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.
1 comment:
i can really understand what you have written. and sometimes that can help. i know no real-life pots sufferers, so no one to talk to. blogs are such a great way to find empathy with people. keep writing. x
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