Last night I received a text last night. A link to the song "waiting for superman" by Daughtry. Superman is my favorite super hero (why my pulmogist has that name). So I of courses listened to it. Its more so a love song, but my friend told me it reminded her of me. Confused by this I asked "why?" She replied "because I am sure some days you just want to escape." Of course my reply is always "I am use to it..." but it made me think (never a good thing). We all get comfortable with a certain amount of discomfort.
Not many people are use to constant chest pain, a PICC line, or lungs filled with mucus. Or a disease that can not be treated because it can be very dangerous. You often here doctors tell you, "we treat you based on the fact that your treatment outways the side effect of the medication." Not in this case. I am not one to sit and complain about my symptoms unless some one is in the need to know. I live with constant pain in my chest and lungs, constantly tired, and with an itchy rash that welts when scratched. This is my normal base line, but to others its something they wish they could take away. I wish we or they could. But since they can't they sit and watch and do what they can to make it better. Me personally I sit with the kitten, write on here, and just relax. It does make it better. But it doesn't make it less painful for them!
Have any of you ever seen Star Trek?? The advanced medicine in the beginning of the second part?? Where the blood of Kahn saved a dieing child's life? (yes I am that geeky girl that adores sci fi. But scientist see movies like this and go how can i make this real. And it can put my life into perspective at time watching it. Though a wonderful movie, my first thoughts were 1. "why can't hospital beds be that cool" 2. "when are we gonna start making movements for more research and more cures."
But Tyson (the cat) is wanting to watch avengers with me and steal my stylus. So I am gonna hop of here.
Love yall!
~Poppet!
Thursday, September 26, 2013
Sunday, August 18, 2013
not POTS
Yes I still do have POTS, not what the title is about. I see a cardiologist regularly because we do not treat my tachycardia. I am sure most of you with POTS are confused. It's because treatment for tachycardia can kill me. I have lung disease with life threatening asthma, and would not even try a beta blocker, calcium channel blocker, or any of the sort in the ICU. So we monitor my heart closely...
... Well since February I have had many issues with my heart. Increased shortness of breath, my heart was gurgling (literally gurgling like you gurgle water), i have a new heart murmur. I am sure my lovely super hero nurses are going "uh oh" like poor Wonder Woman. Though she's never heard of heart gurgling before, so i googled it before cardio appointment and almost cried seeing what i saw. Mitral valve prolapse, endocarditis... SCARY stuff right there. Both of those affect the valves in the heart, one you have bacteria in your heart. So my lovely cardio doc, immediately schedules an echo to be done.
After a week of freaking out cause cardio thought what i researched. The echo did come back abnormal. Right to Left sided shunt, with a density change in my heart. Erg. I am still awating test scheduling and my nerves our on edge.
Well I am gonna hop off here. I have a game to yell at. lol (chef game with improper techniques) and a wonder woman to bother! (we might have more matching tattoo's soon!! yes!!)
Okies
Love yall
~Poppet
... Well since February I have had many issues with my heart. Increased shortness of breath, my heart was gurgling (literally gurgling like you gurgle water), i have a new heart murmur. I am sure my lovely super hero nurses are going "uh oh" like poor Wonder Woman. Though she's never heard of heart gurgling before, so i googled it before cardio appointment and almost cried seeing what i saw. Mitral valve prolapse, endocarditis... SCARY stuff right there. Both of those affect the valves in the heart, one you have bacteria in your heart. So my lovely cardio doc, immediately schedules an echo to be done.
After a week of freaking out cause cardio thought what i researched. The echo did come back abnormal. Right to Left sided shunt, with a density change in my heart. Erg. I am still awating test scheduling and my nerves our on edge.
Well I am gonna hop off here. I have a game to yell at. lol (chef game with improper techniques) and a wonder woman to bother! (we might have more matching tattoo's soon!! yes!!)
Okies
Love yall
~Poppet
Tuesday, July 30, 2013
Tattoo's and llfe
I know most people do not agree with tattoo's or yell me because I have a disease and I got a new tattoo. Let me start by saying: I had physician's approval before getting a tattoo. I told Superman after he saw my old one, I want another one but Wonder Woman says no because of my health. He told as long as they are not in easy bleed areas I was more then allowed to get one. Second: I had a nurse monitoring me the entire time. That knows how to pick up on physical signs I am a struggling. I went thru the tattoo fine! (tunneled lines hurt way worse the chest tattoos). Third: Though most do not agree with getting tattoo's this is my emotional way of healing. This is a piece of art that represents my battle no more no less. Please no negative comments about my tattoo/life choices.
If you see the post before this. Wonder Woman and I got matching tattoo's, I came up with the design and she got it put on her foot with my name under it... Yes that's right Crissie is my real name. I go by Poppet cause a very lovely and wonderful friend of mine calls me that. As for the tattoo.There is as always a story behind it. Though I will not go much in depth, because I do not talk about my ICU visit much at all. It has everything to do with that. It was a battle of life and death, my eyes tear up every time I think of that night that turned into a week. But Wonder Woman put being my Momma aside and did what she had to do to help keep me alive. She did what most nurses do as well, tell a doctor what needs to be ordered! lol Thankfully she new my entire staff! Both of the EKGs on me and her are my own. Its where I started to wear I am now. Even though I look like a normal person I have an awful heart and awful lungs. On top of my dysautonomia (pots). I think to myself many times this disease they call dysautonomia would be a bit easier if it wasn't for those 2 disease on top of this one. I do have more then just POTS. Though its what I normally talk about because it's such a pain its the reason why my kidney's, eyes, digestion, and my heart rate. But there is more to my personal health then just that.
