uuuhhhh, thank you?

Ah yes, as promised, I am back writing about my discomfort at receiving compliments.  Though I am somewhat better, at least externally, about receiving them, there is a loop track in my head categorizing every single flaw, no matter how small, about what I'm being complimented about.  Up until recently, I would verbalize that loop track to the poor unsuspecting soul who is eyeballing the dwindling spinach rolls hungrily, hoping I'd just shut up, say "Thank you" and let him snatch one before they were all gone.  Ah, gotta love recitals!

Perhaps part of it is that I am somewhat introverted, and more often than not, being around alot of people really drains me.  I could be having a blast, but I have a very low tolerance for small talk, excessive chatter, and please try to not make conversation while I'm eating!  I do understand others' need for excessive talking, or maybe just excessive noise.  Silence can be lonely, and it forces one to make company with the one they're with: him/herself.  And for me, while I haven't quite made friends with myself, I can be content with the constantly running internal commentary, at least for awhile.  I do have to admit a certain love of blasting Bach organ pieces (especially Little Fugue in G minor, although there are so many other wonderful ones), or some other random piece of Baroque or Romantic music (even a few Classical and 20th Century ones since I'm so eclectic).  And the looks I get at times at stop lights are worth the fact that my hearing will never be the same again.

In any case, back to compliments.  Yes, I'll say it!  I have low self-esteem.  I don't think that I'm worthy of them, so I'll make every effort I can to deflect it, to point out the mistakes (and even though I have taken voice lessons since I was 9 and piano since I was 8, I regularly make mistakes), to even question the sanity of the other person, because surely they can't be talking about me!  Somewhat prideful, if you look at it the right way.  Pride says, "No, I'm right, and you're wrong, and I know better than you or anyone else!!"  And what else can I be saying when I start deconstructing my performance at every uttered, "Wow, that was beautiful!"?  "No, not really, it wasn't.  You didn't hear measure 5's trill, obviously.  It was more like my dad trying to do The Worm.  If you were a true music lover, you'd know that, wouldn't you?" 

Wow, a pretty crappy thing to say, eh?  And I have said things like that before (it's been some time, since I haven't performed that much lately, and have only done one solo in some time), and have hurt a few feelings.  And since I hate to hurt feelings, I have learned to bit my lip, nod and smile and just say, "Thank you".  The part of me that loves silence so much (or at least is very attracted and intrigued by it) is very grateful that I've learned this lesson.

So, what have we learned here today?  Don't talk to me while I'm eating, I think that Bach is AWESOME, and my dad should never try to do The Worm again!

It's my party and I'll cry if I want to!!

Yet another rotation of the earth around the Sun has occurred, and when I woke up, I remembered that I'm now going to have to remember a new number to put down on health information sheets at the doctors.  Yes, it's that time of year again, my birthday.

Even though I went to Mass for the first time in two months today (Happy Pentecost!), and I have to say that I was completely dreading the whole prospect on the way to church.  I still would rather have a root canal than go to church, but if I wait until I felt like going back, there is a chance I'd never return, and love it or hate it, Catholicism is a very powerful force in my life, and one that I'd rather have in my life.  So, even with dread filling my boots (very unfounded, might I add), I am happier about going back, the fact that it's Pentecost, or the medial branch nerve block that I'm scheduled for this Tuesday than the fact that I am now in my 20's (I've decided since I feel so old, that I'm entitled to just describing my birthday by the decades instead of the actual age).

I have no good reason as to why I'm so resistant... or perhaps don't even really care.  No traumatic birthdays, and although I have to share this week with 3 other people (my aunt's is tomorrow, a close family friend is on Tuesday, and my mom's is Wednesday), it was never really ignored.  Perhaps not as much attention was put on it as it is for most people (my last party was when I was 7, but my parents and I got to eat at a really fancy restaurant, and I'm introverted enough that it was the preferable option), but I have a certain... unease about it.

