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Tuesday, November 10, 2009
Monday, November 9, 2009
Update 3: If it's not one thing, it's another. And if not, you're dead.
Ok, now just a general life update.
I don't remember if I said it in here, but I'm currently working as the High School Youth Group leader for my church, which is pretty awesome. Doesn't pay tons, but it pays enough that I can afford to do it. It's a very new challenge for me, so it's a lot of fun. Very very different than the college ministry that I'm used to, but I'm learning. My kids are pretty fantastic, and hopefully I'm provided them with something good enough for them to be taking something away from it. I don't feel that much older than my kids, but there is such a big difference, mostly just in understanding of the world. I keep trying to put myself back into my high school frame of mind. They are so...fresh, you know? I adore them. But it's a definite challenge. I'm also in charge of the new music group for our new Youth Mass (1st Sunday of each month). That is another challenge altogether because I can 1) sing, and 2) play a tiny bit of guitar. So trying to pull musicians and singers together is all kinds of difficult, because we are all very unexperienced--me at leading musicians, them at leading music for masses. But we are making progress!
Sooo...I work at church. And I'm taking a class at city. And I have no idea where my life is going. Every career path that I considered while doing my undergrad is now off the table. Due to recession/state budgety stuff, my back-up plans are pretty much off the table. I'm now considering back-up back up plans, but I don't even know if those are possible either. So I, Katie Robinson, Queens of Plans, have no plan at the moment. I shall simply wait and see where things go. (Well, not simply, but I'm not going to super stress is what I mean.) I know the Lord has plans for me, "plans to prosper [me] and not to harm [me], plans to give [me] hope and a future." I am not perishing; I am trying to weather this storm. So, we'll see where I come out on this one.
As far as the emotional repercussions of all of this goes ("this" being CFS/planlessness/all number of challenges), I'm going to say: its hard. It's really hard. Harder than I pretend that it is (even to myself). I think I'm still slightly in denial about all of this. I'm definitely past the denial where I felt like I didn't need to tell people about my CFS, but it's still not ingrained in me to think like it's there all of the time. I tend to make plans, and then have to say, "Wait! Maybe I can't do that." A friend of mine recently asked me to be in a movie for his class project, and I said, "sure," only hesitating about what I might be asked to do in this film. Only last night did I realize: I might not be able to actually do the filming when they need it, because that might be a relapse day. It's hard to be so unreliable, both for myself and other people. Frustrating. I try to limit my responsibilities so that I have less room to let people down, but even that is hard for me (it's hard to say no). It's also hard because I have to be very reliant on other people. I used to drive all over and visit people, but now I won't drive anywhere alone (around town is about all I trust myself with, and even then not always). I feel very limited. "I wish...to be free from my gilded cage." I guess this caged bird needs to practice her singing.
To be perfectly honest, Patrick is probably my saving grace. He always felt like a Godsend to me from the beginning, and I saw plenty of evidence of it before, but with this challenge, he is especially gracious. He makes me feel like I'm not sick. Not that he makes me feel better, persay--though, seriously, you can't deny the healing power of touch, especially bear hugs--but it's more that my sickness doesn't matter. There are a lot of things that I can't do and a lot of times that I can't do things that were already planned, and with Patrick, it's never an issue. He never appears to be disappointed with me when we have to change our plans to accommodate my weaknesses, and he's oh-so-so forgiving when my tiredness (or at least I'll attribute it to that : p) makes me a bit crabby (or majorly cranky, as the case may be), which is really helpful in making this bearable. But there's something else, and before I go here I'm going to say that you have to take this with a grain of salt. Patrick also doesn't put pressure on me to get better. Of course he wants me to get better and he chides me about taking my meds and using my oils, but when he asks me, "how are feeling today?" he never says, "I hope you feel better." And I absolutely love that about him. Here's where I'm in dicey territory, because now it appears that I'm not appreciative of well-wishes when that is entirely not the case. I do appreciate it. It's just hard sometimes too. Because right now I'm not better, and I'm not going to be better for awhile. We have to work with the Katie that we have for the moment, instead of always hoping for the better-feeling one. Hopefully I will feel better, but the reality of the situation is that it's possible I won't. So it's nice to have this one person at least who isn't super focused on me getting better immediately. While I know he'd like me to be the healthy version of me, he still loves the sick version of me. <3 And that is incredibly valuable to me. So please please please don't stop telling me that you hope I get better, because I need that support too, for sure for sure. Patrick just helps to take the pressure off a little bit, so that I still feel lovable/valuable as the lower-functioning Katie. : )
This is a weird age to have something like CFS. I have a few friends that like the only way that hang out is at clubs or bars or something...and that's nearly impossible for me. I can't really go hiking. The last time I went swimming I had a serious crash afterwards. My options just keep getting more and more limited in terms of hang out options. Which is why I hang out with like 5 people, because they are the ones that are used to and well adjusted to the "hanging out might mean watching a movie and taking a nap" reality of my life. I'm getting kind of lonely, though. I'm losing my schmoozablity. : ) It's ridiculous, but sometimes it's really hard for me to carry on a conversation with the people I'm sharing a meal with because I can't focus well enough on the conversation. I think I'm turning into an unintentional hermit. Or weird, quiet person who sits in the corner at parties. Either way.
K, I'm tired now. Nap time. Love you.
I don't remember if I said it in here, but I'm currently working as the High School Youth Group leader for my church, which is pretty awesome. Doesn't pay tons, but it pays enough that I can afford to do it. It's a very new challenge for me, so it's a lot of fun. Very very different than the college ministry that I'm used to, but I'm learning. My kids are pretty fantastic, and hopefully I'm provided them with something good enough for them to be taking something away from it. I don't feel that much older than my kids, but there is such a big difference, mostly just in understanding of the world. I keep trying to put myself back into my high school frame of mind. They are so...fresh, you know? I adore them. But it's a definite challenge. I'm also in charge of the new music group for our new Youth Mass (1st Sunday of each month). That is another challenge altogether because I can 1) sing, and 2) play a tiny bit of guitar. So trying to pull musicians and singers together is all kinds of difficult, because we are all very unexperienced--me at leading musicians, them at leading music for masses. But we are making progress!
Sooo...I work at church. And I'm taking a class at city. And I have no idea where my life is going. Every career path that I considered while doing my undergrad is now off the table. Due to recession/state budgety stuff, my back-up plans are pretty much off the table. I'm now considering back-up back up plans, but I don't even know if those are possible either. So I, Katie Robinson, Queens of Plans, have no plan at the moment. I shall simply wait and see where things go. (Well, not simply, but I'm not going to super stress is what I mean.) I know the Lord has plans for me, "plans to prosper [me] and not to harm [me], plans to give [me] hope and a future." I am not perishing; I am trying to weather this storm. So, we'll see where I come out on this one.
As far as the emotional repercussions of all of this goes ("this" being CFS/planlessness/all number of challenges), I'm going to say: its hard. It's really hard. Harder than I pretend that it is (even to myself). I think I'm still slightly in denial about all of this. I'm definitely past the denial where I felt like I didn't need to tell people about my CFS, but it's still not ingrained in me to think like it's there all of the time. I tend to make plans, and then have to say, "Wait! Maybe I can't do that." A friend of mine recently asked me to be in a movie for his class project, and I said, "sure," only hesitating about what I might be asked to do in this film. Only last night did I realize: I might not be able to actually do the filming when they need it, because that might be a relapse day. It's hard to be so unreliable, both for myself and other people. Frustrating. I try to limit my responsibilities so that I have less room to let people down, but even that is hard for me (it's hard to say no). It's also hard because I have to be very reliant on other people. I used to drive all over and visit people, but now I won't drive anywhere alone (around town is about all I trust myself with, and even then not always). I feel very limited. "I wish...to be free from my gilded cage." I guess this caged bird needs to practice her singing.
To be perfectly honest, Patrick is probably my saving grace. He always felt like a Godsend to me from the beginning, and I saw plenty of evidence of it before, but with this challenge, he is especially gracious. He makes me feel like I'm not sick. Not that he makes me feel better, persay--though, seriously, you can't deny the healing power of touch, especially bear hugs--but it's more that my sickness doesn't matter. There are a lot of things that I can't do and a lot of times that I can't do things that were already planned, and with Patrick, it's never an issue. He never appears to be disappointed with me when we have to change our plans to accommodate my weaknesses, and he's oh-so-so forgiving when my tiredness (or at least I'll attribute it to that : p) makes me a bit crabby (or majorly cranky, as the case may be), which is really helpful in making this bearable. But there's something else, and before I go here I'm going to say that you have to take this with a grain of salt. Patrick also doesn't put pressure on me to get better. Of course he wants me to get better and he chides me about taking my meds and using my oils, but when he asks me, "how are feeling today?" he never says, "I hope you feel better." And I absolutely love that about him. Here's where I'm in dicey territory, because now it appears that I'm not appreciative of well-wishes when that is entirely not the case. I do appreciate it. It's just hard sometimes too. Because right now I'm not better, and I'm not going to be better for awhile. We have to work with the Katie that we have for the moment, instead of always hoping for the better-feeling one. Hopefully I will feel better, but the reality of the situation is that it's possible I won't. So it's nice to have this one person at least who isn't super focused on me getting better immediately. While I know he'd like me to be the healthy version of me, he still loves the sick version of me. <3 And that is incredibly valuable to me. So please please please don't stop telling me that you hope I get better, because I need that support too, for sure for sure. Patrick just helps to take the pressure off a little bit, so that I still feel lovable/valuable as the lower-functioning Katie. : )
This is a weird age to have something like CFS. I have a few friends that like the only way that hang out is at clubs or bars or something...and that's nearly impossible for me. I can't really go hiking. The last time I went swimming I had a serious crash afterwards. My options just keep getting more and more limited in terms of hang out options. Which is why I hang out with like 5 people, because they are the ones that are used to and well adjusted to the "hanging out might mean watching a movie and taking a nap" reality of my life. I'm getting kind of lonely, though. I'm losing my schmoozablity. : ) It's ridiculous, but sometimes it's really hard for me to carry on a conversation with the people I'm sharing a meal with because I can't focus well enough on the conversation. I think I'm turning into an unintentional hermit. Or weird, quiet person who sits in the corner at parties. Either way.
