Summer

Its summer!! And you know what that means?? Bye Bye lung function. Though that does sound like I am "whatever" about it, I really am not. We are just use to it, the decline comes in the summer which is why we don't usually do PFTs in the summer as it makes me breathing a LOT worse. But I am so thankful for my parents that makes my life so much easier and give me that quality of life that I truly feel some days I have lost.

This past week I have all but lost my voice and I was fighting to keep an infection out of my lungs. I have started sleeping with my oils and salt lamp. We are currently doing the Theives oil to help fight whatever infection my lungs are trying not to get. On top of that I have breathe on my chest and doing several treatments a day. Yes thats right midday treatments. Flutters, vest, and manual PT as needed. I am so blessed to have my safe house away from home so when I need to get out I can just relax at another house. Or the All Father picks me up and we go for a little drive in an AC truck and we visit little places.

Life gets so complicated in the summer, its a constant fight. Its to hot in the den, someone messes with AC in the sunroom at night so when I get up I have to turn it down, which isn't an issue really, just turn it down, make coffee, and then treatment. Its sitting in front of a glass door for some sun while the AC blows on me. I don't open the door because then Rubes thinks she's brave and we can't have her outside. She actually sitting here staring me down.

Set backs now a days scare me a bit as I can't have my lung function drop to far down, because then we will have the fight of getting on transplant list a lot sooner then the predicted date. We don't want that, we want to keep these lungs as long as possible. Yes it is inconvenient toting around a tank on top of all the things I need (like meds). But this is my life, this is the life that I have fought so hard for and I am not going to stop now. We also have some major appointments coming to see what if anything we can do for my heart. We all pray, including Dr A, that we can still treat my heart as naturally as possible. This is what I will fight for as well.

My summer is spent binge watching shows, while doing treatment, or some non stressful form of exercise. Yes thats right, even with my lungs being quite vocal lately (no really you can hear my breaths some times) I am still required to do what I have to so I can breathe a bit easier.

Thought I think Rubes wants some dinner in the most passive quiet way possible, so I must keep the poor things bowl more then half full or she does the classic kitty "please fill my bowl."

Love Y'all
~Poppet

30

Not long after I turned 29 I found out we were probably going to start the transplant journey, my lung function is low, my peak flows are low, and sometimes my oxygen is high. With a lot of fighting, a lot of work, and one good luck tattoo later come January I found out we could push it off some. The amount of work and time that has gone into it is well worth it. I was able to spend this last year surrounded by people I love. I got to spend it doing the things I love. I also spent with a dedicated couple hours a few times day (my days are basically taking care of my lungs) to exercises, chest PT and breathing treatments.

Life is not clear cut, and no one knows where its going to take them. I have spent my entire 20s fighting for my life. Now I am going to spend my 30s fighting off lung transplant, and fighting for lung transplant. Funny how that works right?? My doctor predicted maybe MAYBE 3 years left with my lungs. Is quite a sobering reality. I really had to stop and center myself. What do I want out of life?? Who is in my life?? Are they going to help better myself?? Do people drain me?? What exactly do I want out of this life?? These are all thoughts you have hearing this. No one wants to hear any of this especially someone my age. But the thing is, we made it to 30, we have been working on my sleeve, and I have the best spiritual guides a girl could ask for.

Thats what the end of my 20s became, lets knock some things off my bucket list, to come to conclusion I really didn't have one. Being raised by Wonder Woman, I never had the belief that our job in life is to grow old and have family. It was to love, and do what your heart desires, so you have the quality of life while you can. That is exactly what we do. So I asked Wonder Woman for a sleeve (tattoo) and to help me meet Steven Tyler and Johnny Depp. And of course Christian Kane. So she did the only thing within her power. Help me get my sleeve. Help me embrace my Steven Tyler fashion, and encourage me to become the makeup artist I want to be when I am able.

So yes, we had worse case scenario going into this year. But we made it the best that we could. We rocked every thing we could, and we made the most of every single moment that we could. Why?? Because that is what you do in life. You don't stop and say "well there is always tomorrow." No. you ask "what can we do today to make this a reality," And thats what we do, and what I encourage you to do.

And since I have salty air lungs (thinned secretions) I am gonna do what any CFer should do. Take advantage of it and clear these lungs so I have more tomorrows.

Love Y'all
~Poppet

Tis the season of heat!! Also tis the season for me to "quarantined" because my poor body can't handle the heat. So me and Wonder Woman were trying to get things sorted in my room, and we are now on plan C, and happy to get things sorted in my room. Two people with OCD, and with strong personalities always make working together interesting. So no major computer in my room for the summer, but that truly is OK. I have books, coloring books, and the works to keep me entertained!!

When you are basically trapped indoors because your body can not handle the intense heat, you have to become creative with things to keep occupied and entertained. Yes a lot of my time is spent caring for my lungs, but those moments where you sit and our still you need something to do. I refuse to let myself be bored because then my mind wonders. I can easily get wrapped up on a bad day about how unfair my life is. I can't just go out and enjoy the beach like an average person or an amusement park. I am stuck inside with my IVs and oxygen. Yes it does seem unfair. Some days I constantly remind myself this is exactly where I need to be in life, Fun?? Not always. Fair?? Not even close. But this is my life and I have to make the best of it. Somedays its easy, somedays I am on so much Benadryl I just do not care, and other days its tough.

I am constantly reminded its going to get much worse from here. Which I get it, but if I can't cope now how will I cope then?? So I make the best of it. The last few days my chest has been a bit to tight for comfort so my free time has been spent doing relief meds, and draining the lungs as best as I can. I mediate which allows me to focus on my breathing and center myself, and I do several forms of Chest PT. In those moments of silence, its a must for me to stay busy. What do I do??

Well for one I cook. I have to eat, and I have to cook every meal so at times I dedicate a longer frame of time to focus on my one true passion in life. I love to cook and invent new things. I love to do my makeup and just in front of the mirror and design new things that can be pretty out there but still me. I love coloring and have a stack of books I spend my time with. I organize drawers when my body allows it and other times I just watch a movie and be still.

I have told the All Father several times. I do not know where my road is going to lead but I do know at this very moment of time I am where I need to be. I am on a spiritual journey that I am so blessed for him and Frigga to guide me thru, and I am in a position where I can dedicate my time to this. He has encouraged me to start an actual website and put all this out in the public. Maybe my Jon is to guide someone thru this when they our just as lost as I sometimes feel. You know how right he is??

This is my advice to you, on a day where am I just frustrated with my lungs because its not even summer yet and my lungs are already getting beat down, and I couldn't sit thru what I'd call an easy tattoo. More of a location then pain thing. It cleared these lungs a bit. However, my point. Do what you love!! So it may take you 3 days to finish a coloring page?? Thats OK. Color, Do you like video games?? Play them!! Play until your wrist hurt, I am guilty of it. If you can sit in the sun, enjoy the day, and enjoy whatever it is your heart and soul loves to do.

Me?? Well today Wonder Woman tried to get a computer in my room, it doesn't work, but my room is now organized and I have plenty of room on my desk to do eleaborate makeup. I also have gluten free pasta and fresh veggies to make a nice dinner.

If you ever need someone to just listen and understand the share frustration of life I am here, just private message and I will get back to you.

Love Yall
~Poppet