Susan G

I’d like to say something to the newer members of our group (and by newer I mean anyone who has joined in the last 2 years or so). I love Facebook. I love that we have this group and other Cushing’s support groups to hold folks up as they walk this diagnostic and recovery journey. If someone has a question, it usually gets answered within hours if not minutes. There’s a wealth of knowledge among us “oldsters” simply because we’ve walked this path; usually for much longer than we’ve wished.

However, the reason we have this knowledge is because we immersed ourselves into the medical intricacies of Cushing’s (out of necessity). Facebook wasn’t around, but MaryO’s site was — and it was crammed full of information. While the forums don’t satisfy the current need for instant gratification, while waiting for answers to questions we spent time looking through past questions. We searched the forums for others who had similar questions to ours. In the process, we learned things that we didn’t even know we needed to ask! For instance, someone might ask a question about the dex test. Another member answers but also talks about the IPSS. That led to a search on that test, and that led to and search on doctors proficient in the procedure. It also led to some “horror” stories — which kept some of us out of harm’s way.

I can’t stress enough how important it is to have this kind of learning process if you are dealing with Cushing’s. You have to be fully invested in your own recovery, and one of the ways to do that is to become an expert. You can’t do that here. You can get some information, you can get some hugs and warm fuzzies, but you simply cannot learn enough on this FB forum to get yourself well.

Do yourself a favor. Go register for MaryO’s site (it’s free). Make a few posts so you will have full privileges (the search feature primarily). Play around with the advanced search feature. Go to the testing section and just scroll through the different threads. Pull up a couple of interest and skim them. Same for the treatment section. And the recovery section. Before you know it you will be very comfortable with the site and you will be soaking up information that you didn’t even realize you needed to know.

We will still be here to help you through … but know that, for myself, I will often not answer your question directly but will give you a link to the specific forum that addresses your issue. It’s not that I don’t want you to have a quick answer, but I want you to address the issue in depth so you will really understand the “whys” of the answer!

(On Facebook)