K, I'm tired now. Nap time. Love you.
Update 2: Oh, Canada!
A few weeks ago, my mom and I went to Canada to take me to a wellness center to work with this woman that my parent's met last summer. It was pretty incredible. When I came back after a week with her, I felt more alive than I have in the past few years. Unfortunately I haven't been able to maintain that too well since I've been back, but I'm trying to get myself into good habits. Basically, Janet was helping me to figure out what I needed to work on, and how to do that.
The Plan:
1) Establish a disciplined sleep schedule (regular bed time and wake up time, even when I'm still tired). This has been a particular challenge. Let's just say, I'm working on it.
2) Eat properly/healthily, with a few smalls meals a day instead of 3 bigger ones. And there's a whole thing with alkaline and acidifying foods, but mostly I'll just say balancing foods well. This is still pretty challenging, but I would say that I'm definitely doing better on this one. More raw foods/veggies, WAY less things that you can just put in the microwave. I actually bought and cooked fish one day, that was a pretty big moment for me. Unfortunately, my "busy" schedule (cushy for other people, maybe, but pretty tough for me) makes it hard to plan out food and stuff well. But I'm trying. I'm currently boiling some rice that I'm going to have with a salmon patty, some veggies, and maybe some eggs. That sounds tasty!
3) Nutritional supplements to try to help me absorb enough nutrients, because at my current health state, I am not able to properly absorb business. I do pretty well on those, but I still don't always take them all everyday. But I'm do pretty well. : )
4) Oils (essential oils, blends mostly) to help my body have a chance to sort of "break the pattern" of CFS. Janet says that they help to change the frequency of my cells, to get them away from the frequency of CFS (or, a better way to visualize it maybe is that they help keep my cells from returning to their "muscle memory" positions of CFS). Maybe this sounds bogus, but they help a lot, so I'm just going to go with yes, that's what they are doing. When I was in Canada, Janet would give me an oil treatment every morning after our healthy breakfast, and I always felt AMAZING after those. I would have the energy to go out and see stuff with Mommy. Here, I have some of the oils, but I can't give myself an hour long oil treatment every morning, so it's not quite the same. Need to work on that too.
So, I have things to do, and I'm trying to incorporate them into my life in a way that actually works which has been the challenge, but I definitely know that they make a difference, and I am doing better than before I left. Also, Janet thinks that it might be possible with proper nutrition/supplementation for me to eventually get off of the Atenolol and my body might be able to do what it should again, so that I don't have to be on Atenolol for the rest of my life. I know that right now the Atenolol makes a really big difference for me, so I'm definitely not ready to try to go off of it anytime soon, but maybe after these next six months or something. We shall see.
Moral of this story: I am trying to develop good habits, and am having a bit of trouble actually playing that out. But I'm working on it. : )
The Plan:
1) Establish a disciplined sleep schedule (regular bed time and wake up time, even when I'm still tired). This has been a particular challenge. Let's just say, I'm working on it.
2) Eat properly/healthily, with a few smalls meals a day instead of 3 bigger ones. And there's a whole thing with alkaline and acidifying foods, but mostly I'll just say balancing foods well. This is still pretty challenging, but I would say that I'm definitely doing better on this one. More raw foods/veggies, WAY less things that you can just put in the microwave. I actually bought and cooked fish one day, that was a pretty big moment for me. Unfortunately, my "busy" schedule (cushy for other people, maybe, but pretty tough for me) makes it hard to plan out food and stuff well. But I'm trying. I'm currently boiling some rice that I'm going to have with a salmon patty, some veggies, and maybe some eggs. That sounds tasty!
3) Nutritional supplements to try to help me absorb enough nutrients, because at my current health state, I am not able to properly absorb business. I do pretty well on those, but I still don't always take them all everyday. But I'm do pretty well. : )
4) Oils (essential oils, blends mostly) to help my body have a chance to sort of "break the pattern" of CFS. Janet says that they help to change the frequency of my cells, to get them away from the frequency of CFS (or, a better way to visualize it maybe is that they help keep my cells from returning to their "muscle memory" positions of CFS). Maybe this sounds bogus, but they help a lot, so I'm just going to go with yes, that's what they are doing. When I was in Canada, Janet would give me an oil treatment every morning after our healthy breakfast, and I always felt AMAZING after those. I would have the energy to go out and see stuff with Mommy. Here, I have some of the oils, but I can't give myself an hour long oil treatment every morning, so it's not quite the same. Need to work on that too.
So, I have things to do, and I'm trying to incorporate them into my life in a way that actually works which has been the challenge, but I definitely know that they make a difference, and I am doing better than before I left. Also, Janet thinks that it might be possible with proper nutrition/supplementation for me to eventually get off of the Atenolol and my body might be able to do what it should again, so that I don't have to be on Atenolol for the rest of my life. I know that right now the Atenolol makes a really big difference for me, so I'm definitely not ready to try to go off of it anytime soon, but maybe after these next six months or something. We shall see.
Moral of this story: I am trying to develop good habits, and am having a bit of trouble actually playing that out. But I'm working on it. : )
Update 1: Table Tilt says "POTS!"
Today it is my goal to update this at least a bit. Let's see how this unfolds:
So almost two months ago now I had a table tilt test at St. Agnes. My cardiologist set it up to test for neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS), hopefully one of which was what was causing a lot of my dizziness/wilting.
This is the test where the strap you to a table, and after lying down for about 20 minutes, raise you up to almost standing position for half an hour and watch what your heart rate and blood pressure do. Long story stort: due to the nature of hospitals and whathaveyou I was in the hospital for over 4 hours (scaring the crap out of Patrick and Tanya who went with me and were in the waiting room the whole time--and my mom who was calling Tanya for updates). I ended up lying down for over an hour, with 2 EKG's hooked up to me (in case one glitched). It was kinda of an awkward test, and I was getting pretty stressed out because my cardiologist kept saying, "everything looks fine," (which was not what I wanted because I wanted something we could treat!). But by "everything looks fine" he really meant "you don't have NMH, you have POTS" which doesn't show up until they put me back down again. So then they had to play with me and put me up and down again a few times to see what I did (but much shorter intervals) which was not super comfortable, but whatevs. But my prize: I left the test with a prescription!
So, I have POTS. Postural orthostatic tachycardia syndrome. It means that my heart rate is too high when I'm upright, and it's actually a nervous system problem, not a cardio problem. My autonomic nervous system doesn't read "upright" properly, and so make my heart rate all crazy. I'm on half a pill of Atenolol a day (and this are the tiniest pills ever, so it's hard to imagine that half of one does anything--but it totally does!) for the next six months, and then we'll re-eval. But it super super helps, meaning: I don't have to lay down everytime I eat something substantial, I can have a conversation with someone while standing up, I can sit through meetings/classes without feeling like I'm going to pass out if I stay in that chair one more minute. Basically: I don't feel like I'm going to pass out all the time anymore. Yay! I still have bad days, but the good days are a lot better. : )
So almost two months ago now I had a table tilt test at St. Agnes. My cardiologist set it up to test for neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS), hopefully one of which was what was causing a lot of my dizziness/wilting.
This is the test where the strap you to a table, and after lying down for about 20 minutes, raise you up to almost standing position for half an hour and watch what your heart rate and blood pressure do. Long story stort: due to the nature of hospitals and whathaveyou I was in the hospital for over 4 hours (scaring the crap out of Patrick and Tanya who went with me and were in the waiting room the whole time--and my mom who was calling Tanya for updates). I ended up lying down for over an hour, with 2 EKG's hooked up to me (in case one glitched). It was kinda of an awkward test, and I was getting pretty stressed out because my cardiologist kept saying, "everything looks fine," (which was not what I wanted because I wanted something we could treat!). But by "everything looks fine" he really meant "you don't have NMH, you have POTS" which doesn't show up until they put me back down again. So then they had to play with me and put me up and down again a few times to see what I did (but much shorter intervals) which was not super comfortable, but whatevs. But my prize: I left the test with a prescription!
