I hope everyone had an awesome holiday. For which ever you celebrate. I know some do not celebrate, my one Gradnam did not due to her religon. So I get all the different faiths.
At the Poppets house, we had a lovely day. Wonder Woman loved her jacket and can not wait to wear it!! Its a black jacket that has a heart stetchascope that has RN in it and her name under it. Not Wonder Woman but her actual name. I almost put Momma on there but everyone said nooo put her name. My aunt got her iPad so i set her up with that and got it all loaded with games and in working fashion, and got Grandmas smart TV setup, after her and Wonder Woman built the stand. lol What I do?? I made vegan fudge the night before so I sat and watched while Iate and enjoyed some coffee. lol I am content and happy just watching people be happy. I love just to sit and watch people smile. Oh and Rubes had her stocking fill with catnip toys and jingly balls and was in heaven!! I didnt even get them off the card board before started playing with them.
As for my health?? It was a bit rough yesterday but I beat Mario Kart so its all good. My POTS was flared so bad!! First time in a long time. It started with my CF though. I was awake around 7am and I could not catch my breath. On oxygen. So I grabbed my inhaler and laid back down with Rubes. We never went back to sleep. Then I got up and my heart was out of rhythym but I mean what else is new. I was playing my game and the room started to crooked and i jumped cause I though the chair was tipping and this was right after I told Wonder Woman my chest had a mild pressure in it, which again normal. She said heat since I had just disconnected and I was just putting off getting up. Right after that I had put heat on my chest and ate a high salt dinner. Tater Tots and Tofu in Orange Sauce (had 8tbsp of soy sauce in it) and was decent the rest of the day. I wish my health took holidays off but that is mean dreaming.
So we all had a really nice holiday!! I helped my aunt all day with her iPad, watched movies with Wonder Woman and ate fudge!! YUM. I also got to catch up with some wonderful friends that made a point to come out and see me as well as some family. So blessed to have people in my life that "get it." Hope everyone had a blessed and wonderful day. I also hope every day is just as blessed.
Love Yall
~Poppet
Friday, December 26, 2014
Thursday, December 18, 2014
Educate yourself
This morning, while doing treatment I was checking my FB. And in a friends post they said my health problems were all due to food allergies. What was said exactly really and honestly hurt my feelings how it was said. I sent it to my friends and called Wonder Woman and asked if I was wrong for my feelings and my thoughts on food allergies were right. The only thing they can do to you is kill you?? She confirmed that yes, that is true, and food allergies can not cause health related issues. Then I had to realize these are people that know NOTHING about my health. I am OK with that. My health is common knowledge but not public knowledge. I keep my identity off here for a reason. I do not post my health on FaceBook for a reason. I get a lot of back lash and harassment for my diseases.
Which made me think of this blog post.
ALL of my diseases are unrelated to each other. I just got dealt a bad had and I have chosen to play it like I was dealt a Royal Flush. Keep my mouth shut, unless I know you care about me. Live my life with grace and dignity.
I have defined my health so many times on here. So. Many. Times. I have no idea what else to say about all this. The internet can tell all of this unrelated and NOT contagious. My health is genetic. Meaning its been passed down from my family.
Each disease has greatly affected my life. POTS and MCAD do not even bother me. They are under control. When I have a flare they are easily treatable. Sometimes I have to go in for help but normally I got all this at home. Usually strung out on benadryl but home. CF is slowly destroying my life but it will not defeat me.
POTS is a form of dysautonomia. Dysfunction of the autonomic nervous system, and some research says its a form of neurogenic heart disease. Basically my nervous system beats my heart up, it also affects my kidneys as well in me personally. There are many many many symptoms of POTS. I deal with quite of a few but those are the major ones. I am treated thru a Saline drip, and a very strict diet. I use exercise therapy when I can (my lungs determine this). BUT this is NOT caused by food allergies and food allergies does NOT cause POTS.
