Life has been insane lately. I have been battling the lungs as I always do, and I have also been part time nurse. Which I was just put back into full time Chef postition today. lol I am a Chef but profession, though I just work out of my home I really have not had any time to truly cook recently. I have been sick or taking care of a post op patient. Then my lungs were pretty junkie this week more so then normal. I am sure I posted Rubes was monitoring my breathing the one night.
So today the person I have been helping looked at me and goes "i do not know how you do it." Well the reality is I had no choice but to deal. With that I had one of two options. Let it make me miserable or learn to accept it. So why be miserable?? It takes just as much time and energy as being happy. Now yes there are days I call Wonder Woman and even Batman and go I want it out, it hurts, it itches, I want it gone. Knowing me well enough they always remind me to take benadryl and go to bed lol. Tomorrow will come and enough benadryl will make it better.
But the reality is there is no choice in it, you learn to cope, you learn to get use to it. This is how I cope with my diseases, I put all my feelings and issues on here. I try not to sugar coat my life so people get the gist of what my life is really like at times. It's not a glamours life but it is my life. I do what I can with what I got. I also know God has given me what I can handle and in ways being chronically ill is a blessing. I have learned to appreciate the small stuff as have some people around me. They know how awesome it is for me when I paint my nails, paint my face, get out of the house, and travel. I can't travel as often as I like but I have with a nurse or well Wonder Woman though she counts as a nurse (sorry).
Not just my life but everyone's life can get tough. We just really have to take the time step back and ask God what are you trying to teach me. Cry it out, put on your red lipstick and favorite shoes (my happens to be boots) and just make the best of it. Hard as it can be its what we have to do. This can apply to my followers who are not Christian and are rolling you eyes at me if you have made it this far.
But I am gonna hop off here as I have a cat glaring from her perch
Love Yall
~Poppet
Thursday, January 29, 2015
Tuesday, January 27, 2015
Rough Night
Last night was plain out awful. One of those nights I lay awake and curse that I was blessed (which in ways I was) with this crap of a disease. I got no sleep last night, I was in God awful can't sleep and nautious pain. My cat monitored my breathing type of night. No sleep at all take benadryl to function type of night. Yes it was that bad.
I felt bad for my poor cat who stayed by my side all night. I was up at 2am saw the snow and curesed that to. Bad weather always means I am going to have a roough time. But gosh I can not remember the last time I had that rough of a night. Then it was the first snow fall with out Dog Dog. Then I was broken hearted all over again. It hasn't been that long but gosh do i miss her. She loved the snow. Then I remember how much she taught me. We lead a similar life. Allergies and just love to be care free and have fun. Even when she got sick she wanted to be loved on and brought me toys. Off topic I know.
Last night was just awful and I spent most of the day on oxygen. I haven't eaten much either it just takes to much energy. I hate say that but I am just so tired, and so weak. I just want to collapse into me bed and call it a night. Weather will do this to you though. Dizzy, can't breathe, lungs are full, my BP is low... I woke up and called Wonder Woman just to vent. But.
Days like these or even long sleepless nights in pain, make me so greatful for the good days, the days of going to work and teaching, the days of cooking to my heart content, getting out of the house, doing my makeup, curling my hair. These are things that I am so thankful I can still do when i want to and my health allows. We need the bad days to truly appreciate the little thinsg in life. There is so much I wanted to do today. I wanted to paint my face, do my nails, wash my hair, and I really really want some fresh cookies. But today, I got out of bed. I ate and I am proud that I can still do that. Some people honestly can not. As much as I want to curl my hair, paint my nails or even my face there is always tomorrow. I am not going to be healthy, the bad days will one day be more frequent. So when I can finally sit down and paint my face I will make sure I can enjoy it that much more. Because we are truly blessed to be able to do something so small.
Till next time.
