So two nights ago I got the best night's sleep I've had in a long, long time. I was on the vent, I was using an infant face mask from a blue ambu-bag with a Shiley neck band wrapped around it, and it worked! It stay right flush up against my neck., and didn't leak. It didn't touch the trach either. Whoo to the Hoo!!
Then last night I only make it til 2:10 on my vent...the pain was killing me. My trach is totally raw again. I guess I'm allotted one good, pain-free night of sleep every month or so. Lucky me! I'm seriously like falling asleep while I type. All of the sudden I'm typing and I "snap out of it" to focus on the screen and I just wrote, "Because they didn't know Kayla's real Daddy was 6'4". I swear. to. you. I. Just. Wrote. That. In the middle of THIS post! What is going on???? I don't know anyone named Kayla who has a "real" Daddy who is 6'4". Is this what going crazy is??
Remember how I had to re-qualify for oxygen by doing an overnight pulse ox for Medicare? Yeah. I ended up doing 3 of them all told. THEN I had to go to the doctor's office and do a walking test to qualify for PORTABLE oxygen. (The metal tanks). Seriously?? I mean, hello, I have an incurable neuromuscular disease. I was prescribed oxygen by a neurologist. But that's not good enough for you? Kiss my lily white butt. Who do YOU think you are telling me what number my oxygen has to be at to qualify? All this over a few tanks of oxygen, when I already have a concentrator at night?
THEN I had to get re-certified for my "life support" discount at Consumer's Energy. It used to be a percentage of your bill, now it's like $5.00 a month. It's barely even worth it. What a joke.
So I get that done, and then the Airway guys calls me again and tells me I need to do a walking test AGAIN, this time ON oxygen. I was like, "You ARE kidding, right? RIGHT??" Nope. So yet again....Oh my gosh I'm "this" close to losing it. What part of INCURABLE do you not get?? What part of "desaturation below 80" do you not understand? What the hell do they know about MY health? I'm so sick of jumping through these ridiculous hoops!
Then of course, there's the government "extra benefits" thing. I was directed to a website when you can type in all your information regarding age, disability, income, what you need help with, etc. So I made it very clear that I was under 60, yet disabled to the effect that it hinders my lifestyle. I can't always take care of myself, let alone my son!
So after 30 minutes of filling out this form, do you want to know what I qualify for? This is rich: The National Parks And Federal Recreational Lands Access Pass. So I can get discounts on National Parks. You know, many of which you go to to hike, camp, hunt, whatever. Maybe some White Water Rafting down the Colorado? Oh, how about hiking down the Grand Canyon? No, I got it....how about camping in Yellowstone, at 7,500 feet where the air is super thin, and while I'm at it, I'll climb Eagle Peak!
Yes. This is how much sense the government makes. I'm asking for help with child care and home health, and I get offered a free recreational parks pass.
About as useless as %$^# on a boar hog.