6
February

Can’t and Won’t Are Different Things

I’m going to start this by saying that I love my mother and father dearly because I may say some things that indicate otherwise.

I’m tired sleep deprived.  I don’t get to sleep well very often.  I’m always doing something for someone, whether it is waking up every two hours to get my mom food and water or waking up every morning to wake my dad up (even though he has an alarm clock) or waking up to cook dinner for them.  I’ve become a mother to my parents, and that might be okay, except I don’t want to be their mother and I don’t feel like I can keep doing these things for them.  I can’t quit, though, because it isn’t a job.  And I try not to complain because I know that they both don’t feel well and I know that my dad does some things around the house that I can’t do.

Still, I want to quit.  I want to run away and hide somewhere where they can’t find me.  I want to leave and never come back.  And I know that that is selfish, but I just cannot deal with this any longer.  I feel like shit and I need to sleep, but I can’t because someone always needs me.  So, the more sleep I miss, the grumpier that I get and the worse I feel.  I try to point this out, and it is remembered for all of two seconds before I get my marching orders again.

My mother fell last weekend and cracked her ribs.  She wouldn’t go to the doctor for the first few days after the fall, but just kept whimpering like a hurt animal.  She said she couldn’t go to the doctor because my dad wouldn’t take her.  She hadn’t told my dad she needed to go, and he can’t exactly force her to go.  (He knew she needed to, but I don’t think he wanted to try to convince her.)  So, I told him that she needed to go, and I told her that I told him that she needed to go.   She went to the ER last week and found out that her ribs were cracked.  The doctor at the ER couldn’t give her any extra pain medicine (because she’s on one with an opiate antagonist in it), so he gave her Flexeril.

My mom doesn’t do so well on Flexeril.  Every time she takes one, she ends up sleeping through days and wondering around in a stupor.  She gets whiny and she gets more clumsy.  And this leads to her falling more often and to her making claims that we either don’t love her or don’t take care of her or don’t pay attention to her.

Case in point, she fell last night.  She had already fallen about 12 hours earlier and managed, with some help, to get up on her own.  (Keep in mind, when she broke the ribs last week, she got herself off the floor with absolutely no help.)  Last night, though, she wasted her energy holding on to a door frame during the fall, so she was too tired to try to get up when she finally completed the fall.  We had to call the ambulance.  Even though she was fine, other than that she was in a drugged out state and a little sore, she decided she had to go to the emergency room.  There was nothing wrong, but she needed to have tests run to prove that to her.

When my father and I were going to call the ambulance, she first accused us of not taking care of her and not loving her.  This was after I’d managed to hear her call (over Mims’ “Like This”), run to her, then run to my dad’s room and gotten him up, and we’d both spent about 30-45 minutes trying to help her get up.  My dad had tried to basically pick her up, even though she weighs about 100 pounds or so more than him.  I’d moved pieces of furniture toward her that I thought would help her get up easier.  My father was out of breath and worn out.  I was about to pass out or vomit or both.  But because we headed toward the phone to call someone else to help her, which she had asked us to do a minute earlier, she determined that we didn’t care enough for her.

When the paramedics got here, she enjoyed slinging some barbs at our expense.  My dad drove to the hospital at 3:30 or so in the morning, even though he has trouble seeing at night, so that he would be with her at the ER.  (I stayed here, as I usually do.)  When she got home, she had my dad fix her 2 breakfast burritos.  A couple of hours later, she woke me up with an order for a bagel and cream cheese.  And at about 1 pm, she asked me to fix her 2 small frozen chicken biscuits, her 32 oz. cup of water, and hot chocolate.  That wouldn’t be such a big deal if we had a decent microwave, but since the biscuits took about 5-6 minutes to cook, as did the hot chocolate, and I didn’t feel like I could waste the energy sitting down and standing up, I ended up standing up during the 12 minutes it took to do this.  A while after she had eaten that and had gotten up for a minute, I ended up having to move her back onto her couch.  And she was still in the “my family is awful to me” mood, which made it that much harder.  (Somehow, the moodier she is, the less cooperative she is.)  She even said it a few times, which I wanted to scream at her over.

