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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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April 7, 2007, 12:31 pm CDT

How I Fought My Illness

Quote From: stemcell

 I am a 49 year old mother of two grown & married children.  I'll turn 50 this Christmas and can hardly wait!! 

 

I was first diagnosed with Non-hodgkins Lymphoma in February 1999.  Following a short remission, my lymphoma reoccured in 2002 and, I was facing a stem cell transplant--that was three years ago and counting. (If you are interested in more details, my story can be read on www.mayoclinc.org --click on Sue Stein's story.)  Today I live what I would consider to be a fairly normal life for someone who has been through a trememdous amount of emotional and physical ups and downs over an eight year period.  How did I, or how DO I fight my illness?  Most importantly, I believe in God; I believe in a healthy attitude (keep in mind, I did not say a "positive" attitude because I believe that it is ATTITUDE period; it is a choice we make to live and to fight).  And, while this may seem silly to some of you, it was very important for me during my illness to feel pretty.  I needed to feel like a woman--okay, sometimes a bald woman--but I wasn't willing to allow cancer to take away my sensuality and who I was.  Therefore, I coped by getting up every morning, no matter how I felt, putting on make up and doing my hair--when I had hair!  (Since I lost my hair three times, you can imagine how significant it was when I had hair to fix.)  I also made sure that I had pretty panties and bras to where.  Silly, I know.  It was like my little secret.  I could go into my chemo treatments feeling like the doctors didn't really know everything about me, nor was I going to share it with them--this allowed me to feel a little bit in control of my day.  My friends tease me that my life slogan should be "I'm changing the world one panty at a time", because anyone who is newly diagnosed and asks for my advice is told about my little secret.

 

I have come so far in eight years that I try not to waste time look ing back--I only look forward.  I will never forget where I have been, but it will never consume my life.  The Mayo Clinic in Phoenix has honored my journey  by making me their "poster child" in an ad in the Phoenix Sky Harbor Airport.  This ad is a constant reminder as to where I have been and where I am going.

 

My advice to any of you out there who have just been diagnosed--GET AN ATTITUDE--fight for what is yours--your life!

 

 

I also made sure that I had pretty panties and bras to where.  Silly, I know.  It was like my little secret.  I could go into my chemo treatments feeling like the doctors didn't really know everything about me, nor was I going to share it with them--this allowed me to feel a little bit in control of my day.  My friends tease me that my life slogan should be "I'm changing the world one panty at a time", because anyone who is newly diagnosed and asks for my advice is told about my little secret.

 

 

Thank you Sue:)  I really needed this today!

 

I have been fighting a chronic illness for 17 years.  In '91 iIhad an accident that caused me to lose most of my digestive system, so I had to live everyday on an IV that fed me fluid and nutrients.  Then 10 years later I developed liver cirrhosis/cholestasis because of the IV that was keeping me alive.  So seven years ago I had a four organ transplant (liver, kidney, pancreas, and small intestine).  Recovery has been really difficult, and has caused me to be depressed often.  I've had more than 60 surgeries, and I get really tired of being sick.  This past year I got fed up with the way my life was progressing, so I picked myself up and put a smile on my face and decided to do something with my life.  So I started back to school this year with the hopes of going to medical school next year.  I already have a Bechelor's degree so I just need a few more classes to fulfill my pre-requesites for medical school. 

 

Most of the time I am a happy person, and most people don't even know I'm sick, but this has been a tough week.  I've felt sick this week, so I'm having difficulties getting motivated to study for class.  So after reading your message I think I'm going to go visit Victoria's Secret and maybe that will help get me motivated:)

 

Good luck to you:) and thanks for the inspiration!

 
April 15, 2007, 2:53 am CDT

Hello

I am new here on this particular message board.  I have Lung disease. Interstatial Lung disease.  I am on Oxygen continuously.  I Had Lung surgery about 39 days ago and I'm still not over it at all.  I am still waiting for a good day.

 

My sleep is disturbed terribly, because my breathing is shallow.

