How do I accept what is happening??

Question

I was diagnosed with Pulmonary Sarcoidosis in 2005. It is hard but I have been dealing with it but it still stresses me out totally. I am 34 & have been on oxygen for 2 years now.
Over the past couple of weeks, my sides started hurting really bad, I actually felt like I was having a heartattack Thursday morning. I went to see my doctor and asked if he would xray my lungs since it had been awhile. (I was really dreading the outcome!)! He informed me that the Sarcoidosis has spreaded to the outer edges of my lungs. It was bad enough that it covered the parts of my lungs around my espagus, which causes the trouble breathing & pain. The pain gets so bad that I have to vomit. (sorry). I take plenty of medicine but it doesn't really help when I am having a bad flare up.
So how am I supposed to accept that this is getting worse. There is no cure for this disease. I also have Pulmonary Hypertention, which I was told only a lung transplant would fix. Can anyone give me some advice???

Answer 1

I have COPD and I am on 02 also. My disease is to the point that lung volume surgery would not help. My lungs are too full of emhysema damage all over and not just in one place. My only hope is a single or double lung transplant.

I have experienced the same feelings you are having. You can pray and talk to God. That helps. I found that, for the most part, support made me depressed. They some times have good information, but the depression was not worth it.

The more you know about your disease (s) the more you are in control and not the disease. Learn everything you can and continue to research. Don't allow your disease to take over your life.

What do you like to do with yourself? Pursue your hobbies. Do only the things you enjoy doing. I am doing the things I never had time to do before. When my breathing is intolerable and I cannot move, I lay in my bed and concentrate on breathing by doing the pursed lip breathing and thinking. I use that quiet time to get into myself and think of what I want to do next. I am writing short stories, a book, reading and I actually have an invention I am working on.

I found out I couldn't watch the clock. I couldn't have a normal life because of my disease and the things it does to limit me. BUT I could still find some enjoyment in my life. I had to or I would have ended my life. I love to lay in bed on Monday mornings and watch everyone going by to go to work.....How funny as I lay in bed and drink my coffee. I never get bored. I enjoy my own company.

I am telling that no one can TELL you what to do. You have to discover that yourself. You are going to lose friends and maybe some relatives that just cannot deal with the gravity of your disease. That's O.K. too. Others will replace them. Everything really does happen for a reason.The reason might not be clear now, but you pay attention, because it will when the time is right..........

You read my answer again and think long and hard about it. Remember, I have been there and I am still there. There is no advice anyone can give you. That is the best advice you will ever get.

Answer 2

I was diagnosed with Sarcoid about 5 years ago. I was on Prednisone
for about 4 months. It cleared it up. Well now 4 years
later.....BANG....Back again. Coughing, Weezing, Bad Lung x-
ray...You know the drill.
I've been back on Prednisone for only 1 week and starting to feel
better.

I started drinking this product called Tunguska Blast. It is an
immune booster. I've been taking it for about 30 days and already
feel better.
I just signed up for the program. Here's the website.
http://www.cyberwize.com/4413133

I know you can sign up to sell the product, recruit people and all
that if you want. So if you are interested in it..you can read all
about that. I don't know too much about that part.

But the only thing that I can tell you is that the product is making
me feel better. Since I'm on Prednisone, I am always looking for
stuff to help my immune system. I also went to the drugstore and
bought some fish oil pills...and vitamin E..I heard that helps too.

This is such a journey..so when I find ANYTHING that helps...I like
to share.

God Bless!
BJ

Answer 3

You are so young to have to endure such pain and helplessness. The only advice I can think of to help your situation is to learn the art of self hypnosis. This really helps and could possibly cure you if you believe in a higher being. If it doesn't help it definitely won't hurt you but it will give you inner peace to deal with what you are facing. Read all you can on self hypnosis or guided imagery and then put it into practise. Don't give up. It is like learning anything new you get better the more you practise. Try to relax at least once a day I know if you do you will eventually master the most inner healing relaxing technique on earth!

Answer 4

It might seem strange but I actually wouldn't go to see a support group. I think you should just try to do as many of the things you enjoy doing, have fun, and be with the people you love. Joining a support group will only make you commiserate in misery with other people and may make you feel worse. I think you should just try to follow the recommendations of your doctor. I don't know much about this diseases and what kinds of treatment options there are, but it may help you to seek out a few doctors opinions.

Answer 5

I don't mean to be presumptuous, you are enduring things that no person should have to suffer but a meditation practice might help.
I would look for support group too
Good luck

Answer 6

I am so sorry that you are having to deal with this. I'd look online and see if there's a support group near you.