Perhaps maybe I have reached a much more concrete knowledge of my death than most of my age peers, or I have always suspected that I might not live a long life (that doesn't bother me so much as the fact that my body prevents me from living what life I might be given), but I guess I have already reached the "maudlin' ol' drunk crying on her birthday" stage.  But, I'm not even crying at all.  I think that perhaps I really don't care, because I have no strong emotions either way about it.  And like I've heard before, the opposite of love isn't hate, it's apathy and indifference.  I don't hate the fact that it's my birthday, I just don't care.

I haven't really told too many people this, I suppose because just maybe, the fact that it's my birthday might be important to someone else.  I know people who take a great sense of pride from the fact that they know everyones' birthday.  And since I don't care, it won't hurt me at all to just smile and say, "Thank You" in response.

I'm getting off on another tangent, but I will just sign off for now with a mental note to post a blog about my difficulties taking complements.  For now, listen to the words of the great philosophers, John and Paul.

You say it's your birthday
It's my birthday too--yeah
They say it's your birthday
We're gonna have a good time
I'm glad it's your birthday
Happy birthday to you.

A reordering of purpose...

I have been in the midst of a horrific and violent internal war these past couple of months.  I don't think that I'm exaggerating to say that it has been a battle of good v. evil.  But, today, and just for today, I have reoriented (back towards the East, ad orientem) myself back towards what is right, good, and proper.  After much procrastination and fear (alot of fear... I nearly puked on the way to confession several times), I finally am officially back in a state of grace.  And, I don't really feel a thing.

I suspect (and it's been suggest to me by a few people) that I'm in a spiritual Dark Night (not to be confused with the last movie of Heath Ledger Dark Knight), basically where I'm flying blind in this whole realm of faith, and I don't have "feelings" or consolations.  Where I have to stand strong on the, hopefully, firm foundation where I have placed my faith.  Just because the evidence isn't there (or readily apparent) now doesn't mean that it never was true.  It just means that my own perceptions have changed.  And so I hope, and I pray (or try to, anyways).  

The horrible darkness that I have been living with these past two months has somewhat dissipated.  I guess now it's a huge blanket of fog, and it takes awhile for the Son to burn all of it off.  I must be patient and I must keep faith that it will be gone soon enough.  

I guess that I'm not terribly talkative tonight.  I'm in somewhat of a monastic and contemplative mood right now, and it's nice.  It's a somewhat calm and peaceful place, and I hope I stay here for a long time.

But I don't feel like it!!

Oy vey, I seem to have become a 5 year old.  I think in the 7 weeks (although, I would have gone to Mass today, except yesterday I got really hot and dehydrated, and my feet became as swollen and purple as an aubergine... I've had to rest most of the day since I can't really do much else) since I've last attended a Mass, I have reverted back to one.  And I feel that Piaget and Erikson would agree with me.  Around that time period, most kids are very ego-centric and have a very difficult time of having empathy, of seeing things from other people's perspective.  While the kids don't have a problem per say with the bad sort of pride (although it can start taking root at this time), I don't have the excuse of not knowing better.  They don't say that I is the root of pride for no reason.

Granted, it is very difficult to even think of anything else but pain, especially after both my knee and hip both have subluxed at the same time, and I have only made it half-way to the door (50 feet away), or the pain that emanates from my neck (more about that in a later post).  Fortunately, prayer doesn't always involve words, and in fact, I recall some of my most powerful moments in prayer were those times that everything was silent, including my internal monologue (and I can't tell you how hard that is to shut up!).  Hosea 2:6 states that time best: So I will allure her; I will lead her into the desert and speak to her heart.  How sad it's been that I haven't had a conversation with God in all of this time.

When, and where, did I lose that?  Did I even just lose it, or did mock it, scorn it, and then throw it away?  How can I get it back?  

