Wow. I don't know about you, but DAMN that felt good.
To just get it out - vent - and complain the shit out of what I need to, want to complain about - this stupid POTS crap - and NOT have to add a SMILE at the end.
Happens every time. I could be talking to a friend, family member, even my doctor for crying out loud, and I feel the need to be like, "hey, it's okay. I'm not really feeling that bad. I just needed to complain and now I'll smile to make you (whomever I'm talking to) feel better so I don't leave you feeling the way I'm feeling..."
Why do we feel the need to do that?!?!?!?!??!?!? Totally kills the phew! Thank God I got that off my chest feeling you get from venting when you need to. Where did this pretend everything is fine and it will be mentality come from? Sometimes, believe it or not. Like it or not. Sometimes, LIFE SUCKS. Life hurts. Life kills. Believe it or not, it does!
And no, I'm not apologizing for being blunt. When ever did being blunt get such a bad rap? I say, find that person, that blog, that journal, that counselor, that you can be frank with without feeling the need to add a sad apologetic smile at the end and USE IT! VENT the SHIT out of what you need to vent about.
Cry your eyes out! Scream at the top of your lungs! Use cliches up the wazoo!
And then be done with it. Complain until your heart's content!!
And then fly away with the breeze because you're now weightless. You no longer have anything tying you down. Weighing you down.
There's nothing to be gained from saying your sorry about complaining, venting, about how unsatisfied you are that life hasn't panned out the way you wanted it to. You only get one shot at this, dammit. My soul might have been recycled from past lives and will be after I go, but I don't recall any of them. This is it. THIS is my life. And I'm pissed.
Pissed OFF!
I loved my life. I LIKED my life. Now I have this shitty POTS crap that I don't know if I'll ever be rid of until I'm rid of...and that thought right there is enough to make me want to curl up and cry. But I won't. I'll get mad instead. And that helps. Get mad, do something about it, and maybe, just maybe, I'll figure out a way to get this shit taken care of. How to fix/cure/get rid of POTS.
Because, dammit. I don't want this shit anymore. I've got plans. I've got things I want to do. And I'm done with this crap being in the way.
Two years.
I've got a two year plan. Two years to fix this shit, or I'm on to plan B. And I am not going to apologize for it either. THIS was not part of my plan. I was going to live free and clear and happy and healthy well into my 90's. I don't do drugs, don't smoke, don't drink heavily all day long. I eat right. Exercise. I may have not had myself at the top of the 'take care of' list (or anywhere near the top) for a while, but WTF! I put everyone else above me and THIS is what I get?!?!? Bullshit...
More on all of that later....
For right now, I'm feeling weightless from good ol' venting. It's good to get it all out, and no, you should never feel you have to be sorry for it. God made tears for a reason. God made anger for a reason. I will complain until the end. I will not smile and just lie down and give into this junk.
I sure as hell won't be that relative everyone says at her funeral, "oh, the dear. she was sick for so long, but never complained."
Are you fucking crazy?! Why the fuck not?! Did she not LOVE her LIFE?!
More on that later...
I'm mad. Gonna use it. Or die trying.
No smiles attached.
Saturday, March 5, 2011
Bad POTS day, Good POTS day...
That's how the story goes. How my life is going.
One day is good, the next thirty, bad. And just when I thought I had it, had figured out the pattern of it all - good weather day, good POTS day, yeah! - a great weather day comes along and I can't catch my breath to save my life.
All. Day. Long.
Sucks. And here I was going to blog about the ups and downs (ha, who am I kidding. Just the downs) of having POTS, but the thing is: I can only seem to get on here on a good POTS day...and when will the next one be, I don't know.
What's a good/bad POTS day look like? Oye, do you really want to know?...
A Good POTS day looks like this:
I wake up and my heart rate is normal. I'm not soaked from sweating all night long, my head isn't foggy, I can think straight and when I get up, out of bed, I'm not dizzy, light headed, feel like I'm about pass out. I still take my beta blocker, still drink two glasses of water with 1/2 teaspoon salt before doing anything else (because I know this isn't going to last, this good feeling) and go about my day.
On a good POTS day, I can breathe. I can walk up the stairs without it feeling like I've just run a marathon. I can pick up my kids and give them kisses without having to catch my breath first. I can kiss my husband without having to catch my breath first. I can go to the mailbox or walk to the bus stop and not feel like I have to get inside ASAP and lay down for the next half hour because I've just taxed the shit out of myself. I can go out and do things and not have to end my day abruptly to go home, lay down and wonder if this is it. This is how I'm going to feel for the rest of my life.