Though most people think I am a healthy person because of how I look! Which drives me nuts...
Dysautonomia is hard disease to battle. Not many people believe in it. There is not much research, which makes the disease a pain to treat. There is very few medications that they prescribe for it and most have a lengthy medical history of not working at all. Most will tell you Saline is there favorite. I will tell you this as well. It's what makes me feel the best. With out things get bad! I want to the farm last week or the week before. I was out there for 15 minutes and I felt awful but just wrote it off as asthma because i was short of breath. I wound up at target afterwards was sitting on the floor looking at makeup remover stood up slowly and almost collapsed. Came home connected up and within a half of bag i was fine!
Well I guess this is long enough haha
Off to Wonderland
Love
Poppet~
If you see the post before this. Wonder Woman and I got matching tattoo's, I came up with the design and she got it put on her foot with my name under it... Yes that's right Crissie is my real name. I go by Poppet cause a very lovely and wonderful friend of mine calls me that. As for the tattoo.There is as always a story behind it. Though I will not go much in depth, because I do not talk about my ICU visit much at all. It has everything to do with that. It was a battle of life and death, my eyes tear up every time I think of that night that turned into a week. But Wonder Woman put being my Momma aside and did what she had to do to help keep me alive. She did what most nurses do as well, tell a doctor what needs to be ordered! lol Thankfully she new my entire staff! Both of the EKGs on me and her are my own. Its where I started to wear I am now. Even though I look like a normal person I have an awful heart and awful lungs. On top of my dysautonomia (pots). I think to myself many times this disease they call dysautonomia would be a bit easier if it wasn't for those 2 disease on top of this one. I do have more then just POTS. Though its what I normally talk about because it's such a pain its the reason why my kidney's, eyes, digestion, and my heart rate. But there is more to my personal health then just that.
Though most people think I am a healthy person because of how I look! Which drives me nuts...
Dysautonomia is hard disease to battle. Not many people believe in it. There is not much research, which makes the disease a pain to treat. There is very few medications that they prescribe for it and most have a lengthy medical history of not working at all. Most will tell you Saline is there favorite. I will tell you this as well. It's what makes me feel the best. With out things get bad! I want to the farm last week or the week before. I was out there for 15 minutes and I felt awful but just wrote it off as asthma because i was short of breath. I wound up at target afterwards was sitting on the floor looking at makeup remover stood up slowly and almost collapsed. Came home connected up and within a half of bag i was fine!
Well I guess this is long enough haha
Off to Wonderland
Love
Poppet~
Thursday, July 25, 2013
Wednesday, June 26, 2013
Myrtle Beach
As I have always said, it is QUITE difficult to travel with POTS. You have your IVs, all your medications. It's very important you take your medication on time or you can become very ill. I took my salt a couple hours late and I thought I was going to fall over. My BP was that low. Of course there is not much warning. Also if your not well hydrate things can end very badly. Passing out, shortness of breath, eratic heart rate you name it. Then sometimes people like to stare! Ugh. However my stay in SC was not like this at all. OK well sometimes it was BUT 90% it was fabulous.
We went to the Hard Rock Cafe for dinner the first night there (and the following 4 days) I felt so bad for the guy. I sat down and had to take care of my IV (he didn't care) and on top of that I was like OK. I am allergic to seafood (fish and shellfish) and milk. On top of that I can not eat meat, my body can't break it down. I told him i normally ate salads, so he made me a custom salad! It was SO good! He got me a yummy safe strawberry smoothie and i promise he filled my water 5 times! We got the cutest pics there to well me and Wonder Woman! When I figure out how to I will post them lol.
The next day we tried to find a tattoo shop! lol OK the one we got to was shady so we decided to wait until we got home to get one. So we saw a Myrtle Beach Harley outlet!! The ladies in there were some of the nicest people I met. They were so accepting with the IV covers, and they listened to my story and were genuinely concerned and cared. This is unheard of where I am from. Most people stuff up their noses to me. They sat and talked to me and Wonder Woman for a good 30 minutes! I was and am so thankful to them for helping me out, talking to me, and not looking down on my because of this crazy disease!
Then a lovely lady at the build a bear, helped us stuff the bears, and I explained my disease to her to. Not sure how the convo came up but she ended up praying for me and for healing of my disease. She was working there thru her church. She sat and talked to us for a few minutes. They were much busier then Harley but could not be more thankful for her to.
Oh and I can't forget the starbucks girl! I seen her 2 days in a row with an IV over my shoulder. And she didn't ignore me, stare or anything! She talked to us about KISS, Coffee, what its like working in a hotel lobby. It's little things like this that make me smile! The 5 of them were/are angels from God in my eyes. I do believe this and this is why.
For breakfast we went down stares to eat. First there wasn't anything safe to eat at all and no one would help us. So I made Wonder Woman eat while I drank coffee and played on FB. And a waiter came over, didn't ask me what I needed, or if she could help. She stared at my IV and what it was then didn't even talk to me. She avoided me at all cost. Gasp! the girl on the IV is contagious! I came down the next day with out it. More so because I woke up at 6 am to start and not worry with it. She treated me as if I was a different person! The 5 listed above treated me like I was a normal person walking in! I can not be more grateful to the Hard Rock, the Harley Girls, Build a Bear, and Starbucks chick! To yall I am forever grateful!