MCAD is an allergic disease. It's called Mast Cell Activation Disease. My mast cells burst prematurely causing an anaphylactic reaction. Now this in me does cause my food allergies, but you do not have to have MCAD to have food allergies. Food allergies are a completely unrelated topic for most people. In me?? Not so much. Anything can cause me to have a reaction, I do everything within my power not have a reaction but well thats not always the case. I am dealing with the disease now due to stress from watching someone I care for go thru so much. But read back a few post to update yourself on that.
CF. Cystic Fibrosi also has NOTHING to do with food allergies. Its the worse of the three for me. Its slowly destroying my lungs and weight. I do not absorb food well, I do not digest it well either. It is a genetic disease that effects my lungs, liver, kidneys, heart, and digestive system. It is not based on food allergies. It does not trigger any sort of allergic reaction. It's just a very mean disease that destroys your body.
These are what affects my health. Not food allergies. Before you say anything about ANYONE, whether they have a disease or not, think about what you would want people to say about you. Think about how you feel when you are put out and put down.
Love Y'all
~Poppet
Which made me think of this blog post.
ALL of my diseases are unrelated to each other. I just got dealt a bad had and I have chosen to play it like I was dealt a Royal Flush. Keep my mouth shut, unless I know you care about me. Live my life with grace and dignity.
I have defined my health so many times on here. So. Many. Times. I have no idea what else to say about all this. The internet can tell all of this unrelated and NOT contagious. My health is genetic. Meaning its been passed down from my family.
Each disease has greatly affected my life. POTS and MCAD do not even bother me. They are under control. When I have a flare they are easily treatable. Sometimes I have to go in for help but normally I got all this at home. Usually strung out on benadryl but home. CF is slowly destroying my life but it will not defeat me.
POTS is a form of dysautonomia. Dysfunction of the autonomic nervous system, and some research says its a form of neurogenic heart disease. Basically my nervous system beats my heart up, it also affects my kidneys as well in me personally. There are many many many symptoms of POTS. I deal with quite of a few but those are the major ones. I am treated thru a Saline drip, and a very strict diet. I use exercise therapy when I can (my lungs determine this). BUT this is NOT caused by food allergies and food allergies does NOT cause POTS.
MCAD is an allergic disease. It's called Mast Cell Activation Disease. My mast cells burst prematurely causing an anaphylactic reaction. Now this in me does cause my food allergies, but you do not have to have MCAD to have food allergies. Food allergies are a completely unrelated topic for most people. In me?? Not so much. Anything can cause me to have a reaction, I do everything within my power not have a reaction but well thats not always the case. I am dealing with the disease now due to stress from watching someone I care for go thru so much. But read back a few post to update yourself on that.
CF. Cystic Fibrosi also has NOTHING to do with food allergies. Its the worse of the three for me. Its slowly destroying my lungs and weight. I do not absorb food well, I do not digest it well either. It is a genetic disease that effects my lungs, liver, kidneys, heart, and digestive system. It is not based on food allergies. It does not trigger any sort of allergic reaction. It's just a very mean disease that destroys your body.
These are what affects my health. Not food allergies. Before you say anything about ANYONE, whether they have a disease or not, think about what you would want people to say about you. Think about how you feel when you are put out and put down.
Love Y'all
~Poppet
Tuesday, December 16, 2014
I hate Wal-Mart
Saturday or Sunday me and Wonder Woman decided to go Christmas shopping. I can post details since she knows what she's getting and doesn't follow my blog.
So we started at Best Buy are favorite store. We were gonna get Grandma a blu ray player. Well we started looking around and I had the TV she uses since I was 13/14 so its pretty old and a blu ray just would not connect to the TV, so we started looking at TVs. Well TVs are expensive and I got the brilliant idea that we should get her a smart TV!! Shes been wanting a smaller TV forever and I was like you know we might as just get her this. She hates that gigantic TV and she wants Netflix so lets do this and we did.
