Trying to stay positive...

It is so tempting to slip into a deep depression about my disability, about the fact that I can't or am limited in doing the things that I once loved to do, that I couldn't imagine my life without doing (such as singing). I am actually tempted daily to just throw in the towel... "What's the effin point? It's not like I'm going to be cured, and I'll be hopelessly disabled for the rest of my life". But, though I have suffered with depression for other things before, I do not want to have that view point... If I should happen to fall into that, then it really will be "What's the point?" I am struggling to find joy in the midst of all of my suffereing with these symptoms and inconviences of being worried about what others think about me when I, a seemingly healthy and young 23 year old, park in a handicap spot, of not being able to plan things in advance because I just don't know what I'll feel like even from day to day (sometimes from hour to hour). I am very happy that I am Catholic, that I know about the Catholic understanding of suffering and of offering up those sufferings for the good of the world.

And I don't want to slip into a depression about what I can't do... Depression isn't fun and is some place that I never want to go to again... Again, focusing on what I can't do, and being too bothered about my symptoms (mostly they are more of a nusience than anything, with a few scary moments thrown in), is definately going to cause the depression. Another thing that helps is the Catholic theology of "offering it up"... offering up my disability and my pain and my fears to God... To pick up this cross (not the one I would have chosen, but the one that I have, for better or for worse) daily and try to follow him. And in carrying my cross, I help Him carry His, and in helping Him, Christ helps me carry mine. I see my illness as a wonderful opportunity to grow closer to God, the source of all joy, love, and peace. Since I have decided that offering up my sufferings is what I am going to do, I have felt, though not physically better, an increasing in the joy and peace, and love and compassion towards my fellow man (and woman.. :D) Yes, it does hurt being so vulnerable and so loving, but I am well to familiar with the alternative, of being so emotionally closed off that I couldn't feel a thing. I would rather have a million disapointments and hurts than to be that emotionally numb again.

Speaking of love, everytime I contemplate Christ's crucifixion, gaze upon a crucifix, I am reminded of His all-emcompasing love for us. He is God... with a snap of the fingers or a blink of an eye, His plan for salvation could have come, without such the heavy cost of His own human life. And yet, out of love, He chose to take human flesh, to know from first-hand experience what it is to be human, in every way, except sin, be just like us, and then to suffer so for the sake of our soul... In so many ways, my sufferings are miniscule in the face of His, not just with the physical suffering, but the emotional and mental suffering, so much so that He physically sweated blood, and begged the Father to not make Him do it... but in the end.. "Not my will, but Yours, be done." Please God, help me not only to utter those words, but to live them in my life. Dear God, help me to love You just a fraction of how much You love humanity. Help me to grow in that love every single day!

Thanks be to God, I'm feeling better today....

The cold that I've caught (thanks Mom and Dad!) doesn't seem to be that bad... or at least the Mucinex and the Neti Pot that I've used, and the elderberry and zinc lozenges seems to have helpd my symptoms somewhat. I'm still really tired, but I found some new products that at least will help me in my quest to stay hydrated. These electrolyte tablets don't taste that horrible, and I have found an electrolyte packed gel made by PowerBar, that though I don't like the taste so much, is less than 1.5 oz and is somewhat more palatable than Gatorade (which I don't like at all) with similar electrolyte levels as Gatorade. Drinking alot of water today, along with these electrolyte replacements, has helped me to feel somewhat better, though I suspect that I will be exhausted for several days.

I have found that singing is much more difficult now, as I had my first voice lesson today since my diagnosis (and my first one since the symptoms became really bad). I had to sit for the whole lesson, and I don't have as much air as I used to. I also get somewhat dizzy more quickly, and for most of the lesson my hands and mouth were tingling. This, perhaps, along with the brain fogs, is the most distressing symptom of POTS for me, as singing and music is my life. Having to leave organ practice early yesterday and having so many symptoms during my voice lesson today has really distressed me, and I am trying very hard to not be down by this. The palpations, tachycardia, dizziness, exhaustion, chest pains... most of those are just annoyances... they bother me, but not so much. The fact that I can't sing... I should love the God of gifts more than the gifts of God... and I want to, but it is taking a while more for my mind to catch up to my will. Please God, help me!

