bad about that. Some days I do feel very alone, because no one seems to get it. This is very frustrating, but at the same time I don't want them to have to go through what I do just so they understand.
 
January 16, 2006, 1:23 pm CST

Rheumatoid arthritis and Crohn's disease

I have struggled with these diseases since 1992.  I have learnt through bio-feedback therapy and hypnosis to cope better with pain and to relax my digestive system. Because of my new found ability to control my pain, I have been able to almost eliminate pain medications (which sedated me) and exercise daily. I'm sure the exercise has been the thing to really help my joints! 

  

 I have also been surgery free for 3 years (which is an enormous change!) and I tend to have very minor flare ups less frequently. 

  

I can't tell how much better I feel because of my ability control my pain responses.  It may sound like crazy stuff but it really worked. 

 
January 16, 2006, 1:24 pm CST

Fighting away...

Quote From: rodfield

Hi Kristi, I too have been struggling my way through with CFS and FM for over 12 yrs now, acutely I might add.  I used to go to that same chat site but was booted permanently for giving out my email address, which is unfortunate considering I'm a support person locally and listed with the CFIDS Asso. of America.  I did find that room fun and helpful during my time there.  It still strikes me odd that 'we' are still so invalidated as an ill group of people not only by most physicians, but by friends and family as well in many cases.  "Invisible Illness" is most difficult to deal with as an individual, and we need all the help and support we can get.  By the way, the CFIDS Chronicle this month is dedicated to research on us, finally.  We truly need all the help and support we can get.  I hope you're doing well at present.  I wish you well.... 

  

Sincerely, jkpeachy 

I'm fighting away at this whole group of illnesses I have.  I found out recently that the numbness I've had in my left side of my body for the last 7 1/2 years was due to TOS - Thoracic outlet syndrome.  I've told my doctors since 98 that I've had a pinched nerve somewhere, but they could never find it; therefore they told me I did not.  Again, and many a times, I've proved them wrong.  I told them I had infections and they did not believe me, until I demanded a test, and sure enough I did.  Seems like once you are labeled with fibro/cfs and other diseases that they have no clue about, such as Lyme disease, myofacial pain syndrome, peripheral neuropathy, they tend to have a deaf ear when some amature tells them what is wrong with his/her health.   

  

Anyway, I'm in denial, in that I will be applying for my second job, a full-time job.  My first job keeps me busy enough, but doesn't pay the medical bills.  I might need to get surgery for the TOS, so I need health insurance badly.  So, this is my only option, unless I marry a rich man or a well off man with good health insurance, LOL!  Ha ha!  Don't tell my mind I'm in denial.  I still know I'm crazy, but don't tell my other personality that, LOL!  She has to find me a good job and health insurance, LOL! 

  

Take care  ; ) 

-fight 

 
January 16, 2006, 10:34 pm CST

Like Dr Phil Said, In Life Strategies,

Quote From: jazz22222

I survived an attack in 1989 which caused my breakdown, which ultimately resulted in Depression and Anxiety.  Does anyone on these message boards discuss these two conditions?

  After a while,  Just get back into the game of Life..When in his book, he talks about a DR.,  That a man came in and killed 2 people, with a 357  and put the gun to the Drs head, pulled the tigger twice, and nothing happened. He went thru the same thing that you did.. 

  

  Sometimes, You believe what DRs. Says.,, But if he told you that you are OK, Would you believe him? 

  

Push yourself to Exercise to make a Sweat,  Spinning, running, many forms to do that.. for 20 minutes a day.., At least..   Eat Right,   Potassium, magnesium, Lot of water, some green tea, pepperment tea..Calcium. 

  

Watch Iron levels,  Too much is bad, not enough will cause fatigue.  Iron In blood.  

I take b-Complex  sublingual liquid,  from Wal-mart.   Put under toungue for 60 seconds.  Many more supplements. 

  

I believe in a month or less,  you  would start  to feel better.. 

  

TC  John 

 
January 16, 2006, 10:41 pm CST

It doesn`t matter... This is the internet..

Quote From: joeygirl04

It has just occured to me that I posted in this area a very negative post and now realize this was a place for positive not negative posts. 

  

Please accept my apology! 

  

Joey 

You can post anything you want..  TC  John
 
January 16, 2006, 11:06 pm CST

Theres a new pillow, that is made that will support his neck more..

Quote From: joeygirl04

Hello everyone, 

 

This is my first post to the board but I have been a member for a few years now.   I am engaged to a wonderful man (who has his issues but is still wonderful) anyway, I am VERY VERY concerned for his well being and his LIFE!!!!. 

 

Ryan has SEVERE SLEEP APNEA among other heath issues (over weight, high blood pressure, depression and anxiety to name a few).  He stops breathing on average 50-100 times a night from the sleep apnea.  I am terrified that he will stop one of these times and not start again. 

