Christ is Born!

Glorify Him!  May everyone have a very blessed and a very merry Christmas.

Missing life

One of the effects of living in a body that is breaking down well before its time is that I am very, very aware of my own mortality and the fact that my life is extremely finite. I know that my days are numbered, and that even if I were to live an average life span, compared to the whole of history, it is but a drop in the bucket.

While I do mourn that which I will not be able to do, and all that I will miss, I know that my life is not my own. My life belongs to God, and my life is a gift from God. I know that my illnesses are a gift, a beautiful, wonderful and special gift that has been lovingly placed upon me by such a loving God. That my days in bed are NOT wasted time (unless I chose to waste them), and that the sufferings I go through is the means to my own salvation. I am sure, very very sure, that without these thorns in my flesh that I would have NO hope of salvation, that my own will and soul, being unencumbered by such worries, would be even more prone to rebelling against God, and would be more prone to trusting only myself. It is through these thorns that God is working wonderful things in my life, and that He is showing that His grace IS sufficient for me.

Silence

While it is tempting to just leave a "blank" post (and with the topic, it would be appropriate), I suppose I should, as ironic as it might be, speak a few words about silence.

I'm not just talking about turning off the TV, radio, computer, alarms, cell phones, etc... everything that can prove to be such a terrible distraction.  Because, while that would be quiet, and quiet is needed for silence; however, quiet does not always beget silence.  Silence, especially interior silence, is the fertile ground where one goes to meet two people; themselves and God.  It has to be fostered, culled, and repeatedly renewed, day after day.  In repeated exposure to silence, one meets themselves, sometimes for the first time ever.  I know my own journey with it has provided me with many insights about my own weaknesses; the root causes, and the manifestations of them.  It is here, too, that I learn how to overcome such weaknesses, or when that is not possible, how to live with them, how to be a whole person even with such a broken and sinful nature.

My encouragement to others is to find this silence wherever possible, and to embrace it, through the fears, the pains, the discomfort.... because it is through these sufferings do the fruits of joy, peace, and love can grow.  It is through facing one's own demons, to lighten the loads of carrying such burdens can one share freely those fruits with others, and can one more freely life a Christ-like life.

My thorn in the flesh is a gift

I am a Monk fan (that is Adrian Monk, the TV show... although I like the monks with cowls and scapulars, too, of course). So much that I was disturbed that it was ended at the 8th season instead of the 10th season (since 10 is Monk's favorite number... I should get a life!). In any case, one of the most frequently said phrases in the show was used to describe his OCD was "It is a gift, and a curse." It was a gift in that it allowed him to see even the smallest details that lead to the cracking of the case, but it cursed him because of the limiting of his function and the pain that it caused him (maybe not physical, but psychological pain can be just as debilitating).

I know that for most people in society, all suffering is bad and is to be avoided. And well, yes, suffering is painful, unpleasant, and I know that for me, a lot that I have experienced has been as a direct result of my own stupid actions and/or inactions. But not all suffering is bad, including innocent suffering. I can remember how much horror I felt the first time I heard that statement from my priest. He went on to explain that salvation came to the world through suffering (and well, crucifixion was no cakewalk, again, as Fr. has said). He humbled Himself, was born of a human mother, and lived for 33 years on this earth, in human form (I will get further into the hypostatic union, of His full humanity and divinity at the same time later). He lowered Himself to enact the healing of the effects of Adam's and Eve's sin on humanity, and to restore humanity to its original dignity that was lost by our first parents.

Because of His salvific act, He has invited us to be members of His body; some toes, some hands, some hearts, etc, with Him at the head. And because He has called us to pick up our crosses daily and follow and imitate him, that does involve suffering. His own suffering did cover the cost of our sins, but in His own generosity, like He allows humanity to take part in creation (through being able to reproduce), He grants humanity the ability to share in His salvific work, to suffer for the body of Christ, His church. From St. Paul's letter to the Corinthians: "Now I rejoice in what was suffered for you, and I fill up in my flesh what is still lacking in regard to Christ's afflictions, for the sake of his body, which is the church." The few passages before this verse, St. Paul has described how he as been beaten, chained, shipwrecked, half-starved, and endured many other sufferings, many things that I am thankful I do not go through. And yet, even after that, through the grace of God, he was able to pen such a beautiful verse.

And so, I know that I am not worthy of this gift from God, and yet, He is shaping me to be worthy of it, day by day, because of His goodness. And I know that it is through His grace that I am also able to join with St. Paul, and say I am thankful I am able to suffer for the Kingdom.

Spam, and inner silence

So, I suppose I have moved up in the blog world. Since September, I have received no fewer than 20 spam comments (all deleted before they could be made public). That my blog receives enough hits (and I believe it is listed at Blogger.com) to have so many comments should be a good thing, but it really only annoys me. Not so much just because it is spam, but I feel that spam is a really good representative of how difficult it is to find a place where there is silence. It is not just the spam itself that is the problem... rather is is merely a symptom of the problem. As CS Lewis, through the character of Screwtape said, "We will make the whole universe a noise in the end" and by making the whole world noise at the end, one is unable to listen for the voice of God.

Busy-ness does not equal action. Neither does being completely still, and listen for God speak in ones heart equal inaction. The person who has to just "stay busy" is no more active than the nun who practices contemplative prayer and Lectio Divina and who spends her days in the convent. And while fears and worries do still enter the convent (and actually, I have been warned that should I join a convent, I will be tempted more in there than I am here... which makes sense, in that the closer I am go God, the more Satan wants me back), in having space where one can encounter God, and hand any temptation and fear over to Him, I will be at least better equipped to deal with such things..

In any case, I cannot go out into public without seeing, and hearing, people caught up in the cares of the world (and I am guilty of this one, too), worrying about tomorrow, about health issues, about family members who are estranged, about work, about... well, worry, worry, worry.

And to that, I have to say, "Who by worrying can add a moment to their life?" And actually, it has been shown that chronic stress can shorten life-spans, so not only does worry do nothing about lengthening one's life, it can cut it short. These fears are expressed with the back drop of running cars, radios, TV, and other noisemakers. And I don't know about others, but as for me, I have a very low tolerance to noise and distractions. And that is when my own worries and fears and fallen humanity really takes hold. And why shouldn't it? Noise blocks out the voice of God, in whom I find my rest.

I do understand the resistance to silence, though, and for so long, I was not very thrilled with the idea myself. I have been told that in silence, there are only two people to keep you company; yourself and God. And as much as it is somewhat frightening to face God in such an intimate manner, it is even more frightening and depressing and uncomfortable in facing my own faults and fallen humanity. But it is in facing those aspects of myself, and in revealing them to God (not that He doesn't already know how numerous my faults are), He allows many graces to be granted to overcome such failings.

Better lonely with you than without

One of the things that bothers me the most about chronic pain and illness is not the fact that it hurts so much (although I would not classify it as pleasant, either), but the loneliness that often comes when I am dealing with others who are healthy. And most people I come in contact with are not anywhere nearly as sick as I am (and I'm actually very grateful for that, as I would not wish this on my worst enemy!) and don't even have the same frame of reference when it comes to dealing with pain (most people have to be put under to have a dislocation reduced... I self-reduce with no medication multiple times a day). Describing what I'm going through to others, no matter how sympathetic and willing to learn they are, is a bit like trying to teach others a foreign language we don't know, and we ourselves speak different languages.

I had a chance to educate my class yesterday (yes, my evil professor had class the day before Thanksgiving) a bit about what I'm going through. As this is a biological basis of psychology class, we are going over biologically based behaviors, and yesterday was the chapter on movement and balance (and there was great deal of the class dedicated to proprioception), and while I tried my best to describe what it is like to constantly feel like I'm weightless and moving even when I'm perfectly still, and how I bump into door jams and car doors and other people because I can't really tell where they are, and they tried their best to understand and asked very good questions of me yesterday, it was a bit frustrating I feel for both of us. And yet, I am thankful for that frustration in part, because since they don't have that frame of reference, then they don't go through this.