But I guess I should get off here, and EAT! lol Love me some food!
Love Yall!
~Poppet!
We went to the Hard Rock Cafe for dinner the first night there (and the following 4 days) I felt so bad for the guy. I sat down and had to take care of my IV (he didn't care) and on top of that I was like OK. I am allergic to seafood (fish and shellfish) and milk. On top of that I can not eat meat, my body can't break it down. I told him i normally ate salads, so he made me a custom salad! It was SO good! He got me a yummy safe strawberry smoothie and i promise he filled my water 5 times! We got the cutest pics there to well me and Wonder Woman! When I figure out how to I will post them lol.
The next day we tried to find a tattoo shop! lol OK the one we got to was shady so we decided to wait until we got home to get one. So we saw a Myrtle Beach Harley outlet!! The ladies in there were some of the nicest people I met. They were so accepting with the IV covers, and they listened to my story and were genuinely concerned and cared. This is unheard of where I am from. Most people stuff up their noses to me. They sat and talked to me and Wonder Woman for a good 30 minutes! I was and am so thankful to them for helping me out, talking to me, and not looking down on my because of this crazy disease!
Then a lovely lady at the build a bear, helped us stuff the bears, and I explained my disease to her to. Not sure how the convo came up but she ended up praying for me and for healing of my disease. She was working there thru her church. She sat and talked to us for a few minutes. They were much busier then Harley but could not be more thankful for her to.
Oh and I can't forget the starbucks girl! I seen her 2 days in a row with an IV over my shoulder. And she didn't ignore me, stare or anything! She talked to us about KISS, Coffee, what its like working in a hotel lobby. It's little things like this that make me smile! The 5 of them were/are angels from God in my eyes. I do believe this and this is why.
For breakfast we went down stares to eat. First there wasn't anything safe to eat at all and no one would help us. So I made Wonder Woman eat while I drank coffee and played on FB. And a waiter came over, didn't ask me what I needed, or if she could help. She stared at my IV and what it was then didn't even talk to me. She avoided me at all cost. Gasp! the girl on the IV is contagious! I came down the next day with out it. More so because I woke up at 6 am to start and not worry with it. She treated me as if I was a different person! The 5 listed above treated me like I was a normal person walking in! I can not be more grateful to the Hard Rock, the Harley Girls, Build a Bear, and Starbucks chick! To yall I am forever grateful!
But I guess I should get off here, and EAT! lol Love me some food!
Love Yall!
~Poppet!
Sunday, June 23, 2013
ROAD TRIP
It was hard to update being on the road. You stop late, your to tired to even care about the internet, wake early and on the road! IVs and all. 28 hour trip from el paso to the beach in SC. Drove across the entire state of texas and south carolina. Yes I know improper spelling but I am tired after a long day.
Desert heat is awful! I went out side one day to face time Wonder Woman before she left for Texas. I had NO idea it was 90 outside it felt like it was in 70/80s and dehydrated myself! I fixed it the next day though. The heat is so dry I can feel the mucus stick in my lungs. Its just awful but I had a wonderful time with Beth, Mike and Molly! Molly is the sweetest! Puppy kisses every morning. She walked me to the front desk once. It was a 5 minute walk there and back to get coffee which is OK and the girls LOVE her in there and she' welcome. Yeah... That was a mistake. I was SO messed up from the heat, I had to have some start my saline for me! Which is unheard of for me. But its ok it stabled me, Molly laid across the laptop and we got comfy on the couch!
The beach has been a BLAST! I went out on the beach, and walked a bit, went shopping. There's these fancy girlie stores around here. Yeah... you'll find me in the redneck biker stores! lol. Where else does my heart belong? Oh yes on a crab boat lol.
But really, my POTS has been OK on this trip. I only got sick 3 times in Texas, more so because I do not listen and figured the heat wouldn't flare me up. But it did! But once I got stable and use to the environment I was fine. SC, it has been great here. I was only dizzy one day and that's because i took my one dose of salt way to late. I take salt to keep my blood pressure normal.
Well I am tired and see a bag of chips! :-D So I shall hop off of here and eat!
Love yall
~Poppet
Desert heat is awful! I went out side one day to face time Wonder Woman before she left for Texas. I had NO idea it was 90 outside it felt like it was in 70/80s and dehydrated myself! I fixed it the next day though. The heat is so dry I can feel the mucus stick in my lungs. Its just awful but I had a wonderful time with Beth, Mike and Molly! Molly is the sweetest! Puppy kisses every morning. She walked me to the front desk once. It was a 5 minute walk there and back to get coffee which is OK and the girls LOVE her in there and she' welcome. Yeah... That was a mistake. I was SO messed up from the heat, I had to have some start my saline for me! Which is unheard of for me. But its ok it stabled me, Molly laid across the laptop and we got comfy on the couch!
The beach has been a BLAST! I went out on the beach, and walked a bit, went shopping. There's these fancy girlie stores around here. Yeah... you'll find me in the redneck biker stores! lol. Where else does my heart belong? Oh yes on a crab boat lol.
But really, my POTS has been OK on this trip. I only got sick 3 times in Texas, more so because I do not listen and figured the heat wouldn't flare me up. But it did! But once I got stable and use to the environment I was fine. SC, it has been great here. I was only dizzy one day and that's because i took my one dose of salt way to late. I take salt to keep my blood pressure normal.
Well I am tired and see a bag of chips! :-D So I shall hop off of here and eat!
