Well, my trach continues to heal, and this morning I actually felt GOOD for a while. First step in getting over the "pheresis hangover." Funnily enough, I have said several times that sometimes when I wake up in the morning I feel like I have a hangover but didn't get to have any fun the night before. (Many of my MG friends agreed with that!)
Now for those of you who have HONESTLY never had a hangover, imagine the worst day of your life, you got 1 1/2 hours of sleep, you're nauseous, have a wicked headache, you feel like a thousand cactus prickers are in your eyes, and your mouth feels like you've licked shag carpet all night long. You just feel miserable. Almost like the flu, but you can't throw up and you don't have a fever. (This is all what I've heard anyway....) {wink}
The day after pheresis, for me, is like that. Some people have it and jump right out of bed and feel great right away. Um, hate you.
No, really, some folks feel fantastic right away. I, however, do not. This time it's taking a couple of days, but we're getting there. I really did feel pretty darn good for a couple hours earlier today. Now I'm getting kind of tired, but I've been busy all day, as usual.
The other HUGE relief is that I'm done with my Medicare appeal...You know, the one where they are telling me I don't qualify for a cough assist machine because I have to meet the following criteria: (and I quote)
"1. They have a neuromuscular disease (followed by a bunch of diagnosis codes...don't even get me STARTED on that...) and
2. This condition is causing a significant impairment of chest wall and/or diaphragmatic movement, such that it results in an inability to clear retained secretions."
Um, SERIOUSLY??? Have these people HEARD of MG? This cough assist helped me stay OUT of the hospital when I had pneumonia this past fall. It was PRESCRIBED by my doctor. Airway Oxygen already appealed the ridiculous decision because Medicare didn't pay them. So now I had to file a "Reconsideration Request" of the "Redetermination Notice." Excuse my vulgarity, but what a bunch of bullsh!t!! Imbeciles.
Like I have nothing better to do with my time...
So yeah. Now I'm just waiting on the SECOND "Certificate of Medical Necessity" (one was filed with the appeal.) to go with my letter, their form, and my 5 attachments. UG.
So that's me in a nutshell today. Crazy, busy, and relieved.
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
Monday, April 2, 2012
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