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

A Perfect Union

Is the name of an add in my Herbal Magazine, from The add was just too fantastic to pass by... I've always been amazed with Herbal teas my whole life, especially the healthy, greens; the dried unfermented kind (unlike their sometimes more potent yet always unhealthier black tea cousins).
This add was essentially a compatibility chart, comparing peoples personalities to the teas that they drank. I decided to share it, it was just too delicious to pass by.
MANGO CEYLON: Those with dark inclinations and a lust for the mysterious will pair well with this aromatic cup. This perfumed, velvety brew enjoys a partner with a heavy palate, forceful nature, and determined spirit. Those with delicate constitutions need not sip this enchanted tea.
FIREFLY CHAI: This inspired amber fusion is looking for someone who soars to great heights with zeal and ambition. Someone who is daring and never misses an opportunity to acheive big dreams! If you truely believe anything is possible, this charmed cup is destined for you.
CHAMOMILE: This peaceful tea is looking for a steady partner who enjoys the delights of domestic tranquility. If you enjoy an evening of classical music amongst the sputtering flames of a fireside, than this tea would make the perfect companion.
JASMINE PEARLS: This graceful tea is best suited to those with an eye for elegance and a taste for grandeur. If your perfect day includes perusing art from the worlds finest galleries, than certainly count on this exquisite cup to be a sophisticated partner.
HIBISCUS HIGH: If you embrace your inner child with open arms and find yourself climbing trees and making cardboard forts in the backyard, this tea will be your best friend. Sunny moments of carefree merriment will surely entice this cheery cup.
( supports over 60 "extraordinary teas for your sipping delight.)
I'm fast turning into an advertisement blog it would seem though this is not at all my intent. I think I am a picky person: my ideal partner encompasses all of these personalities, and would probably enjoy all of these teas. I know I will never have the world, but I can still dream. I think theres some order to these personalities I would like "him" to possess, I mean, he would have to have lots of the personality that Hibiscus High demonstrates, and also the fine appreciation of art that Jasmine tea lovers apparently have as well. (oh and I do love Jasmine!) I love Chammomile too, I think it can heal anything .. or help anyway.. and that sort of comforting personality that a Chammomile lover possesses would be so essential to anyone who would have to deal with me since I am sick all the time and well.. Sometimes I do just really want a hug, or that fireplace and classical music--which by the way is completely reminescent to me of my Omi's house, so naturally a comforting thought for me in itself. I would rather the person have a fairly small amount of Mango Ceylon personality, I think I've had enough with men who are overly.. of that thinking and nothing else. A nice, healthy amount of passion is always wonderful, but I suppose I carry around a healthy amount of jaded-ness.
I must admit, I have never really been a terribly large fan of Chai. Which is also funny, since I am quite content to live a life of lower means as long as I am following my own passions. Money has simply... Never meant much to me. Art however has. Which I guess is really funny since I do so very much love Jasmine.
At the moment I could go for some mint or Peppermint tea: I have a fetish for jalapenos- pickled ones, raw ones, cooked ones, ones flaked into a delish peanut-sesame sauce (haha the recipe for which I JUST  emailed my mom) and my stomach is feeling a bit hot. I know we have some in the house- I'm not a terrible fan of the mint but it works.. I'm actually sort of wondering if it would enhance the feeling I already have... I like Yogi-tea's tea, they sort of have a tea for every ailment; Though their Stomach-Soothing tea does have peppermint, it also has cardamom and coriander which really do wonders as well. For some reason Doritos make me feel loads better. One of my friends downs Cheez-Its. A doctor told me that cravings were the body's manifestation of  needing a certain ingredient or thing that is in the item that one craves. Its so fascinating that the body knows what it needs and can tell its person like that... it just amazes me how well God has put us together, how complex we are.
