I'd love a cure

So Batman texted me the other day and asked me if an old man knocked on my door with a cure for CF would i take it. Now there was a bit of a scenario behind this but it made me think of 2 different scenarios myself.

A cure for CF would be amazing!! It's what we all fight for. We live for the day were we can say there if a cure found and the following generations do not have to go what we go thru. But here is the thing. There is a generation of us were the damage is done. And I asked myself how would I truly react to this. Will I still have a fight for transplant?? Will I still be able to make the list if there is a cure found?? I mean the damage is done. My lungs are poor and if I can't reverse the damage and my lungs are gonna be ruined anyways whats the point for ME to have a cure, but I would accept it for the kids. As much as I love life and love living if you give me a cure tomorrow my lungs are still weak and full of junk and bacteria. Now if I had the chance still for new lungs but there would be more progressive damage I would jump at the chance for a cure!! It would be the most amazing thing in the world. But I wouldn't just want it for me. There are so many kids with this disease that do not get a chance at life. Medical bills pile up, and there's always more meds to take and more doctors to be scene. It really is never ending. Me?? I had my chance at life, now I want a second chance. I want get back all the years I have spent sick. To get back to me passions in life and do what I have been doing all this years but on a larger scale. Get not only CF awareness out there and help raise money for the foundation which will fund research, but for POTS, MCAD, and food allergies. My time is dedicated to all this. We need a cure!! Not for me but for the generations to follow, for people who fight this day in an day out. For the parents that watch there kids breaks down and get sicker every single day. For our family members that watch us fight for the next day and sometimes the next hour. For the people who we've never met that fight for us in ways we will never even begin to see. THIS is why we need a cure. Not so some wild kid can take life for granted, for the families that just want to see their relative live!! I mean actually live and enjoy life.

Many people close to us know what are fate is, and it's scary to think about it. But I have always told Wonder Woman I would be blunt with this blog because I am no other way. Our reality is we will need new lungs or other organs as well to get a second chance life. 1 in 3 people with CF die waiting for transplant and it's heart wrenching. I would not wish this on anyone. I see how my life affects people. I see how my decision about my health affects people. I use to tell people I am alone in this battle but I am not. People truly worry they will have to live with out me and I will do everything in my power to prevent that. I don't care what I go thru. I will fight for my second chance or just my chance to live. To love, and to follow my passion in life. People want to save me but have NO idea how to even so much as help me. Me personally well you can't, just let me know you love me is all you have to do be there  for me. But you can help others, the ones much younger then me or not born yet. You can donate to the organization to help find a cure, or better treatment. You can be a donor. You never know who you can help!!

Do I want a cure?? Yes but I also want the next generation to have a chance at life and to fully live and breathe to their full potential. Also say a prayer for us!!

Love Y'all
~Poppet

A week in the life

Its been a week or so I think since the last update not a lot has happened but I figured I update anyways before people start wondering where I went and worrying.

Well I have been asking for a new mattress for a bit now, as mine is incredibly old no idea how old but I am sure its up there in years. It was in there before I moved to FL and no i don't live there anymore but that will tell some of you how old it is. I went to college in FL right after HS. So with my lungs being so bad I sleep propped on pillows and sometime in the middle of the night I sink down and wake up with quite gross lungs. Low PFs and have to fight to get them up in the morning and most days they don't always improve. So they were considering between posture pedic and sleep number and I was like well if your gonna spend money so I can have a good bed can we have one that sits up like the hospital because when I can actually sleep in the hospital I sleep very well because I am at angle. Also when I get tattooed at angle I breathe my easiest. I was sitting up to strait getting my one tattoo and I was to upright to expand my lungs. Those around me notice when I sit I am either hunched over to expand my lungs are reclined a little. So we decided on sleep number which I was blown away by!! Not only were the beds amazing the sweet girl had immense knowledge on the beds!! Oh my gosh!! I was impressed!! I am leaving her name out because I did not get permission to right about her so I want say much out of respect to her. But I was truly amazed by her knowledge and how every question we had she had an answer for and helped us pick out the perfect bed!! So now I do not only have a bed that sits up, I have one that massages which reminded me of my PT vest so I can jossel the junk in my lungs while in bed (amazing) but I have on that will keep me cool when I sleep!! I am so excited to get this bed and really if your reading this you truly made my day!!

Then mid week later in the evening or well early evening I would say I got a call from Batman which I still owe him a phone call which I promised on surgery day but my lungs are a bit week and last time I called him I got into a coughing fit got junk dislodged clogged an airway and was black in and out and thankful Wonder Woman was here to pound it out and clear my airways and my lungs are a bit weaker now from surgery not sure i could hold much of a convo but anyways. Well he popped by it's been a LONG time since I have seen him so I told him he was getting a pic with me because no one would know he stopped by otherwise lol. I said this to him so it's nothing he didn't hear. I love seeing my friends and Poison Ivey and her hubby stopped by earlier this week which I love seeing them. He has his own favorite super hero but I feel so bad calling him Dead Pool even though thats his super hero!! Like really last Christmas all his stuff was Dead Pool haha he's always talking about him to lol.

