Hey Yall!!
Oh gosh its been a long time since I have updated this thing, and hope to make a longer post later. As I am currently doing a breathing treatment, it makes realize there is much of my life you have missed out on. I use to have this thing for POT awareness, but that leaves you missing out on my life with my other diseases. My lungs, heart, allergies, and well just my life in general. It can be quite and interesting thing.
My life as always is hectic, always something going on, some battle I am fighting, or just rejoicing in the fact I am alive surrounded by the people I consider my hereos. If yall my twitter, espically my personal one, you always here me talk of them. I can't leave them out anymore either. They have truly been my strength thru the past year!! Always reminding me how beautiful life is in there own ways. From puppy pics, to cat videos, to pics on the water. Crazy phone calls, texts, video chats, and PMs. How can I leave yall out of all that??
Over pizza yesterday I was just telling Wonder Woman, her and Sif, our always a voice of encouragement to fight another day even if they dont realize it. They have always been my inspiration to keep fighting and smiling. Batman who calls me and makes me laugh even when I am on steroids and ready to cry. And all my PMs that are fully of laughs and smiles. The God of Thunder who is never far behind but not always around! <3<3 love them
But have to hop for now
Love yall
Poppet~
Tuesday, June 3, 2014
Thursday, September 26, 2013
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!
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!
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
Subscribe to:
Posts (Atom)