Mom is putting the water on for some tea at Daddy's request. We have an amazing array of teas in our home, and I like to mix and make my own as well using a small metal ball my mother has that I put various herbs inside and let steep. I keep seeing this very interesting metal stick that would be able to do the same thing, just you put the herbs down the center of the stick and swirl it around that way. I havent decided if I like the ball or stick theory yet better, but I think you get more herbs in with the stick, so you could potentially get a more varied blend of different herbs.
I'm going to go... My Saturday night Boston Legal is on. Take care loves, hope you find the right brew for you.
@>--->------ Jenny

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

Friday, January 29, 2010


Thats a real good song, by Smile Empty Soul. One of my favorites, though currently Owl City's "Fireflies" is playing on repeat in my head... Fantastic accoustics up there. I wish my family would make some major household adjustments.
First of all to the lights. Yellow lights all through the house. The lights are killing me, burning me, restricting me to my room or -when I do venture out- having to be in the dark because no such lights have been installed. My family cant stand the dark... Except increasingly for my dad, who I suspect has the gene for the disease and now has a medically induced version of it, he has been exhibiting a lot of the same symtoms for a while. I tell him to stay out of the sun, cover up, but he ignores my advice. "Yeah?" and "mmh okay I'll try" when I talk to him, "you may be right" but he never does anything except watch himself suffer.
Well tomorrow... Correction TODAY, only its early hah, and I havent slept yet, I'm seeing a porphyria doctor in NYC. Then we can get the proper lining for the windows when he tells us what rays are bad, apparently they make very specific and picky linings.
Tonight earlier (ending at twelve thirty AM anyway) there was an "Law and Order SVU episode involving a man with porphyria. he was the rapist in this case (and got castrated and killed for it...) but I just thought it was so cool that a porph was on tv. I've never known another real one. The police had him under lights in the interrogation room and he was screaming until the doctor arrived and told them what he had and what was wrong, that he wasnt 'crazy' he was in pain. Well sort of crazy for other reasons...
I figured out what disease I had-Porphyria I mean- via television. I was watching "Castle" when a man with porphyria was on. They based the whole show around him and I was freaking out at the end, going "Thats me, thats me, thats me too!" The tea or purple colored urine, the hallucinations that Lyme doctors couldnt explain because they were too strong for the weak hallucinations Lyme causes, my skins reaction to white light or the sun's rays, so much more. Mom laughed at me as I grabbed my laptop, eagerly googling it.
She kept chuckling, and telling me I was being foolish, until I called her over to look at pictures that looked like they could be of my body, of my unusual blisters, etc. Reading things she had thought just.. weird but.. me, and always blindly accepted my whole life the peices began to fall into place for her as well. My father didnt want to believe it. It was the hype, I enjoyed the fact I could call myself vampire that was all.
That was a real slap in the face. I was just excited to know what was wrong with me! Hallucinations that had made me think I was nuts all of high school, and I thought the sun was always so prickly uncomfortable, never understanding those who enjoyed bathing in it, until it began severely hurting me and I knew something was wrong but never before that what. The almost now two decades of severe stomach pain, crippling during gym outside, which now I know why, since I never could understand it before, being that I would do Taekwondo or sports inside and be painless (depending on the lighting)... such a difference. It was the sunlight. As a kid I could push through. As a teen I had to go to the nurse or just let myself collapse. Sometimes Id wait until all the girls left the locker room and lay down on a bench, and if someone came up shoot up and pretend to tie a shoe. Somehow laying down helped me, I'm sure because the EDS was aggrivated when the porphyria was, being that theyre connected somehow and laying when I am in trouble due to EDS always immediately yeilds results. (are you kidding, this spell check is underlining yeilds, it doesnt have that in its dictionary? I hope I didnt get it wrong.)
