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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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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29
December

Let Her Cry

I’m not exactly sure how to structure this post because there are so many things I want to talk about, so if it is a little more flighty than usual, then I apologize.

I guess first of all, I should talk about Christmas.  My parents and I had our Christmas meal with Nana on Christmas Eve so that my aunt didn’t have to see me or threaten violence against me.  I cried almost the entire three or four hours that my parents and I were there.  I managed to almost have an asthma attack because of the crying and I messed up my internal system by getting so worked up.  (My temperature shot up, I started getting sick, etc.)  So, it wasn’t all that pleasant.  I felt bad for my grandmother because she’s almost 80 and she’s got a lot of health issues going on, so having to have separate Christmases was tough on her physically and mentally.  (She has a lot of anxiety issues, so this whole situation has upset her quite a bit.)  I also felt bad that I couldn’t even fake a smile or a good mood while we were there.

When my mom talked to Nana about how Christmas Day went with my aunt, uncle, cousin, cousin-in-law, and cousin’s son, she said that it wasn’t a really festive occasion.  Apparently, my cousin’s son went through Nana’s house looking for me and was sad that I wasn’t there to play with him.  I almost cried when my mom told me this.  I missed him, too.  He’s the one person that I have missed every second of this whole non-communication between my aunt and me thing.  He’s just so awesome and thinks differently and is so smart and creative, so being around him is always fun.  I feel like he’s a kindred spirit.

Nana said that my aunt asked how we handled Christmas without them.  When Nana told her that I cried almost the whole time, my aunt said that that was good because I hadn’t made any effort to apologize to her.  Okay, that isn’t true.  First of all, I actually did write a “letter” via Google Docs and sent it through my uncle’s email address with a note for him to please give it to her.  While the apology isn’t a complete acceptance of the alleged wrongs that I’ve been accused of committing, it is an apology for what I did do; a request that she cease this anti-Janet “campaign”; a request that she learn a little bit more about the physical and mental health problems affecting my mom, Nana, and me so that she could understand the context of the posts I write; and questions about why she made comments to my mom suggesting that I should be kicked out of my house, that I was a bad daughter, etc.   Anyway, the apology is the best that she is going to get.  I would’ve sent it to her personally on Facebook but  she blocked me from sending her messages after I sent the message chastising her for not contacting her sister (my mom) after the June 2011 hospitalization or any of the hospitalizations/surgeries.  I can’t do it via the phone (fear/anxiety issues), face-to-face is out of the question, I don’t have her personal email address, and I just don’t think sending a letter is practical.   I would post the apology letter on here, but she doesn’t actually read this site, so it wouldn’t do any good.

On Christmas, I wasn’t just upset about the downfall of that particular relationship.  I was also upset that my maternal grandfather’s only surviving sibling had unfriended me on Facebook, as had one of his kids.  These were two of my favorite people in the family, so being unfriended saddened me.  And part of me wondered if my aunt had anything to do with it.  I hate being paranoid, but it was weird how they unfriended me shortly after she had posted something on each of their walls.  That thought/paranoia, plus the knowledge that she keeps badmouthing me to Nana and (when my mom calls her) my mother, made me very frustrated because some of the key issues with being Borderline are the fear of abandonment/rejection and intense and unstable relationships.  I think anyone who knows me in any way, shape or form could cite any number of examples that I will go to a near breakdown state whenever things change, relationships end or near an end, I start feeling unappreciated, and when I feel alone, unloved, or unwanted. So, when I was crying on Christmas Eve, I was thinking about the familial implosion, possibly killing myself over it, and how I was somehow a horrible human being.  That’s not the kind of thinking that one should have at any time, but it is especially bad during the holidays.  And that thought process and the pain that it caused makes it harder for me to come up with a way to apologize over any of this or keep quiet about how I feel.  I don’t want to excuse my (sometimes) bad behavior, but I want my family to understand where it comes from.

(BTW – When my aunt tried to lay all the blame on me for this, Nana wouldn’t have any of that.  She told her that she [my aunt] was to blame, as well, and that she was the one who wanted the family split up. She’d also told her off on the 23rd when Nana mentioned that she had to fix the table for our lunch and my aunt told her not to worry about it with us because we “weren’t used to eating at a table” anyway. )

Aside from the Christmas tear-fest, I was going to share whatever the results were from my MRI and EEG.  I went to the neurologist’s office yesterday, but (after waiting an hour and a half) I was told that the neurologist had just left to attend to an emergency at one of the hospitals.  In a small way, I was upset over not finding out the answers, but I would rather not know what was wrong with me than know that my neurologist might have wasted time with me that he could’ve spent on someone who was truly in need of his help at that moment.  (And I know that neurologists are not exactly doctors who have soft-fluffy-type emergencies.)  Anyway, my neurologist was supposed to call me sometime later in the day yesterday.  He didn’t.  He still hasn’t called.  I could call them, I guess.  The only thing I do know from the appointment yesterday is that I had lost another 6 pounds, in addition to the ~50 that I’d lost in the last year.

Oh, I finally had my T4, TSH, LH, and FSH tests done yesterday afternoon, over a month after they were originally ordered.  The woman who did the test asked me if that was my husband in the waiting room.  I silently gagged and told her that that was my father.  She told me she was glad because she had been mad when she thought he was my husband because he should know better than to be with someone so young.  In a way, I understood what she meant, but it was kind of weird to have someone say that kind of stuff.  I mean, she doesn’t know me, so what was she going to say if she had been my husband?  How would she have gotten around her disgust?  And is saying that kind of thing a good idea when you’re sticking a needle into someone?  (It could cause someone to tense up and cause veins to ‘disappear’ in someone who, like me, is a hard-stick.)

