Entering the labyrinth

One dead end after another, my wife and I have different views on what it all means. To her when a test comes back negative or ‘within range’ she starts to stress out and shut down. This isn’t odd since that is the exact reasoning for the tests being run.

I try to reassure her, ‘It’s like a room full of doors love, we just opened a few but we still have many more. A normal test is good, we’ve eliminated things.’

It doesn’t do much good but I hope, that when she is less stressed it will sink in. This isn’t the end, it’s just the beginning. Healthcare and indeed health in particular can be a labyrinth to navigate. It will be frustrating and there will be dead ends, false starts, but things aren’t always what they seem to be.

My wife just wants to get to the bottom of it, or in this case the center of it. But healthcare is a huge machine and wheels need to turn before you can get what you need. It is unfortunate but that is how the system works and since you are bound by the system you need to follow it and play [somewhat] by the rules.

A few tips for you, my readers who need health care or are getting sub par care from your providers.

Your Doctor is not a god, he is a mere mortal with failings, biases and an incomplete working knowledge.

I’ve had one doctor try to tell my wife her thyroid would not cause mood issues. This is not true and there is enough medical literature to back that up. But a general practitioner has a general working knowledge base, not a specialty like the endocrinologist we hope to see. So just because one Doctor says something is or is not true does not always make it so.

You have the right to a second opinion.

We all like to think of our Doctor that we see on a regular basis as our friend, or someone who has our best interests in mind. Most Doctors do, some are burnt out from the medical field, figure out which is which. Even if the Doc is your best friend, remember if you don’t get the care you feel like you deserve then go elsewhere, you won’t be hurting his feelings and if you got paid what he did you wouldn’t have hurt feelings either.

Advocate for yourself

You are the best person to advocate for yourself, don’t take no for an answer from a Doc if something is bothering you. If you have a mysterious pain that won’t go away but he can’t figure it out or says it’s all in your head, push for better care. Β If you can’t then get a friend, family member, or significant other to do it for you, it can mean the difference between the care you need and the care you actually get.

Don’t give up

Sure it can be daunting, all the pitfalls; the dead ends; the negative tests; the seemingly never ending cycle of visits followed by the outrageous bills. But you need care and you should have it. Don’t give up on yourself, if the problem is bad then you need to get it fixed. A trip to the ER isn’t a great option, especially when you can get the care you need to prevent having to make that trip.

My wife is going through all of this right now. I’m trying to advocate for her and carry her to the finish line. Even still all the tests and the talks with the Doctor aren’t helping, it’s taking too much time. She doesn’t want to do this anymore, but who can blame her? That is why people don’t get the help they need, it’s a process and a hard one at that. So they take mediocre care and try to live with the problem.

You don’t need to do that, the healthcare system is a beast, yes. But it can be beaten like anything. I’m too stubborn to give up anyway, she needs help and I’m going to make sure she gets it. So next time you or a loved one needs help, remember don’t take no, or worse, I don’t know, for an answer. They deserve proper care just like anyone else.

14 responses to “Entering the labyrinth

  1. Dear Gabriel,
    I just had to share, that unless a complete thyroid profile was done on Erica a “TSH” level is not enough. You can have a “within normal range” and be in a state of hypothyroidism. As I suffer from. I’m so delighted that you posted this blog. You are so right, Doctor’s are not gods. I have suffered from their arrogant attitude, and when it comes to thyroid the majority of them don’t know shit from shinola.
    Sending Love & Light To You & Erica,

    • thanks Anastasia .. my husband won’t let them give up on me, no matter how much I want to just throw in the towel. Would you mind somehow contacting me with your experience?

    • Thank you Anastasia, you are too kind as always! I had a full workup done for her after arguing some with the Doc, the results are back and I see a problem, the doc doesnt but when I’m done with her I think she will have a change of heart.

      • Dear Gab,
        If there is anything I can do to help please don’t hesitate. I suffer from hypothyroidism and Hashimoto’s Thyroiditis. Everything that was mentioned regarding Erica’s symptoms sounded like thyroid to me.
        Your Friend,

  2. I concur. My best friend was w/in the “normal” range, low end, but “normal” for 20 years. She knew something was off, but until a doctor finally listened and did the full work-up did she get the help she needed.

    She’s blessed to have you at her side b/c sometimes going to the doctor is akin to fighting a battle. It’s nice to know there’s a cavalry.

  3. You are so right about the fight, and you sound like you have the right approach as well. Keep at it, look things up yourself from reputable sites, It took Dr’s 4 years and 2 surgeries later till they diagnosed me with RA ,and that was 15 years ago. Good luck and I hope you get the answers you are hoping for

  4. I know how you both feel. I haven’t got the severity of symptoms Erica has but a lifetime of headaches, migraines and tiredness. I had just grown accustomed to it, and assumed it would always be with me. I just thought I wasn’t fit enough, was lazy, wasn’t motivated, wasn’t trying hard enough. Then my doctor (a very busy one in a free clinic) retired so I found a new GP and the care has been phenomenal. She just won’t accept that what I deal with is normal. I’ve had SO many tests. She also sent me to a psychologist because she thought I might need to work through general stress to reduce my headaches. Luck of the draw meant that within half an hour my psych had recognised that I have probably got a sleep disorder. I am now waiting for sleep studies later this month. The waiting is killing me and even with the great Medicare system in Australia, I have only kept my head above water financially because I got a pay rise. Even worse is the stress that it might all come back negative and I’ll be back at square one, probably ending up on migraine prevention drugs even though I don’t want them…they’re just a bandaid.

    Anyways I wish you both the very best of luck. Gabriel, you are such a star πŸ™‚ And to Erica, I really believe that with time you are going to be in optimal physical and mental health, happily barefoot and pregnant with your prince πŸ™‚

    • Thank you πŸ™‚ I’m glad you are finally getting care then. I hope you find some answers soon. I know it can be frustrating but at least you have a Doc who won’t take no for an answer.

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