it has been over a year...

and lots has happened. Surgical sympathectomies on both hands (resulting in much better Raynaud's control, as well as 6 massive and totally bad-ass scars), chemotherapy for my lupus (which totally helped my numbers- hooray!), a crazy toe infection that spread to the bone (osteomyelitis) that could NOT be killed off with just antibiotics, leading to a partial toe amputation. That one is still healing....there is a scab on the end that has to fall off, so until it does I'm not allowed to wear close-toed shoes on my left foot, because the surgeon fears anything rubbing against it will cause another infection. Great. Oh and I have had 3 blood clots in my arms due to picc-lines that were put in for antibiotics. I've not been at work all that much, but have been able to work from home a lot so I'm not completely broke and/or useless to CSC. Als, my dad recently returned home after having a crazy infection of his own that caused a major abscess on his spinal cord that had to be operated on. He had a second one later in the hospital stay, but that one was drained laparoscopically with no large wounds. After the hospital he was in a rehab facility (read- old people's home- super creepy) to build up his muscular strength and endurance, and now he has been released just yesterday, and is getting used to being back home. I am living at my mother's house because she feels that I don't take good enough care of myself, and when I have low blood sugars and things, it is too stressful for my father and younger sister to deal with. So Vivienne and I packed up our duds and moved to New London. It is strange, but we're doing ok. So that is the update really....not much else to say. I'm trying really really hard to keep pushing myself in PT and work to get better all the time, and I have frequent setbacks....but I think things will continue to improve if I keep a positive attitude. Fingers crossed!

in like a lion?

yea so it has been a while since I posted....sometimes I just get uninterested in blogging. whatevs. in any case, things have been crazy lately. STILL waiting on that damn job with benefits (though rumor has it the offer is imminent!) and my health has been in a state of chaos. Like 4 really scary lows in 2 weeks, insane amounts of exhaustion, crazy weight loss (we're getting to the 115 range) and a frequent inability to eat. Lack of appetite that is. I still don't know if I am iron deficient, or anemic (not the same evidently), I am definitely vitamin D deficient, and we discovered, luckily, that I have no cortisol related issues. And I wake up all nauseous and feeling weirdsville a lot. But I can't go visit my drs. and get tested for any of the things that could be causing my issues, because I'm uninsured. boo. boo. boo. so we wait and hope I don't just collapse in a heap of uselessness before I get made a job offer.

In other news, Kat and Chris have set the official date and location of the wedding: November 27, 2010, at Mystic Seaport. I personally love this idea because it is a historical location!!! I'm a nerd who gets excited about such things. And as the MoH, I do believe it is fair that I get a little teensy thrill out of the whole event. Tons to do before then lots of planning, bmaid dress finding, food selection, cake selection, flower selection, music selection etc etc. I'm excited for them though. I think it will be great.

The 'rents finally reached a divorce settlement, evidently g plans to move out of the house by Juneish, and p and I will remain here with the animals, allegedly living off of cat or dog food and keeping the heat turned down to 58. to conserve money. it is going to be so strange. I can't really imagine it actually. again, whatevs. I guess we'll figure that out when we get to that point.

thats all I gots. I know, booooring.

gloom & doom

Well, despite my best efforts and gearing up in my green makeup AND my #24 Darrelle Revis jersey, we couldn't pull it off. The Colts were too good. And you know, it WAS amazing enough that we made it so far, with a rookie QB and a rookie coach. AND this does keep our record pristine - every time we have made it to the superbowl, we've won it. (1 for 1) So now I'm all sad about it, to some people it is just a stupid game, but to me, it is much more. At least I get to watch some of my guys in the ProBowl- REVIS (yaaaaay) Mangold and Fanneca. So we'll see how that goes.

In other news, still making teensy tiny baby steps towards getting the full-time status that will ensure me insurance benefits, but it is a slow going process. Which is not good, since I have no coverage of course, and my health has taken a negative downturn. I've gotten down to 117, which is unheard of for me. It also means I've lost about 30 lbs in 3 months. And we can't figure out why. While most of it is because I do eat very little because I have no appetite, the rest just seems to be too much to make sense. My blood sugars haven't been that high to contribute to that. So we are concerned. Especially in combination with other symptoms: severe night sweats (drenching) often without fever, occasional fevers over 100, random mysterious bruising, nausea and lightheadedness. But I can't go get labwork without insurance. I can pay $205 for my actual dr's visit, but I can guarantee she will want a TON of bloodwork, and labwork and possibly even x-rays (to make sure there is no infection in my lungs or somewhere else). And I can't afford that on my own. It is like 1800 just for my standard tests, nevermind adding in any special things she wants done. So I really hope my stupid job would hurry the f up so I can be benefitted. Ugh.

