Asthma and a bit of drama

I recently posted on my twitter, that the worse thing that can happen to me is NOT lung and heart disease. The worse thing that can happen to me is people who do not understand my battle. Theres also people that know enough to be dangerous, their usually non medical professional that have educated on their families disease and does not understand that someone else health might be a bit different. This part did not go into my tweet though its very important to ask someone in your life "how do you treat emergency situations."

I recently have spent sometime in my pulmogist hospital because he knows how to treat my diseases and exasperations in a very specific ay, which is usually over flow of fluids, low dose IV steroids, and a few bags of IV antibiotics. We can't use epi unless we are in the hospital, and all asthma attacks even at home are treated with benadryl and steroids. We typically use liquid benadryl as it works faster and I can focus on my breathing treatments.

Since I have been out of the hospital, me and Rubes have been adjusting to a new routine as well as falling back into our old routine. So to say she has been a bit of handful its an understatement and I have been trying to work with her kitty anxiety the best I can, however she's obsessed with the bathroom. I choose my fights wisely, so i figured as long as she is not crying and howling all hours of the day just let her sleep in the bathroom, leave the poor thing alone. Well i guess she used the bathroom in the bathroom and not her litter box, and my skin is a bit sore from my heart monitor and was distracting myself so when I came to be yelled my reaction was "ok." I really had NO idea what else to say. Well this made someone flip out and they became very passive aggressive with not just the cat but with me. 8 years of the cat following me into the bathroom I can't say no now. Well this sent said person over the edge and I hear doors slam I think nothing of it.

Wonder Woman has been texted about this, and she comes home and I guess the person who's already mad at me and the kitty child tells her the bathroom door has to stay shut, i get wind of this (no one took the time to tell me before hand) and I tell Wonder Woman, this is gonna get sticky come shower time. The bathroom has no windows and is tiny so theres no room for air to circulate, this is going to trigger my asthma, how am i supposed to breathe. We didn't want to make anymore waves so, she sorta said well just hold your breath.

Everyones has had their shower already had a mild attack this point. Wonder Woman was pounding on my back so I could do my vest so nothing gets dislodged. I go to air the bathroom so I can get in there, and as soon as I open the door, I instantly had a MAJOR asthma attack. I was coughing so hard I was gagging. I used my atrovent inhaler and turned my breathe oils so I could make it down the whole to do xopenex, grabbed my benadryl, and by this point Wonder Woman is helping me because I was gasping for air. She actually had to set my neb up so I could get some relief. She got my pulmozyne and told me no vest tonight I need you to care for your lungs. She got me mored meds, and my Breathe stick, and told my kitty child to keep an eye on me.

Wonder Woman is very very protective of me, not only am I her youngest were also very close and do everything together. So lets just say she very firmly made her point and the bathroom door is open and Kitty Child is somewhere in the house.

The point?? When people try to kindly but firmly say "hey this is a bad idea" please please please listen to them. They aren't just saying this to cause a riff, they are saying this to prevent something like this from happening or worse. Yes worse, this could have ended very badly, considering by the time i get admitted I have no lung sounds what so ever (bad).

Please listen when people speak its not to cause riffs but to prevent horrid scenarios from happening.
Love Y'all
~Poppet 

update

I am sure everyone is wondering what exactly happened for me to get put in the hospital. Well what it comes down to is my lungs have had enough, they triggered off my heart, and the med i was using to "help" what was actually making everything worse. M SATs were 93 sitting on oxygen of 3 free flowing and I had very little lung sounds. Everyone gave up hearing for them.

I ended up having a lung infection for a couple months, and I saw another doctor in here so we found out i am IGG deficient so this is your immune system and what helps you battle infections. That mixed with a proper breading ground in my lungs my body just needed a little extra help. We needed IV steroids every 4 hours around the clock and some IV Axelox. On top of that we were pushing to get enough fluids in my body to counter whatever dehydration my symptoms were causing. Its a LOT of work. But I had an amazing team that works really really hard to keep me a live. And Frigga started a prayer ring for and I am forever grateful for her being in my life. I really do love her.