Love yall
~Poppet
Thursday, June 13, 2013
coffee at 11pm
lol yes thats right at 11pm :-) I sure did need some. I even got a nap today. I am still on VA time and up by like 7. I have been fighting with home health since the 10th (when we hit texas) and they are trying to tell my doctor I do not have insurance when I do. I just lost ONE insurance (i had 2). So Superman was kind enough to just talk to Wonder Woman and she's handle it all on her end. What a crazy life I lead.
I had 3 liters of fluid today, I was doing 2 and my POTS seems OK. It also likes the caffiene in the coffee for some reason it eases the chest pain in me. I get chest pain from have a constant heart rate of 120 or higher. And speaking a lot here, tend to raise my heart rate. I talk to my best friend and Molly the doggie. Oh and we cant forget the endless phone calls to Wonder Woman either. My POTS once again is stable just in time for my lungs to be like. I do not like this air let me fill with mucus :-/ the good thing is i can hang over the side of the couch after a breathing treatment and get puppie kisses while my lungs drain which seems to help out a LOT. I also have access to my steroids (prescribed for this reason) which also tends to help with POTS because of water retention. Though we all know Superman is not human in the comic strip, I am still leaning towards he is not human in real life either. lol He is never wrong. "Your going to have to up your meds in Texas" I am all haha yeah right, its going to be an AC apartment. Yeah well standing in a door way for 5 mins, to let the pup out had me dehydrated i had open my fluids at higher rate to catch up. But over all I still look good! I am maintaining my 87 lbs which means i have not lost any water weight to the point of sever dehydration, or heart rhythyms that get me put in the hospital.
I have only ran into ONE other issue. A 2 hour time difference. I keep telling Wonder Woman "i'll call you right back" and its oh 9 there. I almost texted here now going oh i need you to get my atrovent before you leave. Yeah it would be 1am there and well that would start that panic in her, when its no need to panic at all. It's just crazy lol.
What else am I forgetting... If you follow me you know I have trouble with brusing. They thought it was blood disorder but its vascular and I am not willing to go through more testing its POTS, but I am covered in bruises I have them everywhere my chest, my legs, my arms, and my knees! I look like I have been beat up! I have lines across my legs wear my iPad sits. I think it might be made worse due to heparin solution i am puting in my line who knows though haha
I had 3 liters of fluid today, I was doing 2 and my POTS seems OK. It also likes the caffiene in the coffee for some reason it eases the chest pain in me. I get chest pain from have a constant heart rate of 120 or higher. And speaking a lot here, tend to raise my heart rate. I talk to my best friend and Molly the doggie. Oh and we cant forget the endless phone calls to Wonder Woman either. My POTS once again is stable just in time for my lungs to be like. I do not like this air let me fill with mucus :-/ the good thing is i can hang over the side of the couch after a breathing treatment and get puppie kisses while my lungs drain which seems to help out a LOT. I also have access to my steroids (prescribed for this reason) which also tends to help with POTS because of water retention. Though we all know Superman is not human in the comic strip, I am still leaning towards he is not human in real life either. lol He is never wrong. "Your going to have to up your meds in Texas" I am all haha yeah right, its going to be an AC apartment. Yeah well standing in a door way for 5 mins, to let the pup out had me dehydrated i had open my fluids at higher rate to catch up. But over all I still look good! I am maintaining my 87 lbs which means i have not lost any water weight to the point of sever dehydration, or heart rhythyms that get me put in the hospital.
I have only ran into ONE other issue. A 2 hour time difference. I keep telling Wonder Woman "i'll call you right back" and its oh 9 there. I almost texted here now going oh i need you to get my atrovent before you leave. Yeah it would be 1am there and well that would start that panic in her, when its no need to panic at all. It's just crazy lol.
What else am I forgetting... If you follow me you know I have trouble with brusing. They thought it was blood disorder but its vascular and I am not willing to go through more testing its POTS, but I am covered in bruises I have them everywhere my chest, my legs, my arms, and my knees! I look like I have been beat up! I have lines across my legs wear my iPad sits. I think it might be made worse due to heparin solution i am puting in my line who knows though haha
Wednesday, June 12, 2013
I must say, Texas is an experience! I walk to the front desk daily (which isn't far) to get coffee. They don't have a coffee pot here cause it broke haha but its so worth it the walk because its starbucks and its free lol. So anyways. The walk there I get short of breath but sit down when I get in there. Which is fine I can handle that. That's when its oh only in the 80's then the temp gets to the 100s. I swear the AC runs continusouly. I keep doing what they call a bolus of saline. I am currently running 1 liter bags because home health messed everything up. And I went to let Molly out. I was standing in the front door of the house and had to up my saline for an hour to "wide open" which means it goes in a fast a gravity allows then an hour later i turn it back down. I was only in the door for a couple minutes. It's SO hot. Have you ever been baking something, and had to open the door to check on it and you get an overwhelming amount of heat in your face? Yeah that's the best way to describe it! SO hot. But its so fry my asthma is HAPPY.