I am still not "feeling" anything as far as religion goes.  I don't even feel repentant.  I want to be, though, and I have been assured that it's enough for now, especially combined with confession.  You know, I realize just how completely self-destructive I've been these past few weeks.  Not externally.  The worst of my old self-destructive behaviors have barely even registered (hardly more than some temptations).  Perhaps because what I have been doing is even more so.  If I am made in both the image and likeness of God, then I am most myself when I am reflecting God in my life and am close to Him.  When I am separated from Him (or rather, when I choose to walk away), I am lost, adrift, unsure of anything, especially of who I am.  It is a very miserable, dark, uncertain, and frightening place.  I am not just a person of (right now, very little) faith, I am a person of facts.  I love laws of nature, of science.  All of these different facets of truth, which is black and white and never changes (although, how it is interpreted does change.  Louie Pasteur was mocked and derided when he first theorized about bacteria and other organisms that harms humans but are too small to be seen.  Now, most milk sold in the USA goes through a process that was named after him, pasteurization, before it is packaged).  I have almost a pathological need for things to be precisely black and white and certain.  I'm very off-kilter when I am not certain, and it nearly pulls me into a panic.  I think there is a 98.5768% chance that I why I like Spock so much from Star Trek.

I think some of that is, also, rooted in pride.  It's about control, about "If I know everything, and can prepare for everything and anything, then all will be OK".  Again, another delusion.  First, all I can control is myself, and not very well at all.  'Tis a fool thing to attempt to control anything else (especially when one tries several times and but doesn't learn her lesson... sounds a bit like insanity to me, doesn't it?), besides, how in the heck do I expect to be able to control anything else, when my own autonomic system can't properly control my hr and bp?  And yet, I still make lame and pathetic attempts, learn my lesson for a few months, then the pride and control itch starts controlling me, I get smacked down, hard, from my own mistakes (I have this tendency to mess things up royally, so God doesn't even need to directly offer correction... my own mistakes are penance enough), and then learn my lesson again, and repeat.  I have yet to take this much time off from attending Mass since I have converted, so I do believe the fact that I'm not even 6 months out from the POTS diagnosis and first suspicions of EDS is most likely a fairly big reason (but unfortunately, not a good excuse at all) why everything has been shaken so badly lately.

I am taking the next step, though.  This week sometime (most likely Tuesday), I will make a confession and try to accept the mercy and graces I have denied myself for so long.  Despair will make people do all sorts of crazy and illogical things.  For me, it helped to exacerbate the spiritual sickness I have been experiencing as of late.  I suppose it's something like not wanting to go to the doctor because, even though I really need an antibiotic, I think that it's not going to work on me anyway, never mind that I took the same drug 3 months ago for the same illness and it knocked it out in 4 days.  I know God's mercy, or I know of it.  I can't even begin to contemplate its depths and just how big and great it is, but I know it exists.  Same thing with His love.  And when I rebelled for the first time in these past 7 weeks, I have simply closed my eyes and stopped my ears and ignored it as best as I could.  It seems I used to be much better with the repression than I am now.  I'm somewhat glad about that.  Repression is also very difficult when I can't revert to emotional numbness.

Sigh... So, I guess to sum up, I have to grow up, be responsible, do things that are good for me even when (or especially when) I don't feel like it, and learn again how to love and trust in God's mercy.  Sure thing, boss, I'll get right on that!  Just don't expect it to be done in a very long time.  I'm working on it, though.

medicine mayhem

One of my most prominent early POTS symptoms was severe mood swings with these "panic attacks"... All of the same symptoms of a panic attack, except I was as calm as I could be.  I've only had one true panic attack in my life, and I was trapped in an elevator (damned claustrophobia!).  I suspect that I have always had some level of POTS.  I recall nearly fainting in elementary school gym class and being yelled at for sitting down in the middle of the class.  Also, I've never been able to run that far (100 feet at most before something would hurt or I would nearly faint), and so I hated the races that we had to do in gym.  I never won one, and since I knew it would make me feel ill, I just walked to the finish line, much to the chagrin of my teacher (take that, now, Mr. M!  I'm not faking it to get out of class, and I have proof!).  In any case, I also remember never really having good control over my emotions.  I actually recall vividly one time slashing some stuffed animals I had with a knife (I was about 7) because I got really, really angry.  Unfortunately, I eventually ended up turning the knife onto myself for several years (more about that later, and to keep you from getting concerned, it has been over 2 years since I have done anything like that).  

