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December 30th, 2008

two!? no way!

Just a Dream
you guys are going to be so sorry that i decided to start keeping up with my LJ again. two entries in one day? that's like, almost unheard of... i mean, i used to do it all the time when i was going to SJC 'cause going to an all girls' school will drive you insane and you need to vent. lately though, i haven't really wanted to share things (in case you actually do live in a hole and you missed it)... so the fact that i'm updating more than once a week, nevermind more than once a day, is pretty significant. at least i think so. sorry, i'm rambling.

when i updated earlier i was in a wicked good mood... well, i guess i'm still in a good mood, i'm just a tad bit worried now. don't worry, i'll get to it. i'm in a good mood for a few reasons. over the past few days i've been able to prove, not only to her, but to myself, that i intend to put up a hell of a fight to get us back to where we used to be. more importantly i've realized that it's not the end of the world, things have been getting better as i fight for them to get better... and they will continue to get better and stay that way as long as i fight and maintain. tomorrow is new year's eve and i actually made plans to go out. i think grams was even surprised when i told her that i was going to the cadillac ranch with meaghan for new year's. i'm excited about it.

mentally, emotionally, i am in so much of a better place. it's unfortunate that i'm a cripple and have nothing to do but sit around and be bored all day because now i actually want to get up and do stuff. i wanna hang out and joke around with my friends. i wanna go out and do stuff again, rather than hanging around my room and dwelling about how sad my life is. 'cause when you get right down to it, it's not that sad... i'm actually a lot better off than a lot of people. i've just got to stop thinking so much about what's wrong and rather do what i have to do to make it better. nobody's life is perfect, mine is never going to be either... but i do have the power to make it better and be happy.

i don't know where all of that came from... i really only intended to complain about the lupus, which i will now do. i was washing my hands earlier and happened to glance into the bathroom mirror only to discover that i had a very clear rash spreading across my face. so, i thought, maybe i'm just jumping to conclusions... it's my imagination. only it wasn't my imagination and denial wasn't going to make it go away. i very clearly have a butterfly rash spreading across my face from cheek to cheek. i had further proof that it was a lupus rash too... it's a semi-lesioned rash, which means if you were to touch my face (though i don't know why you'd want to do that), you can very clearly feel that the rash is there.

so, on her lunch hour, grams kept telling me to call rheumatologist. um... no. if i were to call rheumatologist about it she would just tell me that i should start taking more prednisone. i don't feel sick... yet. see, the problem is that when i get a rash, it's almost a sure sign i'm gonna flare within the week. sometimes i get lucky though and i don't. so, i'm gonna hope that this will be one of those times. if i start showing other symptoms besides the fatigue and arthritis pain (which is always there), then i will call rheumatologist. if i get sick, i will suggest raising the dose of the prednisone myself. until then... i'm just gonna wait it out.

'cause two can play that game.

good things... eventually

Spencer & Ashley
my stupid grandmother always insists on waking me up in the morning before she leaves for work. i've asked her a thousand times not to do it and when she refuses, i've asked her why she does it. her answer is always, "i want you to know i'm leaving for work." well, duh. it's not like i'm going to wake up and freak out because she isn't home. i'm not going to start calling everyone in a panic because i don't know that's she's GONE TO DO WHAT SHE DOES EVERY FREAKING DAY OF THE WEEK. sorry, i feel better now.

if i was a normal person, i really wouldn't mind so much. i would just roll over and go back to sleep. unfortunately, i'm not a normal person and due to insomnia and pain issues, i have a hard enough time falling asleep in the first place. so, i don't take too kindly to being woken up at any time to be told that she's leaving for work... 'cause i have a hard enough time going to sleep and then staying asleep in the first place.

which brings me to my next point. the pain is BAD. i know i'm going to have to start taking something. so, during the times when i can get my mind of certain other things, i've been wracking my brain for a solution to my problem, because there is no way in hell that i'm going to start taking oxycodone again unless i suddenly need surgery for whatever reason... even then, i'll only take it after the surgery for the recovery period.

anyway, i think i've come up with a solution. first let me show off some of my medical knowledge, 'cause i like pretending that i'm smart. narcotics are classified into five different groups, called schedules. schedule 1 drugs include such things as GHB and heroin. all schedule 1 drugs are illegal. schedule 1 drugs are incredibly addictive, and therefore dangerous because of it. this is clearly why they are illegal. then comes schedule 2 drugs. schedule 2 drugs include narcotics like oxycodone and dilaudid. schedule 2 drugs are also highly addictive, but are legal with a prescription. as much as schedule 2 drugs will kill my pain, i'd rather stay away from them from now on because of the reasons they are addictive. i don't want drugs messing up my head any worse than i'm already doing with my constant thinking. anyway... next comes schedule 3 drugs, which includes vicodin and tylenol with codeine. i might consider taking vicodin, but only if i really have to... i'd rather go another schedule down the list, to schedule 4.

