Advocate

Recently as most of you know, I was admitted into a hospital a couple hours away from home. No one knew me there accept for Beth and Momma. And not many knew or know about POTS. Except for ONE RT that has a relative with my disease process. I had a staph infection in my line which my body did what it's suppose to FIGHT. Well with a fever comes dehydration. With being very sick comes dehydration. With POTS we are more likely to dehydrate faster. Of course I heard "POTS does not exist." Which of course I then feel like a cat in a corner being picked on. It's a matter of time before I snap. I know I should not. However after hours of "please call my doctor at home" One tends to get angry.

Wonder Woman, was of course and as always was at my defense. Please just listen to her and call her physician. You can't care for her like a normal patient. Also all my medications were pulled. My salt, potassium, inhalers, and mag! I was asking for all these. I was asking for breathing treatments, saline, all to hear "no." How can you pull my medications for a chronic illness, they are not whats making me sick. Then they'd come and tell me my levels were low - to dangerously low. Which my reply was fulling of sarcasm. My blood pressure was a bit high because I was having an asthma attack and had to beg for breathing treatments. I was told I was OK even though you can hear me breathe. Which I am use to all this and since I was to sick to fight it, I let wonder woman take over. Beth to! They had call 4 times for breathing treatments and they wanted to give me mag pills... Anyways! I finally get up stairs. Which is where my journey gets much easier.

My nurse that night was fabulous, she helped me get set, helped my Momma get set. Helped me with coffee, got me what we both needed. I did not get to see much of her but she did what she could to make me comortable. She also let Wonder Woman stay with me to help advocate for allergies and POTS. Also help me get up and down when needed. Being a fall risk means I need constant help. The day nurse was great to. My room mate was leaving, so of course the scare of chemicals came into play. She made sure no one cleaned the room, and she also helped me with food allergies. She seen 5 cases like me and knew how serious it can get and is. She was also filled with great stories and bonded with and Momma. She also helped defend me to the doctors and get my chronic meds back!

Food service. I am sure waiting for complaints, because of how I get treated back home. However, they were angels sent from heaven. I have never received such great care. I would say "they" but SHE helped me greatly, I guess we will call her Super girl (yes i love superhereo's). She made sure every dish she served me was safe, nothing was cross contaminated. I ate comfortably with out worry. Which is HUGE for me. I had the most beautiful fruit trays and salads. Options for vinegars. They are on FB, instagram, and I do believe Poppets FB. They were gorgeous! She got to thinking and asked her manager what other options I could have do to food allergies! I ended up with eggs, carrot sticks, hummus with pretzels, tea, coffee, and they were going to make bread but I was leaving that day. She made my stay there wonderful! I was so excited to see her on a daily basis!!

Being admitted away from was a scary and joyful process. I am so glad to be home and thankful for the friends i made!

Love yall
~Poppet!

Superman to the rescue!

As most know I was going to a teaching hospital for blood work. We (Me and Beth) left early enough to find out where everything was at. I am sure both our Momma's were shocked at this event. This not something we often do. I get to hematology and they basically said what i pretty much need a pulmologist O.o I traveled a couple hours to hear this?!? Oh well at least we had this really cool to place to shop! Got the cutest hair pieces haha. Well later that night it all went down hill from there. WAY down hill.

I woke up in the middle of the night as I always do, freezing. I got up and almost passed out it was an immediate get back into bed and lay down type thing. After getting very sick and laughing about it (yes we did laugh at all this) we decided lets lay down and get some rest. Not much later we were on are way to the ER i was burning up and freezing short of breath. I have severe asthma, so this could have been bad and i used my neb. So beth got in the car and to the ER. The triage nurse told me I am OK i am pink with 100 SATs. OK not normal for a couple reasons in me. One i was flushed not pink huge difference. My norm SATs max at 96 oh and if you can HEAR someone breathe there is OBVIOUSLY a problem. Then i told her how sick I was and i was dehydrated. "You can't be dehydrated from throwing up once"  I told her nicely I have POTS I live with chronic dehydration and chronic saline. "There's no such thing as POTS" O.o THEN i was informed a temp of 98 is NOT a fever. I told her what my norm was and it went up a degree since earlier. She rolled her eyes at me and took me back. Met with doc, and not long later i am get 2 liters of fluids. Ran at the same time. I've also had over 12 liters Since i've been here.

So another Doc see's me and cancel's all my Chronic Meds my temps now over 100 and their fighting my alllergies, wasn;t let me have albuteral as needed, would NOT call my doctor, and of course started the all in your head thing. I can not begin to explain how this erks my every last nerve. So I do what I do best. Yes thats right call Superman. He told me to tell the Doc to page him. So I did just that 6 hours later "he was to busy to call my doc" with rationalization "we have your records" Um do to POTS and my asthma I need a special care he KNOWS how to treat me. If you do not have time to properly care for your patient pass me off. So to get him to call Superman, I told him I wanted transfered back home to my hospital with my doctor so I receive proper care. Then he asked me why I would to leave here to go back home no one ever ask to be transfered they asked to be trasnfered in. Yep I let him have it. I got my doctor to call Superman and I got my proper care!