I got a dress for the Symphony Ball that I am attending with my dad next weekend. It is a lovely shade of green. And today, I bid on this gorgeous vintage necklace & earrings set that would match the dress PERFECTLY and look so pretty. I hope I win and then am able to get it overnighted so I can be sure I have the piece in time for the Ball. I'm going with the classic gringoleth look. (have you read Gawain and the Green Knight? then you know what I mean) so I'm borrowing my mom's gold shoes, the green dress, the jewelery is gold with green stones, and then provided it isn't raining, my white fox fur coat. Yes, I have a fox fur. Because for my 25th birthday, my mom gave me the coat which she inherited from her Aunt Gladys, and I have treasured that coat since I was a very small child, so now it is mine. And since it was made back in the day, I most certainly do not feel guilty. I personally did not slay any sweet little snow foxes. I'm just trying to stay warm and stylish. And it is SOOOO soft. So I'm looking forward to that.

That is pretty much it. Have a 24-hour theatre project coming up so that should be interesting.

perhaps the same bird echoed through both of us

Yesterday, separate, in the evening.

I love Rilke. I need to dig out my book of his poetry and immerse myself in his liquid sweet words. After having seen Abs' sweet black-eyed susan torso tattoo, I am sorely tempted to get a line of Rilke snaking down my side. But only if I stay thin. So maybe, if in 6 months I am still this size, I'll consider it.currently at work during the slowest week ever- ShutDown. Almost no EB people at all (or at least that we can see, I'm sure there are some in the Radcon areas that can't be left unsupervised) and most of our people are out also. I've been bringing books to read, already got through Princess Bride and my huge Omnibus of Irish Folk & Faery Tales. I brought in Cold Mountain, but it hasn't really pulled me in, and given that my eyes are dry and sore, I am not motivated to read it. So I read some news online, and perhaps will read some Hans Christian Anderson fairy tales online later.

Tomorrow at midnight, a new decade begins. 2010. Madness. In which my parents will indubitubly finalize their divorce, in which I may in fact become a REAL employee, and in which, quite early on, I will be turning 25. And Abs and EA, 21. Where does the time go? I can't recall what it was that I had hoped to have done or been by the time I was 25, but I am pretty sure I have not met past-me's expectations. Do any of us? When you were a mere 15, the age of Quincenera, what did you imagine for yourself in ten years? Does it count if you feel like in some ways you surpassed your own predictions? Even if you fell quite short of others? I never even knew there WAS Summa Cum Laude until college, never mind imagining that I could acheive it. Nor could I have guess that History was a subject that would invigorate my senses and lead me to write a senior project worthy of awards and acclaim. And a student volunteerism award? Forget about it. Ok, so I am single, chronically ill, living at home and working in a job that is intellectually far beneath me, in order to save money to pay off debts prior to entering a PhD program at some point. It is not glamorous, or even all that intersting. But what I have done, and thusly shown that I am capable of doing, are great things.

So perhaps 25 is a stepping stone. No, I might not have my doctorate and be doing what I love before 30, but I'll get there. What I have done tells me what I can do, and I aim to do it soon.

Happy 2010.

i feel it in my fingers....

I feel it in my toes....Christmas is all around me....

I like that song from Love Actually. That Bill Nighy, what a card! Well, looks like Bing has made the magic happen, we had a HUGE blizzard on Saturday, dropping a good 18 inches on us, so a White Christmas is indeed in store (the temps have been pretty frigid so it isn't going to be melting away anytime soon....) I am for the most part done with my holiday shopping, just have some gift cards to pick up for the twins. I didn't send holiday cards to people this year. No energy, no money for stamps, etc. I feel like a failure to my friends, but then, I haven't really heard from any of them (aside from Mangano) in months, aside from FB comments on random things. I wish them the best for the holiday season, I've just flaked out on telling them that. In other news, Ms. A got home today (after a major train delay) but I haven't seen her yet, allegedly she went over to Kat and Christophers to play Wii. Great. My Sunday night date with Heather was delayed due to my awful driveway (the plower didn't come till later in the evening) so we rescheduled to Tuesday. Tomorrow. I got her a bottle of wine Spellbound, some California Sirah. I also got her a box of chocolates, and a book about wine for the ladies. Hopefully she'll dig it. It is a "relaxing evening at home" type of gift. Speaking of which, I'll be doing just that this evening....wrapped up in an afghan, sipping a glass of milk and blogging. Seems good to me.

The weight has been holding in the 120s, though today a new all time low at 124.7. I tried to eat more today, even purchasing TWO donuts at dunkin, but only ate half a Boston Kreme and saved the strawberry frosted for later. Around lunch time, after eating about 1/4 of my sandwich, had a bad feeling in the digestive sense and could not make myself eat more. Around 2pm tried to eat a pear, but only got 1/2 of that down. And now, some milk. Probably better for me anyway to not mow down on every food item I see all the time.

Also- signed up for 24-hour theatre project with Intentional! Very excited, though it isn't till February 5&6. Should be fun- working with David ALWAYS is!

Happy Holidays to the blogging world!

high school?

