It began with a “WTF?!”…and they just kept coming. The story of my Pineal Tumor journey.

Part One: “WTF is wrong with me?!” Finding the tumor.

I have always been an active person. Not an athlete by any means, but overall pretty fit and healthy. I loved summer and being out in the sun. One hot, sunny day, I was walking the track at the football field across the street from where I lived. This was something I did almost daily. But this time, something changed. I was walking my usual speed, had my headphones in and my water bottle in my hand. I was on lap 3 or 4, heart rate started to rise a little, and my legs started shaking. At first it was just an odd sensation, kind of like having the chills. I stopped and tried to shake it off. But when I started walking again, the shaking got worse. A lot worse. I couldn’t stop the shaking and my legs wouldn’t hold my body up any more. I had to sit down and wait until my heart rate lowered and I cooled off before the shaking stopped. I sat there thinking, “WTF was that?”. I went back to walk the next day, even though it was a little chilly outside, and didn’t have any issues. I wondered if I had over reacted or imagined it. A week or so later, on a bright sunny day, my kids and I went to walk around the pond near our house. My eyes kept watering and it was difficult to keep them open. The light hurt my eyes. I had sunglasses on and I still couldn’t hardly handle to be outside. Once again I had to ask myself, “WTF!?”. I broke down and went to the doctor. After a short visit, and not much concern, I was told it was probably just from Migraine and Anxiety. Soon after, new “wtf?” symptoms started popping up: balance issues, stuttering, having trouble finding words, sleep issues, tremors in my hands, focal seizures, ringing and buzzing in my ears 24/7, constipation, severe pressure headaches that wouldn’t go away, and so many more. As new symptoms showed up, my doctor began discussing the possibility of autoimmune issues or a deficiency. So we began the process of ruling things out. Multiple blood tests, sleep study, EEG. We systematically ruled out things that could be causing all of my issues. After 5 years (seriously) of testing and managing symptoms as they came, I got pregnant. During pregnancy, many of my symptoms got better or went away all together. When my son was about 5 months old, they ALL came back. Worse and with new ones. I would get vertigo just walking around. My light sensitivity got way worse, I couldn’t even be outside when it was cloudy. I sat and cried, wondering “WTF is going on!?”. Doctors decided that it was looking like possible MS. They finally decided to do an MRI to check for lesions and move forward with the MS diagnosis. As I waited for the MRI results, I kept wondering what life with MS was going to be like. Preparing myself for actually hearing the words. Only that isn’t what the MRI showed. The MRI showed a “10mm mass on the Pineal Gland”. As I am listening to the neurologist tell me that i have a brain tumor, I felt the most emotional and heavy “WHAT THE F@&K!?” that I have ever felt in my entire life. Well, at least up to that point. You would think that finding the cause of my symptoms would be the beginning of the healing. But, unfortunately, you would be wrong. My battle was just getting started. Check out Part Two: “WTF is wrong with these doctors!?” How I had to take my care into my own hands. Coming soon.

8 thoughts on “It began with a “WTF?!”…and they just kept coming. The story of my Pineal Tumor journey.

  1. Great Part 1 of your PGCT journey ❤🧠💪looking forward to following along in your series of your journey.
    Thank you so much for writing and sharing your story with all of us.
    I’m so proud to be your friend and fellow advocate.
    Keep going strong my fellow warrior, you rock lady!

    Liked by 1 person

  2. My story is very similar to yours. From being told I had MS. I knew something was wrong when I couldn’t eat anything without puking. Then my arm went completely numb. Like it had fallen asleep with the tingly feeling. I went to a clinic and they sent me to the hospital. The neuromuscular diseases unit set me up for 10 months to tell me I had MS. But after the MRI they found I had a c1 to c7 spinal cord injury and an 11mm brain tumor. It changed my life completely in one day.

    Like

  3. I know something is going on though between all my doctors I have seen now. I have seen about 10 specialists now. And now I have the Canadian patient safety institute getting a hold of me. Wanting me to write them my story. As after walking out of one of my appointments I called the neurologist that found it and said Wtf? So I think she put in a formal complaint to them.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s