~Poppet
I felt bad for my poor cat who stayed by my side all night. I was up at 2am saw the snow and curesed that to. Bad weather always means I am going to have a roough time. But gosh I can not remember the last time I had that rough of a night. Then it was the first snow fall with out Dog Dog. Then I was broken hearted all over again. It hasn't been that long but gosh do i miss her. She loved the snow. Then I remember how much she taught me. We lead a similar life. Allergies and just love to be care free and have fun. Even when she got sick she wanted to be loved on and brought me toys. Off topic I know.
Last night was just awful and I spent most of the day on oxygen. I haven't eaten much either it just takes to much energy. I hate say that but I am just so tired, and so weak. I just want to collapse into me bed and call it a night. Weather will do this to you though. Dizzy, can't breathe, lungs are full, my BP is low... I woke up and called Wonder Woman just to vent. But.
Days like these or even long sleepless nights in pain, make me so greatful for the good days, the days of going to work and teaching, the days of cooking to my heart content, getting out of the house, doing my makeup, curling my hair. These are things that I am so thankful I can still do when i want to and my health allows. We need the bad days to truly appreciate the little thinsg in life. There is so much I wanted to do today. I wanted to paint my face, do my nails, wash my hair, and I really really want some fresh cookies. But today, I got out of bed. I ate and I am proud that I can still do that. Some people honestly can not. As much as I want to curl my hair, paint my nails or even my face there is always tomorrow. I am not going to be healthy, the bad days will one day be more frequent. So when I can finally sit down and paint my face I will make sure I can enjoy it that much more. Because we are truly blessed to be able to do something so small.
Till next time.
~Poppet
Friday, January 23, 2015
I can't say much of anything has been going on. Though I did try to help Wonder Woman make my bed.
I have a day bed, and its in a corner backed up against the wall, crawling and lifting things with a PICC line let alone my heart is a bit much. I have a tiny room with a lot of stuff. So she was doing the sheets and I was doing the pillows, half way thru my heart was racing, it had to be at least hitting 160, I was short of breath, felt completely out of it. It was a work out. I helped!! We made it. We also listened to classic 70s music. LOVED it. lol
Thats what POTS does. It makes the simplest of tasks seem like a full blown work out. Even if your helping someone out. Just putting a pillow in a case it was just way to much. But we got it done and then I lost my heating pad. Its a puppy that you microwave. I just found it after a couple days and it was under my purse in my chair. WHERE IT NEVER IS. I put it up so I wouldn't lose it. What did I do?? Lose it!!
Nothing else has really been going on. I just need to make a lot of phone calls. So I guess I best keep this short and call them while business hours are still open.
Love Y'all
~Poppet
I have a day bed, and its in a corner backed up against the wall, crawling and lifting things with a PICC line let alone my heart is a bit much. I have a tiny room with a lot of stuff. So she was doing the sheets and I was doing the pillows, half way thru my heart was racing, it had to be at least hitting 160, I was short of breath, felt completely out of it. It was a work out. I helped!! We made it. We also listened to classic 70s music. LOVED it. lol
Thats what POTS does. It makes the simplest of tasks seem like a full blown work out. Even if your helping someone out. Just putting a pillow in a case it was just way to much. But we got it done and then I lost my heating pad. Its a puppy that you microwave. I just found it after a couple days and it was under my purse in my chair. WHERE IT NEVER IS. I put it up so I wouldn't lose it. What did I do?? Lose it!!
Nothing else has really been going on. I just need to make a lot of phone calls. So I guess I best keep this short and call them while business hours are still open.
Love Y'all
~Poppet
Monday, January 19, 2015
It's been a bit sinceI updated... Maybe a couple days?? Well I was pretty sick. Which I think I mentioned. But it was Wonder Woman check on me in the middle of the night to make sure I was breathing sick. Usually I am in the hospital that sick but if youve been reading you can see why I was needed here!! I didn't even get "Her" sick.