Well there was one problem and we had no where to set this TV on. The old TV stand was moved into my room which highly utilized. I am talk stereo, meds, clothes, and hats. So there was no option of moving it out. So we decided we'd get her a stand for it. Well we started at Target. Which is my favorite store ever. They have "safe" makeup. Well parts of it can use. So I was looking for a TV stand and makeup... We couldn't find anything that was decently priced and really nice. Target had a poor selection which upset me. But I got movies while I was there so it evened out. The original Willy Wonka and Space Jam!! OK so we are on a mission and i am like I hate to say this but Wal-Mart. I HATE Wal-Mart with a passion. So we break and go after much discussion. Back to hate Wal-Mart
So I walk in and immediately feel awful and my oxygen is on. Walk further back, hit the makeup section and the brand i want isn't there and walk strait back to the TV stands. By this time we had only been there 10 minutes or so. I am coughing and wheezing and I tell Wonder Woman. My lungs are filled with fluid, I used my inhaler got what I needed and went to check out. It was getting bad so I went outside while she paid and was much better. Or so I thought...
Well my lungs were so bad by the time I got home, i needed oxygen on 3 (not good), benadryl every 4 hours and a lot, double dose of albuteral, extra chest PT of 4 kinds, steroids, and I was struggling to the point, I was not allowed to carry my Ipad. Wonder Woman did my IV, she cooked my dinner, and put me to bed. It was THAT bad. I am still on oxygen at 3, benadryl, and steroids. I am still getting 4 types of chest PT. I am so sick from that stupid store. Amongst the stores I can't go in!! lol
The good news?? Grandma loves her gift (i live with her).
Love Yall
~Popept
So we started at Best Buy are favorite store. We were gonna get Grandma a blu ray player. Well we started looking around and I had the TV she uses since I was 13/14 so its pretty old and a blu ray just would not connect to the TV, so we started looking at TVs. Well TVs are expensive and I got the brilliant idea that we should get her a smart TV!! Shes been wanting a smaller TV forever and I was like you know we might as just get her this. She hates that gigantic TV and she wants Netflix so lets do this and we did.
Well there was one problem and we had no where to set this TV on. The old TV stand was moved into my room which highly utilized. I am talk stereo, meds, clothes, and hats. So there was no option of moving it out. So we decided we'd get her a stand for it. Well we started at Target. Which is my favorite store ever. They have "safe" makeup. Well parts of it can use. So I was looking for a TV stand and makeup... We couldn't find anything that was decently priced and really nice. Target had a poor selection which upset me. But I got movies while I was there so it evened out. The original Willy Wonka and Space Jam!! OK so we are on a mission and i am like I hate to say this but Wal-Mart. I HATE Wal-Mart with a passion. So we break and go after much discussion. Back to hate Wal-Mart
So I walk in and immediately feel awful and my oxygen is on. Walk further back, hit the makeup section and the brand i want isn't there and walk strait back to the TV stands. By this time we had only been there 10 minutes or so. I am coughing and wheezing and I tell Wonder Woman. My lungs are filled with fluid, I used my inhaler got what I needed and went to check out. It was getting bad so I went outside while she paid and was much better. Or so I thought...
Well my lungs were so bad by the time I got home, i needed oxygen on 3 (not good), benadryl every 4 hours and a lot, double dose of albuteral, extra chest PT of 4 kinds, steroids, and I was struggling to the point, I was not allowed to carry my Ipad. Wonder Woman did my IV, she cooked my dinner, and put me to bed. It was THAT bad. I am still on oxygen at 3, benadryl, and steroids. I am still getting 4 types of chest PT. I am so sick from that stupid store. Amongst the stores I can't go in!! lol
The good news?? Grandma loves her gift (i live with her).