So, I have POTS. Postural orthostatic tachycardia syndrome. It means that my heart rate is too high when I'm upright, and it's actually a nervous system problem, not a cardio problem. My autonomic nervous system doesn't read "upright" properly, and so make my heart rate all crazy. I'm on half a pill of Atenolol a day (and this are the tiniest pills ever, so it's hard to imagine that half of one does anything--but it totally does!) for the next six months, and then we'll re-eval. But it super super helps, meaning: I don't have to lay down everytime I eat something substantial, I can have a conversation with someone while standing up, I can sit through meetings/classes without feeling like I'm going to pass out if I stay in that chair one more minute. Basically: I don't feel like I'm going to pass out all the time anymore. Yay! I still have bad days, but the good days are a lot better. : )
Friday, October 30, 2009
It's a dollar!
Ok, due to the fact that I'm 1) a poor college student/ recent grad, and 2) I am throwing two Halloween parties in the next two days, I have been to several Dollar Tree/99cent type stores in the past week. At one of them, they had a sign on the front window that said, "$1: it's a dollar," which I thought was a pretty hilarious sign. And then as I was walking around the store with Tanya, she would ask, "Do we need this?" and I would say, "It's a dollar!." I now understand the genius of that sign. : ) Also: $1 Halloween decorations rock my world. That's all for now.
Wednesday, October 21, 2009
Busy Sewing Bee
I am sooo desperately in need of a new post or two. Life has been very busy! On my to-do list today: make another plush corn dog, make two chicken broccoli casseroles, lead Youth Mass practice, have dinner at my sister's, have some carefree timelessness time with PC, and make it to bed by 11. Maybe I can do it tomorrow. I'll put it on tomorrow's to-do list. : )
I also want to make some coasters soon. I'm trying to fully realize my domestic abilities. I think hand-stitching plush corn dogs is a good step in that direction. Then I want to make some coasters, get back into a creative space that I'm familiar with before I try to tackle something new and exciting like knitting or crocheting or something awesome (and intimidating) like that. I'm also teaching myself how to cook! Katie Robinson, who up until Monday could make 2 dishes, is now making real food. Time to bust out all those cookbooks I got for graduation. I'm excited!
Alright, I'll try to check-in and actually update tomorrow.
I also want to make some coasters soon. I'm trying to fully realize my domestic abilities. I think hand-stitching plush corn dogs is a good step in that direction. Then I want to make some coasters, get back into a creative space that I'm familiar with before I try to tackle something new and exciting like knitting or crocheting or something awesome (and intimidating) like that. I'm also teaching myself how to cook! Katie Robinson, who up until Monday could make 2 dishes, is now making real food. Time to bust out all those cookbooks I got for graduation. I'm excited!
Alright, I'll try to check-in and actually update tomorrow.
Monday, September 14, 2009
Countdown
Two days till the table tilt test and I'm tremulous (sorry, there were a lot of t's in that sentence, couldn't resist the alliteration). But yeah, I'm nervous.
Friday, September 11, 2009
Heartbeats
Well, it took me a bit longer than I had anticipated, but I'm finally here to bring you guys up to speed on what's happening with my cardiologist.
Recap: about a month ago I went to my new cardiologist, Dr. Dhillon, after asking my pcp to refer me to a cardiologist because I had read about some heart/blood pressure conditions that I thought I might have. I went to Dr. Dhillon hoping to be set up with a table tilt test to test for neurally mediated hypotension, which is a type of orthostatic intolerance which causes blood pressure to drop significantly during standing, resulting in light-headedness and other symptoms.
So I went to Dr. Dhillon. Being 22 in a cardiologist's office is kind of...embarrassing? Or I just felt kind of silly. Every other patient was at least 50. When the physician's assistant was taking my bp and EKG (you know you're at a heart doctor's when instead of taking your temp they do an EKG), she was like, "How old are you!? You look like a baby!"; I think people my age are pretty rare in their office. I think because of my age, Dr. Dhillon was slightly skeptical of me, not to mention that I came in knowing pretty much everything he ended up telling me, but he was decently nice and was fine about setting up tests and things for me. He agreed that I likely have some sort of syncope/neosyncope (which means fainting/near-fainting), but we are still in the process of trying to determine exactly which condition I have under that umbrella. There are several conditions that create the same symptoms but have different causes. For example: neurally mediated hypotension (NMH) and postural tachycardic syndrome (POTS) are both types of orthostatic intolerance (which is a type of syncope in which symptoms are aggravated when standing). They both cause light-headedness, dizziness because they both result in getting too little blood to your brain after standing (your body can't properly respond to the change in gravity when you stand up). Both are the result of abnormal regulation, but NMH is the abnormal regulation of blood pressure while POTS is the abnormal regulation of heart rate. So table tilt test will help us figure out which thing is happening abnormally (more explanation to follow : p).
At my first appt with Dr. Dhillon, he scheduled me for an echocardiogram, which is an ultrasound of the heart. This just checks to make sure that the actual heart is functioning properly, to make sure that it is a problem with the regulation and not the mechanism. I think we also had to do it before a table tilt test to make sure that a table tilt wasn't going to kill me or something. So I had my echocardiogram a week after my first appt with Dr. Dhillon, and then had a follow-up with him a week after that. My echo was normal, as expected, so now I have been scheduled for a table tilt test next Wednesday.
Ok, so what is this table tilt test thing? Basically, here's what I think is going to happen: I'm going to lay on a table for 15-20 mins to establish a resting heart rate/blood pressure, and then they're going to strap me to the table, and raise it up to a 70 ° angle (so it's slightly less extreme than actual standing up), leave me like that for 30 mins and see what happens with my blood pressure and heart rate. POTS is diagnosed with an increase in heart rate of 30 beats per minute within the first ten minutes of being put upright, while NMH is defined as a drop in blood pressure of 25 mmHG within 30-40 mins, so this will be able to determine which of those things are happening. It is highly likely that I will pass out during this test (a lot of people have their first actual fainting episode during the test) because I can't go lie down. Normally, when I start feeling symptoms I go lie down so that I don't pass out. This test makes it so that you can't counteract what's happening with your circulatory so that they can actually see what it is. Make sense?
I'm actually pretty nervous about this. From what I've read, I'm supposed to feel like absolute death for 2-3 days afterwards, which believe it or not, I'm not really looking forward to. Also, the test isn't super reliable, and can result in false positives or false negatives, but it's the only way to be able to see what's happening (it's basically like triggering a seizure so you can brain map it, you know?). We have a family friend who's a nurse, and she said that the first table tilt test she was ever at, the girl flatlined for 13 seconds...good to know. She said that that's super uncommon, but still, it's not very comforting.
But, good news: after this test, regardless of what the results are (like, even if it doesn't show stuff) Dr. Dhillon is going to start me on medication for hypotension to see if it helps. I'm pretty excited about that because I think it's going to make a big difference, but I'm trying not to get too excited, just in case it doesn't.
Oh, and other good news, I was able to get health insurance, and in time that I didn't have to push these tests back or anything. Very exciting.
So be thinking of me on Wednesday the 16th between the hours of 12 and 2pm (my table tilt test) and I'll let you guys know how it goes!
Recap: about a month ago I went to my new cardiologist, Dr. Dhillon, after asking my pcp to refer me to a cardiologist because I had read about some heart/blood pressure conditions that I thought I might have. I went to Dr. Dhillon hoping to be set up with a table tilt test to test for neurally mediated hypotension, which is a type of orthostatic intolerance which causes blood pressure to drop significantly during standing, resulting in light-headedness and other symptoms.
So I went to Dr. Dhillon. Being 22 in a cardiologist's office is kind of...embarrassing? Or I just felt kind of silly. Every other patient was at least 50. When the physician's assistant was taking my bp and EKG (you know you're at a heart doctor's when instead of taking your temp they do an EKG), she was like, "How old are you!? You look like a baby!"; I think people my age are pretty rare in their office. I think because of my age, Dr. Dhillon was slightly skeptical of me, not to mention that I came in knowing pretty much everything he ended up telling me, but he was decently nice and was fine about setting up tests and things for me. He agreed that I likely have some sort of syncope/neosyncope (which means fainting/near-fainting), but we are still in the process of trying to determine exactly which condition I have under that umbrella. There are several conditions that create the same symptoms but have different causes. For example: neurally mediated hypotension (NMH) and postural tachycardic syndrome (POTS) are both types of orthostatic intolerance (which is a type of syncope in which symptoms are aggravated when standing). They both cause light-headedness, dizziness because they both result in getting too little blood to your brain after standing (your body can't properly respond to the change in gravity when you stand up). Both are the result of abnormal regulation, but NMH is the abnormal regulation of blood pressure while POTS is the abnormal regulation of heart rate. So table tilt test will help us figure out which thing is happening abnormally (more explanation to follow : p).
At my first appt with Dr. Dhillon, he scheduled me for an echocardiogram, which is an ultrasound of the heart. This just checks to make sure that the actual heart is functioning properly, to make sure that it is a problem with the regulation and not the mechanism. I think we also had to do it before a table tilt test to make sure that a table tilt wasn't going to kill me or something. So I had my echocardiogram a week after my first appt with Dr. Dhillon, and then had a follow-up with him a week after that. My echo was normal, as expected, so now I have been scheduled for a table tilt test next Wednesday.