I am glad that I have the next few days off from school... I go back on Monday, and the only things I have planned until then is a choir practice tomorrow, and Saturday and Sunday at Church, though those plans aren't written in stone, as I don't know if I will be able right now to do that then. I am glad that I have to slow down and not plan everything to a 't', as that takes much pressure off of me.... it's a miracle that it doesn't bother me any more than it is that I can't plan everything out. That's one good thing that I can say about POTS. Another is the tag that hangs from my rearview mirror that enables me to park in reserved spots, that without I wouldn't even be able to attend school, as walking from the very back of the parking lot (which fills up very early) would exhaust me so much that I would be worthless in class. Praise God for small miracles!

Scary moment today...

whilst driving. I had an organ lesson, and then afterwards I was supposed to practice for 3 hours... unfortunately I could only practice for one hour, since I was feeling very POTSy... but that wasn't the end of the scary moments. It was 45 minutes drive home, and about 20 minutes into the drive, I had to pull over on the side of the rode, since I was having severe chest pains, shortness of breath and was very light-headed. I thought that I was going to just stay there for a few minutes, until the symptoms passed, but 15 minutes later, when the State Trooper pulled up behind me and called an ambulance. I didn't go to the hospital, though I was really close to going... I called my parents, actually, to have them come and move my car, but after the EMT's checked me over, and they saw that my vitals were alright, I decided not to go. Besides, by that time, the lightheadedness was going away and the chest pains wasn't as bad, so I called my parents back, and decided to go home, where I promptly passed out for about 2 hours.

I was so set on not having any drama... and more imporantly to have all 3 hours of my practice, and then afterwards pray Vespers... I am glad that I am alright, but I am just tired of being so tired and sick all of the time... I'm too tired to post any more right now, so I'll just go to bed right now.

Feeling not so good... but not so bad, either.

My resting pulse rate right now is 95.. Standing up, it shot up to 125 and I had a big feeling of pressure in my head. My vision blurred for a few moments and I have started sweating. I am always scared to stand up, because there is the fear that I will faint. I have let people at Church (where I do most of my sitting, standing, and kneeling than anywhere else) that should I faint, just elevate my feet, and unless I'm out for more than 2 minutes, just leave me be. That like someone who has epilepsy, every seizure isn't a medical emergency, like with me, every fainting spell isn't an emergency.

I start back school tomorrow... Tuesday is my light day. I have only an organ lesson at noon. I have time for lunch afterwards (though I will be picking up St. Therese's Story of a Soul over my break) and then on to organ practice. I am not looking forward to all of the steps, but I will make sure that I have plenty of Gatorade in my system, and with me, and I will make sure that everything else (...ahem... hitting the corner) is taken care of.

I am hoping ardently that I will be able to manage this full load. I hope that I have scheduled all of my classes such that I will be able to not miss any (or too many) classes. I know that I can't shedule a POTS crash, but I am praying that if I'm going to have one, it will happen over my 4 day break.

Another early to bed, but late to rise

I zonked out on the couch at about 6:30 last night... at about 7:30, my mom moved me to my bed... and I didn't wake up until about 8:30 this morning. I still am tired, and now I'm really sore (more so than usual) from laying down for so long. But I'd be terribly exhausted if I hadn't slept that much. I really need to learn how to pace myself, and more importantly to say no, even to things that I really, really want to do. I am just glad that school is out today (thank you Martin Luther King, Jr.... not just for my day off from school, but for everything else that you endured and suffered for the sake of your fellow man). I am close to reaching a very agonizing decision, and that's whether or not to only go to one Eucharistic Service on Sundays... Divine Liturgy or Extraordinory Form, because even with the modifications I've found that helps me get through, I am still very exhausted on Sunday evenings, and sometimes Mondays. This is an extremely agonizing decision to make, since I do enjoy and love participating in both. Also, I am somewhat needed to sing at both (yes, they would survive without me, but I know that when I'm not there that I'm very much missed). Also, minus the music, I have become close to both communities, and I consider most people at both places close friends. Some have even become like family to me.

I am trying to take everything one day at a time, and I know that whatever decision I make, it isn't set in stone--that it can be changed depending on how I'm feeling. I just can't imagine not having both to attend on my Sundays.