Then I got my offical diagnosis this AM I have a blood infection. Yes my blood is infected! Of course this egotistical doctors are like its a good thing you were close enough to come HERE. Um I would have gone to the ER back home to! I am on some heavy antibiotics and doing fine. Can't wait to be back home with doctors that truly care! I am so tired of these docs here its so ridiculous! I get so frusterated when I know my health and I advocate for myself and get pushed down and told I am full of. Momma had to drop LAWS to get him even so much as listen to me. It should not be that way, Doctors should listen to us. Some of us know about our health!

Well I must be off! I need to convince them to pull the leads!
Love Yall
Poppet!

Snow!

It's snowing! Been pretty idol all day as in playing video games. Triggered a coughing fit watching Grandma let Dog Dog out. I can not have contact with her but she is SO happy it's snowing. Me and Rube's we hibernate. Snow makes me awfully dizzy so I figured I'd start preparing for my trip with the bestie.

I am sure the hotel thinks I am crazy! I did research on the area and ALL the hotels I was looking at before I made my decisions and of course I called a few places. The place we are staying at according to the reviews it has a basement. Evidently they do not have one, they of course you have to request a fridge for the IVs. The place I really wanted to stay that looked so amazing and was only in that area, well it had "beds infested with bugs." Which turned me away very fast! Last thing we need to do is come home with bed bugs... Then another one had a moldy perfume smell to it. Needless to say there has been a LOT of thought going into these trip.

I am nervous to go up there, I learned recently that fog makes it impossible to breathe and make me super dizzy. I live close to cost so, I am use to sea level atmosphere. So a few questions come up that currently can't be answered. Will the different location affect my POTS? Different atmosphere, less oxygen, different elevation... I've read it can affect but not sure. But otherwise I am SO going to enjoy my trip!!

I also had a trip to a local university. If you follow me on facebook I am sure you seen a few post about it. Wonder Woman as yall know is a nurse, she's also an instructor and allowed me to talk to her class! I for see many wonderful nurses in the future. I was able to talk to them about POTS and how some patients differ from the norm. I also got to talk to them about my life and my experiences with nurse at hospitals. I have some off beat and wonderful experiences in the hospital. I am so thankful the students were very interactive and made me feel very welcome.

They got to listen to all my crazy stories about my life in the hospital. What I have been through the good the bad and the ugly. Wonder Woman also spoke on the importance of allergens in medicine and in many other places in the hospital.

I am truly blessed to have spoke to future nurses. Looking forward to going back to. Dr. Dean wants me to set up an power point for the next time I go in.

I guess I should be off here for a bit,
Love Yall
~Poppet

All In Your Head

Recently I was in a car accident. Nothing serious just someone ran into the back of me at a stop light. So of course I had to get my truck fixed. My bumper was dented, hanging off, and my truck was driving weird. So I take it in and told the guy Hey it was running weird, it feels like my breaks are sleeping. I had someone drive it and talk 2 different smart people about this, and the cop told me to get the under neath checked out anyways. The guy looked at me and was like its more then like OK most people think there is more wrong then what is there when they get in a car accident. Its in their heads and nothing is really wrong. My look said it all, he goes I will drive it to make sure but pretty sure its OK. This hit a nerve in me... Why? Because I heard this for two years before I got a true diagnosis of POTS. I got my truck back this past week, I missed my baby, however not the point of this blog. You know what the guy said when I got my girl back? (yes i am one those lol) There was something wrong, we had to align your breaks enough to make it drive able. Of course my look said it all again...

I do a lot of research in my spare time, since I am still not cleared to work and bearly have school clearance. All of us have the same complaint. We hear all to often that is all on our head and there is nothing really wrong with us. We are psych patients, and we need to get help their. Yes some POTS patients have anxiety attacks but its not due to stress of every day life it has to do with norepinephrine not being reabsorbed properly. So its physilogical problem not an emotional problem. Or, there IS something wrong. I know I personally have an altered EKG. Due to bad lungs, I am more likely to have issues with my heart. And when I am sick i can be symptomatic and a HR of 110, instead of 150 which was AWFUL. But even then those doctors were telling me nothing was wrong, thankful then I was daignosed and Momma knew the nurses in the ICU and got to tell them what needs to be done. Yes even after we are diagnosed under care of doctors the question still comes up "Are you sure its POTS and your not just crazy?" Yes please say this to me while I am a high dose of steroids... :-D!