What does a bad POTS day look like?...
I'll leave that for a bad POTS day. I don't want to think about it now. I'm having a 1/2, 1/2 day today which, in essence, is a good POTS day. Anything outside of a full on bad POTS day is a good day.
So, I'm just going to take a shower, spend some time with my kids, and possibly go out later today to use that gift card I've been itchin' to use. Want to get some new running pants and shirt since I AM going to get back into it. I am. I have to. Otherwise... I'll blog about that another time. I'm not thinking about the whole heart/exercise/POTS eradication thing right now.
Right now, I'm taking a shower. Vent. Shower. Move on.
One thing at a time.
One day is good, the next thirty, bad. And just when I thought I had it, had figured out the pattern of it all - good weather day, good POTS day, yeah! - a great weather day comes along and I can't catch my breath to save my life.
All. Day. Long.
Sucks. And here I was going to blog about the ups and downs (ha, who am I kidding. Just the downs) of having POTS, but the thing is: I can only seem to get on here on a good POTS day...and when will the next one be, I don't know.
What's a good/bad POTS day look like? Oye, do you really want to know?...
A Good POTS day looks like this:
I wake up and my heart rate is normal. I'm not soaked from sweating all night long, my head isn't foggy, I can think straight and when I get up, out of bed, I'm not dizzy, light headed, feel like I'm about pass out. I still take my beta blocker, still drink two glasses of water with 1/2 teaspoon salt before doing anything else (because I know this isn't going to last, this good feeling) and go about my day.
On a good POTS day, I can breathe. I can walk up the stairs without it feeling like I've just run a marathon. I can pick up my kids and give them kisses without having to catch my breath first. I can kiss my husband without having to catch my breath first. I can go to the mailbox or walk to the bus stop and not feel like I have to get inside ASAP and lay down for the next half hour because I've just taxed the shit out of myself. I can go out and do things and not have to end my day abruptly to go home, lay down and wonder if this is it. This is how I'm going to feel for the rest of my life.
What does a bad POTS day look like?...
I'll leave that for a bad POTS day. I don't want to think about it now. I'm having a 1/2, 1/2 day today which, in essence, is a good POTS day. Anything outside of a full on bad POTS day is a good day.
So, I'm just going to take a shower, spend some time with my kids, and possibly go out later today to use that gift card I've been itchin' to use. Want to get some new running pants and shirt since I AM going to get back into it. I am. I have to. Otherwise... I'll blog about that another time. I'm not thinking about the whole heart/exercise/POTS eradication thing right now.
Right now, I'm taking a shower. Vent. Shower. Move on.
One thing at a time.
Thursday, February 17, 2011
miss POTS...a dysautonomia blog
And here we are...
I'd like to welcome you all to the miss POTS blog. However, if you're here for the same reasons I am, a welcome really isn't what's in order. If I could give you a nice pile of dishes that you could throw against a wall - feel them smash, hear them break - I'd rather do that. I'd love to do that myself right now, actually.
miss POTS is a blog for people concerned with, interested in, have POTS - Postural Orthostatic Tachycardia Syndrome. It's a form of Dysautonomia - dysfunction of the autonomic nervous system. And it's a syndrome because no one knows what causes it nor cures it.
Lovely...just lovely...
My reasoning behind the word 'miss' is quite simple. If you have POTS like me, you've lived through the explanation already: POTS is so easily, so frequently misdiagnosed, you'd think the medical community as a whole was still practicing medicine as opposed to knowing what the hell they were doing...
Oh, yeah. They are practicing.
Misdiagnose me again. Misinform me again. Misenrage me again, why don't ya! I'll pay through the ears for something, anything, to blame for the way I feel...
I was misdiagnosed for years - aka: told I was simply hyperventilating, told I was just anxious, told I was depressed, go see a shrink. I've had heart monitors, lung x-rays, EKGs, EEGs, MRIs...I've seen a myriad of doctors who've performed every blood test imaginable, only to come up with one simple unanimous conclusion:
I'm perfectly healthy.
My heart is perfect. My lungs, perfect. Brain perfect.
Then why can't I breathe? Why do I have roaring in my ear? Hair falling out? Why am I always dizzy? Foggy? Have an elevated blood pressure the moment I wake up? Feel like I haven't slept in days? Can't think straight? Am so fatigued I feel like I'm walking through a sand pit all day long? Breathing through one? Why does walking to the mailbox tax me like a marathon? Why can't I run without my face going numb? Stand for more than two minutes without my arms going numb? Why can't I retain salt? Why am I so dehydrated that I've been to the ER and almost died because no one could figure out what the hell was wrong with me?
