Wonder Woman and Grandma are re-arranging my room right now, because I stepped one foot in there and the dust is just awful that they are stirring up and I am just taking meds to suppress everything so I am sitting here watching Christmas movies that my Grandpa use to love. If you know me, you know I NEVER mention him, he was a huge part of my life and taught me the true meaning of Christmas. I remember being 5 and him sharing a Christmas dance with me to his favorite Christmas song. Which Wonder Woman has to. We were out a couple weeks ago we were Christmas shopping after she was sweet enough to by me a Bagel and coffee, and we were coming back and I had made some obnoxious remark about people who come out to shop who never ever come out any other time of year. And she pointed out, Christmas has become to commercialized and its not what Christmas was meant to be. And she's right. It's supposed to be the season of hope, joy, caring for people, happiness, being with the people you love. Oh and donating to the salvation army, I am almost 30 and still bug her for spare change to give to them because i never ever have change on me. Then I remembered a long long time ago I was told on Christmas all war pauses for the day because it's a time of joy. I can't help but think what the world would be like if we all just stopped and this thought all year around. Why don't we have joy and kindness year around. Why don't we take the time to surprise the people we love?? 

For me?? This a really hard part of the year for me. Disease wise I mean. I am constantly on benadryl, steroids, I skip one pill and I am coughing and wheezing up a storm. I break out in a rash the moment I skip a dose of benadryl and then wonder why I walking around like a zombie. Every Christmas season my lung function drops a bit more and I get it. I just recently sent Wonder Woman a text "Tis the season for chronic benadryl" and she laughed and agreed I think more so because she gets my sense of humor. I also came out of my room this morning and stated I am dying my hair today while you help Grandma. I was talking what I deemed normal and she looks at me and goes "not with that breathing your not." I had my classic response "how did you know?!? NURSES!!" So needless to say my hair has not been dyed yet today. 

I just got interrupted to help out a bit or OCD my room. I have bad OCD and things go where they need to go. Now my breathing is a bit poor so I am going to get off here and treat my lungs and allergies.

Love Y'all

~Poppet

Quick Update

I have come to the conclusion you want me to fangirl let one of my favorite super heroes appear in a TV show... Better yet a DC ones. Its not often I get comics anymore because well thats a lot of money. To make this even more strange my favorite comic book author is Todd McFarland oh what I would do to meet him and get him to sign my favorite comic book. But anyways

Christmas is slowly approaching and I need to make things, some of my gifts are made, and often I have no idea what to make so I search until I find something perfect. Which I have, now I need to dig out supplies which I am just to tired to be bothered with at the moment. I had a long weekend of allergic reactions and business. Yep thats 2 reactions this week so no more new food for me. We got these little cookie mixes with mini frying pans, well their cast iron skillets really and found one that was "safe" well it wasn't I'm like Wonder Woman my face itches and I can't breathe. Ssssoooo lots of benadryl, steroids, and breathing treatments later I am listen to a metal Christmas Station thanks to Lady Sif and getting thru yet another reaction... To go out the next day to go the pet store where they are having an adoption thing going on. I made friend with a beagle I wanted to take home but I am not aloud to have a new dog until I can fully care for one. But there were about 3-4 dogs, a bunch kitties, and yes I petted them all and started to wheeze and we still had a mission to do. Get Rubes her stuff she needs, and apparently a water bowl with skulls on it for Christmas. So I had an asthma attack. So needless to say I am exhausted and want to do nothing but sit here, with my raw throat thanks to my oxygen.

Then our new beds are scheduled to come and I need to rearrange my room, which if you know me this means Wonder Woman and Grams gets put to work and frequently get kicked out so I don't get sick. To make this situation worse for them, I have OCD and need things to be a certain and went into detail with Wonder Woman exactly how I wanted everything with room for Rubes to get on her perch that the All Father made for her, and the bed in a certain place and all the works. So now I owe poor Wonder Woman lunch at our favorite pizza place because she also just helped me get a TV. She's deserving I don't mind at all haha.

This has been a crazy busy month and we all still have so much to do, and week to get everything done, plus me doing what I need to do, plus Christmas. I am a bit over whelmed but art always keeps me in line and thinking clearly so I think I can handle this. I know Wonder Woman can. I remind her all the time she the nurse has me trained to handle whatever life throws at me and she can to. It's what we do. But I guess I need to get off her and start dinner so I can dig up some yarn.

Love Y'all
Poppet 

30 facts about me

I am always saying there is more to me then my health but I don't really ever post much about who I am just how my disease affects my life. So I figured why not post facts about me so you can see who I am not just my disease. So here we go:

• I am a huge KISS fan but hate this line up of KISS.
• I love art. Whether it is plating food, makeup, or working with arts and crafts I love it.
• I am a Chef and have been cooking since I was 16. Mainly for the ICU Wonder Woman worked at but it sparked a fire and now a personal Chef and certified. 
• I was more nervous to dye my hair Teal then I was getting any of my tattoos. 
• Animals are my world. 
• Both of my BFFs live out of state.
• Coffee is my life. I alway have a cup!! And yes I am addicted to Starbucks.
• Im a Christian and still dress off beat.
• I love Etsy but mostly shop on there for Wonder Woman. They have some awesome nurse stuff on there!! 
• I play video games until my hands go numb. 
• Alice in Wonderland meets Sugar Skulls. Enough Said. 
• I was a metal drummer at one point.
• Adult Coloring Books!! I spend so much time coloring those things. 
• Robin Cook is my favorite author. He writes medical mysteries.
• Favorite book is Coma by Robin Cook. I read it in 2 days. 
• Hunger Games Fandom!!
• I have collected Rubber Ducks since I was in HS. There everywhere. 
• I love Octopuses. They are evil genius escape artist. 
• I want a custom fish tank. Preferably with an octopus but horridly allergic to crabs which is there favorite food. 
• My heart belongs at sea.
• Pirates!! Pirate anything. 
• My tattoos tell a story about my life and how precious time is.
• My favorite flowers are Day Lily or Cala Lily. There both gorgeous. 
• Black Labs are my favorite breed. I have had 2, there a handful but worth it.
• I love photography and take thousands of pics. Last time I backed up my phone I had about 2000 of them and Rubes is the main one I take pics of.
• I love dragon fly's to the point they are tattooed on me. They remind me of my Grandpa.
• I want to go to England.
• I was a cheerleader for a year. Not my cup of tea but I had fun. 
• Speaking of tea my favorite is Lemon Ginger. 
• I drink my coffee black, I have since I was 18. If I got to starbucks I add Vanilla and Chia to my coffee. Other wise its strait black and oh so good!!

