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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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November 16, 2005, 5:59 am CST

syringomyelia

Quote From: faith1106

Hope im in the right place, my nephew has recently been diagnosed with a very rare spinal disease, called idiopathic syringomyelia.  We live in Alberta Canada, this condition is very rare and confussing.  Im writting to Dr.Phil because i believe he has the answers and connections to so many things.  This is tearing our family apart.  We have faced many downfalls but never anything this unkown.  I am writting in desperation , any help, facts, please help. 

 Hi I also have syringomyelia have had it since age 18 it went undiagnosed for 8 years , and now at 36 I am still suffering with the issues it causes.  How old is your nephew?  Does he also have Chiari malformation? I do not but it is pretty common with SM.  There is much information out there on the disease itself but nothing in terms of how to cope with it.  I have had a cervical lamentectomy and durotomy to relieve the pressure on the cord, it did nothing for the symptoms. I am still progressing yet thankfully very slowly even tho the size of the syrinx has not changed. If you would like to write me an email I would be happy to tell you what I know of this disease . The fear of not knowing what this disease is about is far worse than knowing the facts. Keep your chin up and please feel free to write, I will let you know what meds I take and what I have found to help.  

Best Regards 

Pamela aka trixiemay 

trixiemay@charter.net 

 
November 16, 2005, 1:28 pm CST

Idiopathic syringomyelia

Quote From: faith1106

Hope im in the right place, my nephew has recently been diagnosed with a very rare spinal disease, called idiopathic syringomyelia.  We live in Alberta Canada, this condition is very rare and confussing.  Im writting to Dr.Phil because i believe he has the answers and connections to so many things.  This is tearing our family apart.  We have faced many downfalls but never anything this unkown.  I am writting in desperation , any help, facts, please help. 
I was wondering if you have looked up some of this info on the internet.  I have used www.webmd.com myself.  This link may help your family with support on dealing with it, www.enclopedias.families.con/syringomyelia .  I pray that you will get the support and help you need.  Maybe there is some kind of help for different members of your family to help them deal with this in their own way.   Some of the other sites were www.cbc.ca; www.worldhealth.net; www.ncbi.nlm.nih.gov; www.conquerchiari.org; www.emedicine.com/topic359.htm.   Wish there was something I could do. How old is your nephew?
 
November 16, 2005, 8:29 pm CST

B+ kidney

Quote From: rdogold

My kidneys failed in March 2000 after numerous doctors assured me they would not.  I found out later that my kidney failure could have been prevented... my disease process went undiagnosed and then misdiagnosed for 20 years.  It also turned out I was prescribed the wrong medication for my condition (which almost killed me) as well as the right medication in the wrong dosage so it did absolutely no good.   

  

Five and a half years on dialysis has been difficult and debilitating.  I do not do well despite aggressive hemodialysis treatments... four hours per session five days a week.  I have significant complications that have nearly ruined my quality of life.   

  

I went from being extremely active... rode horses, snow skied, ice skated, hiked, biked, played tennis, and raised and showed my own Golden Retrievers... enjoyed active memberships in numerous clubs with frequent social outings and travel... to being a virtual recluse.  I go to dialysis and back and that wipes me out.  My husband (bless his supportive soul and generous heart) takes care of the dogs and house... without him even my beloved Goldens would be a thing of the past.   

  

Now I have osteoporosis secondary to my renal failure that has cost me 3" in height and I must wear a lumbar support and use a walker to prevent falls.  I look like crap.  UCLA gives me the runaround regarding my transplant status and when I can expect "The Call."   

  

The frustration and depression are wilting at times.  The highly restrictive diet would make anyone crazy.  Recently I became unable to bathe myself - how humiliating is THAT?  Except for a very few close friends and family, no one calls or cares.  When acquaintences ask "How are you?" I never know whether to murmur a polite "Fine, thanks" or launch into the 20 minute litany of how awful things really are.  I usually choose the former... after all, who really wants to listen to all my various woes?  Just because *I* have to put up with them day in and day out does not mean I should whine about them to people who can really do nothing to help.  It only makes them feel helpless and me feel weak for not sucking it up.  I HATE (absolutely HATE) being defined by my illness.  Kidney failure is not who I am, it is what has happened to me.   

  

I email Dr Phil and Oprah repeatedly begging them to do shows on rare diseases so people can learn about my condition which I believe goes largely undiagnosed.  No one should have to lose their kidney function when it is preventable!  If anyone reading this produces calcium oxalate kidney stones, go to www.ohf.org and see if you fit the profile.  If so, DO NOT REST until your doctors do the proper diagnostics to determine if you have this condition!  You are your own best health care advocate!!!  You only get one set of kidneys... when they are gone, so too will be any vestige of your former life.  Don't let what happened to me happen to you.   