One morning I curled around my cat and had do to do a few forms of Chest PT and lots of meds and bearely made it down the hall for treatment. You could hear the junk in my lungs wiht every breath, and it was blocking my airways... I went a couple days with very little sleep, barely any food, and somehow managed to help "her." But the good news is, I am off oxygen during the day, and succesfully ate to do which is a huge imrpovement and I am off steroids. I hope. I made it today so we shall see if I make it tomorrow. And!! I got out of the house!! It was AMAZING. I loved it lol. I went to get coffee and groceries but I got out of the house. I loved it. I ate spiced foods today and I have been clearing my lungs all day long. Which is a huge improvement. Now to get off the 3 liters a day for my POTS and get back down to the 2 I need to be functional. I was so depandant on ice cream, coffee, and saline for a week that I am going to taper everything back to normal so I don't shock my system to much.
Life can get pretty serious when it comes to these diseases. When all messed up together it can get quite complicated!! But we make it work.
I also think "her" has realized a bit of what I go thru daily now. Its not easy be always connected to somthing. Always around medical crap, cause you litterally depend on it to survive. You love to do little things like cook and clean because its just something you can do!! They do not understand what life is like for us until they live it. I wish whole heartedly she never had to deal with any of this and know what I go thru. But I am glad she gets the gist of it. She even pointed out to me "i can lose mine you can't.' She is right but what are you going to do?? God has a reason for everything,
But the cat is demanding her attention now so I must get off of here before she starts crying
Love Yall
~Poppet
One morning I curled around my cat and had do to do a few forms of Chest PT and lots of meds and bearely made it down the hall for treatment. You could hear the junk in my lungs wiht every breath, and it was blocking my airways... I went a couple days with very little sleep, barely any food, and somehow managed to help "her." But the good news is, I am off oxygen during the day, and succesfully ate to do which is a huge imrpovement and I am off steroids. I hope. I made it today so we shall see if I make it tomorrow. And!! I got out of the house!! It was AMAZING. I loved it lol. I went to get coffee and groceries but I got out of the house. I loved it. I ate spiced foods today and I have been clearing my lungs all day long. Which is a huge improvement. Now to get off the 3 liters a day for my POTS and get back down to the 2 I need to be functional. I was so depandant on ice cream, coffee, and saline for a week that I am going to taper everything back to normal so I don't shock my system to much.
Life can get pretty serious when it comes to these diseases. When all messed up together it can get quite complicated!! But we make it work.
I also think "her" has realized a bit of what I go thru daily now. Its not easy be always connected to somthing. Always around medical crap, cause you litterally depend on it to survive. You love to do little things like cook and clean because its just something you can do!! They do not understand what life is like for us until they live it. I wish whole heartedly she never had to deal with any of this and know what I go thru. But I am glad she gets the gist of it. She even pointed out to me "i can lose mine you can't.' She is right but what are you going to do?? God has a reason for everything,
But the cat is demanding her attention now so I must get off of here before she starts crying
Love Yall
~Poppet
Thursday, January 15, 2015
Erg
We are now back to your regularly scheduled "Poppet" update. The person I keep righting about is doing decent. I am still helping with tube feedings and I have gotten much better. Considering I had done 3 plus meds since then.
But I am sure you are wondering how I am doing?? Which I have a nasty lung infection and it reminded me of a convo I had with Wonder Woman once. I told her I try to protect people from the not so glamours life and some times quite gross life of CF. Sometimes down right terrifying. She proceeded to tell me that she wants the world to truly understand the complexity and how dangerous my life can get. Sometimes in the matter of minutes.
With "the person" (I'm keeping her name off here out of respect) I have been helping was in the hospital for a couple days. I was there on and off for 3 of them. I had called Wonder Woman Monday and I had sounded horrid. It got to the point I would get in such violent coughing fits, I'd choke the junk in my lungs and I made it all of 5 feet before I sat down on the floor on my oxygen just to make it to a chair. We at first wrote it off as the weather but it progressed she was demanding I call Superman. I didn't even have it in me to argue and I sorta did my meds and went strait to bed.
