I swear to god ... I don't know why I bother with doctor's appointments, really. Every time I leave with a plan, or a set of actions that I think are coming next, and then the test results come in and... nope! Let's do something completely different.
Talked to Zack today... apparently my Holter monitor did not go well. I thought I did super well - I did r e l a x i n g things that day so as not to screw with the bp too much - I rocked the new baby for hours! I... had tea and cookies and chats. I also apparently had multiple "concerning episodes". That "did not match up with your reported activities." Well... duh.
But... what's 'concerning', exactly, Zach? "Oh, well you threw a lot of PVCs - 275 in less than a couple of hours" Now, you may not know it, but PVCs in and of themselves aren't that huge of a deal, always - most everybody has some irregular heartbeat type things every now and then! (I did not know that ~ did you?) But.."that's kind of a lot of them, especially if you weren't ... exercising or something." Insert loooong hilarious laugh at the idea that I could be exercising, and then, take a moment to think about what could happen if I tried to exercise, which is what I have been telling people for years: My heart feels like it will literally explode, because that is how it feels when I try to stand up, or sit down, or move at all. Except - Hey, look at this; these number say that if rocking a baby and drinking (decaffeinated, btw) tea is causing your heart to race and you to have palpitations, probably exercising would not be wise right now.
Color me shocked.
So I have to go get that looked at 'more in depth', which he did not explain - Zach is very good at saying things like that and then leaving it to his nurse to call me three days later with an appointment booked and I'll be like "but... what's this for?" and she'll say "Didn't he tell you he wanted you to see the XYZologist?" "No, no he did not."
PLUS, in other awesome (read: unawesome) news, my Rheumatoid "pattern" has "completely reversed itself." Literally, from one blood test to the next - something about which proteins are elevated, the big ones or the little ones, blah blah something I don't know... But what he says next is "So you know how Dr. House is always saying it's not Lupus?"
"And you've always told me it's not Lupus?"
"Right; It might be Lupus."
"Or..."
"Probably, more like lupus AND you know, whatever else is already wrong with you"
"Zack I do not like these answers."
"Well, it could also be Rheumatoid Arthritis, because that titer or panel" (honestly, at this point all my notes are just arrows and question marks) "is high as well."
"Zack, how does that sound better?"
"No, it doesn't, but... you should definitely see an infectious Rheumatologist."
"Why are there even such things as infectious rheumatologists?"
"Because of people like you."
(And I swear I can hear him smiling, which, even though I love him, makes me kind of want to kill him.)
"So... which of these should I be the most worried about right now?" I ask him, before he can scurry off to another patient or phone call or the fifty million things he can seem to do at one time.
"Let's just say that if the rheumys can't see you in the next 2 weeks, call me back and I'll try to convince them otherwise."
He talks a little bit more about drugs and anemia (I need to take iron, and that might be contributing to the POTS, which could be adding to the stupid PVCs thing) and then gave me doctors to call and blah blah blah. BUT we never even talked about my thyroid which was the reason I went to the goddamn appointment in the first place.
So now I'm going to have to call him back and ask him about that, too. Only I don't even want to know, at this point. Just sent me the test results with a big SNAFU stamp across the top (Situation Normal, All Fucked Up) - I'll be happy with that.
I do not understand bodies. Or doctors. Or life.
Showing posts with label POTS. Show all posts
Showing posts with label POTS. Show all posts
Wednesday, November 20, 2013
Monday, November 15, 2010
"The cure for anything is salt water: sweat, tears or the sea"*
Day 15: Something/one you couldn't live without because you've tried living without it.
If you don't know me, this is going to sound ... odd, but my answer is salt. And I'm not just talking about "biologically, sodium is a requirement for blah blah blah..." I'm talking about, I am legitimately hooked on salt.