I have no idea what I did to my poor lungs because they are filled with mucus. Sorry gross I know. And I have spoken with Superman today, and so has Wonder Woman. But this is so normal for me, that unless its a companied by a fever he will say oh well its OK we really can't do anything about as long as it is moving. But I actually feel OK. In GA, I would walk outside and the air would be so thick I could not take a breath in, in Tx it's so hot my bodies like hahah now we're going to dehydrate you! lol. No its really not funny but there is no happy medium. But please no I am stable, above my base line even. I have succesfully stayed stable every day. I am allowed up to 5 liters of fluid in day, and been stable at 2. I also have been breaking the liter bags up. I do feel odd not connecting 24 hours a day but its a nice feeling at the same time. Knowing I get the same amount of fluid but spread out thru out the day. I also have consumed so much water it's insane. I down bottle after bottle after bottle... you get it haha.
Also traveling with a disease is not as easy as one would thing it is. I actually lost weight through out the trip, it does not show thankfully. I have way to many food allergies so I am limited to what I can eat on the road, which is what I bring from home. I have to travel with ALL medications. Control, rescue, refills. IV bags are not easy to compact either. And i have to change a lot of this on the road. It gets so complex. We made it work.
I'll keep yall updated on how things work out.
Love Yall
Poppet
Monday, June 10, 2013
The journey!
It has been a long 3 days! I wanted to up date daily, but I fully thought I'd be able to have internet at all my locations. That was not how it worked haha but I had a wonderful trip here. We stopped at Beth's family lake house or cabin. It was so wonderful. We drove through the hurricane/tropical storm that was coming up and it beat up my lungs a bit but it was work with able it was nothing serious at all. My POTS was stable as long as i was not focused out side but on a game or a book. Which check out Robin Cook books haha i mean he's AWESOME.
I was decent through alabama and Louisiana to then we hit Texas. I didn't have many problems in Dallas with my POTS/Asthma maybe it was because it was so late when we got there. And we stayed at a very nice hotel (thanks Dad C.) It was very lovely I will try to remember to post pics later. Then about an hour past Dallas... The heat became very dry and not humid. My lungs loved it... My POTS. Oh Gosh, it was like open a 450 oven with your face in it. But it was like stepping into it. I was on my saline, lots of water and an AC care and I was still dehydrating! I would get out of her car and get extremely dizzy and i was in a fog until I got cooled down again. Superman warned me about this so I was prepared. I am starting to think he's a Vulcan and not human. I had very little to eat thru out the trip, well when i was or well beth was driving. Cause of food allergies. :-( I have multiple so its hard to eat out in general. But I am so excited I am here and I am SO tired so I will update more later :-)
Love Yall
~Poppet
I was decent through alabama and Louisiana to then we hit Texas. I didn't have many problems in Dallas with my POTS/Asthma maybe it was because it was so late when we got there. And we stayed at a very nice hotel (thanks Dad C.) It was very lovely I will try to remember to post pics later. Then about an hour past Dallas... The heat became very dry and not humid. My lungs loved it... My POTS. Oh Gosh, it was like open a 450 oven with your face in it. But it was like stepping into it. I was on my saline, lots of water and an AC care and I was still dehydrating! I would get out of her car and get extremely dizzy and i was in a fog until I got cooled down again. Superman warned me about this so I was prepared. I am starting to think he's a Vulcan and not human. I had very little to eat thru out the trip, well when i was or well beth was driving. Cause of food allergies. :-( I have multiple so its hard to eat out in general. But I am so excited I am here and I am SO tired so I will update more later :-)
Love Yall
~Poppet
Monday, June 3, 2013
Vacation!
Please note: I have medical clearance to go on vacation, I am also required to contact my doctor while I am gone. That being said...
I am currently getting ready to take my vacation! Less then a week and I will have my birthday with my best friend!!! Like I did last year except this year I will not be in the hospital, in tears, with nursing sticking up for me. True story lol. Last year for my birthday before 7am and just coming of steroids a young arrogent doctor came into my room and talked to me like I was a child and had no education and was down right rude. I burst into tears, set off my monitor and I explained to my nurse why I was crying. She yelled at the doctor and then surprised with a stuffed lab, balloons, and a card signed by the entire cardiac unit! I still have all of it, the dog frequent the hospitals and card is on my door the balloons are on my duckie pin board. Later on Beth decided to surprise me with cupcakes! lol She is the one that is taking the trip with me, she has been thru a lot with me but anyways before I get caught rambling.
I am getting ready for vacation which is no easy task for someone like me. Not only do I have POTS, but I have asthma with lung disease. If you do not know POTS highly affects the heart, especially mine. My heart has done some crazy things and when there is stress on the lung the heart has a tendency to freak out. My Cardiologist has expressed how bad he feels for me if that tells you how my health goes. So the trip takes a lot of thought, is the place I will be staying safe? What about the trip down? Where do we eat? (food allergies) Control IVs must stay call. What about medical supplies? This is just the begin.
I have to pack everything. Extra dressing kits, extra bags, extra supplies for my IV itself, batteries, plugs, emergency bags and tubing, nebulizers, control med's and anything medical wise I could possibly need. I am to the point of carrying extra epi! I have an expired one. Yes I do know expired do not always work as well, but I'd rather have an extra set laying about then worried about running out finding a local pharmacy that I use. Oh and hotels? Do they allow smoking? Do they have fridges for IVs? The one's I am staying at do not allowing smoke and have a fridge but I had to call and make sure of this. Then food? I must make sure I travel with adequate food. Oh and to make things even MORE interesting. I am heat sensitive going to Texas (why i am being followed by a doctor) I slightly feel bad for my friend. Though she knows "act and not react." This is the statement I tell people of what to do in an emergency situation. Nothing crazier then going into anaphylaxis and calming down someone when you need help yourself. "Act" get me benadryl, prednisone, and then epi. Call Wonder Woman as your getting me to the hospital or calling 911. Then you can react to the situation.
