Wednesday, June 19, 2013

it's always something

On the 4th of this month I went back to Yale for treatment for my PCOS.  I detailed that visit here and here for those who have not been paying attention.
Today is the 19th.  I still haven't been able to pick up the 3 months of pills from the pharmacy.  According to the pharmacy, they have not received the paperwork from the doctor.
I tried that Saturday.  Nothing.  Pharmacy said they would call the doctor.  Doctor didn't call back.  I emailed the doctor, she said they were sent that day.  I reiterated that the pharmacy had not received them.  She asked me to resend the information for the pharmacy.  I did, last Friday.  Saturday I stopped in the pharmacy and they had nothing.  The woman helpfully looked at every location in the computer in case the paperwork had gone to the wrong place, nothing.  I showed her the emails on my phone from the doctor saying everything had been sent.  She consented to giving me 3 days of pills for free and said she would call on Monday and get it straightened out and call me.
Yesterday I called the pharmacy again.  Nothing from doctor.  Emailed the doctor again, no response.  The pharmacy just called me saying they have emailed and called the doctor repeatedly with no response.  I gave them every phone number I ever had for there and the lady is trying again.
Meanwhile, I am without these drugs that this doctor claims I desperately need.  But not enough for her to keep giving them to me.  Or enough for my PCP to take them over.  Or even for the PCP to have the new endocrinologist call me (I'm still waiting on that too).
photo source: ME!  I took it.

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Tuesday, June 18, 2013

perfect storm eating disorder

I have no idea why I was thinking about this today, but I was, so I'll share it. On the surface I'm a fat person who is a picky eater. I won't (can't) dispute the FAT part but I will challenge the "picky eater" part. To me, "picky" implies a choice. I don't have a choice.
I am a supertaster.  I taste things in food that 75% of the population doesn't know is there.  If I eat something and make a face and say it is bitter or sour and awful, and you think it's fine, that is because your taste buds are different from mine.  Supertasters are really sensitive to bitter.
I have Sensory Perception Disorder (also called Sensory Integration Disorder).  I literally experience the world differently than you experience it.  I took a SPD test and I had almost EVERY taste and smell related symptom.  So even if my nose does work the same as yours, my brain doesn't process the smells the same ways yours does.  I enjoy smells other people don't, such as skunk, and smells that don't bother other people, such as cooked fish, are extremely gross to me.  I am also sensitive to sour tastes and smells, especially what I call the "sour milk family" of ricotta, sour cream, yogurt, and cream cheese, and dirty diapers.  Food neophobia (my "eating disorder") is actually PART of SPD.
Just to prove how fucked up my brain's wiring is, I also have at least two kinds of synesthesia.  That is when your senses overlap.  Letters have colors, sound is visible, things like that.  Unsurprisingly one of my messed-up senses is smell.
As you can imagine, living in a world where most people are not sensing the same things that I am causes me a lot of anxiety. So it should not be surprising that I exhibit of bit of OCD and am a control freak.
I can empathize with those who see dead people and spirits and into other dimensions and how it must make them feel like weirdos and freaks because that's how I am every day.  I could probably ignore spirits hanging out; they wouldn't be messing with my food.
If you wonder why I can't find a therapist...read this post again. 
SPD is treated by occupational therapists IN CHILDHOOD, and a lot of it is treatment of the PARENTS to modify the kid's environment.  I couldn't find any therapists who treat SPD in adults because it's supposed to be dealt with in childhood.  I wasn't diagnosed as a child (who even knows if the diagnosis existed when I was a child?) and now apparently it's too late for me. 
So here's Rosie calling therapists.  "Hi, I have a really complex eating disorder.  It looks like food neophobia on the surface but it's actually a compound of Sensory Perception Disorder, synesthesia, and OCD, combined with being a supertaster.  Is this something you can treat?"
Dialtone.
image source is an English page on SPD


