Leaderboard

Oh, Ambersmommy! I am so sorry to hear what you've been through and continue to go through. We went through a multi-year PANDAS journey of our own, and I had many, many days when I had your same thoughts. It is so tough, and with these really treatment-resistant cases, the feelings of helplessness and isolation are nearly as devastating and debilitating as the disease itself. I hear you on the destruction of your finances and the lifestyle you once had, too. Are you alone in trying to handle all of this? Do you have family or close friends or some sort of support system (a faith community)? This forum helped me through a LOT over the years, but we are (mostly) distant and not physically there to hold your hand or rub your back or take your DD off your hands for a few hours to give you some respite. Are there any charitable groups or local agencies that could take some of the weight off of your shoulders, if only for brief periods at a time? I won't launch into "have you tried this" or "have you tried that" here, as I don't think that's what you want or need to hear. You feel you've exhausted your resources, it sounds like, so all of my thoughts/suggestions are leaning toward replenishing yourself. I want to tell you not to give up, that there is hope and there may yet be healing, but also that if you empty yourself with no opportunity for refilling or tagging someone else to substitute in for you now and again, that's an unsustainable system. I'm just hoping there's something between surrendering your DD to the state or surrendering your life to terminal dysfunction. Sending much light your way!