because of all my wonderful autoimmune issues, i have a vast tendency to get things that include inflammation. i have been prone to getting costochondritis (inflammation where the ribs meet the sternum) in the past. when i've gotten costochondritis, i've gone to my primary care physician and she's prescribed something called proproxyphene, or darvocet. it kills the pain, but doesn't mess with my head, so i think i'm going to ask to be put on that. we'll see how it goes. i'm also considering asking APRN in psychiatry to put me back on provigil for the fatigue... which is not a narcotic but for some reason still falls under schedule 4 drugs.

just in case anyone else was curious (which i'm sure you aren't), schedule 5 drugs include things like lomotil. i'm well aware that only lesley knows what i'm talking about now.

for a while i wasn't really worried about my hip problems. sure, the x-rays showed that it was slightly out of alignment, but it didn't really every bother me unless it did that weird popping thing. so i was fitted with a hip brace to see if it would help anything... well, anyone that talks to me knows that that did not work out. it didn't work out for a bunch of reasons... i couldn't function while wearing it, it keeps falling apart because it's not made to do what orthopaedic surgeon wanted it to do, and oh yeah, my hip still kept popping even though i was wearing it. so it wasn't doing its job anyway.

well, now i've got a real problem. it's been about what, four months since i've had it replaced? well, i pretty much wish i had never had it done now. the range of motion is worse than before i had it done and it hurts all the time. i'm pretty much starting to panic about my appointment on the eighth. i love appointments.

i know that i've pretty much been complaining through this whole entry, but believe it or not i'm actually in a fairly good mood today. maybe it has to do with the fact that this year is ending. i've already started to make the changes, but i'm gonna call the new year, "new beginnings," 'cause i'm totally demented like that. i can title things if i want to.

there are all kinds of things that i want to happen... i could probably write a book on it. sure there's one thing in particular that i would like to happen and i have no idea if it will work out or not, but it doesn't hurt to hold on to some hope, right? all i know for sure is how i feel and things are a lot different now.

hmm... i may be in a good mood, but it's still going to be a long and boring day. damn.

December 19th, 2008


Rachel & Luce
guys, i'm excited. this is somewhat unusual, as i usually dread christmas. it brings back a lot of really horrible memories for me... and i'm sure for the rest of my siblings as well. i honestly don't know what specifically is different this year... it just feels different.

i'm more excited about the new year, though. i'm hoping it'll be a year of new beginnings... or in a certain case, a chance to start over. of course, there are no guarantees there, but i'm not gonna let go of the hope i have. i'm in a much better place now, and i hope that when she is, she'll give me another chance.

i'm finally starting to get my life back on track. this morning meaghan called me and asked if i wanted to go grab some breakfast with her. i told her to give me a few minutes to get dressed and she met me downstairs outside my house. it was good to see her... i haven't in so long. she's still driving her jeep cherokee as of right now, but apparently she bought a BMW what she'll hopefully have by the new year. we might go to the cadillac ranch for the new year... i really don't want to spend it by myself while grams passes out before the ball drops. trust me, it's nowhere near as entertaining as it sounds... oh, wait, yes it is.

the snow is really coming down. we definitely got at least an inch within an hour of the storm starting. grams got out of work at 2pm, but it took her 45 minutes just to get home. apparently we're supposed to get a bunch more snow within the next week, on top of this storm. looks like connecticut is definitely going to have a white christmas.

i need to take up a hobby, like scrap-booking or stamping or something. as of this moment, most of the time i sit around the house thinking all day... and while i definitely like the subject that's on my mind most of the time, it almost always makes me sad. the other day i was so restless and my brain wouldn't shut up, so i decided to clean my room. that never happens... which just goes to show how bored i was.

i should go and try to keep myself occupied somehow... the weather is making me think of a specific day last november...