Back when I first got sick, I lost my appetite. It happened suddenly, just overnight: Flip: Food is not appealing anymore. And so, I stopped eating. I had some very large rows with my parents about this, at the time, turning the dinner table into yet another place where I didn't want to be because nobody understood me. (Please also remember that I was 15-16, and that did not help things.) After a while, and a lot of weight lost, I woke up from a nap one day suddenly craving salt. Not food, not salty food, just SALT. I had to have it, as much as possible, as quickly as possible.
Since my mother quickly ix-nayed my pouring entire piles of salt in my hand and licking it off (even though I did it when she wasn't looking), she started stockpiling salty foods, in an effort to get me to eat something. At first, I just kept licking the salt off of things like Saltines and Tostitos, but eventually, I would up eating them too. And although my appetite never fully returned, I started to be able to stomach foods and meals again.
But the salt craving never went away. It was so bad that first Christmas that my brother bought me one of these for Christmas:
Yeah, that's a brick of salt. He found it at an animal supply store, and that's where I found this picture, too. I guess you use it for horses. It is literally a brick made of salt.
And it was supposed to be a joke.
But if you think I didn't chip off little cubes of salt to stick in my pocket and pop in my mouth whenever I wanted them, then you haven't been paying attention to this post at all.
Waaay back, probably about 4 years into this ridiculousness, a doctor thought that my salt cravings would prove to be the answer to all my problems: I obviously had whatever disease of the week she was studying that had salt cravings as a symptom. (I think, and I wasn't paying much attention, but I think it had to do with Cortisol? or cortisone, or something like that.) Anyways, it turned out not to be the problem that I had, and that doctor dropped me like a hot potato.
Since then, the general consensus among the doctors is that salt is good for me! Fluid retention is important in orthostatic intolerance, and your body is trying to make up for what you're not getting naturally! It'll help raise your blood pressure! So, I stay on the salt.
But here at Grandmother's house, with her post stroke low-sodium diet? I am sneaking it like it's crack. Hiding actual-salt Saltines in my room, and putting the salt shaker behind my glass at dinner. I have tried going without it, because I feel SO GUILTY when Grandmother looks up from her plate to see me adding more salt to my mashed potatoes (who can eat salt-less mashed potatoes????), but it just does. not. work. for. me. (Mum says my currently unexplained hives could be a symptom of sodium withdrawal, but that's just because she thinks she's funny.)
So that's that: Nothing heavy, just salt. Now, I would pay you a pretty sum if you could manage to sneak some Pringles in here....
*Isak Dinesen
-------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
If you don't know me, this is going to sound ... odd, but my answer is salt. And I'm not just talking about "biologically, sodium is a requirement for blah blah blah..." I'm talking about, I am legitimately hooked on salt.
Back when I first got sick, I lost my appetite. It happened suddenly, just overnight: Flip: Food is not appealing anymore. And so, I stopped eating. I had some very large rows with my parents about this, at the time, turning the dinner table into yet another place where I didn't want to be because nobody understood me. (Please also remember that I was 15-16, and that did not help things.) After a while, and a lot of weight lost, I woke up from a nap one day suddenly craving salt. Not food, not salty food, just SALT. I had to have it, as much as possible, as quickly as possible.
Since my mother quickly ix-nayed my pouring entire piles of salt in my hand and licking it off (even though I did it when she wasn't looking), she started stockpiling salty foods, in an effort to get me to eat something. At first, I just kept licking the salt off of things like Saltines and Tostitos, but eventually, I would up eating them too. And although my appetite never fully returned, I started to be able to stomach foods and meals again.
But the salt craving never went away. It was so bad that first Christmas that my brother bought me one of these for Christmas:
Yeah, that's a brick of salt. He found it at an animal supply store, and that's where I found this picture, too. I guess you use it for horses. It is literally a brick made of salt.
And it was supposed to be a joke.
But if you think I didn't chip off little cubes of salt to stick in my pocket and pop in my mouth whenever I wanted them, then you haven't been paying attention to this post at all.
