Tuesday, April 10, 2012

And so it was a sleeping pill : FSGS Sucks

That FINALLY did the trick. My doctor at Mayo prescribed Ativan.
I'll admit that I was terrified to take it. For some reason, injecting myself with meds is more appealing than sleeping pills. That's a slippery slope. And it's one that Joacim has totally stepped up to.
He took a discretionary day today to stay home with me so he'd be here when I woke up. He's hidden the pills so that I only use them for when it's absolutely necessary. I don't really feel as though I need this monitoring, but I'm sure no addict did either, and I don't want to become one of those.
I'm still all loopy in my brain from all of the uppers and downers yesterday, but it's slowly starting to clear up. I've decided to stop taking the Cellcept (and I'll of course speak with my doctor) but that drug is just too much for me. We don't agree, and I don't have time to afford losing literally days a week trying to recover from a bad spell. There's absolutely no quality of life for me or those around me when that bout of insomnia and mania hit.


  1. Glad you were able to get some sleep. I completely understand what it is like to have to add more medication to treat the side effects of other drugs. When I had the car accident in 2009 I was a ton of medication in addition to the medication for FSGS. I felt like I was loosing control of me and I was swallowing so many pills every day I was a zombie day in and day out. I finally decided to stop taking the pain medication, muscle relaxers and steroids and go the minimalist route which included an MUA manipulation under anesthesia and for what it claimed to do it worked for me. Sometimes the cure is worse then the disease. In this case there are some heavy duty meds they like to try out there for us Kidney patients.

  2. Glad you got some sleep - hopeful that it was restful at the same time. Dropping other meds is a good plan, as long as your doc does not freak. Mine has been easy to work with when we talk about what to add or take away. Good luck, Jenn!

  3. The only side effects I had from cellcept were gastrointestinal. Prograf and prednisone kept me up and wired at first. Ambien did the trick for a while until I became resistant. Eventually I could just sleep again. Actually, now I have the opposite problem, I just want to sleep all of the time.

  4. Hang in there Jenn! Didn't realize you had JUST gotten sleep the night before :) hope the acthar kicks in soon and hope you're one of the ones that can kick the other meds when it does. Know you're tired but fight it my FSGS Soul Sista! As the song plays in my head...the nurses around here already think I'm a bit crazy without busting into random song :)


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