I'm sorry to hear things aren't going well. This road we are on is not easy to follow. I sure feel better after venting on this website.When I get frustrated I find that I feel more optimistic after a day or so. But the optimism wears away. I think that I just need to finally accept that this disease may define my physical life, but I also need to remember that it doesn't affect the rest of my life. I hope that a sense of optimism and hope comes to you.

the most difficult part of getting better is the waiting, and waiting, and waiting, but please know that in the end it WILL all be worthwhile. In the meantime, your job is to realize that and try to accept it, though it's quite difficult. All will be well.
Blessings,
Kim

I'm very sorry to hear that you're still sick and that you received less-than-happy news. It's not easy to feel like you're going around in circles or that you're starting from scratch. Someone here once suggested keeping a log. Maybe you should try that. It helps a person feel like they are being proactive with their health. You could journalize things like what you eat each day, how you feel, what meds you took and the dosage, your activities, etc. It might help you to find a pattern.

Also, you might want to do research on your symptoms, or search for natural treatments (such as vitamins) that could help your symptoms without interfering with your meds.

I don't know if these ideas can help you, but things like this make me feel more empowered and in charge. I will say a prayer about your situation. Best wishes to you, okapi2.

I hear you about 2 years and what to do...I have had my PM/ILD since 1/2010 and will need to be on my meds until 2/2012 I'm told for now - so maybe have a discussion with your doctor as to a treatment plan - the doctor I saw at JH told me do this for 3 months, get these tests, take this meds until 2/2012 and then see how you are, if not better, then we will do this. Hope that helps
Love Hugs and Prayers L-)

One of my favorite lines from a co-worker (who has since quit). We would sit and talk about all the tough things about our jobs. One day she turned me to and said "You're right, this job does suck". So my answer to you is "You're right, this illness does suck".

One thing I have learned over the years with this illness is my attitude about it is cyclical. I started off sure I was going to fight and beat it but over the years, I have learned it is more about long term survival. That is a tough pill to swallow.

I'm sorry your doctor wasn't helpful and gave you news you didn't want to hear. That is really tough. But know that there are lots of options and lots of things that are still good and to be happy about. So try to pamper yourself a little and work to think of some positive things. Just in case you need some help, here is my recent list: I get the guilty pleasure of reading books now because I have to rest so much. I have also learned to ask for help and accept it graciously. I notice the little things in life so much more. There are three of mine that I needed the other day to keep me going. Think of a few things for you too and try to focus on those to lift your spirits.

Then, if your doctor isn't being helpful, find a new doctor. It is so important to have someone that will fight with you. Yeah they sometimes need to be frank and honest with us but it should be in a compassionate manner.

Hang in there and know feeling down once in awhile is normal for everyone...sick or not. Things will work themselves out in time. And we are all here and know what you are going through so lean on us to help you through.

Here's your prep talk. Knock it off.
I completely understand where your coming from.
My journey started last year in May with lung involvement, then down hill slide with what they say is PM.
I want you to vent, because that's all we have at times. DO IT!
I need to know more as to what your on, ect.
What other types of things have you done or not done.
We are all in the same boat and until we come together to realize that "yes" the meds precisely prednisone has helped us reduce our inflammation, it is still a drug.
Lets figure out what works and doesn't work together. We need to share more about our blood work and what the doctors are telling or not telling us. Remember they are only human, and are limited to what this disease is all about.
We are living examples that with Gods trust and fellow PM'ers, we can figure this thing out.
Rhonda

Thank you all for the support!

I feel like my attitude about this situation changes daily, or even hourly. My doctors and my parents are trying to push me in all kinds of different directions, and I just get overwhelmed!

But in the end, after calming down about it, I return to my normal way of thinking. It's rough, it does suck, and it complicates things. But once I do get this under control, that will be one major accomplishment under my belt.

I gotta keep looking at the bright side, at least I have a diagnosis. This time last year I was still unsure.

Incoming input can be overwhelming. My Mother (who is a social worker) can work me into a big messy froth within a few minutes. I've learned to stop her when she gets going and try to stop the input that is so unhelpful. Yes I am open to talk but don't upset me (like she does).

I'm glad you are feeling a little better today. Big hugs to you.

Yes I certainly do know things can be overwhelming but do try to keep positive....may not help the disease but it will help with the emotions!!!! Not all the time but for the most part at least for me....hopefully for you too!!!!

Hugs!!