Support

I've been spent almost the entire month of September sick, which has taking everything out of me, including the fact that I was admitted and came out weaker then I went in. It was a very different experience but I did learn how awesome my friends are. I always had some kind of lovely message on my phone, and my parents were there with me including in isolation garb. They always have away of reminding me how much they care in there own ways. Sometimes I am reminded how caring my friends are with some of the texts I get to. Which I am sure Lady Sif handled that one but I am unsure because that entire week was a blur thanks to painkillers and benadryl...

I as well as many others who are chronically ill I am sure forget that they fight with us. They take time out of their day to encourage us, or just distract us from the intensity of our daily lives. Sometimes though, they cry with us because there is nothing else that can be done. They feel helpless and at a loss of how to make me feel better or distract me. Or some thing they are helping the best way they can and over whelm us... Though they did get me watermelon... So it evened out. But anyways.

We constantly think we are in this alone, I have even said this to my biggest supporters, "you don't get what I am going thru," "your not going thru this i am," "do you even get whats it like to feel fluid in your lungs." One said yes, and it was a bit of a relief. But this is not the reality. Just because they do not go thru your symptoms, does not mean they are not going thru this to. This something that took me awhile to learn. I am known in the hospital, I am known in the doctors offices and ERs. So you can tell I can get pretty sick, or if you read my blog you know that to. For the longest time I would tell everyone they didn't get what I go thru at all and that they are not going thru this I am. But thats not the reality.

They go thru all of this but in a very different way. They see someone they love fighting for their life and not a thing they can do about. They see the monitors, the IVs, the pharmacy of meds we take, they see all our treatment. They see us drop everything to take meds, do treatments, or connect to something. They watch us lose everything we love to do and there's nothing they can do to stop it. Even worse there's not a thing they can do to prevent all this. Some have watched this for years, many can't handle the pain and leave. I don't hold it against them, it gets very overwhelming very quick. There are people who say they are strong enough, don't get any aspect of whats going and get a very harsh reality check. Being chronically ill is emotionally draining, not just for us but for the people around us. We end up comforting them at times and telling them "hey, i am fine i got this!!" and we continue to fight and be strong for the people around us because they need just as much encouragement as we do. Sometimes I feel they need more, because they aren't going thru it physically, so they are at a loss of what they can do to help, just to give us some relief from the physical and emotional pain.

I love my little group of warriors, they are few but they are strong. They have never wavered and they always stand firm when I need them the most. Some even made deals with me going hey you can't text have Wonder Woman text me. Some clear their schedules to come see me because my text are so drug induces it's scary. Some send pictures and some send songs to distract from the reality of my surroundings. Some virtually shop with me, and some come and hold my hand. And you know what?? I wouldn't trade any of them for the world. I am pretty sure we are all crazy by this point as the things I have to tell people things that aren't the most comforting but we find a way to fight thru in the ways that we can.

I guess I just want people to know they are never alone, and though you may feel this way, remember that people around you really do care in the ways that they can express, and if you have a medical professional in your support group, they know the blunt reality of what you face in a way we can't comprehend so be easy on them, they know your reality a bit more then we do and we are living thru it.

But I best get off here don't feel so hot.
Love you
~Poppet

Why I've been MIA

So I just got a text I haven't updated in awhile and well I haven't and here's why... I've been sick again!! I thought it was just Pnemonia but I got worse as the week went on and Wonde Woman took me in to find out I had appendicitis...

