2.28.2005

i really hate HMOs

really.

so after all that legwork i did tryingto find a lab i could go to i was unsuccessful. i call my pcp, trying to do things the "right" way. that was last week. they call me today. they can't help me. can't get a referral for bloodwork. she said i should call my insurance company directly. *sigh* that's exactly what i didn't want to have to do. but fine.

so i suck it up and call. they tell me -- predictably -- that all referrals need to go through my pcp. yeah, thanks. tried that. i tell them my pcp told me to call them. she's like "that's not the policy" and i explain -- again -- the process i go through EVERY TIME when i need to get a referral for something slightly different.

it's so frustrating. SO frustrating. i try to tell them that i am tired of getting the run around. now what?

2.25.2005

not really anything new, but more real

so i spent ALL DAY with dr stuff yesterday. i was at the eye institute from 9-2. fun. nothign really new, but now it's offical, he really told me what the 3 things that my eye could be. that i "have symptoms of all of them but not a clear-cut case of any of them." i promised myself i wouldn't freak until he actually told me this info, even though iknew already, knid of round about. well does that mean i can freak now?

i have "a 30% chance of developing ms in the next 5 years." that's based solely on what he knows right now. once i get some other testing, another mri, that percentage might change.

he wants to do the genetic testing for leber's. sends me with the orders to the lab upstairs from him. so i go and wait like an hour for them to tell me i can't get it done there withmy insurance. i need an effin referral for BLOODWORK?!?! please.

so i go back to his office and tell them that. they say to jsut take it to whatever lab i susally use. i confirm with them that any lab can do this, they say yes. ok. so i leave, it's about 2 at this point. i haven't had lunch so i'm all woozy. but i figure, get this done and then i'll address food. so i drive back the hour to the lab near me that i usually use. sign in, all set. thent he lady comes out and tells that they can't do the test there. of course they can't. she was really quite nice and tried to find somewhere i could go. but can't find a lab that works with the place in massachusetts where the test needs to be sent for analysis. guess this disease is realy rare and they need to send it to this place. i spend hours there as we tried to find some way to get it done. i didn't get home until 5. that's effed up.

so i call my pcp today, to try to figure it out. haven't heard back from them. but they were oh-so-helpful-and-kind with my last request from them that i don't expect much from them.

my mom, in her kindness, tried to see if she could het tested for it since it's agene that's passed only from the mother. she tried, which i thought was sweet, but they won't let her. well, it was a thought.

did i mention that once the test is done i don't find out for a month? and i don't see the NO again for 2 months, unless soemthing changes. so basically there si zilch i can do right now but sit back and deal. they said my eyesight hasn't changes much sinc emy last visit although i did MUCH worse on the colorblind test. which you know, no big deal. it's not like color is critical to my profession or anything.

*sigh*

2.23.2005

trying to remain calm

so remember when i said that the NO in his email said he wanted to see me earlier than next monday. iw as told he dind't have room when calling his secretary. so that's fine, i decided to let it drop. alex took the time off. we planned for monday. dday. so i get a call at like 6pm last night from her confirming my thrusday appoinment. so i called back and was like, huh? and she' slike we needed to see you this week. so that's your appt and i'm like, um, i wish someone would have told me that! so now i have to go tomorrow. alone.

it scares me, to go alone, and it scares me that it couldn't wait until monday.

2.22.2005

baggage rears its ugly head

little background: alex ad i have like no issues. it's almost creepy. the onyl things that are problems are my exceesive tiredness which causes me to call asleep early most nights vs. his night-owl nature. the other being his loe of anime. now, i only say it's an issue because i know it saddens him that i do not share his passion for it. it fact, in most instances, i find it downright creepy. and he knows this. that said, i never keep him from watching it or doing whatever he wants to in regard to anime. hell, i've even gone to the convention with him the last two years. this year, on the way back we had a long discusion about hos i might be interested in it. we discussed the different kinds and wha ti'd be willing to try, etc etc. and i did say i'd try it. but nothing has come of it.

now, the rest of the background. i have some serious baggage. comes from being in a relationship with a very controlling, manipulative, emotionally abusie crack addict for 5 years. i am trained for situations that can be fabulous for days, months, even years then BOOM your car is missing, often totalled and you need to pay some dealer hundreds of dollars and you're tryin gto figure out how you got into the situation AGAIN. it was a really bad situation and i was so screwed up by it, it took a long time to get out and even try to get my head on straight. it left me lots of scars.

not long after i finally extracated myself from it completely (although it was really over way before then) is when i met alex.

so, you could imaigne, i have some pretty serious baggage. to my surprise, we got through most of it pretty quickly. i even surprsied myself on a lot of levels.

now all that said, we come to yesterday. alex and i are chatting in i as usual. he's "working" from home, due to the weather and i notice that he's kind f distracted. i make some silly comment about "oh you mst be watching anime" and he admits he is. and then i don't remember the context, but it was someting about his "anime problem" but i was clearly joking. clearly. then i said somethign to the effect that i notices he hadn't been too sad about me falling asleep as of late, ad that it msut be becuase that's when he sneaks off and watched his anime. totally harmless comments, or so i thought.