Tuesday was much worse. I had a fever, my oxygen was turned up and the coughing fits were escalatingly quite dangersouly and I was short of breath and wheezing so bad. I wasn't and still not hungry. I am dependent on candy canes and ice cream to make it thru. Its coconut milk ice cream so it's high in good fats, protein, and sugar. Superman wanted me admitted but I had explained that someone was in the hospital so to take the stress off Wonder Woman he let me stay but to go in ASAP if it gets worse.
So yesterday. After 2 doses of antibiotics I kept telling Wonder Woman when I get on my vest it feels like my chest is going to cave in and I can't take a deep breath it just does not work at all. At this point I am on steroids, Benadryl, antibiotics, alburaral, atrovent, thinners, dependent on saline. Chest PT constantly. Sometimes not even 2 hours apart. So this has left me pretty much useless. I have been helping with tube feedings but it takes it out of me. She knows this but I assure her I am ok and I need to be up and moving because I can not let this stuff just sit in my lungs. As much as it hurts and as dizzy as I get I am capable of doing what I need to get done. She is also helping me out. She does dishes and such cause I am all sorts of connected at the moment. So as I am not doing so well, Wonder Woman made it clear. You WILL be up in the middle of the night doing treatments.
Why?? Because this stuff in my lungs is life threatening. I am not transferring gases properly (oxygen and carbon dioxide) its get stuck in my airways and I am not breathing well because of it. This can cause a lot of pressure in my lungs and cause them to basically pop from my understanding of it and my lungs or lung can collapse. Yes. Collapse. Its to the point I am doing middle of the night treatments and I am being checked up on in the middle of the night.
So after being up all night with this and barely getting enough oxygen in my lungs and extreme sharp pressure in my lungs I am getting by somehow some way but I am plain out miserable and on a crazy cocktail of meds keeping Wonder Woman on red alert just in case I have to go in... This is pretty bad and pretty serious. I am doing 4 types of chest PT some every hour just to keep my stable. This is not to function this is to keep my stable enough to survive until tomorrow. There is no going out. There is no cooking. This is plain out to keep me out of the hospital in the most terrifying way.
But I must get off here to pass messages between nurse, patient, and delivery guy?? Yes. I think def between nurse and patient though lol
Love Y'all
~Poppet
But I am sure you are wondering how I am doing?? Which I have a nasty lung infection and it reminded me of a convo I had with Wonder Woman once. I told her I try to protect people from the not so glamours life and some times quite gross life of CF. Sometimes down right terrifying. She proceeded to tell me that she wants the world to truly understand the complexity and how dangerous my life can get. Sometimes in the matter of minutes.
With "the person" (I'm keeping her name off here out of respect) I have been helping was in the hospital for a couple days. I was there on and off for 3 of them. I had called Wonder Woman Monday and I had sounded horrid. It got to the point I would get in such violent coughing fits, I'd choke the junk in my lungs and I made it all of 5 feet before I sat down on the floor on my oxygen just to make it to a chair. We at first wrote it off as the weather but it progressed she was demanding I call Superman. I didn't even have it in me to argue and I sorta did my meds and went strait to bed.
Tuesday was much worse. I had a fever, my oxygen was turned up and the coughing fits were escalatingly quite dangersouly and I was short of breath and wheezing so bad. I wasn't and still not hungry. I am dependent on candy canes and ice cream to make it thru. Its coconut milk ice cream so it's high in good fats, protein, and sugar. Superman wanted me admitted but I had explained that someone was in the hospital so to take the stress off Wonder Woman he let me stay but to go in ASAP if it gets worse.
