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.