I have taking a huge step backwards in the battle against my lungs. Everything I worked so hard for is gone. It sounds just as frustrating as it feels, and maybe God doesn't want me to have my lung function, or he's teaching me persistence is key. I am not sure but I will find out. We also have this diagnosis to combat. What does this mean for me?? How do we fight it?? I am not sure yet I will find out soon. My immune system is temporally on the back burner because stabilizing my lungs and heart was priority. You have to be able to breathe, your heart has to be able to work so here we are.

I am still exhausted and my lungs hurt so bad from everything that has happened. I am resting and laying low in hope that I can get back to yoga and qi gong soon. Until then well we take it one day at a time and one treatment at a time. I had to step up my game in the treatment department but thats OK. Cleared lungs are good lungs. Alls I want to do is lay and sleep I am so tired from all of this but in between sleeping I am working so hard to get these lungs cleared and fight for my lung function back.

Life with a chronic illness is never ending, its constant work, and its worth it cause I am here and I am breathing.

I am gonna keep this short though as I have to make lunch, do treatment, and get to working on some things.

Love YAll
~Poppet 

Percs of hospitals

I have been fighting a lung set back since February, many many many rounds of different antibiotics, mixed with a med I was allergic to which was a rescue medication, and bacteria growing in my lungs, which triggered my POTS, and my heart to crazy. Everything I worked SO hard for, to get these lung going has been used and gone. Which sounds heart breaking but in all of this we have hope. I got to show Superman what my one med does to, apparently turning blood red is not OK. We had though this in past because my lung function drops dramatically but wasn't have much of an issue at home or so I though. Reactions don't usually phase me at all and I guess this is an issue to but if I'm breathing my OK I don't really bother with them outside of some Benadryl. Lessoned. Learned.

While I am at my third home, I am choosing to make this a positive expierance, I am choosing to find joy and happiness in a rather non glamours situation. No one wants to be admitted, but there are so perks to being in the hospital.

1. Nurses. Yes being raises by a nurse makes be biased, I am not sorry. However, if you take the time not only be nice to your nurses, you find amazing people that actually do care about getting you better and getting you home. I have met 3 people here that stood out, the one in the ER that took the time to understand my food allergies, and it turns out she has a kid like me so she "got it" on a level I needed, and apparently watched Wonderland as much as I do. As does the next nurse with the "pretty eye lashes" and sent Superman to find her with that description which is always cute how he can still find them. Turned out she's a step Mom and loves her family and is always looking for quick easy option. Which being a Chef with horrid lungs I do the same thing. The this last nurse I just had listened to my story and saw how I tied all my tattoos in to my story.

2. When I was fighting to get air in my lungs, to the point everyone gave up trying to hear the air and just get me meds, the first tattoo I saw was my Jabberwock. Which was no mistake or by chance, it reminded me I have the fight in me, I just need a little prayers and healing from God. Which all my friends started praying and its helped, big time. I am so so so thankful for my Warriors. Wonder Woman will tell you I have an army and she's right. I am human I even have my days where I have a little to much put on me and I question so much. Don't question just be.

3. I have someone to brings meds. Ok this sounds like I am being lazy, but I am known to get caught up in daily life, and forget a med or two, and go from there. Usually I have a cat meowing at me saying "mom meds." She doesn't leave me alone till I am up and following her and she knows which room has which meds I need, or she wakes me up to get some meds to. Here everything is schedule so I don't have those "oh crap" moments of wondering "did I take my meds??" "did I do subconsciously take them out of habit and forget??" Also I have a loud pump to tell me when my IV is finished. And its not "oh crap, bled my line dry."

