no energy. so weak i can’t even talk today.

no sleep last night. AWAKE. ALL. NIGHT. in awful pain all night. body aches, night sweats. i feel like i’m back at the beginning —but why? i am DOING EVERYTHING RIGHT!!!!!!!!!!

last night was hell: as soon as the body aches continue for hours, the chest pains follow and then i’m awake all night wondering “is this it? the big “it”??” my heart was doing somersaults in my chest. who ever knows what it is. at any given time it could be good or bad flutters, anxiety, or worse, arrythmias. well, we’ll find out tomorrow when they “interrogate my device” which means they check my pacemaker to see if it has recorded any funky rythms.. and not the good kind.

the best way i can describe what i feel is that someone’s sitting on my chest, my heart is fluttering, completely naush, feel like i’m gonna faint everytime i am standing up and every muscle in my body feels like i went to the gym yesterday and did weight training for like 10 hours. the worst part of all of this (always)?? i’m really scared. it’s all unclear as to why this happens and i never get answers. it’s like a circus calling around to my docs when this happens. although, my one doctor got on the case and told me to meet him at his office first thing this am and we’d assess whether or not this was an “acute cardiac” problem and i if i should get to a hospital (boo). so, after hours at his office and yet another needle stick in my poor little arms (my right one is out of service for the next couple of months because all of the veins are collapsing), i left his office with a script for steroids.

i have avoided taking steroids for so long yet i had to take them for awhile back in jan and finally FINALLY came off (which was really hard to do physiologically) on May 1st. I was so proud! I was soo happy! And now, here I am again, absolutely desperate just to feel better, just to have some sort of promise that i may be able to leave the house this upcoming sunny weekend; so down the hatch go 6 pills of pure steroids. ugh. what does the doctor think? he doesn’t know. he has not a clue what is happening. usually when these things happen (all too often) my blood tests come back looking perfect. it’s sooooo frustrating. but he does know that steroids often make people feel better.

been on the couch all day. on a positive note my angel was with me all day today so i had company. it makes a huge difference to not be left alone with your thoughts when i feel like this.

prisoner of my body, day 400.

off to get the Kicker “interrogated” first thing tomorrow morning and then straight to columbia to see the heart transplant doc. maybe she can get to the bottom of this. that office scares the sh*t out of me. it’s like a supermarket… the check-in desks literally all lined up next to each other in the transplant wing “lung” “kidney” “liver” “heart”. yikes.

wish i had better news for everyone. let’s hope the roids kick in and tomorrow i’m better. ew steroids.

until tomorrow…..

the fainting thing happened again this morning.

it could be a bunch of reasons.. my heart? maybe i am dehydrated? (i have to take these water pills that suck the life out of me) maybe i’m malnourished considering it’s so hard for me to eat since the whole hospital /colitis thing. that was fun. so, here i am , always confused, always trying to figure out why things are happening to my body.

today i decided to call my heart docs because i am scared. i am here, at home, feeling like i’m fainting sitting on the floor and my chest is heavy. now i am just drained and any plans for the day are out the window. it’s the couch for me. again.

so, i call my cardiologist… did you take your blood pressure? yes, it was actual quite normal for me. oh, then you need to call your electrocardiologist (the one that deals with my pacemaker/defibrillator) “because you would only come to me if your blood pressure was low and we had to tweak your meds or something”. so the ping pong game begins. i call my electro cardiologist. she doesn’t even get on the phone and she tells her snide nurse to tell me to call my cardiologist “i did that already, he said to call you”. i wait on hold for a while. she finally gets on the phone. “well, we have to interrogate your device” this means, they pull up all activity that my pacemaker records at all times. “it’s crazy here today, i’ll put you on with one of the girls who will squeeze you in” friday 8 am… thanks, that really helps me right now.

i also left a message for my nutritionist because what if i’m not absorbing nutrients and that’s why i’m fainting? well… that was monday and i have yet to hear back from her even though i said in the message that i keep fainting!!!