I also remember, my PCP knowing what POTS is told me because other patients she cares for is not as sick I am, that i must be crazy and if i continue with my treatment i'd die. I of course tell her off walk out of her office call my Momma and Mrs Angie (my then home health nurse) and they set the doctor strait very fast. The last thing anyone wants to hear is that they are going to die espically when that is SO unlikely and comepltely unheard of. I did hours of research to make sure I was not going to die. Turns out of course I am not but she also suggested that I need to see mental health. All the time I had 2 doctors, I really need to get a team name for Supermans group of doctors, telling me it really is POTS.

Really its NOT all is the POTS patients head. It's about getting doctors that understand what dysautonomia is. Which sometimes is harder then anything else. I am very nervous to meet my Doc at the university because what is she doesn't know what dysautnomia is and i have to sit and go through the fight all over even though I am just up there for my blood clotting issues. However I will enjoy my time up there.

Till next time,
Love yall
Poppet~

Little Update

Yes I know it's been awhile... What can I say... Other then i've been busy busy and I have a super short attention span. I don't even know where to being at this point.

Not to long ago I found out I was going to a teaching hospital (sadly its not Duke) and before I even had the chance to enlist a person to accompany me the bestie offered to go with me! Which made me and Wonder Woman feel so much better. She is always super busy at work and then she has me, and it's the not so smart to let me go on a road trip by myself. AND this is my FIRST road trip fully diagnosed with POTS and on treatment for POTS, oh and I have a TON of allergies and my heart doesn't alway behave itself. This is also my first road trip with her so it's going to be so much fun! I think she's going to have a car full of medical equipment but that is ok! Then we also have to find a hotel that does NOT allow smoking in rooms what so ever, and a safe place to eat which is next to impossible. I have so many allergies!

I have also learned that when placing abeslom (my central line) at an angle so its not under my arm kinks the line and you can't get a return (get blood off it). We really seriously thought something was wrong with it and we need to get it fixed, which means replacing the tube. But Wonder Woman as always works a miracle and we can a return off of it. Which was a huge sigh of relief. I do not like relying on people every moment of the day. I am fully capable of caring for myself. But limit use of your right hand leads to asking for help!

If you follow me I'm sure you know I have the worse lungs ever. My lungs have finally been deemed stable! yes!!! as long as i stay away from triggers which I am pretty good at doing. Some times its harder then other but hey as long as I am doing better I will do my best to avoid triggers. I don't want to be back in the hospital. As for my heart? Well its been doing OK. It messed up a couple days ago but its been doing OK. Thankfully, there are days it makes me so tired cause it gets so fast but then I just lay down with the kitten. Its really just my POTS acting up and there's nothing we can do with it cause of the asthma. I'm not going to complain though especially when I actually do have good days. :-). I can also handle the rapid heart rate as long as it doesn't go over 130!

I guess I best get off here and go bug wonder woman. She did just get me the cutest skull shirt! :-D

Love yall!!
Poppet~

Visitors!

I guess this is going to be more of a personal post then an educational post. More a view of what I deal with sometimes? Yeah i guess that would be accurate.

It's Christmas Eve I am sitting here watching Star Trek with my Kitten Rubes now all peaceful. She's the most darling little thing when she sleeps. Today wasn't all that calm... My uncle came by today and he hasn't seen my in a year (he lives close enough to) and the things he had said and someone that lives with me has said were just so hurtful. I was thankful when someone came in from a smokey house and I could run to my room and recluse.

I was talking about my goals in life, and when you hear me talk about my dreams you would never believe for a day that I was sick. I want to be a surgeon and I am so blessed to have a doctor in my life to guide me to my dreams. In health and dreams. He's really has earned the name super man. Alls I heard was why try? You can't do that? You will never end up at Duke! Why not? "Cause your sick" And your point? I do think there is a genius running around in a wheel chair so why can't i be a doctor with a medical condition? This just a blast on me to. Then my allergies came up... I am NOT sensitive at all about my allergies and can take a few jokes but when someone tells you "why does it matter if you eat with us when I can't eat what they cook anyways" This is our Christmas dinner. That I shouldn't even bother to show up at because I have food allergies.

I also heard for a good hour why I should just stop trying because i have POTS. POTS or any disease for that mater is not a reason to give up. It's not a reason to throw in the bag and so i am done with life. I was not built to give up and break down. I am built to fight threw to other end and look at the bright and positive side. I have doctors willing to make me better to live a life that i want to. No way would I let them down.

I also found out today I am just the girl with a disease. Thats what I am seen as. I am more then just a girl with a disease. SO MUCH MORE. I am proud kittie momma, a Chef, striving to be an MD Physicist, a gym rat, and an artist. I live to see people smile and love spending time with my friends and of course video games. I love life and coffee and cake! There is SO much more to me then some disease. Just take the time to look past the IVs, the inhalers, the hospitalizations. I am human I have feelings and I am not suppose to cry cause it can make me terribly sick but I broke down and texted Momma and let her know what was going on.

Broken hearted? Sometimes. But my spirit will never be broken!

I am wishing everyone a very merry Christmas!!
Love Yall
Poppet~

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 ~