Dr. S. stretched across the exam room counter-desk, leaning long on his arm, smiling with his eyes closed towards the ceiling as he talked about his wife and how he seemed to always be in trouble now. He loves her and it shows in every smile that slips away when he mentions her or his sons. She’s working a crazy hard schedule now and he says he is a clumsy aide-de-camp and seems to just make her more annoyed than ever but he was going to keep trying anyway. The busy time lets up soon for her and they will go on a nice vacation they both deserve. It’s always so cool to listen to him talk about his family.
I really like my G.P. He became a doctor midway through adulthood, it’s his second career. Delegating, saying “I don’t know. Let’s send you to a ____.” and down to earth approachability is why I trust him. I’d put in for this appointment two months ago to catch up, let him know where I stood with diagnoses, directions I hoped to head in and any advice I could get from him. Exhausted, completely lost about how to handle my confusing and fucked up health issues, I needed someone to direct me. In that time it got rescheduled twice, once by me and once by the office, so much had happened in the interim. He had just spent about forty minutes with me when, I’m sure, there had only been about fifteen penciled in. I can only imagine his front office ladies were about to dart him, lasso him, and drag him out. This was above and beyond the call of duty.
Because of my Swiss cheese memory and how important it was, this pressing feeling of being at a cross roads, I spent two or three nights writing in my tablet everything I needed to speak to him about; questions, new diagnoses, what test results did he need to request, new medications, new doctors and now, this last ridiculous appointment with the endocrinologist. I take aspirin almost daily, rarely missing a day, from the headache … the constant fucking headache.
Diplomatically, Dr. S. stated that the endocrinologist is one of the only practicing on our county and various other professional and upstanding declarations. I said that may be true but he is a jackass, to which Dr. S. did not bite but remained professional. He did, however, when I said that the idea that I wasn’t unwell enough for a pituitary study but was so complicated I should go to the Mayo Clinic was fucking ridiculous, say that perhaps a teaching college would be a better for me. The Mayo Clinic would be better suited for when one has exhausted more regionally appropriate avenues. I can work with that … you don’t have to think he’s an asshole, I’ll do that for you.
Coming up with a game plan, even writing it down and explaining it to me two or three times over because my memory loses it just so fast are his trademarks. Implementing it was smooth and uncomplicated because it was ingrained in my memory.
I took some aspirin then:
- Contact my health insurance and request and case manager. Due to the nature of my rare illness and it’s varied and complicated nature, I’m overwhelmed and lost.
- Inquire about seeing doctors, particularly professors, from a particular teaching hospital in Philadelphia that Dr. S. prefers. If acceptable, find doctors for the specialties I want, but especially for Endocrinology.
- Take the list of known upkeep issues and stick with them. If nothing comes up that absolutely requires looking into, put it off for now. There is enough on the plate. Do upkeep and management for now.
Wednesday the insurance company was working to get me a case manager. Thursday I was making an appointment with an endocrine doctor at a teaching college from Philadelphia at his Jersey office. Friday I was getting things together for the appointment and looked at my brain MRI images from 2013 and when looking at them realized there is a good shot of my pituitary.
A pretty good shot, actually.
Hey, I wonder if that’s how fat pituitaries are supposed to be (I am kinda’ obsessed with fatness). Hours later, after searching images for “healthy pituitary image mri” or “normal pituitary scan” and the like, I was getting confused. What the fuck was the two glowing things in front of my pituitary? Nothing is supposed to be in front of your pituitary, that it was dark inside the pit is another issue I’m unclear about anyway. I’ve had these images for almost a year, and Dr. Jerkyl the endocrinologist never looked at them?
On Saturday, getting lost again on the internet, trying to prove to myself that I didn’t have worms in my head made me forget the mail until almost three in the afternoon. The three envelopes from the insurance company looked nondescript and with the alien eggs in my brain, I figured these were just EOB’s and almost didn’t open them at all. A quiet little voice squeaked through the cacophony, telling me that these envelopes were the wrong size for EOB’s. Opening one, it explained dryly why a claim from Christmas eve still wasn’t being paid. “Pffft. Great. I better call them.” Opening the next envelope as I entered the laundry room-mud room I had to stand for a second and let my eyes adjust to the change in light so I could read the simple letter stating that my revision surgery to remove my gastric band and do a verticle sleeve gastrectomy had been approved.
Almost tripping up the three short steps to the kitchen, I stammered “It’s approved! I’m a go. It’s ok! They said ok!”
E. must have thought I was doing bath salts but then she saw me get to the kitchen counter re-reading the letter, explaining that my surgery had been approved. Mildly impressed, she went back to watching someone live streaming a game and said “That’s great.” I promptly took a photo, edited it, posted it to Twitter, Instagram and text. It got more likes than my brain did … not surprising, though, really. I like it more then my brain, too.
What to do, what to do.
- See Mr Super Brand New Endo Dude and say Hey Man, how are you. Nice digs. Here’s my shit. Can you look at this picture of my brain. Should I get my stomach ripped out now or later.
- The next day, see my surgeon. ( Who I love even though he’s married and his wife works in the office. I could take her in a fight. ) Armed with the info from the consult with the Super Brand New Endo Dude, we can go from there as far as scheduling.
- Oh and the car is in the middle of being diagnosed. So far we’re up to about 1,400.00. We don’t know if E. can stay at her school or if she will have to transfer to a local one! It’s all down to the wire folks.
This is exciting, nerve-wracking, hopeful and, God, I’m so afraid to hope again, ever again.
Holy Mother of God.
“If it wasn’t for the ‘Pirin Tablets, I don’t think I could go on.”