I am not sure if thats an appropriate word but gosh this last week was rough! First time I saw my Momma cry! Over me... Bless her heart! I want her strength, truly amazing person. So where do I begin? Most people would say from the begin but that would take us awhile lol. I am not sure I have mentioned this but I have lung disease and severe to life threaten asthma. Some days i struggle to breathe and thats how this morning started and I really thougth it was just POTS boy was I wrong!
I woke up last wednesday and could bearly breathe but wasn't bad enough to concern me. It had been raining, I got into contact with dust so I mean I was going to be a bit short of breath. As the day progressed it got worse. I wasn't doing much just arts and crafts and not answering my phone AKA calling Momma. I finally called her asked her about dinner so I could and let her know i felt crappy. VERY crappy by the time she got home I called her and could NOT breathe to save my life. I was taking strait to the ER and after a couple hours transfered to a main hospital by critical care ambulance with paddles ready to go. I got here whre I am now and not even 24 hours later, I went into respiratory distress. The called an Emergency Response Team and got me in the ICU where i spent a couple days, OK almost a week fighting for my life to breathe. I wish I was kidding but I am not. I was oxygen IVs saline and just struggled every moment to breathe. I still have my fever but doing so much better. I really can't go into details about this. It was a night mare for all involved and I do not want people to relieve like I do.
POTS patient are severely dehydrated normally to and my asthma treatmetn set off my heart very badly! I was passing out, blacking out, i couldn't get up on my own, I was upped on my saline, had to get the heart team in here. It was a mess. But the good news is I am doing so much better. If you do have questions please feel free to PM me, or give me away to email you. Out of respect for my family. I am leaving out all the details. But also wanted to take a second to give a huge thanks to my team here you all are amazing and I am forever greatful. To my wonderful friends that stayed up night after night with me. And the local uni for working with my Angel here!
Truly from the bottom of my heart I do love you guys! The visits, the texts, the calls, the encouragement, really I am forever greatful! And Dr R truly an amazing man i highly look up to you!! And Mr G for taking tim to speak with Momma and myself :-D
Love POPPET~
Tuesday, October 16, 2012
Thursday, October 11, 2012
Fluids, Hypovelimia, Hearts, Lung Infections... Oh My!!
Where do I start?
Well I wasn't feeling good couldn't breathe well, had a drastic down fall within an hour! Not shocking for me but not good either. I have very bad asthma, and generalized lung disease. Albuteral/atrovent is none to dehydrate you! This is life threatening me. I am hypovolemic chronicially, add this it gets worse and my heart goes to crap! Ok let me rephrase it in more proper non sleep deprived, hunger driven terms. My heart will palpitate, skip beeps, sinus tachycardia, supra-ventricular tachycardia and my least fave v-tach! Get the crash cart ready call the codes the girl is going! However, Superman saves the day and has me on a heavy dose of fluids cause we love you!! The way I have read and live thru it, if you have no circulating blood volume, well it feels and look like none, but I am typing this so there is SOME. The heart in POTS does NOT like this, but really dear POTS what does the heart like? lol OK really. Dehydration and POTS is a serious no-no. My heart feels so much better dear lovely fluids. Superman and Mrs Nurse or Ms. Nurse! Really serious blessing!
So when a POTS patient has lung disease and severe allergic asthma this situation can get quite sticky. VERY sticky. I NEED the albuteral, I NEED the steroids, and in this case the antibiotics. So what we normally do is space it out. So I am not over doing my heart. For those of you that do not know what albuteral does to some patients (i do know people that this does not happen to) the average person does become Tachycardic. So lets just throw that into the mix. What happens when your lungs are compromised? MORE stress on the heart. Now yall get why I am where I am! :-D I personally can not take any heart rate reducing drugs thanks to my asthma and low blood pressure.
Lung infection possible... I do have a fever and on top of asthma and my heart. Well yes you get it...
I look like crap, but my spirit is good
Love Yall!!
Poppet~
Well I wasn't feeling good couldn't breathe well, had a drastic down fall within an hour! Not shocking for me but not good either. I have very bad asthma, and generalized lung disease. Albuteral/atrovent is none to dehydrate you! This is life threatening me. I am hypovolemic chronicially, add this it gets worse and my heart goes to crap! Ok let me rephrase it in more proper non sleep deprived, hunger driven terms. My heart will palpitate, skip beeps, sinus tachycardia, supra-ventricular tachycardia and my least fave v-tach! Get the crash cart ready call the codes the girl is going! However, Superman saves the day and has me on a heavy dose of fluids cause we love you!! The way I have read and live thru it, if you have no circulating blood volume, well it feels and look like none, but I am typing this so there is SOME. The heart in POTS does NOT like this, but really dear POTS what does the heart like? lol OK really. Dehydration and POTS is a serious no-no. My heart feels so much better dear lovely fluids. Superman and Mrs Nurse or Ms. Nurse! Really serious blessing!
