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
Friday, January 25, 2013
Saturday, January 19, 2013
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~
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~
Tuesday, January 8, 2013
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~
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~
Monday, December 24, 2012
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~
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~
Tuesday, November 27, 2012
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 ~
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 ~
Wednesday, November 21, 2012
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~
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~
Tuesday, October 16, 2012
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~
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~
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