I also have never had a regular sleep cycle.  There are some nights that I've hit the sack before 18.00, and other nights, like tonight, it's already 0.35, and I'm not the least bit tired.  I suspect that tomorrow will be a long day.  In any case, at age 12, I ended up at a therapist's office for the first time.  I still have a few scars from what was fresh cuts at the time.  I don't recall the first time that I cut, nor do I really remember why, but I quickly discovered that this was a (very poor) outlet for the mood swings.  A couple years later, I was put on my first anti-depressant, Paxil.  I don't quite recall in what order I was later put on Prozac, Zoloft, Wellbutrin, Effexor, Cymbalta, Celexa, Lithium, Lamictal, Abilify, Invega, Risperdal, Depakote and too many others for me to remember.  I was switched back and forth between meds for 7 years.

I was subject to many, many horrible side effects from those meds, too.  Depakote kept me asleep for at least 15 hours a day.  I don't remember much from my spring semester of Senior year in high school, since I only woke up long enough to move to another room or go home, and then fall asleep as soon as I sat down.  Lamictal made me itchy, Lithium made me twitchy (I also got REALLY toxic on that... I couldn't keep enough fluids in me... hmmm sounds familiar :D), Zoloft made me an emotional zombie (and it also made me self-injure more frequently, as I was distressed at not being able to feel anything, I was ensuring that I was still alive, as it was difficult to tell at times since I dissociated alot on that), Wellbutrin kept me from keeping any food down at all, so I lost about 20 pounds in the month I was on that, and Celexa caused me to gain almost 30 pounds.  But the one that tops it off is the side effect I got from Invega (which is a chemical cousin to Risperdal).  I LACTATED... yes, I was a milk producing machine!  I shouldn't have done that on Invega, especially since I didn't when I was on Risperdal, which has a much higher risk causing lactation than Invega, even though they are chemically similar.  I also recall one causing me to faint every time I stood up.  Before I was on that med, though, I had done that a few times, and at the very least, I would get presyncope every time I stood up.

About 2 years ago, I decided that I would rather die than take any more psychotropic drugs.  I also had this feeling in my gut, that never went away no matter how hard I tried to believe that was I truly bipolar (I was never able to completely convince myself, and so I kept looking for answers, even as I was taking those drugs).  So, even though I was on 6 different meds at the time (one anti-anxiety, 2 anti-depressants, and 3 mood stabilizers), I went off of them cold turkey (yes, before you lecture, I know, I know, not a smart thing to do!).  After a month of hell (and yet some more time I don't remember), I finally started seeing the first few specks of blue sky showing through the fog of my existence for nearly 7 years.  I was finally free!  I don't think that it's a coincidence that I also haven't cut in about the same amount of time (I did once during "hell month", but none since then).  I also don't think that it's a coincidence that I haven't had one "manic episode" or a "depressive episode" since then, either.  It's been a great deal of time.  If I was as badly bipolar as everyone thought that I was, I would have decompensated a hundred times over by now.  Yes, I have my screaming fits, and I have my moments when I'm not coping so well, but I don't have depression as an illness... I have it as a reaction to other physical problems going on.

When I first read that mood swings were a symptom of POTS and other dysautonomias, I nearly cried in relief.  Finally, I have something in black and white to point to for my "instability".  Yes, what I can control is my responsibility (such as self-destructive behaviors... I've only written about cutting in this blog, but I've also had problems with eating disorders and drug use in the past), and that starts by taking care of myself, of not acting on such urges that will lead me back there again.  While the mood swings were caused by the POTS (and some trauma... very long story), I chose to start cutting, to start starving, and to start using.  Et ne nos inducas in tentationem.  And, I must ensure that I don't go back to such behaviors again.

