That’ll Cost You

It’s been awhile… New symptoms abound! Lots of stressing. We just moved 1500 miles to be closer to family while my husband is moved overseas for two years. That’s SUPER awesome. I’m not dealing with that well and I’m absolutely terrified over how the kids are going to react to this. They usually adjust faster than I do but this just seems different. I don’t think many people understand that I’m sick – I have a chronic illness (or illnesses) and I will never “get well soon”.  I have my good days and bad days but I will never be how I used to. “Invisible illness” is used for a reason. I don’t understand how people don’t see though. I don’t look healthy – just check out old pictures. I can’t stand for long periods of time or do a lot of activity (walking, bending over/crouching down – hard to avoid with munchkins, putting my arms above my head, and driving is hard for me) – so instead of announcing these things to the world, I just sit down a lot and I don’t do activities that will require a lot of spoons. Most days, I struggle to get out of bed. It’s like once I go to sleep, my mind and body forget the state that they’re in and waking up is a bit of a shock. Finally, I force myself to get up, suck it up, and my new, abnormal self slowly settles back in and doesn’t feel quite as overwhelming.  This is where much of my anger and how the hell am I going to do this comes from. Our oldest son is going to start preschool and wants (and needs) to play some sports. This means waking up early and somehow popping out of bed, feeding the kids, getting us ready, and getting to whatever activity. Doesn’t sound like a struggle for most, I suppose, but you don’t get it unless you get it. Maybe it seems like I *complain* a lot but this is my blog and my outlet. More and more, I’ve learned to keep my thoughts, fears, etc. to myself – what’s the point in sharing? I have my handful of people that either understand because they have similar conditions or understand because they know me so well and for that handful, I am more than grateful.  Now about moving… That’s what I came to rant about in the first place. Getting your medical records – WOW! I don’t know how most medical systems are set up but the one that I was in in Washington makes you pay $1.37 per PAGE (with a slight discount after so many pages) for your clinic visit notes – the things your doctor writes about you. So if you’ve had quite a few visits, lucky you. You can get your test results for free and CDs of your MRIs, CTs, and ultrasounds for free… But if you want to see what your doctor has actually said about YOU during appointments? Well, then you get to pony up some big bucks. Don’t worry because it’s free for them to fax the clinic records to another doctor, you just can’t see them. God forbid you want to take charge of your health and make sure that what’s been written is accurate (good chance it’s not if they spend 99% of the appointment staring at the computer). I said screw it, I don’t want to see what most of my physicians there wrote about me… I’ll get angry and stress about making it right, because that’s what I do. 

Silver lining…? I had an appointment today with my “new” primary care doctor here. She had been my provider for many years before I moved away and I like her. She certainly wasn’t expecting me to come in with a huge black binder and a multitude of WTF diagnoses, but she kept up and, without any questions, wrote referrals for all of the specialists I need to see right now: GI, endocrinologist, electrophysiologist, neurologist, and geneticist. She is also willing to write a referral to Mayo clinic here if I decide to go that route. UW in Seattle referred me to Mayo neurology but they weren’t able to even start scheduling appointments until sometime in October (4-6 month wait after that to be seen). My referrals have a few clerical issues that need to be corrected, but after that, hopefully insurance will approve everything. Most are physicians that were highly recommended by other patients through the various online support groups I’m in. Here’s to hoping these specialists can piece it all together. 

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