Ok, so what is this table tilt test thing? Basically, here's what I think is going to happen: I'm going to lay on a table for 15-20 mins to establish a resting heart rate/blood pressure, and then they're going to strap me to the table, and raise it up to a 70 ° angle (so it's slightly less extreme than actual standing up), leave me like that for 30 mins and see what happens with my blood pressure and heart rate. POTS is diagnosed with an increase in heart rate of 30 beats per minute within the first ten minutes of being put upright, while NMH is defined as a drop in blood pressure of 25 mmHG within 30-40 mins, so this will be able to determine which of those things are happening. It is highly likely that I will pass out during this test (a lot of people have their first actual fainting episode during the test) because I can't go lie down. Normally, when I start feeling symptoms I go lie down so that I don't pass out. This test makes it so that you can't counteract what's happening with your circulatory so that they can actually see what it is. Make sense?
I'm actually pretty nervous about this. From what I've read, I'm supposed to feel like absolute death for 2-3 days afterwards, which believe it or not, I'm not really looking forward to. Also, the test isn't super reliable, and can result in false positives or false negatives, but it's the only way to be able to see what's happening (it's basically like triggering a seizure so you can brain map it, you know?). We have a family friend who's a nurse, and she said that the first table tilt test she was ever at, the girl flatlined for 13 seconds...good to know. She said that that's super uncommon, but still, it's not very comforting.
But, good news: after this test, regardless of what the results are (like, even if it doesn't show stuff) Dr. Dhillon is going to start me on medication for hypotension to see if it helps. I'm pretty excited about that because I think it's going to make a big difference, but I'm trying not to get too excited, just in case it doesn't.
Oh, and other good news, I was able to get health insurance, and in time that I didn't have to push these tests back or anything. Very exciting.
So be thinking of me on Wednesday the 16th between the hours of 12 and 2pm (my table tilt test) and I'll let you guys know how it goes!
Friday, August 14, 2009
Ok, this is really awesome.
So there's a CFIDS Association of America. And I'm a fan of theirs on facebook (you can be too! it's a good way to learn about CFS) and I get their monthly e-mail newsletter. As part of their newsletter, they let you know about recent scientific studies about CFS. And there are studies that are showing that it might be possible to actually do a blood test to diagnose for CFS! This would be HUGE for CFSians, because it would not only make it much easier to diagnose, but would add a lot of credibility to CFS in the medical community. So, that's some new exciting research. It will still take awhile to get the test totally developed, but it's really awesome to know that one could be coming. You can read the article here.
Now, as much as it's challenging and annoying that some of the medical community doesn't accept CFS as a real condition, for me it might come in handy for the moment. Because I'm not a full-time student right now, I can't be on my mom's insurance, so we're trying to get an individual plan for me. It's going to be hard to get an insurance company to accept me because of my CFS, but fortunately some of them don't seem to take it as a diagnosis, and so might not be too fussed about it. We'll see how that goes.
In about an hour I have an appointment with a cardiologist to hopefully set up an appointment to get tested for neurally mediated hypotension, which I mentioned last post. Hopefully we could do the test before September 1st, because that's when my insurance goes away for the time being. I'll update after my appointment and let you guys know what's up. I'm a little nervous/excited about my appointment. I'm just really hoping that it's not going to be a challenge to get this doctor to test me; I don't know how common NMH is, so I don't know if it's something where they would want to rule out other things first or whatever. Also, when I went to my doctor to get the referral to the cardiologist, she seemed thoroughly unconcerned with my hypothesis of NMH. She said, "Well, I don't usually consider low blood pressure a problem." Well, when I can't stand up for any period of time and have to lay down half the time after I eat because of said low blood pressure, then yes, I would consider that a problem, lady! But then again, we've learned not to really expect much from her. (I know you guys don't understand what NMH is, but don't worry, I'll write a full post about it later, once I've talked to the cardiologist and know a bit more myself.)
On a thoroughly unrelated note, my boyfriend is finally home after being gone for the last three months (yay!). We're hopefully going to go to City to get our books and parking passes today (new semester starts Monday), and maybe got out to dinner with my parents tonight. Sounds like a very lovely day. : ) My head is hurting something fierce at the moment, but I'm choosing to pretend that it's not.
Hope you're having a wonderful day, and God bless!
Now, as much as it's challenging and annoying that some of the medical community doesn't accept CFS as a real condition, for me it might come in handy for the moment. Because I'm not a full-time student right now, I can't be on my mom's insurance, so we're trying to get an individual plan for me. It's going to be hard to get an insurance company to accept me because of my CFS, but fortunately some of them don't seem to take it as a diagnosis, and so might not be too fussed about it. We'll see how that goes.
In about an hour I have an appointment with a cardiologist to hopefully set up an appointment to get tested for neurally mediated hypotension, which I mentioned last post. Hopefully we could do the test before September 1st, because that's when my insurance goes away for the time being. I'll update after my appointment and let you guys know what's up. I'm a little nervous/excited about my appointment. I'm just really hoping that it's not going to be a challenge to get this doctor to test me; I don't know how common NMH is, so I don't know if it's something where they would want to rule out other things first or whatever. Also, when I went to my doctor to get the referral to the cardiologist, she seemed thoroughly unconcerned with my hypothesis of NMH. She said, "Well, I don't usually consider low blood pressure a problem." Well, when I can't stand up for any period of time and have to lay down half the time after I eat because of said low blood pressure, then yes, I would consider that a problem, lady! But then again, we've learned not to really expect much from her. (I know you guys don't understand what NMH is, but don't worry, I'll write a full post about it later, once I've talked to the cardiologist and know a bit more myself.)
On a thoroughly unrelated note, my boyfriend is finally home after being gone for the last three months (yay!). We're hopefully going to go to City to get our books and parking passes today (new semester starts Monday), and maybe got out to dinner with my parents tonight. Sounds like a very lovely day. : ) My head is hurting something fierce at the moment, but I'm choosing to pretend that it's not.
Hope you're having a wonderful day, and God bless!
Wednesday, August 12, 2009
I'll start at the beginning
[To warn you, this is a very long post, though, personally, I do consider it a worthwhile read. I had to tell you this story first, to give context to anything else I might choose to say in the future.]
I've had a very challenging year.
Last September, I was diagnosed with Chronic Fatigue Syndrome (CFS or CFIDS-Chronic Fatigue Immune Dysfunction Syndrome). I don't think I had ever heard of CFS before last September, but I am definitely familiar with it now. Common symptoms of CFS include:
* Unexplained extreme fatigue
* Decreased ability to perform work or educational, social and personal activities due to fatigue
* Chronic or frequent sore throat
* Muscle pain
* Difficulty with concentration or short term memory
* Headaches unlike those previously experienced
* Joint pain unrelated to injury or trauma
* Unrefreshed sleep
* Tender lymph nodes
* Chronic low-grade fever
Two summers ago, I started working in a research lab on campus and last summer I was supposed to work full-time in order to fulfill the requirements for a grant I had received. A few weeks into the summer, I stopped being able to go in to the lab. I was dizzy, weak, had migraines, felt foggy, and was extremely tired no matter how much sleep I got. I was only capable of spending the day sitting on a couch or lying in my bed. I went to the doctor I was seeing at the time, even though I was already in the process of switching doctors, and he told me my blood pressure was really low so drink a lot of water and gatorade, and take Ibuprofen for the headaches. He seemed entirely unconcerned about the fatigue and brain fog, and I was not satisfied. I didn't have an appointment scheduled with my new doctor until a few months later so I emailed her and told her what was going on. She emailed back that I shouldn't have any flour, sugar or caffeine until I saw her, which was still a wait of a couple months. So, what should have been a summer of full-time work, turned into a summer of napping and sluggishness. The diet did help, the migraines got better, but I still couldn't do much. [And, side note, have you ever tried not to eat ANY sugar or flour? And caffeine is in more than you think it is. I made a very serious effort at this diet, but it was very difficult.] When I finally saw my new doctor, she told me that she suspected Addison's Disease, adrenal exhaustion condition, because of my low blood pressure. To check this, she needed to do an adrenal function test, which required me to spit in tubes 3 times on a particular day and mail them to some lab, and it would take about a month to get results back. She also did a series of blood tests to check thyroid function, Lyme disease, Epstein-Barr (mono), and several viral and bacterial infections. I waited, with no improvement, doing all of the research I could on Addison's disease (which was not very reassuring--Addison's, though treatable [not curable] is a serious and potentially life threatening condition and those with it must wear MedID bracelets at all times). She also gave me even further restrictions on my diet based on my blood type, citing that much of what I was eating was likely making things worse (namely corn). [But this new diet? PHEW! I seriously could eat almost nothing without very considerable effort. So not worth it.]