So yesterday. After 2 doses of antibiotics I kept telling Wonder Woman when I get on my vest it feels like my chest is going to cave in and I can't take a deep breath it just does not work at all. At this point I am on steroids, Benadryl, antibiotics, alburaral, atrovent, thinners, dependent on saline. Chest PT constantly. Sometimes not even 2 hours apart. So this has left me pretty much useless. I have been helping with tube feedings but it takes it out of me. She knows this but I assure her I am ok and I need to be up and moving because I can not let this stuff just sit in my lungs. As much as it hurts and as dizzy as I get I am capable of doing what I need to get done. She is also helping me out. She does dishes and such cause I am all sorts of connected at the moment. So as I am not doing so well, Wonder Woman made it clear. You WILL be up in the middle of the night doing treatments.
Why?? Because this stuff in my lungs is life threatening. I am not transferring gases properly (oxygen and carbon dioxide) its get stuck in my airways and I am not breathing well because of it. This can cause a lot of pressure in my lungs and cause them to basically pop from my understanding of it and my lungs or lung can collapse. Yes. Collapse. Its to the point I am doing middle of the night treatments and I am being checked up on in the middle of the night.
So after being up all night with this and barely getting enough oxygen in my lungs and extreme sharp pressure in my lungs I am getting by somehow some way but I am plain out miserable and on a crazy cocktail of meds keeping Wonder Woman on red alert just in case I have to go in... This is pretty bad and pretty serious. I am doing 4 types of chest PT some every hour just to keep my stable. This is not to function this is to keep my stable enough to survive until tomorrow. There is no going out. There is no cooking. This is plain out to keep me out of the hospital in the most terrifying way.
But I must get off here to pass messages between nurse, patient, and delivery guy?? Yes. I think def between nurse and patient though lol
Love Y'all
~Poppet
Wednesday, January 14, 2015
Laugh with me
Sorry I have been MIA this past week.
She had her surgery and I had spent about 12 or more hours at the hospital one day, to go home do my saline and lung treatments, and go to bed and get up the next morning to get sent home after a few hours lol. Which I did it the next day to... Then I got sick...
So. She is doing much better, she is home and I am helping her. Which is not a problem at all and I am so glad she is finally back home. I was also feeling quite guilty that I could not help out in other ways while she was in. I had Wonder Woman tell me I was not allowed to clean ANYTHING cause my lungs were starting to get bad. I was half volunteered and I half willingly took this on. I need to help out in someone even tho they make it clear I need to stay healthy to. So today I got to learn feeding tubs. OMG.
This AM wasn't to bad, I got it all in for her and just got antibiotics and water everywhere. Which wasn't to terrible because well it dries right?? That was after a bunch of lung treatments on my part. Well round 2 wasn't so great. It was rather umm messy... So the formula comes in cans right. So me being out of it on my owns meds doesn't realize i opened a can of formula. I picked it up to shake it... ALL OVER THE KITCHEN. Milk based formula (I'm OK) CRAP!! It's everywhere sorry... Go to help her and told her the sticky kitchen is SO not my fault. Glad she has a sense of humor. OK I can do this!! I have this all set up and I basically use this gigantic syringe with a point nozzle and put it in a tube and hold it there. It slipped while I was pushing it and it gets all over her!! OMG she's laughing and I'm just like OMG. This the person that helps me ALL the time and I just got formula all over her... So she told me the nurses thin it out. So I do which makes it much easier to use. Sssooo I go to try this again... ALL OVER her again it just sprays everywhere!! I am horrified.. she is laughing. OK well if you hold the thing nozzle down it leaks everywhere.... She has it in her lap now... I so feel defeated. She's laughing and assuring me its OK and she needs a bath any way and her blanket is due to be washed. And no really she actually had to go take a bath after because that stuff is sticky and was everywhere. But... But! She was such a good sport about it and says we have to learn together because it's what was always do. And I get round 3 with it very soon... I just have to sit here and laugh. I remind myself I am not a nurse, and I am also sick. Oh and really that stuff is sticky. I went to grab the can off the counter and it was stuck to it lol
As for me?? I have a bad lung infection and on my cocktail. I am at home and OK. Though alls I can handle to eat is ice cream and my lungs sound nasty but its ok.
