Posted 8/15/2015 4:09 AM (GMT 0)
I've been home for a few days, but still dragging. Glad to be home, but hate that things have not really improved. The PEG tube ensures that I'll be able to stay hydrated and fed, but it's just a band-aid, a really really BIG band-aid.
LOTS of followups, testing, and a planned inpatient stay the 2nd week of Sept on the epilepsy unit. Surgery is a guarantee, but until the testing is completed, what exactly needs to be done will not be known. On the advice of a number of Drs, testing can be done at my local hospital, but my Drs at Duke need to see, and read, the results themselves. Luckily they use the same computer program, so it won't be a problem. I'll be honest, I'm scared. I am the .0001% that has the side effects, has the complications, who does not respond to treatment. I know it, and my Drs know it. I'm scared-and I'm mad. It's just not fair. I know there's no such thing as "just" RA, but why can't I at least have more "normal" RA? Drs are also thinking I may have CREST syndrome-not a fun addition to the mix.
For now I'm just doing what I can to get by day by day, and be the best possible mom for my kid. I hope it's a good enough mom...