lupus/ lung disease

mich77 · #1 Posted 1.29.10, 6:21 AM

I HAVE BEEN LIVING WITH LUPUS FOR OVER 18 YRS OF MY LIFE. SINCE I TURNED 50 YRS OLD MY HEALTH IS GETTING WORST. LIVING WITH THIS DISEASE IS VERY DIFFICULT. I JUST HAVE A HARD TIME MAKING MY FRIENDS AND FAMILY MEMBERS UNDERSTANDING WHAT I FEEL. BECAUSE THEY LOOK AT ME AND I DON'T LOOK SICK PHYSICALLY. WHEN I'M ALONE AND IN SO MUCH PAIN I JUST CRY JUST TO RELIEVE MYSELF.
YOU NEVER KNOW ONE DAY TO ANOTHER AND I DO HAVE FAITH AND I STAY STRONG BUT, WE ARE HUMAN AND WE DO BREAK DOWN FROM TIME TO TIME.

Annie · Posted 1.29.10, 9:20 AM in reply to **mich77**'s post "**lupus/ lung disease**"

Hi Mich! I know exactly how you feel. I was dx'd in '96, so I guess that's 14 years (yikes, I hadn't thought it was that long). I have a good doc who is pretty helpful with the pain end of thigs, but I still hurt all.the.time. I guess there's no way to get rid of it completely. I have come to realize that no one can 'get' what it's like to live with a chronic disease unless they have to deal with it as well. My mom had RA from age 18, so I only knew her that way, but I never really understood the challenges she had until I got tagged by lupus.

I have days that being strong is just not an option. I have a lot of CNS problems and I think dealing with the depression end of it is maybe the worst. So, when it's one of those days, I become some sort of hermit, even in my own house... I just shut down. Not a great solution, but the only one I have that keeps me from being a weepy mess with every word.

Welcome to the boards, you'll be among others who get it.

mich77 · Posted 1.30.10, 6:08 AM in reply to **mich77**'s post "**lupus/ lung disease**"

Dear annie,
thank you for sharing your story with me. It makes me feel better knowing that you understand what i'm going through. I do appreciate. I have ra also and that is so painful i have lived with for years and years. Again just another one of my problems to deal with day in and day out.
Thank you
mich