I sort of think its essential to my recovery my parents buy new bulbs and change them. I know we will need more lights, because neither of my parents see well and I'm suggesting darkening the house, but I live here too, and for an example, I was sleeping nude on the basement couch, with boxes all over the windows to block sunlight (except for a crack I'll admit that did get the bottom of a foot that was hanging over the couch) and I woke up burnt head to toe, front and back. It was utterly miserable, and I dont want to experience it again soon. I suggested keeping the white lights but getting sconces to sheild me from the light. sconces placed artfully all over the house could add alot of light and could really be a great solution I think! The yellow light goes with the peach paint daddy bought for the hall and living room, and I dont think our kitchen, a beige array, would look bad bathed in yellow. The basement is blue, so yellow lights could make it green, which is my favorite color- though colors arent what I'm doing this because of or for (though God knows I would repaint that basement in a heartbeat!)
I feel like I have to bundle up and head out to go to the bathroom if I dont want to risk getting burnt now,  though I'm kind of ashamed (though clearly not too much or I wouldnt write this) to say I am too darn lazy and prideful to do so in my own home. I risk it, dart back as quick as I can, and then I complain at my parents. Truth being though, if I wanted I could go order the bulbs off the internet with my own checkbook, and then wrap up like a shi-ite woman and install them myself.
I envy their religious garb. Ive come close to ordering it many times, but I'm so afraid of insulting someone by accident! I need to ask a very religious Muslim person if they think it would be offensive or not if I wore their garb. I'm Christian..and Jewish.. I preffer to say Jewish though I believe in Jesus, but Jewish headcoverings dont really do enough in the way of  blocking the sun. Snoods and tieschels dont cover the front of the face, and Shabbat veils are fairly see-through (most of them) though there is Nooo way I would wear that out on a daily basis. After all, your Shabbat garb is suppost to be respectful, more dressy than your everyday wear which is what the veil would become if I wore it every time I wanted to go outside in the light. If I'm correct the Islamic woman wears her Hijab everytime she goes outside, not just a small headcovering, so I wouldnt be disrespecting my Shabbat, nor would I be disrepecting anything through Islam, though like I said I must find a devout Muslim to check that all out so as not to insult. We really are a politically correct country, are we not?
I have been bad about keeping my Shabbat, I will admit. It is something I also am not proud of, though I feel like admitting it holds me accountable to rectifying it. Tonight is Shabbat, and I plan on sneaking two candles in my purse in case we are not home in time. I have those lovely battery powered ones, but they are so cumbersome since I have the thick big ones (not battery powered Shabbat candles) so I dont know if I wont take some real candles and some matches justt in case. Lord knows my purse is huge enough, and my current Shabbat candles are worn down fairly small, small enough to hide. A nice shawl tucked away for prayer to change into, and I'm set.
I do feel bad about not having spent more time with God lately. He has blessed me so much. I dont know how ANY one could say he doesnt exsist, looking at the current crisis in Haiti- turned miracle as weeks later people are being pulled out ALIVE! I think the news said it was a stunning amount that nature couldnt account for. I've heard it called a miracle over and over again. They pulled a Hundred and Nine year old woman out, healthy and unharmed! And same with a 14 year old girl TODAY, weeks after the tragedy, though she was dehydrated and hungry. Along with many others today. It.. Makes me smile, at how every time Satan does something so Wicked, God turns it around and makes it so Good.. using this opportunity to turn thousands of hearts him as they realize the impossibilty of these people's surviving on their own, and how loving he can be. Look at the love demonstrated in all the people of the world, as countless countries and religions pulled together to help the Haitian people! Like my cousin said the other day when her neice was born, oh "God is good".
@>--->------ Jenny
:) that is a digress I very much enjoyed, as now I will sleep on a positive note. Update you tomorrow on what the doctor said! Goodnight lovs.

Leno Vs O' Brian

Perhaps it is my young age, but when this all came out, I sided with Conan. I viewed it as... NBC going back on a promise of a lifetime to O' Brian, and Leno betraying the friendship he had with Conan by selfishly taking back the Tonight Show. Most of the country I think thought along the same lines, probably since its a lot of my age group who is staying up so late watching the Tonight Show.
But I did not know all the facts. Oprah said and I quote:
"America has taken sides. And a lot of people are not on your side".
