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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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June 30, 2008, 2:11 pm CDT

Living with Polycystic Kidney Disease

I was born with Polycystic kidney disease. At 3 months old Doctors found a mass on my kidneys. Mom took me to Saint Judes. They thought it was cancer. Doctors ran a bunch of tests. Found out it was PKD. Doctors said I would not live to be a year old. One night Mom heard beautiful music and saw a shadow near my crib. It was an Angel watching over me. Lots of people Prayed for me when I was little. I was 19 years old when my kidneys started to fail. I was put on dialysis. I was on dialysis for 15 months. I had my kidney transplant in April 17,2006. I was pretty scared adult. Right now my new kidney is 6 years old and going strong. My  Immunity is low so i have to watch out for infections and all that nice stuff.When I saw Cojo on Dr.Phil it made me relize that theres other people in the world thats on dialysis and waiting for a transplant. And I  would love to encourage them or help them in some way. Maybe Praying for them will help them God knows their names and their needs.

 

Signed:PKDSurvior

 
July 5, 2008, 5:35 pm CDT

keep

Quote From: voodidit

For many years I have had daily headaches and problems with balance, strength and double vision. In early 2003 I was finally diagnosed with Multiple Sclerosis which finally put a name on what was going on.

Later that year after a MRI on my neck and spine I found out I also had Thyroid Cancer. I had a total thyroidectomy in Oct. of 2003 and it has been a long road.

The surgery has caused me to be hypocalcemic because my remaining parathyroids will no longer regulate my calicum levels. So in addition to all my MS meds I have to take mega doses of Calcium daily in order to keep my levels decent.

I have had 2 rounds or RAI and just recently finished 8 weeks off my thyroid meds prepping for a scan to see if I would have to have more radiation. Luckily this time around I can out clean, so now it's wait until next year.

Along with all my health issues I became a grandma twice in the past 2 years, first in Sept. 2003 and again in September 2004. I was also forced to take a medical retirement from work and am now on disability. Did I mention I am only 38?

Every part of my life is stressful, because of all my running back and forth to the doctors and my problems caused by the health issues it's almost impossible for me to even take care of my grandkids.

I do try to keep an upbeat outlook on everything, after all things could be a lot worse.

Hey there,, just wanted to pop in and say 'hey',,, :-),, i know how ya feel,, its verrrrrrry hard to keep up with the grandkids and everything when you are going through soooooooooooo much CRAP!!,, but,,, like you said,, you try to keep an 'upbeat' outlook,, and i reallllllly Do believe that is half the battle!! ;-),,,,,,, i am at stage 4 now , cancer,,, but just got a second opinion, and things are looking verrrrrry hopefull !! i have two grandsons, ages 4 and 7,, do you have any grandaughters???,, i always wanted a girl,, but it just didnt happen,, LOLOLOLOL,,, oh well,,there is still always hope to see one,, ;-),,,,,, if you need to yak feel free to call me,, i am a verrrrrry good listener :-),,,,, brenda waldie,,,, ***-***-****
 
August 12, 2008, 8:31 pm CDT

sarcoidosis

Quote From: lb1966

 I also have sarcoidosis and am on a treatment called the Marshall Protocol.. Please see www.marshallprotocol.com and www.AutoimmunityResearch.org. There really is a known cause and a cure for this deadly disease! 

  

LeAnne 

Thanks for the info, I have had sarcoidosis since 1983 and am still on predisone regiment.

 
August 15, 2008, 1:40 am CDT

Scoliosis...........................

Quote From: hannah610

Hello, a couple months ago, I found that I had scoliosis. I had 60º, and I had to do a surgery to correct it. I'm fine, right now (after having long nights, with exausting pain), but I want some advises about things that I should do, or things that I shouldn't do... I'm only posting this, because I don't live in USA (I'm not english, sorry about the writting mistakes...), and where I live, there aren't many people with this problem. So I hope, that in such a large country like that, somebody could give me an advise!...