So when a POTS patient has lung disease and severe allergic asthma this situation can get quite sticky. VERY sticky. I NEED the albuteral, I NEED the steroids, and in this case the antibiotics. So what we normally do is space it out. So I am not over doing my heart. For those of you that do not know what albuteral does to some patients (i do know people that this does not happen to) the average person does become Tachycardic. So lets just throw that into the mix. What happens when your lungs are compromised? MORE stress on the heart. Now yall get why I am where I am! :-D I personally can not take any heart rate reducing drugs thanks to my asthma and low blood pressure.
Lung infection possible... I do have a fever and on top of asthma and my heart. Well yes you get it...
I look like crap, but my spirit is good
Love Yall!!
Poppet~
Monday, October 8, 2012
What POTS taught me.
It's a cool morning today, it's in the low 50's. I had to go in for blood work, and got to talking to a tech with my name (:-D). So I got me thinking of what POTS has taught me about life. Or well a Chronic Disease has taught me.
Most of us (I included) take life for granted. Or at least I use to. If you read my beginning blog you will see a bit of my story.
Over the past few years I learned in order to live and truly love life you must know what it is like to survive. Literally survive. I know what it's like to be in and out of hospitals, fight for my life, litteraly fight to live to see the next hour. Not the next day, the next hour. Nurse and doctors surrounding me, helping me fight to survive. I have doctors brush me off cause they can't make money off of me...
I came to learn there are GOOD people in the world. I had a doctor tell me after years of fighting for answers that, there is something wrong and he can help me. He took the time out of his day and still does to help me!! My diagnosis was not with in his specalty and he helped me and he's gotten the most wonderful doctors. I had a nurse hold my hand for an hour just to keep me calm. I have had people become my friend in spite of my illness when most people walk away.
I learned there is value in life! I know must of get up and get thru the day just to go back to bed. I know I am guilty! There's day I didn't even get out of bed it wasn't worth the effort. Until one day it was HARD to get out of bed. I was dizzy short of breath, passing out. Wake up and thank God you made it to the next day! It really is a treasure.
It really is all about the little things in life. I had 3 skin biopsies.... spent weeks in the hospital... there are days i get up and pass out... this means it can be a few days in between showers. I look forward to taking a bath... I look forward to washing my hair... I look forward to making my own meals... Spending the day with my Momma outside the house! I love going to our local cupcakery! I love playing with the kitten. I got to sit outside for a few mins in the crips morning air with coffee! it was fabulous!
True friends are hard to come by and be thankful for those that are close to you! Cherish them!
Really just enjoy life!! Really life is truly beautiful. You can find things to love in life. Its really all about how you look at things. You can either go oh woe is me or you can take what you learn and embrace it and smile!
On that note. I have a wonderful cupcake with black pumpkin spice coffee. Chatting with a wonderful friend and have a kitty!
Love yall!!
Poppet ~
Most of us (I included) take life for granted. Or at least I use to. If you read my beginning blog you will see a bit of my story.
Over the past few years I learned in order to live and truly love life you must know what it is like to survive. Literally survive. I know what it's like to be in and out of hospitals, fight for my life, litteraly fight to live to see the next hour. Not the next day, the next hour. Nurse and doctors surrounding me, helping me fight to survive. I have doctors brush me off cause they can't make money off of me...
I came to learn there are GOOD people in the world. I had a doctor tell me after years of fighting for answers that, there is something wrong and he can help me. He took the time out of his day and still does to help me!! My diagnosis was not with in his specalty and he helped me and he's gotten the most wonderful doctors. I had a nurse hold my hand for an hour just to keep me calm. I have had people become my friend in spite of my illness when most people walk away.
I learned there is value in life! I know must of get up and get thru the day just to go back to bed. I know I am guilty! There's day I didn't even get out of bed it wasn't worth the effort. Until one day it was HARD to get out of bed. I was dizzy short of breath, passing out. Wake up and thank God you made it to the next day! It really is a treasure.
It really is all about the little things in life. I had 3 skin biopsies.... spent weeks in the hospital... there are days i get up and pass out... this means it can be a few days in between showers. I look forward to taking a bath... I look forward to washing my hair... I look forward to making my own meals... Spending the day with my Momma outside the house! I love going to our local cupcakery! I love playing with the kitten. I got to sit outside for a few mins in the crips morning air with coffee! it was fabulous!
True friends are hard to come by and be thankful for those that are close to you! Cherish them!