I guess with that I should jump off here and hide Wonder Woman's Christmas present...

Love Y'all

~Poppet

Christmas is Coming

So I got the brilliant idea to go shopping on a Saturday. What was I thinking?? My makeup was on point this morning with no intention of going out is what it came down to. I have been exhausted, congested more then normal and my PFs are really poor and my chest has been aching. Nothing concerning in my world. OH and I had an allergic reaction this week to God knows what. Thankfully a bunch of meds I was better. I can't do a thing with out my oxygen being turned up so I got this lovely idea. Do. My. Makeup. It was a pastel shimmer rainbow. So I decided Coffee and Christmas shopping for my CF nurse. I figured whats it going to hurt?? OMG not only was the coffee shop busy, but so was the store. It was to the point I called Wonder Woman at work. CALM ME DOWN. I am panicked and I need to get thru this and does my nurse eat chocolate or candy?? I can't recall at time I have ever seen her eat sweets so I wanted to ask someone that knows her better then I do. So I did get her some cute but usable stuff. And being a Chef I have this habit of seeing things thru the eyes of Chef. I see something and go CUTE!! Get up close and go blah not cool not this Chef approved. But there are these cute little frying pans you can throw in the oven well there cast iron and oh gosh they are perfect for people who can eats eggs. I have quite a few around here at the moment. But anyways.

I have been trying to get things in order as the holidays are coming. I personally hate the holidays. Yes I am a scrooge but I keep things to myself. As for the above getting people gifts?? I get people I love gifts anytime of the years so an excuse to get someone something cute I am down. I got Lady Sif a collection of things and I am making sure I am healthy as I get really so I can see her soon. But back on topic, Tis the Season for flared infections, asthma attacks on already weak lungs and allergic reactions. As history has shown my lungs always decrease a bit around the holidays because people pop by. Especially seniors from church. Yes I am Christian thats not a fan of Christmas. Let me explain this a bit better, I hate the drama and commercialization of Christmas and I believe there should be peace on earth years around. I liked Christmas much better when my Grandpa was still alive. Now its Wonder Woman upset because people forget how sick I really am or I get left out as an adult with Christmas because I have food allergies so I just pamper the ones I love. I mean truly love.

And in other news I have been dubbed Catwoman by the one and only Batman. This came to pass this week I think. We all know obsessed with hero's I am but I found it quite fitting because she is a mix between a villain and antihero. Oh and my one BFF I call Poison Ivy so it's fitting. No complaints here. And no it's not gonna change alias on here I am still Poppet at the end of the day or Tinker Bell lol.

As for my health, I have been cleared with my surgeon and I only have more glue to come off and then I will be good. I have belly ring back in, my cartilage ring back in and though my PFs are still low that was to be expected. I was warned about this so I have no right to complain. I have gone back to normal life and as hard as it is I have even started washing my own hair again which is a bit much on me but I will take back my life some how and if washing my hair is where I start then so be it.

But I am gonna hop off here to cook something.
Love Y'all
~Poppet 

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

Everything is Teal

So since I have surgery coming up and hadn't touched my hair in a a few months and even though it looked really awesome growing out. My stylist and the other girls there loved it, I figured lets go ahead and touch up my hair just in case my lungs get worse and we can't do it in the following months. Me and Wonder Woman (I mean who else really) decided OK its Sunday we'll dye my hair when we get home. We had went out to lunch and since there was a Target, a Barnes and Noble, and a Best buy right there we decided to stop there to so I was a bit exhausted. OK so a lot exhausted, we spent a bit of time looking for some movie with Jeremy Renner in it while I was convincing her the right movie to buy was Flash Gordon which they also didn't have. 

So we got home and set out to dye my hair. I mix it with a Wen shampoo to deep condition while its dying because i use a lot of heat and tend to tease it a bit at times. Lately its been hats and bandanas as early mornings and me do not mix at all. I still comes out this deep vibrant teal and usually protect my little area very well get everything out of the way, make room for Wonder Woman to help as the area is small. I dye the front half, she dyes the back and by the time she had come into my room, I had drop dye on my pink pants, on my floor, and dyed my flutter teal. How I did that I have NO idea!! I hadn't even touched it but it now has teal finger prints all over it. We finally got my hair and my skin a gorgeous shade of teal. And everything in that area. 

We were trying to figure the best way to rinse my hair with out me hanging over the tub, which means my mucus drains and clogs my airways, which is good it drains bad it clogs, and I usually wash it in the sink. OK well this is a stainless steal sink and i figured lets not dye the entire kitchen teal, so we figured lets stand me in the shower and rinse it that. Within the minute we turned it on, I dyed her shoes teal which were black suede i think they are OK though, the white tile floor is now teal, my PICC cover was soaked thru, we soaked the floor, and some how her white shirt stayed white!! I was just blue. It was bad!! I have pics of this I had her laughing so hard. So I was like you know what lets just let me take a shower and clean it out of my hair and wash it again and we can figure all this out next time. Theres still a spot on my arm I can not NOT get off. And oddly enough its my Pixies hair. Wonder Woman calls her my alter ego because I was tell her I want to be free and my nickname is Tinker Bell. So her gorgeous black hair is teal. The floor is teal, the bath tub is teal and my flutter is still teal!! Not like I don't have 3 or 4 floating around here somewhere but still... 