I'm very young, and I started my teen life, with a big scar in my back.... Thanks!

I'm sorry that I have no advice, but I can offer support. Some doctors have suggested that I too have scoliosis but it hasn't yet been diagnosed fully. I have been too busy with my lower back problems. I have had 2 failed spine surgery's and 1 reconstructive surgery. I have been disabled to do severe chronic pain for over 7 years now. The pain is getting worse every day. I am a female, live in the USA, and am 44 years old. Just to give you a small picture of me.

 

I wanted to tell you to not worry over that scar over your back. First of all, it will fade in time. Believe me, I have been cut open 3 times and my scar is barely visible. You had your surgery while you are still so young and that will give you an even better chance for your skin to heal much nicer than mine did. I was also hit by a car when I was 15 years old. My left leg was smashed between the car bumper and the motorcycle that I was riding. The muscles in my calf were cut completely in half. Because there was such a huge amount of muscle tissue that sprang into my lower leg, just above the ankle, it caused the skin to split open and left me with a scar and a large bulge in that area with an indentation in the middle. Did you understand that? I know it's hard to picture and for me to describe. Anyway, it left my leg looking weird, especially to me at the time since I was still a young teenager.

 

But you know what? No one has never even noticed it, and of they did, it certainly never stopped me from getting any dates or from being considered very attractive. So please, don't worry too much about that scar. Yes, you might think twice about a two piece swimsuit, but really, so what? If I lost my new 30 pound weight gain since I became disabled, I would wear a two piece anyway. Walk with confidence and hold your head high. As long as you don't allow it to bother you, it won't bother anyone else either.

 

Try going onto Web Md for scoliosis. They should have some points there about what to do for therapy. Keeping your stomach and back muscles are the most important things that you can do. Believe me, I know! You just need to find out what kind of exercises to do that will not hurt your back. Even just walking is good for you. I would also suggest exercising in water, like a swimming pool. That would be very low impact and give very resistance, the kind that you need.

 

I wish you the very best. And always remember, as long as you're not in pain and as long as you keep those muscles worked, and I don't mean you have to have a perfect six pack set of abs either, just toned, you will be fine and should count yourself lucky.

Jewels

 
August 27, 2008, 9:50 pm CDT

Diabetic Complication Many Have But It's Never Spoken About

My letter to Michael Moore should explain it:

 

Hi Michael -

I was hoping in the massive amount of email you get that my Subject line might stand out.  I was completely blind sided several weeks ago when I went to my doctor with what I thought was lingering stomach flu.  After eating some radio active eggs to determine their rate of digestion and an endoscopy, I was informed I had "Gastroparesis."  Sounds sort of benign like something you could take some antacid for, doesn't it?  It actually means stomach paralysis and it is a complication of diabetes.  Apparently 25% of diabetics will get this. 

You hear all the time about diabetic complications such as blindness, kidney failure, numbness in the feet, but you never hear of this.  Essentially it's like having a constant case of stomach flu.  I was shocked when I Googled "Gastroparesis."  Pages and pages of people on feeding tubes, removed stomachs, constant vomiting and doctors who turned them away and said there was nothing to do.  Even more shocking is most doctors don't even know it exists.

I have had Type 1 diabetes for 30 years (got it when I was 11), and I think it's incredible that I've never heard of this.  I'm a legal secretary, and I also do PR for rock bands and Mike Caro, "The Mad Genius of Poker."  I also am raising a son with autism by myself, so I don't live under a rock and know how to do research.  I feel like I'm in the Twilight Zone.  How is  it possible to never have heard of this.  Also, many patients have to educate doctors about what the illness even is because many have never heard of it.

Essentially all of the nerves and muscles in your stomach die and the food can't pass through so it sits like a big lump and takes forever to digest.  Nothing is done, and never will be done because people don't know about it.  Many of the people who would like to bring attention to this disease are too sick to do anything about it. 