Waaay back, probably about 4 years into this ridiculousness, a doctor thought that my salt cravings would prove to be the answer to all my problems: I obviously had whatever disease of the week she was studying that had salt cravings as a symptom. (I think, and I wasn't paying much attention, but I think it had to do with Cortisol? or cortisone, or something like that.) Anyways, it turned out not to be the problem that I had, and that doctor dropped me like a hot potato.
Since then, the general consensus among the doctors is that salt is good for me! Fluid retention is important in orthostatic intolerance, and your body is trying to make up for what you're not getting naturally! It'll help raise your blood pressure! So, I stay on the salt.
But here at Grandmother's house, with her post stroke low-sodium diet? I am sneaking it like it's crack. Hiding actual-salt Saltines in my room, and putting the salt shaker behind my glass at dinner. I have tried going without it, because I feel SO GUILTY when Grandmother looks up from her plate to see me adding more salt to my mashed potatoes (who can eat salt-less mashed potatoes????), but it just does. not. work. for. me. (Mum says my currently unexplained hives could be a symptom of sodium withdrawal, but that's just because she thinks she's funny.)
So that's that: Nothing heavy, just salt. Now, I would pay you a pretty sum if you could manage to sneak some Pringles in here....
*Isak Dinesen
-------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Saturday, September 18, 2010
"If I had my way I'd make health catching instead of disease."*
First off, I want to thank all of you for your very kind thoughts about my grandmother. She is much improved, and has moved from the hospital to a local (ish) rehab, where she's getting some much needed help with her leg strength and balance. Aside from being a bit more wobbly (which was an issue prior to her fall), there seem to be very few ill lasting effects. Knock wood, throw salt, praise the god/goddess/ancient deity/flying spaghetti monster of your choice. I do really appreciate the support I've received here, and can't tell you how much. We're working through it. Slow and steady.
One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -
So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?
It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.
The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.
But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.
And that the weaknesses we've got in common don't matter near as much as the strengths we share.
*Robert Ingersoll
One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -
- Because she has an atrial fibrillation, her heart rate and pulse can drop dramatically, and she's been on multiple blood pressure meds to help control this. For me, that's the POTS, and the drugs she's been on? I've been on the majority of them too.
- She has weakness and swelling in her legs, and they're not really sure why. Ditto here.
- She has freezing cold feet - sometimes requiring three or four pairs of socks. I also have this problem (although it's not as constant as hers, and is complicated by the burning on the bottom of my feet sensation I get too), and most days, if you put your hand on my upper thigh and slowly move it down, you can feel about a 10 degree temperature drop by the time you get to my icy cold toes.
- She has an unexplained (but attributed to her heart condition) dizziness and vertigo; I have an unexplained (but attributed to my POTS) dizziness and vertigo.
- Neither one of us can stand, unaided, and straight. We invariably begin to tip after just a few seconds.
- She's passed out more than once - her history of fainting spells stretches back to when she was a teenager. Want to take a guess when mine started?
- She's weak and she's tired a lot, and they like to say things like "Well, you're ninety three, what do you expect?" when she complains about it. I'm tired a lot, and unreasonably weak, and they like to say things like "Well, you've got chronic health conditions, what do you expect?"
- We've both learned to sit at the edge of the bed, feet dangling for a minute, before we dare to get up. (And by 'learned', I mean to say we both remember it when we feel like it, and sometimes screw the consequences when we don't.)
- We both have extremely sensitive skin - her back has been as hot as coals ever since she was admitted to the ER, due to some combination of hospital/rehab soap and laundry detergent. They gave her some medicine to put on it, which I've been helping her with, but the rash I got on my hands spread like fire all the way up one of my arms, so I had to start using gloves to put it on.
- Neither one of us likes to be in the position of asking for help, and get frustrated by people telling us what/how we should be doing things. (Oh wait: this is unrelated to our medical conditions unless "stubborn as a jack ass" is now listed as a medical condition.)
- Same goes for physical therapy and occupational therapy. (See above point, re: jackassery.)
So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?
It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.
The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.
But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.
And that the weaknesses we've got in common don't matter near as much as the strengths we share.
*Robert Ingersoll
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