I get that she is in pain, but she is stuck in this bubble.  She thinks that no one takes care of her, which is ridiculous.  We do everything that she asks for and she still gets pissed off at us.  And she’s doing more of her “I’m worse than you are” comparisons again.  She’d stopped for a few days, but she’s back at it.  If I tell her that I’m going to faint, I don’t exactly want her to try to one-up my statement.  I want her to say that I should go sit down or take a break or something that I would think a mother would suggest to their daughter when their daughter said something like that.  And, this may sound petty, she always seems to fall more (and have to go to the ER) when I have an appointment with a doctor or someone that I need to see.  She may not plan it, but it almost always happens that way.

So I’m frustrated.  And I’m sitting here with a splitting headache, and I know that I can’t take anything for it because my mom might need me and my dad is getting in his much-needed rest.  So I’m going to try to avoid talking to anyone on the internet until I get a little bit of sleep because, until then, I am going to be bitchy.

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20
January

A Pain In The Head

On Wednesday, I went back to the neurologist, after the office called me Tuesday afternoon and told me to show up at 3:45 the next afternoon. I got there at about 3, since my dad had a physical therapy appointment an hour earlier at the building right across the street. Being there forty-five minutes early wouldn’t have been a problem if I had been called back to a room sometime before 4:15. Of course, since it was a doctor’s office, it wasn’t humanly possible to be seen on-time. No, I didn’t go back until about 4:45 or, maybe even, 5:00.

After going to the exam room, I waited…and waited…and waited. Finally, the doctor came in. First, he apologized for having been too sick to see me before then. (I didn’t know he’d been sick.) Then, he went over the results.

He said that the MRI had revealed 5 white spots (aka: white matter lesions) on my brain. He said the radiologist report said there were 10, but that he’d only seen 5 legitimate ones. (The other five were apparently blood vessels and other anatomical parts.) He said that these were normal, especially for people with migraines. He told me, after that, that my EEG had some abnormal electrical activity, which seemed to be related to migraines. I asked him about my myoclonic jerks being worse lately–again, I was told it was the migraines. The dystonia is apparently due to the migraines as well. So, he basically told me that migraines are all powerful, evil problems that cause a hell of a lot of pain and torment for people.

While he was telling me about the results, he told me that he would’ve had the MRI results sooner except that, according to him, his computer just suddenly started writing other files over the disc the hospital sent him. This resulted in him having to get another disc. I’m not exactly convinced, but…who knows?

Anyway, I am now scheduled for a “BOTOX evaluation” because he said that he didn’t think that just treating me with pain medicine was going to cut it anymore. Apparently, I need something more permanent or long-lasting. (From what I’ve read, there is no conclusive data about the level of permanency of BOTOX injections when used to control neurological conditions.) I don’t know if my insurance will cover BOTOX. (I’m now on a Medicare Part C program.) So, I don’t know if I’ll be able to have it done or not. If I do have it done, then I can tell people I’ve had a nose job and BOTOX. Fun, fun, fun.

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14
January

It Goes All Around My Throat

Even though people on “the interwebz” know some of the most personal things about me, most folks don’t know very much else about me. In fact, there are a lot of things that I do NOT talk about on here that people might like to know. So, I’m going to try to post more often and post about the different things that people probably don’t know about me.

Let’s see…where to begin?

I don’t know that my family remembers my first words. I know I don’t remember ever liking to talk. Talking for me was always something that was extremely difficult. I’m extremely quiet. If you don’t believe me, I recommend checking my youtube videos. That voice you can barely hear is the voice that people in life have gotten extremely frustrated over. People have accused me, at times, of trying to be inaudible, but it generally isn’t something that I am trying to do. With the exception of whispering, I don’t generally try to go unheard–it just happens. Speaking is something that I don’t ever remember being good at. Singing, on the other hand, was always something that I felt more secure in.

My mom taught me the first song that I ever sang, “Tomorrow” from Annie. I would eventually learn every song from the musical, which I obsessively watched a video of as a child because of my love for the music and my fascination with one of the few redheads I ever really saw on television or in movies. (When you grow up in a group that only makes up 1-2% of the entire global population, you search for someone who looks like you that you can truly respect or admire.) I would move on from just singing along to Annie to learning all of the songs of Whitney Houston, Michael Jackson, Tracy Chapman, Janet Jackson, and Paula Abdul. I accidentally stumbled upon the “Like a Prayer” video on MTV, a channel which I wasn’t allowed to watch by myself until I was a teenager, and became fascinated by the song and the video. I remember watching that video before quickly flipping my television onto BET, which I was allowed to watch anytime and go to sleep to when I was small.