 

I am hopeful.  But there are those moments,....the quiet ones....I live alone...and mostly that's good because I don't have to put up with "your always in bed" I can tell myself that. But then I am a surviver and I mentally know that being in bed is not a good thing but I also believe that in my heart of hearts that it is a temporary thing for me......

 

But there are a few moments that I think ....what if ....I live like this....then what??? THis can't be happening, or can it?   It better NOT!!!

 

I have to find it in myself to fight this thing somehow.... the Dr put me on Cortizone and strong dose of it and Lord only knows if it is part of what is putting me down or not.  I've been up all night long.  I sleep at odd times. I can't help this change. I trying to change that as well.

 

It's been a struggle.  I still am in great pain from the surgery.  And am short of breath and tire out easily.  But I am staying strong.  I have great Faith in MY Lord and Saviour.  Hope to get to know you out there and maybe help someone of you as well.  I will be a shoulder and an ear for you too...... love maggie

 
April 29, 2007, 10:24 pm CDT

necrobiosis lipoidica incurable. Hardly!

     Strangers often assume that my lower legs, (and areas of my upper legs), have been severely burned.  My lower legs are primarily covered in scar tissue and I have some open wounds, (currently only on one lower leg).  Most of the skin on my lower legs is brownish-red, and there are some brownish-red spots on my upper legs, also.  But the discoloration and the wounds were not caused by any burn.  Rather, they resulted from a rare disease called necrobiosis lipoidica diabeticorum, (NLD).

 

     No, I am not diabetic.  But most who develop NLD are.  Hence, the 'diabeticorum' tacked on the end.  I have NL.  No D.

 

     Many doctors had told me that NL(D) was incurable.  That I was stuck with the brownish-red spots for life.  And that was bad, but hardly the worst aspects of the disease.  Because in severe cases as I have experienced, NL(D) can be life threatening due to complications. 

 

     My own immune system has been attacking my skin, making it weak so that the skin can break open or ulcerate.  The ulcers, or open wounds, are slow to heal.  Too, they are at risk for becoming infected.  And last year ulcers did become infected.  I spent month after month on IV antibiotics, only for the infection to become resistant to them.  In the end my local hospital sent me home on a final, higher dose of IV antibiotics, siting that there was nothing more that could be done for me there.

 

     Thankfully, a major hospital was able to do more.  I was prescribed silver-coated bandages, (yes, real silver), an environment that the bacteria cannot withstand contact with.  The bandages have done wonders to fight the infection.

 

     However, infection was only part of the problem.  New ulcers and recurring infections were the risk unless I could somehow stop the attack on my skin.  In the past that had been addressed with long-term courses of oral steroids.  But those had their own horrible side effects.  Further, my doctors had told me that it was no longer safe for me to continue taking the courses. 

 

     I might have given up, but I refused.  Instead, I did all I could to learn more about what I was battling.  After all, I was not born with NL(D).  The disease had somehow developed.  And I thought, what had I done or not done, (compared to others who did not have the disease), that might have caused it?

 

     For me, it came down to diet - despite that so many of my doctors, (and there had been quite a few), had denied a connection between diet and NL(D).  Dr Phil's book on changing eating habits, (sorry, I've forgotten the title - but not the information), was one of a few that helped me make better choices about my diet.  I gave up junk foods and learned to like an abundance of fresh fruits and vegetables, (most of them in uncooked form).  I began to limit, even omit, certain meats, while adding to my diet, such things as nuts, brown rice, cooked dry beans, ect.  I stopped adding shortenings and cooking oils and margarines to my diet.  I stopped eating refined sugars and products that contained them.  I stopped eating products that contained bleached flour.  I limited or even omitted certain dairy products.

 

     My legs used to stay swollen most of the time.  The brownish-red spots used to be inflamed - they would itch and sting.  They would become ulcerated.  Not now.  Not as long as I watch what I eat.