I finally got to see my doctor after she got all of my test results back some time in September. There are baskets of books and magazines in the appointment rooms of my doctor's office, and when I went in there was a book on Addison's on top on the basket, and I thought, "How appropriate!" Wrong. My doctor came in and told me that no, indeed, not only were my adrenal glands working, they were working at times too much and oddly. I did not have Addison's, but due to my months of fatigue and the fact that I tested positive for at least five of the bacterial or viral infections she had tested for, she diagnosed me with Chronic Fatigue Syndrome. She suggested that I start taking some herbal supplements that might help lessen my fatigue and strengthen my immune system, and to come back in 3 months, because that's how long it was likely to take to see results. Tanya, who was with me, asked her if I should still keep eating the way I had been, and she said, "Well, those things aren't good for anybody," and swiftly bade us good day.
Now, maybe I'm being dramatic, but here's what I think: when diagnosing someone with a lifelong, untreatable, and incurable condition which much of the medical field still considers psychosomatic, I would, if I were a doctor, possibly find it necessary to have more than a 5 minute conversation and then say, "See you in three months!" Maybe I would suggest readings that would be helpful to the patient in order for them to learn their about this condition, especially since it may not be something that the patient has ever heard of. I might refer them to a nutritionist who could help with the daunting task of an extremely strict diet. I might give them the numbers of some local support groups, or a website to checkout, or a specialist to see, or give them a hug or a friggin' teddy bear or SOMETHING!
However, my doctor apparently found none of these things necessary. So I went home kind of shell-shocked, ordered my supplements, searched the internet for whatever I could find, and set about the task of trying my best to be less tired.
By this point, school had resumed. I was still a full time student, but with a much lighter load than I would usually have had. As I've already said, I had to quit working in my lab at school. My junior year of college, I had been president of my college group at church (the Catholic Student Association), but at the end of the year, no one had run for the position (or any other position for that matter), so it looked like I would be president again. I agreed to do it again very reluctantly, mostly because I was afraid that the recently acquired unreliability of my body might not allow me to fulfill my responsibilities. I was trying to cut down on as many commitments as I could, trying to get my life down to a size that I could handle. It helped for sure: I was able to go to school most of the time and I did well enough in school, but it was not easy. I definitely missed a sizable number of classes.
Until midway through this past spring semester, I'm pretty sure I was in some sort of denial about my CFS. Not that I didn't think that I had it, but mostly that I really had no idea what having chronic fatigue syndrome meant. Possibly what I can compare that feeling to was my feeling when I was in the emergency room when I was 14 after having been bit in the face by my neighbor's dog. As we were waiting for the plastic surgeon, the E.R. doctor started talking to me about my scar. I can't even remember what she was saying—I vaguely remember my mom telling her that I had really great friends, so maybe she was trying to reassure me that my friends wouldn't mind my scar—but all I can remember thinking was: “Huh? What scar?!” I didn't have a scar. I had been looking at my face for nearly fifteen years, and I had no scar. What I couldn't understand was something that she took for granted as the next step: that I would have a scar, and that, being on my face, it would not be the easiest scar to live with. This was the scar she was talking about, the one she knew was going to be so much a part of my future that she could talk to me about it before I was even stitched up. But I really had no clue as to what on earth she was saying. But learn I did. After several months of having these new lines on my face, and the constant questions, and the keloid tissue, and the doctors, and the and the and the and the...I definitely knew I had a scar. [As a point of interest, I passed the 8 year mark two days ago—seems somewhat crazy that I can quantify how long it's been since I've had it, since now I can't remember what it was like not to have it. And it's strange to think that my boyfriend and best friend, as well as most of my friends here, have never known me without it. But it's also strange that there are still people around that have known me without it. Like there are two worlds, the before and the after, and that only a few people can cross that veil and it's all weird and complicated and I think to much and I digress. Ah-hem. Sorry. Anyways.]
And so it was with chronic fatigue syndrome. I couldn't really understand that I HAD chronic fatigue syndrome until time had had a chance to work it's magic on me. Over that summer, there were doctors and tests and new diets and prospects and hope for a treatment or a cure or a pill or a surgery or a test. But after my diagnosis, there was: simply time. When I went back to see my doctor after those first three months, she saw me again for about five minutes, just enough time to ask me if anything had improved and to send me on my way. When I first came in, she looked over my notes from last time, and then asked, “Would you like to try something new, and see if that helps?” I eagerly agreed, and then waited hopefully for her to tell me what this wonderful new medicine might be. After our round of questions, she said, “Okay, so I want you to try CorvalenM. That should be really helpful.” “Umm...actually, you told me to start taking that last time and I have been.” “Oh really? Hmm, guess I didn't write it down. Well, that's it then.” The shocked disappointment must have shown on my face, revealing that I had been expecting some sort of deus ex “pill,” because she then felt the need to give me this compassionate piece of advice: “It's chronic. Get used to it.” [Ugh—appalling.]
And while that's the most callous thing I think anyone has ever said to me, it is true. I had to come to terms with it, I needed to accept what I had and what that really meant, and I wasn't. (Though I absolutely don't excuse her for saying that; there are appropriate ways to get that message across, and that isn't one of them.) I still kept expecting my ill health to go away or get better or get easier. Or I expected that “getting used to it” meant “being able to deal with it,” in the same way that you might get used to working with an annoying manager or having to always wear long pants to work, even in the middle of summer; maybe it's inconvenient, but you just learn to integrate it into your routine. It took me a very very long time to understand that chronic fatigue was not going to change to accommodate me, but that I needed to accommodate it. My life had to change, I had to change, because the things that I was still expecting were not possible.
I graduated this past May, so of course during the past year I was trying to plan What's Next. I was planning to get my credential and become a high school biology teacher, and so what I wanted to do for this next year was to volunteer with JVC (Jesuit Volunteer Corps, kind of like Catholic domestic Peace Corps) to hopefully gain some teaching experience while serving the marginalized in our country. I applied, I interviewed, I went to Santa Clara for a second interview. And then I was turned down (I had been very narrow on the type of placement I wanted and because of the economy it was a very high applicant year—they didn't need me enough to submit to my demands). But no matter! I found another program, an AmeriCorps program, that was basically the same as JVC except ALL of the placements were teaching, so we would all be going through the same things together AND you could work on your master's during the program AND you got a stipend at the end of the year AND they had placements in DC, my favorite city in America, where I had always wanted to live. This was perfect! This was the window that had opened in response to JVC's door being closed.
And then my dad called me. If you know my dad at all, you'll know that my dad is a man of few words. He's a really an incredible guy—he's surprisingly funny (and he and I have surprisingly similar senses of humor), he's incredibly sweet, he can fix almost anything, he knows the answer to basically every question, and if he doesn't know if off the top of his head, he'll find out for you. But he just really doesn't talk that much. I talk to my mom pretty often and she usually covers the conversation for the both of them. Most of the time if my dad does call me, it's for things like, “Grandma's having us over for dinner on Saturday, are you free then?” So this day, when my dad called me to talk to me about this AmeriCorps program, I knew that this was an important conversation to him. My parents had been fine about me doing JVC because I had only applied to the Southwest region (basically meaning, California) so I would be close to home in case anything happened. But now I was talking about going to DC for a year and teaching full-time and taking master's classes, and my dad called to ask, “How are you going to do this?” Looking back on it now, it's fairly obvious: I couldn't. But then, it was, “I can make it work. It'll be ok.” All of my life, until that moment, I had been Katie Robinson: busy-girl extraordinaire. As a general rule, I could always tell you what I was doing any given day at least three months in advance. In high school, I was usually gone at least 13 hours a day, due to early classes, after school activities like choir and drama, A.P. study sessions, work, voice lessons, church, plus just general homework and social life type things. In college, I took as many units as would fit in my schedule, while still being active in clubs and work and whatever else, traveling to visit friends out of town whenever possible, always signing up for whatever needed doing [I found it amusing when someone recently called this particular phenomenon the “light-arm syndrome,” i.e. “Who can help me with this?” and if you always raise your hand, you have LAS!]. Of course, being this way wasn't easy and lead to many sleepless nights and mild breakdowns, but it all got done. Until that moment, I was capable of anything that I put my mind to. I was supremely able.
But after I got off the phone with my dad that evening, I realized that time was over. No, I was no longer capable of doing whatever. I had been waiting for my CFS to “wear off” or “lighten up,” like how you wait for weeks for the last dregs of a cold to clear up before you finally feel totally better. And it wasn't until that moment that I really understood that it was never going to go away. I had a new scar now, a scar on my ability, only it had been so much harder to realize because I couldn't always see it. Oh yes, some days it was painfully obvious that I was not fit for any kind of weekly-commitment, much less a year long one; some days it was easy to think that I may never be able to do anything ever again. But then there were those other days, the good days, the days that felt like normal ones, like old days, where I could be my old self, where I could have conquered the world! Imagine how much harder it would have been for me to come to terms with the scar on my face if some days it wasn't there when I looked in the mirror, if some days no one asked me what happened, if they didn't notice at all, or I didn't have to make sure I put sunscreen on it before I went outside, or if I didn't have to turn my spoon upside down everytime I ate pudding (of course eventually things ended up this way, but not for a long time). It would have been easy to pretend that it wasn't there at all. And until my dear sweet father called me, I was pretending that my CFS was some sort of sporadic mono that would clear up when it felt like it, leaving me to continue along with my life as planned.