Apparently, in 2004 when Leno was the no. one in entertainment he was confronted in his dressing room by NBC people, informing- not telling- him that they were going to hand the gauntlet to Conan O' Brian, and make him the head of the Tonight Show. Leno admitted to being stunned and hurt- As would any human being who had an ounce of pride in their work- and requested simply to stay along until he became no. 2.
In 2009 thats just what happened, but NBC didnt want to let him go. After he had already announced his retirement, they made him leave a month early so that he couldnt go to any other station and promised him that he could keep his staff from his former show, just take a months "vacation" almost, and then launch right into the 'Jay Leno' show.
And of COURSE Jay took it, he was devastated hed just had the rug pulled out from under him with the "Tonight Show", he just.. was in my opinion a heck of a lot more composed than Conan was when as he called it himself his "dream" was taken away. Jay was competing against major dramas on other networks- thats what I always watched! He admits on "Oprah" to frankly not thinking about the fact that he was to be competing against them, he was just so excited to have kept  his staff, because they became like family to him (shown strongly in the last episode where he hosted the "Tonight Show" and brought out sixty-four children that had been birthed by parents that were staff members who had all intermarried during the duration of the show's exsistance. "Most people like to say that their company is a family, but I think we re really a family-"  and then he launched into an explanation of that last classic episode where all the staff offspring fathered during the show paraded out on stage.) ((Oh, long parenthesis, my former English teacher Ms. Gothelf would cringe. I think of her every time I realize I am using bad grammar, but I have trouble correcting myself because of the seizures. I had one-tiny- in the shower this morning...Ach du leibre, I digress pathetically!))
Anyway, Conan seemed to... throw a hissy fit of sorts to me. At the time I thought it was completely justified, but for God's sake, they tried to offer him a slot just a half hour pushed back, and it still would have been the "Tonight Show". His ratings were down 49%, Jays were down 14%, so it made sense to put Jay first though NBC had not initially planned to de-throne O' Brian as the host of the tonight show. I really see that as a fair thing for everyone. It got everyone out of the way of the dramas, and all it seemed to me that Conan was upset about was the fact that Jay was before him. He said that in one of his jokes, essentially: they gave me the "Tonight Show" and now they want to put Jay Leno in front of me! That makes sense!" Well yes, Conan, it did.
But Conan was a good diplomat too. I'm fond of how he stood up for his staff and fought to get them all severance pay, though i do not recall the amount, and I believe even gave them some of his own money. Then in his last episode he said he hated cynicsm (ack misspelling attack!) and asked the young people who had so strongly sided with him not to be cynical and anti=Leno, keeping up grudges once he was gone. I respect Mr. O' Brian SO much for that.  He choked up and so did I a bit.
Like Oprah said "I understood it the way you explained it, and there are sooo many people who didnt seem to.. I mean, so many people seem to be siding with Conan I thought, like, am I missing something here?" But she wasnt. It was media manipulation, and we've all seen it before. I feel bad for both Mr. Leno and Mr. O' Brian.. True I think one handled it a bit more elegantly and with a tad more decorm, but perhaps that comes with the silver hairs on his head and mere age.. Aren't the old suppost to be wiser and less rash?
I do think Conan was just a bit rash, I think he will regret leaving the "Tonight Show". In my un-expert oppinion, he let pride get ahead of him and when he learnt that his rival was suppost to be ahead of him it stung. The truth stings, like I said, he was down FOURTY-NINE PERCENT. His ratings almost definately would have gone up had he been on the later time slot as executives proposed.
I feel like this was one big crappy mess. With two victims Jay Leno and Conan O'Brian, and thats all that matters. NBC bullied around two of our most beloved comics, and then the media made the country take sides. Its a sad situation, but I'm glad to understand it..What really occured I mean. I hate thinking badly of people who do not deserve so.
@>--->------ Jenny

Thursday, January 28, 2010

Meine Engel

As real as "vampires" are, so are angels. Mine happens to be in the form of a huge housecat, Twiggy Nala. 'Nala' because of her Lioness-like appearance... shes a real beauty honestly, with her huge lamplike golden eyes. "Gelden Auge" I call her oft. She takes such wonderful care of me, and shes not even yet two years old. We share the same birthweek, though I do not know the exact day she was born.