and these are all people who are the “best” at what they do. no joke, i’ve done my research… other docs actually revere these doctors. yet, i can’t get a single answer out of anyone. i knew that once i had this machine put in my body i would be put on the back burner because they know i’m not gonna croak on their watch. so they put me on hold, disregard the fact that i tell them i am very scared, and go on robbing people.  it’s awful. it’s the worst feeling —to be helpless.

so, it just goes back to the fact that i am the only one that can help me. i wish i knew why i was fainting but i guess i’ll figure that one out on my own. it’s my only choice.

i also called cleveland. for some reason i don’t get a call back from there either. once on thurs and once yesterday. why am i being left out in the cold? why does nobody care?

i am so sick of this. it just makes me feel like i’m back at square one. back at the beginning. i feel like any progress i’ve made is gone. i am once again, afraid to even go outside to the corner deli by myself. i am once again, a prisoner of my own body. i want to scream.

try and stay positive with all this going on? a really hard thing to do…

miserable day.

was bold enough to actually make brunch plans! yes, plans to meet friends who i have not seen in a long time.  we decided to go to brunch almost a week ago. i have been really looking forward to this.  i was especially confident i could do it considering we decided to go to a place 4 blocks from my house.  i’d go see them and then see my family. simple, right?

wrong.

once again, i was not feeling well yesterday/last night.  i was awake tossing and turning the whole night.  i got out of bed this morning feeling AWFUL.  body aches, joint pains, totally weak.  i set my mind to it right then, i am GOING to do stuff today I will NOT let this affect me.  I took a shower, took my blood pressure as I usually do, took my meds and off I was. blood pressure looked good even after the heart meds. not so fast Lauren… I told Thomas I felt really faint.  He said he’ll walk me to the restaurant just to be safe.  Well, good thing he did. as we were walking 1 block, 2 block.. i was getting those all too familiar white spots.  3rd block, i can’t shake these white spots.  now at the front of the restaurant, full on faint mode. it’s drizzling on me, i am sweating a lot, i managed to see my friend waiting at the bar and she came outside. there we stood, all kind of watching to see if I am actually gonna go down. i looked for a place to sit.. nothing… next thing i know i am squatted on the sidewalk head down, and thomas and karina are on the ground with me.  it was awful on so many levels.  mostly because I am hard on myself for not being able to do STUFF!!!!! like, totally angry frustrated and of course, terrified because WHY AM I FAINTING?! i do EVERYTHING right!  i take my meds, eat healthy, take care of my body. i feel like i am back to the scary days before the Kicker was implanted and i was terrified to go out by myself.  here i am again! i mean, what would i have done if thomas decided to just let me walk on my own?  how do i get the courage to go out and about this week on my own?  what do i do when i feel faint? sit on the sidewalk?

so, brunch was out of the question.  i came to, got enough energy to stand up, and thomas practically carried me the entire 4 blocks home —i had to stop frequently to crouch down and make the white spots go away.  my body felt like lead, my joints like twigs that were cracking, my chest heavy, and totally drained.  like my whole life was just being sucked out of me.

back home, on the couch, another sunday in my spot.  couldn’t even concentrate on tv. called two of my docs, neither “on call” this weekend. do i want to speak to their associates? been there done that. the answer is hell no.  i’d rather save my energy.  nobody can help me. thomas and i sit here, helpless, trying to devise a plan. how can we get me better? what was it THIS time that made me faint? the heart? the stomach? the lack of food because i cannot eat? blood sugar? i can go on and on and on.  all i know is i am siiiiiiick of it. and i am especially sick of feeling helpless.  

sorry to start your week off on a not-so-happy post.  but, this is my life!  still, not giving up. still gonna fight, gonna get to the bottom of this.  let’s just all hope i don’t faint when i’m on the street by myself. that’s a big fear of mine.

until tomorrow.  looking forward to a fresh start.  this week i’ll feel good. this week is the week that i start feeling like myself again.  it has to be.

