Tag: Pain


A Pain In The Head

20
January

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.

3 comments » | Confessions, Sickness and Health

It Never Ends

13
January

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.

Comment » | Family, Icons, Like So Totally Me, LiveJournal

Unintended Anxiety

7
January

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…

Comment » | Confessions, Family, Sickness and Health

Let Her Cry

29
December

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.)

Comment » | 10 Years of Madness, Facebook, Family, FPS-Related, General, Holidays, Mental Health, My Family's Weirder Than Yours Is, Sickness and Health, So Damn Special

It’s a Blacked Out Blur, But I’m Pretty Sure…

6
November

I hurt. This is not news. I hurt in my head, back, and neck. Again, this is not news. I tend to have weird tastes in my mouth, have trouble being around any light, and need to be laying as far back as humanly possible in order to feel anywhere near normal. This isn’t news to me. This probably isn’t news to anyone who may have listened to me complain every day for the last, oh, year and a half. My mom finally started putting together my complaints the other day. (She’s been remarkably more coherent in the last few days and couple of weeks.)

My mom wants me to go see my neurologist because she thinks that it sounds like a CSF leak. I have been thinking this was a potential issue for about a year now, especially since I started getting some yellow fluid in my ears regularly after my sinus surgery. I don’t bring it up at the doctor because I honestly feel like when I ask about serious issues that doctors might think that I’m being a malingerer or something. I know that I might miss out on getting things fixed by not discussing them with doctors, but I don’t want to come off as a hypochondriac or an attention-seeking whiner. (I don’t like asking for help ever.) Besides, the issue with the headaches/neck and back pains being horribly bad and the fluid being in my ears isn’t necessarily a regular issue. It seems to come and go, so it could be nothing. It could just be random bouts of health crap. My mom thinks it is super-serious, though.

So, I guess that I shall call my neuro doc this week. I am also supposed to call my GI doc about my regular heartburn and my family doctor about my ongoing sinus crap. The more aware my mother seems to be about my health issues, the more doctors she seems to want me to contact. It’s nice that she cares, but I don’t know what good it will do for me to see the doctors. They probably won’t do anything and anything that do try will probably end up causing some other crap. I think I’ve truly given up on doctors at this point.

In other pointless news, Alabama played LSU last night and lost. Somehow, local news had a hard time showing any highlights of LSU from the game, but got in all of the Alabama highlights. Maybe it was a coincidence. Alabama fans are being excessively annoying on Facebook. Apparently, the same people who regularly like to give Auburn fans a hard time when Auburn loses or doesn’t win by a high enough score or when Auburn has a stellar player that Alabama fans don’t like (i.e. Cam Newton) do not want to hear that their team lost, didn’t manage to score a touchdown (Auburn did vs. LSU), and that the referees were actually being kinder to Alabama than they were to LSU. (It was in Tuscaloosa, so having Alabama-loving refs is not unheard of there.) Instead, they’re saying how the referees were being mean to them or that LSU was cheating or other stuff that they normally say when they’re feeling butthurt. I’m glad I’m no longer “friends” with certain people on Facebook (i.e. some family members and Alan) because the Alabama loss would have resulted in a lot of whining from them and even more unusual conspiracy theories.

Oh, I accidentally described (outloud) the attitudes of ‘Bama fans last night as being butthurt to my parents. I then had to try to, nicely, explain what butthurt meant. Ah, sometimes I need to remember that slang does not translate for members of some (older) age groups.

Comment » | 10 Years of Madness, Confessions, Facebook, Family, Friends, Sickness and Health

And For Your Your Enjoyment: The Handwriting Meme

4
November

(Snagged from Nonna, who got it from Caity, who got it from Liz.)

The Questions:

  1. Name/Blog URL
  2. Lefty/Righty/Ambidextrous
  3. Letters you enjoy writing
  4. Letters you dislike writing
  5. Write “The quick brown fox jumps over the lazy dog.”
  6. Write CRAB, HUMOR, KALEIDOSCOPE, PAJAMAS, and GAZILLION in caps.
  7. Write one of your favorite song lyrics.
  8. Write who should do this.
  9. Any last blurb slash note

My Answers:
yes, this is my actual handwriting
* – on number 1, the URL that got cut off was likesototally.me; on number 8, the name that got cut off when it was scanned is Bren
(I am sorry about the sloppy/crowded nature of my answers. I always seem to run out of room when I write. It probably has to do with my loopy writing.)

Now, I shall try to go rest my hands to get the cramping to go away.

3 comments » | Ashley, Bren, Geekery, Heather (TFL/Twitter/LJ), Internet, Kate, memes, Shelly

More Today Than Yesterday

28
October

Today was my semiannual appointment with the rheumatologist, aka the appointment that I don’t enjoy ever.  It proved to be as expected, though I think my parents think that I am partially to blame for that.  I was going to talk to him about a rash that I’ve had for over ten years, but that I thought he might know something about.  (The rash comes up on my cheeks and my forearms.  It gets worse when I’m stressed, angry, sick, tired, hot, or in a lot of pain.)  I didn’t ask him, though.  He didn’t seem all that interested and seemed to be taking the general “you’re not a doctor, so you don’t know about your own health” attitude that he’s had for a while now.

First, he determined that in the past six months I haven’t lost any weight.  While he may have a point, when it comes to the information he has, he doesn’t know that I’ve gained 30 pounds and then lost it at least once during that whole six months.  He drew a conclusion without having enough data, which I guess he thinks is okay since he thinks the only data is what is in his file.  (My whole life is apparently in that file, even though so much of it isn’t.)

Second, he asked how my sleep had been.  I told him that my sleep had sucked.  He started in on his “You can take 4 Zanaflex and Flexeril a night to sleep” rambling spree.  I told him that I couldn’t.  I’d told him this before, six months ago, but he didn’t believe me.  At the time I’d told him that I couldn’t take that much because I would get dizzy from the Zanaflex.  He told me, at the time, that that wasn’t possible because of the drug’s half-life.  This time I told him that it was because it dropped my blood pressure.  He said that I would have to choose between pain and lower blood pressure.  I tried to get across to him that this wasn’t just a little lower.  He didn’t understand until I told him the numbers that I had the night I fainted.  Suddenly, his advice changed. The advice became  ”take as much as you can” because I apparently had figured out my own limits.  Wow.  So, I’m not the idiot that I sometimes feel like I am?  I actually might notice that something is wrong.

So, this would be where I should have talked about my rash, but I was nervous and I was frustrated and I wanted to go home, so I didn’t tell him.

Speaking of my blood pressure, the other night it was around 130-something over 97.  I had slept in 36 hours before that blood pressure was taken.  I only checked it because I had a massively awful headache.  Today, at the appointment, my blood pressure was 127 over 74.  Apparently, the nap that I had this morning helped some.  Yay.

Comment » | Confessions, Sickness and Health

Back to top