It would be like going in for a routine eye exam and the doctor saying, "Yep, you're going blind.  Oh, it's a major complication of diabetes, you didn't know that?  Sorry, nothing we can do."  Essentially, instead of my eyes not working, my stomach doesn't work.  People think you should eat some fiber and get over it.  Stomachs that don't have nerves or muscles don't digest fiber so it sits there and has to be surgically removed.

G-Pact is the only organization fighting for this cause, and the people who run it really need help getting the word out.  My letter/story to G-Pact and my email to Bret Michael's management are below.  Thank you for your time.
 
September 4, 2008, 6:14 pm CDT

The immunity

Quote From: pkdsurvivor

I was born with Polycystic kidney disease. At 3 months old Doctors found a mass on my kidneys. Mom took me to Saint Judes. They thought it was cancer. Doctors ran a bunch of tests. Found out it was PKD. Doctors said I would not live to be a year old. One night Mom heard beautiful music and saw a shadow near my crib. It was an Angel watching over me. Lots of people Prayed for me when I was little. I was 19 years old when my kidneys started to fail. I was put on dialysis. I was on dialysis for 15 months. I had my kidney transplant in April 17,2006. I was pretty scared adult. Right now my new kidney is 6 years old and going strong. My  Immunity is low so i have to watch out for infections and all that nice stuff.When I saw Cojo on Dr.Phil it made me relize that theres other people in the world thats on dialysis and waiting for a transplant. And I  would love to encourage them or help them in some way. Maybe Praying for them will help them God knows their names and their needs.

 

Signed:PKDSurvior

Congratulations on the operation sucess.  With a new kidney, you have to really take care of yourself.  I have heard of a product that directly increases your immune system.  The product has been proven to naturally help the body provide cell defense.  The best thing about this is that its not another pill to take, which can danger your new kidney.  This product is call Immunocal.  It can be compared to milk that are given to infants.  You can visit www.3minutedecision.com/fred for more detail on this product. 
 
November 14, 2008, 12:57 am CST

The four essential steps, that I've taken, that help me live with Heart Failure

I am near 70 and have had Congestive Heart Failure, Persistant Atrial Fibrillation, Chronic Tachycardia, Chronically High Blood Pressure, Immune System Dysfunction, Insulin Resistance, Pre-Diabetes and Asthma for over twenty years.

I have learned four essential steps for lowering my blood pressure down to very healthy levels, reducing my heart rhythm problems, improving my heart failure, improving my Immune System/Neurohormonal System problems, and at the same time improving my general health. I have no medical training or education, so I don't know how much these four essential steps would help others, but I'll document them here anyway.