So I had Wonder Woman check my dressing as wet dressing are BAD. We were good but I think I need a new shower cover. So I somehow scrub all this blue off me, and get all cleaned up after this epic fail. I find out I can rinse my hair in the sink... 

So now that my hair is all nice and teal as is everything else. Except for her white shirt, my hair is now ready to last the next couple of months. Now alls I need is some Harley Quinn jammies small enough to fit and we are good!!

Love Y'all

Poppet

Surgery is scheduled

Today has been crazy!! Not only was my doctor running super late, i left my book at home!! I have spent a long time looking for this book and finally got my hands on it!! To leave it at home!! I had taken a decent dose of benadryl before I left to (oops) and was trying to give my poor Grandma directions while being a bit loopy. Wonder Woman wants some at the surgeon with me so Grandma gets enlisted. (Grandma is a super hero name in itself.) Then I had to explain how bad my lungs were doing today which always becomes some kind of argument... But you sound fine... you didn't even listen to them your basing it off how I am talking and its like no you don't get it leave me alone. I want my doctor so I can go home and take MORE meds so I can breathe better... No it's been one of those days. Half asleep trying to have a conversation I am sure is not making sense but some how succeeding. Sorta.

But I got my surgery date. Everyone has the day off so far but the All Father and Posion Ivey. I am hoping to see them both soon though. Last time I was in I was on so much dilauted I was texting in code even worse then "Criss" as most people call it. So he came to see me, I felt so bad they had just giving my a dose of dilauted and was seeing all these things on the wall. (I was on this for a couple days by then every 3 hours) I think he knew and understood I just felt so bad. You rearrange your schedule to come see me and I am paying attention to a laser show on the wall that you can't even see!! I know how bad this sounds... Thats OK I had the meds at home and took a pill one not and ended up pushing my cat out of bed cause I thought she was something else and immediately got up to bring her back to bed I felt so bad. And we are so off subject.

I know my Grandma is going to the hospital to sit with Wonder Woman. If you haven't figured out yet I am super close with her and this is a lot for her to take in. There a lot of risk involved but I am confident. She's finding the doctors I and Superman wants. Calling him, calling the other doctors, and she read the fine details in my chart. Superman requested Wonder Woman to be there because she has never hesitated to go over there head call Superman and get things done. Or the time she new my PA George and told him everything she wanted done and it miraculously got done. But since I have been back on Steroids lately I am of course complicating things a bit. So after I found out the date and realized how close it is to the walk I had to of course do what I do best. Harass Wonder Woman. I feel so bad for her i really do, the walk is that Saturday. We are chairs, and we got represent ourselves some how, and I am a bit nervous about the whole MCAD thing so I made her promise no matter what she has to go to the walk. There will be no excuses she has to go!! I will be in good hands. She told me she will and I really hope she is going to.

So I think everything is set but my weight. It has dropped again. Which breaks my heart because I have worked so hard to get me weight up and to what?? Lose a pound. I am really not OK with this. And I am assured "it happens." Which OK it does but where do I have weight to lose?? And it gets comical because everyone I tell reacts in there own way. Poison Ivey gets upset with me, Lady Sif finds me shakes, Wonder Woman gets mad at me for complaining, and Batman offers to fatten me up. I sit here and just laugh at the insanity, and my little group always proves to me we all have our ways of coping. And me?? I have such a will to live I will stop at nothing to find it. Even if my lungs are getting bad and these next few months will be a battle, I have things I need to do and nothing will stop me!! I also can't disappear from Starbucks for 3 weeks again either.

But I guess I best get off here make some coffee and grab some ice cream.

Love Y'all
~Poppet

Live fully!!

It's so much easier being the patient. I have been on both sides of this so I can fully say this with confidence. It's much easier being the patient then it is watching someone close to you be sick. It's heart wrenching to hear your loved one is ill, and they are gonna be ok when they look so weak and frail and you fight to believe the truth verses what the reality is that you are witnessing.

My lungs are so weak. I am short of breath on my oxygen most days and have a lot going on in other ways health wise. My lungs ache, I get exhausted so easily, and alls I want to do is function normally. But I find myself more dependent on oxygen which makes me nervous what the next few months will bring. Wonder Woman has all raised my that quality of life is so much better then quantity of life and I keep trying to explain this to people they just don't seem to get it. "Don't you want to live to be old." I do, but it is so much more then that. I want to live more then anything which is why I fight for every option that is at my hands no matter how terrifying the reality can get. I am so blessed to have such a strong team behind me, and I am so thankful for Wonder Woman who has done everything with in her power to give my a quality of life, including driving almost an hour away to get me pizza!! She has sacrificed her entire life to help me live a life I want to.

So often I hear and watch people completely take life for granted. They don't sit and enjoy what is right there in front of them. They do not pause to enjoy life. They do not like at life with wonder and amazement they look at it as something to get thru. But it's not. Life is not something to get thru. It is something to be enjoyed and celebrated, its meant to smile, love deeply, and do everything you want to do right now. It breaks my heart to see people wasting their lives away doing nothing because there is always tomorrow. Which tomorrow is never a guarantee but thats not what this is about. Life is about doing what you love no matter what. Yes I get it people have to work and such. I truly get it. But that doesn't mean you can take time for what you want to do. Make the time in your life for the people you love, the things you have a passion for, the here and now. The movie you want to see?? The person you love?? The make up you need oh so bad?? New tattoo?? A book?? I am sure you can list on your own mind is endless. But thing is so often we forget this things are what make life worth living. There is always a way to make it work you just have to find it.