October 13th, 2008

too poor to live

Just a Dream
so, my latest life adventure is of course trying to find an affordable place to live. it's not easy when i can only spend like $400 a month on rent and i have to find housing with people who are gay friendly. this weekend i sent an email out to a place that turned out to have three girls from Φ σ σ. okay, so maybe i could deal with sorority girls... okay, no i couldn't. they told me that they would be having sorority functions at the apartment... including parties. not that it matters, i never heard back from them after i told them i was gay.

today i sent out an email to another place and decided that to avoid all the confusion, i would just mention in the first email that i was gay. surprisingly enough, i heard back from them. now i'm waiting to hear back about arranging a time to go see the place. i was warned that my bedroom was really, really small... like, i could fit a bed and a small TV in it. so, i don't know about that... i don't want to move into space that i can't even move in. i guess i don't really need a computer desk, as i have a laptop, but i really had my heart set on buying a bigger bed when my final back-payment came in in march. also, i hope to god it's big enough to keep a dresser in there, 'cause where the hell am i gonna keep all my clothes? i'm not gonna live in a pantry, guys. i guess i'm getting ahead of myself though, i haven't even seen it yet.

grams called me today... she was really, really nice. i don't know why. she wants me to put my name into griswold hills, which is where i lived when i was in high school. i would love to live back there... plus it's low-income housing. it's not a dump though. it's far from it. so i filled out a thing on the internet for them too because i couldn't get through on the phone. i'll probably try to call again tomorrow anyway.

i'm really starting to feel better, psychologically. maybe it's the new anti-depressant that andrea barletta put me on. i really wish that someone would call me back about the counseling though. the sooner i get into counseling, the better. i'm not there yet, but i am starting to feel, i don't know... happier? of course, that may be just because i've gotten the hell out of my grandmother's house.

random fact -> i'm TOTALLY obsessed with taylor swift. i can't wait for her new album to come out on november 11th. i've downloaded love story. i really want to download white horse... i heard it on the season premiere of grey's anatomy... but i can't find it anywhere. it's funny, whenever me and missy are on the way to school and taylor swift or carrie underwood come on, i get all excited. yes, i am a sad person.

August 20th, 2008

cripple collection

Just a Dream
so, i wasn't all that excited to come home from missy's on monday 'cause grams is psycho, but i didn't really have much choice in the whole matter as i had another appointment with rheumatologist on tuesday and some pretty important stuff needed to be discussed. i don't really know how i would describe how i felt about yesterday's appointment... i mean, sure, i got some pretty good news... but i also got some really bad news as well.

i usually see two rheumatologists: dr. rothfield, the main rheumatologist, and another rheumatologist, usually a resident, that works under her. the resident is the person i see most often, but dr. rothfield makes all the important decisions when it comes to my health care. i'm pretty sure that the doctor i'm seeing right now is done with her residency, but as of fairly recently, and is one of the newest main doctors in the rheumatology department. her name is dr. carrie mihordin. i absolutely love her, even though i really don't know her that well yet... usually i can judge how much i'm going to like my doctors with the first or second appointment that i see them. she's just like dr. rothfield, only much, much younger. it's incredibly obvious that she truly cares what's going on with me and my health... she's not one of those assholes that only gets into medicine because they want to make a lot of money. she cares about her patients... this was only made more obvious when she had to give me my newest autoimmune diagnosis.

yesterday, i was diagnosed with sjögren's syndrome. dr. mihordin was obviously upset and uncomfortable telling me this... but she also seemed surprised that i wasn't taking it harder than i did. she knew i had done my research and knew exactly what the disease was and how it could potentially make life even more irritating than it already is, as i was the one that brought it up and wanted to know if there was a specific test they could do for it. not surprisingly, there isn't anything definite... just like lupus. however, there are certain things to look at and a whole bunch of them are against me.

there's no telling how long i've had sjögren's syndrome. i've been having very slight symptoms since at least february, but again, this autoimmune disorder is very much like lupus, meaning that it's treated pretty much the exact same way that lupus is. so, all the medications that i'm on for lupus were also treating the sjögren's... it didn't start really acting up until my rheumatologists have taken me off the cellcept and i'm being weaned off the prednisone. anyway, i had my salivary glands looked at, and while i was told it wasn't terrible, there were clear signs that they weren't functioning the way they should be. also, like with lupus, there is a specific antibody that they can look at in the blood to see if you may have sjögren's. apparently, as of my last bloodwork, that specific antibody in my blood was significantly elevated.

