Week 4


Bad News:

I’m miserable and the last couple days have been excruciating. (Surprise surprise right? ;)) Monday I had 3 seizures and my new medication came in for Tuesday and Wednesday which I still had two seizures each day, but they were less intense. I have been more tired though (didn’t know that was possible) and struggling to stay upright because the meds are pretty strong and knock me out. It’s also been making me pretty nauseous and irritable.  Im due for another dose right now… yay… lol. I had to stop taking the CBD oil I started on the weekend because my seizures were getting worse with it and I was getting regular migraines to add to the mix. (Our new air bnb had new offgassing furniture so that could also be part of the issue, but we were running out of days to expiremint if we wanted the stem cell procedure this week so we picked the hard drugs haha.) We spent my spare energy over the weekend buying hypoallergenic mattress covers and air purifiers, but I’ll be moving to a new room tomorrow because it’s still not been enough to help me recover.

Good News:

The Doc has decided we will do the stem cell procedure even though my seizures aren’t controlled. She said she was hopeful but it’s just so unpredictable if and when they will be controlled.  We are so so hopeful everything goes well tomorrow during the procedure so we can finally head home!!! This is such amazing news because on Monday evening she said as of my current state she did not feel comfortable with doing the procedure (insert another melt down here) so thank you to everyone who had me in their thoughts and prayers!!!!

It’s going to be a bit of a gamble because the procedure may set off a seizure as well as my sciatic nerve pain from my bone marrow biopsy as it runs close by where the stem cell extraction is done. Additionally the medication she requested I take I can’t get allergy free in time for tomorrow but everything about this trip has gone far from planned yet I’m still kickin so I’m optimistic!