I had started antibiotics at one point that week, I wasn't eating, I couldn't catch my breath and I had a fever, which to me is just Pnemonia. Something we treat all the time, I had canceled plans with a friend who wasn't to happy with me and I kept putting it off because I was just getting worse and thought all my stomach pain was a high fat diet and my lungs being gross. So come Sunday I was suppose to go see my friend on her last day of work and I tried to hard to get ready but I had this pain in my back and my lungs felt like they were gonna rip I couldn't catch my breath and I finally just laid in my chair. No coffee that day!! Then my stomach hurt so bad I was curled up in bed I couldn't move and Wonder Woman got to the point she took me in. I wasn't even texting people that day I just couldn't move it hurt so bad. So we got there, got me back did a CT scan... Got me some painkillers... The doctors comes in the room and tells me "well your health just got that much more complicated, you have appendicitis, we already got things in order to transfer you." Before I could say a thing Wonder Woman immediately asked where my Power of Attorney is because surgery with my lungs is incredibly dangerous. So they got me transferred my paramedic was so sweet, they got me in my bed, got me comfortable and the craziness starts.

So I was sent there to have a surgical work up, and one guy came in and was like do you know why your here I told yeah appendicitis and he's like oh it's much worse then that it's "perforated" and as of now we are gonna keep an eye on it, surgery once we clear the infection, and surgery in 6-8 weeks unless it burst... Lovely!! And my nurse was farely new and she was so nervous and confused then tried to run an IV with out flushing it. Ok whatever, the all the interns and residents came in, by the time the poor intern came in they had giving me more meds, I still hurt so bad, and he was doing what he was supposed and I just lost it I couldn't stop crying and the poor guy had no idea what to do but rub my back, i felt so bad for him... And by the time I made it up stairs, I was in so much pain even with all the drugs in me, that I told Wonder Woman I am never having kids if it's hurts this bad not going thru this willingly again. She knows we to well and said you don't need to with your health anyways.

So I make it up stairs and it was decent, my nurses were very sweet, I was in isolation tho. I couldn't figure it out for the longest time I was so out of it, my painkiller was making me hallucinate so I just slept. My favorite of the surgeons, well the intetn was very sweet to but never saw him again, came to see me. She was very sweet, and she got me everything I could have needed. I also never knew my lungs hurt so bad until the meds hit me... So they had pulmonary involved to because of how bad my lungs are of course. I don't remember most of these days because I was painkillers every 3 hours.

I remember barely texting my best friends, the All Father coming to see me because he was very worried because my text were nonsense at this point, and one person asking me when we were going to hang out again and well I still don't know. As I am still very sick.

But I am home for now, I know I have to have this things removed, and if that remains true I need a new tattoo... Lol

Love y'all
Poppet

Nurses

So I was supposed to go out today, meet up with a friend got my makeup on and everything... but my lungs just aren't working, and I am not hungry which I am sure it means I have the start of Pneumonia!! Which I am trying to kick ASAP as I want to see my friend like now. So I of course call my nurse, by MY nurse yes I mean Wonder Woman, the take no crap from me, licensed and can tell whats going on in a heart beat. I seriously think she senses it. Especially calling at 2 telling  her I haven't eaten since 10 and not to mention my lips are white... Still have barely ate but at the end of the day the nurse KNOWS what is going on and knows what need to be done and has to make decisions that will keep me out of the hospital.

Having three chronic illnesses and two that directly affect my heart and lungs I am very dependent on nurses. Though they have fully trained me on how to run my own IV, set up my own nebs, and drawing meds from a bottle. You name it she has probably taught me how to do it, so I can care for myself as I am independent. However there are times where I am completely dependent on a nurse. Hands down need their help to do just about everything.

Living with heart and lung disease means you spend a lot of time around hospitals, doctor offices, labs, and infusion centers. The heart of all of this is the nurse. Who now a days I am convinced are angels. Now growing up around the nurse, you get use to certain things. Like them not always being there for holiday, I mean hospitals do not close because its Christmas. Patients come first at all times. Whether its holding your hand, or working on you. They NEED you. They might be the only comfort they have that day. You also learn to be empathetic to people and their suffering and not to mention taking for granted they can fix most problems hands down. Never realized this until a friend pointed it out. And really health insurance has a nursing line?? What ever happened to calling Wonder Woman during a crisis. Oh... Right... not everyone is blessed to have a family member be a nurse.