i get home about an hour later and usually, any day that i got home and he's already home he tackles me as i com ein the door. this is something that has been going on for a long time. i get home, no greeting. well ok. that's fine. he must be up int eh office still working. so i go up, open the door and walk in (we keep one odhte cats locked it here during the day) and i get THE coldest look that i've ever seen. so i'm like, "no hello?" i get the "i need to be logged in for 10 more minutes" without a second look. now this is truy unusual. no hug, no kiss, no hi baby, no stay in here with me, nothing.

ok. so i am starting to retreat. i have no idea what i've done at all. and wheni mean retreat i mena inwardly. i go and lie down on the bed and turn on the tv, tryng to figure out what's up.

he comes in and sits at the end of the bed. nowehre near me. this can't be good. i'm in total panic. i ask him "did i ddo something to make you so angry at me?" then it comes out. i made him feel like watching anime wa a problem and made him feel guilty for watching it.

now i'm stunned. not only becuase i really felt like i did nothing of the sort, and because his reacion was unlike anyting i had ever een before from him. i apologize and try to explain that i was joking. he says he doesn't want to talk about it. so i stop talking and he walks out.

now my point for all the background was now my fear/insecurity is kicking in. i'm totally retreating into myself, wondering waht i have done to ruin this. he's never been mad at me, and he's MAD. i don't know what to do but i stay in the room.

he eventually comes ack adn we try to talk but i'm too far gone at this point and i'm jsut in tears. like tons of tears. i refuse to get up or make dinner or eat or anything. for his part he handled me well, but my reaction freked him out big time. we never ended up comign to any conclusion last night. he basically just tried to hold me until i fell asleep.

we tried to talk some today, but it wasn't so good. and we both have plans tonight so will probably not get to talk tonight either. and i knwo ti's no big deal,r eally, but it scared me. one to see him so mad and two to see my retreat like that, that it's still in me.

so i dunno, but it's not pretty right now.

2.21.2005

weirdness

so my boss comes to me today and says that he was looking on our website today and saw my picture on it (from 2 years ago when i came back here) and was like we need to reshoot you, like right now. crazy. but let's jsut put those side-by-side shall we?

2.17.2005

i did a stupid thing

since i know it's optic nerve now, i thought i'd go and look up some symptoms of ms so i could see that it was not optic nerve related.

dumb idea.

the first thing listed is a bad eye problem. an optic nerve problem. that in 80% of cases is just in one eye.

i didn't need to know that. or know of the handful of other symptoms i totally have. even though it clearly says that none of the symptoms are specific to ms. i still didn't need to see that.

and to see that the test i had done on my birthday was for this very condtion. and that's the test that showed something.

this is information i really didn't need right now. i'm supposed to hear from the BO tomorrow to see if i can get sqeezed in before the 28th.

this is the kind of shit that makes you want to postpone a wedding.

eyes

well no real update yet. i realized yesterday that my left eye is starting to be affected as well. i've called the docotrs so many times that i really didn't knwo what to do anymore. then i remembered that i had the NOs email address. mmmmm. so i composed an email to him basically saying i was concerned that since i haven't been able to get anyone to give me vitamin a shots that irreparable damage was happening and that i was really concerned and sinc ei dind't see him for 2 more weeks, what did he think.

well, not only did he email me right back. within an hour. while he was out of state. he also knew my case, and the results of those awful tests i had on my birthday. i was VERY impressed. although it didn't give me much news, and after the happiness of getting the respnse wore off i started reading too much into his email. apparently the tests did show it's optic nerve problems and not retinal problems. in some ways, this is good, i take this that it has noting to do with surgery or vitamin deficiencies from surgery. that would have been retinal damage. but, i take that to mean that leber's is definitely in the running as that's optic nerve related. i need to check out of ms affects the optic nerve or the retina. i'd like that to be ruled out.

the only other thing he said was that there was "thing to consider now" that he "needed to discuss with me in person, and sooner than the 28th" yikes.

ok and i already know that alex is amazing and non-flaky and totally my partner for life, but the prospect of me going blind or having some awful disease would be enough to shake him, you'd think. especially before we're married. one of his brothers developed ms after the was married for a few years and his wife left him. not that i think he woould, but of course the idea of saddling him with this seems unfair to me -- if it even is that. you know what his response was after i foound out that it might be ms? he says to me that well if it is, it's still really early on. and you know, if that's the case, we should probably move up when we wanted to have kids before i got too sick. man. what do you even say to that? nothing i guess, it jsut made me cry.

