Life

The Bohemian Rhapsody came out this past week. Wonder Woman has it heard about for over a year now and we missed it in theaters. She was working nights, my lungs are questionable around large groups. It got to the point I would just send a text and she knew what I was talking about. Yes I am a Queen fan but It was such a good movie. One part of the movie he said "I don't have much time but what I have left I want to spend it doing what I love." No really even if you're not a Queen fan watch it. It is so beautifully and respectfully done.

I have always said, people who live with a terminal illness think differently then the mass population. We have this though process that knows life is short, its beautiful, and its so worth it. Yes yes I know some are just mean grumps, but I know many who just truly love life and want to spend it sharing love. You always here people saying "I wish I could do this" "if I had the chance I would have done this differently." The average person holds on to this idea that we are going to have these long lives and there's always tomorrow. People forget to make the choice to live this day, and be present in this moment.

What if we all thought this way?? What if we all realized we are not going to live for ever and we are just present in a moment we can't get back. When me and Wonder Woman talk, we have memories that don't always have pictures. "Do you remember that concert we went to??" Which one is always the answer cause theres a lot. She has alway taught me to follow my dreams and my heart and to never settle. Follow my true desire in life. That is why I am a Chef. People in my life didn't want me to have a "man's job." But oh how I love to cook. Sometimes we don't know what we want to be, or we are scared to push boundaries and be what we want to be.

Don't waste your life thinking you have forever to live, don't spend your time shrugging it off and saying "there's always tomorrow." You have the here and the now. Do what you love, chase what your soul truly desires. And live the best life you can.

Love Y'all
~Poppet

Christmas Update

Now that rush of holidays are over, and I half slept through the new year. I figured now that I am awake I'd up day on the craziness of my life. Of course nothing ever goes as planned, we make things work, and with all the fireworks and gunshots which means a scaredy cat I slept most of yesterday.

So I did get to be home for the holidays, though it wasn't that simple. I had seen Superman that morning and we had to sort my home saline to up it to 4 liters for three days which means I was getting up at 6 am to be out of the house by noon. Which as soon as Wonder Woman opened the door I was at her side making her open her present. Why would I let her take her jacket off?? The All Father got the excitement before he got into the house and we opened our presents a day early because of it. I had made him this gorgeous cross stitch that was based off American traditional tattoos. He has left the tattoos to me and of course he needed a second one.

I got to go to Christmas dinner and see some of my family I haven't seen in years. Some since I was like 17/18. One of them lives out of state and we sorta surprised her that day. I call her Sissie. I have been trying to up that way every time she's in town but it always falls short and I finally got to see her. With rest of the clan too. They are such a wonderful part of my life. One of the girls I would baby sit while our parents were down the street at a house party. Then I got to me some of the younger kids I hadn't been able to. Thankful Spider Maker got me into anime and was able to connect with her.

I also got to see my favorite uncle. I came home just in time for me to talking to him and he brought me over some Stephen King books to read. Yes yes I know he's a horror author but I mean I do read Robin Cook who is a medical doctor that rights on hot topics of the times. Fabulous author. And IT was my first Tim Curry movie so why not read the book?? I also gave him the rest of Rubes treats that shes allergic to or won't eat.

So though I have been busy I have been really enjoying my time. And I love surrounding myself with people I love. As for the New Year?? I am not sure what lies ahead me as life is so uncertain. But I know I am going to work on 4 trials recipe books to get a feeler out on what people like. I know whose getting them already. Once I sort Rubes out I will be getting a few prints even if I do it buy hand. Which that sounds like a wonderful idea.

But I am off here for now. Gonna read the newest Robin Cook book so I can start on some Stephen King.

Love Y'all
~Poppet 

Born this way

My lungs are in a bit of a bad situation. I have a cold which means it went strait to my lungs and I've been on a lot of meds. I always worried about getting admitted because my lungs are incredibly fragile and I'm coming up on the age that my lungs life span is. The hospitals have a lot of icky bugs in them and it's Christmas. I don't want to mess up Christmas.

I was just talking to the All Father today about my health and whether one triggered the other or something like that and our crazy reality is I was just simply born with 3 incredibly rare disease by some random chance. Blessing?? Curse?? I guess thats all on who you ask?? Controversial as it may be. My diseases and my journey has made me a better person. Yes. You got that. A better person. Tho I had these disease all my life I was even rarer in the fact I didn't know until adult hood plus the YEARS it took diagnose. I was your stereotypical wild child. But I have had symptoms all my life I just wrote them off.

But my disease has taught me so much about life. And sometimes you need people to remind you while your crying out of frustration. No you dont understand I gotta go see Santie Clause and he doesn't come to the hospital. Yes he is real. This is my life and yes at times its absolutely on a tight wire but this is my life. Yes I said that twice because its so important. And yes that is what people point out to me. And so often I have chose to stand and face it. I have chose to embrace it and I have chose to fight for it. I choose every day to get up, take my meds, drop everything I am doing to take more meds. When people tell me I couldn't do it I just smile and say its not the hardest thing ive gone thru.