sending love

Lauren 

had a long long day.  lots to tell and talk about but frankly, i am exhausted! i am arranging my upcoming trip to cleveland, the fundrager, doctors appointments, phone calls, oh my!

we all know how much i HATE this weather, i feel like i’m 90 years old. took me like 2 hours to actually get out of bed this am. 

so, to kick off the weekend i figured i’d leave you with some vintage Lauren; my very very first post on this blog.  i read it today and it’s amazing how much has happened since then (Jan 6th) and yet, how much is still the same.  a big difference: i now am lucky enough to have the Kicker helping out my heart, but i’m still bringing you horror stories from the doctor offices, i wish this wasn’t the case.

one last thing before i go… the website is up!  yup, it’s happening! the FUNDRAGER.  my friends have been amazing in planning this and it’s actually here!  check out the website, we are very very proud of it:

www.savelaurensheart.com

until this weekend…

i hope everyone is warm and cozy!

good night & lots of love  L

1st post ever:

The Waiting Game (or Criminal Activity)

And so it is, my very first post.  I don’t even know where to begin.

The title of my tumblog is a great place to start. If one more doctor/ receptionist/ lab technician/ pharmacist sends those words in my direction once more I will go batshit crazy on them smile and simply say “neither do you!” What does sick look like exactly? Yea, I’ve got a few kinks here and there and my Ticker up and decided it would take a little vacation without giving us advance warning but that doesn’t mean I should “look” a certain way.

As of January 6th 2008 this is what’s on the menu:

I just spent the past 48 hours in bed, in the worst pain I think I have ever felt. But that’s a different post all together and when I’m up for it we’ll cover that story. The important thing is, I am feeling better with each passing hour.

The docs informed me about two weeks ago that it is a good idea to put an implantable defibrillator into my chest. Yikes. That came out of nowhere. I mean, we had this conversation back at the hospital in October but I had passed a test with flying colors so I thought I was in the clear. Turns out, not the case. My Ticker hasn’t performed to their standards at this point so it is more of a safety precaution. It is there to prevent any “bad” rhythms from taking place, which I am vulnerable to since my Ticker is not pumping at the percentage it should be. This leaves things all whacked out and the defib will be there to shock me if things get funky.  Once this defibrillator is in, it cannot be removed (well, it can technically but there is some risk in that so they prefer to just keep it in).  I would get it changed every 5 years for a new battery.

Over the course of this I have seen many doctors (all whom, I’ve been told are the “best” at what they do). Yet, I have constantly been pin balled back and forth between them, not a single one ever actually giving me a diagnosis. They simply treat my symptoms and wait to see what happens. A lot of times they even directly contradict each other. It’s really fun when that happens.

So, today’s post is one written out of frustration due to the fact that I do not totally trust my doctors. I do not feel they have rolled up their sleeves and made it a priority to get to the bottom of things or take control of my treatment. We still do not know why this happened, and they are quite content in saying that “we may never know”. I am a much different animal in that respect. I will dig and dig. Take the case of the defibrillator for example: two weeks ago this sounded pretty urgent. They wanted to get it in as soon as possible yet, now here I am waiting for a phone call to take place on Wednesday? I feel a lot of times I am backed into a corner to make a decision and things seem urgent and yet these urgent matters seem to become suspended and do not matter when it’s time for the doctor to take vacation. I know what you’re thinking; find new docs. Well, I am always open to going to a new person yet I must say that I have come to believe that this is the current medical climate in the USA. Many doctors are praised for their specialties yet their bedside matter and commitment to a patient and actually getting them to feel better is unfortunately non- existent.

Hence, the title of today’s post “The Waiting Game (or Criminal Activity)”. I call it the waiting game because that is exactly what I am doing.. waiting. Waiting on test results, waiting on a doctor’s phone call, waiting waiting waiting waiting to see what the next step is and if and when I will get that nice piece of 3 inch jewelry implanted into my chest (note: a good Christmas or birthday gift to me from that point on will be chic, fun scarves)! The other part of my title comes from a close friend of mine who has gone through a similar run around and has been on a personal quest for answers; for his health and for well-being. Let’s call this friend “The Kid”. When The Kid hears my tales of dysfunctional doctors visits, waiting room and reception area antics, and the overall circus that has been my medical care, he says two things “you can’t make this sh*t up” and, in reference to the doctors; their waiting games, their contradictions, their lack of information on diet, their lack of interest, and the $300 bill they hand me after each visit in all their specialized glory “it’s criminal kid. It’s criminal activity.”