The four essential steps are:
  1. Being on a healthy diet. I prefer frequent, small portion, high fiber, low calorie meals, based on the Glycemic Index, but other healthy diets might work well for others.Because of the profound improvement in my health, I intend to stay on this small, frequent, high fiber diet the rest of my life. I love it!
  2. Finding out, and avoiding, the things (triggers) that cause over-activation of the Immune System and the Nervous System. Heart Failure, and other heart problems, result in over-active Hormonal Systems, that attempt to increase the pumping ability of the heart by pouring out excess "helpful" hormones. Immune System Triggers and Nervous System Triggers cause even additional hormones to be produced, causing unhealthy stress to our systems, and resulting in a worsening of heart failure, high blood pressure, heart rhythm problems, and many other health problems.These "helpful" chemicals (hormones,cytokines) are not so helpful when they are over-produced and are constantly circulating in the body. The over-production and over-circulation of hormones, cytokines, etc., can cause damage to organs, glands, joints and nerves, and make you feel sick as a dog, with fatigue, anxiety, mental confusion, headaches, etc.. Medicines, like Ace Inhibitors, Calcium Channel Blockers, Beta Blockers, Renin Blockers all attempt to block, or inhibit, the overproduction of hormones. The more "triggers" of the Immune System, or the NeuroHormonal System, that can be avoided, the less medication that is required. Make sense? For instance, if you can avoid triggers that cause even more over-activation of the adrenal glands, you might thusly require lower dosages of medication that attempt to block the Adrenal Glands, like Beta Blockers.
  3. Exercise, exercise, exercise!Exercise is important, but until my health got better through proper diet and avoiding triggers that cause Heart Failure to get progressively worse, I could only do very limited exercise. Very slowly and gradually I was able to increase physical activity and exercise. Many times I would overdo it and suffer from difficult breathing, chest pains, over-sweating, increased heart rhythm problems and fatigue.My current exercise schedule, spread throughout the day, is about fifty pushups a day, 300 lifts with 10 pound weights per day per arm, 450 steps per day, per leg, on my stepper; and power walking one hour per day in two 30 minute sessions. Not bad for a elderly guy suffering from Heart Failure for over 20 years, huh? One benefit that I didn't expect to see is a significant improvement in my varicose veins. Who'd of thunk!
  4. Taking the correct meds on the correct schedule.
    Finding out which medicines work best, and what is the best time to take them, is complex and extremely difficult. I've taken, and suffered with, many different heart/blood pressure medications before I figured out what works best for me. I currently take 6.25mg Coreg twice a day; .25mg Digoxin once a day; Warfarin 2.5mg once a day, Flovent and Flonase. You have to admit, that is a very low level of medication for treating all of my chronic diseases.

Heart Failure is a progressive disease. That means that it usually gets worse with time, not better. I was limited prior to age 60, but I felt that I was holding my own. Entering my 60's, my health got much worse, with worsening fatigue and weakness, constant chest pains, mental confusion and constant problems breathing, especially when lying down. I was forced to sleep sitting up to limit my breathing and heart rhythm problems.

Now..... close to my 70's, my health is quite good, although I am still limited by my disease(s). My heart is damaged, and while improved, my heart will always be compromised. The most important lesson, I've learned, has been that, even during one's 60's, heart failure does not necessarily have to lead to death and morbidity.

When my symptoms worsened, back in 1998, I started taking my blood pressure many times per day. It wasn't until 2004, when I incorporated all four essential steps, that my blood pressure, and health, started the long journey back towards better health. At that time, I did not really know if I would continue to improve, or continue to get worsening heart failure.

These were my annual "average" blood pressure readings from 1998 through 2008.
  • 1998: 152/97, readings=1016; Standard Deviation= Systolic of 15 and Diastolic of 9An average of 152/97 for the ENTIRE YEAR! Is it any wonder why I was getting worse!?
  • 1999 : 146/92, readings=3599; Standard Deviation= Systolic of 14 and Diastolic of 9An average of 146/92, each and every day, for the entire year. Better than 1998, but still a serious health problem!
  • 2000 : 145/92, readings=3322; Standard Deviation= Systolic of 12 and Diastolic of 8
  • 2001 : 147/92, readings=2375; Standard Deviation= Systolic of 12 and Diastolic of 7
  • 2002 : 150/96, readings=1423; Standard Deviation= Systolic of 13 and Diastolic of 8
  • 2003 : 151/96, readings=1032; Standard Deviation= Systolic of 13 and Diastolic of 8
  • 2004 : 146/90, readings=2065; Standard Deviation= Systolic of 14 and Diastolic of 8
  • 2005 : 139/86, readings=2526; Standard Deviation= Systolic of 12 and Diastolic of 8
  • 2006 : 136/79, readings=3269; Standard Deviation= Systolic of 12 and Diastolic of 7
  • 2007 : 126/74, readings=2720; Standard Deviation= Systolic of 12 and Diastolic of 7An average of 126/74 for the entire year. There is hope that I can survive these nasty diseases!
  • 2008 : 121/72, readings=1902; Standard Deviation= Systolic of 12 and Diastolic of 7

My Cholesterol Numbers are also great, without ever having to take statins!
  • Total Cholesterol: around 160
  • HDL: around 60
  • LDL: around 90
  • Trig: around 60
  • Ratio: < 3