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Friday, June 14, 2013

Imminent Explosion

This frog would do a better job than my PCP.
So, over a week after I went to Yale, I finally get a call back from my PCP's office. We play phone tag.  Finally are able to connect.
First off, it's not even the Nurse Practitioner or the doctor calling, it's some underling who knows nothing about nothing and who is clearly reading notes.  That pisses me off.
And of course what she said made me angry.
"We're willing to refill your anti-depressant but that's it.  You need to see an endocrinologist for the rest."
I am dumbfounded.
For about the millionth time, I respond, "You mean like the ENDOCRINOLOGIST at Yale who is asking you to take over the prescriptions?"
"I don't know anything about that.  I have the name of one you have to go see."
"You guys don't seem to understand.  You are obsessed with these being off-label for weight loss.  They are not."
"I don't know anything about that.  Here is the doctor's name. Do you have a pen?"
So here we go again.  They better not make me take that fasting glucose test where they take 28 vials of blood in a day because I think I might actually expire this time.  Just the thought of 28 needle pricks and that draining feeling makes me feel faint.  Honestly there are black spots in front of my eyes as I type, luckily I can touch-type.
I went one time for a routine couple of vials test.  I was half-dead in the chair as usual.  I can't explain it.  I don't really think I pass out completely.  I can hear people talking to me and around me but it's very far away and honestly I don't care and I don't listen or answer.  My vision goes black and I can't see.  I feel very limp.  I don't really care about any of it, not the talking, not the lack of sight, not the fact that I'm going to fall out of the chair.  The lady starts talking to me about purses, just babbling away and I managed to say something in response, confused what purses had to do with anything.  She said, "Are you back? I never saw anything like it.  You went dead white, even your lips were white, and you were gone."  I can't fake that.  I'm not faking.  Honestly it would be so much easier if I could be like everyone else, roll up my sleeve, talk the whole time, not even feel the prick or the horrible horrible draining, and go about my day as if nothing happened.  Instead of falling into a black hole, having to be driven home and put to bed, and being sick the rest of the day.  Since the very first time I had blood taken, this has happened.  I have zero control over it.
So right now, in general, I am very hate-filled toward doctors.  Yale promised to send 3 months worth of prescriptions to Stop and Shop, and Stop and Shop says they never got them, and Yale says they were sent, so that's that, I'm out of everything.
Rosie, over and out.  Going to smash something.  Maybe my head into a wall.
(The image comes from a site with porn on it so I'm not linking back.)

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Tuesday, June 04, 2013

fat & frustrated

I went to the PCOS Yale doctor today. I was really expecting to get yelled at for what I weighed (I'm not happy AT ALL with the number myself) but she didn't yell at me.  She reiterated that she wants my primary care physician to take over prescribing my medicines.  I explained that when I was at my PCP in November, I asked again about the prescriptions.  Both the APRN and the doctor told me that they are "off label for weight loss" and they wouldn't take them over for any reason.  
The Yale doctor was pissed (not at me).  It is a waste of her time to see me just to write out prescriptions. 
She CALLED my PCP and talked to the APRN.  Got hung up on three times getting the call routed.  Finally the APRN gave the doctor the same old thing, "off label for weight loss, nope, not happening" and here's the Yale doc saying, "she has metabolic syndrome, every page of the notes says metabolic syndrome, the metformin is for metabolic syndrome so she doesn't get diabetes.  Do you just want to not treat her and wait for her to get diabetes or do you want to follow the pre-diabetes treatment protocol and give her the metformin now?  The Wellbutrin is a micro-dose for depression, it's not for weight loss." 
The Yale doc was actually rolling her eyes at whatever was being said, she kept saying "her weight is a moot point, you need to treat the whole patient, and she needs these medicines and it's a primary care situation, not a specialist situation."  So the gist of what I got was, apparently my PCP's office believes that any medicines I'm on are automatically to treat my obesity and therefore they want nothing to do with it.
By the end of the call even though  I was just sitting there not participating I was crying.  It's evident that my PCP doesn't care about me at all, that the APRN would ARGUE with another doctor and refuse me care is pretty much proof of that.
So I'm getting a 3 month prescription for all my pills and then apparently I am on my own.  The Yale doc doesn't have time for me and my PCP doesn't want to treat me.  I tried last year to find another PCP and no one was taking patients.  I might end up going to my mom's geriatric doctor, who IS accepting patients, that's how desperate I am.
If I was the only person in the world who was this fat and I was a total freak I could see all these offices treating me as a hot potato.  But I'm not.  What the fuck, seriously, I'm angry.


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