4. Respiratory in general is great. Superman works his powers and always seems to figure out how to fix me. He's patient, listens to me and gets the updates from my personal life to see what crazy stuff I did now.  Not known for thinking much thru. I have one life to live I am going to make the best of it, and sometimes that makes me run on impulse. I always have but its harder to do now adays when you are always connected but I clearly manage. Its also nice to have those meds under control those are bit easier to remember as those meds infringe on Rubes time espically at night.

5. Humidified oxygen with out condensation build up. There is a difference between concertrator oxygen that turns room air into condensed oxygen, and liquid oxygen. My nose gets so dried out and oh gosh do I love humidified oxygen. Especially when I don't wake up to what sounds like a percolated coffee and know I have to go drain my tube and swap things over. Rubes isn't a fan of this either as it in fringes on mommy cuddles and purrs lol. She's a brat. Also the water can drop on her precious dry fur which starts a cleaning fest and evil glares for the rest of the day.

6. Will make me sound spoiled but Grandma cleans my room. As you see leading up to this I am usually sick for a bit before I get here and exhausted every option. So the coffee stains on the white desk and black makeup smears sit there for a bit before I get some clorihexadin and scrub or things aren't as OCDed as id like them to be so she really does come over and help out. We go at it at times because I don't know how to shut my mouth but at the end the day we do help each other out.

I am sure there will be more to come!!

Life does not always take you where you want it go, but it takes you where you need to be.
Love Yall
~Poppet 

Update

With a marathon of deadliest catch and how sick I am brought me back to the time I was so sick I binged the show for 24 hours strait!! I had a tunneled lined put in was super sick and i watched this show. Its become a major part of my life since then and before then to, but thought it was ironic things lined up. You see I am not doing so good, i have a strain of bacteria growing in my lungs and I am very symptomatic though I am so use to this I don't feel as bad as I should.

With a possible admit in my future and the drugs not making me feel better, i figured id update the general mass cause this is easier then a bunch of messages.

I am really sick and had a bad few nights, and with the stress of everything my body keeps going into what i call mild allergic reactions (my skin almost looks burnt), others might see this as bit more serious but for us its up the benadryl and don't miss a dose. I had so much meds in me the other night I felt like i was over medicated and it was kicking my butt. Then the side effects of the antibiotic kicked in and I was so out of it i didnt think my body could take one more med. But i ended up getting up to take that med because i was in and out of sleep every 30 mins. Its been exhausting!!

Yesterday since I was right next to Wonder Woman's work when I went to get blood work done I stopped by to say hey to everyone and the longer I was off benadryl the reactions started to settle in with the stress of what my life has to offer. I was going to stop and get Rogue One for use to watch but my body was running out of energy very quickly and I knew Wonder Woman would understand. It was also nice to stop by and see everyone as I haven't been able to make it up to the campus to talk to the students about this hectic life, and I also probably won't make it to pinning this year as my lungs need the TLC.

We are keeping a close eye on everything and I had to take a step back with my yoga, and trying to keep up with a bit of Qi Gong but thats OK, I will knock out this infection in some way and get back on the proper road. 

Love Y'all

~Poppet 

Organ Donation

It is Organ Donation Awareness month, though my team fights daily my ultimate fate is very harsh. My family makes the best of every moment with me, and they always keep safe environments as not to progress my disease.

No one's life is a guarantee, my disease's just make that very evident. The thing is though a person with no history of any disease can contract and infection and possibly face my same fate. I have time to wrap my head around it, my warrior have time with me but for some this isn't the case.

My goal in life is to break the stigma of donations, there are so many Myth's surrounding this and I am not going go into detail on this blog about it, but the main on I hear is "they don't work as hard to keep you alive." SO not true. They only mention organ donation after they tried every single way to keep your loved one alive. And for some this is when people here about donations for the first time. There dealing with grief, and wondering what to do from here. I wouldn't want to wish this situation on anyone. So my question is simple. What can I do now, to make break the stigma on organ donation. What can I say to help you understand??