I have made my school schedule (which I finally start back tomorrow!!!) to where I don't start my first class until 11:00 am, and where I have only two very busy days (everything is in the same building, thank God), and one day (my organ lesson) where I have only one class. That happens to be the same day where I have scheduled practice time only 5 miles away. The bad part about the practice place is that the organ is in the choir loft, up a flight of stairs. I also have an overactive bladder, and the bathroom is down in the basement, so if I should have to use the restroom during practice, that involves 4 flights of stairs. Oh well, I'll just eat extra salt and pray to whichever patron saint is responsible for kidneys. I know my professor at my 11:00 am class isn't extremely concerned about attendance (he doesn't like people to miss class, but he understands that one's health or the health of someone's child is more important than even a final in his class, and will reschedule to to best of his ability), so I am not too concerned if on Monday morning I can't get out of bed. As long as I e-mail him the same day, he won't be either. I just hope that I know someone in that class well enough to take notes for me if and when I can't make it.

I am also considering taking advantage of the student disability services, perhaps to have a note-taker or a tutor (only if I need it), because there are days the brain fog is so bad that I can barely remember my name. If I have to take the stairs, then it's that much worse, plus I'm usually shaking too much to write legibly for at least the first half-hour of class. I do have a handicap tag that I'm sure will get much use at school, because even walking across the parking lot scares me... I don't want to faint (and there are many bad drivers where I live... being run over by a car isn't something that I want to experience). Plus, after all of that extertion, I am pretty much useless when it comes to academics.

Oh well... Thankfully I am feeling... well, never normal, but somewhat more functioning that usual right now. I'm going to take advantage of that and buy some school supplies.

Anger... among other things.

Dealing with the anger from having my illness is a very important thing to do. I cannot give into the anger... I can't even focus so much on the anger, because well... It's not like going into a hissy fit about being sick is going to do anything to make me magically get well. And the anger and depression is NOT a place I want to go. So, when I am feeling the anger, I try to focus on how I can use this illness for good. My priest suggest that I read Story of a Soul by St. Therese of Liseux, so within the next couple of days, I'll be making a stop at the Paraclete (the Catholic bookstore in Knoxville).

The anger is mostly directed at God. I know, I know... if you love God so much, how can you be angry at Him? And that's a valid question. I am a weak human being (who is learning especially how much of a weak human she is), so because of that wounded nature, I'm bound to get somewhat angry. In talking with others, through confession, through writing, I am hoping the anger will become something that will be dealt with, and something that I can move past. I don't want to be an angry person, so I am hoping that this plan will work.

Perhaps the anger comes most from thinking that my life was going in one direction (that I was being prepared to join a convent), but now, being sick, I doubt that a convent would have me. Granted, I have not directly talked to a convent about the fact that I have POTS, but even if they would have me, I can't say that I would even go now... I would be such a burden on the other sisters and would not, I feel, be able to pull my own weight as far as working in whatever industry that particular convent does to support itself. My anger is at the death of a dream, of a wish, of a most ardent desire. So sue me if I am not a bit upset about that.

Again, though, I am focusing on I... me, me, me again. Pride is getting the best of me. I shouldn't be worrying about whether or not my illness will disqualify me from becoming a nun, because like what my priest has told me before... "God does not call the qualified. He qualifies the called". My focus has been all wrong, and I need to get back to focusing on serving God with all of my heart, mind, soul, and body. Having less to serve with my body makes it easier to serve God will all of it. I wish I could see that for the blessing it is. As the aforementioned preist has also told me, if God wants me to be a nun, then I will be a nun. In all things, I must be willing to say "Yes". Please God, make me willing!

Sit, kneel, stand

Today at both services was bad as far as the presyncope and other symptoms go. It wasn't so bad at Divine Liturgy, because except for the consecration and a couple other parts of the service, I stayed seated. Even doing that, though, had me exhausted. Somehow, though, I found the strength (or rather, I was given the strength) to make it through Latin Mass. There is much more sitting, standing, and kneeling there, and again, though I sat through most of the kneeling (and standing) parts, I was so exhausted that when the choir practiced some after the Mass, I sat the whole time. In fact, I was so tired on the drive home that I was concerned how I was going to make the 45 minute drive back. But, make it back home I did. I have been told that with POTS, the quality of life and level of disability is similar to that of congestive heart failure or COPD. I'd believe it, and I have a new-found respect for those who suffer with those illnesses.

I was going to write something else about how POTS affects me, but the brain fog (yet another symptom of POTS) is really bad when I get tired, so... gah, I'll leave it here.