There is so much I want people to realize that I have learned from this disease. And not that life is cruel to give me or you something so tragic. Yes living with this is tragic. I see what it does to the people around me but I know at least for Wonder Woman she helps and learns that life can be beautiful down to the excitement of finding a new book or trying my new creations in the kitchen. There is so much Cystic Fibrosis, MCAD, and POTS can not take from me. My soul and my desire to succeed in life. Also my desire to love with my entire heart and find a way to make life truly beautiful.

But I must leave you with this because it's one of those days where my lungs are gross and I need to style my hair!! Oh and find the right makeup looks that speaks halloween and sugar skulls/day of the dead.

Love Y'all
~Poppet

Always Something

I saw Superman yesterday, and it turns out that my minor surgery is going to be major. There is a lot going on with my lungs and my MCAD. So to be put me under is a quite dangerous. I didn't even begin to comprehend how dangerous this is going to get. I mean do realize going on a vent with my weak lungs is dangerous but it so much more in depth then that. He does not like the idea of all this and put in my chart very strict guidelines in there for everyone to pay attention to and made it clear Wonder Woman needs to be there. Seriously they are the dynamic duo.

My lungs are really bad. I get short of breath on oxygen which apparently is not good at all. My peak flows are low as it is to. I can't even lay flat on oxygen and when I was in this past month my lips were blue when I got up on an oxygen of 3. Which is why I tend to wear a lot of lipsticks of the dark shades even though they always been my favorite I rely on them now and blush. So putting me under is going to affect my lungs in a bad way. It's going to cause inflammation and such in my lungs. To the point he wants me back in 3 months to set up some testing. Which I can handle all of this. My surgeon was like oh we'll keep you for a couple days cause of your lungs. Looks more like 3 months of recovery lung wise, and unsure of how long I will be in. I always push for out as soon as possible. I have mucus in my lungs so pulmonary always pushes out for as soon as possible and since they know Wonder Woman and have worked with her for years it helps my case most times.  So thats my lungs.

Now to make this much more complicated. I have something called Mast Cell Activation disease. Mast Cells are what burst or degranulate to cause a severe allergic reaction. Throat swelling, tongue swelling and well shock. I have tons epi, benadryl, and steroids on me at all times at home. But going under the wrong can cause me to react, so theres a way it has to be done from what I gathered. It has to be done very slowly and they need to watch me closely. Superman has all the right doctors requested, and I have a very specific pulmogist at the hospital i'll be at requested to. I request him every time I go in because the last thing someone wants to do is coming in to my room and argue Superman's care plan for me. He's spent years keeping me stable, this is what works for me, they aren't touching it. There's one other doc there I will accept but I do not know his name or the PA. Though I do wish George worked at this hospital but he doesn't he was awesome in the ICU. But we don't talk about the ICU to this day.

So needless to say I got a lot going on. Which I can handle all this I truly can. All my friends will tell you I am fighter. Or Wonder Woman will tell you I am to stubborn to die. I do call her here and there and tell her I am dieing and she will always remind me of that. I am so worried about Wonder Woman though. I know how my health affects my friends and family. I see it and I don't ever mention it but I watch how everyone close to me processes my health. They all have their way of coping and there all different, but Wonder Woman has been through everything with me, from fighting for answers to sleeping by my bed. Lady Sif and the All Father have to. They were coming up to the hospital pre-picc line. It always breaks my heart trying to explain my health to people especially those I love. But there are only things I tell to people that I love. I tell everyone else I am not sure how to explain my health and my life.

But I must get off of here for now
Love Y'all
Poppet

Small update

Appendicitis has taking everything out of me, as I always nautious, in pain, and not eating like I should. Which as I always say, life goes on and I will be ok. Though all of my clothes are to big (which is a terrible thing as I had no weight on me to lose) I some how make it work. For the most part my POTS is under control. I make sure everything I eat is high in salt as I am not eating as frequently as normal, and all snack are high salt. Thinking I have things under control, the day I see Superman my lungs flare. It's here say on why they are messed up, Wonder Woman says it dust as she was stirring around the shelves, or it could be the building. But there's a mix of benadryl and steroids in me. Which is terrible because steroid use can complicate my surgery even more so then then my lungs alone.

So when I went to see my surgeon, she asked me about steroid use for lung disease, and I told her it's hard to get off of them at this point unless you give me IV antibiotics to knock all this out and help open up my airways. But here I am on steroid.. Anyways, so steroid use and Appendicitis is terrible. Apperantly it can reduce swelling while there is still an issue at hand which I am sure I have already covered that as we are 3 weeks out now and its still bothering me. Then during surgery steroids mean it might not heal properly!! The staple could leak while healing. Basically when they remove it, they staple the area, and if you are on steroids it might not heal properly and cause the bowl its connected to, to leak. Which isn't good so I am trying to stay off them desperately. And though I have started up my Doxi again its not always strong enough to keep me off steroids. It does get the job done enough though which I am normally happy with, though now I am bit worried. As if my lungs didn't complicate things as they are, there is the added worry. Yes I know for most reading this it tends to be a bit concerning. Honestly though, I am not to worried. Why?? Because one its in God's hands, and two i do have faith in my team. My surgeon is intelligent and is not taking any risk and is making sure pulmonary is there if/when I need them. She's making sure my lungs are stable before hand and is doing everything in her power to make the procedure as safe as possible.

I have always had faith things work out how they are supposed to and that things always have a reason to happen. Though at the time we have no idea why, they do. I can't imagine what this is prepare me for, or if this preparing other people for things. But one thing for sure is I am ready for my freedom back!!