OMG one more quick story for ya. So I have CF and a horrid lung infection so I sound pretty rough. When they came home I was in a different setting up my neb, and Wonder Woman came out to check on me and my lungs. I look at her and go "OMG she sounds like me!! is she ok?!?!" She had to laugh at me and assure its cause her nose is stopped up and of course the tube. Yes yes I tend to over react to things. And it ends up very comical. But this the person that has put up with my crap for years. I am sassy, stubborn, and over protective. Which is how we always end up with these stories. And the nurses who train me to help out are laughing really hard at all this and wanted to share some comic relief in your day.
Now to go for round 3 :-D.
Love Y'all
~Poppet
She had her surgery and I had spent about 12 or more hours at the hospital one day, to go home do my saline and lung treatments, and go to bed and get up the next morning to get sent home after a few hours lol. Which I did it the next day to... Then I got sick...
So. She is doing much better, she is home and I am helping her. Which is not a problem at all and I am so glad she is finally back home. I was also feeling quite guilty that I could not help out in other ways while she was in. I had Wonder Woman tell me I was not allowed to clean ANYTHING cause my lungs were starting to get bad. I was half volunteered and I half willingly took this on. I need to help out in someone even tho they make it clear I need to stay healthy to. So today I got to learn feeding tubs. OMG.
This AM wasn't to bad, I got it all in for her and just got antibiotics and water everywhere. Which wasn't to terrible because well it dries right?? That was after a bunch of lung treatments on my part. Well round 2 wasn't so great. It was rather umm messy... So the formula comes in cans right. So me being out of it on my owns meds doesn't realize i opened a can of formula. I picked it up to shake it... ALL OVER THE KITCHEN. Milk based formula (I'm OK) CRAP!! It's everywhere sorry... Go to help her and told her the sticky kitchen is SO not my fault. Glad she has a sense of humor. OK I can do this!! I have this all set up and I basically use this gigantic syringe with a point nozzle and put it in a tube and hold it there. It slipped while I was pushing it and it gets all over her!! OMG she's laughing and I'm just like OMG. This the person that helps me ALL the time and I just got formula all over her... So she told me the nurses thin it out. So I do which makes it much easier to use. Sssooo I go to try this again... ALL OVER her again it just sprays everywhere!! I am horrified.. she is laughing. OK well if you hold the thing nozzle down it leaks everywhere.... She has it in her lap now... I so feel defeated. She's laughing and assuring me its OK and she needs a bath any way and her blanket is due to be washed. And no really she actually had to go take a bath after because that stuff is sticky and was everywhere. But... But! She was such a good sport about it and says we have to learn together because it's what was always do. And I get round 3 with it very soon... I just have to sit here and laugh. I remind myself I am not a nurse, and I am also sick. Oh and really that stuff is sticky. I went to grab the can off the counter and it was stuck to it lol
As for me?? I have a bad lung infection and on my cocktail. I am at home and OK. Though alls I can handle to eat is ice cream and my lungs sound nasty but its ok.
OMG one more quick story for ya. So I have CF and a horrid lung infection so I sound pretty rough. When they came home I was in a different setting up my neb, and Wonder Woman came out to check on me and my lungs. I look at her and go "OMG she sounds like me!! is she ok?!?!" She had to laugh at me and assure its cause her nose is stopped up and of course the tube. Yes yes I tend to over react to things. And it ends up very comical. But this the person that has put up with my crap for years. I am sassy, stubborn, and over protective. Which is how we always end up with these stories. And the nurses who train me to help out are laughing really hard at all this and wanted to share some comic relief in your day.
Now to go for round 3 :-D.