Im also going to be gone for a bit so I must remember to take absolutely everything! I can't forget a THING. I will be about a 3 day trip from home! And anything can go wrong, I am sure Wonder Woman is going to lose her mind! lol On the bright side of things she is meeting me there and we are vacationing the way home and stopping by the KISS cafe! I am every excited!
I am praying for a wonderful and safe vacation. And that God does protect us through out the trip and keeps us all safe.
I will be up dating this thru out my trip!
Until then
Love Yall
Poppet~
I am currently getting ready to take my vacation! Less then a week and I will have my birthday with my best friend!!! Like I did last year except this year I will not be in the hospital, in tears, with nursing sticking up for me. True story lol. Last year for my birthday before 7am and just coming of steroids a young arrogent doctor came into my room and talked to me like I was a child and had no education and was down right rude. I burst into tears, set off my monitor and I explained to my nurse why I was crying. She yelled at the doctor and then surprised with a stuffed lab, balloons, and a card signed by the entire cardiac unit! I still have all of it, the dog frequent the hospitals and card is on my door the balloons are on my duckie pin board. Later on Beth decided to surprise me with cupcakes! lol She is the one that is taking the trip with me, she has been thru a lot with me but anyways before I get caught rambling.
I am getting ready for vacation which is no easy task for someone like me. Not only do I have POTS, but I have asthma with lung disease. If you do not know POTS highly affects the heart, especially mine. My heart has done some crazy things and when there is stress on the lung the heart has a tendency to freak out. My Cardiologist has expressed how bad he feels for me if that tells you how my health goes. So the trip takes a lot of thought, is the place I will be staying safe? What about the trip down? Where do we eat? (food allergies) Control IVs must stay call. What about medical supplies? This is just the begin.
I have to pack everything. Extra dressing kits, extra bags, extra supplies for my IV itself, batteries, plugs, emergency bags and tubing, nebulizers, control med's and anything medical wise I could possibly need. I am to the point of carrying extra epi! I have an expired one. Yes I do know expired do not always work as well, but I'd rather have an extra set laying about then worried about running out finding a local pharmacy that I use. Oh and hotels? Do they allow smoking? Do they have fridges for IVs? The one's I am staying at do not allowing smoke and have a fridge but I had to call and make sure of this. Then food? I must make sure I travel with adequate food. Oh and to make things even MORE interesting. I am heat sensitive going to Texas (why i am being followed by a doctor) I slightly feel bad for my friend. Though she knows "act and not react." This is the statement I tell people of what to do in an emergency situation. Nothing crazier then going into anaphylaxis and calming down someone when you need help yourself. "Act" get me benadryl, prednisone, and then epi. Call Wonder Woman as your getting me to the hospital or calling 911. Then you can react to the situation.
Im also going to be gone for a bit so I must remember to take absolutely everything! I can't forget a THING. I will be about a 3 day trip from home! And anything can go wrong, I am sure Wonder Woman is going to lose her mind! lol On the bright side of things she is meeting me there and we are vacationing the way home and stopping by the KISS cafe! I am every excited!
I am praying for a wonderful and safe vacation. And that God does protect us through out the trip and keeps us all safe.
I will be up dating this thru out my trip!
Until then
Love Yall
Poppet~
Friday, May 3, 2013
A lot has happened this past week, or over really.
I was getting a test set up, with a doctor that really is not familiar with POTS. I found my IV is the rest of my life. So you know what this means? I need to get a back pack other then just black to rock! I also found out my lung disease is pretty crappy. Which I never talk about on her but will sorta fill ya in though. I guess I was suppose to be informed of this already but I wasn't, thankfully PICCs aren't that hard to live with, though I want my tunneled back. Fashion was a bit easier with that Abeslom. Yep he's named! Though I did make some fabulous PICC covers which I will soon be selling.
PICCs are very hard but easy to travel with. As for flying, with a doctors note most air lines are required to let you travel with your IVs. Considering it is medically necessary. Honestly I'd rather just drive. I feel its less to worry about. Which I did get permission to travel this summer. VERY strict guidelines, but after my journey! This is very deserving. Guidelines you ask?? Can't leave the house during the day. I am going to be in the desert. YES the desert with POTS. I have to contact Superman daily, and I also have to travel with ect saline. Which was a pain in the butt to get, but its well worth it. I am excited! I am trying to talk Wonder Woman into driving out to "pick me up" and stop at a beach on the way back. Yes a beach with a PICC, with proper precautions I am sure it will be OK. I will tape everything I can. I do not go in the water so it will work out.
As for my lungs. I am sure yall are curious. My lungs like to fill with a thick sticky mucus. It causes, pain, shortness of breath, my heart to do some crazy things. I wheeze, and cough. Not to mention all the awful triggers I have. I have lung disease with asthma. But when my lungs fill with mucus my hard rate spikes, and I get a fever. So it makes my POTS trigger. This is also why I am on IV treatment and not beta blockers, calcium channel blockers, and midodrin. Cardiology says "i do what superman says" he really says this! Superman says do not let anyone give you anything for your heart. Superman is the one that had me diagnosed with POTS, and picked up on it. I adore that doctor. He works miracles. I swear he does. Though I can't say he likes home health very much. We finally got my lungs treated properly and have greatly lowered my heart rate. I had a wonderful ER staff help me!