But alas, it was not temperamental mono, and now I knew it. So I never actually applied to that AmeriCorps program. I called my parents back a few days later and told them I had decided not to do it. I was still entertaining the thought of possibly starting a credential program in the fall, but by the end of the semester (and the end of my Intro to Teaching class) I had also been able to admit to myself that at this point, there was no way I could realistically attempt to be a full-time teacher. True, teaching affords a lot of time off. But in very large chunks, not in the day-to-day sort of way that I need.
I can't even remember now what I was planning to do, try to find some sort of work I guess, at least substitute teaching for awhile until I could figure something else out. But the week before graduation, my mom reminded me of an earlier interest that I had had: what about becoming a sign language interpreter? We have a few family friends that interpret, and it's very flexible, and I really enjoyed sign language. So that's my new plan, careerwise: to go back to school and get a second bachelor's, in Deaf Studies with an emphasis in Interpreting, and become an interpreter. I retook ASL 1 this summer, and I'll keep taking ASL classes at city until state lets me come back (due to the state budget, it won't be until at least next fall). In the meantime, I still plan to sub—I'm in the process of getting set up with Clovis Unified right now—and providence has also been kind enough to grace me with a part-time position at my church as a high school youth group leader.
I'm writing this mainly because it's not really an easy thing to explain. This is mostly for those of you that I don't see regularly and don't know what's going on, though I'm sure it could help even those of you I see often. I recently went to a get-together of people that I graduated from high school with. Most of them are going off to med school or grad school, bursting with promise and expectation. And when asked what I was going to be doing, I generally gave some sort of lame, non-committal answer about, “Oh, I'm kind of going to wait and see,” and, in response, people tended to look disappointed or start looking away, as if already losing interest in my potential, as I had obviously failed to do anything with it. To a few was able to give a somewhat more accurate “I-have-chronic-fatigue-and-have-no-idea-where-my-life-is-headed” answer, but still, not very satisfactory.
Before I had really come to terms with my CFS [and I know in here I always call it CFS, but that's because it's just easier than CFIDS—don't forget that it is definitely much more complicated than fatigue], I didn't really tell people about it. Not that I was embarrassed or whatever, I just didn't think it mattered if people knew or not, because I thought it wouldn't have that much of an effect or that it would go away or that people wouldn't notice or something, I'm not sure. But now that I am fully aware that having CFS is definitely definite, I think it's really important for most people to know that I have it. It explains a lot. It often makes me late, if I can keep the commitment at all, and can make me seem disinterested when I am really just trying to stay awake/focus. It's not like I'm trying to hide behind my CFS or anything, it's just that it has it's rules, and if you don't know that I'm dancing to someone else's tune, you might find my actions at times inexplicable (for example: leaving church just before mass, even though I was obviously just preparing to cantor; spending all of a Wednesday night dinner sitting in a corner, leaning against the wall instead of sitting at a table and visiting with people; asking for rides to places I am more than capable of finding on my own; missing an entire week of a particular class or lab; saying no when asked to join you in something that I would normally have joined in on immediately).
But I am not unhappy, not in the slightest. I am extraordinarily loved by a slew of truly wonderful people. I have been blessed with work that I am capable of, so that I do not have to be a drain on the love of those people, or the government—for now. Through this I have, more than ever, felt the beautiful and loving hand of God weaving the tapestry before me. In the CFS world, I am an INCREDIBLY lucky person. I have been supported, not abandoned, by my friends and family. I even have a very close friend who went through something similar when she was my age and is still dealing with a similar condition, so I have had her example and experience to learn from (though, believe me, I am still learning). Thus far, I have met with very little of the suspicion that many sufferers do, that they are merely lazy or faking (though one particular friend was rather rude about my new career choice, finding it beneath me; personally I rather find refusing to work because I cannot do work within my previously chosen field much more beneath me than finding work I would actually be able to do, but some of us have much more limited views of value and success). Every once and awhile someone makes an offhanded comment about how lucky I am to have spent all day in bed, which I do find irritating at the time, but they are innocent comments made by good-willed people, not contemptuous jibes as they sometimes are to other sufferers. Though not always, I can still drive myself around most of the time, which many people with CFS cannot. I don't need a cane or a wheelchair to get around, like many people with CFS. What makes me particularly sad about most CFS sufferers is that they are full to the brim with a passive-aggressive rage. They have often been mocked, mistrusted, and mistreated as a result of their condition, and as a result tend to be rather prickly about it (which I discovered as I was looking for some sort of CFS awareness type shirt, and found most things to be along the lines of this: http://www.chronic-illness.org/blog/its-all-in-your-head). I was lucky enough to be diagnosed not only very quickly, but in a time when, even though doctors cannot entirely define or treat CFS, they are able to recognize that somehow a faulty endocrine system is involved. I am incredibly, incredibly blessed, and very much aware of the fact.
Which is not to say that it's easy to live with or easy to be happy about. It's not. I had a particularly rough day a few weeks ago when I read that the CDC compares the experience of having CFS to the last four months of having AIDS. Any activities—hanging out with friends, work, family time, cooking, laundry—tend to result in some sort of “payback” time, when I have to recoup far beyond whatever energy I expended. But life is going on, and it hasn't left me behind. Often I can effect how I feel by what choices I make, including knowing when a particular choice is going to make me feel much worse, and so saving it for a time when I would be able to recoup from it (such as travel, a late night with friends, eating a particular something).
And there are a few new things on the horizon. I have recently read about another condition called neurally mediated hypotension which I am fairly convinced that I have. I'm in the steps of getting tested for it now (I'll tell you about how they test for it later, it's a hoot), and if diagnosed with NMH, it's treatment could help tremendously with my ability to function day-to-day. I have also ended up in contact with an R.N. from Canada who I am planning to visit at her wellness centre in October. If you don't know anything about how CFS has to be treated, she sounds like a quack, but the truth is that while the world of traditional medicine can usually only prescribe antidepressants to CFS sufferers, a holistic approach is often able to improve CFS symptoms to some degree. We CFSians cannot live comfortably in the caffeinated, fast food, high stress world that we live in. Our bodies have lost the ability to cope properly with these things, and so this Canadian R.N. is helping to teach me how to take care of my body properly. While I'm sure there is someone closer who could help me, finding people who know anything about CFS is particularly challenging, and once you do, finding people who are also compassionate is, well if we take my doctor as an example, difficult. So through another stroke of blessed providence we have found Janet, and though I haven't met her, my parents adore her. So, I'm going to try her out, and while I am hopeful that she'll be able to help me, if she's not, I at least get to take a weeklong trip to the Canadian Rockies. I really don't see a downside to that. I'll keep you guys posted on the progress of that. For now, she has me started on some new supplements (I stopped taking the ones my doctor prescribed after the first round because, 1. they were really expensive, 2. they were really difficult to take according to the directions without going crazy, i.e. take this one two hours before you eat anything, take this one with food, take this one after you've done three somersaults, take this one when the moon is three-quarters full, etc., 3. one of them made my head feel very strange, and 4. they didn't really seem to be making any difference), but ANYWAYS, Janet has me on some new supplements to help balance my diet and body chemistry and such. I just started them yesterday, so I don't really have much news to report on that, except for one I have to take 12 of a day, and I find that a little ridiculous.
I think that's about the end of the story for now. There's a lot more to it all, but I'll save it for another time. PLEASE don't be shy about commenting or asking questions—if you have something you'd like to say, but are unsure if you should, consider how long it took me to write this dang post, and give me the benefit of knowing that you actually had something to say/ask about it. : )
I hope that you all are doing well, and would be happy to know what's up with you. And for now, simply: God bless.
I've had a very challenging year.
Last September, I was diagnosed with Chronic Fatigue Syndrome (CFS or CFIDS-Chronic Fatigue Immune Dysfunction Syndrome). I don't think I had ever heard of CFS before last September, but I am definitely familiar with it now. Common symptoms of CFS include:
* Unexplained extreme fatigue
* Decreased ability to perform work or educational, social and personal activities due to fatigue
* Chronic or frequent sore throat
* Muscle pain
* Difficulty with concentration or short term memory
* Headaches unlike those previously experienced
* Joint pain unrelated to injury or trauma
* Unrefreshed sleep
* Tender lymph nodes
* Chronic low-grade fever
____________________________________________________
Two summers ago, I started working in a research lab on campus and last summer I was supposed to work full-time in order to fulfill the requirements for a grant I had received. A few weeks into the summer, I stopped being able to go in to the lab. I was dizzy, weak, had migraines, felt foggy, and was extremely tired no matter how much sleep I got. I was only capable of spending the day sitting on a couch or lying in my bed. I went to the doctor I was seeing at the time, even though I was already in the process of switching doctors, and he told me my blood pressure was really low so drink a lot of water and gatorade, and take Ibuprofen for the headaches. He seemed entirely unconcerned about the fatigue and brain fog, and I was not satisfied. I didn't have an appointment scheduled with my new doctor until a few months later so I emailed her and told her what was going on. She emailed back that I shouldn't have any flour, sugar or caffeine until I saw her, which was still a wait of a couple months. So, what should have been a summer of full-time work, turned into a summer of napping and sluggishness. The diet did help, the migraines got better, but I still couldn't do much. [And, side note, have you ever tried not to eat ANY sugar or flour? And caffeine is in more than you think it is. I made a very serious effort at this diet, but it was very difficult.] When I finally saw my new doctor, she told me that she suspected Addison's Disease, adrenal exhaustion condition, because of my low blood pressure. To check this, she needed to do an adrenal function test, which required me to spit in tubes 3 times on a particular day and mail them to some lab, and it would take about a month to get results back. She also did a series of blood tests to check thyroid function, Lyme disease, Epstein-Barr (mono), and several viral and bacterial infections. I waited, with no improvement, doing all of the research I could on Addison's disease (which was not very reassuring--Addison's, though treatable [not curable] is a serious and potentially life threatening condition and those with it must wear MedID bracelets at all times). She also gave me even further restrictions on my diet based on my blood type, citing that much of what I was eating was likely making things worse (namely corn). [But this new diet? PHEW! I seriously could eat almost nothing without very considerable effort. So not worth it.]
