Validation

 It's really invalidating to be told that "I know what it's like cause..." Insert family member or pet here. Unless you've actually lived through it you can't know what it's like. 

Hi, I'm CJ and I got diagnosed with a Paraganglioma in 2019. I'm not a Dr and I'm not giving medical advice. This is just my journey I've experienced. I had an "ear infection" for 6mo. They saw what appeared to be redness behind my ear drum. They referred me to an ENT. An ear nose and throat specialist. They took one look and confirmed it was a tumour. 

The ENT told me that it's really tiny. However they wanted to more testing done. The more images they did. The more they found, and the bigger it was. It was all over my head and neck. 

I had horrible vertigo around the time of diagnosis. It felt like I was drunk. The world was tilting. And no matter how hard I tried I couldn't walk straight. Eventually I would fall over. Vomiting cause of the intense dizziness. My body felt like it was trying to be pulled through the ground. And when people tried to get me up. They compared it to separating a magnet.

Later I found out that it was benign positional vertigo. Or at least that was the diagnosis given. That my left gravital center was broken. And that me feeling like I'm falling whenever I tilted back too far was the main symptom. They gave me anti vertigo meds. And sent me into radiation

Proton therapy to be exact. What they don't often tell you is that radiation is expensive. Insurance didn't want to cover it. And it took a few appeals for them to cover some. After it was 300k. Around that number, and we had to set up a payment plan. The radiation was an all day experience. Driving 1-2 hrs to the center waiting an additional hr to be brought back. Strapped to a table by a mask. As a giant loud machine whirled around your head. Getting super close to your face. Tat took 1-3hrs. Then wait another 1-2 hrs to talk to the doctor. And another 1-2 hrs back home. Except moving to the new task I slept all day. 

The therapy was every Monday through Friday for 5 weeks. I lost a section of hair, became nauseous, dizzy, and exhausted. After the therapy I could not walk to my mailbox or even to the bathroom without help. I became reliant on a wheelchair or walker the majority of the time. With therapy I graduated to a cane. But even today in Nov 2023 around 5 yrs later I still can't walk long distances. 

I was passed from Dr to Dr. They did not know enough to help. Or they told me I'm to much of a liability. With my hallucinations, ideations, episodes where I would convulse and pass out, vertigo, fatigue, heart problems, liver and kidney problems, and undiagnosed fibromyalgia. It was apparently too much for people to do a basic exam and give me the meds I needed. Just to manage my symptoms to make my life bearable. 

I've been told by specialists it's cancer not cancer. Meaning they normally aren't malignant. However mine is acting malignant. And that these tumours are more aggressive than most cancers. That there normally slow growing and I shouldn't have a problem with it while I'm living. However my symptoms have gotten worse. When I talk to Drs about it. I'm either crazy, not sick enough, or over exaggerating. 

I just had a recent appointment. My tumor is heritary not hereditary. They can't find any markers for mutations. However it has all the Hallmark signs of being hereditary. And that in 2years since my recent testing. It's doubled in size and more have grown. As well as last time we spoke it's eating and pushing it's way through my jaw, skull, and spine. My oncologist told me that there very rare that he's been working in the field for 50 yrs. And he has only seen 10 pheos or paras. And that every one he's seen has been in a different location, different symptoms, and different responses to treatment. Surgery is dangerous for my case. Radiation didn't work. And they don't know of any treatment or how to manage my symptoms. I've had 4-5 Drs pass me off to the next cause they either don't want to deal with it. Or have no clue. 

That's why when people say it can't be that bad. Or when they say they know what it's like. Or that no one really has that much on there plate. It makes me so upset. Cause unless you've lived this nightmare you can't feel, and think, and survive like I have. So if anyone has similar experiences: you are valid. You are seen. Your not crazy. I see you. I hear you.