She got her name due to her size when she was an infant. I rescued her at only three weeks from the shelter, starved, covered in diarreah, with ribs poking through her fur and her intestines poking slightly out her backside because they were so malformed and swollen due to the lack of mothers milk. She had been on dog food, which was so unhealthy for a kitten that shouldnt have been even weaned yet. Her ears were pitch colored with mites. She was only the size of my hand, and she was terrifyed of the world. It had abandoned her. She had been a dumpster baby, and she tried to go through my trash though I fast broke her of the habit. It took one time of my telling/teaching her how to use the litter for her to know how to use it, she is such a fast learner. I also showed her how to get up the four steps I built up to my bed, because she was too small to reach it. Now she can even open the door, and leap across my room, open plastic containers, and understand english commands better than a dog. She points to something if she wants it, brings a toy if she wants to play, fetches, and even runs up and wipes my tears off with her cheek when I cry. She makes her "are you ok?" sound as well, and also makes that sound every time I cough, sneeze, or get upset. I've listed out at least 70 sounds she makes and their english translations, though I know she makes more, much more. She has a sort of sign language of her own that shes taught me as well to help me know how to better communicate with her.
I was so ill when I first got her home... We both stayed in bed all the time. It was before I had gotten any treatment for my Lyme and I was dying, literally. She never left me. I never left her either, feeding her yogurt and goats milk through a dropper and talking two fingers- all that could fit between her hind legs, and rubbing her belly at night so she could sleep because it felt like pop rocks were inside her, and she was in so much pain. It was the only thing that helped. That and singing. Every time Id stop, shed mewl, and I'd have to start again haha until she finally really WAS asleep. She didnt like the ear cleanings either, and she cried, but she sat still. She let me clean her eyes when they got gunky, and her nose when it was too mucusy. She was only a baby, and some one had to teach her to keep herself up. Her least favorite was when Id wipe her tushy with a clean cloth or tissue. She didnt like to lick down there, and often she let it get dirty. She did lick it once, after she saw G.G., Jason's ticked silver-black english shorthair do so, but she made the most hilarious face, furiously scrubbed her tongue, and never did so again. Much to my mothers frusturation, she began to wipe her butt on the carpet and the back of the couch like a dog. We gave her her own little carpet to do so on which we frequently change, problem solved.
When she was tiny, I was often afraid to let her down around the house. I was grateful that the first few weeks she was afraid to leave my room unless I was with her. She was so small, when she would disappear under my dresser I was sure I would never see her again, like Alice in Wonderland and the rabbit hole. But she always came out. She got stuck as she got bigger, which lead to me leaving the drawers out in the awkward phase in which she was small enough to get under but too big to get out from underneath. Now though,  at a size bigger than my torso and probably related to a mountain lion somehow since she is STILL growing, she cant fit at all which is fantastic since I dont have to worry.
See my mother had this beloved cat named Hermit. Hermit passed before I was born, but I've heard so much about her, and apparently she resembles one of my beanie babies quite closely. lightning-like bolts of dark gray all down her head and sides and a gray body with...eyes a color my mother cannot remember. I cannot imagine forgetting Twiggy's eyes, I hope I never, ever, ever do (speaking of, guess who walked in and is staring at me from the new box&complimentary bag I gave her!) Hermit passed away when she got stuck behind a bookshelf, panicked, and wrenched her neck and broke it. Thats why I panicked about Twiggy getting stuck always. My bed is far away from the wall because a "game" she liked to play (with a huge grin on her face) was climbing up the side of my bed by pushing herself between it and the wall. I always had to help push the bed away because her squeals of effort.. Which somehow she enjoyed cos shed always come back and do it again.. panicked me. As an overbearing mother I heard squeals of despair and cries of beign stuck. Which she never was, she was just always trying to wedge herself in more. Finally I moved the bed away from the wall. Then we just played tag in the space, as she darted in and out from under the bed and I tried to tag her and she my hand before I could pull it back.