And that helped to add to the loneliness that I have been experiencing a great deal lately. Because no matter how hard I try to explain, and no matter how hard others try to understand, unless they go through daily chronic pain and debilitation, it seems to be an impossible chasm to cross. And even in dealing with others who suffer like I do, since most of the people I know are "cloud based", there still is a gulf to cross.

And then I reflect on the agony in the garden of Gesthemani that Christ suffered. He brings his three closest friends, Sts Peter, James and John (although they were not quite saints then), and tells them, "My soul is sorrowful even unto death: stay you here, and watch with me." And He goes off to pray, a prayer I often use: "Abba, Father, all things are possible to thee: remove this chalice from me; but not what I will, but what thou wilt." Fiat voluntas tuas. Lord, please heal me, make me well, don't let me suffer anymore! You are the Great Physician, you have the power! But, if it is not Your will, then help me to love You all the more, and to bend my will to Yours.

And there appeared to him an angel from heaven, strengthening him. And being in an agony, he prayed the longer. And his sweat became as drops of blood, trickling down upon the ground. Lord, I offer all of my sorrows, my pains, my useless body, my stained soul... I offer it all up to you, in consolation of all of the agony and passion you suffered on my behalf. Let my sufferings be pleasing to you, and send your angels to strengthen me so I may better show Your face to the world, whether I am sick or well.

And then Christ goes back, and He finds his three closest friends asleep! Asleep, even though they were asked to stay with Him and watch. "Couldst thou not watch one hour? Watch ye, and pray that you enter not into temptation. The spirit indeed is willing, but the flesh is weak." And Lord, indeed, how weak is my flesh. So weak indeed, I am ashamed to show you my wounds for healing, but it is only through you that I can find healing, in both body and in soul. It is Your strength that will make perfect my weaknesses.

He goes back, prays again, comes back, finds His friends asleep again. Another hour of prayer, and then, Behold the hour is at hand, and the Son of man shall be betrayed into the hands of sinners. Rise, let us go: behold he is at hand that will betray me.

And so, with that, He rose, and willingly gave Himself up to be crucified for my sake, and for the sake of the whole world. He humbled Himself, wore human flesh, and suffered greatly, to repair the damage that Adam and Eve caused so, so long ago. May I show a tenth of that love to others!

Thanksgiving

And how could I even thinking about being thankful with everything hurting so badly, and I really don't know up from down, or left from right (thanks busted up propriocence!  See, starting already), and get motion sickness just being perfectly still.  And I suppose I could be justified in not being thankful, but it would intellectually dishonest and untruthful to say I had nothing to be thankful for.

I am thankful for my family.  Yes, they drive me to the point of insanity and back from time to time, but isn't that what family is for?  I am thankful that they are trying to understand my new reality (and don't blame them for not understanding something they don't go through on a day to day basis).

I am thankful that I have a great opportunity to deepen my faith in the midst of all of this tribulation.  I pray that I am able to follow God's will, no matter where it leads.  I know that my own will does not always want the best for me, or cannot see the best for me, since I am but a finite being, and cannot consider other possibilities, it does not always seem that His way is best, but I am thankful that I, at least sometimes, have the faith to let Him lead the way.

I am thankful for those that I am in contact with regularly church, who do everything they can to not single me out, but do everything to not put undue stress on me, whether physically or emotionally.  They constantly show the face of Christ to me, and they treat me as if I bear the face of Christ.  I have never heard "but you don't look sick" from anyone at church, and I have the sneaking suspicion they understand that sometimes the worst suffering is not seen by others, as that is how I am treated there.

I am thankful that I am able to still go to school.  I feel terrible most of the time, and I am unsure how I am physically able to make it, and still make the grades I do, but I know that I am blessed that I am even able to go in the first place.  

I am thankful for music, and especially for those that I get to meet in my pursuit of proficiency at the church organ.  My organ teacher does treat me a bit more of a hero than I know that I am (she was telling a fellow student that I deal with more pain on a day to day basis than most people do in their lifetime and I still am on time to all lessons... but my only other choice is to just never get out of bed), but she is great in working with my own individual weaknesses and strengths.  My choir director and voice teacher are both wonderful to work with, as well.

I am thankful for priests who sympathize with how awful I feel most days, but who also will not let me stay in my pity party, and remind me that whether I am sick or not, I am still alive, so I have much more living to do.

While these are in no particular order of "thankfulness", I did save the best for last.  To my best friend E, he have been such a wonderful blessing to me.  He doesn't try to do everything for me, but he's such a big help when I am in need.  I can tell him the worst of my thoughts and faults, and he doesn't blink an eye.  He, more often than not, will actually laugh, because he probably was just thinking the same thing.  I am so, so, SO thankful that he is in my life, and I know that God gave us as gifts to each other.

2010 Top Blog award

I have been awarded a 2010 Top Blog award from registerednurse.org.  This award is given to blogs that "touch on some of the life altering conditions that you may come in contact with as an RN."

I am unsure if I deserve this award, but if this award will give my blog more exposure to medical professionals so they can learn more about dysautonomia, then I am very happy.  

Trying to be better...

Well, at least about blogging.  I'm not promising daily updates, but I will try to shoot for once a week at the very minimum.  In any case, I think that I may have met my new PCP yesterday.  I have been looking for one for awhile, and I decided to finally see the one that my friend who has had similar experience with the medical establishment as I have rave about for a few months.  

Although he does not give out pain pills on the first visit, I asked for them (I asked for 8 of the lowest dosage narcotic he could prescribe) since I have been about an 8 or 9 on the pain scale for about a week.  I actually should have tried to see him sooner, but as I'm stubborn, I thought the pain would go away.  However, it is been yet another pain/exhaustion cycle.  The pain causes insomnia.  The insomnia causes exhaustion which makes my muscles weaker so my joints pop out of place even more.  I got to a point to where it was completely unbearable that I've randomly burst into tears the past few days (and I don't normally cry). 

Also, since I've been wearing an Aspen collar and my trapezious are somewhat trying to relax for the first time in a VERY long time (like, around a year or so), well, sore just does not cover how much they hurt.  I know it's a good hurt, since it is the same hurt that most people have when they have a tense muscle relax, but since these muscles have been tense for SO long, the ache and the sore mixed with having more feeling in my hands and arms, which have been dislocating quite a bit lately is a rather special form of excruciating and I honestly have no idea how I have been able to make it to class (one of which is a 3 hour round trip, and I threw up 3 times in one hour during that class... fun drive home).  In fact, I dislocated, and reduced my wrist and I think that I might have slipped a cuss word (it really hurt, and I don't remember the next 15 seconds) right there in front of him.  In any case, I left there with 10 pills, a prescription for Nexium, and an appointment for 2 weeks so he can read up a bit more about me before we meet again.

I really liked (and am now concerned) his concern when I mentioned I haven't had an edoscopy done since February and I had Barrett's Esophagus.  He said that I needed one every 6 months, and I had been told by the GI who had diagnosed me that I needed one every year.  That is when he gave me the Nexium script, actually.  As I was in so much pain, I am not 100% sure of my impression of him, but just by his actions alone, I think that I need to hang on to this doctor.

I hope that this will be the beginning of a good doctor/patient relationship.  He did seem to listen to me, and he didn't cut me off, if I recall correctly.  That is always a good sign.

Being emptied

I am such a bad blogger.  Well, maybe as far as updating goes (although I could certainly improve upon other areas).  However, like I've read on other health blogs, when it is a blog about health (or the health of the blogger is horribly affected) sometimes the absence of posts is a true testament of the subject.  

In any case, I saw Dr. Francomano last Tuesday (the 9th).  And wouldn't you know it, but I managed to confuse yet ANOTHER specialist.  Because of my "interesting constellations of symptoms", she is unsure if I have Classical Ehlers-Danlos Syndrome or Stickler Syndrome, another disorder that causes defective collagen; a different type is affected, but the symptoms are pretty much the same, with the addition of a higher chance of retinal and vitreous degeneration, although the skin and joints are similarly affected.  I have enough of the CEDS symptoms that I could be diagnosed with that, but I have a few symptoms that are only found in SS, including some mid-face hypoplasia which no one has ever picked up on, but as Dr. F is very thorough and careful with her examinations, I am not surprised she is the first one to pick that up.  In any case, she is SURE I have a collagen deficiency, just not sure which one right now.

