Recently I've been having a funny old time with my PsA, treatments and medical consultations and I've spent quite a bit of time focusing on what hurts, what isn't working, what side effects and who isn't giving me the best advice.
Negative information used positively moves me forward in my PsA life journey.
Trying to assimilate yet another odd day before I went to sleep last night, I reflected on how incredibly lucky I am to have found the LWPsA site and the whole amazing community of people here who share their experience and knowledge of this disease in such a supportive and informative way.
Without all the knowledge I've gleaned and the pointers to other sources of expert information I would likely not even be where I am today with my treatments and disease control ... let alone informed enough to know when I'm being short-changed, what I should continue to challenge, treatments to pursue or expert opinions to seek. I actually have a lot, a great deal, to be grateful for.
I feel the same, Jules. A couple of years ago, I was in a very bad way. My doctors seemed unconcerned, while I felt that I was getting worse. I was in the dark, and I was scared. I found this site, and being here encouraged me to research, seek advice, and be proactive.
I remember at the time being challenged by some of the members here – they questioned my decisions, and encouraged me to stand up for myself. It wasn’t always comfortable, and the disease itself, which crushed me with fatigue and pain and depression, made it difficult to stand up and take decisive action. With the encouragement of my companions here, and the knowledge that I got through this site, I finally gathered my wits, and engineered the care that got me on the road to disease control.
Was it always comfortable hearing what the others here had to say? Not at all. Some people here really challenged me and what they said even gave me some sleepless nights and made me cry. Was their opinion, even if it made me uncomfortable, worth considering? For sure. In fact, thanks to my companions here, today I consider myself to be as well as I could possibly be given that I have severe and destructive PsA. I am as well as I am in large part because I was challenged, pushed and supported by people here. For that I will always be grateful.
Ditto, Jules and Seenie! I couldn't be more thankful for LWPsA--I probably would never have gone on Enbrel if not for the kick in the pants I got from a couple mods and members last year about this time!!! I was pretty much the opposite of everyone else here--I kept trying to deny and defy the disease--I never thought I'd let it get the best of me, but yet it did because I was getting depressed--it was overtaking me physically and emotionally. I was at my wits end when I found this site, but not ready to give in and "subject" myself to the horrors of taking a biologic (so I thought). Now, dealing with damaged feet, back and hands (and who knows what else is lurking) if I hadn't found this place I would definitely be way more of a wreck than I am!
Thanks, everybody, for all your kind help!