 

     It's been more than 10 years since I was diagnosed with NL(D), and much of the damage was done before I learned that diet changes would help me.  Last year my ex-primary physician was talking amputation because of the resistant infection.  This year my left leg is ulcer free for the first time since 1999.  And my right leg is getting there. 

 

     In severe cases NL(D) can be dibilitating.  I've had times of being wheel chair dependent, times of being bedfast.  I suffer from post traumatic stress syndrome due to all I endured.  But I absolutely refuse to give into the disease process without a battle.  So I've seen some so called, "permanent", lesions (the brownish-red spots) fade, or disappear completely, or at least their centers return to the normal color of my skin.  That, after changing my diet.  Consequently, I no longer believe doctors have all the answers.  I don't believe I can expect some pill or treatment to be so effective that I can ignore being responsible for maintaining my own health through diet and basic care of my body.

 

    

 
May 11, 2007, 1:22 pm CDT

How I Fought My Illness

Quote From: marylahree

     Strangers often assume that my lower legs, (and areas of my upper legs), have been severely burned.  My lower legs are primarily covered in scar tissue and I have some open wounds, (currently only on one lower leg).  Most of the skin on my lower legs is brownish-red, and there are some brownish-red spots on my upper legs, also.  But the discoloration and the wounds were not caused by any burn.  Rather, they resulted from a rare disease called necrobiosis lipoidica diabeticorum, (NLD).

 

     No, I am not diabetic.  But most who develop NLD are.  Hence, the 'diabeticorum' tacked on the end.  I have NL.  No D.

 

     Many doctors had told me that NL(D) was incurable.  That I was stuck with the brownish-red spots for life.  And that was bad, but hardly the worst aspects of the disease.  Because in severe cases as I have experienced, NL(D) can be life threatening due to complications. 

 

     My own immune system has been attacking my skin, making it weak so that the skin can break open or ulcerate.  The ulcers, or open wounds, are slow to heal.  Too, they are at risk for becoming infected.  And last year ulcers did become infected.  I spent month after month on IV antibiotics, only for the infection to become resistant to them.  In the end my local hospital sent me home on a final, higher dose of IV antibiotics, siting that there was nothing more that could be done for me there.

 

     Thankfully, a major hospital was able to do more.  I was prescribed silver-coated bandages, (yes, real silver), an environment that the bacteria cannot withstand contact with.  The bandages have done wonders to fight the infection.

 

     However, infection was only part of the problem.  New ulcers and recurring infections were the risk unless I could somehow stop the attack on my skin.  In the past that had been addressed with long-term courses of oral steroids.  But those had their own horrible side effects.  Further, my doctors had told me that it was no longer safe for me to continue taking the courses. 

 

     I might have given up, but I refused.  Instead, I did all I could to learn more about what I was battling.  After all, I was not born with NL(D).  The disease had somehow developed.  And I thought, what had I done or not done, (compared to others who did not have the disease), that might have caused it?

 

     For me, it came down to diet - despite that so many of my doctors, (and there had been quite a few), had denied a connection between diet and NL(D).  Dr Phil's book on changing eating habits, (sorry, I've forgotten the title - but not the information), was one of a few that helped me make better choices about my diet.  I gave up junk foods and learned to like an abundance of fresh fruits and vegetables, (most of them in uncooked form).  I began to limit, even omit, certain meats, while adding to my diet, such things as nuts, brown rice, cooked dry beans, ect.  I stopped adding shortenings and cooking oils and margarines to my diet.  I stopped eating refined sugars and products that contained them.  I stopped eating products that contained bleached flour.  I limited or even omitted certain dairy products.

 

     My legs used to stay swollen most of the time.  The brownish-red spots used to be inflamed - they would itch and sting.  They would become ulcerated.  Not now.  Not as long as I watch what I eat.

 

     It's been more than 10 years since I was diagnosed with NL(D), and much of the damage was done before I learned that diet changes would help me.  Last year my ex-primary physician was talking amputation because of the resistant infection.  This year my left leg is ulcer free for the first time since 1999.  And my right leg is getting there. 