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19
December

So Unhappy, But Safe As Could Be

Last week I finally went to the neurologist for the worsening ice-pick-through-the-brain headaches.  I didn’t actually see him, but I did see his nurse practitioner.  She had an appointment for an MRI and another EEG set up for me, and she suggested Botox for the neck pain that comes with the headaches.  I don’t feel very safe with that idea, because though I know the Botox shots are supposed to be safe, I don’t particularly like the thought of having some part of an extremely dangerous poison injected into me.

Anyway, I had the MRI on Saturday and the EEG is scheduled for tomorrow.  I won’t find the results out until December 28, aka three days after “Christmas”–I’m not acknowledging that Christmas is even happening this year.  With the disappointment of last year and the implosion of my extended family, which apparently occurred because of what was said by me on here in 2002 and was wiped off the site and the internet entirely by the epic fail/major scamming of INI Hosting, I am not acknowledging that Christmas will even be happening this year.  I mean, I was miserable last year because we got snowed in and then this whole family-falling-apart-over-the-words-of-a-severely-depressed-eighteen-year-old-version-of-me has me hesitant to acknowledge that my favorite holiday is even going to happen this year.  It’s not like it even matters if I celebrate it or not.

Okay, I’ve gotten distracted on stuff that gets me all teary, and I hadn’t even gotten to the very best part of the medical news.  I’ve apparently lost about 50 pounds this year.  My secret, you ask?  Let’s see, eat at least 7 Cadbury Dairy Milk bars, 2 boxes of Crackerfuls, and 1 bag of bagels with regular whipped cream cheese per week & drink 1-2 Caffeine Free Cokes (2 liter variety, of course) per week, plus the occasional binge of chips, chocolate frosting, and various other unhealthy crap.  Oh, and have dinner that consists every night of the Stouffers, Walmart, and Marie Callender’s varieties of throw-in-the-oven-for-a-quick-meal-for-the-family.  And, last but not least, no exercising.  In fact, spend almost every waking minute of your life on the computer.  Yes, this is the way to lose 50 pounds quickly.  No wonder I always gained weight on diets.  I’m the opposite of normal.

Actually, I know that the junk food binge is not a good thing to do, but I’m still not ready to contact the gastroenterologist over this.  I mean, I’ve told him for years that regular food makes me sick.  But I just don’t think he’d believe that I would lose some mass amount of weight after eating unhealthy food the majority of the time.  I know that if I were a doctor, I would have a hard time believing it.

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11
December

I Think I Should Know

I feel like a little kid with her first headache. I want to whine and whimper about the pain. I feel like I should be acting pitiful, which is crazy since I’ve had headaches for over 2 decades now. I should be able to suck it up and deal with it. Of course, I wasn’t able to do that in 2000, when I had such bad “tension” headaches that I would spend long periods of time in my room with no lights on at all and nothing touching certain parts of my head. That was also when I had them to such a degree that even the school counselor thought I needed to be resting. The “tension” headaches then were one of the only physical issues that contributed to my dropping out of high school. The headaches that I’m having now are just as bad, and sometimes worse.

I think my neurologist appointment is this week. That should help me some. I hope he’ll have some ideas for what causes these awful headaches. I get migraines and even they aren’t this bad. I don’t think they’re tension headaches because, from what I’ve learned about them, tension headaches aren’t crippling. (I also think the tension diagnosis was crap back in 2000.)

The headache probably isn’t helped by the fact that I forgot to finish my (already late) dinner.  I had only eaten once yesterday before I started my dinner at almost midnight.  Then, I didn’t really like what I was eating (imitation crab salad with crackers), so I put it aside so that I could eat it once I got hungry enough to not care what I was shoving down my throat.  Well, I forgot to shove it down my throat until four o’clock, which was about 21 hours since I had actually had a legitimate meal.  I had been nauseous the entire time, but by four, I had started shaking, twitching, palpitating (it’s a word), and just feeling like shit.  My muscles felt weaker and I was almost in one of those moods where my body was either going to shut down or start making me sound like someone who’d been drinking for about 10 hours straight.  It was not pleasant and it was getting less pleasant by the minute.  So, I ate the rest of my dinner quickly, shoved some other high-carb crap down, and basically tried to swig anything that had even a slight amount of sugar.

My sugar doesn’t feel so low now.  Actually, it feels like I overcompensated.  So, instead of having the typical nausea of hunger, I am now having the gagging feeling that I assume children get on Halloween when they toss their twenty pounds of candy in their mouths without thinking.  Yeah, it’s that unpleasant feeling that was described in the episode “The Almost People” from Doctor Who:

I expect chocolate for breakfast. If you don’t feel sick by mid-morning you’re not doing it right.

Of course, mine isn’t from jumping on the bed on my birthday or eating chocolate for “breakfast” so it isn’t exactly the same, but it is pretty close to what happened, so it’ll do. And I guess it serves me right because I know better than to completely or almost completely skip eating meals. I’ve had low sugar issues for almost as long as I’ve had headaches, so I should know how how to not abuse my body in such severe ways.

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