She also puts you through alot of homework after the appointment (and I'm not complaining in one bit, as this is the first that anything has been done as far as treatment for this.  One of the tests that can narrow down either CEDS or SS is an ophthalmology exam of the retina and vitreous, which was one of the follow up tests she ordered.  I will be fitted next week for silver ring splints, and I've already been fitted for some of the plastic Oval 8's.  I also now have an Aspen collar, and well, it's somewhat disturbing just how much it helps some of my ANS and balance issues.  Not completely, but I suspect that cervical traction will show, probably shockingly so, how much my cervical spine has settled.    On Dec 6, I get to make another trip back to Maryland, this time to see Dr. Henderson, the neurosurgeon.  As he was recommended by Dr. F, I will try to quash some of my almost Pavolovian reaction to any medical professional before I meet them, as after meeting Dr. F, she is much better than I ever dreamed or hoped!

I won't lie, I have been a bit worried.  I know that the craniocervical settling is NOT good, and Dr. F also mentioned Occult Tethered Cord and Chiari Malformation.  I have had to ban myself from most medical websites (excluding a few message boards I frequent) and I think I overly concerned my poor priest when I asked him to remind me of the Catholic position on end of life issues (well, I am not CERTAIN I'm going to die anytime soon, but well, it's a fact of life, and it's good to be prepared).  I have had to constantly remind myself of St. Matthew chapter 6 "Therefore I tell you, do not worry about your life, what you will eat (or drink), or about your body, what you will wear. Is not life more than food and the body more than clothing?  Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they?  Can any of you by worrying add a single moment to your life-span?"  

In any case, being diagnosed doesn't change the reality that I am sick... I'm very sick.  And I am scared.  But well, I'm no less in charge of my life now than before, and I am no less of someone who is struggling to pick up my daily crosses and follow Him.  I just know more about my cross now.

The love of music... a gift and a curse

Before everything went to hell, it was not uncommon for me to practice piano and voice 3 or more hours a day.  Sometimes, it would be more like 7 or 8, or until it felt like my fingers were literally falling off, which I now know, technically they were (thank you EDS).  I would just get so lost in the feeling, the joy, the experience, and I especially loved the feeling of learning a new piece and then, after much practice, nearly perfecting it.  In fact, I would get a sense of sadness upon realizing that I was now proficient in a piece, to be replaced with the enjoyment of knowing that I have many, many music books, with things that I had either not worked on before, or had not worked on in a very long time.  I wish that I was able to express in words just HOW much music means to me.  I almost feel like English is my second language, and a major scale is my first.  These little squiggles on the paper, to one who is unused to reading it, can seem meaningless, but to me it is at least as beautiful as any work of art by Michaelangelo or painting by Monet.  I eat, sleep, and breathe music.

This summer has nearly killed me, it seems.  There have been, so far, more than 50 days with highs of 90F/32C or more, with indexes reaching 105/42.  The heat, and especially the HUMIDITY, has been just horrible.  It contributes to fatigue, and since I'm so tired, I haven't been tensing my muscles around my joints nearly as much so they're more prone to dislocate, especially when I am so unsteady on my feet, again, because of the exhaustion.  I have barely been able to function enough to ensure I get a shower at least a couple times a week, much less practice.  If I've been able to get more than 30 minutes a day of practice, it's been a bloody miracle.  It's also killed me inside, a little more every single day, piece by piece being hacked off by my cruel masters of EDS and POTS.  

"Today, you cannot stand up to sing.  I won't allow you!"  Of course, being the stubborn lass I am, I will try (although not as often as I once did), but I am reminded very quickly who is in control, and it isn't me.  "Today, you can play organ for 2 hours (used to play over 4 at a time), but you will constantly know I am in charge by how often you'll have to reduce a dislocation."  On Tuesday, I did play organ, and I was so happy that I only had to take care of a joint 15 times.  I WAS EXCITED I ONLY DISLOCATED SOMETHING LESS THAN EVERY 10 MINUTES.  I miss the days, before that !@#$(*% knee surgery in November of 2009, that the state of my wrists and fingers weren't constantly in the back of my mind, and I could completely lose myself in the music.  I hate that it is such an anxiety ridden time for me.  Music used to be my refuge from that anxiety.  Continuing to play it has become one of the biggest sources of it.  

What's strange is just how much I don't care about everything else I've had to give up because of this.  I don't care that I can't work.  Although I worked at Starbucks at one point in time since I couldn't afford my habit [baristas get free drinks during their shifts], I don't care I can't have more than a sip of coffee without my heart feeling like it's trying to be the newest member of Stomp.  I don't even care so much about those "friends" who cannot handle me being sick jumping ship.  I know how overwhelming it can be to see a constant reminder of one's own mortality, and unfortunately the past 70 or so years in "westernized" cultures, death is to be avoided at all costs, including talking about it.  I break that folkway on a somewhat regular basis.  Death does not scare me, because I know there are things much, much worse than that.

I have had a regular wish these past few months that I had never started piano lessons (that's where it all started) so, so long ago, especially with knowing what I know now.  This pain of seeing it being taken away, piece by piece, bit by bit, and knowing that there is not a damned thing that I can do about it... indescribable, just fecking indescribable.  However, I am not so certain that I would have survived some very unpleasant events in my life without it.  And, yes, if I had never started, I would be avoiding this great pain right now.  I would have also missed out so much on everything else that music has given me, including indescribable joys and peace.  And, I hope I can mean that if I had to stop playing forever tomorrow, it still would be worth it.  I just don't know.  I wouldn't quite call myself depressed right now, but I also wouldn't call myself a bundle of joy right now either, would I?  This whole business of grieving is just so difficult, complicated, and confusing.  I hope I make it out intact.

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!

Fiat voluntas tua

Thy will be done... oh, how those words truly frighten me!  I've always had a stubborn streak at least a mile wide.  "I want to do what I want, when I want, and how much I want!!!  And I want to do it all NOW!"  And then, the pain that has been a constant companion in my life at least since I've been 10, began to get much worse.  So I had to slow down, and I couldn't do what I wanted when I wanted, at least not as much.  Then, I had surgery to attempt to fix my knees, and unfortunately, the results haven't been the greatest.  Even worse, the POTS that I suspect that I've had for most of my life got much, much more debilitating after surgery.  And I've had to slow down even more, to where I spend almost a week out of the month pretty much house bound, and some of those days bed bound.  My will is not being done at all.

Thy will be done.  Ok, God, so your will for me right now is what?  For me to slow down?  That's already happened.  I make a snail look like it's on a nitrous oxide booster at times!  Am I supposed to learn something from my disabilities?  I am learning patience, I am learning that the policy of 'quality over quantity' is a great one, and I am learning humility, perhaps at times tinging on humiliation, especially when I nearly puke on a professor and nearly faint on my classmates (or visa versa).  I know that I am to offer these sufferings up, to join them with those that Christ suffered on the cross, to make up for his lack. Colossians 1:24 "Who (Paul) now rejoice in my sufferings for you, and fill up those things that are wanting of the sufferings of Christ, in my flesh, for his body, which is the Church."  I also know that is through these sufferings that I am to reach my full glory, through the power of Christ, if properly used. Romans 8:16-17 "For the Spirit himself giveth testimony to our spirit, that we are sons of God. And if sons, heirs also; heirs indeed of God, and joint heirs with Christ: yet so, if we suffer with him, that we may be also glorified with him."  

I know of many, many Saints, who are now in heaven, who suffered greatly, and who were joyful in spite of, and perhaps even because of, their own sufferings.  They were able to use those and become very close with Christ.  Please God, may I follow that straight and narrow path that has been traveled by so many before me!  St. Therese of Lisieux, pray for us!  St. Bernadette, pray for us!  St. Lawrence, pray for us!  St. Agnes, pray for us! St. Agatha, pray for us!  All saints, pray for us!  Gracious Lord, hear and have mercy!

