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.
31.1.10
30.1.10
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.
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.
28.1.10
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.
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.
26.1.10
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!!!!
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!!!!
24.1.10
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.
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.
22.1.10
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.
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.
~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.
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!
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!
20.1.10
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!
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!
19.1.10
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.
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.
18.1.10
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.
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.
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.
17.1.10
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!
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.
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.
Fiat voluntas tua
I never did make it to Great Vespers last night... Shortly after I posted "Dream a little dream", I went to bed, and didn't wake up until 7:30 this morning. I suppose that I have done way too much this past week without enough resting up in between each activity. Just walking across a big parking lot, or through Walmart afterwards is too much for me at times, and I really, REALLY had to push myself to keep going.
This past Thursday, I had choir practice, up in the choir loft at church. Before that, I prayed Vespers and even by then, I was so exhausted and dehydrated that I couldn't even stand up for the 15 minutes it takes to pray Vespers. Even though I was sitting, I was shaking like crazy. Afterwards, I went out to buy a gallon of Gatorade (which I hate drinking) and chugged it down very quickly. Thankfully, I felt some better and was able to sit for choir practice, so I didn't faint. Again, not scared of fainting in itself... I just don't want to scare whoever is near me if I should faint.
I also am so tired this morning, despite sleeping for so long. I know I didn't sleep for too long, because the few times I woke up (just long enough to check my watch), I wasn't up very long and quickly went back to sleep. I am just tired of missing out on so much... I hate nightclubs, but I wouldn't have minded going to one last night. Or the movies.... or hanging out at a friend's house just talking and watching old John Wayne flicks. I am somewhat angry on what I miss out with POTS, but I can't stay angry, because then that will feed into depression, which will cause me to be able to do even less. I am sick for a reason, and right now, that reason seems to be offering up my sufferings, frustrations, and anger to Christ. Even He didn't want to go through His greatest moment of suffering, but... "Not my will, but thine be done". Lord, help me pray that, with both of my words, and most especially my actions!
This past Thursday, I had choir practice, up in the choir loft at church. Before that, I prayed Vespers and even by then, I was so exhausted and dehydrated that I couldn't even stand up for the 15 minutes it takes to pray Vespers. Even though I was sitting, I was shaking like crazy. Afterwards, I went out to buy a gallon of Gatorade (which I hate drinking) and chugged it down very quickly. Thankfully, I felt some better and was able to sit for choir practice, so I didn't faint. Again, not scared of fainting in itself... I just don't want to scare whoever is near me if I should faint.
I also am so tired this morning, despite sleeping for so long. I know I didn't sleep for too long, because the few times I woke up (just long enough to check my watch), I wasn't up very long and quickly went back to sleep. I am just tired of missing out on so much... I hate nightclubs, but I wouldn't have minded going to one last night. Or the movies.... or hanging out at a friend's house just talking and watching old John Wayne flicks. I am somewhat angry on what I miss out with POTS, but I can't stay angry, because then that will feed into depression, which will cause me to be able to do even less. I am sick for a reason, and right now, that reason seems to be offering up my sufferings, frustrations, and anger to Christ. Even He didn't want to go through His greatest moment of suffering, but... "Not my will, but thine be done". Lord, help me pray that, with both of my words, and most especially my actions!
16.1.10
"Dream a little dream of me"
A timeline of my activities for today: I slept in until 11:30, went to Oak Ridge with my dad for lunch, we picked up a few things from Wal-mart, I changed (with alot of help from my brother) my windscreen wipers and added fluid, and now I am sitting here about to fall asleep. I really, really want to go to Great Vespers tonight, but I am afraid that if I do, I won't be able to make it to both Divine Liturgy and Latin Mass tomorrow, even if I were to sit the whole time and use my handicapped placard. I am somewhat tired of being tired all of the time, and having to carefully plan what I do, and make decision about what to do (or not do) based upon my energy level and how much I fear that I am going to faint. Ok... enough pity-party for now.
One thing that I hear preached from the pulpit alot is dying to self... to conform your own self-will to that of God's will. Like a grain of wheat that falls to the ground, it must die before it bears much fruit. Though I am frustrated with this illness most of the times, I am am greatful for the opportunities that I am given for growth, for a closer relationship with God, and for learning things, about myself and others. I do not want this cross to carry, but for some reason, this is the cross that God has so lovingly chosen and placed on me. I cannot carry it by myself, and I cannot carry it if I am not following +Jesus Christ+, but in following Him, He can help me carry my burden, and I hope, and pray, that I will be able to help Him carry some of His.
