The first time I DANCED in two years

The first time I DANCED in two years
Dancing is pretty tiring, but I'm still gonna get dressed up and try

Saturday, January 30, 2010

New York City

New York City is where Dr. Vincent De Leo is located, the top porphyria specialist in our area. Hes good, I have to admit, he was even able to rush us to the best lab in the USA where a nurse promptly drew my blood in special containers, which will be sent off to another lab in Texas, which will tell us if I have genetic or medically induced or some combination there of, of porphryia-  though the doctor thinks I have one of the three genetic erythro-porphyrias: erythropoetic-porphryia. I always thought it was veriegate, but apparently my skin would not have the severe burning sensation that both my father and I have.
I loved how the doctor listened to my father too, even though it wasnt his appointment technically! I dont think Dad would ever make that kind of appointment for himself unless he was absolutely downright blistering like I had been... I was the one to say something about Daddy, and finally Dr. De Leo asked, "is this your biological father here?" I said yes, and he said,"well then he can talk for himself!!" haha it was funny, and I kept interrupting because I was just so very excited to be there and... Well I've learned if I dont say something when it pops in my head I forget it and so if I think its important I tend to just blurt it out no matter whats going on. And Daddy has Omi's soft, slow, gentle voice, and I'm not always patient with it. Omi said I always was rushing around, that I spoke to fast there was no rush. There always sort of was though, I would forget what the next thing I had to say was if I didnt say it fast enough. And if I get tripped up all is just lost, which is why I'm a giant hyppocite (spelling ack!) and hate people interrupting me!! So I do know I do need to apologize to Daddy =/// At least between us both the doctor got all the information right!
While I was in the city, I posted on facebook that I was "pissed off and stuck in NYC" or something along those lines, and I got several supportive messages. I'm really thankful for all those, though I dont want to type out all what happened twice, so I hope people just read it all here! Heh I was just getting frusturated, there was no parking anywhere, then the parking garage person thought he could rip us off. apparently people take your cars and park them for you, so you cant get them back unless you pay them exorbitant amounts of money. We were at a certain place for exactly twenty one minutes, but were charged twenty three dollars  to store our car. the sign even said it wasnt near that expensive, but what could we do cos we needed the car, it was freezing, I was in pain by then, and we were all tired. So Dad just yelled at the guy he knew we were getting ripped off and the guy smiles and says then dont come back (and another cuter guy brings out the car haha) and then we went home... but Dad still had to pay the money. The cops dont come out for that in the city, they spend their time on more serious crimes. But we were pissed, so Mom said write to the better business bureau. The idiot probably does it to everyone like my Dad said.

I was already having an icky day, cos when we went to the porphyria doctor- as amazingly attentive and nice as he was- the lighting was bright, and there were large window with sun streaming in. I mean, sure hes a dermatologist too but when a large part of your clientele are people who cant be exposed to sun or white light, have a milder-ly lit office! I joked he was trying to up the porphine levels in my blood for when he sent me over to a lab. Id already gotten a lot of sun exposure as Dad navigated the streets of NYC: I had to hold my parasol rotating it to block the sun and juggle my blackberry as I took pictures- A job I didnt do well, which I know is my fault, but I was excited to be in the city! haha. The brief flashes of sun exposure built up over time though, and it got to be absurdly uncomfy by the time we reached the office. Well, found "parking" for the office, I mean, thats what took so long.
I was really happy when night came tonight essentially. Tonight was the "wolf moon", it happens once a year, as the moon is the closest it gets towards the earth and it appears huge. I dunno do wolves actually bay at it when it is so large? To me it was better lit under that moon, that "wolf moon" than it was under the sun, but then under the suns light  I could hardly see it was so bright. I feel much more comfortable in.. well for me the comforting blanket of darkness. Though I'm aware how funny it sounds to use comfortable and comforting so close together, theyre clearly the best words I can use to sum up how I feel about it all. I spoke to my Dad and Mom about changing the lights this week and were going to try. Dad has an extended weekend but (today, since I was so busy yesterday with the city and didnt get home until eleven and then collapsed unto a plate of cold spicy sesame noodles mmh) hes taking my brother up to Conneticut to meet some girl Jason has been talking to he met online. Theyve been cyber-dating, and she actually seems really sweet, though I only spoke to her once breifly
Theres an add on television I cant believe I'm going to address. This thing called the "contour". It uses eletrical pulses to tighten your muscles and is a belt that goes around your waist that claims it is 600 times more effective at muscle stimulation than crunches without back aggrivation or effort. Its actually a TON like the hugely expensive largely European medical device the Electromagnetic Pulse Machine. One of my doctors has one, a leading Lyme researcher who wanted to perform a case study on me on the Electromagnetic Pulse Machine's effect on pain. It worked wonders, allowing me to get of Cymbalta, one of my pain medications, but caused the symptoms of several of my more dangerous medications to be heightened..unfortunately including their side effects. The side effects of several medications are seizures and  they increased exponentially, so we put the machine aside, until I can get off of the medications and then perhaps return to it. Hes doing me quite a favor, allowing me to do this free of charge- the Electromagnetic Pulse Machine can run for like, 400 dollars a use or more. And theyre absurdly expensive to buy if you want a good one, though it will save you a lifetime on pain pills... my only problem is I'm on so many addictive ones now if I stop cold turkey I could end up in the hospital or comatose. But hey, I'm off Cymbalta, though it was relatively mild compared to others... Only injectable painkillers are stronger than mine, there are no stronger oral doses that are safe I do not believe. At least not in my doctors eyes for myself. Anyway this "contour". I think the thing may actually be the one late night add that works! I know from when I was using that machine, the electromagnetic one I mean, the doctor said to do it until my muscles were jumping and it was almost uncomfy by wasnt. and it was great exercise as well, I did it on my stomach often. I honestly wonder if the "contour" couldnt help people with pain either... I'm sure it could, if it tightened up back, stomach and side muscles in people like me who couldnt exercise. Its much cheaper than the electromagnetic pulse, by like, tens of thousands, and so its something to strongly consider. I'm definately putting it on my birthday list, I'm curious about this one!

G'night Folks, hope youre all well

@>--->------ Jenny

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