Yesterday, I had an MRI done on my brain and neck. It’s been 15 years since I’ve had one and it’s because of someone mentioning a condition in a YouTube video that I have put forth the effort and energy to, yet again, try to get doctors to take me seriously. I have had migraines my entire life, but things have really taken a turn for the worse the last six years and the last year or two has been a series of wake up calls in regards to my health. That one mention of a condition lead me down a rabbit hole of information, fueled my insomnia, and got me out there advocating for myself. Finally.
So yesterday evening, I logged in and looked at images of my brain. It’s there. I have one. My mom made sure to make a joke about that. But there have to be clues hidden in those pictures that the radiologist didn’t find. A little message hidden in my brain, waiting for me to find. (A little Douglass Adams joke hidden in my blog.)
But instead of it being noted in the report, it was pointed out by people who live these things daily in a Facebook group. They aren’t there to diagnose me or tell me what I should do. They are there to encourage me to keep going and to get another opinion. They are there to validate the experiences I have lived with for years and do my best on a day to day basis to pretend like they don’t exist.
I’ve got an email out to the office of a specialist in hopes they will now see me, now that I have imaging in hand. I knew before seeing the neurologist that many radiologists miss these things and many doctors don’t diagnose and treat them. All of my images were looked at in under 20 minutes. From the time it took me to go upstairs, sign in, and get my blood pressure taken, one person decided my brain and neck have no abnormalities.
It’s scary because it’s my brain and because surgery is sometimes the solution for people with the conditions I want to be assessed for. But it’s just as scary to continue to not have answers and to continue to get worse. I’ve tried to talk about these things minimally and have only said the words outloud a few times. Like if I say it, it gives it power and makes it more real. (Or if I say it, it might make people think I’m crazy and making things up.)
I have also been seen by a rheumatologist and had blood work done. I was less than thrilled with that experience and will be switching providers in that office. My next appointment is over a week away and I’m back at square one hoping they will hear my story and see me as a person and not a number.
I needed to write. I feel raw and tired, but okay. I can’t dance around the tough subjects in my life. Facing things head on works best.
*Update: Neurosurgeon’s office called me back and I have an appointment set for August 20th. I have a few hoops to jump through to get everything ready for it. I also got a call from the rheumatologist’s office and they had to change up my appointment, so it is now two weeks away. I also had two people give me lots of feedback on my MRI, which gives me a lot to read and take in.*