This morning I weighed 128 pounds (unclothed btw). I haven't seen that number on a scale since I was in good ol Montville High School. A number of emotions ran through me. First, giddiness. How could I not be excited? Every woman likes to see the lowest number possible pop up on the evil scale of death. Plus, I can also see the weight loss, especially when I turn sideways, my waist looks a lot smaller. And my pants don't fit. Excepting some that I haven't been able to fit into in a while. But mostly I have to wear belts, and tighten them a lot (some pants just look stupid when you have to belt them that hard....like they bunch up and you look like you're trying to wear your grandpas pants). The second emotion was fear. Not fear because I'm concerned that I'm losing too much, or for a wrong reason (which is that I am currently unable to eat moderate quantities of food without feeling extremely nauseous), but actually I was afraid my mother would find out. Now, mind you, at the time I weighed myself this morning, she was still completely asleep....dead to the world. But I get nervous that somehow she will discover it. SHE does not think it is right for me to be losing so much so fast...that this whole nauseous all the time thing is bad. I don't think it is bad. Because in a sense, it has freed me from my constant eating problem. I used to eat a ton all the time. And mostly junk food. But now that I've been forced to limit how much I eat before my stomach starts to reject it, I have been forced to make better choices about what to eat. In order to get my nutrients, I have to choose to eat veggies and fruits and proteins, and not have big carb items or other things that will both fill my shrinking stomach faster, but also have no nutritional benefits. Occasionally I have a snack that is like a 2"x2" brownie square, or one of those mini cookies, but other than that I can't eat that much. The other factor is that I can only eat certain things that appeal to me. That is a challenge, because so often I will contemplate food options in my head, and almost instantaneously will have a gut reaction as to whether or not I'll be able to eat it. The other day for example, I ran through a lot of options, leftovers from Thanksgiving (stomach turn), spaghetti (stomach turn), leftover Chinese (huge stomach turn) and I realized there were no options that I wanted in my house. So I decided not to eat dinner at all, re-set my insulin pump so I didn't die overnight, and went to bed. I am ok with this whole thing. I like to think of it as my body suddenly realizing what is good for it and making sure that I comply. My parents, particularly my mother, have an issue with it. I think she is in fear of me developing an eating disorder, because of the nameless sibling having an eating disorder for so long and my mother knowing nothing about it. But she doesn't understand that I don't have a choice...it is extremely difficult to force feed oneself when you're nauseous....almost impossible for me actually. When I am hungry, I do eat. But when I'm not, I can't. For now, I'm just trying to secretly enjoy the svelte-ing process, and ignore my crazed mother.

my Thanksgiving feast with Stephen Hawking

I feel that perhaps the title of this post warrants explanation. I'll go back to yesterday. I returned home from work at approximately 2pm in the afternoon, after having spent the workday bored, because the little work I did on RACEs was done too fast. So I get home, and drop my things, and EA is on her computer doing something, so I don't interrupt her. Then Dad comes downstairs and inquires whether EA has written to tell me what happened at the Drs. She had not. So he explained. EA has polyps on her vocal chords, and in order for them to go away, she is on prednisone for 10 days, and must not use her vocal chords for 6 weeks, except in extreme times of need. When she has to work for ReachOut upon her return to P-Dam she will have to speak, because it is part of her job, but absolutely no singing, and as little noise made as possible. So I'm pretty good at interpreting what she is attempting to say through hand motions and lip reading. Because I'm baller. 

Fast forward to today, Thanksgiving dinner. Kat and Chris are here (Chris is TERRIBLE at reading lips) and mom's classmate Martin never shows up for dinner, so we start without him and are eating and it just isn't the same as normally, no Abs and a silent (and therefore significantly less witty) EA. After dinner and after K&C leave (taking their gassy dogs but NOT removing the obnoxious floozy chicken that Vivienne has become OBSESSED with) EA decides to use her computer to speak for her, because she can type it out and have the sound bite play it faster than having us guess what she is saying. But, the sound bite happens to sound like a quadriplegic person who types to talk....like Stephen Hawking. The voice makes her snarky comments about a million times more hilarious. George and I have been cracking up. 

We also caught up with Abs a bit, and GFred called, so that was nice to chat with him. I didn't eat that much at dinner, I tried not to take a lot because I knew I wouldn't be able to eat a lot, and even what was on my plate did not get finished. Later my thin sliver of pumpkin pie was quite filling, and I didn't eat a good portion of the pie crust. I do drink a lot of water and diet raspberry ginger ale though. And this morning, fully clothed, I weighed 131.9. After all the food, 133 even. yuck. My mother of course thinks I'm developing an issue but she doesn't seem to understand that 1- I am nauseous all the time....I can't help it. I'm lucky if I get ten bites of food in before the nausea becomes unbearable. 2- just because I like the fact that I'm losing weight does NOT mean I'm anorexic voluntarily...I just don't see the nausea as a problem really. IDK I think it is fine. And now I'm going to sign off because I'm tired.

I'm thankful for my soon-to-be-in-place job with benefits, my family and friends, and my health being much better than many lupus kids and diabetics. So thanks for that universe.