the main symptoms i was experiencing yesterday had to do with my mouth, nose, and throat. as of this moment, my mouth, nose, and throat are incredibly dry. they're like that all the time. i've taken to carrying a bottle of water around with me everywhere... of course, this doesn't really help when i run out of water. these symptoms are incredibly frustrating for several reasons. first of all, when your mouth, nose, and throat are bone dry all the time, breathing becomes very difficult. eating is often hard to do, unless i'm eating things that have a lot of liquids in them, or are liquids entirely. green grapes and italian ice have quickly become my foods of choice. dry foods like bread and meat are incredibly difficult to chew and swallow. ever have a tickle in your throat? my dry throat feels like that all the time, so i've developed a rather annoying cough. it's not always there, but it's frustrating all the same. wanna know one of the most annoying things about it? talking, especially for extended amounts of time, makes it much worse... so, i often have to pause to drink some water. anybody who knows me and knows how much i like to talk realizes why this is so devastating.

this morning when i got up, i had some eye symptoms as well. first of all, they were covered in this disgusting, sticky, gooey, stuff. yeah, it was gross, and i'm almost a little bit sorry that i told you about it. they weren't really dry, and still aren't... but they're incredibly bloodshot. i have other weird symptoms that i assumed were from the lupus, but are actually being caused by the sjögren's syndrome. first of all, i've noticed that i've been continually getting bruises on my legs for several months now, and i had no idea where they were coming from. apparently, purpura can be caused by sjögren's. also, the lesions that appeared on my legs after i got that sunburn on the beach are from the sjögren's. now, i understand how the lesions are linked to sjögren's, but i have no idea what bruises have to do with anything. another weird symptom that i don't understand 'caused by the sjögren's is chronic fatigue. this is probably the worst symptom of all... i'm ALWAYS TIRED and it's very unfortunate.

on the bright side of things, i was right about my white cell count. it has been elevated for a long time now, and rheumatologist has been keeping an eye on it. so, chances are really good that if i haven't gotten sick from whatever it is that's causing the count to go up, i'm not going to... especially any time soon. so, rheumatologist cleared me for surgery. now, i don't know if rheumatologist called primary care physician to give the go ahead, but i suppose i will find out about it tomorrow at my appointment with orthopaedic surgeon. i mean, the whole reason i even have this appointment is to pretty much make sure that all my paperwork is in order... if my paperwork from primary care physician is still missing, then someone will make a call and everything will be all set. i can't believe that i'm having surgery in a week...

grams is still crazy, but she's been nicer to me since i got the new diagnosis, and she'll be nice to me the entire time i'm in the hospital and possibly up to three weeks after the surgery. it's weird... she treats me better when i've got some cripple situation going on. i say she's crazy, because after all this time, she finally noticed the lesions on my legs and asked where they were from. this was before i got the diagnosis, so i told her that i was pretty sure it was something called subacute cutaneous lupus... which pretty much is sunburn turning into lesions. then she started yelling at me that that was impossible because i had never had a symptom like that before and CLEARLY lupus patients don't experience NEW SYMPTOMS all the time. this is highly impossible, and if you know anybody else with lupus and they ever tell you that they are experiencing new lupus symptoms... THEY ARE LYING. you NEVER have new symptoms.

however, while grams doesn't seem to believe in new lupus symptoms, she readily accepts the fact that i could develop another autoimmune disease at any time BECAUSE of the LUPUS. i will never understand this woman, but i got into a huge conversation with her on monday night about how i showed a whole bunch of symptoms of sjögren's syndrome, and i thought i had it, and i was going to ask rheumatologist to have me tested. she was just like, "yeah, okay. that sounds like a really good idea." then my jaw dropped because i think i finally realized that i will NEVER UNDERSTAND this woman. EVER.

so, i've got a week left to have a bit of fun before i'm all boring and recovering from surgery. tomorrow i have an appointment with orthopaedic surgeon, then i have to pick grams up from work early so she can go look at a condo... or something. i really have to do my laundry and clean my room sometime before i go into the hospital too. for some of friday i will just be killing time... then i'm going to the homostead for crafts night. um... i don't know how i'm getting there, but i'll walk if i have to. saturday is lesley's twenty-first birthday party/celebration/thing. i don't know how i'm getting there or back either, but missy and i will figure something out. also during some of this time, i want to spend some extra time with missy... as six weeks is a long time. then i will come home whenever missy wants to kick me out of the homostead... though i should probably come home on monday night as someone from the operating department will be calling on tuesday and i've really got to talk to them.

