Small update

I haven't updated this in awhile, more so because nothing really has been going on. I have been trying to knock out a bunch of cross stitch so I can just enjoy the week with Wonder Woman. I have one the last thing to order for halloween but I think all is set for that day. Yellow blush from NYX in matte and shimmer it'll complete the look. I got the hardest cross stitch done tho, it was one stitch here and there for hours on end. I can't post them yet as the All Father might read this and he does have access to social media but I am so proud of how that came out. Id love to make a living off doing cross stitch cause I do enjoy it. The All Father loves hand made gifts too.

Other then that I have been gaming with my friend a bit, I got a text early this week that the game we had been talking about was super on sale and that it was in my steam inbox. Oh my gosh. This game is HARD Three hours and three classes later I got thru the boss, but we have been co-oping the game to help me because its a tough game to get thru. Like one hit bosses and the only strategy that exist is dodging. Thats it.

As for my health, its been OKish. I had a small lung infection recently after a week of rain and then we got hit by a hurricane. It sorta skirted around us but it still had an effect on my lungs. I could barely breathe and eat at the same time but we all expected that to happen. My lung typically do not handle weather like that at all. This week its a full moon which has an effect on my POTS so its good I've been gaming this week, I did yoga yesterday and struggled thru it. But other wise I've been doing ok.Yes its ok is you struggle thru things you typically don't. Its ok if some days its hard to get thru simple task what matters is that you do it. It doesn't matter how long it takes it, the end result is what matters. The feeling of accomplishment is wonderful. I would love a good work out but even the smalls ones matter.

But I must get off here and finish breathing treatment and chest pt. Gotta keep theses lungs clear and the mucus thin.

Love Yall
~Poppet

update

Its been awhile since I have been on here. I had PFTs which I do believe showed my lungs are stable but proves I physically can not take a deep breath in, and I also had CF clinic. So I have been busy and super tired. Now the heat of the summer has hit its peak and needless to say I can not breathe. I've had to momentarly had to pause part of my life. I don't mean that to be sarcastic but the only things I can do is cross stitch, read, games, and the such and that in between laying down to rest. But someone asked an incredibly good question about the heat.Why does it affect me and why don't meds work to help it. Well they do but if it only was that simple.

So I do meds every day, a few times a day, all year around. So yes when we go somewhere all that stuff has to come with me.  IVs, neb, stuff for chest pt, medications, and anything else I could possibly need to get thru a day or night somewhere. But the heat mixed with humidity makes the air really thick. You hear people with out lung disease complain about this. Now imagine having lung disease on top of all that. Then I get dehydrated extremely easily. Which that causes my secretions to become almost like cement. And though I stay in a cool area of the house, I do not exercise, and do what ever I can to stay cool the outside elements still effect me. I also have 2 diseases that depletes the salt in my body so Im constantly taking salt in. The simple answer is yes dehydration. Medication does help but only so much.

Outside of being busy and trying to keep up with everything nothing much has really been going on. I am waiting to be approved for genetic testing so we can see if I can extend my life. No no its not a miracle cure but added years is something we all strive for. CF is a terrible harsh disease and though we can not stop the process of destruction essentially we can slow it down. Which what we all want. The funny thing about life is no matter what we do to alter things, life is still going to happen the way it is supposed to. We can't control or predict things. We can simply embrace and accept life for what it is. I personally love life and the amazing things it has brought me. But I'm going to hop off of here and take advantage of the little time I have before the heat takes over.

Love yall
~Poppet

Dear CF

So often you hear all the sad and heart breaking things that come with you. You here how you taking children way to soon and parents raise kids knowing all to well the fate you have laid upon us. Your usually the sadness in peoples eyes, and the apologies you here soon after. But what they don't see is how much you have taught us. 

You have taught me and those around me to be present in a moment. Put the phone down and truly pay attention to those around you. Listen to them like truly listen to them. Hear what they have to say, technology can wait, social media does not need to updated, some texts can wait and phone calls can be returned. 