  

So... anyone out there have a B+ kidney to spare?  Ha ha, that's only half a joke.  Being one of the 65,000 Americans waiting for a kidney sure makes you look at the obits differently.  How many people take perfectly viable organs to the grave with them?  If you want to make a difference, support legislation to make organ donorship an "opt-OUT" system instead of the "opt-IN" system it currently is today.   

  

No one needs to reply to this... I am just venting.  In my dreams I am still healthy but my waking hours are a nightmare I can't wake up from and never will.   

  

Sign me,  

NO WAY OUT 

  

My blood type is actually B+ and i have both of my kidneys but I would no idea how to go about donating it.Sorry that you are having to live with this and will be praying that you can find a kidney. 

 
November 16, 2005, 9:52 pm CST

chronic back pain and cancer

I had chronic back pain for 30 years from a bad disc.  I finally found a doctor who said if I drink 90 ounces of water a day and a tiny pinch of sea salt, it will be cured (for my weight of 180 pounds).  I have tried it for about 5 weeks now and my back pain has been cured 95%.  I can do yard work and clean house and I can even dance! 

  

My aging father was diagnosed with prostate cancer from a biopsy and was told he needed surgery.  His nutritionist told him to avoid surgery, chemo, and radiation, he could give up all food and drink except ONLY drink raw organic veg juice, water (not from tap), and eat raw foods sparingly.  He cured his cancer in 5 weeks with no surgery, chemo, or radiation.  (and got his PSA down to a 1 (one).) 

  

I really want to help others avoid pain like this,  I am shocked and amazed that not many people even want to try this out.  If you have either of these conditions, I beg you to try.  how can it hurt?   

 
November 16, 2005, 9:57 pm CST

Confused about what to do now.

I have wrote Dr. Phil on and off for the past four years and have gotten no response. I have had medical problems since I was born and now I am 31 and still have medical problems. Some of my medical problems include ear problems, chronic sinusitis, chronic allergies, B-12 defiency, bulging discs in my back, scoliosis, carpal tunnel syndrome in both hands after surgery, hot flashes even after a hysterectomy, acid reflux problems even after surgery, fibrocystic disease, severe fibromyalgia, and neumerous other problems.
 
November 25, 2005, 9:29 am CST

Lupus

My name Is Hope Starbuck, and I have Lupus, I found out that I had the Skin lupus when I was 17and I am now 44yrs old. In  1994 I had a major break out over 80% of my body, and I couldn't wear clothes because they would stick to the sores, my daughter which was only 9 then had to take care of me,  and I feel so guilty that my illness took her childhood, I had to go on disabilty because I can't go out into the sun, my Dr. tells me that I really need to live in a cave. Back then they put me on steroids and I gained up to 446lbs which as we all know didn't help my illness out any nor did the meds. They put me on one kind of med that helped me but I was still huge so in 2001 I had the gastric bypass and I have lost 206lbs, then about 5mos ago I started having another bad flair and once again they put me on steroids which trust me I was kicking them about it but I knew I need to at least try  and once again I started gaining again, so I ended up gaining 30lbs back and you guessed it I took myslef off the meds, I refuse to gain all that weight back. So I have to say that I feel like I'm liveing with a time bomb never knowing when it's going to take me away from my wonderful family, however I don't keep thinking about this everyday I do what my body will let me do each and everyday, and I call my friends or they come by to see me and I love to cook and when we have the money I will go and get somethings and cook, I just can't eat much because I also have an ulcer from the meds I'm on so I'm darned if I do darnded if I don't., I know that the good lord is looking over me because he has had many chances to take me and has't yet so I live each and everyday as though i might be my last. MY sweet wonderful daughter is getting ready to turn 21 and she and her boyfriend has given me my 23mo old grandson, and my 2mo old twin grandbaby boy and girl, and I have a wonderful husband which I had met on line in Jan. 2001 and we have been married for 4yrs as of Nov 18, so I try to focous on my family, and go out when its warm and sit on our covered pourch, which won't be anymore this year its only 29 outside rightnow, and talk about cold it hurts my joints so I won't put myself through that. I guess you could say that rightnow I am living through my family because without them trust me I wouldn't care if the lupus would take me away. 

Hope 

 
November 25, 2005, 3:00 pm CST

Fibromyalgia and Chronic Fatigue sufferers

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 

  

 
November 28, 2005, 1:37 am CST

I just told my story in "My Goofy Life" diary. But I tell you all just cuz it's you.

