Ginger Vee My Chronic Life

When I was a very young girl, I had 3 sperate head injuries. The 1st; when I was 3 years old, I fell backwards from forcefully rocking a rocking chair & it flipped backwards and I hit my right sided Occipital/head/neck area on a steal, wall mounted radiator. No doc visit.
I fell at 5, running on cement that had pea gravel at school in Kindergarten. I fell face first onto my chin, causing a hole in my lip on my right side, and jamming my canine tooth up even with my gums, and the dentist assumed I swallowed it, but it grew back down normally over time, and the chin & lip healed. Never got a CT, MRI, or rechecked by the dentist that had just sent me home after my x-rays, telling my mom I’d likely need braces as a teen. Never mentioned it again until less than a year ago, in relation to medical issues. It was always just a story about how I never ended up needing braces.
At around 7 I fell, head first into the corner of a hallway table (don’t run in the house), and I got stitches, of which my dad took out in our bathroom about 10 minutes before our Birthday party guests were to arrive. I never went back to the doctor.
I had my first migraine in 2nd grade. Ear aches on my right, jaw pain, face pain, teeth and gum pain, weakness on my right, dizziness, vertigo and nausea constantly since then. I’ve always had extreme car & motion sickness, and I was/am very clumsy. Unfortunately, I was picked on by my family as I grew up, to be “accident prone” & fragile and weak. – no, I was just sick and had legit balance & cognitive issues. My fight/flight/freeze response had been stuck on “fear” since I hit my Occipital at 3. I’ve always had trouble concentrating, memorizing, taking tests, and over excretion or high emotions always resulted in mind numbing, sharp pain. I had lightening strikes down the right side behind my ear down to my neck if I quickly turned my head, for as long as I can remember. I never told a soul that those happened to me until my 38th birthday.

In 4th grade I noticed that the top crown of my head, on the right, would go numb and tingly. It felt the same as my foot when it “fell asleep,” so I thought it was normal. By the time I reached high school, I had daily headaches, most of which I now understand to be a tried and true migraines. I never complained. I never told anyone about my pain. I’d had it my whole life; I thought it was normal for every human to have constant pain.
I’m almost 40. I didn’t think my pain mattered until about 10 years ago. I was raised to believe my pain and my needs and preferences were selfish. I’m an identical twin, and she always rejected my attempts to communicate my struggles. I learned at a very young age to shut up, suck it up, and “don’t be selfish.” For most of my life I lived with the philosophy of “fake it ’til ya make it” and, recently, I just simply got tired of faking it.

Soon I learned, my pain DOES matter. I MATTER! Pain is not most people’s constant state of being, and I am not selfish for being different and “needy.”

Finally, a year ago, I received an official diagnosis: Complex Occipital and Trigeminal Neuralgia, caused by severe head trauma as a young child. It affects physical health and mental health, greatly. It’s considered one of the most painful conditions known to man, and is aptly (unfortunately) nicknamed “The Suicide Disease”. I’ll get y’all stats on that one day. It’s sad. Of course, I’m striving to live life again so I’m in the midst of getting second, third & 4th opinions, and recently spoke with a Neurosurgeon at OHSU. He has referred me to a specialist dentist in Washington to see if she can help me. The Orthopedic Surgeon has me getting a full spine MRI, and a nerve conduction study, and a spine specialist, so I feel like I’m heading in a solid direction for salvation. For once. (And I’m so thankful.)

I am a very sick girl, with numerous debilitating symptoms, and pain every single day of my life, yet the only “proof” I have is that purple 🟣 circled lump on my forehead in this pic. It’s where I got stitches at 7 years old, and there’s a very faint scar on the bottom of my lip from my fall at 5.  The bump on my head was mostly invisible my whole life; though, I could always feel it under my skin. It was small but didn’t hurt, so I never had any concerns about it.

Well, in the past 6 months or so, this bump on my noggin has become quite obvious, especially during a bad flair like today, and without makeup. It looks like I got pelted in the head with a fist sized rock, and it hurts like hell. It’s probably become at least 3 times the size it was for most of my life just today alone.

My point of this ramble?? Significant, life stunting, debilitating pain isn’t always obvious. Physical pain can’t always be physically seen. But! Just because one can’t “see” it, your pain and symptoms are valid, and, YOU matter. Pain and mental illness does not make you selfish. You are not making a conscientious decision to be sick. In any way. You are not doing anything that should be deemed selfish; if all you want to do is manage your pain and live your life as comfortably as you deserve, you have every right to do so.

Speak up. If you’re ignored, go to someone else. Don’t allow those who don’t respect you or love you to diminish your right to live your best possible life. Don’t apologize because your suffering is inconvenient to them, and your needs are irrelevant to them. That’s not on you. You have nothing to apologize for. Nothing to feel or be guilty of.

Your pain and adversities do not eclipse theirs, nor should their challenges outshine yours. Suffering is suffering. Pain is pain. Anguish to one may not be anguish to another, but there is no hierarchy to anguish. It just plain sucks, for everyone. Always. Don’t question someone’s pain. Don’t disregard it because it makes you uncomfortable. I assure you, we are far more inconvenienced, far more uncomfortable, and in far more pain than you can comprehend. It’s truly unbelievable to us as well. But, that doesn’t mean the severity doesn’t exist.

Please, just because you can’t see their ailments, please know that a person who’s struggling deserves love, compassion, empathy, patience, help, encouragement and well wishes just as desperately as someone healing from a compound fractured fibia. And, if you are hurting, speak up. You might…uh..maybe, be able to get some earlier medical intervention. 🤷 Seriously. You’re strong and brave. Look at how far you’ve come on your own! Imagine how much better it’ll be, and how far you’ll go when you’re no longer fighting it all alone. Speak up. You matter. 🕉️💜