As long as I adhere to the four essential steps, I don't have to worry about my blood pressure. My health is also slowly improving day by day. I feel younger, stronger, more alert, and with more energy, although I never expect my heart to fully recover. But...... not meaning to sugarcoat my story, if I did not, or could not, continue to live this very healthy and limiting lifestyle, I would definitely get progressively worse and die from my diseases. I long for the days when I could live a normal life, but I will never see those days again. Hopefully, my ongoing battle to survive Heart Failure will be a much longer and healthier one! __________________
20+ years of CHF, AFib, HBP, Immune Dysfunction, Insulin Resistance; all much better due to diet, exercise, and avoiding NeuroHormonal/Immune System Triggers. I love COREG!!!
 
November 15, 2008, 1:14 am CST

Living w/ Fibromyalgia and More

I'm 44 and do not know what it is like to not live in pain.  I'm in pain 24/7 with Fibromyalgia and I also have most, if not all, of the other disorders/disabilities that go along with it.  I've read so much on the web I have information overload and looking for others who have tried and successfully found things to help. 

 

I've never done anything like this before, but since I've been on so many different medications and am now on the newest at the highest doses, I need to find something else to help with the pain.  I have a long story, but I was diagnosed at a very young age and have been in pain since I was about 2-3 years old.  I do have a lot of stress in my life with my health, my husband's health, my mother and mother-in-law's health, my two adopted children who have multiple behavior and emotional disorders (and they're both teens), among other things, sometimes it's hard to deal with the pain.  I do have support from my wonderful husband and family, as well as from above.  Although there are days I can hardly move and think I may not be able to get out of bed, I get strength from my mother, who has suffered with the most crippling form of Rheumatoid Arthritis for 22 years, and from above. 

 

I'm not going to sugar coat anything, living in pain 24/7 all my life really sucks!  If anyone out there has things they've tried that work or help, I'm all ears.

 
November 19, 2008, 7:28 am CST

Living with ALL Luekemia

I have a daughter that has had ALL Leukemia from the time she was 11/2 years old. She has been in remission for 7 years now. but it was and is still today a LONG process to get it under control. She has had lots of spinal taps, ports, bivouacs, ear tubs, cemo, ECT... she has found out that she has sort term memory loss, because of the cemo. and today she has foot troubles. If i my start from the start,. my daughter was 11/2 years old, I was at work all day. when I got home, she was Very tiered, pale, and she couldn't go 5 steps without getting tired, and bruises lots of them. I took her to the DR. her regular DR. was out, so we had to see the step in DR. He looked at her and gave her some antibiotics, and said " I want to see her in two weeks " I said, why is she so pale? can you check her iron? he did. it was Very low. he gave her iron pills, and said, " I still want to see her in two weeks " and sent us home. After getting home, and giving her her meds, i looked at her and said, something is just not right!. So I took her to the emergency room at the hospital. After hours, and blood work, the nurses started putting IVs in her arm, and told me that her DR. will be here to talk to me. and she was admitted to the hospital. I was thinking at that time that she just had a Very bad cold, flue,? well, up in her room, her DR. came in and tried to explain that she has all the signs of Leukemia, but we will have to get a spinal tap to know what kind she had. which we would have to drive two hours away for that in a better hospital. well, we got there the next day, she had the test, Dr. told me it was ALL Leukemia. and that is how I found out. and the sorry goes on from that to today. 
 
December 8, 2008, 6:58 pm CST

Fibro

Quote From: milby6130140

Yes I get S.S  & I ave other health problems too .
I have been living with fibromyalgia for nearly 30 years as it continues to get worse and I get weeker.  I still wake up every day and work full time.  Read the rest of my story in a previous message (I think on page 30 or so).  Right now I don't have any encouraging words per se, but don't give up.  I have seen tons of doctors and am on many medications.  I also have most every other illness related to fibro.
 
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