I absorbed music like sponges absorb water. It was something I needed to survive. It was something that was necessary for me to understand humanity. It was never a thing where I just randomly listened to music that was popular or had a good beat or anything. It was something where I needed to find music that was interesting or inspiring or just left me feeling like I needed more of it. I listened to lyrics and tried to understand them, even if I didn’t completely understand some of the lyrics until I was much older. Music was communication for me.

Even though it was communication, it wasn’t a very open form of communication for me. There were the occasional times when I would perform “I Wanna Dance With Somebody” for one of my preschool teachers, but usually the only people who heard me sing were my parents. I didn’t sing around most of my relatives. I didn’t usually sing at school in elementary school. Part of it was that I was extremely shy. The other part was my ever-present self-esteem issues crap. It didn’t help that when I sang for one of my friends in third grade that she told me that I had a “weak voice” and that I shouldn’t sing. It also didn’t help when I would volunteer to sing for assemblies and would get skipped in favor of some of my other friends. The answer was generally, “That’s okay, we already have [insert the name of one or two of my friends during that time] so you don’t have to.” It felt like a confirmation of that inner voice that said I was awful at everything. It made me feel like I was somehow “less than” other folks. Actually, it just reinforced that already-present feeling.

When I was in middle school and high school, I was in choir. It surprised everyone but me. My parents figured I would pick band, since I’d done well on the band’s music aptitude test. I wasn’t interested in band as much I was interested in singing. I needed to sing. I needed to learn to feel good about singing.

In sixth grade, the middle school choir had about 79 people total. Our director was on her first year at the school, and she just wasn’t going to have a choir that was so itty bitty. After the ensemble I was in got a Superior (a “1″) at State Competition and earned a medal, she used us a lot to recruit new members for the choir. We performed at the orientation for incoming sixth graders. We were also the group she used at a concert at a local health food store. When the 30 or so eighth graders moved on to high school, the choir didn’t lose any memebers. It didn’t stay at around the same number. It more than doubled. By eighth grade, around half of the school’s 650 students were in choir. (The other half were in band, with a few seventh and eighth graders participating in both.) Partly because of our excellence in recruiting, our teacher decided we needed to have special choir trip for the eighth grade (plus a few select seventh graders), so we ended up going to Chicago, instead of the normal trip to Atlanta. Actually, I ended up going on both trips that year. (My mom was the treasurer during the last 2 years, and had to do the trip planning, checking in of the choirs, and prep work, so I got to do all the activities.) So, choir in middle school was, for the most part, something I enjoyed.

If I hadn’t been so competitive and wanted to earn every single medal possible, it would have probably been a lot more fun. I always wanted a medal. I think earning medals was a way for me to prove to myself (and other people) that I was more than just the girl who you could depend on for the answers in class. I felt validated when I would get medals. I felt validated when I got into choirs like All-City choir. It felt like all those bad things that I had always heard from people or that I had thought about myself weren’t true. The only time that I ever really craved attention and real approval was when I was performing. I wanted to have something that people respected me for, because I always believed (and still do) that there was something fundamentally wrong or broken about me.

The competitiveness continued into high school, but it wasn’t as easy to get medals or go on trips or do the stuff that was so überfun because the directors in high school weren’t apt to take hundreds of kids to competitions or trips. The only trip I remember was a trip to Decatur, where we (oddly) stayed the night between Alabama Honor Choir rehearsals. (It was odd because Decatur is literally 40-50 minutes from my house. It was also odd because the trip was one I’d done in middle school and not had to stay the night.) The only competition I remember participating in during high school was District/State Solo/Ensemble Festival in tenth grade. It was memorable because I broke down after receiving news that I had gotten a 3 on my solo, while every other soloist from my school had gotten a 1. Even people (from other schools) who were utterly tone deaf were given at least a 2. I was given a 3 and one of the reasons listed was that I mispronounced 1 word (virgine) in the song “Ave Verum Corpus” and that mispronunciation was so horrible (a jih [like jib] instead of gee) that it knocked me down quite a bit. The two other people in the room with me, my voice teacher and my choir director, were floored by the other flaw he found in my performance: he said I was repeatedly off-key. According to them, I missed 1 note in the two songs I did. (The other song was “Art is Calling for Me” and he’d heard it the week before by a college student, who’d apparently done a magnificent job.) I was crying when I got the results, and was comforted by many of the choir students from my school, including one who I didn’t even think liked me. She said that she had been standing outside (they all had) and had heard me sing and that the judge was an idiot. This was something that people told me repeatedly that day, which (if I remember correctly) was the same day as my 16th birthday party. The next week other people, including ones who had never heard me sing, told me that the judge was an idiot. So, though I was utterly devastated by the result of that one competition, I did receive a little bit of a confidence boost from my friends. That made it easier on me when my tape failed to play Mariah Carey’s “Can’t Take That Away” in my eleventh grade English class and I ended up having to sing it a capella with no rehearsal. It is one of the only times I ever remember performing for an audience with my glasses on (I would always taken them off so that I didn’t get nervous) and being able to see the entire room. It was also one of the only times I ever felt completely safe performing.