Love Yall
~Popept
Wednesday, December 10, 2014
Nurses
I always here some very harsh things about nurses. Which to me it's heart breaking and nerve racking. "You have a nurse as a Mom she doesn't baby you??" "Nurses just educate it's the doctors." "She's just a nurse she has time." They constantly think nurses are there just to be a made and nothing more. Thats the must un true and demeaning thing to say to a nurse. No I am not a nurse. I am the daughter of one, and a friend to many." Also, there have been SO many times a nurse out smarted the doctor, saved my life, then cried with me.
Nurse's are there to comfort you when you got the worse news of your life. They pick up the pieces of what the doctors just did, and they make sure all the meds you have are proper and not counter acting your symptoms. They make sure doctors do not prescribe the wrong things or miss something.
They are there to save your life when your body is shutting down, or you had a "hold my beer watch this " moment. They assess you. They here what you are saying and what your not saying. They are the first to run to your side in a crisis and the last to leave you.
I had many nurses dry my tears while they are working on me. They held my hand for hours or braided my hair after the biggest crisis i ever had just to get it out of the tape. They have called doctors on my behalf, they defended me, and have been my biggest advocate so they can see me walk out the hospital. Holding my hand while I try to walk with poor lung function to keep me up and moving. Fixed every mistake I have made with my healthy and helped me learn ways to not make the same mistake again.
Nurses are the one's many patients not just myself have shared so much sorrow and joy with. I have many stories when it comes to nurses, from my point of view and others. Nurses are the heart beat of the hospital, we depend on them in many different ways as patients and family of patients. I have been comforted over losses and comforted over bad news.
Nurses are blessings, they are angels, and they are hero's. They sacrifice everything to care for you. To care for me. Remember that next time you need them.
Love Y'all
~Poppet
Nurse's are there to comfort you when you got the worse news of your life. They pick up the pieces of what the doctors just did, and they make sure all the meds you have are proper and not counter acting your symptoms. They make sure doctors do not prescribe the wrong things or miss something.
They are there to save your life when your body is shutting down, or you had a "hold my beer watch this " moment. They assess you. They here what you are saying and what your not saying. They are the first to run to your side in a crisis and the last to leave you.
I had many nurses dry my tears while they are working on me. They held my hand for hours or braided my hair after the biggest crisis i ever had just to get it out of the tape. They have called doctors on my behalf, they defended me, and have been my biggest advocate so they can see me walk out the hospital. Holding my hand while I try to walk with poor lung function to keep me up and moving. Fixed every mistake I have made with my healthy and helped me learn ways to not make the same mistake again.
Nurses are the one's many patients not just myself have shared so much sorrow and joy with. I have many stories when it comes to nurses, from my point of view and others. Nurses are the heart beat of the hospital, we depend on them in many different ways as patients and family of patients. I have been comforted over losses and comforted over bad news.
Nurses are blessings, they are angels, and they are hero's. They sacrifice everything to care for you. To care for me. Remember that next time you need them.
Love Y'all
~Poppet
Tuesday, December 9, 2014
Seize the day
So I finally found enzymes i can take!! I have to say they are a huge blessing, i just need more for meals, there enough for snacks but my doctor didn't want to over whelm my system all at once. But I can't tell you how awesome they are!! Strange what works at times. I got to eat food I hadn't eaten in YEARS. Food that i am not allergic to that just made me sick. It also helps me not bloat when I eat at meals to. Which I am more then ecstatic for. I never thought this would be possible!! I can get healthy... I can do this.
But on to more important things.
I recently got some terrible news. Now about me. But I went to tell someone else and I just broke down which is horrid for my poor lungs, the person that gave me the news told me, I was not allowed to cry and that God told her she'd be OK and she would be. I just stopped and cried some more, but not for their pain but their hope and their faith. I am not even going to pretend this situation is OK. Nor am I going to go in-depth with all this, but what it made me realize, you attitude is everything.
So often we mope in self pity, we cry for what we lost, what we can't do, and we dwell on all this. We fail to see the hope of the future and we go into a situation thinking of all the things that can go wrong. We fail to see the what blessing we truly get from al this. I was raised in a religious house hold and we were taught and told to give it all to God. But its not so often I see people actually do this, and they are an incredible example on how to deal with such devastating news.