they'll be telling me what time i'm having the surgery done and what time i have to be there for... then they'll take a bunch of information from me, like what disorders i have and what medications i'm on. then wednesday is the day of my surgery... grams is working, so she's going to drop me off, stay for a bit and then go back to work. i really hope that she doesn't stick around all the way up until i go into the operating room... she starts freaking out when they're putting in the IV and her being anxious will make me more anxious. she doesn't like the sight of blood and she's always freaking out whenever i have to go to the hospital and have a needle put in. even better, i'm going to request that they just do the central line and get it over with before i even go into surgery... central lines hurt less when they put them in because they use injections of lidocaine to numb the site before they put it in. however, while it hurts less, it's much more gruesome to watch. the needle/tube is much larger, and they have to use a few sutures to make sure that it doesn't come out... so, it's quite a bit bloodier to put a central line in than it is to just put an IV in. hey, maybe they'll get lucky and be able to get in an IV... and then i won't have to worry about it. i'm not going to let them try any more than three times, though. any more than that and grams would start being annoying and criticizing the doctors and nurses because they couldn't get a needle in... even though she's well aware that i'm the one with the horrible veins.

okay, well, i'm going to go. maybe i'm reading, maybe i fell asleep... who knows, but it's entirely time for me to stop talking now.

August 16th, 2008

i could have been famous...

Just a Dream
i would really, really like an answer as to why god hates me so much. i mean, sure, sarah came up with that theory that we must have done some really terrible things and pissed off a lot of people in a past life to have the issues we do in this life... i just wish i knew what i had done. maybe i was jack the ripper, or elizabeth báthory, or belle gunness or something. or... maybe god just had a giant list of names and was bored, so he closed his eyes and pointed at one and decided that he would ruin their life. sorry... i'm like, wicked emo today. also, there are people out there that have it much worse than i do... i just like to complain a lot.

my first complain of course has to do with my medical life. now, i'm probably gonna get real technical and use a whole bunch of medical terms here, so, if stuff like that frightens you, run away now. if not, don't worry, i will clearly explain what everything means.

i have leukocytosis. what the hell is that, you ask. pretty much, it means that i have a high white blood cell count. so, what exactly does having an elevated white cell count mean? well, really, i have no idea what the hell is wrong with me. i guess i'm just lucky like that.

there are four types of white blood cells: neutrophils, eosinophils, basophils, monocytes, lymphocytes, and thrombocytes (platelets). now, i don't which one of these cells is elevated... if i did, i might be less worried about it. okay, that's a lie, i'd still be a whole bunch worried about it, but i'll get to that after. i do however know that it's not my platelets. as everyone already knows i have a really high platelet count because i have no spleen and they always do a separate test for that.

if my neutrophils are elevated, that could mean i have some kind of infection, bacterial or viral. now, i really doubt it's a bacterial infection, because at the time of my last bloodtest, i was on antibiotics because the lupus causes me to have chronic UTIs. so, i suppose it could be a viral infection... though i tend to doubt it, as rheumatologist has told me that my white count has been elevated for months. if my eosinophils are elevated, it could mean i have a parasitic infection, asthma, or an allergic reaction to something. i clearly have none of those. an elevated basophil count would mean that either i have some kind of bone marrow related disease, like leukemia or lymphoma. let's be serious though... there is no way that i could have had cancer for this long, untreated, and not be dying. an elevated monocyte count would mean that i could have a bacterial infection, tuberculosis, rocky mountain spotted fever, monocytic leukemia, or chronic ulcerative colitis. again, i don't have any of those things. so, the only white blood cell i have left are my lymphocytes. elevated lymphocytes could mean that i have mononucleosis or chronic lymphocytic leukemia... i don't have those, but it could be elevated for autoimmune reasons.

systemic lupus erythematosus is an autoimmune disease where your body produces too many B cell antibodies. the antibodies then get confused and attack healthy tissues and organs. guess what kind of white blood cell a B cell antibody is? yeah, a lymphocyte. here's the thing though... i don't think the lupus is acting up either. i mean, i've had lupus for fifteen years now, i know when i'm gonna have a flare before i even start getting sick. so, i have a different, if not very unfortunate theory.

there are a great many autoimmune diseases that link together in some ways. for example, i probably wouldn't have fibromyalgia and raynaud's if i didn't have lupus. well, there's this other autoimmune disorder that rheumatologist has been wondering if i have. it's called sjögren's (pronounced show-grins) syndrome. you know how i complain all the time about how i have issues swallowing and my medications get caught in my throat? well, it's gotten worse... my mouth and throat are constantly dry. now it's difficult to eat dry foods, like anything made of bread or the like. i got a pretzel at the mall last night and almost choked on it.