Love Y'all
~Poppet
Monday, January 5, 2015
Advocate
Somedays shes waits for me to wake up. Patiently, and when I do, she tells me her fears and concerns. Somedays the weight of what she tells me makes me cry. This is someone I care about telling me about her health and her fears. She tells me because she thinks I can relate to her and comprehend on a level others can't whats she's going thru. I have never personally dealt with what she' s going thru and I pray I never due. But one thing I do understand is what it is like to be chronically ill. I get it on a level that no one else can so much as imagine. Most of the people that imagine it are way off!! Espically TV. People pretend to know but there is comprehending this stuff until you go thru it yourself. We say we get, we say we understand. But. The truth?? Until you go thru it you have NO idea what they are feeling.
I posted a while back that, Wonder Woman told me once that she use to tell her patients family that she understood what they were going thru. But she never truly comprehended it until she spent countless night by my bed praying. It broke my heart. I wish she never had to know that feeling. Sadly I am in her shoes now. Someone very dear to me is going thru their own health battle. That is quite serious and she is coming to me on her feelings. Sometimes the only thing I can tell her is to pray. Thankfully she understands that God is here with us. We remind each other that God will get us thru all of this.
I have not always been this postive. I got my POTS diagnosis when my life was falling a part. I had to drop out of school, quite my job, and was losing friends and my boyfriend. I really thought my life was over. I had no idea which way was up and was spending weeks in bed. The All Father got in touch with me and told me that my life was not over and I needed to find away to make my life work. He was right. I have tried to do many thing but what I always fell back on was food (im a chef), God, family, and being an advocate.
Being an advocate not means just to be a voice for yourself but for those who can not speak on their behalf. Whether they are to scared or don't know where to start. And a lot of this starts with listening. That means being there before I even get my first cup of coffee in the morning. That means being strong when you just want to hug them and cry. Some days they don't want you to do anything but listen.
Today I had to tell someone, I know you want the call on all the details of when and how your surgery will happen, but you sititng in this house worrying is not gonna help it. Go. Get out of the house, they have your number and they can leave a message. It took years of dealing with these diseases to learn that. You can't mope and dwell. It will destroy you. You can not let anyone of this stop you from living your life. It was the hardest thing I ever had to learn. But i have learned all this and I have never been more greatful for those who taught me that.
Though it's heart breaking to hear stories I feel so blessed God has provided me with the opportunity to help people.
Love Yall
~Poppet
I posted a while back that, Wonder Woman told me once that she use to tell her patients family that she understood what they were going thru. But she never truly comprehended it until she spent countless night by my bed praying. It broke my heart. I wish she never had to know that feeling. Sadly I am in her shoes now. Someone very dear to me is going thru their own health battle. That is quite serious and she is coming to me on her feelings. Sometimes the only thing I can tell her is to pray. Thankfully she understands that God is here with us. We remind each other that God will get us thru all of this.
I have not always been this postive. I got my POTS diagnosis when my life was falling a part. I had to drop out of school, quite my job, and was losing friends and my boyfriend. I really thought my life was over. I had no idea which way was up and was spending weeks in bed. The All Father got in touch with me and told me that my life was not over and I needed to find away to make my life work. He was right. I have tried to do many thing but what I always fell back on was food (im a chef), God, family, and being an advocate.
Being an advocate not means just to be a voice for yourself but for those who can not speak on their behalf. Whether they are to scared or don't know where to start. And a lot of this starts with listening. That means being there before I even get my first cup of coffee in the morning. That means being strong when you just want to hug them and cry. Some days they don't want you to do anything but listen.
Today I had to tell someone, I know you want the call on all the details of when and how your surgery will happen, but you sititng in this house worrying is not gonna help it. Go. Get out of the house, they have your number and they can leave a message. It took years of dealing with these diseases to learn that. You can't mope and dwell. It will destroy you. You can not let anyone of this stop you from living your life. It was the hardest thing I ever had to learn. But i have learned all this and I have never been more greatful for those who taught me that.
Though it's heart breaking to hear stories I feel so blessed God has provided me with the opportunity to help people.
