Sarcoidosis

[livingwith]

im a 37 old mother of 2 children with sarcodosis [sarcoidosis] of the lungs. i was told that i had it in 10-07 when i went to the hospital with fever, coughing, for flu. since then i have surfing the internet finding out more about this disease that i have.
What i found out has been a shock to me of what sarcodosis can do to your body. Ive been feeling more of the this disease can do to you. From the pains, shortness of breaths, skin rashes and the tireness. Im currently going to start seei...Read the full article

[ThrityYears]

Hi,
It is hard to take all of the information in when you are told you have sarcoidosis. I remember the day very well. At that time there was no Internet to go to and very few doctors would even talk to you about it (or know about it). Thank God the Internet has opened up the books and ways to learn.

For me it has been up and down without to much trouble. I say that because I tend to ignore it or at least try to ignore it. My wife and I decided that we wouldn't let this rule our lives, and have lived that way. That is not to say I don't have bad times with it. But when my wife had cancer in the mid 90's (that's 1990's) we had another challenge to deal with, and since then too. We now both ignore most of what we can and go on with life. We have 4 children, all grown now. So it was either deal with them and their lives or succumb to sarcoidosis. I am much happier having lived our lives with our children ( and maybe a little through our children). Happy hormones help the symptoms of sarcoidosis I am convinced.

What I am trying to say is DON'T let sarcoidosis define who you are and what you do. I've listened to the stories, seen the worst of what it can do, taken the treatments and diagnostic tests and I can say that the people that let it dictate there living are the ones that get worse. No there aren't any scientific stats in this comment, and I don't claim healing or anything close. I'm just saying plan to make your life better by living your life like it means something to your children and your significant other.

This thing may kill me some day, but in the meantime I am going to have fun. I will combat it with more than medicine. I will kill it if I can, but I am not bemoaning my fate of having it. Cancer is a killer and many people beat it, why can't I live with sarcoidosis? The answer is I can and will do well.

So, go to the doctor and listen well to what is said. Read up on what all the information means from your tests. Make sure you understand what they mean and how you can help yourself feel better. Learn what the drugs you take (if any) do to YOU, not what it does to others. Prednisone makes many gain a huge amount of weight. If this is you learn to regulate how much you eat, how many times. And exercise (walking 5 miles a day helped me, since I only have 1.8 liters of lung available). All of these are difficult to do with children in tow, but you have to make it a life with everyone. I think hiking all over the hills in the countryside helped us all. And mostly I forgot my limits till they stared me in the face (conked out once running the bases in a baseball charity event). So know your limits and respect them.

Have fun.