I finally got to see my doctor after she got all of my test results back some time in September. There are baskets of books and magazines in the appointment rooms of my doctor's office, and when I went in there was a book on Addison's on top on the basket, and I thought, "How appropriate!" Wrong. My doctor came in and told me that no, indeed, not only were my adrenal glands working, they were working at times too much and oddly. I did not have Addison's, but due to my months of fatigue and the fact that I tested positive for at least five of the bacterial or viral infections she had tested for, she diagnosed me with Chronic Fatigue Syndrome. She suggested that I start taking some herbal supplements that might help lessen my fatigue and strengthen my immune system, and to come back in 3 months, because that's how long it was likely to take to see results. Tanya, who was with me, asked her if I should still keep eating the way I had been, and she said, "Well, those things aren't good for anybody," and swiftly bade us good day.
Now, maybe I'm being dramatic, but here's what I think: when diagnosing someone with a lifelong, untreatable, and incurable condition which much of the medical field still considers psychosomatic, I would, if I were a doctor, possibly find it necessary to have more than a 5 minute conversation and then say, "See you in three months!" Maybe I would suggest readings that would be helpful to the patient in order for them to learn their about this condition, especially since it may not be something that the patient has ever heard of. I might refer them to a nutritionist who could help with the daunting task of an extremely strict diet. I might give them the numbers of some local support groups, or a website to checkout, or a specialist to see, or give them a hug or a friggin' teddy bear or SOMETHING!
However, my doctor apparently found none of these things necessary. So I went home kind of shell-shocked, ordered my supplements, searched the internet for whatever I could find, and set about the task of trying my best to be less tired.
By this point, school had resumed. I was still a full time student, but with a much lighter load than I would usually have had. As I've already said, I had to quit working in my lab at school. My junior year of college, I had been president of my college group at church (the Catholic Student Association), but at the end of the year, no one had run for the position (or any other position for that matter), so it looked like I would be president again. I agreed to do it again very reluctantly, mostly because I was afraid that the recently acquired unreliability of my body might not allow me to fulfill my responsibilities. I was trying to cut down on as many commitments as I could, trying to get my life down to a size that I could handle. It helped for sure: I was able to go to school most of the time and I did well enough in school, but it was not easy. I definitely missed a sizable number of classes.
Until midway through this past spring semester, I'm pretty sure I was in some sort of denial about my CFS. Not that I didn't think that I had it, but mostly that I really had no idea what having chronic fatigue syndrome meant. Possibly what I can compare that feeling to was my feeling when I was in the emergency room when I was 14 after having been bit in the face by my neighbor's dog. As we were waiting for the plastic surgeon, the E.R. doctor started talking to me about my scar. I can't even remember what she was saying—I vaguely remember my mom telling her that I had really great friends, so maybe she was trying to reassure me that my friends wouldn't mind my scar—but all I can remember thinking was: “Huh? What scar?!” I didn't have a scar. I had been looking at my face for nearly fifteen years, and I had no scar. What I couldn't understand was something that she took for granted as the next step: that I would have a scar, and that, being on my face, it would not be the easiest scar to live with. This was the scar she was talking about, the one she knew was going to be so much a part of my future that she could talk to me about it before I was even stitched up. But I really had no clue as to what on earth she was saying. But learn I did. After several months of having these new lines on my face, and the constant questions, and the keloid tissue, and the doctors, and the and the and the and the...I definitely knew I had a scar. [As a point of interest, I passed the 8 year mark two days ago—seems somewhat crazy that I can quantify how long it's been since I've had it, since now I can't remember what it was like not to have it. And it's strange to think that my boyfriend and best friend, as well as most of my friends here, have never known me without it. But it's also strange that there are still people around that have known me without it. Like there are two worlds, the before and the after, and that only a few people can cross that veil and it's all weird and complicated and I think to much and I digress. Ah-hem. Sorry. Anyways.]
And so it was with chronic fatigue syndrome. I couldn't really understand that I HAD chronic fatigue syndrome until time had had a chance to work it's magic on me. Over that summer, there were doctors and tests and new diets and prospects and hope for a treatment or a cure or a pill or a surgery or a test. But after my diagnosis, there was: simply time. When I went back to see my doctor after those first three months, she saw me again for about five minutes, just enough time to ask me if anything had improved and to send me on my way. When I first came in, she looked over my notes from last time, and then asked, “Would you like to try something new, and see if that helps?” I eagerly agreed, and then waited hopefully for her to tell me what this wonderful new medicine might be. After our round of questions, she said, “Okay, so I want you to try CorvalenM. That should be really helpful.” “Umm...actually, you told me to start taking that last time and I have been.” “Oh really? Hmm, guess I didn't write it down. Well, that's it then.” The shocked disappointment must have shown on my face, revealing that I had been expecting some sort of deus ex “pill,” because she then felt the need to give me this compassionate piece of advice: “It's chronic. Get used to it.” [Ugh—appalling.]
And while that's the most callous thing I think anyone has ever said to me, it is true. I had to come to terms with it, I needed to accept what I had and what that really meant, and I wasn't. (Though I absolutely don't excuse her for saying that; there are appropriate ways to get that message across, and that isn't one of them.) I still kept expecting my ill health to go away or get better or get easier. Or I expected that “getting used to it” meant “being able to deal with it,” in the same way that you might get used to working with an annoying manager or having to always wear long pants to work, even in the middle of summer; maybe it's inconvenient, but you just learn to integrate it into your routine. It took me a very very long time to understand that chronic fatigue was not going to change to accommodate me, but that I needed to accommodate it. My life had to change, I had to change, because the things that I was still expecting were not possible.
I graduated this past May, so of course during the past year I was trying to plan What's Next. I was planning to get my credential and become a high school biology teacher, and so what I wanted to do for this next year was to volunteer with JVC (Jesuit Volunteer Corps, kind of like Catholic domestic Peace Corps) to hopefully gain some teaching experience while serving the marginalized in our country. I applied, I interviewed, I went to Santa Clara for a second interview. And then I was turned down (I had been very narrow on the type of placement I wanted and because of the economy it was a very high applicant year—they didn't need me enough to submit to my demands). But no matter! I found another program, an AmeriCorps program, that was basically the same as JVC except ALL of the placements were teaching, so we would all be going through the same things together AND you could work on your master's during the program AND you got a stipend at the end of the year AND they had placements in DC, my favorite city in America, where I had always wanted to live. This was perfect! This was the window that had opened in response to JVC's door being closed.
And then my dad called me. If you know my dad at all, you'll know that my dad is a man of few words. He's a really an incredible guy—he's surprisingly funny (and he and I have surprisingly similar senses of humor), he's incredibly sweet, he can fix almost anything, he knows the answer to basically every question, and if he doesn't know if off the top of his head, he'll find out for you. But he just really doesn't talk that much. I talk to my mom pretty often and she usually covers the conversation for the both of them. Most of the time if my dad does call me, it's for things like, “Grandma's having us over for dinner on Saturday, are you free then?” So this day, when my dad called me to talk to me about this AmeriCorps program, I knew that this was an important conversation to him. My parents had been fine about me doing JVC because I had only applied to the Southwest region (basically meaning, California) so I would be close to home in case anything happened. But now I was talking about going to DC for a year and teaching full-time and taking master's classes, and my dad called to ask, “How are you going to do this?” Looking back on it now, it's fairly obvious: I couldn't. But then, it was, “I can make it work. It'll be ok.” All of my life, until that moment, I had been Katie Robinson: busy-girl extraordinaire. As a general rule, I could always tell you what I was doing any given day at least three months in advance. In high school, I was usually gone at least 13 hours a day, due to early classes, after school activities like choir and drama, A.P. study sessions, work, voice lessons, church, plus just general homework and social life type things. In college, I took as many units as would fit in my schedule, while still being active in clubs and work and whatever else, traveling to visit friends out of town whenever possible, always signing up for whatever needed doing [I found it amusing when someone recently called this particular phenomenon the “light-arm syndrome,” i.e. “Who can help me with this?” and if you always raise your hand, you have LAS!]. Of course, being this way wasn't easy and lead to many sleepless nights and mild breakdowns, but it all got done. Until that moment, I was capable of anything that I put my mind to. I was supremely able.