** It must be said that I am not against all doctors. I have come across some very able, intelligent, and very caring doctors along the way (thank you Dr. Arani). It is just sad that they are so few and far between.

Coming up: Off to party in Cleveland. Woo. I am excited to be going to the Cleveland Clinic and as soon as I have those dates I will post them.

i was just going through my mail from today and opened (what i thought was) a letter from Cleveland Clinic.

It was a bill for $140,000

$140,000 

no joke

Whoa

i haven’t written since the weekend because frankly, Monday’s doc appt really really annoyed me. i went to this doc (he was highly recommended by my doctor of 7 years) because i wanted answers as to why this crazy thing happened with my stomach. i went there with a clear mission: why did this happen? how can i prevent it? and i told him i never ever want to be in that much pain again —or in the hospital for that matter. to keep it polite, i was unimpressed…

things that made me worry

when i first went into his office, we discussed what was going on. he asked me how long i had been seeing my doctor let’s call him dr. S. my reply? 7 years

he brings me to the examining room, tells me to put on the gown and just before he leaves the room for me to change he turns and says “so how long have you been with dr. S now? my reply, 7 years!

he examines me in about 8 minutes. tells me to get dressed and meet him in his office. we start to discuss a course of action and he looks at me, says “wow it must be hard dealing with this at a young age” and (seriously) says “so you’ve been with Dr. S for how long?? I AM NOT KIDDING.

on top of the senility in question (or maybe he just was not listening to me which is totally possible, and has happened before), he is a specialist (specialist = i don’t take insurance). this means that appointment was $400 just for a consult. i expained to him that i can’t eat and that i am very weak, lightheaded, always naush, and very scared it will happen again. his answers? let’s have you run all over manhattan! he wants to send me for two invasive tests AND he wants to send me to another specialist — a blood doctor, to see if my blood is clotting as it should. huh? he also told me something i didn’t know… that pain i was feeling when i had that colitis attack is known amongst doctors as one of the worst on the pain scale. it is terrible. DUHHHHHHHHHH

the moral of the story? i paid $400 for this dude to send me to another doctor that prob also does not take my insurance and have me run around manhattan while i see white spots and feel like i’m about to faint. awes!

i asked how we can prevent this? is there certain foods that trigger this? no and no. what happens if i feel those terrible stomach pains coming on? go to the hospital for pain management. thanks doc.

i came home feeling helpless. another doc that can’t help me. another wasted trip, wasted time in the waiting room, exam room and to and from the place. the thing is, i’ve been through all of this before. i’ve done the tests. i’ve ran around. gotten poked in every vein in my arms. and what happens when they get these tests back? they want to put you on more drugs. more chemicals. the one he discussed with me is not a nice one and it can affect your kidney. so NO thank you. i came home and decided not to even do anything further. i’m gonna heal my stomach on my own. it’s gonna take a lot of discipline and i’ve already started but it’s about eating vegan.. even raw. and eating to live not living to eat as i always have. SIGH.

so, i was not so positive for the past few days and i didn’t want to spread the negativity. I am back now, the sunshine is helping and I’ll keep on going. I’ll do whatever it takes to heal, I’m just not down with shoving more drugs down my throat to put a bandaid over a symptom while the problem stays only to wreak havoc elsewhere. i have to get to the bottom of this. i have to be my own advocate, my own doctor. and that’s the way it’s going down.

i hope everyone can enjoy the spring day today. i’m actually supposed to go to lunch with a friend this afternoon. big outing for Lauren! weee

sending lots of love everyone’s way

xoxoxoL