Faithful questions... or questions of faith?

In so many ways, I wish that I didn't have such a strong will.  Even though intellectually, I am willing to make a sacrifice and an offering of all of my pains and sorrows and everything that comes along with the EDS and the POTS, and offering of my anger and anguish that also has accompanied everything as of late.  And yet, because of my strong will... my stubbornness, I suppose, I am fighting this whole concept like crazy.  

Yes, the Cross was NOT a cakewalk.  And if I am to follow Christ, I am to pick my own cross up every single day and follow him.  And yes, even if I don't follow Christ with my pain and other difficulties, I will still experience them very acutely, and perhaps even worse, since I will be dealing with them alone.  So, why the hesitance to offer this up?  Perhaps there is a great deal of anger going along with this.  I don't really know.

I do know, though, there is a great deal of difference between being faithful and feeling faithful.  As I'm writing this, I am planning my clothes to wear to church today, trying to remember what I'm singing with the choir, and... basically, I'm on my way to church, and I will be there baring anything unforeseen.  And, Lord give me the graces needed, I will be there, week after week, holy day of obligation after holy day of obligation, whether I "feel" like it or not.

But you get used to it, don't you?

Get used to constantly feeling drunk, nauseous, exhausted, dizzy, light-headed, like my heart is going to jump out of my chest, my joints that don't know how to stay in place and constantly hurt, and all of the other lovely things that go along with POTS and joint hypermobility syndrome?  Unequivocally NO!!

This post came about from a conversation I had with my mom last night.  She has been hit with a pretty severe stomach virus (although she's feeling better now), but was complaining about how she feels so weak and swimmy headed.  Of course I empathize with her feeling so lousy, but then I mentioned that I feel like that every single day, and it might get some better occasionally, but it would never go away, she responded, "You get used to it, though, don't you?"  I wanted to scream at her, but I didn't, because at least now she has an idea of what I deal with on a day to day basis and isn't trying to completely minimize and dismiss what I'm dealing with everyday.  She is coming around, but I suspect that it will take a lot longer for her to understand as completely as someone without these illnesses can.

And that's all I really want from her, understanding.  I want her to understand that when I don't get out of bed until noon, it isn't because I'm lazy, that I take my meds because, even though it does cure anything, it does make the symptoms somewhat better to deal with, that I go to the doctor all of the time not because I'm a hypochondriac, but because I'm actually sick.

Ok, rant over.  I'm going back to sleep.

Don't have gastroparesis...

Which actually somewhat surprises me.  I have alot of the symptoms of it, but the results from the radioactive eggs test were normal.  Oh well, I do like Waffle House eggs (I live over 45 minutes from the testing center, and I didn't want to have cold eggs when I got there, especially when there is a Waffle House less than a mile from the center), and I'm glad that I don't have another thing to check off when I see a new doctor, but in some ways, I'm disappointed as there isn't a known medical cause for most of my postprandial nausea and bloating.  I will be keeping a close eye on my GI doc and suggest tests because I have yet another gut feeling (he he... pun intended) there is something wrong other than the Barrett's esophagus with my stomach.  And thus far, I have been 2 for 3 (and the one that I haven't gotten is just a technicality... I think I have EDS, and a geneticist thinks that it's just joint hypermobility syndrome) on these gut feelings, so I've learned that when I am sure something is going on, it pretty much is the case.  I tried to argue for over 5 years that I had gallbladder disease with several doctors telling me that the daily stomach pain and nausea that landed me in the ER with an IV of fluids, morphine, and phenergan a few times was just stress when I knew full well that it was more than "just" stress. 

And with the POTS, the first moment that I saw the description for POTS, I knew for sure that I had it.  With that, thankfully, I didn't have to wait 5 years to be diagnosed.  Luckily the first cardiologist my GP referred me to was knowledgeable enough to be able to diagnose me.  Unfortunately, however, there isn't much to be done to treat the POTS... the best that can be hoped for is to control some of the symptoms, and so far, the symptoms haven't been under the greatest of control.  I have been considering going to Vanderbilt for a clinical study.  They haven't come up with any new medications to treat the POTS, but they basically would try me on a different medicine each day and have me rate to see which one works the best and do testing to see if there is anything underlying that could be causing the POTS.  While the idea of being in the hospital for 2 weeks doesn't really thrill me, I am willing to do anything to become more functional than I am.  

I am ashamed to admit it, but it's been almost 5 days since I've had a shower since I haven't had the energy to do so... and it's pitifully sad about what little energy I've had hasn't accomplished that much.  There are so many days that I have to choose between doing the 1-3 things (usually small things that wouldn't take much energy from most people) that I have planned and taking as shower.  I can't do both usually.  The little things that I used to completely take for granted are the things that cause me the most problems.  It is frustrating at times, and I suppose that I could... and maybe even have the right, to sit around and whine all of the time, but in doing that I stay in such a horrible disposition, so I try to limit the time that I have a pity party.  So, for the rest of this blog, I will try to keep positive.

From my illness, I have learned most of all patience.   It takes me so much longer to do things now that I can't afford to be impatient.  It is a waste of energy and of a good mood, so I have to almost force myself to be patient.  I have learned how to make decisional according to what is important to me.  It is important that I keep living my life to the fullest possible, so I fight through all of the pain and the exhaustion as best as I can.  The results at times can be somewhat disastrous, but isn't that the point of life?  To make chances, to stretch outside of your comfort zone and just live?  I have this (or these) damned illness, it does not have me!!!! I hope that I have more compassion towards everyone, as I don't look like I'm really sick... I do limp quite a bit of the time, and occasionally my cheeks are either bright red when I'm having an adrenaline surge, or pale when I'm close to fainting, or green when I'm close to hurling, but other than that, I don't look sick.  How many other people are suffering silently who also don't look sick?  Humility is yet another lesson that I have learned.  I have to be humble in accepting my limitations, and in asking for help when I need it, and in actually using my handicap placard.  It's hard to be prideful when my body functions are slowly decreasing day by day.  Also, and perhaps most importantly, I am learning the art... the blessing that suffering can bring.  That I can actually have some good to come through the suffering I endure... that I can offer it up in union with Christ's suffering and in doing that I can draw closer to Him.  That my suffering also has redemptive value... wow.  

That thought gives me such a great sense of humility and wonder.  First, that God so humbled Himself to clothe Himself in human flesh for the salvation of the whole human race brings me to my knees (more figuratively, but still.. :D) in adoration.  And then in doing so, in lowering Himself to the human race, He invites us up to holiness and a divine life.  And for me, a share in that divine life is to offer up my whole self... my joys, my sufferings... my whole life, in fact, as an offering and a sacrifice up to God.

Ok, that's enough deep theology for now.  Besides, I am tired and need to try to get to sleep.  If you have made it this far, I thank you and am humbly amazed.

I'm glowing!!!

I just got out of the testing center, and still no results (probably won't hear them until either this evening or tomorrow sometime).  What a boring test!  Not completely uncomfortable, but well, it wasn't a feather duvet I was lying on.  I was also cold the whole time, all though I still did manage to go to sleep a few times (only to be woken up because I was so cold).  I did try to ask the tech if he could make any unofficial pronouncements of my results, but since he still has to graph them, he couldn't.  At least I didn't have to have an IV stick like the guy in the other room getting a HIDA scan (don't worry, the tech didn't say that's what he was getting... I've had it before so I knew what was going on).  

The last time I had to have an IV, I found out that my left arm in the elbow is pretty much shot.  There are good veins, alright, but an inch or so up, there is this nice clump of scar tissue, so the shut can't go in as far as needed.  At least the nurse didn't try to dig through it!  Oh, I would rather be stuck 5 or 6 times than once with digging involved.  I normally have no problems (getting dizzy or sick) with being stuck except for when they have to search for the vein after I've been stuck.  Actually, the last time the nurse did that to me, I had to throw up afterwards... I was able to hold it in until afterwards, all though looking back, I think I should have vomited on her just so she, the initiator of my vomitus, could have partaken with me.  