How to love unconditionally setting no standards of what people should live up to. You know sometimes "your best" is simply breathing at times and we all have bad days, every last one of us. We never know what someone else is going thru. So often we expect people to drop what they are doing and demand us to be fully there when our souls need rest and thats truly ok.

It has taught to truly accept who I am and who people around me are. There is so many things about you I can not change. The coughing, the pills, the meds, and it truly has taught me to look inside and accept my life for what it is. We can not change certain aspect of our lives. There are things about us that simply just the way we are and we need to embrace it. Be who you are meant to be and not what society wants you to be. 

You have taught me to be thankful for every single and for the people around who choose to love me. I have been so blessed to have so an amazing interesting life. You can be difficult, challenging and down right heart breaking but thank you for teaching me who I really am.

Love

~Poppet

Memorial Day

Its been a busy week for the most part, I went to a cook out on Monday and though I never eat at them because of my food allergies, I did enjoy myself. They all offered to go inside for me and my lungs but it was by a river or really a channel of sorts, I opted for the shade of a tree to breath in the fresh air and any salt in that water would help loosen my lungs. I got to spend it with family and though they are always nice and always offer safe foods the All Father goes by the motto "you didn't bring you don't eat it." Theres a lot of risk in eating foods you do not prepare for yourself even though they are versed in food allergies cause of their daughter.

We were sitting their talking and I used to baby sit their daughter when we were both much younger, they had family get togethers and I use to baby sit her. Oh I still lover her she's such an amazing person and very talented artist. I dont remember how old she was but she was young young and I use to love well still love the Rocky Horror Picture show and that's what really got me into makeup and when I put it in she would sit still the entire movie and just watch it. Yes yes I know not a very good influence but we both still love it to this day.

While we were at the house, they got out this game called corn hole, and I'm not sure fully of the rules and point system but after watching them play for a bit me and the All Father decided lets play around. I had no idea it was a physically demanding game but we did really good for the first time playing we were only a couple points behind and I got to catch up with one of the neices (his not min). I just love spending time there. I was exhausted and I got bit my mosquitos but it was so worth it. I got a text that night from the All Father making sure I didn't go into some weird reaction from bites even though I had huge welts from them. I was fine, and just now feel rested after a long week. But it was so worth it. I truly enjoy spending time with that part of my family.

I have another busy day in front of me, I need to wash makeup brushes and my hair, get some yoga in, and get things sorted for this weekend.

I love y'all
~Poppet 

Bit Long

Sorry I have been MIA on here, life has been busy but quiet all at the same time. Wonder Woman works a LOT and I mean a lot so I tend to run errand and stuff for her. Which actually meant a trip to Ulta... OK for those of you who don't know what Ulta is its a makeup store. I spend way to much money there. I actually bought me a Game of Thrones pallet. Oh oh and not long before that I had ordered the entire Avengers collection. OH MY GOSH. My heart. My heart is broken from that movie.

We finally got to see it (I promise no spoilers Mr. A) the weekend before someone called out and she has to go in. So we didn't get to see it and she was so upset, I dont even remember what occupied me that week. I was giving a bit of for warning to cope with the movie but I assure coping is not even close. I sobbed my heart out. I also found out I had contact allergic reaction to milk that day. I highly recommend you go see this anyone that loves Marvel. On top of it being mothers day it was nurses week. So I got her a purple rose badge holder, some earrings from my Pixie Momma from across the pond, and CF mom cup. Its CF awareness week.

Oh speaking of CF, did y'all know it affects your digestive system?? Spider Maker is use to this by now, sometimes I tend to make me large meals, or high fat meals. If I dont take enough enzymes or forget to take them by body can not actually digest the food properly if at all. Yeah, he's the one that gets those text "to much fat" and he knows. Its incredibly painful. Like not move lay in bed painful. I have learned many many ways around this just out of share stubbornness. Air fryer and I sometimes add water to my pan fry just so I'm not eating so much fat. This week I messed up somewhere and one of those bouts.