 

He has to sleep straight up at times so he does not stop breathing but it is very difficult because he had hip surgery (which left him with no range of motion or strength) as a teen and is unable to walk, stand, or barely move because of that issue.  Which brings me to being over weight to a dangerous degree.  Not being able to move or exercise is a huge part of it.  Depression has taken over (he has days he doesn't even want to deal with it anymore but does for me and his mom), he is not able to get a good or even a decent nights sleep and is tired all the time. 

 

He has no insurance as he is unable to work due to the hip issue, weight, fatigue and depression/anxiety.  I have gone every avenue that I can think of to get him help and am now considering  going  to the Dr. in his place to get him what he needs.   He has to have a C-PAP machine..............  He Desperately needs one. 

 

I am disabled due to a horrific auto accident in 2001 (I won't even get into my own issues and health problems in this post as it would be too overwhelming) and do not have the resources to get him the machine (they are anywhere from $3000- $5000.)  Who the heck could afford that, what is wrong with people. 

 

I need help and don't no where to turn...........  Ryan is my whole world and if something was to happen to him I would not know what I would do......  I have not wrote to Dr. Phil as I know there are so many other people that need his help too and some to a more severe degree but Ryan's life is in danger and sadly the people that love him are the only ones that care.  He can't even get the meds he needs and the blood pressure meds if not taken can cause a heart attack if not kill him 

 

Due to being overweight to the degree he is he can not even get quality health care at an emergency room as they all say the same thing "you will not fit in this machine"  "Your weight is keeping us from helping you get the help you need."  "We can't help you because you have no insurance and no way to pay for tests, meds etc. "  What the hell is that................. I guess money is more important than a human life these days....... 

 

  He needs help losing the weight and can not do it on his own....  Gastric Bypass is not even an option because no one will even let him in the door to get help because he has NO MONEY, NO JOB, and NO ASSETS FOR CREDIT..... 

 

I will end this post as it is becoming a large book.  Thanks for listening and I would love to get any suggestions/ideas any of you may have. 

 

Thanks, 

Joey (female) 

 

 

On the Internet, Made out of small bubbles..  They have an info Commercial sometimes on TV.  

  

Being overweight, Is most of his problems.. Eat right... Have him start walking,  every month increase distance, to five miles..   Then have him make a sweat, for at least 20 minutes a day.. 

Have him push you if your in a wheel chair, or pull you. 

  

Walkfit has Orthopedics, that helps me. 

  

Go to Overeater's Anonymous,  or Food addicts anonymous,  There are many out there...TOPS.  Reasonable..  

  

TC  John 

 
January 17, 2006, 3:46 am CST

Sage is Natural anti_ biotic, chk with doc again.

Quote From: johnk3493

Just want to help... 

  

In my groin area, it is smaller,  Lower back pain  right side,, Kidneys.  Have to get to Doc. 

  

Can make my own penicillin off of Coffee Grinds,  Will take six months, have to be Crystal pure white. and hard.. And  Look out  P.U. 

  

Avian Flu Is mutating too.  The More outbreak in one area,Its up to 15, In one area. and the The environment changes, Will transfer to humans  to humans soon.   

  

Take care.  John 

I also try to take Ginger everyday,Turmeric and have to get echinacea combo  tea.  

  

Find a funny movie too, Good Laugh, Changes the chemistry In the brain..  

 
January 17, 2006, 2:26 pm CST

oooh my gosh

Quote From: fyte4acure

Faith, 

  

I am sorry to hear about your nefew.  I do not know a whole lot about this illness.  I can say that fibromyalgia and any other illness with unknown causes can be extremely stressful.  The unknown can create a lot of confusion, frustration, and helplessness.  Symptoms of what he has is very similar to symptoms of MS and fibromyalgia.  Maybe you can join a chat group regarding one of these and share your story.  I'm sure they would listen.  I chat on Immune Support.com   They have moderators who know a lot about fibromyalgia and other diseases.  There is also a message board in this site.  I hope you get the answers you need and he needs.  How old is your nefew?  How is he coping?  How are his parents coping? 

  

Yours truly, 

Kristie  

fyte4acure : ) 

ooohhhh my gosh... 

i can not belivie this i have the same disorder and it sucks. it hurts constantly. i am only 18 years old i was diagnosed last year after NUMEROUS MRIs and a whole lot of BS rom doctors some said there was nothing wrong with me i just pulled a muscle in my back but it turns out that actully as have a syrinx from T5-T12 which i understand is extremely long but it is so thin that i can not have surgery on it. later i was also diagnosed with a LESION of my brain which causes migranies, dizziness and other neuroloigical problems but as of right now i am doing good i am in coillege i am determined not to let these disorders to stop me!! 

 
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