Yay me! Posts two days in a row! It’s a beautiful day, Jim and Dad are at the club, the two boys are quietly playing video games and I get a chance to veg out. Dinner is on, laundry will wait until tomorrow. It’s all good.
We have a quiet week coming up. It will give me time to grieve the season of The Walking Dead. And maybe give me time to catch up on Once Upon a Time. I made the not so startling realization that most of my TV viewing habits include the paranormal in some way with the exception of Grey’s Anatomy. And why I am so into a medical drama while living my own is a complete mystery to me. Don’t ask me to explain it, I have no clue. On the upside, iZombie comes back this week as well. So, I have more to look forward to. Of course, it comes on while we’re in Pittsburgh, but that’s why the Good Lord invented recording.
I’ve been working on making my own blog graphics using clip art I have found in various places on line and templates from Pixel Scrapper. It’s a slow process. I can tell you that the ladies at Pixel Scrapper and other digital artists are amazingly patient and they have to have much better organizational skills than yours truly. I tend to get bored easily. That is one of the reasons that I’m fairly sure that the boys’ ADHD came from both sides of the family. I’m always honest with their teachers that they get their organizational skills honestly. I have none. I usually tend to fly by the seat of my pants rather than any sort of set up. And thankfully, it has actually helped me in this long journey with Jamey. Being able to to go with the flow has been crucial. There’s an old saying that the branch that does not bend breaks. Well, of all the times that I felt like I was just about to completely break down, my ability to shift gears mid sprint has helped me greatly.
Of course my randomness has driven many a friend nuts. My family seems just to go with it, and it’s always scary when they can figure out exactly what I mean when I completely mess up what I’m trying to say. I just can’t help what pops in my head at any given moment and it usually does end up coming out of my mouth. I am grateful that I am hardly ever purposely cruel and that I choose not to talk about others in any way that I would not say in front of them. I just honestly have no filter from brain to mouth most days. There are times that I find that I have to bite my tongue though. I think we all have those moments.
At Jamey’s last hepatology appointment. He was determined to demand a liver biopsy. And his doctor was just as determined against it. I understand the reasons. Jamey is a surgical risk with how advanced his liver disease is. They would rather wait until the need out weighs the risks. He has another sonogram next month, and I checked his tumor markers, they haven’t gone up any and they are still within range. The cancer scare last year still has him spooked. As well as his mother. As long as the blood work keeps coming back half way decent, I’m ok with just imaging. And if the sonogram shows something, theres always MRI and CT’s. We know the damage is extensive. Poking another hole in there won’t change that.
I just realized that I am doing exactly what I hated the most when trying to find out what was going on with my parents health. Giving out a smidgen of information at a time. It infuriated me especially since it ended up being important things I needed to know. “Your pulse is getting high again, Mother” on the first day out of the hospital “Oh I was in defib in the hospital too…” Or my favorite was when the IV equipment arrived five minutes before she called to tell me that she was coming home on IV antibiotics….
In our case, I’m usually hit with so much all at once, that it takes me a few days to weeks to mentally go through it all. When he was first diagnosed with CRPS, my first thought was finally a diagnosis. I think it was a full month before I read up on how devastating that diagnosis really was. And when I first read the words “early cirrhosis” I immediately burst into tears. It was over an hour before I could actually tell him. I literally felt like a failure to him.
His diagnoses fit. CRPS causes swelling and tissue damage. He was diagnosed with it in his liver and bile ducts. Until we get the CRPS under control, theres no hope in getting the liver damage under control. The portions of his liver that are not cirrhotic can regenerate into healthy tissue. So, that explains why we focus on the pain more than we do the liver. In a CRPS flare on a limb, some people develop ulcers and sores. Rashes and the limbs can swell to twice their regular size. This is all happening internally for Jamey. If his bile duct swells and bile is trapped inside the liver, it causes even more damage. I suspect that is what is happening when his gGTP rises. Which is fairly often. And with the amount of flares and the length of time he’s in a flare, it makes sense.
People seem to be critical when I try to make sense of it all. But when there is no explanation to what is happening and how it happened? It’s the most frustratingly cruel feeling on the planet. I’ll never be able to answer how it started or why, but I still want answers. I have Mini Mister to protect.
Well, my beloved children are attempting to get into the frozen Easter candy that I have stashed. Yes at nearly 16 and 21. So, it looks like I have some yelling to do. I do try to make things nice for them on the Holiday’s, they just don’t always cooperate.
Happy Sunday! I hope you all are enjoying your days!