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Words by Julie - Living Life With Paralysis

Just Ask 4

Thanks for sticking with me. This is going to be short as I am almost out of battery. Kids came home from camp today, so I get to see them tomorrow. I can’t wait.

Today is Friday, the first of many here for me at Parkwood. I still have not been given a date as to when I will be ready to go home. So I wait, and guess and ask more questions. I am sure that soon enough they will all be rolling their eyes when they here I have a question. But I am never satisfied with the answers, so I just keep asking.

How long will I need to be here? What does it mean when my legs twitch? When will I will be able to go in the therapy pool? What does my blood work show? Why do I get chilled every evening around 8? When can my PT/OT times be switched so they are not back to back? When can I take off this brace? Why does my hair hurt? Won’t that cause constipation? What are you going to do about this chair that I can not operate? Will I get to use the exoskeleton? Why are my eyes not as good as they used to be? Couldn’t that be my natural flora? Really, I could go on…

If you don’t ask, you won’t know, or you won’t even get them thinking about what ever your question is (even if they don’t know the answer). And if there is one thing that I have learned about being in hospital for the past three weeks – you have to speak up. No matter how uncomfortable you may feel or how awkward the situation becomes. Just ask.

4 comments

  • Ernest Dow says:

    Dr. Bernie Siegel encouraged cancer patients to become "ECaPs" (Exceptional Cancer Patients – more likely to survive) partly by asking questions and generally being ’difficult'.
    "By speaking up and becoming a character or problem patient you become identified as a person and not by your room number or disease and, therefore, are far less likely to have a fatal or non-fatal medical error made while being cared for. The word patient derives its meaning from submissive sufferer. That is not a good thing to be when hospitalized or receiving medical treatment of any kind. You need to be a respant, or responsible participant if you want to heal and survive…
    Difficult patients do not die when they are supposed to…
    When you let an MD, or Medical Deity, determine whether you live or die you are giving away your power…
    That is why patients need to be respants and keep their power and feel free to change doctors and criticize them in a constructive way…"
    (Whole article is worth a read: http://berniesiegelmd.com/resources/articles/from-cancer-patient-to-respant/)
    So – don't be afraid to 'be a pain' and ASK! You are (to a degree) responsible for the level of care you receive. No one is better situated to become the "expert" / prime advocate on your case than you the patient. Certainly not the docs with hundreds of patients in their files (valuable as the docs' expertise may be).

  • BARB Mutter says:

    There is never a wrong question, ask away.. Following your blog faithfully and praying for a good outcome.

  • You're taking care of yourself by asking questions! I think it's great! You want to know so you're prepared and can learn what to expect. You sound great, Julie. Really. How can you take charge of your recovery and gain control over the circumstances (as much as possible)without asking questions? Knowledge is empowering! I'll bet your kids are excited to see you. Enjoy your visit, and keep writing. Thanks for sharing. Following your blog, and thinking of you daily. Darryn sends a big hug too.

  • Hi Julie,

    I am glad you have started to write and hope that it is helpful for you. I found this post very amusing. Of course you would give the advice to 'just ask' anything and everything. You are a science teacher and isn't science all about asking questions? Surely this is a deeply ingrained part of your DNA at this point in your life.

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