When I quit high school and started going into my deeply depressive spells on a more frequent basis, I pretty much quit singing. I didn’t have the spark that singing needed in me anymore. So, I quit. And when I tried to sing along to a song on the radio a few years later, it felt like my voice had shrivled up on me. It felt like a voice that I had been using for years decided to quit working after I quit using it. I started giving myself voice lessons again and trying to strengthen my voice. It isn’t as strong as it once was, but it is a lot stronger than it was between 2004 and 2007. I now know that I don’t ever want to lose it, so I always try to remember to sing when I can. Just a little singing seems to keep it strong enough to stick around.

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13
January

It Never Ends

The neurologist never called back this week, so I’ve been sitting here with an ever-intensifying headache and no clue what the hell is going on.  And any time that I bring up that my head hurts or my neck hurts or that I’m worried about the results, I end up having my mom find some way to demonstrate that her pain is so much worse.  She sometimes gets into this tendency of making everything a competition.  If I talk about having some specific kind of pain, she can tell me about her experience with that particular pain (or a different type) and how it was so much harder on her.

I told her that I’d been having more problems with getting fatigued by barely doing anything and I brought up that some of this muscle fatigue had been going on for years (because it has, but I’d never really told her about some of it), and do you know her responses?  First, there was the comment that somehow she was hurting really bad (not worse than usual, though), which was followed by the comment that some of the fatigue I had was a result of my not enjoying doing certain tasks and must be because she never pushed me hard enough to do those tasks.  She basically just took something that was about me and shifted it into something that was about her and about my being lazy.

Speak of the devil! She just woke up.  And it wasn’t one of those June Cleaver-style good, sweet, wholesome greetings.  No, it was her typical greeting, which is her breakfast order.  I’m a damn waitress.   When I was a little bit snippy about getting it right away, because I was (1) I was in a lot of pain and (2) I was agitated (meaning, crying) after reading a post on an LJ community about my icon promotion technique, she got more rude about it.  She insists that it was simply a request, but if I hadn’t agreed to do it, then I know that I would have been bitched out for hours on end and I would have had to go through the whole “no one loves me” whining spree that she loves to dole out whenever anyone doesn’t acquiesce to one of her demands.

Can I please have one day in my life that doesn’t end up sucking?  Can I have a mother that actually takes into consideration that I’m tired?  Can I be able to do things that I like without having to feel bad or angry or sad or upset about it?  Because if I don’t have a good day (or even an okay one) soon, I worry that I’ll just completely give up on things.

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7
January

Unintended Anxiety

My head hurts. Actually, the back of my neck and the very top part of my back is the part of my body that really hurts. I was hoping that by now I might have a full-fledged answer for why I was hurting. I was hoping that maybe the test results would be in, and the neurologist would know for sure what the hell is going on with my head, neck, and back.

I had the appointment last week to find out the results, which turned out to be a dud because the doctor had the hospital emergency that he had to deal with. He was supposed to call that evening. He didn’t. I gave him the benefit of the doubt and didn’t call the rest of last week. I even waited until halfway through this week, just in case he was out or backed up because of the holidays. But a couple of days ago, I got tired of waiting and made the call.