I also finished his dragon I was working on and got it out to him for birthday. We had a new release on the game we play together so I got a random call from him the other day. We play guild wars 2 and a few other games together, though that's are main one and we are raising a dragon on there. We as in the entire community that has chosen to do this. What I love about this community is that they all come together and help each other out. They are so kind except in PVP. I have this one kid that I helped once and he knows about the whole CF thing and he gets on there every now and then. He tells me all the CF stuff he has seen on TV (movies/news/tv) and he always ask permission to ask me questions. Its the most amazing thing I ever seen someone do. This kid (he's a teen I think) he was one of the few that asked what did you decide to do when it comes to that point. Most people just assume there's no other choice, but he just knew and I was kinda impressed with that.

I also started working on a gift for the All Father so that has been keeping my busy to, but as for my health its been pretty stable actually. Nothing to alarming came up outside the hives I got from using a tissue that touched milk. And I got to pop by to see the All Father recently to.

But I must get off of here and get this stuff rinsed out my hair.
Love Y'all
~Poppet

What a day

Today I had gotten up early was getting ready for the funeral. I had turned Queen on youtube and as always it swaps me over to Aerosmith (I can only half complain about this). And one of my all time favorite songs came on and I was I think curling my hair, I had heard the lyrics and just stopped. Now dream on has a sad new meaning to it cause for once I felt the lyrics, live your life because tomorrow you might not be here. Im usually not much of a sap but oh how my heart is broken. I very vividly remember this person so well.

So the All Father comes to grab me up to take me, while I was in my room grabbing something, I see Grandma coming down the hall with a packet that had Grandpas funeral arrangements on it, and that's when I realized where we were going. I truly thought it was a Veterans funeral home and such which I was only half wrong about. Anyways so I asked the All Father while we were there could we see my Grandpa I had seen him in awhile and he needs a visit while we are there. So of course I stopped to say.

Side not for girls, don't where heals to a graveyard just don't. Learn from me. Bumps and heals no no no.

This always gets us talking about death. I have always believed we should embrace it and dance with it. Morbid but hear me out. I have spent my entire adult life battling my lungs and food allergies. I group around the ICU because thats where Wonder Woman worked and oh how she loves it. So I always had this idea that anything can happen. I made a choice in life to embrace it, no matter what, we never know what is going to happen in life, we don't where were going to be or where we are going to end up. Its simply just a part of life that we should not fear. I will fight for every breath to continue to live don't get me wrong though.

So today I am going to drink my Starbucks, be thankful for this wonderful insane life, and maybe cry a bit cause God do I miss my grandpa. I was not expecting to end up there but I am so glad I did. He's my guardian angel after all, which we all know I need one battling this body.

Life is a beautiful amazing thing, do what you love.

Love yall
~Poppet

Life

I guess I should update this. Ive been a bit short of breath all day but I got to do the things I wanted so I want complain. Though I did eat a pint of ice cream for dinner cause well I deserved it. It was delicious with a nice hot cup of coffee. I also got Starbucks today, But anyways.

Friday was I was reading my book for some reason I left my phone screen on which I never do and I got a text from the All Father, which of course I closed my book and grabbed my phone. I got a text that someone I know had died. Once I placed face to name my heart sunk, I remember him fondly. I have been to band practices, New Years parties the works with them. I actually had him sign a drum head with my dad one year a LONG LONG time ago so when they got famous I had their first signature. Oh gosh I had to be twenty. That was also the night me and the all father got banned from playing with fire works.

Life is the shortest thing we have. I have said many times in this blog I have always been raised to believe quality over quantity of life. We must do what we love while we are on this earth. What moves your soul when you close your eyes and dream. What makes life worth living. Yes I get it, life is tough and it is hard. But its also so beautiful and amazing. We need to present in a world where its more important to be connected to whatever social media platform there is. But if we just put our phones down and talk to someone around us we'd find out how truly amazing this world is.

There are many times I just shove my phone in my purse and zip so I can sit and a coffee table and each Fritos with all father, to have dinner with my family, to catch up one whatever is going on in life. Some of my favorite memories are spent in at that coffee table. Or in the sunroom that my Grandpa built. Be present, be open, and disconnect from everything and just be present. Most of all follow your heart and dont let the world decide what and who you should be.

Love y'all
~Poppet