sjogren's syndrome is very much like lupus. the lymphocytes can attack the kidneys, the lungs, blood vessels, muscles, and joints. however, it mainly attacks the lacrimal and salivary glands. so, the main symptoms are dry eyes and dry mouth, or both. i think maybe it's about time i start discussing my symptoms with rheumatologist and then get tested. now, i'm not saying that i do or don't have it... i'm just saying it's one of those possibilities that should at the very least be ruled out.

the reason i've gone on and on and on about my white blood cell count is because of my appointment with primary care physician last week. he hasn't cleared me for surgery yet... he's not going to clear me for surgery until rheumatologist figures out what's wrong with me and clears me herself. it's funny... i wanted to put off the surgery until winter break, but then i started noticing how really bad my hip is. i mean, i can go to get up after sitting down and then almost collapse because my hip is so weak and painful. it's rather horrible.

i have an appointment with rheumatologist on tuesday. so, i'm sure that the major topic will be the leukocytosis. then i'll head over to the lab where they'll take more of my blood and i'm sure she'll call me on with the results on wednesday... 'cause that's what they always do that when there's something wrong with me. that's probably a good thing, as i have an appointment with orthopaedic surgeon on thursday. i'm pretty much freaking out about the whole thing... it's like june all over again. rheumatologist told me right before i supposed to have the surgery that i was going to have to reschedule it. i just keep thinking about it... and i just have that feeling that it's going to happen all over again.

of course, i've been a wicked emo bitch lately, as my health isn't the only thing that's bothering me. my home situation just seems to be getting worse, and i'm not really sure why. grams just likes to pick fights with me... okay, i may have instigated the last fight, but there shouldn't have been in a fight about it in the first place.

remember how i got yelled at for kissing missy goodbye outside of my house? well, when colleen and missy came to pick me up to go camping last tuesday, i told missy not to get in the car yet. she knew what i was talking about... so, we kissed and then we left. we had to stop at the gas station around the corner from my house for ice, when my cell phone rings.

i looked at the caller ID, saw it was grams, and then debating answering becuase i knew exactly why she was calling me. of course i answered it. she starts yelling at me for "doing it again even though she specifically told me to NEVER DO IT AGAIN." then she told me that i was "rude and disrespectful" because there was some kid outside, across the street. 'cause god forbid that he grow up and thing that gayness is NORMAL. i would also like to mention that the people that live across the street from us are known for getting into very, very loud fights filled with lots of swearing that people all up and down our street can hear. however, the fact that i kissed my girlfriend, in front of a child no less, is just unforgiveable.

i hung up on her.

i don't know... there's always so much tension and fighting in the house. it's all kinds of stressful. we got into another fight the day before that was pretty bad. she had asked me if i was taking my laptop with me when i was going camping. i told her that would be kind of pointless, but if i was going to stay at the homostead after we went camping, that i might bring it with me. she then freaked out and started yelling about how we were going to end up homeless and it would be my fault.

i kid you not. see, she wants to move out and she told our landlord that we would be out by september 1st. of course it's my fault that she gave him a date before she even started looking at places. i would also like to point out that she hasn't been interested in a single place that she's looked at online, nevermind called to go over and actually see it. never the less, we will be homeless and it will be my fault. EVERYTHING is my fault.

i walked away that time, but a whole bunch of the time, because i've been an angry, emo bitch as of lately, i of course willingly continue to argue with her instead of just walking away. so, she started yelling at me again later that day for i don't remember what reason, but i'm sure it was stupid an irrelevant to anything. she started yelling and i told her that i was going to leave the laptop, but since she continuely treated me horribly, i was thinking of taking the laptop with me just because i wanted to piss her off. i really didn't think that one through, 'cause then she started yelling that maybe she would stop letting me use the car. i told her that was fine, 'cause the only thing i EVER ask to use the car is if i have a doctor's appointment and to the pharmacy... so, when i died because she took the car away, the blood was on her hands. then i walked away.

now, the logical thing to do would be to move out. i only think about it constantly, but i just don't see how i could possibly do it. i need her car in order to see my many, many doctors. i can't afford to buy a car and then pay insurance right not... especially not if i'm going to be going to school as well. plus there's the whole rent issue... i'd need a whole bunch of roommates in order to live on $600 a month. plus i would have to move out, like now. 'cause i've got guilt complexes where i can't have her sign a lease for a two bedroom place where she's gonna be paying a lot more for an extra bedroom and then just take off before the lease is up.

well, now that i've ranted forever and ever, i feel somewhat better. so, i think i'm gonna go take a shower and get ready for lillian's birthday thing early... that way, when colleen told me that she told me to be ready in a half an hour, when she really said an hour, i can't get yelled at.