Wonder Woman isn't the only nurse to have an impact on my life. Now I am not going to name anyone by name, even if I do remember them as this blog is anonymous. Many nurse have walked in while I am dieing and I am not exaggerating. I would be in a hospital bed fighting for my next breath as nurses gather around to stabilize me so the doctor can make the calls. From what I am told, there are policies in place for this scenario. I had a nurse cut her hand on a glass vial,  treat me with gloves on as to protect me and her, and then clean up her hand. This says something about nurses, she put her pain aside to make sure I had the meds I needed to ensure the fact I am breathing. She was in my room quite a bit that night.

I was in another time, where my lungs were just bad, had a horrid infection and ended being admitted to trauma and then a room, for respiratory distress, my nurse had me stable, and to distract from the pain and as much as I hate the word suffering. She showed me her tattoos and talked to me about her daughter. As I have tattoos myself this was a guaranteed distraction waiting to be transferred as there was nothing left she can do unless I go down hill which we always pray we don't. I got up to the floor that night, I was bit heart broking texting  the All Father assuring him I was ok. After a night of hourly treatments, it was time for blood work, the nurse worked on my PICC and talked to me and assured me someone would love me in spite of my disease, which was not wrong.

I have had a nurse hold my hand for an hour before to keep me calm. She has stayed with me many years later and often think of her and just wish I could thank her. I mean an hour of holding my hand is huge for someone who is the most scary position they could imagine. Being alert thru a deadly dysrhymia which they got sorted out. She stayed calm and did everything she was supposed to and held my hand.

Which brings  me to my last nurse though I could write about more like the nurse who french braided my hair to keep it out of the stickies after my first MRT, but what comes to my mind is the second MRT, I was doing an IV infusion, and i reacted to the drug, almost instantly my breathing went terrible, and I thought it was nerves until Wonder Woman said something about how I looked. This poor nurse stopped her busy day to hold my hand and assure me I was OK, while they worked on me, and pulled all the meds out my PICC and flushed to ensure no more meds were going thru my line. She dried my tears, got me oxygen, and held my hand.

I wouldn't be alive if it wasn't for nurses running to my aid, as my first line of defense. Doing what nurses do, listen to my lungs, and heart to make sure I am getting air movement and I am still in rhythm, paging doctors, and doing their skill. Then going above and beyond to hold my hand and dry my tears. Nurses are super heroes with angels wings. I wish I could  go back and hug every last nurse and thank them for keeping me a live and sacraficing everything to ensure I see the next day let alone the next minute.

As a patient to every nurse I truly thank you for what you have done for me.
Love,
~Poppet

Last night

If you read on here yesterday I had woken up a big sick with my lungs, short of breath, junky lungs more so then normal, and over all just feeling terrible. I had taking all my meds, called Wonder Woman to let her know what was up... 

Every time my meds wore off my breathing just went down hill. So I kept up on the ever 4-6 hours on Benadryl. To keep my breathing under control and such. Started the steroids at lunch yesterday which usually works with in the hour. Well last night towards the evening I was sitting there playing a game on my iPad and my heart suddenly went out of rhythm, and could not catch my breath. I sat there for a few minutes trying to catch my breath and my chest got tight. So I went to get Wonder Woman ASAP. My heart is off, I can't catch my breath... She told me to take my Benadryl, and make sure to take my prednisone tomorrow. So I took a decent amount and curled up in the chair almost in a ball. Laying flat was NOT an option as I can not get air into my lungs that way. Laying down is a guarantee to get my heart rate down. Especially the flatter I am the lower it gets. POTS y'all. So my ball position I was essentially flat but face forward and my back was arched enough I could expand my lungs and get more oxygen in. Which helped!! Wonder Woman was like "What are you doing." Im like I need to be flat but need to breathe!! She wanted to pound my back so bad lol but new it would throw off my breathing as it would help dislodge stuff stuck deep down in my lungs. So I finally got stable enough that I could do a breathing treatment though every time I sat up my heart did its thing again. She looks at me and goes you can always crawl. Which she is NOT JOKING when she says that, and I looked at her and told her you think I won't if I need to. She new I would if I have to I will sit on the floor in the middle of a store just to catch my breath!! Do not care. 

