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.