But I best get off here.
Love Yall
~Poppet

All at once

It's been one thing after another lately and it doesn't seem like its going to end any time soon. I had the hospital, and 2 weeks of rest, and now its weekly appointments, until we figure things out. I am sure I mentioned in the other post I have appendicitis. Apparently it's no longer suppose to be hurting and my steroids for my lungs have complicated things. In all of this, Wonder Woman has sacrificed a lot in all of this and is continuing to sacrifice things which makes me feel horrible and guilty.

I have been sick for a month now which means most of September, which her birthday is in September, we also needed to get her a skirt for her work. The weekend we were going to look for her a skirt, I ended up in the ER, so we never got her a skirt and I think we had pushed it off earlier int he month for some reason as well. I don't remember why but I don't think it was my health. Then when I was sick I pretty much slept for 2 weeks, it's really all I did. Well sleep and eat. Doing a bit better now. But one day I was sitting there and I realized we never went to get her makeup gifts from Sephora and Bare Minerals. I had texted her saying hey we forgot to do this and she of course was all well we had other things going on... It's like yes me!! She assured me I was more important. I just always feel so guilty she was to drop her life to be with me because I am sick and in the hospital. Or I am sick and can't get out of the house because it could put me there. It breaks my heart she is constantly sacrificing herself when she deserves the world. I just want a cure to make her life easier. Wonder Woman deserves the world and I can't give it to her.

So I have been on pain killers recently and can't really do anything which sucks. I am stuck in the house all the time unless some can drive me, and I try to stay off the painkillers during the day. Which gets a bit frustrating because people are always on top of me and I just want to be free. Even more so then I usually do. Wonder Woman did get me out for a bit this weekend she took me to Target, and she offered me a scooter but uh well I declined like I always do and regretted as my lungs are so weak. But I made it and got what I needed or well I found the halloween stuff and found skull cake pans and a ton day of the dead stuff!! I only got the pans, but I hope there is still stuff there after halloween as i LOVE day of the dead and the real creepy skulls. We also got our hair done the next day which it was nice to feel human again!! Love her for making me feel human again, my bangs were down to my nose, my hair was really dirty, I was in a bit of pain so I ended slouching in the chair waiting for Wonder Woman hair to process. I was happy to be out and again feel human!!

Then yesterday was a doctor day which I am not going to get to into what's going on at the moment. I do not have all my info and dates all set yet though I do have a rough idea, I know texted some of you. Well my doctor is on the 6th floor... When we were done the elevators were broke... The doors wouldn't open all the way and wouldn't close either. So down 6 flights I went. I was huffing and puffing, my chest hurt, I was tired, and wanted to collapse but I made it. The downfall was today I am in so so so much pain. I hurt so bad. My chest hurt, my lungs hurts, and alls I am doing is clearing my lungs of the stuff that broke off and is clogging my lungs. I have been on benadryl almost all day which it's whatever at this point what am I going to do about it?? Things happen.

But I am getting off of here to get in the comfy chair!!

Love Yal
~Poppet

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

blah

I am beyond exhausted as I have been on steroids for a week now and I have attest 3 more days to go. I am not sleeping well because of them and before that how poor my breathing was. The only day I slept was turning my oxygen up to 3 which I think I might do again. My lungs ache because of plugs, my chest keeps aching because of how much I have been clearing my lungs because my airways are finally open enough to get some things out. The secretions are so thick that it just hurts so bad when it settles and theres not a thing i can do until Wonder Woman gets home. I woke up miserable!! I hear I have been quite bitchy to. Batman was sweet and sent me a very lovely song again which always seems to cheer me up. He also knows how to deal with my not so nice attitude at times.

I am sitting here drinking coffee trying to get enough energy to finish writing this let alone get up and cook dinner. I have eating much at all today which is not good for me at all it will effect my weight, my blood sugar, my blood pressure... So I will cook a nice lovely meal here soon, high in carbs, sugar, and protein. Thats about all I can do at this point or just eat ice cream. I have no idea about the whole ice cream though as I eat 2 spoonfuls and feel quite awful. So I have to sit there and force myself to eat. Or I eat to much fat and not get enough enzymes in me and I am in pain. It feels like this non sense is never ending. Which well its not but it's a bit worse then normal. I am just so spent!! I just want to sit in my chair and read a book about my newest second favorite ship and learn all about this amazing woman but I can't concentrate because of my steroids. Yes this sounds whiney but steroids are an awful thing and these are side effects of them. Though Gma and Auntie brought me home a sock monkey and two rubber duckies to sorta cheer me up. Which was nice of them because I yelled at my poor auntie cause she didn't remember I was allergic to pineapple. Something so simple makes me so angry on these meds. I mean I walked down the hall last night because I forgot something remembered i have to take my new meds which is just the worse and in front of poor Wonder Woman I just scrame FUCK yes thats what I do and she understands what steroids do to me and she just wrote it off as nothing.

I also a bit upset my hair isn't clean. I haven't had it in me to even ask for help and it stresses my lungs anyways and the added stress of my swelled airways I don't think I could handle it at all, or that wonder woman has been a bit busy lately and I feel guilty asking her to help before tomorrow. But I guess I need to get off here and start cooking.

Love Y'all

~Poppet

Small Update

So Poison Ivey started a Facebook page for me so I figured I'd try to do a complete update for once. Between the new med, and a tattoo that Wonder Woman was kind enough to get for me to memorialize my pup Dog Dog. Which it destroyed me when she died and there was nothing I could do to help or prevent it. But it taught me a lot about how animals are treated so much better then humans when it comes to end of life care. I have seen animals and humans go thru the same thing... OK anyways before I start to cry.

