Thursday, January 30, 2014

What A Difference A Day Makes

I hope you guys can forgive me for being so reactive about Thomas WBC test and all that the pharmacy told me. In the moment I was in a complete panic because I'm desperate to get Thomas well and after finding out about his counts I just lost it. I did end up taking him in to get the tests redone. I practically dragged him out of bed to go which he wasn't happy about but I couldn't sit on this for even a moment. After the test the waiting began for the results. It's amazing how slow a few hours can pass as you wait for important news. I had planned to have a relaxing day doing nothing but things that make me happy (I'm currently having tons of fun with Facebook slot machines) but after the call about Thomas WBC's I couldn't relax, I couldn't do anything but worry. In time, I heard back from the pharmacy and it was good news. His levels were back above the line but still low but we are able to continue through another week of clozaril. All I can say is thank God because doing anything less than that was going to kill me.

When I got to the pharmacy, which by the way is a new one for me because I had to switch to them for Thomas because they are the only ones in my area that dispense clozaril, the pharmacist met with me. I'll probably say this a lot but I'll start now with this. These people are absolutely amazing. They know their stuff about meds (especially Thomas'). Anyway, the pharmacist talked to me about the clozaril and asked how Thomas was doing on it. I told him that things weren't changing and he told me to be sure to let the doctor know about that. I told him I did but that I was desperate for it to work because I was watching my son slip away. This man, this pharmacist, took time away from his work to talk to me about clozaril and how it works and how long I can expect to have to wait for it to begin working. He was dismayed to learn that it had been 6 weeks with no good results but he reinforced that this drug takes a long time to work. There it was again, someone else telling me I have to wait this out. I have heard it a thousand times now but I am unable to draw any comfort from that at all. The pharmacist, though, was very considerate of my feelings and tried so hard to comfort me. He didn't have to take the time to do that but he did. He and his employees are to be commended for their amazing kindness and abilities to go FAR out of their way to educate me and help me get things orchestrated with this medication.

Apart from all of that, I have to say that Thomas had a pretty decent day yesterday. He's obviously still struggling, I see it in his face and movements but he did have the curtains in his room opened yesterday, he was patient with me when I popped in and when I texted him from my living room chair little things here and there and sent them to his room (LOL yes, texting from one room of the house to another) he answered them right away albeit with an "OK" but he answered immediately which made me happy. He ate dinner out with the family and even managed to laugh a little bit at the show we were watching so for yesterday I felt I had my boy back a little bit. He said he is now going to bed at a decent hour after a talk I had with him about that and this is at least reflected in his social media postings which all now take place before 10pm.

Once again, today is a new day. I slept last night, my husband has brought me my fruit and coffee this morning and there is nothing on the schedule to get done today. My goal is to attempt to have the day today that I wanted to have yesterday and that is a quiet one. It's amazing what a difference a day makes. Here's hoping today is a better one.

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