But after I got off the phone with my dad that evening, I realized that time was over. No, I was no longer capable of doing whatever. I had been waiting for my CFS to “wear off” or “lighten up,” like how you wait for weeks for the last dregs of a cold to clear up before you finally feel totally better. And it wasn't until that moment that I really understood that it was never going to go away. I had a new scar now, a scar on my ability, only it had been so much harder to realize because I couldn't always see it. Oh yes, some days it was painfully obvious that I was not fit for any kind of weekly-commitment, much less a year long one; some days it was easy to think that I may never be able to do anything ever again. But then there were those other days, the good days, the days that felt like normal ones, like old days, where I could be my old self, where I could have conquered the world! Imagine how much harder it would have been for me to come to terms with the scar on my face if some days it wasn't there when I looked in the mirror, if some days no one asked me what happened, if they didn't notice at all, or I didn't have to make sure I put sunscreen on it before I went outside, or if I didn't have to turn my spoon upside down everytime I ate pudding (of course eventually things ended up this way, but not for a long time). It would have been easy to pretend that it wasn't there at all. And until my dear sweet father called me, I was pretending that my CFS was some sort of sporadic mono that would clear up when it felt like it, leaving me to continue along with my life as planned.
But alas, it was not temperamental mono, and now I knew it. So I never actually applied to that AmeriCorps program. I called my parents back a few days later and told them I had decided not to do it. I was still entertaining the thought of possibly starting a credential program in the fall, but by the end of the semester (and the end of my Intro to Teaching class) I had also been able to admit to myself that at this point, there was no way I could realistically attempt to be a full-time teacher. True, teaching affords a lot of time off. But in very large chunks, not in the day-to-day sort of way that I need.
I can't even remember now what I was planning to do, try to find some sort of work I guess, at least substitute teaching for awhile until I could figure something else out. But the week before graduation, my mom reminded me of an earlier interest that I had had: what about becoming a sign language interpreter? We have a few family friends that interpret, and it's very flexible, and I really enjoyed sign language. So that's my new plan, careerwise: to go back to school and get a second bachelor's, in Deaf Studies with an emphasis in Interpreting, and become an interpreter. I retook ASL 1 this summer, and I'll keep taking ASL classes at city until state lets me come back (due to the state budget, it won't be until at least next fall). In the meantime, I still plan to sub—I'm in the process of getting set up with Clovis Unified right now—and providence has also been kind enough to grace me with a part-time position at my church as a high school youth group leader.
I'm writing this mainly because it's not really an easy thing to explain. This is mostly for those of you that I don't see regularly and don't know what's going on, though I'm sure it could help even those of you I see often. I recently went to a get-together of people that I graduated from high school with. Most of them are going off to med school or grad school, bursting with promise and expectation. And when asked what I was going to be doing, I generally gave some sort of lame, non-committal answer about, “Oh, I'm kind of going to wait and see,” and, in response, people tended to look disappointed or start looking away, as if already losing interest in my potential, as I had obviously failed to do anything with it. To a few was able to give a somewhat more accurate “I-have-chronic-fatigue-and-have-no-idea-where-my-life-is-headed” answer, but still, not very satisfactory.
Before I had really come to terms with my CFS [and I know in here I always call it CFS, but that's because it's just easier than CFIDS—don't forget that it is definitely much more complicated than fatigue], I didn't really tell people about it. Not that I was embarrassed or whatever, I just didn't think it mattered if people knew or not, because I thought it wouldn't have that much of an effect or that it would go away or that people wouldn't notice or something, I'm not sure. But now that I am fully aware that having CFS is definitely definite, I think it's really important for most people to know that I have it. It explains a lot. It often makes me late, if I can keep the commitment at all, and can make me seem disinterested when I am really just trying to stay awake/focus. It's not like I'm trying to hide behind my CFS or anything, it's just that it has it's rules, and if you don't know that I'm dancing to someone else's tune, you might find my actions at times inexplicable (for example: leaving church just before mass, even though I was obviously just preparing to cantor; spending all of a Wednesday night dinner sitting in a corner, leaning against the wall instead of sitting at a table and visiting with people; asking for rides to places I am more than capable of finding on my own; missing an entire week of a particular class or lab; saying no when asked to join you in something that I would normally have joined in on immediately).
But I am not unhappy, not in the slightest. I am extraordinarily loved by a slew of truly wonderful people. I have been blessed with work that I am capable of, so that I do not have to be a drain on the love of those people, or the government—for now. Through this I have, more than ever, felt the beautiful and loving hand of God weaving the tapestry before me. In the CFS world, I am an INCREDIBLY lucky person. I have been supported, not abandoned, by my friends and family. I even have a very close friend who went through something similar when she was my age and is still dealing with a similar condition, so I have had her example and experience to learn from (though, believe me, I am still learning). Thus far, I have met with very little of the suspicion that many sufferers do, that they are merely lazy or faking (though one particular friend was rather rude about my new career choice, finding it beneath me; personally I rather find refusing to work because I cannot do work within my previously chosen field much more beneath me than finding work I would actually be able to do, but some of us have much more limited views of value and success). Every once and awhile someone makes an offhanded comment about how lucky I am to have spent all day in bed, which I do find irritating at the time, but they are innocent comments made by good-willed people, not contemptuous jibes as they sometimes are to other sufferers. Though not always, I can still drive myself around most of the time, which many people with CFS cannot. I don't need a cane or a wheelchair to get around, like many people with CFS. What makes me particularly sad about most CFS sufferers is that they are full to the brim with a passive-aggressive rage. They have often been mocked, mistrusted, and mistreated as a result of their condition, and as a result tend to be rather prickly about it (which I discovered as I was looking for some sort of CFS awareness type shirt, and found most things to be along the lines of this: http://www.chronic-illness.org/blog/its-all-in-your-head). I was lucky enough to be diagnosed not only very quickly, but in a time when, even though doctors cannot entirely define or treat CFS, they are able to recognize that somehow a faulty endocrine system is involved. I am incredibly, incredibly blessed, and very much aware of the fact.
Which is not to say that it's easy to live with or easy to be happy about. It's not. I had a particularly rough day a few weeks ago when I read that the CDC compares the experience of having CFS to the last four months of having AIDS. Any activities—hanging out with friends, work, family time, cooking, laundry—tend to result in some sort of “payback” time, when I have to recoup far beyond whatever energy I expended. But life is going on, and it hasn't left me behind. Often I can effect how I feel by what choices I make, including knowing when a particular choice is going to make me feel much worse, and so saving it for a time when I would be able to recoup from it (such as travel, a late night with friends, eating a particular something).
And there are a few new things on the horizon. I have recently read about another condition called neurally mediated hypotension which I am fairly convinced that I have. I'm in the steps of getting tested for it now (I'll tell you about how they test for it later, it's a hoot), and if diagnosed with NMH, it's treatment could help tremendously with my ability to function day-to-day. I have also ended up in contact with an R.N. from Canada who I am planning to visit at her wellness centre in October. If you don't know anything about how CFS has to be treated, she sounds like a quack, but the truth is that while the world of traditional medicine can usually only prescribe antidepressants to CFS sufferers, a holistic approach is often able to improve CFS symptoms to some degree. We CFSians cannot live comfortably in the caffeinated, fast food, high stress world that we live in. Our bodies have lost the ability to cope properly with these things, and so this Canadian R.N. is helping to teach me how to take care of my body properly. While I'm sure there is someone closer who could help me, finding people who know anything about CFS is particularly challenging, and once you do, finding people who are also compassionate is, well if we take my doctor as an example, difficult. So through another stroke of blessed providence we have found Janet, and though I haven't met her, my parents adore her. So, I'm going to try her out, and while I am hopeful that she'll be able to help me, if she's not, I at least get to take a weeklong trip to the Canadian Rockies. I really don't see a downside to that. I'll keep you guys posted on the progress of that. For now, she has me started on some new supplements (I stopped taking the ones my doctor prescribed after the first round because, 1. they were really expensive, 2. they were really difficult to take according to the directions without going crazy, i.e. take this one two hours before you eat anything, take this one with food, take this one after you've done three somersaults, take this one when the moon is three-quarters full, etc., 3. one of them made my head feel very strange, and 4. they didn't really seem to be making any difference), but ANYWAYS, Janet has me on some new supplements to help balance my diet and body chemistry and such. I just started them yesterday, so I don't really have much news to report on that, except for one I have to take 12 of a day, and I find that a little ridiculous.
I think that's about the end of the story for now. There's a lot more to it all, but I'll save it for another time. PLEASE don't be shy about commenting or asking questions—if you have something you'd like to say, but are unsure if you should, consider how long it took me to write this dang post, and give me the benefit of knowing that you actually had something to say/ask about it. : )
I hope that you all are doing well, and would be happy to know what's up with you. And for now, simply: God bless.
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