Radioactive eggs and ham...

I am going for an gastric emptying study tomorrow.  I suspect, and so does my GI, that I have gastroparesis.  Is it strange that I am somewhat excited about eating radioactive scrambled eggs tomorrow?  Or, perhaps I just have to latch on to something that is somewhat fascinating and funny to avoid the fear that can come along with being sick.  Besides, I do hope for a diagnosis, since, well, I do have the symptoms of gastroparesis, and if I know, and it's medically documented, then hopefully there is something I can do to treat the symptoms and better deal with them.

Since I have such an early appointment, I am heading off to bed to (hopefully) sleep.

Acupuncture and right-hand drives and internetum...

...is great!  I have had only two sessions so far, and I can say that already it is helping with the chronic pain.  Yesterday when I woke up, it was the first time in a REALLY long time that I did not have pain.  I should have had another session today, but with my car in the shop, and no ride at this time, I couldn't make it today.  I am hopeful that my car will be fixed by Monday afternoon and I'll have my baby back!  I went to Knoxville yesterday in my parents' Jeep (which is a right-hand drive), and let me tell you, the driving was VERY interesting.  After the first mile or so, I was reacclimated to the different position in the car, but it has been such a long time since I've driven a right-hand drive vehicle, it still would freak me out every so often.  The great news, though, is that I was still able to park!

So, I was in Knoxville to hear a talk given by my priest about the 3rd and 4th Commandments.  Somehow, he got off topic slightly, and started using the cast from "Gilligan's Island" to talk about the 7 Deadly Sins, which is GENIUS!  The Skipper is gluttony (a "hormone problem" as Fr. put it), the Professor is pride (since he's smarter than anyone and everyone put together on the island), Mr. Howell is avarice or greed because he loves his money more than anyone else, Mrs. Howell is anger (although somewhat righteous) since her anger is directed towards her husband, Gilligan is sloth since he is somewhat bumbling and isn't very diligent in his work, Ginger is impurity, and Mary Anne is envy as she wishes that people would love her and admire her as much as they do Ginger.  

The priest who gave the talk last night is also the same one who prays the only Latin Mass in 100 or so mile radius.  He often uses both the Latin translation along with the English, so last night when he mentioned the internet, he also said "Internetum", which cracked up everyone in the room.  I first thought he made it up, but after a google search, I found this website which has a list of Latin neologisms.  Very interesting!

My dentist is a sadist..

I just had my braces tightened yesterday... and today it hurts to even eat mashed potatoes and yogurt.  In addition to my very sore mouth, the POTS symptoms are magnified right now, but I know that isn't too unusual.  I have heard of other POTS patients who have braces that are completely knocked down for a few days after they are adjusted.  I am glad that my next appointment is on a Thursday as I have nothing to do on Fridays.  From now on, I must remember to schedule my appointments with that in mind.  Unfortunately with the POTS, my memory is shaky at best.

Since I'm so tired and in pain, I'm signing off for now.

Soooooo tired!

I didn't go to church this past Sunday (gasp!! I know) as I was too busy vomiting and dry-heaving all day long... ended up going to the ER for help, and I was so sick that they took me in front of a pregnant woman who was also throwing up (I did explain how bad it was for me being dehydrated with POTS, but still, they talked about taking me ahead before I mentioned the POTS).  After an IV of fluids and meds (Zofran and Phenergan) I went back home, but still was very tired... I was very glad that it had snowed later that evening, since school was canceled due to snow.  I wouldn't have gone anyways, but at least I didn't have yet another absence to add to the fun.

Anyways, it takes me so much more time for me to recover from illnesses than those who are autonomically normal.  Another reason why I am having such a hard time recovering is that I have had severe insomnia at least the three days prior due to severe pain.  Almost every time I roll over in bed or get out of a chair something subluxes or dislocates.  And frankly, IT HURTS!!!  

I'm having to end a relationship right now, too... a few days after my ER visit, I went to my GP for some pain relief, as I've barely even been able to think, much less do anything that's really productive.  She promised a consult with a pain clinic (although I am really hesitant to take that route right now... but everything hurts so much all of the time that I am willing to do anything to relieve it... not take it away, because I don't think that's possible without completely drugging me to the point of not being able to function), and I asked for something to take the edge off.  After saying that prescription ibuprofen and naproxen and Ultram doesn't do anything for the pain, she only wrote a script for a mild muscle relaxer... I'm having joint pain, not muscle pain, and the medicine doesn't do ANYTHING for the pain I have.  I still don't have a consult for a pain clinic, because she either wrote the wrong orders, or just won't do it.  This isn't the first time that I've been farked over by this doctor, so I am ready to change GP.  Yes, it's convenient that she's has a walk-in clinic (don't have to make an appointment) but that isn't worth the lack of care I'm receiving from her.

I'm still in alot of pain, but heat packs and stretching have been somewhat helpful, but the somewhat is like putting a bandaid on a gushing arterial wound.  I'm having trouble concentrating and even functioning.  I'm walking like an old lady, and I'm really close to using my cane again.  *Sigh*  So much more I get to offer up, I guess.  Dear Lord, help me carry this cross!!! 

Hypermobilty syndrome and perceptions...

I have recently been diagnosed with a joint hypermobility syndrome (the geneticist refused to diagnose me with EDS, which I suspect that I have... I also suspect that she didn't know what she was doing, as she had to have a print off of EDS in front of her to even talk to me, and she only had the Classical EDS symptoms printed off... but that's another post). I am somewhat glad, because I now have a medical reason why everything is so "loose", and why my ankle will sometimes sublux when I just walk, and why everything, especially my joints, always hurt. I wasn't really given anything to do or take to help with the symptoms, except to avoid movements that hurt (gee... thanks, every movement hurts, even something like playing the piano right now is excrutiating, and I don't want to become practically paralyzed to follow those order! Next doctor, please!). Since I'm not really impressed with this doctor, I am looking to see another one... I hope to not have to travel much out of state, but it looks like I might need to make the 10 or so hour trip to Baltimore to see an EDS specialist.

Ok, enough about the hypermobility. So, the past few days have been a bit of a pity party for me. I have been really angry and just emotionally touchier than normal... So much so that earlier I nearly keyed someone's car at school just because they were parked in a handicap spot without a tag. I didn't key their car (even though I REALLY wanted to). I did tell security about it, and they hopefully took care of it... or at least the nearest towing company did. Anyways, I digress. After the past few days of negative energy and emotion, I think that I have come to a realization. I am in mourning, yes, but what am I mourning? I am mourning a perception. I have always perceived that my life, and my abilities, would be something different, something "better" (for lack of a better word). But instead, I have been dealt the double whammy of hypermobility syndrome and POTS that often leaves all of my reserves extremely exhausted, to the point of needing to sleep all day just to make it being awake for 6-7 hours the next day, and I hurt so much all of the time that I try to sleep just to get away from the pain.

My perception of myself, and my life, was one filled with great adventures and of greatness, at least my definition of greatness. The adventures? Going on a cheese, wine and pilgramage tour of France and Italy, hiking one some of the most beautiful and hardest trails in the area, and in the country. Taking a road trip across the country in an RV.... all of these, at least right now, completely impossible. And the greatness? Becoming one of the most popular classical and broadway singers ever (more so than Sarah Brightman or Mandy Patinkin). Of doing one BIG THING that would save the world (from what, you ask? I never got that far... I just wanted to save the world). Of doing big huge acts of charity. Again, all of these at this point impossible.

And that's where my latest realization (or rediscovering of St. Therese) has come from. First, it's not really my life that has changed... God, who is all knowing and all powerful, has planned out my life from the time of my conception (perhaps earlier). While I don't know the specific plan for all of my suffering at this point, I have faith and trust that there is a point and that offering that up to Him can be perhaps one of the greatest offerings. My life is going exactly how it is meant to go, of how it was planned to go. Yes, I can refuse to follow that plan, but is it really going to make me not be sick? And will I really be happy doing things my own way (from previous experience, I can say ABSOLUTELY NOT!!!)? Sometimes, truth (in this case, realizing the death of my previous perceptions) hurts for awhile, but at least that's a pain that tends to diminish over time. Or so it seems to have somewhat even from the very first raw moments of those perceptions being ripped away. Perhaps it has taken me longer that some others for me to reach this point, but I have reached it now. Just knowing myself, though, this is probably going to be a process that I'll go through again, and again, and again. That's OK, though, because no one is expecting (even me) perfection with this.