I can't say I hate me disease because with out I would not be who I am. I would know how truly beautiful and wonderful life is. I would not know what a gift today is and how to truly love everything that comes my way. I have been put in a position where I can talk to young people, and I can talk to people my age as well. I can show them what life truly means. God does not give us troubles and disease to let eat away at us but to guide us where we need to go.
Yes diseases are devastating, some times bad news can destroy your entire world, but we also need to stop and see what life is trying to teach us. We need to let people know we love them, we need to spend today doing what nee to be done and not putting off unto some one else. There is good in every situation we just need to find.
Love Y'all
~Poppet
But on to more important things.
I recently got some terrible news. Now about me. But I went to tell someone else and I just broke down which is horrid for my poor lungs, the person that gave me the news told me, I was not allowed to cry and that God told her she'd be OK and she would be. I just stopped and cried some more, but not for their pain but their hope and their faith. I am not even going to pretend this situation is OK. Nor am I going to go in-depth with all this, but what it made me realize, you attitude is everything.
So often we mope in self pity, we cry for what we lost, what we can't do, and we dwell on all this. We fail to see the hope of the future and we go into a situation thinking of all the things that can go wrong. We fail to see the what blessing we truly get from al this. I was raised in a religious house hold and we were taught and told to give it all to God. But its not so often I see people actually do this, and they are an incredible example on how to deal with such devastating news.
I can't say I hate me disease because with out I would not be who I am. I would know how truly beautiful and wonderful life is. I would not know what a gift today is and how to truly love everything that comes my way. I have been put in a position where I can talk to young people, and I can talk to people my age as well. I can show them what life truly means. God does not give us troubles and disease to let eat away at us but to guide us where we need to go.
Yes diseases are devastating, some times bad news can destroy your entire world, but we also need to stop and see what life is trying to teach us. We need to let people know we love them, we need to spend today doing what nee to be done and not putting off unto some one else. There is good in every situation we just need to find.
Love Y'all
~Poppet
Wednesday, December 3, 2014
Life gets crazy at times.
I had a nasty bug in my lungs as y'all know, and theres been a lot going on around here, and for once in my life I am not sure how to handle it. I can handle my health with grace but when it comes to others i care for, I handle it only a bit better then I handle Dog Dog. So not well. Espically if they are a huge part of my life.
Well, yesterday morning I got a phone call to update while I was getting ready and I broke down. Which they assured me that they were OK, and it should not be serious at all. I of course always assume the worse but it's what I do. I told them that I know how to handle my health with grace, i just can't handle this situation at all. It's quite difficult, it is someone I have come to depend on just to help me function some days. Then we got on the subject of the ICU, 2 years ago, when the All Father told me if he had to do it all over he would have still had me. I was a mess, and was apologizing for being a bad daughter and have this awful disease that I never asked for. Wonder Woman didn't know this had all happened and she assured me to that if we had all this to do over she still had me to because I am destined for greatness. She was trying to calm me down, because if anything so much as happened to the person I was upset bout, everything might fall a part, who will help me, who will take care of someone else. As always she assured me, we can handle it all. It's what we are bred for. To take on a life most people can't handle and make it work and make it function as smoothly as possible. Some days I just don't understand. Other days I know exactly what needs to be done. But we get thru it all the time.
As for me?? I am doing OK, I have been battling an infection. I am pretty sure it is gone, now I am battling the weather. Needless to say I have taking a beating from all this. But I will get better. I have not been able to exercise in a long because of these silly lungs. But I am bound and determined to get better and get back on that machine so I can stay healthy.
But I must get off here
Love Y'all
~Poppet
I had a nasty bug in my lungs as y'all know, and theres been a lot going on around here, and for once in my life I am not sure how to handle it. I can handle my health with grace but when it comes to others i care for, I handle it only a bit better then I handle Dog Dog. So not well. Espically if they are a huge part of my life.
