I realized I haven't posted in a while and thought it was time for an update and a big thank you! I am in a much better place both mentally and physically than when I made my very first post here, and a lot of the mental stability is because of the support and information I gained from reading through the forums here! Thank you all for that!
As for how I'm doing these days. I am a lot better, not 100% but improving. I ended up having to change primary care doctors due to insurance issues but that turned out to be a blessing in disguise. My new doctor has been phenomenal at getting my care switched over to his office. Even better he knows a good deal about APS and is working with my Hematologist to make sure I'm getting proper care. I also changed Hematologists as the first Hematologist was not a proper fit, so I sought out one that has experience treating APS. He recommended my INR be raised to 2.5-3.5. At my last appointment he tested my Cortisol levels and I should know those results later this week. He also filled out the paperwork to get me set up for self testing yesterday and I faxed that back to the company, now I'm waiting to hear back from them on what my insurance will cover and what I will have to pay out of pocket.
I started Plaquenil in January before switching PCPs and the new doctor supports this treatment and is continuing me on this as well.
My branch retinal vein occlusion is healing well and my Ophthalmologist said the monthly monitoring can stop so I do not have to see him again until June unless something new comes up.
All in all things are starting to calm down, and with less anxiety, and stress, life I think is going to start becoming more normal again, at least somewhat!
I will be adding a Rheumatologist to my team in March as well. My Hematologist wants me reevaluated by him fully given I have a family history full of lupus and RA and other autoimmune conditions. I was tested back in Dec. but came back negative and my old Primary said that was enough for him to declare my APS Primary at that point. Not to mention I think he will be a beneficial member of my team given I have an autoimmune issue that is causing me joint pain and other issues.