To go back to St. Therese, perhaps my mission in life is not to do the great big and very visible deeds... but to do the smallest things with great love--great love for God, great love for my fellow human beings, and even great love for myself from time to time. As I have already been saying, "Do what you can when you can, and if you can't, offer it up!" While I might not be able to stand in front of an abortuary for hours while praying, I can offer up my aches and pains, and other symptoms of both illnesses, to the saving of life and for help and hope for the mother. And I might not be able to sing at all times like Cecilia Bertolli (at least outwardly), but I can cultivate an interior life to where I sing God's praises at all times, without ceasing. And I might not be able to go out and see the greatness of God in nature, but I can see the very image and at times, likeness, of God in every created man (and woman ;D), and I can respond to that image by being loving.

I think that I have discovered that I cannot focus on what I can't do, because yes, it is very depressing and discouraging to realize that I have the quality of life of someone with congestive heart failure. Instead, I need to look beyond that, to keep my eyes on the prize, so to speak, and I know that I can make it through in spite of my body, with the help of Christ. One of my friends is a hang glider pilot, and many times he has told me of the importance of focusing his gaze to where he is wanting to take the glider, and to not become a "glider-tourist"... you know, looking around everywhere, because that is a sure way of having an un-pilotable (if that's even a word) glider that could eventually crash. But when his vision is focused on one spot, there is a greater probability that he will reach his desired destination. Please God, may I not become distracted! May I always keep my eyes on You!

Very big cost....

and yet, not so much... Ok, so I did almost faint while filling in for the poor choir director who was stuck with completely iced over roads. And I was very tachy, shaking all over, had a really bad headache, and was quite nausious.... But I made it to church, we did the Gregorian Chant propers (quite simply divine!!), and I wasn't too horrible on the organ... granted, my hands (well, my whole body) were shaking so much that I was having trouble hitting the right notes, but thanks to St. Gregory and St. Cecilia, it wasn't too horrible. Even though I could not receive the Eucharist today (a fight with my parents this morning about going to church took me out of a state of grace), I was spiritually fed.

You see, during the elevation, where Fr. says "Hoc est einem corpus meum", I was praying... fairly deeply. God, this is my body, broken and tired and sick, and I offer you all of it, of my sufferings, of my joys, of times where I can barely move in bed, and the times where I feel whatever the new normal is... it's all yours! Fiat voluntas tua!

I might not have much to offer, in the way of physical health... or cognatively, especially when I'm dealing with an extra-bad POTSy day, but I have been given enough, and I choose all... I choose to offer all. A thimble and a pitcher, both filled with water, are equally as full. One might not have the capacity to hold as much as the other, but both are at their full capacity. That's me... I used to be a pitcher, able to hold a great amount... about to do a great amount. And yet, I wasn't completely filled. In fact, I was quite empty. But now, I'm the thimble, and even in my smallest of thimble days, I am more likely to be completely filled. In some ways, I'm glad that I now have less to give, because it makes it that much more to give all, to offer it all up to God, in union with Christ's suffering. And knowing that, that I am close to Christ in all of my trials and sufferings makes it that much easier to go through.

Why, oh why???

Why did I think that trying to go sledding was such a brilliant idea? I'm begining to see that I am really a kid trapped in an 80 year old's body... I managed to make three passes through the snow with my sled, kept getting spit out, because my sled is made for 2-3 inches of snow, not the 7 inches that we actually got (here, in East Tennessee!!). After the second run, I started seeing spots, was out of breath, and my pulse got really, really high (I didn't check it, but it felt like it was over 150)... and yet, being the stubborn person I am, I went one more time, which almost did me in. I barely made it back to the house... I kept trying to walk in the tracks I made on the way down, but I couldn't step that wide. If we hadn't gotten the small layer of sleet about 2 this morning that made a crust on top of everything (with even more snow on top of that), I would have just shuffled my feet, but the few times I tried that, I almost ended up face down in the snow. I almost called my dad, who was in the house maybe 50 yards away, to come and get me in his car. Even worse than that, when I got thrown out of the sled, I landed on my right knee, the one that I had surgery on this past November and that still isn't completely healed up... UGH!!!! At least I made it back home in one piece... I'm just hoping that I won't pay a really big price for it later on.

My mother, the mail carrier, wasn't able to do much on her route... she delievered something like 25 boxes, and after getting stuck in the snow a few times, and then actually going off into a ditch, decided it was too hazardous to continue... all of her co-workers agreed. I'm glad that they are home safely. I suppose since, when I was younger, I knew quite a few rural mail carriers, and had access to the 'grapevine', I heard about some mail carriers actually getting severly injured, or worse, killed while on the route. Not to sound prideful, but there was a time that I knew more about the Postal Service, and the rural carrier craft than some of the employees. I don't keep up with it so much anymore, but it's frightening to think that I still know more about the job than those employed.

I still am determined to make the usually 45 minute drive to Church tomorrow... I saw a plow come down the road, and if they have come here, they already have taken care of the main roads. Again, with a prayer and my AWD Forrester, I will be there. I will be leaving an hour earlier than I normally do to allow extra time. Again, though, I might wake up and barely be able to move without my pulse jumping to over 130. I am ardently praying that I won't pay for my little adventure.

Let it snow, let it snow, let it snow!!

I shouldn't be so excited about the posibility of up to a half-foot of snow, but I am. I shouldn't be, because the extreme cold, plus the humidity and changes in barametric pressures that comes along with snow storms (well, any storms) will probably wreak havoc on my body, having POTS, but in so many ways I am like a little kid. I just wish that I was still in elementary, middle or high school so I could get a snow day, but with my college schedule, even if they do call off school tomorrow, it wouldn't matter since I don't go to to school on Friday (or Thursdays, either).

The past few days, I have been having some pretty bad symptoms as this storm has been cooking up (with all of the changes, especially rising, of the barometric pressure), but again, in some ways I am really happy because that means that, unless the temperature raises a few degrees, we're going to be hit pretty hard. My mail carrier mother isn't too happy about the possibility (or probability) of delivering in the snow, but.... "Neither snow, nor rain, nor heat, nor gloom of night stays these courageous couriers from the swift completion of their appointed rounds". She also isn't too happy about the idea of me driving 45 minutes away to Knoxville on Sunday to go to church (she's trying to convince me that it's going to be canceled... Catholics don't call off church due to weather, even if only one person attends... Sunday is a Holy Day of Obligation, which doesn't apply to someone who truely cannot make it to Mass due to illness or other obstacles). But, with the help of St. Christopher, my AWD Subaru Forrester, and the fact that I'm leaving about an hour earlier than I need to (if I get there early, well... I need to pray anyways, and I do better with praying when I'm with the Eucharistic presense of Christ) I'm going.

Of course, I say I'm going to church now, but with the way that just the snow storm coming in is making me feel, I am somewhat concerned how bad off I'll be when it actually gets here. Yet another thing that I don't like about POTS.... Just the uncertainty of how I'll be able to function even the day (or hours) before, therefore I hate planning anything right now, and I hate committing to doing something, because I just don't know if I'll even be able to.

Speaking of planning, I have 2 doctor's appointments in a week, one with a gastrointestinal physician and one with a geneticist. I've been having horrible stomach problems for several years, but they've finally gotten to the point of where I'm having trouble just ignoring them. Besides, I got to where I didn't like GI docs, because they're the ones that accused me of having psychosomatic stomach pain and nausea (which sometimes lead to vomiting) when in actuality I needed to have my gallbladder taken out (which happened 5 years after my first GI appointment). The geneticist is to see whether or not I have Ehlers-danlos syndrome, a so-called hypermobility disoder. Not just my joints are hypermoble, but I suspect that my blood vessels and stomach/intestines are as well, causing all kinds of problems, including the POTS and my stomach issues. I hope to find out if there is maybe another path I need to take in treating my illnesses.

