You should feel empowered!
Wishing for a visible pain scale
Imagine a world where our pain levels were instantly visible. Every doctor's visit, every family interaction, transformed. No more guessing, no more feeling like a complaint. My family has often asked me why I am yelling at them or why I'm in such a bad mood. At that point I typically have to say, "because I'm at a level 9 pain right now !!" Wouldn't it be nice if we turned around and they read that number on our forehead and we didn't have to say a thing? They would instantly stop guessing and ask if we needed anything. My experience has also shown me how our brains adapt, lowering that perceived pain number over time. This blog highlights that silent struggle and the yearning for true understanding, transforming everyday frustrations into shared insights.
Your voice, your journey: advocating for the best care
I learned the hard way that doctors don't always have all the answers. It took far too long to get a diagnosis, and I felt like a guinea pig for various 'treatments' that often worsened my condition. I once ran sobbing from a new neurologist office and my loved one stayed behind to tell them what he thought of his treatment plan and lack of compassion for me. Needless to say, I found another neurologist! This blog is where I share those experiences – what helped, what I regret, and why 'doing your homework' is crucial. While my path is unique, my hope is to empower you and your family to be informed advocates for your health. Remember, just because it didn't work for me, doesn't mean it won't help you.
Don't give up: there is hope and a path forward
When you're reading about 'the suicide disease,' it's easy to lose hope. But please, don't give up. There are incredible specialists and new treatments emerging. Your medical team should inspire complete trust and believe you 100%. If a physician isn't serving you, you have the right to seek another opinion. I've had experiences that made me want to give up, but my story is proof that finding the right support and advocating for yourself can make all the difference. I have shared that journaling is one of my greatest therapies. It can be very helpful in doctor visits to remember how bad your pain was and if anything triggered it. I have saved all mine through this long journey. I know some people might wonder if I truly GET the level of pain they are suffering or if I have a clue of all that they have lost since developing TN. So, I am going to start opening up some of my older journal entries and share them in order for you to know that Yes, someone else has been where you're at, and they survived! since I still have both forms of TN, I hope that you will show me a little grace, as it is going to take me some time to continue on this journey of building an encouraging website. I am just now coming out of a 2 week flare up! To others it might seem like a perfect time to sit and type. However, for me it is not. Typing can even be a trigger. It also seems to suck out half my thinking ability. We will walk this journey together and encourage and pray for one another as we go!
"You have lost your life as you knew it. Is it any wonder you are grieving?"
A compassionate psychiatrist
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