My name is Terrie Schmidt. I have sarcoidosis. It affects my lungs. When I started getting sick it was just before Thanksgiving in 1993. Both my late husband (Bob) and I were sick and it seemed to be the flu. For Bob it was the flu. I would get sick and get better, sick then better. Summer was better than winter. In the warmth of summer I felt better and my lungs seemed to clear up a bit for at least a little while. It took about 1-1/2 to 2 years of this and seeing my primary doctor at Group Health  before he referred me to a doctor in internal medicine to get it narrowed down. After taking a family history, chest x-rays, and blood tests, she thought it might be sarcoid. So she referred to a pulmonolgist  who I met in late 1995. He did a broncoscopy and in January 1996 we knew for sure it was sarcoid. He put me on 40 mg of prednisone daily, which we finally got me down to 2.5 mg. I have been off prednisone since March (?) 2005. Now all I have to do is lose 105 pounds. Other than that and scarred up lungs I am doing pretty darn good.  I am here to see the sun rise and set daily. I can't ask for much more than that......
 
November 28, 2005, 9:33 pm CST

How I Fought My Illness

Quote From: hopie61

My name Is Hope Starbuck, and I have Lupus, I found out that I had the Skin lupus when I was 17and I am now 44yrs old. In  1994 I had a major break out over 80% of my body, and I couldn't wear clothes because they would stick to the sores, my daughter which was only 9 then had to take care of me,  and I feel so guilty that my illness took her childhood, I had to go on disabilty because I can't go out into the sun, my Dr. tells me that I really need to live in a cave. Back then they put me on steroids and I gained up to 446lbs which as we all know didn't help my illness out any nor did the meds. They put me on one kind of med that helped me but I was still huge so in 2001 I had the gastric bypass and I have lost 206lbs, then about 5mos ago I started having another bad flair and once again they put me on steroids which trust me I was kicking them about it but I knew I need to at least try  and once again I started gaining again, so I ended up gaining 30lbs back and you guessed it I took myslef off the meds, I refuse to gain all that weight back. So I have to say that I feel like I'm liveing with a time bomb never knowing when it's going to take me away from my wonderful family, however I don't keep thinking about this everyday I do what my body will let me do each and everyday, and I call my friends or they come by to see me and I love to cook and when we have the money I will go and get somethings and cook, I just can't eat much because I also have an ulcer from the meds I'm on so I'm darned if I do darnded if I don't., I know that the good lord is looking over me because he has had many chances to take me and has't yet so I live each and everyday as though i might be my last. MY sweet wonderful daughter is getting ready to turn 21 and she and her boyfriend has given me my 23mo old grandson, and my 2mo old twin grandbaby boy and girl, and I have a wonderful husband which I had met on line in Jan. 2001 and we have been married for 4yrs as of Nov 18, so I try to focous on my family, and go out when its warm and sit on our covered pourch, which won't be anymore this year its only 29 outside rightnow, and talk about cold it hurts my joints so I won't put myself through that. I guess you could say that rightnow I am living through my family because without them trust me I wouldn't care if the lupus would take me away. 

Hope 

Wow and I thought I had problems!  What I found was knowing I could change the life of one person in a positive way then the chronic conditions would be worth it.  I worked as an intern in a chemical dependancy facitity before becoming disabled and I had a profound statement on my wall. It was a picture of a boy and girl on the beach. he was holding a sea shell to her ear for her to hear the ocean. The quote below said " Finding out who you are is not simple. It takes time for the chatter to quiet down. In the silence of not doing we begin to know what we feel. If we listen and hear what is being offered, then anything in life can be our guide. LISTEN " I would ask how many pray and after the response I would ask how many listen for an answer. What is your answer? Do You listen? 

  

God Bless 

Greenthum 

 
December 1, 2005, 6:24 pm CST

How do you fight endrometriosis

Quote From: iamjenny2

 How do you fight Endometrosis? there is no cure! excpet to wait until menopause!
I was diagnosed with endrometriosis in 1979. I had doctors tell me that it would go away. I had doctors try pills. The pain was becoming unbearable when I was hooked up with an endriconlogist gynocologist. I had surgery in 1984. There was some concern about me being able to get pregnant. I had my first child in 1987 and my second in 1990. After my first child it appeared that the endrometriosis was gone, but after my second child the doctor was convinced it was gone and I have not had any further problems. I am in menopause now (due to breast cancer treatment), but I am convinced if you find a specialist you will be cured also.
 
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