2.10.2005

updating

oh man, what's new? what isn't it more like it.

surgery-wise things are great. in about 8 months I've lost about 135 pounds. i also have zero fream of reference for what i look like. before when i'd see photos of myself i'd be SHOCKED at how big i was. and it would depress me immensely and i'd hide the photos. i'd always make sure to be inteh back or out of the photo when it was taken. better yet, i'd always offer to take it. anything not to have to see myself in photos. now, i see photos of me an di'm critical, but for some reason still can't really SEE how far i've come. i know that sounds weird, but i hear most people actually take at least a year for their heads to catch up with their bodies. take this past weekend. it was warm and i wanted to wear my lighter weight jacket. this is the jacket i got maybe in october. it's the smallest size that you can get at a big-girl store. i couldn't zip it when we bought it, bu that was ok. i grabbed it out of the closet and put it on and stopped. i had to have the wrong coat. i literally checked. the sleeves were too long anf it was WAAAAAAAAAAY too big for me. like the you-can't-wear-it-it's-too-big-and-you-look-ridiculous kind of big. how'd that happen? crazy.

so other than needing to buy clothes every three weeks, it's been interesting. i also quickly lose the window of opportunity for clothes. take two old navy skirts i bought. too big. wore them each once. way to go.

in other helath news, i am tired all the time again. this comes and goes. headached seem to be a little better the last couple of months. the big thing is the eye. i'm really concerned about my eye. i guess it started this summer. two times the vision in my right eye was partially onscured and completley gray. very scary. happened twice, but only for less thana minute each time. so althoug it alarmed me, it was quickly forgotten.

then i noticed over the last few months that my vision seems to be getting worse. i figure, no big deal. my face is a lot smaller, my glasses must not be fitting right. i just need new glasses. makes sense, right? so i am going to me an eye dr appt when the whole sunject of lasik comes up. how i really don't want to have glasses for the wedding. great idea, right? alex says he'll front the money and i can pay it with the freelance check i'm getting. so i do the research, find wehre i want to go, we make the appt and go. they say i'm a fine candidate, give us costs, he leaves to go to work and i stay to do allthe furth testing. that's when the problem is found. my eyes are fine, but my right eye vision deteriorated in less than 6 months from 20/20 to 20/200. they can't correct it to better than 20/100 and tell me i have to go see specialists to find out the problem. of course i'm pretty upset about this. and concerned. there's nothing wrong with my eye but i'm going blind? fabulous.

then the insurance battles start. the lasik guy referred me to a neuro-othamologist at UofM. great. only insuance tells me it's out of network. ok. that's fine. so tell me what NO are in network and i'llbe happy to use that one. oh you can't? i see.

soi hav eto backtrack through my pcp, who sends me to a regular neurologist first. who sends me for the mri. and finds a dr i can see. i need to go to detroit to see the only other one in the state. fine.

so alex and i are leaving that appt when my mom calls. grandpa had a stroke, get on a plane. eye is forgotten.

i leave, spend a week and a half with him as he's declining rapidly. it was painful and hard and awful and i never want ot go through that again. horrible. although i am SO greatful i got to spend that time with him, watching him die was horrible. it's my granpa. i loved him so much. (and today is his birthday.) we buried him on christmas eve morning. i am greatful that alex was there and jon. that meant a lot to me.

so then i come back to orders to get an mri. an mri that the neurologist didn't think i needed. well ok. so i go do that. and that was horrible. i had a really hard time with it and decided that if i need to get another one i will need to be sedated.

i take the films to the appt with the NO. they can't figure out what i s wrong either. after hours of testing. they tell me my mri looks fine, save for some congenital defects (??). they need to test my vitamin levels (could be as simple as that), if those are ok, then i need to get some firther tests done to determine if its' optical nerve or retinal problems, they can't tell.

that was a friday. that saturday i get my blood drawn. tuesday mornign i get a call from the hospital to schedule the tests. wow, ok that was fast. guess the bloodwork was ok. then comes the week and half long battle to get insurance approval for the tests. approval comes on a friday at 4:50 for terts scheduled for the following monday. my birthday no less.

so i go to the hospital, on my birthday, with alex for these next rounds of tests that were jsut horrific. electrodes, giant contacts, movie screen, crazy stuff. my eyes hurt so much after that and i wa so wiped that i ended up going to sleep by like 8pm. happy birthday to me.

on a daily basis my eye is blurry, and i need to sit really close ot my monitor to see. color is hard, press checks are a nightmare and i can no longer drive at night. i'm dizzy a lot too.

i have not gotten the results of these tests yet, i go back on the 28th to the NO. in the meantime they wanted me to start vitamin a injections. sounds simple enough, i get b12 every month as it is, right? only problem, no one will do it for me. my pcp has been very uncooperative and downright rude, which i just cna't figure out at all. so i wait.

i'm trying not to freak out, but the two options they have presented me with are not ones i like. not one bit. either it's a gentic disease or MS. apparently my mri showed evidence of MS. great. but my visions issues arne't consistent with it. they are, however, with the genetic disease. seems like i have lumbar punctures and genetic testing in my near future. fabulous.

so i'm really trying not to freak out, but i'd also really like to not go bllind, so i hope all of this will be taken care of soon.

in other news, i'm getting married in 7 months. SEVEN MONTHS!!! sheesh. seems so soon.

my mom is coming out this weekend to go dress shopping with me, should be fun. aaron is also coming out to hang with alex. seems like he might move here. and live with us. it will be strange. but it surprisingly doesn't bother me. too much. right now. we'll see how it goes, he's here until wednesday.

ok, well, i guess that's a decent update for now. oh. that and i filed for bankruptcy, to clear out all the crap from the ex. and inthe process i ended up with a new car, go figure.

ok really, time to work now.