Um... ah... like, you know?

Or so most of my spoken sentences have been today... At organ lesson, I couldn't even remember some of the very first musical terms that I first learned when I was 9... quite humbling, and verging on humilating. One thing this disease is teaching me is humility, and I don't like it... I wish that I had spent time working on humility when I was still fairly healthy, because this is such a painful way to learn it. And a frustrating way of learning it, too... It took me almost a week to write up a little over one page (double spaced) paper... I just couldn't get the words to the paper, and I'm still not happy with it. A few years ago, I could have knocked that off in about 30 minutes (and did several times.. lowest grade I got on a paper like that was a B). What hurts all the more is that I remember how I used to be... I am focusing on what I am now and comparing myself to the person I was in the past. I guess that I'm still grieving over the losses so much that I am blind to the things that I could learn and am gaining from this illness.

I could learn patience, especially the times when it takes me almost 20 minutes to get dressed because I have to rest between putting on each piece of clothing, or when I have to walk extra slowly because if I go any faster I fear passing out. Patience would also be useful when I am practicing a piece of music, especially a vocal piece, as I can't just go for 3 hours straight practice... after about 10 minutes (sometimes just after the first line), I am so lightheaded that I am shaking and I can't see. I have to slow everything down. I suppose that I could at least learn to appreciate the scenery along the way.

I could gain a greater appreciation for the sufferings of my neighbors, both right next door and all around the world. Granted, I am not in the best of health, but... those poor people of Haiti, of Sudan.... of any place that if someone has a cow he is very blessed. Even with all of my disabilities, I do have a roof over my head, food in my pantry, clean water, and friends and family who love me... some are even very supportive of me even if they don't understand what's wrong with me (they just know I'm sick, and that's enough for them).

I could even use my illness to gain a better understanding of Christ's love for me, for the whole world. How much more did He suffer for our sakes, out of love, out of the desire of not stopping until there was a way that He could open the gates of heaven to humanity? And hopefully with that greater understanding, I could gain a closer relationship with God, and perhaps even a deeper reliance on God. I used to be independant to a fault... asking for help was a show of weakness... any sign of weakness was to be stamped out and not shown to others. Now, I can't help but show how weak I truely am... I do try to hide it, at least somewhat, because I know it would scare others for them to know just how ill I really am, but when all of the color drains from my face (or I'll flush bright pink and red) and I start sweating profusely because I'm having a pretty bad POTS crash... well, I can't hide that. I can't hide how slowly I go up a flight of stairs, because I physically can't go so fast, and even if I could, I'm afraid that I'm going to faint, so I hold on for dear life to the railing (not that would matter even if I did faint, as I would let go of it).

Dear God, you know what help I need and what I need to learn... Let me learn it now!!!!

Driving in the rain...

On my way back home from church, I came up with several reasons why I hate driving in the rain, especially when it's pouring down heavily. As I'm having some brain fog (still!) I might not get all of them, but I'll give it a shot.

• I hate having to use the windshield wipers. The back and forth movement kind of hyptnotizes me (not completely... I can still hear a phone ring without barking like a dog).
• The sound of the rain drops falling everywhere overstimulates me, and it's really difficult (more than usual) to concentrate while driving.... It's like putting someone with ADHD in a glitter shop.
• My arms get really tired... in good driving conditions, I trade off arms--when one gets tired, then I'll switch it off for the good one. But with all of the water on the road (and my AWD actually skidding a few times.. how shocking!) I felt that I needed both hands on the wheel. My hands are also really tired, since I was gripping the wheel pretty tight.
• I can't have the heat directly on me, since I have to have the defrost on, or I really can't see because of all of the fog. I'm already cold by the time I've gotten to my car, because chances are, I have been walking through the wet and cold rain.
• The other drivers!!! Both who go either too slow or too fast.... Don't tailgate me, and if you can't go at least the speed limit, then STAY OUT OF THE PASSING LANE!!!!

That's all for now... I know that I came up with several other good reasons why I hate driving in the rain, but like all of the litter that everyone throws on the ground here, my mind is being washed away.

Should I stay or should I go?

I am sitting here, tired as can be. I normally go to church twice on Sundays, but I have already missed the Divine Liturgy at the Byzantine Catholic Church. I think that I pushed myself way too hard yesterday, and I am paying for it dearly today. Another service I attend (and sing in the choir at) is the Extraordinary Form of the Roman Rite (aka, Latin Mass). I live about an hour away, and I need to be there by 12:45, so if I were to go, I would need to leave in about 30 minutes. I know that if I truely cannot attend church that I am released from the obligation to go (if you can't go, you can't go), but I am not happy with the fact that I may not even be able to go... or if I were to push myself hard enough, I might not be able to go to class (at least the morning class) tomorrow. It's such a difficult thing to not be depressed at the lack of my ability to do anything, especially when my symptoms are at their worst (though they haven't been at their worst, they have been worse than usual the past few days). I have been praying like crazy... of course for a cure, but also for "WHY???" What am I supposed to learn from this illness? How do I need to face it? Why do I feel so alone (though I know I'm not alone)?

There are many other prayers I have and need to pray, but right now my mental functioning isn't so great... I am still looking into whether or not to go to Church... I'll get dressed and see how I feel after that.

Questionare about my illness

I read this on another blog, and in a couple places and wanted to fill this out for myself.

1. The illness I live with is: Postural orthostatic tachycardia syndrome (or POTS). My autonomic system (the one that controls heart rate, digestion, breathing... basically everything that is "automatically" run by the body) is out of whack, and I experience many disturbing and annoying symptoms, including a heart rate that raises to at least 130 when I stand up, light-headedness, random headaches and pains, "brain fog" so bad that sometimes I can't remember my name, or what I went into a room for, or forget what I'm saying in the middle of a sentence. I also have problems with digestion, so food stays in my stomach longer than what's normal, GERD, problems on the "other end"... either I'm stopped up or I can't get it to stop. Also, I am exhausted all of the time, though at times, I'm much worse than others. I am also thirsty all of the time, though I also have excessive urination at times, too. Sometimes I get restless legs so bad that I'll actually have myoclonic jerks (uncontrolled movements in my legs... I'll just randomly kick). I have problems with going to sleep, or with either sleeping too long. There are many other symptoms that affect me, but those listed are the ones that annoy and bother me the most.

2. I was diagnosed with it in the year: 2010, just a couple weeks ago, though I have been diagnosed with GERD since I was 12, migraines for the past couple of years, myoclonic "seizures" that were thought to be psychosomatic (from being "crazy", a form of what used to be called hysteria).... I also had my gallbladder taken out in 2006, after a 5 year battle to get doctors to believe me that my stomach pain and nausea wasn't also psychosomatic, also. Because of being called crazy one too many times, I decided that I wasn't going to say anything about my other symptoms, that I've been having off and on for the past several years, and I truely thought that I was just lazy and they were all in my head. It wasn't until I was pretty much completely debilitated and after a few scary moments where I nearly fainted did I actually tell my GP about it. She referred me to a cardiologist who diagnosed me with POTS.


3. But I had symptoms since: I can't remember how long, but at least for almost 10 years now.


4. The biggest adjustment I’ve had to make is: Perhaps one of the biggest ones is getting used to the fact that I'm not crazy or a lazy bum (as some people have tried to tell me), that I'm actually sick. Also, the fact that I'm actually sick and debilitated was a bit difficult, and I had to go through somewhat of a greiving process... one that I'm still working through, though I am blessed with a wondeful spiritual father and a great best friend who have been so wonderful and kind to me.