I got a call back this afternoon. It was his nurse. Apparently, he was looking at my chart, but hadn’t gotten my EEG results back until late this week. I thought that was strange because of the appointment from last week being scheduled and me being told that my results were in that day. The nurse today couldn’t tell me what the results were, even though they finally had them. I wasn’t really worried about the results until I talked to my mom.

My mom was able to trigger my inner health-related panic attack voice. She said that if the nurse couldn’t tell me the results, then she must not have been able to read the EEG. She then said that that would be due to the EEG being abnormal in some way, so I started getting nervous. I don’t think she meant to trigger that anxiety, but I have this tendency to think the worst when she makes that kind of suggestion (because she is generally right about it) and I was sitting at home by myself in a bit of a panic. (My parents left for the grocery store right after I got the call.)

When they got back, I mentioned how nervous I was. At this time, my mom said it was probably no big deal and that she didn’t mean to scare me. I don’t know that my mom understands just how much this kind of thing worries me. I’ve talked about it in therapy multiple times before, and my therapist has told me to tell my mom not to make the comments because of the heightened anxiety it causes, but I don’t feel that it is fair to make my mom stop saying random things because I have an inability to deal with the comments rationally. It isn’t like my mom is trying to upset me or hurt me or anything. If anything, I think she may be trying to prepare me.

So, now I am going to try to forget about the whole panic-related stuff and have a relatively relaxed weekend. I bet that won’t happen, though. The neurologist is supposed to definitely call by Tuesday, so I hope that that does happen. I’m not holding my breath on it, though.

Oh, and, in a somewhat related note, my mom made a list on the first of all of the things that the neurologist (or, in one case, a different neurologist that used to treat my headaches) has diagnosed me with. I was kind of surprised at the length of the list. After she made the list, which is below, she told me why she made it. Apparently, the next time that my aunt starts in on how horrible of a person she thinks I am, my mom wants some sort of proof that my life is a bit more difficult than my aunt seems to realize. I mean, my mom and Nana have both tried to convey the physical and mental stuff I deal with, along with the stuff I have to do and (sometimes) choose to do, even though I have very little energy and always feel like crap or hurt. I think it’s basically her version of a wake up call.

The List

  • Migraines (actually, 3 neurologists dx’d this)
  • Chronic Daily Headache (2 neurologists dx’d this, including 2 of the three that dx’d the migraines)
  • Dystonia
  • Essential Tremors
  • Myoclonus
  • Vertigo
  • Tarsal Tunnel Syndrome
  • Degenerative Arthritis of the Lower Spine
  • Absent reflexes in parts of my legs

I think that is everything, but I might have forgotten something. Anyway, my mom seemed shocked at the length of the list, even though I’d told her about each of the things when the doctors would tell me what I was “suffering” from. And some of the things, i.e. the tremors and the myoclonus, are things that I was told I had quite a while ago. I think the tremors were diagnosed in middle school; while the myoclonus was diagnosed a couple of years ago, even though it had been going on since I was a very, very small child.

So, now I wait to find out if that list is going to be edited…

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3
January

The Battle Has Begun

I am in an epic battle with my sinuses.  (10 points to Gryffindor for the proper use of epic, please?)  They’re not only filled with gross mucus crap (sorry for the visual), but when I get that stuff out I start getting not only the dried blood, but lots of not-so-dried blood, too.  (Again, sorry.) I don’t know why they have suddenly decided to intensify the crappy feeling, but they have.  It may be that I’ve been without my Flonase for around a month now, which I could probably remedy by calling my family doctor (or my allergist or my ENT doctor), but I haven’t done that and I’m not sure if I want to do that.  Well, I would like to have my sinuses not feel like crap, but I’m not sure if fixing that feeling is worth the anxiety of calling any of the doctors.

I still do not know the results from EEG and MRI.  I do need to make that call today.  I was going to call yesterday, but I am pretty sure that the neurologist wasn’t there yesterday and I was asleep for most of the last twenty-four hours.  (I took 2 Flexerils at 4 AM yesterday, then took 2 more at about noon yesterday, and doing that kept me asleep most of the day and night.)  I would probably be asleep right now, but my iPod had reached the red section of the charged bar, so I needed to recharge it so I could listen to music instead of having bad dreams.