My health has been a bit poor and I have spent the last few months trying to get off this oxygen again but its always near me or on my face. I have told Wonder Woman, me and her, wii fit... She's a nurse and good at keeping me in line. It will also help my lung function and force me to sit down when working with someone else. Its hard and difficult but I can make it work. I am determined to make it work. Inspite of how terrible this new med is. I am determined to keep my lungs strong. People need me and I have so much to live for that I will never let this disease win.

Im not sure if I posted recently I had a bit of a rough weekend and early week, I mean I am not bad enough to tell people I do not feel food but bad enough to be on steroids for a couple days and laying around on oxygen. I am on my antibiotics to but when am I not on those. I was sitting here short of breath, and couldn't function so I just went and started my meds or well was told to start my meds to get me past this little hump. Its been a bit over whelming lately. I am doing all I can to stay stable, to stay functional, but I find that even cooking this week takes everything out of me. But I did get to go see Poison Ivey and clan!! Which is always such a treat to be able to hang out with them. I even got to go see them this time!! Which is even more of a treat. I always enjoy going to see them and wish I could get out and see them more. I wanted to hang out longer but I was at the expense of my oxygen. Which is another reason I have to get off this again while sitting idle. I can handle it being up and moving around but to sit idle and need it again is a bit nerve racking. My ears and nose hurt not to mention my time out is limited. Which is SO not fair. But I do know that people aren't ever able to get out so I am not going to complain at all just explain my crazy life and what I go thru.

But I am going to get off here and start getting things ready for dinner so I am not draining all of my energy cooking one meal.

Love Y'all
~Poppet

Blessed

As yall know or most of you may know, Poison Ivey designed shirts to sell. They were to help raise me for a lot of things going on health wise, I try to keep all that off of here so I will not go into detail. Well they came in today!! I rocked mine hardcore today!! Fresh teal hair and all wore some hot pink shirts to match!! Pink lipgloss!1 OK not the point though i even curled my hair!! No braid today!1 lol OK so anyways, first pic came from Batman!! It was so sweet to see him wearing the shirt!! BTW its black with pink writing and skull/hearts/lungs/rose on it. I went over to see Poison Ivey today and come to a text from the All Father rocking the shirt!! You could see his proud face!! So sweet!! Then I got messages from one of my long time friends and her family supporting me!! I felt so blessed today. So much love and support coming in from all angles. I got to see my other family today, got a bunch of lovely text showing support. And to think my morning was bit rough!!

To explain this morning I guess I should start with yesterday. I touched up my Teal hair, dyed the roots and such with the help of Wonder Woman. When I was dyeing the front I took off my oxygen cause I was dying my tubing so was off my oxygen for about 20 minutes, which normally wouldn't bother me but my lungs got messed up a bit a few months ago. So I let it sit for a couple hours as its JUST vegan dye and i mix it with a white Wen conditioner shampoo so it doesn't damage my hair. So rinse I had to wash it over the side of the tub which is a no no but I had turned up my oxygen and was like oh whatever i'll be fine. Classic Poppet thinking that gets me in trouble. So I spent the rest of the day in my chair on my oxygen turned up a bit, and decided to go to sleep with my oxygen on 3 to get me OK for the next morning or well today. It did!! With a catch, I couldn't wake up this morning. I remember waking up to turn off my alarm and go right back to sleep and it took me abit to get up and moving. Then my smart self was gathering tubing with a cup of coffee in my hand. Spilled it EVERYWHERE, so had to fix that!! I made over to the Poison Ivey lair!! And a lovely afternoon!!

But I half to cut this short, my tattoo keeps catching!! Wonder Woman got me a sweet little tattoo on my inner rist!!

Love Yall
~Poppet

New med is awful

This new med has really been tearing me down. The side effects are awful!! All the classic signs of POTS. Drop in blood pressure, dizziness, nausea, near fainting... So needless to say its TERRIBLE. I have finally over come all this with the lovely help of Saline and diet change to be giving a med that causes it. And it says right on the package only tell your doctor if it last longer then 4 hours. So yep 4 hours of torture... I tend to take it at night now but if I have to get up the symptoms hit hard. Like POTS, as soon as you sit up you feel as though your gonna collapse!! Let alone make it to wear you need to. And by need, I mean its a necessity you get something. Lets sit up and spike my heart rate and drop my blood pressure!! Lovely right?? If you have POTS you know exactly what I am talking about. Which I went out today and didn't realize I had went so long with out eating and flared my POTS. It was salt salt salt, and saline. I laid in my chair bugging Z thru texting once I was stable enough to look at my phone with out spinning. We were almost home and I looked at Wonder Woman and was like. Dizziness, nausea, felt like I was gonna collapse sitting down. I keep salt pills on me so I took those and ate some pretzels, made it in and was like Saline Please!! She got me all connected and was good a bit after that. Clearly I am having POTS issues lately!! I almost never have issues with it because of my lovely Saline. But between new meds and being out to long... WHOOPS. The last time I was this sick with my POTS. I had gotten a tattoo and forgot to take my salt and my lungs were to strait and the combo... Was done for. I didn't go out Wonder Woman is good at getting my stable ASAP, and I am also good at knowing my body.

Then I was doing treatment for the night. Trying to put it off for a bit because my afternoon treatment was way late for my CF because my POTS was like HA! Your not moving!! So I flush you and get a fever!! Not because its late but because my MCAD wanting to rear its ugly little head. Wonder Woman says stress, I say my body just hates me. My pail white skin is blood read and puffy. Stress is a very evil thing.