5. Most people assume: that I am just milking the system and my symptoms to get out of things, like not doing anything too physical or having a handicap placard in my car. If I didn't have the placard, I wouldn't be able to go to places like Walmart, or my school, because the walk across the parking lot would have me so exhauted that I wouldn't be able to function inside. Though no one has said anything to me directly about my handicap placard, I can see and tell by their body image that they don't think that I should have it. I don't blame them, because I look like a healthy and young 23 (actually, more like 16) year old. They also assume that because I'm out and about that I'm doing better... which is true, but that's only because I've been resting and loading up on water and electrolyte tablets for the past few days or that I'm pushing myself too hard right now and will be paying for it the next several days, if not weeks.


6. The hardest part about mornings are: standing up, probably, because that's when my pulse rate jumps the highest, to over 150, and my symptoms are the worst. I also am very slow to wake up... it takes me at least 10-20 minutes (sometimes more) to be as fully functioning mentally as I will be for that day. Also, walking from the bedroom, to the bathroom, to the couch (probably not even 25 feet apart) will exhaust me if I haven't had at least 32 oz of water. I also don't like drinking so much water, especially early in the morning, and that's really difficult for me, because sometimes I'll have trouble swallowing.


7. My favorite medical TV show is: House, probably, though it's difficult to watch others with these rare, but most curable diseases, being diagnosed and cured within an hour, espeically since it's taken me several years to be diagnosed correctly.



8. A gadget I couldn’t live without is: 1. My handicap placard. 2. My computer, as I am able to connect with others who have POTS and other autonomic disregulations and I hope we can offer support to each other... I know at least they have offered much support for me.

9. The hardest part about nights are: the insomnia, and not being able to sleep on my left side, as I will have horrible chest pains almost immediately. I used to sleep only on my left side, but now I can't.


10. Each day I take: a beta-blocker, tons of water and electrolyte tablets and runner's gel (which is basically a very concentrated form of Gatorade)


11. Regarding alternative treatments I: I haven't tried any yet, though I did get the electrolyte tablets in a natural health food store.



12. If I had to choose between an invisible illness or visible I would choose: I choose the one that will help me grow closer to God and to grow more in virtues, especially patience and fortitude... I choose the one that will allow me to offer up my sufferings in union with Christ, that will make me the most dependent on God and more able to say fiat voluntas tua, Thy will be done.


13. Regarding working and career: I wish that I could work... even part time at a dead-end job would be wonderful. I am a full-time (barely) student, and have worked my schedule that I have 2 full days, one day with only one class (and it's an organ lesson), and the rest of the days are for homework and resting. Even with that, I'm still exhausted much of the time, though I am greatful that I have been given the supernatural strength to make it through.


14. People would be surprised to know: how much I view my illness as a blessing. To quote St. Paul in his second letter to the Church in Corinth: "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." As a Christian, I am to worship God with all of my heart, mind, soul and body... how much easier it is to worship with my whole body when there really isn't that much else to give. It makes giving everything else a bit easier, too.


15. The hardest thing to accept about my new reality has been: Not being able to sing as much as I would like. After only 10 or so minutes of singing, I am plagued with light-headedness, tingling in my arms and legs, shortness of breath, and sometimes chest pains. For church, again with supernatural power that I know HAS to come from God, I am able to work through the majority of these symptoms (though I am sitting down most of the time), but still, there are times that I need to learn how to say no and sit with the congregation.


16. Something I never thought I could do with my illness that I did was: accept this as my cross and make some good attempts to carry it faithfully and with dignity. Also, I never thought that I could even rely on God as much as I have been.


17. The commercials about my illness: Are you kidding? There are a few youtube videos, but mostly they are video blogs of other POTS sufferers.


18. Something I really miss doing since I was diagnosed is: Singing for hours at a time, not having to drink so much water and other fluids and loading my food up with salt to feel somewhat not crappy.

19. It was really hard to have to give up: my pride... my pride in having to ask for help and my pride in applying for, and using, a handicap placard, especially in my small town where quite a few people know me.

20. A new hobby I have taken up since my diagnosis is: blogging and I have been considering making beaded rosaries. I did make cord knotted rosaries before I got really sick. Also, I have been knitting some, to go along with my feelings of being an old lady.

21. If I could have one day of feeling normal again I would: Go to some place like New York City, Boston, or Baltimore that has alot of Catholic Churches and visit them. I would also get some singing time in there, perhaps in some of the lovely Churches or Cathedrals.


22. My illness has taught me: patience, humility, how much God, espeically in the second person of the Godhead, Christ, loves me... See my previous blog.

23. Want to know a secret? One thing people say that really bothers me is: "You should try......" I have access to almost everything (not alot) that is know about POTS, and I have tried almost everything that has been suggested (minus the prescription medicine... I'll let my MD handle that).


24. But I love it when people: who have similar invisable and very poorly understood diagnoses themselves (such as fibro and CFS) understands some of what I'm going through, and being able to understand some of their struggles. I also love it when people tell me what a refreshing attitude I have towards my illness and suffering in general, and how much my "personality sparkles" (that is a quote) in spite of everything that I have gone through.


25. My favorite motto, scripture, quote that gets me through tough times is: From two of the St. Therese's (or Teresa):

We always find that those who walked closest to Christ were those who had to bear the greatest trials."

~St. Teresa of Avila

"The greatest greatest honor God can do for a soul is not to give it much, but to ask much of it."

~ St. Therese of Lisieux

"Suffering is the very best gift He has to give us. He gives it only to His chosen friends."

~ St. Therese of Lisieux


26. When someone is diagnosed I’d like to tell them: I am sorry... Allow yourself time enough to grieve for what you have lost, because there are losses, but at the end of that time, don't stay down... Rely on Christ, who, if only asked, will provide you enough strength to follow His will. Never be ashamed to ask for help when you are really sick, never be afraid to lovingly, but firmly, put someone in their place when they're out of line (I have a wonderful comeback planned for if someone should make mention of my placard... "When did you get your medical licence?" When they say they haven't (which most of the time, I expect they will), I will respond "Then why are you practicing medicine without a license?"), but don't expect that even with a super-human effort to educate someone that it will work. Lean on those who believe you and who believe in you (espeically God) and use their strength to let the others just roll off your back.


27. Something that has surprised me about living with an illness is: how much faster my 70 something organ teacher can go up stairs than I can... She can run up a whole flight before I'm even on the 4th step. Also, how weak I am and how little I can do.

28. The nicest thing someone did for me when I wasn’t feeling well was: Let me whine and complain without calling me out on it, but then encouraged me to read Story of a Soul by St. Therese of the Child Jesus, and to pray ardently for strength to endure. He also reminded me much of what I know about suffering and the Catholic view of suffering, and laughed when I told him that I wouldn't stay Christian if I had been diagnosed with this before I converted to Catholicism since the brand of Protestantism I belonged to before my conversion was very weak, and pretty much ignored, suffering. This was during confession, and the other party was quite possibly my favorite priest.


29. I’m involved with Invisible Illness Week because: First, I hope to meet people in person who have an invisible illness, so perhaps we can offer each other support. Secondly, I hope to spread awareness that these disorders are real, that they are debilitating, and that there needs to be more research to learn more about them, and perhaps even find a cure. The medical community needs to learn more compassion, because as I mentioned earlier about my gallbladder, it was taken out in 2006, but I was having symptoms of gallbladder disease as early as 2001. Granted, I was much younger than most gallbladder patients, but I was convinced that it was my symptoms were caused by my gallbladder and that it needed to be treated and possibly removed. But it was 5 years, and at least 4 GI docs, (2 of which told me it was psychosomatic) and one specific test (a HIDA scan) later, before my gallbladder was removed. Guess what... the pathologist report stated that I had been having problems with it for at least 3 years prior. Doctors need to learn to actually listen to their patients, too.... Granted, it does take many, many years to earn an MD, but patients know their bodies, and if something is truely going wrong, better than someone on the outside, even though they haven't learned the fancy terms for what actually is going wrong. And not everything that isn't easily diagnosed is psychosomatic all the time (though I will admit, there are cases, but I believe those are much rarer than one would think).


30. The fact that you read this list makes me feel: happy because maybe know you will have a better understanding of what I am going through, and happier still because maybe you will rethink the nature of your relationship (if needed) with God and about the meaning of suffering and pain.