One thing that I hear preached from the pulpit alot is dying to self... to conform your own self-will to that of God's will. Like a grain of wheat that falls to the ground, it must die before it bears much fruit. Though I am frustrated with this illness most of the times, I am am greatful for the opportunities that I am given for growth, for a closer relationship with God, and for learning things, about myself and others. I do not want this cross to carry, but for some reason, this is the cross that God has so lovingly chosen and placed on me. I cannot carry it by myself, and I cannot carry it if I am not following +Jesus Christ+, but in following Him, He can help me carry my burden, and I hope, and pray, that I will be able to help Him carry some of His.
15.1.10
Ok.... so I was mistaken...
I was just really dehydrated. Once I drank some water, I felt well enough to add another post.
- How does POTS affect me?
I've already mentioned one way... I get really dehydrated very easily, which makes my symptoms worse. Today I drank over 96 oz. of fluid, and I still feel like I could drink that amount again. I am afraid to walk across the road or a large parking lot by myself because, though I have not fainted with POTS yet, I have come very close. I can't stand, sit, and kneel with the rest of the Catholics at church... not so much that I'm afraid of fainting in itself, I don't want to scare the crap out of everyone around me if I do. I have to learn how to pace myself and ration my energy, because if I do what is a normal amount of energy for non-affected people, I will be paying, and very dearly, for at least the next 3 days, since I will barely be able to leave the bed, much less get showered, dressed and leave the house. Stairs also scare the crap out of me because they exert me way too much, and I'm afraid that I'm going to fall down them.
On a positive note, I am learning some patience with myself, and hopefully that will translate into patience with others. I am drawing closer with God, using my sufferings to join with those that Christ suffered on the cross. My pride isn't so puffed up, because I have to ask for help since I can't do all that I want to do by myself. My prayer life has never been this strong, and I don't think that I have ever been this close to the Triune God. I value the times I feel well much more now and don't take them for granted. On a less serious note, I now get the best parking spots thanks to my shiny blue and white placard on my rearview mirror. I wish that I didn't have to have it.
- Is there a cure/treatment for POTS?
Unfortunately, there isn't a cure for POTS, nor is there even a treatment for the disease itself. The best that I can hope for is that some medications will manage the symptoms, and that I will learn how to live with this disease. I am determined that I will not be dictated to by this... that I will be doing the dictating. That hasn't happened so far, but it helps me push a bit more through the exhaustion and the feeling of nearing passing out. I have accepted that I will be limited in what I do.... I WILL NOT accept that my life is over and that I should just give up.
- Do you always have the same symptoms?
Not nessicarily. Though I always feel the effects of POTS, I don't always have the same symptoms(thank God, because constant chest pain would really get to me after awhile). Some days, I have more energy (and I have to really fight the urge to do everything I want to do on those days) and I don't feel as faint, and there are other days that I can barely make it out of bed.
If anyone has a question about POTS, please post it either to my facebook page or on the comments section here, and I'll be happy to answer it.
What is POTS?
POTS, or Postural Orthostatic Tachycardia Syndrome, is caused by an autonomic dysfunction. The hallmark symptom is a heart rate that raises over 30 or more beats per minutes and/or exceeds 120 bpm upon standing. Other symptoms are of presyncope (near fainting), blood pooling to the legs when someone with POTS stands for too long (causing them to be mottled, purple, and sometimes swollen), excessive fatigue, and chest pains. Because POTS is caused by a disorder of the autonomic system, other bodily systems controlled by the autonomic system (such as digestion, respiration rate, perspiration, urination, thirst, pupil diameter, and sleep cycles) can be affected. Delayed gastric emptying, nausea, vomiting, diarhea and constipation (some people are affected cyclically with both), lack of or excess sweating, excessive urination and thirst, and vision problems, at time with uneven pupils. Also, excessive sleeping or insomnia are common to those who are suffering with POTS
Sometimes POTS is a primary disorder (meaning that there is no underlying disease that is causing the symptoms), but it can be secondary to Lyme disease, Ehler-danlos syndrome, can be activated by a trauma (such as surgery or a car accident), pregnancy, or severe illness (such as mono, influenza, or a bad cold). Teenagers, especially during growth spurts, may develop POTS, though most will outgrow their symptoms by the time they reach their early 20's.
There is so much more that I could write about POTS, but being affected with POTS myself, I have no more energy to write more at this time. Be looking for future posts.
Sometimes POTS is a primary disorder (meaning that there is no underlying disease that is causing the symptoms), but it can be secondary to Lyme disease, Ehler-danlos syndrome, can be activated by a trauma (such as surgery or a car accident), pregnancy, or severe illness (such as mono, influenza, or a bad cold). Teenagers, especially during growth spurts, may develop POTS, though most will outgrow their symptoms by the time they reach their early 20's.
There is so much more that I could write about POTS, but being affected with POTS myself, I have no more energy to write more at this time. Be looking for future posts.
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