Patient Wisdom

1. When a medical professional tells you something isn’t going to hurt, prepare yourself. I’m not sure if they honestly believe it or if they simply think that if they say it it will be true, but either way they’re wrong. Words like pinch, sting a little, and pressure are doctor favorites. While these words are typically a rather inadequate description, they are all words you hear a lot of as a patient and after a while you come to a point where you hear the words and just think, “yes, yes, pinch, sting, whatever. Just hurry up and get it over with. It’s nice outside.”

2. If you want something done, call the nurse. If you call your doctor directly, you will wait days, weeks, months for a response. (Unless they tell you to page them, then you’re in the money.) But if you call their nurse, you will receive a prompt response from a prepared doctor. Actually, this may just be a reflection of life in general. If you want a guy to do something, tell the woman in his life 😉

3. Specialists are an odd breed of human and in general seem to suffer from an inflated sense of grandeur. Now don’t get me wrong, I am incredibly thankful that these specialists are out there and working hard to find us answers. But in my experience they have been rather difficult to communicate with (ranging from no response to emails filled with so many misspelled words and such bad grammar that deciphering was nearly impossible) and seem completely unaware that there are others out there with differing opinions. The specialists I work with tell me completely opposing views, each issuing said view as the voice of the medical community, making it rather difficult to wade through all of the opposing “facts” to find actual answers. They also seem to believe that no one can do anything as well as their hospital, which always leaves me wondering if I really need to fly all the way across the country for them to take a few tubes of blood.

4. Warm blankets are one of the unexpected joys of life as a patient. For those of you who have yet to enjoy the splendors of the warm blanket, they are exactly what they sound like, blankets pulled from a warmer that the nurse tucks snugly around you. Pure delight I tell you.

5. The internet can be an invaluable tool or an abyss of fear as you navigate the medical world. Tread carefully and with as much common sense as you can muster. When I was preparing for my first bone marrow biopsy, I was terrified. I spent hours researching the procedure, reading others accounts of their experiences, and even watched a youtube video of one being performed. Thanks to all this research, I was totally prepared when I went in and knew exactly what to expect, making it a much less scarey experience. On the other hand, I once watched a video of childbirth and that left me permanently damaged. Like I said, tread carefully.

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2 thoughts on “Patient Wisdom

  1. I hope you don’t mind me asking…how often do you go in for these treatments? And how do you stay so positive? I often forget that you have this disease, and I’ll bet you never forget, that it’s always on your mind. Just wanted to take a minute to say that I’m thinking about you and all that you have to go through at such a young age. And reminder you that you are strong and encouraging to so many others around you, both in real life and online 🙂

    • Thank you 🙂 I go in every other Friday. To be honest, some days I get a bit frustrated but I know God has a plan in all of this. Being able to be “retired” helps a lot too. It’s easier to not get overwhelmed by my health when I am free to focus on it whenever I need to. I certainly have my bad days though!

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