So I finally got to lay down and looked at Wonder Woman and told her I am taking enough Benadryl, turning my oxygen on 3, getting a heating pad and propping myself up. She told it wouldn't hurt me so I did just that. I sleep decently well on my oxygen turned up, I am sure its just me getting the large amount of oxygen. Most days I just leave it on 2 and sleep as much as I can sometimes its more then others. 

This morning I woke up a bit uncomfortable as I ate to much fat, and not enough enzymes...

But I must get off here.

Love Y'all

~Poppet

There hasn't been to much going on since the last time I updated. I think the rest the week except for Sunday I had stayed in. Being out 3 days in a row takes a bit out of me. I get exhausted so easily but yet it never really stops me from doing things. I always try to stay on top of things get things done... but to day is NOT one of those days. I had been a bit busy for the most part and my chest was a bit tight yesterday but I know the cause of it and was treated rather easily. I ended up going out with mom and out with my friend yesterday. I am sure they will have a proper introduction soon. As I had spent a bit of time with them yesterday evening sipping on coffee.

They had mention me publishing something on my health (i am pretty this what he said but my memory is terrible) which I have though of doing this before, or well I plan on doing this I should say. Most people truly do not understand what it's like to be live like this, and more importantly we who are sick, tend to forget that people around us go thru all this just as much as we do. So I am pushing Wonder Woman to get involved and write her part. She has been thru so so so much with me, just like most CF/POTS/MCAD mom's do. They are there for everything and if they aren't there they magically show up from wherever they are to make sure there sweet child is safe. She also gets the blunt rawness of my steroids. I am decent at holding back after i flip out to her. I am sure I do this to Batman and Lady Sif though. Just flip out over nothing and then calming tell my "target" what is going on and why I am so upset. If not they tend to get the blunt sarcasm that comes with to many steroids. I would love to publish my blog and some point and the stories behind the post, explain what was happening that day or leading up to what happened, Wonder Womans points of view and how she helped and what she saw. She always gets on me cause I don't always bluntly put out there what I go thru. Somedays I figure the less you know the easier it is for you. Which is probably why there is a stigma surrounding the chronically ill.

Which I think this past week has caught up with me, I woke up a bit chesty and sat up and couldn't breathe well at all. I get short of breath easily even on oxygen and have to catch my breath often. I called Wonder Woman at work and of course she tells me to do what I am already doing. Its like I don't call you to tell me to take meds I think I know to do that buy now. But I call just to give a heads up so you can't say later in the day "you didn't tell me." You read the text and replied you know lol. I have been known to try to deal and wait to last minute and don't do that much anymore. I tend to let people know now a days.

But I guess I should get off here
Love Y'all
~Poppet

Wonder Womans Bday

Yesterday, was Wonder Womans birthday!! So I spent the day at the mall with her!! It's getting a bit hard to walk the mall on a pulsating tank but I always have the option to free flow it. Which I do at times because other wise I do not get enough oxygen and get a bit winded. We walked from one end to the other TWICE. I sat down 3 time I think. For a bit on end, and had to use my inhaler once. Which I guess isn't terrible but no where near where i use to be. I am OK with that because I am still active and can get out.

Malls are an obstacle course for those of us with really bad asthma!! Yes I have asthma on top of my CF/POTS. So we call Wonder Woman the yellow canary at times because she is always looking out for everything that could possibly trigger me, and some stores you walk by are well STRONG!! I mean in your face make you sick strong. So of course we went in where we always do and we stopped at our favorite favorite FAVORITE store Michael Kors. The only designer I will actually wear. I got me a pair of jeans that actually fit!! OMG, Wonder Woman was looking for her something, and found the smallest size they make, and was like here!! We get the catalog and when I saw the pants were like 70s flare i HAD TO HAVE THEM!! lol They are so sweet there and let me know the tiny sizes are there so I can go and snatch them up lol. Then!! I got some heals to go with it I was such a spoiled little happy thing. We got Wonder Woman stuff to not just my spoiled little self lol.

