I have good news and bad news. I didn’t want to share my diagnosis online a few weeks ago because of MRA’s but it turns out the diagnosis was wrong and that’s a good thing. The initial diagnosis was Trigeminal Neuralgia which is when a blood vessel sits on the trigeminal nerve that goes directly to the brain. This disease is also called the ‘Suicide Disease’ because it’s one of the most painful conditions to have and many people just kill themselves. There is no cure for it. You have to take anti seizure medication and undergo surgical procedures that have mixed results. I was diagnosed with this condition a couple weeks ago prior to the bone scan that ultimately determined the true issue.
The 5 hour bone scan last week at hospital was a pain in the ass but ultimately found the problem. The technology is amazing. They injected me with a dye and put me through a tube, similar to an MRI machine. I had to drink lots of water and come back a few hours later for pictures. They took at least 80 photographs of my left jaw and the machine made a pretty noise that relaxed me.
They found that my jaw bone is infected and some of the bone has died. I had to go to the ER to start intravenous antibiotics right away. I am having a semi permanent intravenous spike placed near my heart today that doesn’t come out until my 6 weeks of intravenous therapy is over.
UPDATE: The ‘pic’ near the heart was attempted today with me kicking them away and screaming like a stuck pig. They have to numb the vein and it hurt like a motherfucker. Then they place a threaded wire deep into the vein and near your heart. I had about 3 minutes of this woman poking, the ultrasound machine kept switching off and making it last longer, and I had enough. Whoever that woman was, she sucked and I told them, ‘you’re gonna have to knock me out for that.’ I had a breakdown and cried ‘What are you doing to me!!!!!?’ That was it. I had enough, she took out whatever needles and wires she was poking me with, and I curled up in a ball and cried for 20 minutes. I couldn’t believe the pain and the way I reacted. I have good veins in my arm in the elbow joint but a pic has to go in the upper arm, in a large vein and it has to be sterile and threaded near the heart. Since I’ve been ill for a month and losing weight my veins are all tight and small. Fuck that shit.
I’m also taking oral antibiotics and will have to have surgery to scrape out the dead bone and possibly reconstruct the bone with plates and screws if it’s necessary. I won’t know until I have a proper MRI and the surgeon cuts me open. I’m seeing the surgeon tomorrow. I haven’t had a rest in days.
You can imagine the pain I’ve been in since bone pain is incredibly difficult and then add nerve pain on top of it all. I went through a month of this severe pain without taking hardly any strong narcotics. My doctor looked at me the other day and said ‘You are one tough lady, oh my god, you’re tough.’
I took that as a compliment but at the same time it’s not ‘tough’ to suffer the way I’ve been suffering. The side effects of all the medications I’ve taken haven’t allowed me much concentration. The anti seizure meds were the worst because your eyes cannot stand still to read. They flutter and can’t focus.
I was able to watch videos on the anti-seizure drugs but mostly I couldn’t read a word so I haven’t been posting much. I’m finally off that crap so I have some eye focus back. The only thing now is having to travel to the hospital every damn day for my IV medication and then having oral surgery. Fuck though, I’m so glad I don’t have Trigeminal Neuralgia. That would’ve devastated me.
The nurse had to poke and prod me yesterday and I have a bunch of bruises on my arm now. She wasn’t the best at finding veins either. I kept telling her to poke my arm vein and she insisted on trying lower down the arm. Of course, when she did it my way she got a vein. I’ve always had huge veins but I’m dehydrated and I’ve lost 10 pounds from pain and not being able to eat properly. Not the kind of diet I had in mind. I notice weight loss immediately because the first place I lose it is in my breasts like many other women.
Ultimately, I hope to be well again in a couple months. I’ll still post here and there and you’ll know when I’m feeling better because I’ll start ripping on MRA’s and transactivists again like never before. I save all that negative energy to throw at them because they deserve it.
As always I’m fundraising because it’s really expensive getting back and forth to the hospital and of course, buying special food that’s nutritious that I can actually manage to swallow.
I’m deathly afraid of the surgery because any kind of fiddling around in the mouth can cause more problems. It’s such a sensitive place with a ton of nerves that I’m not too keen on being fucked with again. I’ve also heard that putting screws and plates in jaws can cause problems for the rest of your damn life.
My dentist feels pretty bad and guilty now because he was so dead wrong about everything. He even called me last night, sort of in shock. In his mind he thought I was just healing up and he was in total denial that I had an infection. Hell, even my blood work came back looking good and not indicating infection but it’s been there the whole time, eating away at my bone and affecting the nerve. No matter how much I told him something was really wrong, he denied it. He feels pretty fucking dumb right now. My doctor at the hospital was worried about phoning him because after I spoke with her about his denial she said ‘I don’t want to step on his toes.’
You know what? Who gives a fuck about his toes!? Give a fuck about my mouth dammit! This whole ego bullshit between doctors is a fucking joke. My dentist has to accept he was wrong and fucking deal with it. He has to be an adult and realize he made a mistake. His ego is the last thing on my mind.
Well, I’m off to the hospital. I don’t know if I’ll post again before the 25th but I might. I will keep you all updated on my progress and I hope you all have a great holiday season.
Thank you to those who have donated to me. You’ve made this hell a bit easier to deal with. If you would like to donate please see the paypal button underneath mine and Boogie’s picture on the upper right of the blog. You don’t need to have a special account to donate.
Diana /House Mouse Queen