I'm not even sure what to title this

Very few of you know this but I need to under go more testing for my blood. I probably have told 6 of you? Probably not even that many. I am sure most of you are thinking how much more testing are you going to put yourself through? Well, as much as it takes. I have dreams that need to be reach and something as stupid as blood disorders can't stop me. Really I am so close to Premed again I have applied for schools! If you know me someone stupid disease can't stop me i am way to stubborn!

Before yall go off on a rant and in the word of Wonder Woman "its not stupid" OK to me it is! This is why! I deal with my heart, my lungs, and dysautonomia.  My heart does weird things and i have grown accustomed to palpitations. Once upon it time it would happen and i'd freak out and call my Momma and think it was something serious. Now chest pain and palpitations is normal life. Lungs? Well I am always short of breath. I can never breath well and I have grown use to it. Lets not forget about my central line with the rash, the stitches, and the blisters. Oh you can also scroll back and read about my ICU visit.

This all lead to me thinking. We get use to a certain amount of pain and misery. It becomes a part of our lives we get use to it and it becomes normal. It finally gets to the point it no longer bothers and worries you. I know I am not the only one living in pain, I am sure at one point we all become use to living in pain and just write it off as "normal." I personally have gotten use to being sick, I am use to chronic chest pain, shortness of breath, easy bruising, and I just smile and say I am OK. But really I am OK. However... Should we just get use to a certain amount of misery? OR should we continue to fight for answers in hopes that one day we can feel well? I personally fight for answers and the right "cocktail" so that I can lead a "misery free" life.

Today wasn't so bad health wise and that I am thankful for! I do not care that i take almost 10 medications to have a good day! I feel OK today and I am thankful for that! I will never know what its like to feel healthy and i really do not care anymore. I am glad i am at my range of OK, I am glad I am able to do what I can do, and I will always fights for answers to achieve my dreams and my goals. :-)

I am not sure where I was fully going with this but thats OK. I am going hop off and get this dressing changed and smile at the beautiful day I had even though it rained AGAIN!! lol Maybe 2 people will get that!

Love Yall :-)
Poppet ~

Office Day! ... Rambles

Its been awhile since I have updated this. I have been a bit busy lately. I think I have several appointments a week. Actually I think this was the only week I've only had ONE appointment and thats only because its a holiday week. The appointment that I had was an emergency appointment to. I had gotten another Chest infection and I caught this one early. Or well Rube's caught then Momma made me call Superman!

This infection I managed to stay out of the hospital which is good cause I didn't have to fight food allergies! An oddly enough I got sick the weekend of the Food Allergy walk for a cure that I had to miss because Momma was scared I was going to get sick. I ended up running around stressed out with a friend that day. I also found out I am allergic to Op-sites which are hypoallergenic dressings! My medical staff I hate to call them that I need to find a name for them is just confused at all the mess!

As for my POTS? Well my heart has acted up some. I know yesterday it was really high, my heart rate that is. Which is awful I was enjoying my time to! Isn't that always when your heart acts out? When its not suppose to? Haven't had many other issues lately. My IV did break though which caused some dehydration issues last week. I had NO idea it was broke. Not sure how long it was broke either, it just pooled in the bag i carry and leaked all over my Grandma's clean floor I had a puddle. HILARIOUS!! Yes I am a brat lol.

I see Cardio soon so hopefully I will have more of an update then. I know Superman keeps running blood work and reading over my other records and everything is coming back consistent with POTS. Which I had no idea there was a lot of blood work based around POTS. I will definitely be looking for research on this.

Well I am off to find Wonder Woman. I am here with her today and seen her long enough to ask for coffee :-D!!

Hope all is well outside of wonderland :-D
Love Poppet~

Battle?

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~

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~

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 ~

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!

Central and PICC lines

I don't even know where to start with this one!!

Well for those that do not know I am on a saline drip at home to keep my blood volume up. Well at first we had a picc line and we were just going to leave it alone until it was at the end of its life span which is between  months and a year. This is what my surgeon told me your docs may say differently. Well a couple weeks ago we had notices blisters under my statlock. Home Care was NOT helpful, so Momma (we are now calling her Wonder Woman) did what she could with it. So come labor day I was laying in bed and I noticed a yellow looking color on my dressing no wear NEAR where the line goes in, I scratch at it couldn't figure out if it was coffee i had spilled on it OR it was inside the dressing. So Wonder Woman does what any GOOD nurse would do, take the dressing off because its now contaminated. We get it off and I have butterfly shaped blister drainage under my arm. She does what any good ICU nurse would do and I hope any nurse would do and she puts gauze that is STERILE under it, over it, taped it, again keeping it STERILE, checked for line infections, then she said we have to be super careful or we could pull the line. I give her this look like me be careful? have you met me? I am rough, and clumsy! So she taped and secured the lumens! The next day I called Superman! (yes i love super hereo's) They of course said you need to be sent to Interventional Radiology where you got it has to come out and since Wonder Woman already talked to him about Central Lines we opted to get one put in...

So last Friday I had a central line put in. Or a tunneled line, I am sure other places have different names for them. Before surgery they talked to me about a port, but I did not qualify for one because I frequently use my line. I was under local for the procedure and for me since I have so many allergies they had a crash cart in the room and ready to go. Surprisingly this didn't make me nervous it actually relaxed me. They of course explained the procedure and cleaned me up. So what they did was tunneled a line under my skin it starts right around my arm pit and goes up to my collar bone and then the tubing itself goes into my juggler. They stitched the lumens in place and of course watched me for a reaction. I did develop a rash laster that day. I am still healing but doing very well.

Not all POTS patients need lines or ports or even saline. Although some of us do, the volume from the saline drip has really helped give me my life back and has made me less symptomatic when it comes to POTS. My arm has been a bit sore and I can't raise my arm over my head for a month. In the long run it will be helpful and worth it. Now to get my rash to go away and we will be ok! :-D