In the good news area, the t-shirts we were selling came in today!! I was so excited to see them and so excited to see that everyone is loving them!! They are so well done, Poison Ivey did such a good job on them!! I am so ready to rock it!! I was so worried at first, I sorta looked at Wonder Woman and was like I do not know 20 people!! She was assured me I would be surprised at all who cares. I was!! I had so many sweet comments, and so much love from them. I also would get on and see tons of awareness in my name. Not just for CF but for POTS as well. We raised about $100!! Which is oh so wonderful. Every little bit counts, and thats the part I can not stress enough!! Every little thing counts. I am so blessed I had people care about me enough to buy a shirt!! And will rock skulls, lungs and hearts!! Or just wear my name on the shirt to help with a "cure." I truly love you guys!!

But I guess I must get off here, I hear the jingle of the kittie collar. Yes she is the all ruling.
Love Yall
~Poppet

Half an update sorry guys

I am so nautious from this new med so I am not sure how long this is going to be. I am going to try to work thru it, but I have already whined to Wonder Woman about wanting Zofran and last time I had that I was REALLY sick. I have tried a few things so its now to the point of "deal with it" sooo I am just gonna up date about my crazy day. Which started with my cat HOWLING at the top of her lungs which we found out was because she wanted her water dumped, her bowl cleaned, and refilled. To which she climbed up next to Wonder Woman and drank the fresh water... Sighs...

We had plans on going to the tattoo fest today so I got ready so we could leave, filled a tank the works. So we get there and the smoking area outside is right by the door. Which drives me mad!! Not everyone who is "weird" smokes!! I have 7 tattoos, pierced, and teal hair. I dont smoke!! I didn't even smoke before I truly knew what was wrong with me. So we went in, walked around a little bit, and we decided to leave because there was nothing fancy there, and no where to sit down, We didn't like the shirts, we didn't see anything worth the high prices, and I couldn't find the booth for a local chronically ill child I support sooo we left, and into the smoke. And of course PETA is right by the door. This Vegan does NOT support PETA. Hate me all you want, I can not stand PETA. Anyways soooo we decided to go the mall. One close to the convention center we almost never go to. Wonder Woman needed work clothes and I said well why not lets do it while we our out here. By this time I had been out about an hour or so and we walk in the mall find Michael Kors and when we walked out there was this glass display case and what was in it?? Build a Bear Star Wars!! OH MY GOSH. I maybe a Star Trek fan but I also love love love me some Star Wars!! So we gad a mission after I stopped by to say Hi to the Bare girls find Build a Bear on the other end of the mall. OK I can do this!! And we did!! I got the blueish black one that has star wars all over in Han Solo's outfit name it "Hon" and Wonder Woman got the Wookie Chewey of course lol. So original right?? Well we walked back to the center where we came in, and looked at Wonder Woman and asked her to find the disney store for me, I know they have an Alice in Wonderland make up line, so I wasted my lungs to walk there and they didn't have anything Alice!!! I was so upset!! It was only 4 stores down but when you have lungs like mine thats a long walk and after I had walked all that way and at the tattoo convention it was a bit to much and to find out there is no Alice?? And I NEED that makeup ok anyways. So we leave and I find out my entire shoulder is red from my oxygen tank!!

But I am going to hop off here I can't do this whole nausia thing anymore :-(

Love Yall
~Poppet

Sif came today!!

I haven't been feeling so great lately, and i've started a new med so it's been an interesting week. I am not able to come off my oxygen anymore but I have gotten use to that. My ears haven't but I have. I have been trying to read my lovely new book but I have to stop and keep doing things like answering my phone or this new med drains me so I haven't gotten far and it breaks my heart!! I want that ship!! and the lady the book is about is such a remarkable woman but anyways...

Lady Sif came by today!! She got me out and made such a lovely change to my week. It brightens my day when friends come around it really makes all the difference when it's been a stressful week. We got starbucks!! We also made a Target trip which is a great for my lungs to get a bit of exercise and it helps me not stay idle though I am sure that whiped me out but I am so grateful I can get out and do things still. Even just an hour out of the house is enough to change my mood. And some lovely lady let me sit down for a bit while Sif was trying on clothes. Such a nice change to meet a nice stranger. I also popped on FB for a bit which was a reminder on why I never get on there. Its just no good, there to much drama, to much negativity and its just so much more peaceful with out it. Just gonna stick to my games. Though its much easier to be off the computer I can't live with out my farm!! Well I can but I love farming and I have been playing it for so long.

I also went out yesterday so that could also be the cause for me to be so tired!! I just layed in my chair and just watched Star Wars. I asked for the Hon Solo Star Wars and Wonder Woman put it in :-D!! Even waited til after treatment so I could watch thru.

But back to the new Med?? I got this new med to help my boor bones as I take a lot of steroids, its an injection and it doesn't hurt bad at all I am just very unfamiliar with how to give myself shots the proper way and prevent it from going into my tissue instead of where its suppose to go. We think that I did that yesterday as I am so "whatever" about this stuff I just sorta stuck the needle in and injected it. Today I had a bit more help. I had Wonder Woman help me which we had a bit of a disagreement where the needle was going to go. Sounds terrible but it wasn't. So as most know I have two skulls on my thigh and it covers most of the side of it. (not known for small tatttoos) soooo I wanted to stab it in the eye. Demented I know but theres no shame here!! But as I had a welt yesterday she wanted to monitor it and a black eye was not the place though looking for red in a black and grey tattoo probably wasn't the most proper place to pic but I did none the less.

But I guess I best get off here, I am exhausted and I need to humidify my oxygen.

Love Yall
~Poppet

One of those days

Today was just all around rough. There's no way around it was just plain out rough. It wasn't a bad day but I struggled all day long with my breathing. From the moment I got up until now.