Then yesterday I woke up it was rainy and damp a bit chilly so I figured lets turn the heat on low in the sunroom so they kit girl could be comfortable. So I turn it on and the smell was horrific. Have you ever used a really old hair dryer that has a lot of life left in but sits for a week or more at time?? Well it was that scent but much worse. So I immediately turned it off because it was a triggering off my asthma. My lungs are a bit to weak to handle an asthma attack so I did something and went back for a treatment. No one was home at this time so I texted Wonder Woman frantically, and she was like you know it happens for heater and I am like NO you don't understand this is worse then normal. Then when Grandma came home I told her what happened and stressed the fact it was triggering and DO NOT TURN IT ON. So what does she do?? Turns it on so I had to miss midday treatment!! Sighs... Yep missed it. Also the smell was in the house so I was coughing and wheezing a bit texting Wonder Woman the details and she told me she could feel my frustration and of course take the pred and benadryl. Which i had already done and used my rescue inhaler since I couldn't sit on my 20 mins of treatment but I fixed my lungs right back to their current base line PFs so all worked out.

But I must get off here though I promised my sweet nursing seniors I'd make them pumpkin muffins by their request so I need to get a shopping list going and praying their is cans of pumpkin left around this time a year and I don't have to go on a wild goose chase... OH target trip!! I can do this!! And Wonder Woman thought I needed body wash as an excuse to go there lol Pumpkin it is and makeup...

Love Y'all
~Poppet 

Surgery update

I guess I should update y'all or start this update while Wonder Woman is at the walk I am missing today. I am a chair and supposed to be there but do to this surgery I can't walk far at the moment. So I have had my surgery and Superman let Dr B do the surgery I knew he had his reservations as she is a fairly new doctor but she was very kind and had me fully aware of absolutely everything that could go wrong as did Superman with my lungs. The group that put me under were also top notch!! I had no idea I had the best until the next morning. He new more about allergies and mast cell disease then I do. I am also certain that he knows more then Superman to. I had made the comment talk to Wonder Woman more then me about what can affect me as my lungs tend to be weak and no idea what affects what. There also times I have been on ativan and have no memory of what has happened and she;s the one there. Or Lady Sif whose said the exact same thing Wonder Woman does. If you want me to tell you what is going on hold off on the ativan and let me update you then give it to me. Anaphylaxis is one they give ativan for or if you so much as mention you have POTS you get it to so I tend not to admit I have it. So all was set and my nurse was so sweet. She told me I was a brave soul and as always I thank you but I don't see how I brave I am just an average girl making it thru life.

Pre OP is interesting or well not something I am use to. The tech does most of the care at first, they get you settled, they got me connected to their oxygen, the weight and the vitals and such and then you see the doctors. The first I saw was the doctor who puts me under, anesthesia and I said above I told them to Speak to Wonder Woman and theres strict notes in my chart that Superman has placed as I have mast cell disease and he left Wonder Woman with notes to and if you need him to call him. So he read everything and i got my Benadryl and Pepcid which helps prevent reactions from happening. From what I hear I had no Epi. So thats a good thing, from what I heard the surgery went well I am going by what I was told. I have no memory of anything. I was in recovery for a couple hours and I had finally woke up and there was this sweet nurse between me and someone else helping both of us. I just wanted my pain killers but it was between that and seeing Wonder Woman and I am sure you know what I took!! Wonder Woman!! I finally got my meds. I remember them rolling me by and was so confused why it was so dark outside and they had to explain to me that it was just that late!! WHAT?!?! I remember very little clearly.

So I am finishing this blog quite a bit off!! The pain is still bad and I had gotten a virus and had to go to Urgent Care to get cared for a bit. I am sure most of  you have gotten pictures!! It's some kind of skin virus that is highly contagious and being I have a poor immune system and the post op waiting room was SLAMMED it's hard telling who or wear I caught it from. I also had a nurse that told me contact isolation was optional as its only there to protect me. I told her since I had CF that no it is NOT optional and if you come in with germs and I get sick its your fault. She was in every hour that night, or with a first time nurse. Recent grad and licensed nurse who I liked much better. I got a nurse change in the middle of the night and finally got some sleep around 4am. I was also doing a LOT of breathing treatments and think I saw 3-4 RTs which I am ok with lol please get these lungs working. I felt so bad for my sweet nurse though. I had just done PT which shakes you and applies pressure at the same time. Well it made me sick and every time she went to discharge I was getting sick. Which made me cringe because it hurt so bad and I felt so bad!! She got me some Zofran!! My favorite anti-nausea!! I was discharged by 8am and my first night at home was beyond difficult. I couldn't lay on my back as I had so much pressure under my lungs I couldn't expand my lungs and 3 minutes into PT i was hanging over the table to the point I stopped and scared poor Wonder Woman.

