Rainbows and Black Unicorns

Tag: Caregivers

  • the same

    Life is still the same. Amy’s still fighting infections and my anxiety is controlling my life. Amy looks green, her urostomy bag is noisy sounding like a waterfall at times and it smells. Antibiotics? Probably the cause.Me…I hear all the noises and worry that this isn’t normal or healthy. She refuses to ask anyone about…

  • infection

    Another one! Bacterial. It’s a bad one.When the results came in I started to shake. PTSD much? Amy looked pale yesterday and her urine smelled like ammonia so, I’m not surprised. A bit of a panic trying to find someone to give her a prescription because the urologist doesn’t work Friday so she went directly…

  • not coping

    The grief is palatable. Email from urologist said he wanted to wait and possibly never do surgery. He would try removing nephrostomy tube and doing a different procedure but even that sounds questionable. It’s one thing to wait for something that would hopefully make life easier but now it feels like this is as good…

  • addicts

    We went to the mountains for a few days. It was nice. The weather and scenery was outstanding. We did a bit of letting go of past hurts and disappointments. I wrote a note to the people who have hurt me outlining how their judgement has affected me. I ended each note with a positive…

  • too much anger

    Today, I’m feeling very sad. I get no support anymore. No one has any idea what life is like for us. It’s been months since anyone asked me about me. I mean really asked me. Not, “how are ya”, crap where they expect me me to say “fine”. I’m not fine. I’m not even ok.…

  • more again

    Amy was hospitalized for 8 days. Had surgery on right kidney tube and she’s still recovering. A fistula was discovered and we are waiting for a surgeon to return from holiday. He does robotic surgery and might be able to fix the leak. Her back pain has been very uncomfortable and worrisome. The nurse has…

  • Sadness

    I wish I could record videos. Lack of ability and hating the way I look on camera prevent me from trying. Amy’s sad today because she’s still so weak from sepsis. The drugs might be zapping her strength or the residual damage from sepsis might be the cause. She’s sad that she can’t do the…

  • Gifts

    Can I make a few suggestions around gifts for the patient or caregiver? I am so grateful for everything people have done for us and I know it’s with the best intentions. But sometimes traditional gifts are not the most appropriate such as flowers or plants. As a caregiver the burden falls on me to…