She got too big to sleep by me, and I thrashed around too much in pain in the night for either of us to get a good nights sleep. So I got her a Kitty bed on a scratching post- with two little toys to dangle on either side underneath!- that elevated it to the height of my bed and put it right adjacent. She was elated to have her own space, but she quickly outgrew it. It moved into the basement, where it fits G.G. perfectly.
I got the girls.. Twiggy really, this big bunk bed for kitties. It has a tunnel between two scratching poles, and then they support a large bed which fits her perfectly. The top bed is supported by only one pole and is smaller, though is the one they always fight over to sleep in. It looks out the window at night when I can open the curtain, though I rarely do... I do when they ask but I should more.. It has a blanket in it to keep it warm and the edge of the blanket drapes down to the bottom bed making a tent. Since the bottom bunk is on level with my bed, I can play with Twiggs easily when shes there, usually peek-a-boo or playing with a straw or something.. or when shes in or on the tunnel directly under. Since she rarely goes in the tunnel but preffers to sit on it, I store toys inside for easy access. Somehow it seems like I lose them all so fast again haha.
Moving on.. I taught mom the beginning steps of how to belly dance today! It was fun, I directed from my bed and she danced to the dvd. I tried to show her some stuff, and she was really starting to get a little at the end. I took a video when she didnt realize. I think it was very good for her self image, she is always saying how fat she is, when she isnt, and she just had on a sports bra and sweatpants then, and looked very nice- her stomach wasnt big, her hips were nice and curvy, her waist small, her breasts large. She looked hot! I sent a copy to my Dad's email hahaha. She even said she thought she looked good when she saw herself. She really did.
Twiggy lovvves my mom. She follows us both around like a puppy. She likes my Dad a lot too now, she was afraid of his giant looming height at first, but hes a sweetheart and very gentle and won her over with his being so tender with her. She likes his height now, because he carries her like a baby in his arms all over the house whn she rubs up on his legs. Jason took the longest to win her heart, but he did so with lots of playtime and snacks. 'you dont just get a cats heart, you have to earn it". I dont remember where I heard that, or read it. She greets him every morning, and they play often. She likes his lap, I think because shes big and hes warm with long legs. Dad wishes soo bad the cats would go in his lap, but i think he is too thin! he refuses to eat fried foods he needs to indulge once in a while haha fatten himself up just a teeny bit.
I'm exhausted. Theres loads more to Twiggy, but I'll tell it over time. Tomorrow I will.. don't worry be back haha :)
@>--->------ Jenny

Wednesday, January 27, 2010


I'm pretty ill. I've been bedridden for two years with full blown Lyme disease, complicated by the genetic disorders Ehlers Danlos type three, a collagen disorder that makes my skin, veins, and ligaments and mucous membranes thin, delicate and stretchy- causing P.O.T.S. (posterial othrostatic tachachardia syndrome) which is where my blood pressure drops dangerously low even when I would go to sit because of the stretchy-ness of my veins and their weakened state, pulling oxygen away from my brain and lungs. It at least makes my skin as soft as rose petals, though not quite as strong. Its very clear too. It scars magnificently, like a "zebra".
Thats what they call us, people with Ehlers Danlos, Zebras. For two reasons: our fancy scars all up and down, and because usually things are horses. Zebras are rare. And hard as hell to diagnose because they act like horses. But its usually just a horse, is what one doctor told me before this all began. Which is why the diagnosis of "Zebra", and Ehlers Danlos being THE Zebra one of my zebras was so funny. Oh Good God I wonder if anyone followed that.
