It's been a tough week. After a very successful BC HopFest 2017 (if you don't know about that, check out BC Hop Co online and come next year!) it's time to recharge. I've taken time to sit and let me sore feet restore. I have started a knitting project and caught up on some shows. On Oct 3rd was my 4th Brainaversary. Sometimes it's hard to believe that it's been 4 years since our family started on the "brain journey". There are still journey's ahead of us. We just don't know exactly what they are. We are flying a bit blind right now.
This week has been tough for a variety of reasons. I'm tired of fighting to advocate for myself, sounds dumb to some, I feel like we've been fighting for a voice in the medical system for too long. I've got all the specialists and not one quarterback. So frustrating.
On Friday, it was super hard. I was in tears nearly all day. I'd been to the GP to deal with an odd pain in my belly (like that's new!!), a shooting pain that had been nagging me since my June surgery. Damn. It shot straight up to my shoulder and threw me into a panic about what it could be. The GP was concerned about it too. Spleen? Stomach? Believes it to be a Hematoma that had "let go" and has caused major issue in the surrounding area. Pain now is a constant reminder to slow down and be kind to myself.
I had already been reminded of that after I'd been referred to the BC Cancer Agency following my June surgery. News wasn't good on that mass and now the investigation was on for any other issues that there may be. Ovarian complications are now being looking at, just not fast enough!! Why is a "short term follow up" (as suggested by the radiologist from August) quickest in November?? Why can't I get in for an MRI in Abbotsford sooner for the follow-up that I need? What is so wrong with our system? Don't answer that, we all know!!!! Hence the bad day! I would love to be boring, for just one day!
I'm curtailing the things that cause stress as that helps with the excessive pain, or at least I'm able to deal with the pain easier when I'm not also dealing with stress.
I'm not allowed to give up, I'm not allowed to want to give up. I am allowed to not be ok!
You are definitely not allowed to give up but you are allowed to be pissed about the state of things!! Eventhough I can’t be a help with the delays in the medical system I can be a listening ear. You are surrounded by love I hope that adds to your already amazing strength. Love Nicky
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