PS... it's far more likely that if i was anyone of any kind of important stature in a past life, it's far more likely that i was louisa may alcott, since she had systemic lupus erythematosus, was probably a lesbian, and the only semi-real goal i have is to write a book based on my life sometime before i die.

July 22nd, 2008

when i got up this morning, i was in a good mood. i went to bed early last night and actually got a really, really good night's sleep. usually i don't sleep anywhere near that well, unless missy's cuddled up next to me. the fact that i was taking the car today put me in even higher spirits. i got to drive around with my radio blaring and grams couldn't come home on her lunch hour and pick a fight with me for being gay or whatever else was bothering her today. actually, today she also seems to be in a good mood. she sounded like it when i called her at work anyway. she has still yet to bitch for no reason.

why exactly did i call her at work today? well, that's where i'm going to explain how my good mood slipped away.

i had an appointment with rheumatologist at 10am. i had high hopes for it, as i've been feeling pretty good lately. okay, yeah, my arthritis has been bothering me a bit, but i figure that it's a slight flare brought on by the sunburn, or the fact that i'm going down on the prednisone so quickly, or even the fact that it's rained a lot lately. in any of these cases, it's nothing serious. there's the whole swallowing thing too, but that could just be more swelling brought on by a mini-flare.

when i went to last week's appointment, rheumatologist lowered the prednisone from 60mg a day to 40mg. today, she lowered it to 20mg. this is good, of course. not only does the prednisone kill off my bone tissue, but the other thing that i always dread is the bloating and the weight gain. since the prednisone went up, i gained like 10 pounds. i found this out last week. today, i was back down to the weight i was before i started the high doses of steroids (of course, i'm not going to share exactly what weight that is). my blood pressure is better too.

so, my appointment was going really well, as i expected. then rheumatologist told me that she wanted me to reschedule my hip replacement as soon as possible. my heart fell to the floor. this is going to cause me a whole mess of problems. first of all, she wants to get my prednisone down even further before i have it done. second, i have to get off of the immunosuppresives for a while before i can have the surgery done. so, she said i could have it done in four to six weeks from now. the timing is horrendous.

stupid, fucking medications. if it weren't for my medication, i could have been scheduled to have it done next wednesday. yeah, a week from tomorrow. sure, it would have sucked really bad because i wouldn't have really had any time to mentally prepare for it... but the timing would have been much better. see, if i had been able to have it done on july 30th, then i would have had five weeks to recover before school started. then i only would have had to find a way to get to school for a week. it would have been almost perfect...

god forbid something good actually happens, though. i'm totally screwed now. see, my surgery is now scheduled for wednesday, august 27th. this is only one week before school starts. one week. so, what am i going to do? i'm pretty uncertain, myself. i figure, i can still go back... i'll just skip the first class. nobody ever does anything but go over the syllabus on the first day of the semester anyway, right? then if i go back the week after that, i'll at least be able to walk and CCSU is pretty handicap accessible. my big dilemma is transportation. i have absolutely no idea how i'm going to get to and from campus, as i can't drive for six weeks. i am going back to school though. i'll figure something out... even if i have to live on the PRIDE couch for a month and wash up in women's room of the student center. you guys have no idea how serious i am.

tomorrow, i really have to spend the day cleaning my room. it's a disaster area. seriously. it's gonna be a whole bunch of not fun, though. i cannot wait for katie to come visit on thursday. i really need some time to not be stressed and just joke around with her. i'm sure there will be serious conversations too, but we have fun when we can get together. i made sure to take out money for whatever we're going to be doing that night, so it should be a good night.

funny story... okay, not really. i decided to take out money from the ATM at CCSU today because it doesn't charge me any kind of fee. guess what those bastards are FINALLY doing? they're repaving ella grasso boulevard. it's about fucking time.

alright, i think i'm done complaining for the moment.

