Topic : How I Fought My Illness

"Aids Want Get Me Down"

By: Sheila Pearce

I am a wife, and a mother of two,

I'm living with Aids, what else do I do?

Curl up in a ball, and forget it is there?

Thats what I did, for seven long years.

It was definetly, the wrong thing for me,

For now I have Aids, and no longer HIV.

But now I'm on meds, it's under control,

The Doc said I'd live to see my boys grow.

As long as I take them the rest of my life,

I can continue being a Mom and a wife.

I've lived with this now, for many years,

Hiding my fear, and hiding my tears.

I just keep on living everyday as before,

Smiling and joking, and doing Mom's chores.

It want get me down, I am willing to fight,

For a happy future, with stars shining bright.

This life that I'm living, means alot,

Whether I have the Aids disease, or not!

I have a husband, and two teenage boys,

To keep me busy and to give my life joy.

  writen: November 17, 2001

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

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

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

My letter to Michael Moore should explain it:

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.

• 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

• Total Cholesterol: around 160
• HDL: around 60
• LDL: around 90
• Trig: around 60
• Ratio: < 3

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.