So far, I guess the score is Medical Field: -2 ("crazy" and gallbladder misdiagnoses), Ericka: 3.

One last note, I'm not knocking psychotropics themselves.  I'm merely am stating that I shouldn't take them.  I know several people who are unable to function off of them, but they can cause much havoc for those who don't actually have the disorders the meds are supposed to treat.  For the former people, I'm glad that they are able to find relief from their own private hells, and for the latter, I hope they take the initiative to learn more and more and more, and to not stop until they have answers.

Of anger, pain, and grief...

Yes, it's been awhile since I've posted last.  I almost haven't even had enough energy to go to school, much less keep updated here, but now that I'm done with school (for the most part for awhile... I'm taking a summer class starting June 1), I have a chance to catch up.  I am somewhat ashamed to admit that I have been such a faithless bugger lately.  It has been over 6 weeks since I have attended a Mass, and I am struggling with even feeling repentant about that and other things.

The anger, that has been brewing since even before my diagnosis (but after I knew that something was wrong), has seemed to hit a high (or a low) point, and I have been acting out.  Like I've already said, it's been over 6 weeks since I've been to Mass, and about as long since I've really tried to pray or read spiritual works.  It has been a most distressing time to have all of my hope, both natural and supernatural, completely sucked out of me.  And although I know that if I waited until I felt like going back to that routine, I would never step foot in a church again.  And yet, I feel like the little kid who overhears his or her parents being sappy with each other (noooo!!!! la la la la la, I can't hear you, I can't hear you!!!) every single time I even think about it.  And I would be content (or somewhat not miserable, I suppose) if I never went back, but I know that I would miss playing organ too much.  I guess my friend E was right, music, especially playing organ, would get me back in church.

*sigh* Speaking of organ, and reading spiritual works, I was just discussing with a very wonderful friend (E, you have two mentions in this post!) tonight at how it seems with the POTS and the EDS (and everything I seems to get diagnosed with every time I go to the doctor... When it rains it pours!!!  I used to pray for a diagnosis; now I'm praying that I won't get any more) that day by day, another piece of me dies.  There was one time that I could play for at least 3 hours straight (with just a few stretch breaks in between) without even blinking an eye.  Now, it's a damned miracle if I can make it for more than an hour before my arms are screaming, and my head is pounding, and I am shaking from just the exertion from staying balanced and upright on the organ bench.  And reading... I would give anything to be able to read for more than 15 minutes at a time without something starting to hurt, or my vision failing to the point of being unable to make out the words on the page.  On several occasions, especially when I was in high school, I read at least 4 hours straight, or more.  No matter what book I was immersed in at the time, it was always a joyful and contented time.

So many of the things that I used to enjoy doing I can no longer do.  I know getting to the point of fiat voluntas tua, or "Thy will be done" will bring peace to my situation, but damnit, it seems the closer I am to doing His will, the more I get bent and broken.  It's not like I'm not bent enough already!  If you don't believe me, I have this one (or several) thing I can do with my arm.... :D

So, I've already established that I have a horrible amount of anger about everything.  I guess now the trick is what to do with it.  I guess that I've made the first few steps.  I actually spoke with a good priest about at least some of what has been going on.  Said priest also remarked that I seem much happier when I'm faithfully attending church (really, Father?  You think! :S:D) and that the longer I waited to come back, the harder it would be.  And although I do bluster every once in awhile, especially when it comes towards my feelings of God and church, I know that I am never more myself than when I am in close communion with God, who made me in His image and likeness.  

Maybe that's the answer to my anger about pieces of me dying with each day that I'm sick... that perhaps the things that are going are actually the slag, and I am in a crucible right now, going through purification.  That the end product will actually be a purer and more valuable version of me.  God, I hope that's more than just wishful thinking!