1/1/16

Happy New Year!




It was a quiet night here for New Years. The boys played XBox, Jim annoyed me, and I played online when the fireworks went off. Even before Jamey was diagnosed with liver disease, we couldn't even be called social drinkers. Alcohol in the house has been a rarity all of our married life. I don't particularly care for how it makes me feel, or the taste.


It's been a quiet holiday all around to be honest. Which isn't really a bad thing considering everything that could be going on. Jamey had an eye appointment on Wednesday. His PCP and Psychiatrist have a feeling that he is having a recurrence of Pseudotumor Cerebri. Chances are that the eye appointment helped confirm that. It should be mild, if that's the diagnosis, but it's already caused damage to his eyes.   He should have his new glasses next week.


This is going to be a busy two weeks. Monday, Ed has an appointment, Tuesday, Mom goes to check out this new program at the center and Jamey has an appointment in Pittsburgh, Friday we're back to Pittsburgh, and then next Tuesday again. Plus, I really hope I can get Jamey back to school as well as getting Ed caught up for the days he's missed. That's the biggest problem with a medical family, between emergency rooms, hospitals, appointments, if a bug is going around, we catch it. And with Mom, that can be bad.


There's a few things I would like to do in 2016. I would love to see Jamey actually graduate, which means getting him back into school. Obviously now, we have to deal with this newest set back. I'm not sure what path the doctors will want to take. He handled Diamox well before, but it can cause liver damage. There are other options, but of course none of them are easy. It definitely means that we'll be dealing with his hepatologist, a neurologist (His headache clinic appointment is in February), his PCP and possibly Pain Management for it. The silver lining is that it may be the reason he's been getting dizzy and it could very well be a reason for some of the pain flair ups. Once it's resolved, things may be better for him. BUT, we believe the previous one was medication induced from anesthesia, his pain medication is an anesthesia. There will have to be a meeting of the great minds who are on his team to figure this all out. It's never easy with Jamey. 


Personally, I have an appointment in February for my eyes Once I have that, I want to go for my drivers license. I will never drive in Pittsburgh traffic, it scares the heebie jeebies out of me, but at least I'll be able to get us to a bus stop without begging for rides or waiting all day. I also want to get serious about this blog. Not only do I want to tell Jamey's story and keep people updated, but I want to help others. I want the average person from the street to have a basic understanding of what it is to be a medical parent, or a caretaker of a parent. I want people to be talking about CRPS, liver disease, ADHD, and depression and anxiety without judgement with a basic understanding of how it really affects people and families.


I want people to understand how very important emotional and moral support is to a family such as ours. And I want people to understand how very easily our story could be theirs. We're your average middle class family. And our path is not an easy one. The hardest part in all of this was finding out who would be there and who wouldn't be. I'm doing my best to forgive those who walked away, but it's not for them, it's so I can move on. I need to focus on my family. There is still a good deal of bitterness, and I'm fairly certain that will remain for awhile. But I can't focus on it.

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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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