Well, yesterday morning I got a phone call to update while I was getting ready and I broke down. Which they assured me that they were OK, and it should not be serious at all. I of course always assume the worse but it's what I do. I told them that I know how to handle my health with grace, i just can't handle this situation at all. It's quite difficult, it is someone I have come to depend on just to help me function some days. Then we got on the subject of the ICU, 2 years ago, when the All Father told me if he had to do it all over he would have still had me. I was a mess, and was apologizing for being a bad daughter and have this awful disease that I never asked for. Wonder Woman didn't know this had all happened and she assured me to that if we had all this to do over she still had me to because I am destined for greatness. She was trying to calm me down, because if anything so much as happened to the person I was upset bout, everything might fall a part, who will help me, who will take care of someone else. As always she assured me, we can handle it all. It's what we are bred for. To take on a life most people can't handle and make it work and make it function as smoothly as possible. Some days I just don't understand. Other days I know exactly what needs to be done. But we get thru it all the time.
As for me?? I am doing OK, I have been battling an infection. I am pretty sure it is gone, now I am battling the weather. Needless to say I have taking a beating from all this. But I will get better. I have not been able to exercise in a long because of these silly lungs. But I am bound and determined to get better and get back on that machine so I can stay healthy.
But I must get off here
Love Y'all
~Poppet
Monday, December 1, 2014
Encourage others
Being so sick, I get a lot of time to watch TV and Movies. Which made me think. Woman who are chronically ill seem to be victimized. For once I just want a sick girl to play a role of an ultimate bad ass. She fights for whats right, she fights for what she loves, she pushes back at her disease, she fights for schooling and the career she wants. She gives the man a run for his money as she knows she deserves the best. We are not victims of a disease, no one is, man, woman or child. We are people with souls that deserve the same respect as other people.
I have noticed in real life to, we are pushed aside as week. We are looked down upon and shamed. But I never see anyone fight back. I have a bad habit of finding them in the store coughing and clearing my lungs. Oh yeah obnoxious and gross but it gets my point across. Its makeup that makes me look healthy, its lipstick that covers my pail lips and nail polish that covers my purple nails. You can look at me however you want to though, take pity or not. I will show you I am just a strong and capable as other people and will not allow myself to be pushed around or looked down upon. I have been learning to take this a bit more gracefully and not obnoxiously.
Just a little pet peeve of mine haha, I also want young people to know, or those recently diagnosed, fight back against your disease, your circumstances. Your disease is not your identity, you are a heart and a soul. Do what you love, be who you want to be, think outside of the little box society has put around us and let them know you can do great things. Change the world and change how people see us. There will be days when laying in bed is the best we can do, and that is OK. We all need a break, we all need time to rest, we all need time to grieve, and we all need a moment to recharge. But never let that setback stop you from getting up and fighting back.
Love Y'all,
~Poppet
I have noticed in real life to, we are pushed aside as week. We are looked down upon and shamed. But I never see anyone fight back. I have a bad habit of finding them in the store coughing and clearing my lungs. Oh yeah obnoxious and gross but it gets my point across. Its makeup that makes me look healthy, its lipstick that covers my pail lips and nail polish that covers my purple nails. You can look at me however you want to though, take pity or not. I will show you I am just a strong and capable as other people and will not allow myself to be pushed around or looked down upon. I have been learning to take this a bit more gracefully and not obnoxiously.
Just a little pet peeve of mine haha, I also want young people to know, or those recently diagnosed, fight back against your disease, your circumstances. Your disease is not your identity, you are a heart and a soul. Do what you love, be who you want to be, think outside of the little box society has put around us and let them know you can do great things. Change the world and change how people see us. There will be days when laying in bed is the best we can do, and that is OK. We all need a break, we all need time to rest, we all need time to grieve, and we all need a moment to recharge. But never let that setback stop you from getting up and fighting back.
Love Y'all,
~Poppet
Subscribe to:
Posts (Atom)