WHY WHY WHY?
And all the doctors say...
Because you are perfectly healthy...
Well, shit. That's just about enough to make anyone go nuts.
Hence this blog. I need somewhere to vent. To purge. To complain! I feel so damned geriatric 90% of the time, and I'm only in my early 30's! I have a family. A business. Aspirations. Dreams. But instead of loving life to the fullest and taking care of everything the way I want to, need to...instead... I feel like I'm dying.
Maybe in my venting, researching, complaining, thinking things through, I'll find some ways to make myself feel better. Maybe I'll help someone out there help their doctor get a clue because they have the same symptoms I do and all they've heard so far is, "your just depressed. take this pill."
I don't want to be sick. I want to be vivacious. I am alive, aren't I? I love my life! But this stupid assed POTS...I'm going to figure it out. I'm pissed off and determined. I guess that's what it's going to take.
So maybe together we can find a reason, a cure. I'll post everything I feel and find, okay? You do the same. The only way to get better, I've found, is to be your own advocate. Your own researcher. Doctors aren't working 24/7 for you. YOU have to. I have to. And that's how we're going to figure this shit out.
Alrighty then.
Miss POTS, over and out.
I'd like to welcome you all to the miss POTS blog. However, if you're here for the same reasons I am, a welcome really isn't what's in order. If I could give you a nice pile of dishes that you could throw against a wall - feel them smash, hear them break - I'd rather do that. I'd love to do that myself right now, actually.
miss POTS is a blog for people concerned with, interested in, have POTS - Postural Orthostatic Tachycardia Syndrome. It's a form of Dysautonomia - dysfunction of the autonomic nervous system. And it's a syndrome because no one knows what causes it nor cures it.
Lovely...just lovely...
My reasoning behind the word 'miss' is quite simple. If you have POTS like me, you've lived through the explanation already: POTS is so easily, so frequently misdiagnosed, you'd think the medical community as a whole was still practicing medicine as opposed to knowing what the hell they were doing...
Oh, yeah. They are practicing.
Misdiagnose me again. Misinform me again. Misenrage me again, why don't ya! I'll pay through the ears for something, anything, to blame for the way I feel...
I was misdiagnosed for years - aka: told I was simply hyperventilating, told I was just anxious, told I was depressed, go see a shrink. I've had heart monitors, lung x-rays, EKGs, EEGs, MRIs...I've seen a myriad of doctors who've performed every blood test imaginable, only to come up with one simple unanimous conclusion:
I'm perfectly healthy.
My heart is perfect. My lungs, perfect. Brain perfect.
Then why can't I breathe? Why do I have roaring in my ear? Hair falling out? Why am I always dizzy? Foggy? Have an elevated blood pressure the moment I wake up? Feel like I haven't slept in days? Can't think straight? Am so fatigued I feel like I'm walking through a sand pit all day long? Breathing through one? Why does walking to the mailbox tax me like a marathon? Why can't I run without my face going numb? Stand for more than two minutes without my arms going numb? Why can't I retain salt? Why am I so dehydrated that I've been to the ER and almost died because no one could figure out what the hell was wrong with me?
WHY WHY WHY?
And all the doctors say...
Because you are perfectly healthy...
Well, shit. That's just about enough to make anyone go nuts.
Hence this blog. I need somewhere to vent. To purge. To complain! I feel so damned geriatric 90% of the time, and I'm only in my early 30's! I have a family. A business. Aspirations. Dreams. But instead of loving life to the fullest and taking care of everything the way I want to, need to...instead... I feel like I'm dying.
Maybe in my venting, researching, complaining, thinking things through, I'll find some ways to make myself feel better. Maybe I'll help someone out there help their doctor get a clue because they have the same symptoms I do and all they've heard so far is, "your just depressed. take this pill."
I don't want to be sick. I want to be vivacious. I am alive, aren't I? I love my life! But this stupid assed POTS...I'm going to figure it out. I'm pissed off and determined. I guess that's what it's going to take.
So maybe together we can find a reason, a cure. I'll post everything I feel and find, okay? You do the same. The only way to get better, I've found, is to be your own advocate. Your own researcher. Doctors aren't working 24/7 for you. YOU have to. I have to. And that's how we're going to figure this shit out.
Alrighty then.
Miss POTS, over and out.
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