Lung wise?? I don't feel as bad as I should until today. My PF are ridiculously low and borderline concerning but something I was warned about so not freaking out. I just take it as it is. I couldn't do my PT for 6 days so I was dependent on manual PT when I let someone touch me and my flutter frequently. I have been on a lot on benadryl and pain killers. I quite like the painkiller because I can't feel how painful my lungs are. I can feel my incision though.

But I am gonna end this here before it gets to long.
Love Y'all
~Poppet

The All Father Visits

The All Father stopped by today its always lovely to see him and its always nice to talk to someone with my train of thought haha. We have the same wave length we think on and was updating him on the latest gossip!! Which really isn't much lol more so look at my latest art project then anything. But since surgery is coming up he wanted to see me before I go in and I asked him he had the chance to stop by after wards. But we got to talking about goals and things to occupy my mind as not to thing about surgery. Though in all honesty I am not worried about surgery I am worried about my lungs afterwards as Superman as throuhly warned me and Wonder Woman what could happen. I have never seen Superman so worried!! Even when I was in V-Tach that one time once he saw I was OK an alert he was fine!!

I know this sounds trivial and I told the All Father this to, my goal is to be up and alert so I can feed my fish!! Wonder Woman face "seriously" because it's the silly app where i have a virtual fish tank as i can't have a real one and i LOVE fish. He goes well it's a goal!! I told him my lungs can't be bad after wards because I NEED a new tattoo and if my lungs are bad I can't have a new tattoo!! I don't care if it's not as major as the one I have planned, I will settle for Ally Umpkin as she's planned anyways but I was saving her for a later day so I could get my JabberWalke and the Mad Hatter. No really this is how my brain process things lol little to major. I am also living little plans out to that I don't want to talk about on here. These are 2 little things I want to do like right now!! A few other things as well. He told me my thinking was on the right track and it's always good to have goals then of course my art projects that always calms my mind. I was working on a felt project when he came in then I started showing him all my skulls lol. Seriously Wonderland and Skulls the way to my heart and well coffee.

He also wished more people saw things the way I do. I have a much diffterent out look sometimes I think its because I am chronically ill but more and more I think it's because I put myself so much into food, makeup and art I stop thinking of things around me. I realize this when I talk to him sometimes I think we are a lot a like in many ways. We both love are cats and we both know how to settle are minds doing different things!! Then our love for animals!! Which my sweet girl just bit me!! lol But one thing we both agree on is that life is truly beautiful and there is so much here to enjoy we just gotta take the time slow down and just see it. In total randomness my hair is a shade darker then my food allergy awareness shirt!! How awesome is that?!?! Really its the little things. But since my sweet kit girl has stuck a claim to my bed and me I am going to get off here and curl up with the brat.

Love Yall
~Poppet

So today is Day of the Living National Organ Donation Awareness Day. I am not sure if this is American or English but I guess it doesn't really matter. No matter where someone lives organ donation awareness is the first step at helping people get a second chance at life. Not many people know about this at all, or it tends to get over looked until something tragic happens and families are forced to make a heart wrenching decision. If more people know about this and sign up before hand, or even write it in their will it will keep a family member from making the decision and can save up to seven lives. The other thing is your more like to NEED and organ then you are to donate one. Which is kind of a scary thought!! I know this topic tends to get quite controversial as religions and such get involved and such but this is something very close to my heart.

I have been told this will one day be my fate, needing new lungs. I mean my lungs are gross!! But I am still functioning and last we checked had a decent lung function. Which we do keep an eye but we have so many ways at hand write now to keep my lungs clear and keep them healthy or as healthy as they get. I am to stubborn to let these lungs stop me. Right now they are a bit rough because someone thought it was brilliant to let me sleep for 4 days on dilauted and let me get away with not using my flutter for two days strait... Worse thing I could have done but Wonder Woman is right I probably would have fought them anyways and when I was awake I was so drugged out of my mind I had no idea what was going on... It was bad.

Another reason I post this on here, when you live with a disease especially a rare one you tend to get to know people around you who are much sicker then you and you watch their fight. You wish there was a way you can get everyone their second chance because they all have such a fight in them. They all want that second chance to live and love fully. But with the lack of knowledge out there not everyone on the list gets their second chance. Which is so heart breaking!! Every last one fights day in and day out, prays every day to just get the call that they can live again. I wish I could change all this and just make everything better because I really do hate talking about all this or even thinking about it.

For those of you who are sick or have bad organs you can still sign up to, you can donate more then just your major organs!! Or at least give the doctors the option there is so much more out there then what I am familiar with... There is an entire website dedicate to just this which I really hope Wonder Woman does not read this because I was told by Superman no more googling things!! Not that it stops me, most of the stuff I found was for a close friend of mine who need information on all this for someone who was trying to qualify. But find the sites and sign up!!

But I need to get off here the kitten is getting fiesty and trying to shut my MacBook while I am typing and I promise for a better update in a few days

Love Yall
~Poppet