It’s pretty damn cold today, which shouldn’t be surprising since it is winter, but it is kind of shocking to the system since I was running around in shorts and short-sleeved shirts last week.  Right now it is 21°F (or -6.1°C) outside (unless you’re in some parts of Madison County where it is 9°F or -12.8°C), so I had to change from my warm weather clothes to my cold weather stuff. I wish that I wore socks right about now because that would keep my feet a bit warmer, but I don’t, so no socks for me.

Oh, I had a weird dream yesterday. It was one of the few bad dreams that I think that I’ve gotten while doing the listening-to-music-the-whole-time-I’m-sleeping thing. I’m not exactly sure how it started, but apparently, different parts of my family actually had money in the dream. My parents and I were living in this huge house in an affluent neighborhood, and the house was right across the street from Deb, Nana’s first cousin who was raised by Mama and Papa (Nana’s parents) after her mom died. Apparently, in the dream, Deb’s husband was involved with an organized crime organization, which would never happen because he is way too nice and too good of a person to be involved in a crime enterprise. Deb had apparently found out and gotten him to turn someone in, and when the group found out, they made him choose between his life and hers, so he basically ordered a hit on her. She was killed in the house my family lived in, which I apparently witnessed, but couldn’t remember because I had some weird form of amnesia. Anytime anyone would bring up her name or what happened, I would start crying or saying that it didn’t happen. It was very, very, very strange.

I had planned on making icons everyday during 2012 for my icon/graphic community, but I haven’t made any so far.  So, I need to make some today.  I was planning on doing some Colin Morgan on the 1st, Kate Bosworth on the 2nd, but I don’t remember who I planned on featuring today.  I guess I could make the first two and do some others today, as well.

Ugh, I need to not pay attention to Rand Paul making his dad sound like this über-cool guy.  I don’t like or trust either of them, don’t get the appeal of either of them, and don’t want either of them involved in decisions of the government.

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30
December

180 Days

Over Christmas, I got some money and, with the money, I got an iTunes gift card for $25, along with other things.  So, I went on iTunes yesterday and decided to complete the Glee: Vol. 4 album, which was going to be the first album I completed in the transaction.  Over the past year and a half, I’d purchased 10 of the songs on the album at their full price of $1.29.  The total price of the album is $13.99 and I had already paid $12.90 for those 10 songs.  Admittedly, I’d gotten them as singles, but that hadn’t mattered on Volumes 3 and 6.  So, I pressed the “buy the album” button and expected it to have a pop-up saying that I had already purchased part of the album and asking if I wanted to complete the album.

It never happened.

I went through my invoices and reported this transaction, as well as one for a purchase of Volume 7 that had done the same thing, which I’d purchased the singles for the first 3 episodes of the third season through Apple.  In total, I’ve paid for 14 songs that were on the two albums, as well as the full album price for the albums.  Basically, I’ve paid $46.04 for 2 albums worth $27.98.  And, though their Terms and Conditions page says that you can only complete albums within 180 days from the first purchase (which Volume 7 would be, but Volume 4 wouldn’t) , their FAQ says:

When you buy individual songs from any qualifying album, you can complete the album at any time, as long as the album is available for sale on the iTunes Store.

So, instead of being a legal scholar-type and going by the Terms and Conditions, I went by the FAQ like a normal lazy person. I filed a complaint on all the previously purchased songs, and guess how much credit I received over the issue: 1 song credit. While I appreciate that I got $1.29 of a virtual refund, I would have preferred that Apple admit that there was something fluky going on with the store and done the 14 credits.

And now I’m left with the feeling that I might not want to ever make purchases through the iTunes store again, which kind of sucks (for me) because it is so easy and (for them) because I do it so often and I have bought so many songs, videos, episodes, and movies from them.  In the past 3 and a half years, I have spent at (or around) $3516 (or 1/5th of my income for the same length of time) in the iTunes store.  Now, I’m sure that there are people who have purchased more than that in that time period, but, aside from the hacked account (and $20+ purchased by said hacker) and this one time, I would say that I have been a good customer.  I’m even so nice about iTunes/iPods and stuff that I won’t insult the company in front mine.  (Silly, I know.)

Ah, just got an email saying that I would get a refund. Good iTunes.  Now, I just wish I could take back the admitting to my dad how much money I’ve spent in the iTunes store in the last 3 years because he almost freaked out.  (Not that I blame him.)  Of course, there was quite a bit spent using gift cards purchased with money given for gifts.

 

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