I just can’t seem to keep up with everything today. I managed to get some things accomplished but their significance is debatable. There is so much that still needs to get done that it’s really overwhelming.
Lizze isn’t doing so well today and really worried about her.
I’m trying to manage her and Gavin’s declining at the same time and it’s honestly a full time job in and of itself. I could easily spend most of the week just making phone calls and driving them to appointments, trying to pursue answers and treatment options.
Unfortunately, there is way more going on in our lives to allow that kind of dedicated attention to be paid to that endeavor.
What I need is either a few more of me or a full time employee, that I can delegate some of these responsiblities to. Seeing as neither of those things are going to happen anytime soon, I’ll still find myself buried, with no conceivable way out.
This really sucks. 🙁
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rjones22 Thank you. I understand. So many of our discoveries were accidentally found and we are sooooo lucky they were. We haven’t made much progress this week but we are working with her case manager and we did postpone the therapies that were scheduled for this week so we could pursue a new direction.
Thnks again. 🙂
When does lizzie go to the doctor next. it makes me feel bad for her that she is so sick and they cant make her pain and misery stop. maybe her case manager can make some of those calls for her to get in to the dr. i dont know about gavin though. i have been where you are going to every doctor under the son (over 100 no lie) to figure out that my son had the rare autoimmune dieseae he has and it was by chance that he was in the hospital and doctors were freaking out in hall and were discussing what to do with my kid (and me because I was so overwhelmed, exhausted etc) and the Chief of Rhuematology for that hospital stopped to listen (and we were not on the Rhuematology floor) and it took him just talking to them, looking at the short record from that hospital, one look at him and he knew what it was immediately and followed up with blood test because he knew what he was looking for. Behcets is what he has and you cant tell by looking at him what it is but this dr was able to put the right 2 and 2 together and came up with 4. he is also the dr that goes around to give the conferences on behcets. it was a miracle because i didnt know what to do. after 3 years of being told my kid was crazy and then that i was too. I am not mental hospital crazy but crazy none the less but only because of the ptsd and trauma i went thru to protect my kid and get a diagnosis. i have to get over it but i cant because i am still living in the middle of my kid not being able to live with any quality of life. our catch 22 is that their is meds for behcets but he cant take them because he had cancer before and he would have to good of a chance of getting cancer again if he took the meds and since he is 21 now and he said (and i believe him) that if he got cancer again he wouldn’t treat it. I don’t blame him a bit but if it was in my control i would hook him up to whatever. I know this weighs heavy on you Rob. please tell lizzie i said hello and that i love seeing pics of her beautiful children.