Self Advocacy

As I sit here and type this post, I’m thinking about tomorrow morning. See, I’m scheduled for a PET/CT scan early tomorrow morning. When I was thinking about it earlier, I tried to remember just how many of these things I’ve had in the last 16 years…. too many to count. I’ve read that one CT scan is like having 400 x-rays. Wow. Yet, that’s how they see inside and are better able to determine what’s going on. My Thyroglobulin is elevated, and my antibodies are in the 700’s. Which stinks. So, there’s something lurking around in there…most likely in my neck again and hopefully no spread beyond that area.

Recently, my primary care doctor left the medical group I go to, so another FNP took her place. You never really know what you’re going to get when the practice sets that initial visit, so I was a little irritated that I had to go through the whole history thing again with someone else and explain it all over again. My case is complicated, and this supposedly “curable” cancer has not behaved at all as it was predicted back in 2006. I have a gene mutation and my cancer is refractory, which means those cells don’t suck up the radioactive iodine intended to kill it.

However, my third visit with her was a bit different than expected. She’s kind of stoic, so I wasn’t sure how she was going to take what I had planned to say. I’ve had some issues with my kidney and liver blood work and I kind of felt in a way that she was blowing that off. Now, maybe in some ways I felt like that because of my past experiences with other medical professionals who did, in fact, blow me off in the beginning of all this.

She started going over my blood work and said, I really don’t think it’s anything to be concerned with. So, I just decided to be honest with her. I said look, there may be nothing wrong with my kidneys. But SOMETHING is clearly wrong somewhere because I do not feel well at all. Maybe it’s this thyroid stuff but I don’t feel well and my back hurts all the time. The back issue is another thing in and of itself I think…. but that’s a story for another day!

At the time, I really did think something was up with my kidneys because of my rising chloride and creatinine levels. Plus, I’ve had this weird symptom of smelling ammonia in my nose. Anyway, I just talked to her like anybody else and said, I’m not trying to be hard to get along with, but I think we should at least check it out. She looked at me and said, if you feel that way then we will schedule you for a renal ultrasound. And then she said something that really surprised me. She said, I see you, what??…maybe 10 minutes or so here and there?? You know your body better than I do and if you feel something isn’t right, we will look into it. I totally felt empowered….and VALIDATED. And so, we did…and thankfully nothing showed up on the ultrasound. Who knows why those levels were increasing…. but at least I know they looked perfectly normal on that ultrasound, and I slept better that night.

My point here is this: I blamed my doctors for a long time. I blamed them for not researching my case more or not caring enough. And maybe they could have taken a little more interest and searched for some answers, I don’t know. But I DO know that your family physician is your starting point, and they aren’t specialists. They are there to get you to where you need to be when you aren’t well. You and you alone are responsible for making it clear that you believe something is wrong inside. You feel it. You live with it. You go to bed with it. You wake up with it. It is there all the time. You have to advocate for yourself. Nobody else can do that for you. Speak up! I get how intimidating it can be. Afterall, you’re not the one who went to medical school, and you don’t have any letters behind your name. But I can guarantee that you know your body better than anyone on the planet and if you want answers, you have to be willing to speak up for yourself. You can’t blame the doctor for not sending you for further tests or be angry because they didn’t do what you expected, if you don’t say anything. Another important thing is asking questions! If you don’t understand something, say so! They can’t read your mind. I’m sure there is nothing you can say or ask that would surprise them in any way.

I want to speak to my women readers right now. It’s a man’s world, ladies. We know this. Men and women are treated differently sometimes (just my opinion here) and it’s because God made us more emotional creatures. It’s in our DNA. And sometimes, it causes issues for us when we are very sick. Case in point: My trip to the ER in June. When the nurse was asking me questions about my symptoms and what medications I was on, the minute I mentioned antidepressants/anxiety medication, the air in the room changed. See, women go to the ER all the time with heart attack or stroke symptoms, and it ends up being a really bad anxiety attack. And I think what happens is they make up their minds right then and there, that it’s probably JUST an anxiety attack. If you’ve ever had one, it is NOT pleasant. At all. You really do think you are dying. My best friend went through that whole thing too and it’s a good thing she didn’t give up and decided to seek treatment at another hospital. See, she had a heart attack. The first hospital sent her home with “anxiety”. Thank God she spoke up and didn’t give up. She knew something wasn’t right and someone finally listened.

I am sure there are thousands of women in the United States that get labeled with anxiety as the cause of their symptoms every year in the ER. It’s sad but it’s true.

I found out the hard way how important it is to speak up. If I had pushed harder in the beginning, would I be here now? I don’t know. Maybe. But maybe not.

So don’t be afraid to say how you feel and don’t be intimidated. Just open your mouth and speak up! They are human beings just like you. And you, my friend, are the expert when it comes to your body.

One response to “Self Advocacy”

  1. Very well said..thank you for sharing!

    Liked by 1 person

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