Well I guess I must go, Cheshire just appeared in the movie and we all know how wonderful Chesh is!!
Love Yal
~Poppet
I was getting a test set up, with a doctor that really is not familiar with POTS. I found my IV is the rest of my life. So you know what this means? I need to get a back pack other then just black to rock! I also found out my lung disease is pretty crappy. Which I never talk about on her but will sorta fill ya in though. I guess I was suppose to be informed of this already but I wasn't, thankfully PICCs aren't that hard to live with, though I want my tunneled back. Fashion was a bit easier with that Abeslom. Yep he's named! Though I did make some fabulous PICC covers which I will soon be selling.
PICCs are very hard but easy to travel with. As for flying, with a doctors note most air lines are required to let you travel with your IVs. Considering it is medically necessary. Honestly I'd rather just drive. I feel its less to worry about. Which I did get permission to travel this summer. VERY strict guidelines, but after my journey! This is very deserving. Guidelines you ask?? Can't leave the house during the day. I am going to be in the desert. YES the desert with POTS. I have to contact Superman daily, and I also have to travel with ect saline. Which was a pain in the butt to get, but its well worth it. I am excited! I am trying to talk Wonder Woman into driving out to "pick me up" and stop at a beach on the way back. Yes a beach with a PICC, with proper precautions I am sure it will be OK. I will tape everything I can. I do not go in the water so it will work out.
As for my lungs. I am sure yall are curious. My lungs like to fill with a thick sticky mucus. It causes, pain, shortness of breath, my heart to do some crazy things. I wheeze, and cough. Not to mention all the awful triggers I have. I have lung disease with asthma. But when my lungs fill with mucus my hard rate spikes, and I get a fever. So it makes my POTS trigger. This is also why I am on IV treatment and not beta blockers, calcium channel blockers, and midodrin. Cardiology says "i do what superman says" he really says this! Superman says do not let anyone give you anything for your heart. Superman is the one that had me diagnosed with POTS, and picked up on it. I adore that doctor. He works miracles. I swear he does. Though I can't say he likes home health very much. We finally got my lungs treated properly and have greatly lowered my heart rate. I had a wonderful ER staff help me!
Well I guess I must go, Cheshire just appeared in the movie and we all know how wonderful Chesh is!!
Love Yal
~Poppet
Wednesday, March 27, 2013
Almost a year
I can't believe its been almost a year since i have started IV treatment for POTS. Although its been a rough year. So far I have survived and have received part of my life back! I do not know where I would be with out this treatment! Admitted all the time? Frail? Bad lungs or well worse lungs? A bad heart? Not on the verge of going back to school. I'm so thankful to be blessed with treatment!
I am sure your wondering what IV treatment I get. I get normal saline in my IV at home. What saline does for certain POTS patients is help keep them hydrated. Most POTS patient wants they reach the point of dehydration they tend to become symptomatic. Which usually translates into a rapid heart rate, sometimes i go into an off heart rhythm (dysrhythmia), become short of breath, black out, pass out, and in me it triggers off my asthma. Staying hydrated is VITAL for a patients with POTS. With my saline i still drink so much water its ridiculuous. But I am not going to complain when I have most of my life back. I remember when I had Sepsis within the 5 day stay i had received almost 30 liters if not more. I had such a high fever they couldn't keep me hydrated. They also discontinued all my meds so that did not help. It also put my blood pressure in thes 70s! NOT good!! I have had it lower so i was not worried at all. The doctors were in a state or worry and I'm like um what? Its YOUR fault.
I've had a rough journey with home health. Well not them to be honest the system I am with has been great. Wonderful angels that have been brought into my life. But with my PICCs, I had a horrid reaction to one, i had sepsis in the other, and so far this one has been OK. Which I am thankful for. I am super paranoid since the sepsis has been recent, now I am at risk for sepsis again. So its been a battle. Buts its a battle worth fighting, and I know this war is not over. It will be a long road but its really is worth fighting. I couldn't imagine not having this life. A semi-active life with over protective people trying to keep me safe. All of us work together as a team to keep me out of the hospital.
I have lost many people along the way. But I have gained a few to. I have gained people who I can't imagine living with out. Near and far. I have been blessed with truly amazing people in my life. Some I met on farmville (hush), some i have met in hospitals, and some have been there all a long. Life has amazing ways of working things out but is so worth it. And through God's grace I have survived this long road.
I must get going I promised Wonder Woman dinner. I am telling you once a Chef always a Chef!
Chef Poppet signing out :-)
Love yall
~Poppet!
I am sure your wondering what IV treatment I get. I get normal saline in my IV at home. What saline does for certain POTS patients is help keep them hydrated. Most POTS patient wants they reach the point of dehydration they tend to become symptomatic. Which usually translates into a rapid heart rate, sometimes i go into an off heart rhythm (dysrhythmia), become short of breath, black out, pass out, and in me it triggers off my asthma. Staying hydrated is VITAL for a patients with POTS. With my saline i still drink so much water its ridiculuous. But I am not going to complain when I have most of my life back. I remember when I had Sepsis within the 5 day stay i had received almost 30 liters if not more. I had such a high fever they couldn't keep me hydrated. They also discontinued all my meds so that did not help. It also put my blood pressure in thes 70s! NOT good!! I have had it lower so i was not worried at all. The doctors were in a state or worry and I'm like um what? Its YOUR fault.