 

     In severe cases NL(D) can be dibilitating.  I've had times of being wheel chair dependent, times of being bedfast.  I suffer from post traumatic stress syndrome due to all I endured.  But I absolutely refuse to give into the disease process without a battle.  So I've seen some so called, "permanent", lesions (the brownish-red spots) fade, or disappear completely, or at least their centers return to the normal color of my skin.  That, after changing my diet.  Consequently, I no longer believe doctors have all the answers.  I don't believe I can expect some pill or treatment to be so effective that I can ignore being responsible for maintaining my own health through diet and basic care of my body.

 

    

I have struggled with severe RA for the last 4 years,  I was actually bed ridden and unable to care for myself at the end of 2003.  This is also a auto immune disease where my body attacks my joints.  You might also want to get rid of any meats that have been fed growth hornmones or pesticides.  I too was told that my diet would not affect me but the difference is amazing.  As recently a March of this year I was on 3 auto immune suppressants, had strep, mono, whiplash and RA.  I stopped all my meds, do energy healing with Dona Eden and have changed my diet and am feeling remarkable.
 
June 8, 2007, 7:50 am CDT

for my sister

Last October my 35 yr. old sister had two discs rupture in her back, the rupture was so severe it caused a condition called, Caude Equine Syndrome. At the time that it happened she lost all use of both her legs and lost complete use of her bladder and bowels. She went to a rehab place and since then she has regained the use of one of her legs the other is dead from the knee down. The Dr.s tell her they don't know what to expect because of the severity of the nerve damage when the discs ruptured and the length of time it was left untreated by the emergency rm. Dr.s because they thought she was there just for drugs. Meanwhile they treated cuts and bruises while my sisters life was being destroyed. As it is now she walks with two canes, her bowels are horrible she's in constant pain, one dr. says oh its internal hemmoriods which we wont operate on because you have no muscle, the other Dr. says it her prostrate. She has things that are the size of golf balls in her bowels that are preventing her from relieving herself, she has to use a cathader to urinate, and shes lost all sexual feeling (which they say wont come back). Did I mention that shes only 35, and a single mother of two girls. She is devastated, she said to me last night " I can't live if this is what I have to live with" meaning the pain. Shes in constant pain in her legs, they have her on neurotin(sp?) and she says it takes the pain down from 10 to 6. What kind of life is this for anyone to live. I want to help her so bad and I don't know how. We live in different states which makes it impossible to be with here physically. What do I do, has anyone on these boards heard of this syndrome or been affected by it?
 
June 8, 2007, 10:01 am CDT

Dear Fight4acure

Quote From: fyte4acure

Well, I've been doing good with the anti-viral treatment thus far.

 

I've also learned that substance p, which is three-fold in people with CFS, is substantially decreased with massages (light ones, really soft to the touch), and also with Capsaicin, found in hot chili peppers.  Substance p is a neuro-chemical thing that helps the brain detect pain. 

 

Anyway, I'm still working on the fatigue issue.  While I have more energy than I use to, I still get pretty tired to do daily tasks and my job.

 

Hugs!

 

Fight4acure : )

I was touched to hear that there is hope! I have been suffering with CFS for at least 15 years and I am a 34 year old female and single mother of 3 teens in Canada. My youngest is a juvinile diabetic. I was on life support 5 years ago and have been in a coma 3 times since I was 12. (from haemmoraging/blood loss) I spend 75% of my life in bed and in pain and I NEED to get my life back! I would love to hear from you or anyone else with your stories or what worked for you. I can be reached at highmaintenanceone@hotmail.com Thank you. Laurie
 
July 10, 2007, 9:41 am CDT

How I Fought My Illness

Quote From: cvechko

I am angry with the people suing over Shape Up. I used the vitamins. They were the best I have ever found and I am frustrated that I can no longer purchase them. 