Love Yall
~Poppet
Thursday, January 1, 2015
Happy New Year
Well it's the New Year. And no this is not a typical "new years resolutotion , new year, new me" post. Cause I kinda like me, I like the person I have become. I just figured after a 2 day Marvel Marathon and an all day Lord of the Rings marathon yall dserved a blog update.
Typical year recap?? Ah sorta. A lot has happened this past year. I went from 24 hour oxygen for quite a few months, I got it down to at night only. I was off it for a while in general but kept waking up and needing it for a couple hours so I could half function. I also have full control of my IV, I think that is partially becaue I have a nurse that monitors me all the time. She does choose to do that, which I am forever greatful for.
2014 was pretty awesome. It had its ups and downs. I started it with major lung infections, allergic reactions, and completely redoing my kitchen. To getting on proper medication and getting my life back. Though most days I hate doing mucomist I am so greatful that I have a portion of my life back. I was able to travel this year, and for the first time in many years I was able to smell the ocean and enjoy it. I felt the breeze in my hair, listened to the crashing of the ways, and felt whole. I was able to sit and bake in the sun and feel the warmth of the sun on my skin. I was able to add to my tattoo collection, and keep my hair a beautiful shade of teal. I can't say I gained weight. But I did work exetremely hard to stay healthy. I was able to get awareness out, and recived a phone call that a local nurse newwhat POTS was when one of Wonder Womans friends asked how I was doing. No one knows what POTS is. At least most have at least heard of CF.
I was able to start exercising again this year to only end up on crutches and get another lung infection. But I am still able to get to the mall and just walk. So I am still able to exercise in my own way. I have gained control back of part of my life that I had once lost. Which is a miracle. My lung function is poor but I am still able to put in the effort on good days to keep them working enough to sustain a functional life.
All I want out of 2015, is the same thing. I want to be able to speak to nurses and nursing students about my life with POTS, CF, and MCAD. I want to let people know even though your allergic just about every food, you can still eat food that taste good. And if God says its time for new lungs, I will be blessed with such an oppurtunity to have a second chance at life and have an amazing team of medical staff as I do where I call home.
Love Yall
~Poppet
Typical year recap?? Ah sorta. A lot has happened this past year. I went from 24 hour oxygen for quite a few months, I got it down to at night only. I was off it for a while in general but kept waking up and needing it for a couple hours so I could half function. I also have full control of my IV, I think that is partially becaue I have a nurse that monitors me all the time. She does choose to do that, which I am forever greatful for.
2014 was pretty awesome. It had its ups and downs. I started it with major lung infections, allergic reactions, and completely redoing my kitchen. To getting on proper medication and getting my life back. Though most days I hate doing mucomist I am so greatful that I have a portion of my life back. I was able to travel this year, and for the first time in many years I was able to smell the ocean and enjoy it. I felt the breeze in my hair, listened to the crashing of the ways, and felt whole. I was able to sit and bake in the sun and feel the warmth of the sun on my skin. I was able to add to my tattoo collection, and keep my hair a beautiful shade of teal. I can't say I gained weight. But I did work exetremely hard to stay healthy. I was able to get awareness out, and recived a phone call that a local nurse newwhat POTS was when one of Wonder Womans friends asked how I was doing. No one knows what POTS is. At least most have at least heard of CF.
I was able to start exercising again this year to only end up on crutches and get another lung infection. But I am still able to get to the mall and just walk. So I am still able to exercise in my own way. I have gained control back of part of my life that I had once lost. Which is a miracle. My lung function is poor but I am still able to put in the effort on good days to keep them working enough to sustain a functional life.
All I want out of 2015, is the same thing. I want to be able to speak to nurses and nursing students about my life with POTS, CF, and MCAD. I want to let people know even though your allergic just about every food, you can still eat food that taste good. And if God says its time for new lungs, I will be blessed with such an oppurtunity to have a second chance at life and have an amazing team of medical staff as I do where I call home.
Love Yall
~Poppet
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