So I get in the car yesterday and Kathleen tells me the neuro called and the recent blood tests showed the antibody that indicates Myasthenia gravis. Well... that's pretty great compared to ALS, right? So for the last 24 hours I've been floating along, believing that my mom is going to be somewhat sick, but will have a normal lifespan and not end up paralyzed. It was an awesome feeling.... thinking about all the futures where she feels better and gets on her feet again. Then BOOM... her second EMG proved that it isn't MG but is, in fact, ALS.... ALS confirmed. Fuck fuck fuck fuck fuck fuck fuck....
While it's not as hard as the initial blow because I have remained guarded when it comes to "it could be this" after 3-4 progressively shittier possible diagnosis', it still takes the wind out of me to have what I thought was a little good news turn around and punch me in the guts. I'm still inclined toward 'take me with you because I can't hack it alone." For Julia.... I'm not going to off myself, don't worry. It's just where my head goes when things get too tough to imagine bearing.
I'm still going to continue looking for every possible treatment that will help my mom keep her sanity and strength for as long as I can manage it. I am going to push her into any trials and treatments that have promise. I just need her to stick with me and not give up. I know she'll tell me when she's had enough, but hopefully something will click and we'll find that miracle.
She has guilt over being sick and that makes me have guilt over her being sick which makes her have guilt over being sick.... it's a sick cycle. I'm trying to keep it together for her benefit, so she doesn't feel bad for something she has no control over, but I'm dying inside. I can't handle a world without her in it.
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