  

It's hard to determine what a vitamin is doing for you, however, I could see positive effects. My nails were stronger, but more important to me, the vitamins provided some relief to me for IBM. Unless you suffer from IBM, you cannot understand what a blessing it is to have a product which aids in this problem. I am no doctor, but I assume the vitamins helped to break down the foods I ate. I have taken many types and combinations of vitamins over the years and have never found a combination which provided the benefits of the Shape Up vitamins.   

  

Shame on those who are looking for a quick buck and on the lawyers looking for the publicity and profit. Their greed has taken away a product which had positive benefits for me and I am sure many others. I wish those who feel as I do would ban together so our voice could be heard!  

I agree. Shape-up! was the best thing that every happened for me. It was the ONLY thing that worked for me and now I can no longer get it. Is there no way to find out the combination of vitamins to take to get the same effect since Shape-up for "Apples" is no longer available?
 
July 10, 2007, 11:17 am CDT

Support of shape up pills

Quote From: cvechko

I am angry with the people suing over Shape Up. I used the vitamins. They were the best I have ever found and I am frustrated that I can no longer purchase them. 

  

It's hard to determine what a vitamin is doing for you, however, I could see positive effects. My nails were stronger, but more important to me, the vitamins provided some relief to me for IBM. Unless you suffer from IBM, you cannot understand what a blessing it is to have a product which aids in this problem. I am no doctor, but I assume the vitamins helped to break down the foods I ate. I have taken many types and combinations of vitamins over the years and have never found a combination which provided the benefits of the Shape Up vitamins.   

  

Shame on those who are looking for a quick buck and on the lawyers looking for the publicity and profit. Their greed has taken away a product which had positive benefits for me and I am sure many others. I wish those who feel as I do would ban together so our voice could be heard!  

I too had success with the Shapeup for apples. It was the ONLY thing that EVER worked for me. Why take something off the market just because it did not work for everyone? Is there a way to recreate the same combination of vitamins and supplements on my own?

 
July 29, 2007, 8:53 pm CDT

stiff as a board!

Living with chronic illness is hard enough along with huge expences, I have been living with Scleroderma for the last 10 years.  Scleroderma is an autoimmune illness that hardenes your skin to almost leather and leads to many relating discomforts.  But I am blessed to have 3 children and 2 new grandchildren.   I live each day as a gift because I know it truly is.  I work part-time with our local school system and tutor 3 days a week!  The children keep me young.  Maybe it would be a good idea for Dr. Phil to do a show about how people like us cope and go on with limitations and a smile! 

 

Hang in there everyone...  mvc

 
July 29, 2007, 9:01 pm CDT

thoughts

Quote From: maggie55

I am new here on this particular message board.  I have Lung disease. Interstatial Lung disease.  I am on Oxygen continuously.  I Had Lung surgery about 39 days ago and I'm still not over it at all.  I am still waiting for a good day.

 

My sleep is disturbed terribly, because my breathing is shallow.

 

I am hopeful.  But there are those moments,....the quiet ones....I live alone...and mostly that's good because I don't have to put up with "your always in bed" I can tell myself that. But then I am a surviver and I mentally know that being in bed is not a good thing but I also believe that in my heart of hearts that it is a temporary thing for me......

 

But there are a few moments that I think ....what if ....I live like this....then what??? THis can't be happening, or can it?   It better NOT!!!

 

I have to find it in myself to fight this thing somehow.... the Dr put me on Cortizone and strong dose of it and Lord only knows if it is part of what is putting me down or not.  I've been up all night long.  I sleep at odd times. I can't help this change. I trying to change that as well.

 

It's been a struggle.  I still am in great pain from the surgery.  And am short of breath and tire out easily.  But I am staying strong.  I have great Faith in MY Lord and Saviour.  Hope to get to know you out there and maybe help someone of you as well.  I will be a shoulder and an ear for you too...... love maggie

maggie,

 

I just read your message and have been thinking of you.  Hope you are doing well, stay strong.  Even when you think you have no strength left the Lord always gives alittle more!  Be happy moment to moment...mvc

 
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