I haven't worn heals in years, I use to wear them all the time but I stopped wearing cause it was stressing my heart out. So after a few years of having my heart under control I was wearing a tiny heal to Nurse pinning every year. Well the new shoes I bought were a decent chunky heal and they are almost wedge like and have  that punk feel to it, and well I did quite well in them today. No worse then I normally am being out for a bit. Which I rocked them hardcore today with my 1970s inspired jeans and a shirt from the 70s no really it was Wonder Womans in the 70s!! lol I shipped a lovely package to England today to my Pixie Mum!! I really hope she loves.

But I must get off here so i can cook dinner.
Love Y'all
~Poppet

frusterated

Well yesterday was quite busy and I am not always the best at busy days as I get SO exhausted. So much wears me out but not much I can do about it but work thru it.

But I had a doctors visit yesterday morning, to keep an eye on my blood work and whatever maitnence I need. I also got a print out of my lab work which I never get they sorta just gave it to me. I have it all online so whatever. So when I saw Wonder Woman I gave the lab values to her, and she took one look at them and assured me that my RBC wasn't terribly low and I always think the worse so I assumed I'd need blood!! hahah well of course there are other steps before that. But thats not where my mind goes because I never have the best of luck. Well she kept on going thru things and she got to my kidney function levels. Well my GFR was the highest she has ever seen, and my BUN was the lowest she ever seen. She was a nurse long before I was born. She also informed my health record was the worse she ever seen to. But anyways I guess GFR is how well your kidneys work and the normal is 60 well mine is 253... Which means my kidneys work over time. No one is concerned because I have POTS and this is quite for those of us who retain no fluid what so ever. I had someone yell at me once I drink to much coffee as its a diuretic. I kindly told them you give me 2 liters i lose that. You give me 2 liters and 18 ounces of coffee i lose the 2 liters and 18 ounces. Which explains the high GFR and low BUN. But nothing to much to be concerned about I have to wait a bit more to get this weeks values. I am bit worried about my low blood count or if its dropped lower but apparently this common with my disease process or so I am assured.

I have also got this private message from some stranger that I need a strong man like him to date to make my parents proud. I tried to shake it off, I really did but I am not so nice when people tell me I need a man to make my parents proud. Especially being so sick all the time. My parents have told me countless times they are proud of me. Because I am able to pick up my life being sos sick and make the best of it. Because of how I give back to the world in spite of the hand I was dealt. No one would be mad if I was upset because of how terrible my disease process can get but thats not what I am about at all. I am not about to get upset because I was dealt a poor hand. Thats not how you win a game of poker. I was raised to be an independent strong woman, I was raised to take care of myself. This means with a disease, this means not letting something control me and take the best of who I am. My parents are proud because I put myself out there to gain awareness and not just for me just so some can have a small once of hope to get on with their days inspite of everything that goes wrong.

So then, to make my day that much more interesting. I go to pick up my meds pull in, handicap because my lungs are worthless, oxygen on, and some one was coming out of the store... They looked at me and waited by my truck. WAITED. BY. MY. TRUCK. They were waiting for me exit my truck to speak to me. So I get this, and not trusting a soul especially a stranger waiting for me, i get on my phone and start going thru stuff messaging people. They knocked on my window to get my attention... I shook my head no as I am not interacting with a stranger its not happening, well one that makes me feel very uncomfortable. She stops another man and they both stare at me. Its like why are you people bothering me, its like please leave me be.

But I am going to get off here and finish my movie and my coffee
Love Y'all
~Poppet