June 25th, 2008

i LOVE feeling better

Rachel & Luce
you know what's amazing? i feel absolutely terrific tonight. it really is the most amazing feeling in the world. i had completely forgotten what it felt like to just feel normal.

after my solu-medrol treatment on thursday, i started feeling sicker and sicker. so, grams took me into the uconn medical center emergency department at around 6:30 that night. they put a central line in my femoral vein, gave me some intravenous dilaudid, admitted me to the hospital, did a CT scan, another MRI, an EEG, and a spinal tap... then told me there was nothing wrong with me. so, they sent me home on sunday.

on monday, the headaches got 13 times worse. why 13? i don't know... it seems like a good number. anyway... the headaches got worse, particularly when i sat up, or stood up. i couldn't be in an upright position for more than two minutes without feeling like the pressure in my head was going to make me pass out. i tried to take a five minute shower and i was convinced i was going to die. so, i went into the hartford hospital emergency department.

at hartford, they told me that i was showing classic symptoms of a post lumbar puncture leak. the spinal tap probably didn't go the way it should have just because i've had those back surgeries for the herniated discs... right in the region where they have to do the lumbar puncture. they couldn't get an IV in, no surprise, so they gave me an intramuscular injection of dilaudid, lots of coffee, and told me that i should lay down flat. they also gave me a prescription for ativan and fentanyl patches. so far, i've only been able to get the ativan and one patch... apparently they're still waiting for some pre-authorization from my PCP or something. i should be able to get the rest within the next few days, i guess.

after missy gets out of work, she's gonna come pick me up and i'm gonna go over. i'm all kinds of excited about it. i feel like i haven't really seen her in weeks. i mean, i have seen her, but it's been for like, one night at a time... and i've been sick, so my mind hasn't been all there. it's all very sad and i miss her like crazy. i think we're gonna get chinese food and then i'm going to spend a whole bunch of time just kissing her and cuddling her like crazy. like i said, i'm all kinds of excited.

i have other stuff to talk about at some point, but i feel like i'm in a good mood right now and i don't want to ruin it. besides, i really need to go get my stuff together... i'm all kinds of good at procrastinating.

that's okay though. i saw my PCP today and she told me that i'm suffering from migraines and severe sinus/allergy problems. she must have been right... because she gave me some nasal spray, some allegra, and some kind of migraine medication that dissolves on your tongue and i feel 10,000 times better. i had completely forgotten what it was like to live without a headache.

June 16th, 2008

more steroids!

Just a Dream
so, my schedule has changed a little bit for this week. i won't be getting that EMG done or seeing a neurologist. i don't really need to, they know that it's the lupus acting up. yeah, after being on 60mg of prednisone every day for over a week now, my lab results have only improved "slightly." oh, and i still have those nasty headaches.

pretty much, the prednisone isn't doing what it's supposed to be doing. so now i have to go into the hospital tomorrow at 2:30pm, wednesday at 1:30pm, and thursday at 1:00pm for intravenous solu-medrol. what's solu-medrol? it's pretty much the IV version of prednisone. it's going to be the least fun ever... just because i have no veins. well, it's in the cancer center, so i assume that they must have some pretty good phlebotomists down there. still... i don't know. also, the fact that it's three days in a row, with three different IVs... life is fun sometimes.

maybe someday soon i won't have to write an entry that's just updates on how depressing my medical life is.

June 13th, 2008

nothing new

i should just pack up my stuff and move to the uconn medical center. i spend so much time there already that it's like i live there.

i had another appointment with rheumatologist today. she changed the dosage of the prednisone from 50mg back to 60mg. i don't really think it's going to make any difference what-so-ever, but it won't matter, as i have yet ANOTHER appointment on monday. if i still have headaches on monday, i think it's probably time to start discussing that spinal tap i want to hear nothing about and maybe get on a new medication. with my the way my luck is going in the medical world, i'll probably end up on cytoxan and be bald by the end of the summer. go me.

next week is going to be the biggest pain in the ass ever, actually. i have an appointment with rheumatologist on monday, i have to babysit for allie on tuesday, i have to have an EMG done on wednesday (the fun electroshock test thingy), i'm actually free on thursday, and then i have an appointment to see a neurologist on friday. seriously, if i have more appointments the week after that, i'm just going to tell everyone to go screw themselves. i'm not bitter and angry, really.

that's okay, at least the weekend won't be so bad. tomorrow, grams, uncle danny, kelly, colin, the kids, and i are going to windsor locks to visit some family that we hardly ever see. it'll be fun, 'cause they're wicked awesome people and we barely ever see them. crap... i hope my grandmother's sister isn't going, 'cause that is so not something i want to deal with at this point. i'd end up hiding in the car and crying for the majority of the day. after our whole family reunion thing, ron is having his birthday at polo. that will be lots of fun as i haven't see hardly any of the PRIDE kids since school ended. i'm spending that night at the homostead and then sunday is my baby's birthday.

i had some other stuff i wanted to rant about, but frankly, it's really depressing and i just don't feel up to it at the moment. i think i'm gonna go lay down a bit and play some more metroid fusion.
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