Really just enjoy life!! Really life is truly beautiful. You can find things to love in life. Its really all about how you look at things. You can either go oh woe is me or you can take what you learn and embrace it and smile!
On that note. I have a wonderful cupcake with black pumpkin spice coffee. Chatting with a wonderful friend and have a kitty!
Love yall!!
Poppet ~
Friday, October 5, 2012
Life Happens
Hey Yall!!
Oh gosh I do not eve know where to start! I have not forgotten about this and everyone its just been crazy busy for me! I am so thankful for a few people in my life! They know who they are and I could not be more thankful for their support especially with everything that has been going on.
I have said this for years which has earned me the title of Pixie :-D I am going to make a magic wand! I have pixie dust! I am going to cure the world of disease and then I am going to send myself off to the English country side!
Did Yall get to meet Abselom? My central line? I had reaction to my statlock! As of today he is a month old and I can lift my arm over my head when I need to. Not daily though. I straitened my hair yesterday and popped the dressing! This can be BAD! Nurse Momma to the rescue as always! lol Yes everything is fine!
I also had 3 skin biopsies this week. It was the worse pain i ever felt in my life. And I've broken bones and tendons. I have piercing's and tattoo's. It hurt SO bad. They are checking my nerve fibers to see the damage that is in them and pairing it with an autonomic lab. That was an interesting test. The technology is fabulous to! I was more interested in how it ran then being put through it. What an autonomic lab does is test how your autonomic nervous system works or well doesn't work. They do a tilt table, sweat test, breathing/heart test, and I think there was something else but it slipped my mind. I am eager to see the results. I know my body does not work but I would love to see the extent to which is does not work.
The best part of all the nonsense going on. Yes nonsense because what better way to describe a non working body? One of the local University's is lucky to have Momma working there. Which has her deemed Wonder Woman. Dr. Dean was kind enough to let Momma bring me to teach how to properly change a dressing and while I was there I got to educate the next generation on POTS, and what I deal with on a daily basis. It was a blessing to be a part of the education that day, and so blessed to talk to a group of Nursing students about what goes on, as well as my experience's in the hospital! I can tell which students are eager to be there and have a passion for nursing. If I ever see yall in the hospital I would be glad to have some of you as nurses! You have a great instructor and I am sure Momma will hate me for this but PICK HER BRAIN!! Go talk to her!! But when you do talk to her make sure you have your duckies in a row. Make sure you have a reason based of research why you think your right! She is always willing to help a student that is interested in learning!
Love you guys!
~Poppet!
Oh gosh I do not eve know where to start! I have not forgotten about this and everyone its just been crazy busy for me! I am so thankful for a few people in my life! They know who they are and I could not be more thankful for their support especially with everything that has been going on.
I have said this for years which has earned me the title of Pixie :-D I am going to make a magic wand! I have pixie dust! I am going to cure the world of disease and then I am going to send myself off to the English country side!
Did Yall get to meet Abselom? My central line? I had reaction to my statlock! As of today he is a month old and I can lift my arm over my head when I need to. Not daily though. I straitened my hair yesterday and popped the dressing! This can be BAD! Nurse Momma to the rescue as always! lol Yes everything is fine!
I also had 3 skin biopsies this week. It was the worse pain i ever felt in my life. And I've broken bones and tendons. I have piercing's and tattoo's. It hurt SO bad. They are checking my nerve fibers to see the damage that is in them and pairing it with an autonomic lab. That was an interesting test. The technology is fabulous to! I was more interested in how it ran then being put through it. What an autonomic lab does is test how your autonomic nervous system works or well doesn't work. They do a tilt table, sweat test, breathing/heart test, and I think there was something else but it slipped my mind. I am eager to see the results. I know my body does not work but I would love to see the extent to which is does not work.
The best part of all the nonsense going on. Yes nonsense because what better way to describe a non working body? One of the local University's is lucky to have Momma working there. Which has her deemed Wonder Woman. Dr. Dean was kind enough to let Momma bring me to teach how to properly change a dressing and while I was there I got to educate the next generation on POTS, and what I deal with on a daily basis. It was a blessing to be a part of the education that day, and so blessed to talk to a group of Nursing students about what goes on, as well as my experience's in the hospital! I can tell which students are eager to be there and have a passion for nursing. If I ever see yall in the hospital I would be glad to have some of you as nurses! You have a great instructor and I am sure Momma will hate me for this but PICK HER BRAIN!! Go talk to her!! But when you do talk to her make sure you have your duckies in a row. Make sure you have a reason based of research why you think your right! She is always willing to help a student that is interested in learning!
Love you guys!
~Poppet!
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