I will never, try to break religious beliefs, I respect them and also ask people respect mine. There are religions that state you can't donate at all, and in some religions even blood donation is taboo and I respect it.

At this point alls I can do is tell my story and pray that people listen to me. I pray when people speak of me and my disease they stress that me and people like will one day need a life saving organ. I pray that the people listen, listen with an open heart and mind.

Though I live with a terminal illness that has destroyed my heart and lungs, I am an organ donor, in my will it says I am an organ donor, and have talked to my loved one's about this. I grew up knowing this is what you do, you save anothers life in a final act of love. Even with a disease my mind has not changed, yes my lungs are crap, my hearts a mess, but i still have other organs.

Please take the time to research this and please sign up at Donate Life or in America at the DMV.

Love Y'all
~Poppet 

What a crazy day

Edit: This was not posted the same day I wrote this and I ended up at the car place what I will call it at this point, in Jammie's!! No really target Jammie pants, sports bra, t shirt and over sized jacket and my handy oxygen!! We get there and Wonder Woman asked if I'd love to come in and it's like well why not at this point. After all I did that day, to get things squared away, made all these phone calls, text messages, and everything else. I figured why not see this to the end!!

While were waiting to hear from Superman, I found out this morning my lungs still need a bit of TLC. I just asked Wonder Woman, when people call me to tell me whats going (just wait ill explain) can i ask them for a second tire then?? My lungs are just exhausted. I was actually talking between breaths more so then normal, and trying not to cough in anyones ears.

It was maybe 6 am if that, and Wonder Woman rushed in my room asking for keys, I was kinda confused, me and Rubes were curled up and I got up took my oxygen off so I didnt have the hassle of everything and followed her to make she got my keys and such. I heard the bell on my keys by the time I got down the hall. So she takes me out side to show me her tire. FLAT. To the rim flat. I asked her what needs to be done, and she told me nothing until tomorrow she has to work, and can't take the time to call today as we all know she's a Nurse. I asked her if she wanted me to call the place we always go to, with the super nice dude that eats smores chocolate bars. She confirmed left and went off to work. Since it was so early I went  back to bed with rubes, and i had to wait for places to open. So around 730ish I got up called the place, found they don't tow, texted the All Father, and Wonder Woman. Some how got all the info I needed, got everything sorted, ate breakfast (while I was on the phone with Wonder Woman at one point), did my treatment, called texted everyone back, and now waiting for tow truck. My entire morning was taking care of her truck, trying to text her, who wasn't readily available cause work comes first, and the All Father was busy to.

My lungs are SPENT, I can feel the stuff stick to my lungs, and I have the infection already, so I am just resting them until, i need to make ANOTHER phone call. I already talked to home health to so now it really is just a wait game. Thats perfectly fine with me, my poor lungs hurt and was already trying not to talk between breaths. It's ok though. One of those days I am thankfully I am chronically ill and most of my responsibility is this. Helping my family out while caring for my lungs. Yes my first priority is what I did. IV, meds, and treatment. (I ended up having to call the car place back, and I had to talk to 2 other people at this point, and when the tow guy got there I had to talk to him, all the while why trying to talk properly and not show my lungs are kicking my butt.)

I am not one to sit idle, why I became a Chef, and my family knows I like to be free so they take me on errands ands such to get me out of the house and assure me last minute trips I don't need perfect makeup and hair (stab to the soul right?? no i am kidding). Even when I worked I use to make phone calls for Wonder Woman as she never liked to do that and I am decent with it at my best. The All Father needs someone to sit with the animals and I am there watching whatever it is, reading and just enjoying the company of animals.

You see if I wasn't sick I would not be able to do what I do. I wouldn't be able to tell a friend to come over and get her makeup done, I wouldn't be able to help my family out, and I wouldn't be able to follow my hearts passion. I always tell people I will change the world. I have NO idea how but I will do just that!!

But I am off to make yet another phone call,
Love Y'all
~Poppet