Once again, my life was turned upside down. About 8 years ago, my husband had an ischemic stroke in the middle of the night. He had a long stay in the hospital after losing the function of his entire right side- including speech. After 5 hours a day of rehab, he finally WALKED out of the hospital with much of his capacity returned. We continued rehab- and I became nurse BRUNHILDA taking him for walks, working on speech, writing exercises, and movement exercises. Not to mention strict diet changes. I was relentless. He returned to work after several months. He is at 95% of normal now. Then, 2 years ago, he did a face plant in his breakfast and once again, scared me to death.

911 called- taken to overnight in hospital and determined to have possible AFIB.
That same year- he ended up getting a stent due to blockage in his arteries.
Fast forward to last Thursday when he was driving, called to tell me that his left arm was really hurting and the pain was radiating to his chest. He was about 3 minutes away from Urgent Care and was driving directly there. I quickly grabbed what I needed and took off.
I walked in to his room just as Dr was telling him she was calling an ambulance to take him to ER. She said I could take him instead.
He had multiple tests for Heart Attack and spent the night in observation, with additional tests in the morning. They released him Friday afternoon and he sees vascular surgeon next week.
What does this do to a patient with multiple rare diseases who spends a great deal of time attempting to keep stress out of her life? When he had his stroke- I spent 30 nights in the hospital sleeping on a cot in his room and ended up with a terrible case of shingles. Surprised? We shouldn’t be. We are at risk anyway. Add stress- and VIOLA!
Second time- the head plant- more stress- I ended up having several serious autonomic attacks that caused me much difficulty.
Third time- The stent? That I handled just fine because I saw it coming and was not surprised by the cortisol rush of the fight or flight hormone.
This time- well, to tell you the truth- I was not in a good place. I wondered as I walked out the door if I would be coming home alone- forever. I was truly scared- and I don’t scare easily. I seem to handle my own health hurdles better than I handled this. I felt all alone in the world as I drove to urgent care. I did not call anyone because what do you say? What has been the fallout for this patient this time? I slept most of Saturday. Sunday I went to the gym to work-out. I needed to feel alive- so that meant working hard. I’m still trying to come to grips with what happened- and the longer term ramifications.

How many of you have been in the same situation?
How did you handle it?
Let me hear from me you.


  • Sheryl Posted July 8, 2017 1:16 pm

    My answer to your question may not be popular. My husband became disabled in several ways. I managed for 20 years to deal with it. My husband gave up. He refused to get help. It put more and more on me, and I finally had to walk away in order to save my own health. I’m doing much better now. The important thing is I did not leave because of his health and disability. I left because he refused to get any help, and it was literally killing me.

    • mm
      Carol Miletti Posted July 10, 2017 3:42 pm

      Sorry Sheryl,
      This is a difficult decision. Glad you took care of yourself❤️

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