When I got up this morning as soon as I set up I knew my lungs were a bit rough, but I didn't think it would be terrible sometimes the down side of benadryl is I sleep to sound and tend to wrap around Rubes which makes me to flat and after a bit of treatment I am good. So I walked down the hall, and I was coughing pretty bad, Wonder Woman heard me and she of course wrangled me up and said PT. I told her I hadn't grabbed my inhaler yet but my right lung hurt and we needed to focus there so I went grabbed my inhaler and my phone to see such a lovely message, and listened to a very sweet song which made my morning much better. It was texted to me and it was a song from the 90s that  I grew up loving, I think I played it twice before I walked down the hall for PT and treatment. I am not even sure I replied right back I was distracted by the song. Well anyways, we tried PT which alls it did was dislodge it and make my breathing worse. So not only was Wonder Woman rushed this AM, she took time to pound on my back between treatments. I also sat on my vest with it on high. That lung still hurts to. That was just the first hour of my day!! I texted Batman going I need my coffee but getting up well yeah not happening, I got some coffee on the way to get IV supplies since I have to walk thru the kitchen but getting up to just get my coffee was to much stress. Wonder Woman usually helps me during the summer, but no one was home for the most part today. But I made it!!

I have a bad habit of taking off my oxygen during the day, which never makes Wonder Woman happy... my airways tend to get sore, and really dry, my ears get sore from the constant pressure and a few minutes of a break never hurt anyone right?? WRONG. Well today anyways and take it off put back on. Right back on.

Then Wonder Woman comes home and looks at me and tells me I look spent, its like well put up with these lungs and heart and you'd feel the same way. It's very taxing at times to breathe with all this going on. Then I also have to make my food, get my coffee, get IV supplies with out some one to help here and there its added stress. She gets it so it wasn't a terrible thing. And she helps where she can when she got home. Thought she was a bit concerned when I washed my face!! She had come to tell me about this show she was watching and she's like uhhh hurry up and wash your face please. I assured I have this to a science and got my oyxgen on pretty fast and then was like uhhh I forgot my phone so I can sit here and catch my breath!! But over all it wasn't a terrible day just struggled a bit with these lungs. Some days is harder then others but what matters is you still fight like you do on your good days. It also makes me thankful for days I can get out even when i have to stop and catch my breath.

But I guess I need to get off of here before the Rubes finds I am on my lap top and not making time for her!!

Love Yall
~Poppet

rammmbbllleee

You know, it never gets easier to tell people how I am doing. I hate breaking peoples hearts when it comes to the reality of my health. But I will never let them think my spirit is broke. I think thats what people need to know. My spirit is not determined by my health. I can't let this crazy disease take over my soul. I always try to find things I love to do. Truly love to do. Like cook!! I love to cook. It's my passion. I am always in the kitchen doing something. Yeah my food allergies sorta force that to. But I love to be in the ktichen and do what i love. Truly do what I love to do. Same with makeup and hair. Which is why I try to stay put together.

I always try to not let my disease take over to much because there is such a difference between the disease and me. Though you come to know the girl and the disease but thats not always how it is. Most people know the disease and the girl and forget that there is a soul and a personality behind everything you physically see. It tends to get overwhelming which is why I am not always in tune to letting people get to know me. I have this block on me thats like eerrrr no no no. But at the same time I let a select few in and will always stop to someone who listens. I balance a fine line being me and letting this silly disease leak thru. Because there are times where it does stop me from doing a lot of things which is crap.

Sorta just random ramblings of the day?? I just wish people who get to know me some days, but at the exact same time I am so so so thankful for the few that has gotten to know ME, the girl behind the disease.

Short little rambling for the night
Love Yall
~Poppet

Life Is Beautiful

I do not get on FB much anymore, it's a source of my anxiety and access to toxic people really easily. So I stopped going on my news feed. I popped on there today to Farm (hush) and was scrolling thru feeds, and I realized how many people truly care. I remember telling Wonder Woman I barely know anyone, and she just told me I would be surprised how many people actually care and well I am to say the least. I saw the amount of hits I got, I saw the amount of people who stood behind me, who cared about my story. The sad reality that I face. 

But here's the thing, I have learned how truly beautiful life is. I could see this disease as a death sentence or I can see what it can teach me. It taught me that...

Makeup can wait, that purring kitten asking to be loved is your FIRST priority. She needs you, your makeup doesn't. Pet her, pick her up, and love her. 

Gaming can wait. That text "can we hang out" is way more important then sitting in front of a TV. That connection with the person next to you is more important then anything. 

Put your phone down!! I pull what I call the "All Father" keep the phone in your car. You can't talk to a complete stranger at Starbucks if your to busy texting someone back. Now yes a lot of my communication is thru text, especially to those very close to me. But you never know who is standing next you that can need your attention. 

Follow your heart. Do you have a passion?? Go find it, go do it. Life is short, you might as well spend it doing what you love. I love to sew, and cook. So I try to make sure I do it on the days I feel well enough to do it. I use to drum and no longer able to keep up with it. 

Do. Not. Judge. You never know what is behind the persons look and their story. Though mine is written all over my skin with ink. No one knows this they just assume I am a horrid person. Except my artist the first time he met he made sure my work schedule was clear. I automatically loved him!! 

If you have a once in a life time chance to do something... DO IT. That oppurtunity may never come around again. Why risk that?? 

Let people know how you feel. Good or Bad. And if its bad say it anyways you may never know who will truly understand. I have found this out for myself so many times. It always breaks my heart to tell people I am not doing so great, and they always fill with encouraging words. They always assure me that they loves me and they are here. 

Never wait for someone else to do it. No matter what is it. Because if not you who else?? What if that "who else" is no one and nothing ever gets done?? Take the initiative to stand up for some, whether its on the net or in person. You never know you could affect someones day. 

Always know life is beautiful, even in the hardest parts, even when your on your knees in tears, theres never a Rainbow with out rain. Keep holding on. You can always private message me, I will listen, I can't promise answers but I promise I will listen. You have to go thru the storm to see the rainbow. 

 

Love Y'all

~Poppet