I use a pseudonym because I’m a square peg. I don’t fit the mainstream’s, the Bible Belt’s, round hole. I am afraid. Afraid of retribution, crucifixion, being burned at the stake again. But, I have to ‘come out’. I’m exceedingly transparent in real life. And how. That’s part of my problem. ‘Bigmouth strikes again’. Although people often say I’m an eloquent speaker I feel I sometimes lack tact, grace. Wish I were born on Tuesday — ‘Tuesday’s child is full of grace’. I just say what’s on my mind. I’m all-in. Always.
I ❤ BIG, too. REALLY BIG. I ❤❤❤❤❤ everyone I’ve met here at WordPress. I think you’re all SO ‘beauti-beauti-beauti-beautiful’! Oh, so. I do. I can’t keep this from you any longer because sooner or later I will have to go away. I’ll be back but there’s a always the chance I won’t…
I started this blog at the behest of friends. I tell good stories, they say. But, there are some stories I need to tell. Why I’m ‘Dizzy’. This is but one…
I’m sick… Have been for a long time… Achieved impossible remission on more than one occasion.
I’m also post-linguistically deaf. Yeah. Lost it in six days at age 20. Music was my EVERYTHING. I can speak, sing even. ❤❤❤❤❤ to sing! I have a Cochlear implant. I only really ‘get’ music I knew before. I upgraded in January and am catching new grooves all the time. It’s the best I’ve heard since I lost it. It’s super-fantastique! The music drives me to distraction…
I have all these doctors. There are a lot of protocols. They can ONLY work within the confines of the protocols. There’s a lot of running around on my part.
Dr. S is my G.I. There aren’t many. It’s a difficult specialty. No one wants to be a G.I. She has so many patients. That’s why everyone thinks she’s a bitch. That’s why I have to stay an ‘active’ patient, see her all the time because if I don’t and I tank I have to wait 3 months to see her.
Dr. K is my I.D. Head of his department at the University of Metropolis hospital. I had to see him because he can prescribe classes of medications the others can’t. Like Ertapenem. He is the most good, kind, gentle man. One of my kitties is named after him and my Vetrinarian, who is dying of liver cancer. She’s my Vet. My VET, my friend, my Love. Funny and talented. She and her husband are total cards. Just silly. We can’t lose her. We will, but we just can’t… Sigh…
Dr. L is head of surgery at the U of M. He’s very gruff, but, WAY groovy and cool. We like a lot of the same music. He is dedicated — they all are, really. He NEVER sleeps. He’s up at 3 even when he’s on holiday. He’s a ‘God’ as many surgeons tend to be. Sometimes we do informal things outside of protocol. Like, admit me through the back door on a Friday, do surgery at 1 a.m. on Saturday morning, discharge me Sunday. We do this because I can’t be examined without anesthetic. The surgery I’m waiting for is big. I’ll be there for weeks. We can’t go through the back door this time.
I REALLY ❤❤❤❤❤ them, they me.
I’m allergic to the meds that might make me better now. Spent months on I.V. Going to hospital every day for medicine — more than once. If the Ertapenem won’t make me better nothing will. I’ve been on antibiotics for the better part of 4 years. There’s only one I can take now. Got off for a couple months. Back on. The ONLY way I’ll get off is to have this surgery.
My ENT retired. He would see me on a moments notice. The new guy won’t see you for 6 months. His secretary told me I needed a standard hearing test first. What hearing? Told my audiologist. She was none too impressed. None. Lowered the boom.
The meds I had to take made me sick in new and more interesting ways. Bad medicine — taken plenty of that. Suppressed my immune system and affected my implant. The issues with the implant went unaddressed for 8 years. We had to re-implant. That’s why I am in the boat I’m in right now… They found a staph infection a quarter inch from my brain? Had to do reconstructive surgery on my scalp. Eight years! Eight! Pain.
Everyone always says I’m fine, because I look fine, am always smiling and friendly and don’t scream at people when I don’t get what I want. I have to get REALLY awful before I stop smiling at you. I have been really awful, too. Been to the Dark Side. Not a lot of people will cut you slack when you’re there, either. Was hurt and surprised by that. Devastated, actually.
I loved the ENT. My friend dated his daughter. I’m rather angry at him, still. I don’t like being angry. I ❤❤❤❤❤ed him. We did lectures together. But, my life is a nightmare now. If he’d just fixed it when I had first asked I believe none this wouldn’t have happened. He did the best he could. It just wasn’t good enough. It was the first domino in a succession.
Tigger says I’m the most malpracticed person she’s ever met.
The system is broken. Everyone is upset, too. We all are, the doctors, nurses, everyone. ‘They’ are gunning for collapse. ‘They’ want an American model. That model costs WAY more than our’s and only a few are helped. ‘They’ want to become disgustingly, absurdly affluent on the backs of the afflicted, my people.
I’m afraid. Was supposed to have surgery in June. I don’t think I’m going to get in for months or that I’ll have to get really sick again, become an emergency, first. Because all they’re doing right now is emergencies.
Dr. K said in January that the antibiotics would kill me if I didn’t get off. So… I’m wrestling with my mortality every day right now. Every. Single. Day.
I try very hard to distract myself. It’s getting harder and harder. Spinning my wheels. Feel dizzy.
Feel my days might be numbered…
‘I got this feeling that it’s later than it seems… Doctor, my eyes… Just say if it’s too late for me…’
Anyway. That’s the skinny. Yay.
I know this story is all over the place. I’m very nervous telling it. I feel I couldn’t move forward until I came out, came clean. I’m not good at secrets. Felt like I was lying to you.
Thanks for reading, following and liking my blog. Means the world to me. Really. It does.
Much ❤❤❤❤❤ to you.