I also have the disorder Porphyria, or Vampire's Syndrome a really rare disease that is intertwined somehow with E.D.S, though I don't really know the specifics of how. It makes it impossible for me to go into sunlight; I've experienced second degree burns and nerve damage through windows. When I go outside in daylight, I wrap up in pashminas, long sleeves and carry a parasol. We're in the process of getting special glass liners for our windows. I really just converted to nocturnal-ness though. However white light is almost as bad as the sun. Not as fast burning because its weaker, but it can burn me badly too. It can be so painful, and send me into a porph attack- which can be deadly. The only "cure" for Porphyria is glucose, severe porphs get glucose shots. Not too long from now I get to see a specialist, I've been fighting for that for a long time and I'm happy about that. See alot of medicines are very dangerous to people with porphyria, even tylenol, and its important to have everything documented properly, but I dont know what KIND of porph I am yet.. veriegate we suspect. We've ruled things out, but to do a medical ID bracelet properly I need that information. The lab we go to with our insurance screwed the tests up sooo badly when we tried to do it, and its a very painful test for me because I have to induce a severe attack. Last time I ate meat. Anything that had a heart makes the disease stronger.
Side effects off the disease are seizures- Which I also get because of the severity of my Lyme disease.. and I actually dont know which one causes them more, since I've had little whimpy ones for years and years and now they are sort of rabid-animal-paralyzed seizures. With reallyy bad headaches after. Severe hallucinations are another side effect. I've done a lot of very bad bodily harm during these hallucinations... attempted surgery to remove an imaginary malignant tumor, sliced and dug the top of my head open to release a demon, tattooed myself- then when I was no longer hallucinating I decided I didn't want a tattoo and gouged it out... Lesser ones I've listened to radios that have been off, and watched televisions that were disconnected. I've read books for hours when all that was in my lap was blankets. Severe stomach pain is another symptom. So are comatose episodes.... My brother gets a kick out of those, when I try to get out of it and it feels like I'm miles away trapped in a deep hole... cosy while I'm comfy there, but when I want to LIVE it can take sometimes twelve hours to get out, fighting like when I was back in TaeKwonDo and healthy to get to the surface. He enjoys helping me out of them, which is really great... Somehow entertaining for him, and I get to live again. My heart slows down to undetectable in those times. Yes, due to both Lyme and Porphryia I have an arrythmia, but this is just my heart going almost still its so slow, and myself going cold. Its so calming. Doctors have been unable to find my heartbeat in times like this before, when it slows. My breathing slows down too, so that it seems like I'm not though I am. This is how the whole "Living Dead" myth got started about Vampires.
I do have pointy teeth. I just... always have, my baby teeth were too, and so are my adult teeth, moreso, though now somewhat worn and a little chipped on the longest two and on front of the front teeth haha. I cant wear silver. Neither can my aunt, and to my knowledge she doesnt have Porphryia at ALL, though I believe I got it from that side of the family (my father's). Both I and her daughter, who has a related disease to Ehlers Danlos (which is related to Porphyria SOMEhow) have eyes so dialated we see better in the dark. My hearing- though this is due to the Lyme, is so amplified that it allows me to hear everything that goes on inside this house, though I really dont try, and try not to honestly, and my family sneaks around to get private conversations which saddens me. But it is cool to be the one they turn to to find the leak in the air mattress (which was smaller than the size of the dot over this "i", but let out a nice high whistle as it streamed out all the air.)
Thats what I am. But not who I am. I'm an artist, and I haven't let this disease stop my entrepreneurship. I'm working on my own card company, and have been for the entire duration of my illness. I sell my art freelance too, and prints of things I do. I'm a proud mother to my cat (yes CAT) Twiggy, whose name I'll explain next time in a blog dedicated entirely to her honor. I have few friends, and I value those I do have. I keep losing people as soon as they discover the EXTENT of my sickness, and so I admit to being jaded. My world is small, but I make it as happy and beautiful as possible and I think my life is good, despite the whole mentally and physically disabled thingy. I did Taekwondo for a long time and Lovedd it, though I've realized I'm never going to be able to go back. It was a huge part of my life during junior high and high school. I.... am lonely, but I have a good support system. Also I'm TIRED!
@>--->------ Jenny