Break

I'm taking a break from this blog, if you hadn't noticed. So many times I would wander back over here with blog entries in my mind, but the idea of forming a post just tired me out. I've got so much on my plate! (And so little time!) I'll be back at it soon though...

Busted

I know, I know. It's been way too long since I put up a blog post. I didn't MEAN to take a break, but one was needed. So much going on, and so much complaining I wanted to do. And really, who wants to go to a blog to hear nothing but complaints? I needed an attitude adjustment.

So what's new in our world? Hmm... Let me try to figure out where I left off!

Brian's health. He's doing okay. Right now there are some adjustments being made to his medication(s) and I hope that means he'll feel much, MUCH better. Soon. He had his line pulled (yay!) so that means he only has one appointment every two weeks. It's freed up a lot of his time. But he's had a few more diagnosis (diagnoses?). One being "Pancreatitis". Look it up. It's not fun. But it just made the symptoms he'd been dealing with already worse. The good news is that his blood work has been very positive. All of his numbers (even his kidney function) are in the normal range. All of them! It's amazing. It doesn't mean he feels better, unfortunately, but it means he's as healthy as he's going to get! One of the new medications prescribed to him should help him with the constant nausea he battles, and that should make him more comfortable.

Forgotten Fotos

Every once in awhile I like looking through recent pictures, and usually I have a few surprise "daily life" pictures that I've forgotten about. Here is one from the last few months:

Swimming for the first time since Brian has his tubes put in. The doctors gave him permission to go swimming for a friends' birthday party, but he had to wear a HUGE bandage and had to put up with awkward stares. Ask him if he thought it was worth it ;)

A Little of This, A Little of That

I'll start with the questions that are frequently asked!

"How is Brian?" He's doing pretty good these days. Still some uncomfortable side effects on a daily basis, but they're diminishing enough that he is living life much easier lately. The headaches and nausea are still frequent, but he's not REALLY sick like he has been. He even looks better and, I think I can safely say, I believe he's finally stopped losing weight! Eating has been hard for him with the constant nausea, but I think it's getting better.

"Did you finally get disability?" Yes. We are breathing a very huge sigh of relief. It is so nice to have a bit of income again. I quite literally jumped for joy when we got the call saying our first cheque was waiting for us. And then I went grocery shopping ;)

"Is Brian continuing to get Soliris?" That was more good news we recently got. The drug company that makes Soliris tried to get the government to fund it, but quickly realized they weren't going to make much progress. So they decided to approve Brian for the drug three months at a time again.

"How are Brian's 'numbers'?" His creatinine continues to decline (which is good), his platelet count is stable, his red blood cells finally normalized for the first time since all of this began. Generally, he is STABLE. Stable enough that we got some MORE good news recently. His main doctor decided to pull the line! In just over a week, he'll have day surgery and they will remove the line that goes to his heart. They don't believe he'll need the line for further PLEX treatments. That also means he'll have one less appointment at the hospital a week because he doesn't have tubes that need to get cleaned. And in an effort to keep his veins "clean", they have requested that he only get bloodwork done at the hospital when he gets his Soliris dose. That means he's going from about 3 appointments a week to 1 every second week! That is HUGE for us and frees up a lot more time.

"How are you and the kids?" We're good! I've been working and trying to come up with ways to support my family. I'm getting creative in my solutions to all the financial issues we've had. It's hard work. The kids are doing great and that means I'm doing SOMETHING right in giving them as stable a family life as I can manage!

Thanks for sticking with me through all of this!

No News is NOT Good News

We still have not heard about possibly being on disability. We DID have an appointment today regarding our (nonexistant) income that left us reeling. We're in trouble. BIG trouble.
Decisions have to be made. I'm trying to stop my panicking and just concentrate on getting through Christmas with my sanity intact.

The house is quiet tonight. Lately Brian goes to bed at about 8:00 - 9:00pm. He wakes up STILL tired the next morning. It doesn't make sense. His hemoglobin is at an all-time high. Tonight he put Koby to bed in our bed (with a steamer, in an attempt to have Koby sleep through the night without a hacking cough that's been pestering him for a week now!) Brian fell asleep. He woke up just a bit ago, started to do dishes, and declared it bedtime again.

I'm still trying to pull together a few Christmas events despite the illness going on at our house. Friends came over and decorated cookies today, and tomorrow some more friends are coming to do the same. We look forward to visiting. We look forward to a bit of laughter and joy. And I REALLY look forward to having my mind on something else for a few short hours.

I feel like I have very little to say so I don't post. Life continues to be a struggle for us in more ways than one. Brian has been really sick lately and very rarely has "good days", which makes it hard on all of us. I've been spending way too much time out of the house trying to bury myself in other things but it's burning me out much too quickly. I haven't had enough work, and I hope to change that in the new year. But right now I just need to figure out how to handle all of this!

Brian's numbers have been excellent, so he should be better. Right? But with the daily nausea, migraine-like headaches (also almost a daily thing), fatigue, weakness, dizziness, (etc, etc)... he is unable to function in a work environment. Probably not even a desk job, which is what we thought he might have to resort to. So for Christmas we are waiting on the news from the government as to whether or not he is "disabled", in their standards.

Apart from all of that, I have been learning to deal with my new role as breadwinner. I never saw myself being the one going out and "bringing home the bacon". Can I admit that it freaks me out? The only thing I know how to do, since being a stay at home mom, is clean and cook. I don't feel like I know anything else. I think I need some training somewhere, but I don't know what direction to go. And I still feel like I'm needed at home (if Brian has a day where he's too sick to care for kids, do I just put a movie on for them to babysit them and leave them? What if almost EVERY day ends up being a sick day - which has been the case lately?) I'm trying to keep things as normal as possible for my kids, and I'm failing miserably. Actually, I'm failing miserably at everything right now. With so many balls in the air, how can I not?
Well, this is sounding much more depressing than I thought it would! Which is why I've stayed away from posting! Sorry about that!

Anxious

I could go on and on and on about all the things spinning around in my head, but do any of you really want to read it? And could my fingers even keep up?! Nope, probably not... Brian just came back from his PLEX/Soliris treatment. The doctors decided to do a PLEX even though his numbers were still stable. And they are thinking it might be his LAST PLEX!! Amazing. We'll see what happens when he goes back to the hospital in two weeks. We're hoping the numbers stay stable.

Well, I'm going to go sip a cup of tea and see if I can stop my brain from going into overload. I am physically exhausted from all that's going on in my head. Sitting on the couch and watching some TV sounds like a really good plan...