I've had a rough journey with home health. Well not them to be honest the system I am with has been great. Wonderful angels that have been brought into my life. But with my PICCs, I had a horrid reaction to one, i had sepsis in the other, and so far this one has been OK. Which I am thankful for. I am super paranoid since the sepsis has been recent, now I am at risk for sepsis again. So its been a battle. Buts its a battle worth fighting, and I know this war is not over. It will be a long road but its really is worth fighting. I couldn't imagine not having this life. A semi-active life with over protective people trying to keep me safe. All of us work together as a team to keep me out of the hospital.
I have lost many people along the way. But I have gained a few to. I have gained people who I can't imagine living with out. Near and far. I have been blessed with truly amazing people in my life. Some I met on farmville (hush), some i have met in hospitals, and some have been there all a long. Life has amazing ways of working things out but is so worth it. And through God's grace I have survived this long road.
I must get going I promised Wonder Woman dinner. I am telling you once a Chef always a Chef!
Chef Poppet signing out :-)
Love yall
~Poppet!
Friday, March 8, 2013
What i wish people understood.
Things that I wish people knew, if not understood. Chronic illnesses has taught me many things, some only people that live with a disease will know or understand. Some people understand out of love and compassion. They are 1 in a million however one would not be more blessed to have them in their life. I know I am! Before I ramble like always here are things that i wish people understood or knew.
It's not that I don't want to: Because the reality is I do want to. I really do. However, I must choose between life and death. Or living in or out of the hospital. I often to get yelled at, put down, or walked out on. I wish they would know, I am literally waying my odds. Is what I am about to do going to put me in the hospital or kill me? If the answer is yes to one of them I am not going to hang out or be apart of it. If a person truly loves you, they will support you and say I understand what are you able to do.
I never asked for this disease. I can see the looks on your faces thru the screen "you got to be kidding me." No I am really not. Many times people blame things happening on me when its out of my control. Oh you got admitted again won't you ever learn not to put your health at risk. Your sick again!? Why didn't you strengthen your immune system? In bed again? Stop being lazy! Why did you put yourself in harms way?! I have never once intentionally put myself in harms way! I don't want to lay in bed all day. My immune system was suppressed for a reason on top of what it naturally is. Yes there are ways to strengthen but we have to way the risks. I do not want this disease. I was giving this life and I am going to take advantage and change the world.
Why can't you just compromise with me? Yes I have been asked this. Refer back to part one. I want to but again. Weighing the odds. If it's not the worth the risk. Why can't you just come over and sit with me?
Can;t you just wait to take your medication until later? No. No I can't. If I am telling you I need to take it, my body is telling me I need to take it.
Why don't you gain some weight it will help stabilize you? You don't think I have tried? I eat constantly, with what is safe for me to consume. I have to disease fighting against me. I constantly struggle with this. My labs read I am OK. And when they do not they are fast to treat. I have the justice league on my side. They are also fast to admit me. What I need is water weight to keep me where I need to be. If I am able to talk to you, I am where I need to be.
I am sure most of you are in awe and can't believe people have said this to me. I hear this often if not constantly. I have almost gotten to the point where I am just want to make a recording or a quick text to send this stuff to people when they start up. However, we take it with Grace. Or, frantic calls to Wonder Woman, freaking out cause I am upset once again.
Please learn to understand people with Chronic Illnesses.
Well I'm off for now.
Love Yall
~Poppet
It's not that I don't want to: Because the reality is I do want to. I really do. However, I must choose between life and death. Or living in or out of the hospital. I often to get yelled at, put down, or walked out on. I wish they would know, I am literally waying my odds. Is what I am about to do going to put me in the hospital or kill me? If the answer is yes to one of them I am not going to hang out or be apart of it. If a person truly loves you, they will support you and say I understand what are you able to do.
I never asked for this disease. I can see the looks on your faces thru the screen "you got to be kidding me." No I am really not. Many times people blame things happening on me when its out of my control. Oh you got admitted again won't you ever learn not to put your health at risk. Your sick again!? Why didn't you strengthen your immune system? In bed again? Stop being lazy! Why did you put yourself in harms way?! I have never once intentionally put myself in harms way! I don't want to lay in bed all day. My immune system was suppressed for a reason on top of what it naturally is. Yes there are ways to strengthen but we have to way the risks. I do not want this disease. I was giving this life and I am going to take advantage and change the world.
Why can't you just compromise with me? Yes I have been asked this. Refer back to part one. I want to but again. Weighing the odds. If it's not the worth the risk. Why can't you just come over and sit with me?
Can;t you just wait to take your medication until later? No. No I can't. If I am telling you I need to take it, my body is telling me I need to take it.
Why don't you gain some weight it will help stabilize you? You don't think I have tried? I eat constantly, with what is safe for me to consume. I have to disease fighting against me. I constantly struggle with this. My labs read I am OK. And when they do not they are fast to treat. I have the justice league on my side. They are also fast to admit me. What I need is water weight to keep me where I need to be. If I am able to talk to you, I am where I need to be.
I am sure most of you are in awe and can't believe people have said this to me. I hear this often if not constantly. I have almost gotten to the point where I am just want to make a recording or a quick text to send this stuff to people when they start up. However, we take it with Grace. Or, frantic calls to Wonder Woman, freaking out cause I am upset once again.
Please learn to understand people with Chronic Illnesses.
Well I'm off for now.
Love Yall
~Poppet
Friday, February 22, 2013
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!
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!
Saturday, February 16, 2013
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!
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!
Friday, January 25, 2013
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
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
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~
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