We’re at the start of a new year and I can’t help but wonder what changes it will bring.
The past year certainly had big changes for our family. Two kids now Cushing’s free thanks to a BLA in May. Bill was diagnosed with Cushing’s and had pituitary surgery, a first step for him of freeing himself of this horrid disease. He’s also unemployed which brings a whole new set of challenges besides monetary.
Both Justin & Jess seem to be doing fairly well eight months after surgery. Jess, I think has done better than Justin once she got over her initial six weeks of vomiting. Both started on adderall awhile back. It seems to agree with Jess pretty well. Although she says that some days it doesn’t seem to work. We’ll have to pay attention to that. The first day or two that Justin took adderall he said it helped him think better. But later he said it didn’t seem to have much affect so he had started taking a second dose halfway through his work day. Still nothing. We talked with the doctor and he started him on vyvanse and so far it seems to be working for him. I hope it continues to do so.
We have yet to find a “local” endo. I say “local” because for us that means three hours away. My intention was to let things go until Bill had his pit surgery in August. They would then of been about three months post op and things might have been leveling out then we could test and see where all their hormone levels are. But things kind of fell apart after Bill’s surgery. So, I need to get on that. At the moment I’m thinking of shooting for April. I hate the thought of trying to get to Denver in the middle of winter. Especially this year with the weather being so unpredictable.
I have found nothing to motivate me to do anything. I mean that literally. For awhile I felt a little lost after the kids had their BLAs. No more testing, etc. I’ve always been somewhat of a procrastinator but now I’m not even sure if that’s what it’s called when I have no desire to do anything. I still need to get out Christmas cards and have a lot of thank you cards to write. I MUST get that done.
I wasn’t really expecting a cure for Bill with his pit surgery but was hoping for improvements. There were a few for awhile. Now he’s pretty much in Cushing’s grip again and it ain’t pretty. The cycling high and low affects us all. Now, I think I wait on pins and needles hoping that with the testing he’s doing he’ll be sent to surgery. Oh fun, another two weeks in a hotel room.
I seem to have lost contact with most of my friends. I just don’t feel like talking to anyone. My life seems to weird to try and explain. I really need to get back to quilting. When I’m working on blocks it makes me happy.
With time on his hands Bill has decided to clean the house from top to bottom – everything. It is something that really has needed done. For various reasons I pretty much gave up on housework a couple of years ago. But then again there are three of us that live here now and I have been about the only one to clean house for the last twenty years.
This housecleaning has made me start to sort through accumulated papers and weed out a lot of junk. Of course I come across some things that just have to be saved. I came across Jess’ infant discharge papers from the hospital. I now know that her blood type is B+.
I have shredded 12 years worth of cancelled checks. It was a little like going through an old diary. But it did help me to remember that we did used to have good times in our family. I need to hold on to that.
I’ve come across old clothes of the kids’ that I put away to save. Not a lot that I really want to save but some I just can’t get rid of. There is a whole stack of clothes that I know I was putting in a closet with the intention of giving away to the Swap Shop. Must of forgotten about them. Need to wash them up and do that.
I’m going to try and get back in the habit of blogging regularly but am thinking that there will be a lot less about Cushing’s this year. I won’t change the title though. Cushing’s has shaped and molded us and has made us what we are. Whether that be good or bad, it has changed us all and brought us to this point in our life. And looking back it had been subtly shaping us for years.