I can tell you horror stories about all the things my diseases have done to me. But I can also oh my gosh this cat is obsessed with my desk. Looks like we need to have another talk. Anyways while my cat is trying to figure out how she got into that situation. She is one of the many blessings of this disease. The point is, because of my disease I have had many amazing opportunities. I see life in such a simple way. Life is such an amazing beautiful thing. We make it so much harder then it has to be. Yes people go thru hell, I go thru it. But life is not about finding this bigger purpose, your life is the bigger purpose. Your journey is the purpose. Its not made to be easy its made to be lived. Its made to be experienced. And yes the pain and the heart ache only pushes you to be a better person. That's if its what we choose. Like background says, yes its by Steven Tyler. "Every life has a measure of sorrow sometimes thats what awakens us."

At the end of the day I was simply just born this way. Nothing is going to change that. So why not embrace it and dance on.

Love y'all
~poppet

Just be

Recently I went to the doctor and got some mixed news about my body. This is a very "me" thing as always. My left and only left arm has complete osteoporosis in it. I have "10" in the forms of testing. But only in that arm. Now that arm has been giving me issues for awhile. I still have full permission to do yoga and so on. But I need to be careful. Its just one more thing to add to the list at this point.

One thing that keeps coming up as well is "I couldn't do it, your so strong" the reality is I am just an average girl giving a very unordinary life. I was put into this world with a terminal illness, that effects every part of my body. This is the only life I know. Its only weird when people point it out and tell me how different I am but they are comparing it to what they have defined as normal. Sometimes normalcy is different. Why I do all of this. Yoga, treatments, meds, homeopathic, and strict diet is because this is what I have to do to survive and you know what?? This life isn that bad at all. Yes I have my moments of tears, and weakness but I am so incredibly blessed.

There is so much that happens in my life that I do not have control of, my diet is really out of my control, and my health. But there are things I do have control of. I can control how I react, and what I do to better myself. There are times when I am doing yoga that I have to stop, catch my breath and keep pushing thru. There are times I am sitting on the floor cooking. But these are choices I make to better my life. So often you here "don't tell me its diet" well I got news for you sometimes it is. It's not ideal that I had to cut out meat, but my heart approves. It doesn't have to work as hard. This a very me thing because I dont have circulating blood volume.

Yoga keeps my blood from pulling, it comes my body physically strong, it keep air in my lungs, and it keeps my soul happy. So often we forget that our soul is a part of our physical journey. Our soul needs cared for. Yes there are a lot of things I have giving up and yes it does suck but what else do you love?? What moves your soul deep inside of you. Chase that. Don't stop your life because you feel you have been dealt a bad hand. Exchange what you need to and come back strong to win that round.

One of my favorite places to sit when my soul feels meh, is my sunroom. My Grandpa built it. The first thing I told Frigga about the sunroom was how my Grandpa would decorate it. How everything was white. I even went in his garage recently and took be back to being 5 and watching him build things. Helping him grill. He's been gone for a long time but those small moments center me and remind me that I can still do this. Why?? He had one lung and still worked endlessly in his garage because that's what he loved.

Fine what you love, do what you love.
Love Yall
~Poppet

Power or lack there of

So we lost our power for abut 15 hours. We finally got ours back as I was preparing to go to work with Wonder Woman. Her boss was very kind and said if you need come in earlier do so. Thanks Ms V!! I had being texting and calling Wonder Woman since the storm hit the night before and the power started flickering. Which meant my oxygen started screeching. Me and Rubes the cat sleep with a TV, salt lamp, and 2 fans. When I was teenager Wonder Woman worked nice and we had a 1/2 acre and soccer field behind that and Dog Dog was huge but a gentle soul. So TV was a comfort and still is.

So no power, means no meds, no oxygen (tanks I were conserving so used as needed), living off cheerios, and when it got to warm inside I sat on my front porch. And since I was soully depending on my phone to call and check on the power, I really had nothing to do all day. Well thats only half true. Before Wonder Woman even went to bed I dug out a book I was meaning to read for awhile that got pushed aside to video games. A biography on Steven Tyler. The one and only front man of Aerosmith. LOVE him. He has worked endlessly to get the Music Modernization Act pushed thru to make it a law with several musicians. And reading his book so far he just wanted to change the world and he did!! If you listen to any of his music, listen to Make My Own Sunshine by Steven Tyler not Aerosmith. Anyways.

No electricity meant we had to go old school CF. Medication for CF didn't come out until 1996. So there were no treatments it was just manual Chest PT. I took some more antibiotics just to keep anything at bay infection wise. Took some Benadryl and tried to keep my lungs active as possible, By early afternoon I ventured out side and sat in the shade with Grandma. Burnt my feet in the sun at one point but I mean I am a Vampire after all. She grew up next door to my Grandpa so I heard all the differences between the 2 families. The last time we were out of power my Grandpa was still alive the last time we went this long with out power and I remember being a teenager and watching the tree across the street up root and come back down with him. If you know me its the one by the edge of street across the drive way.

Needless to say this was a very exhausting day for me. Stroms really mess with my lungs as it is and the night before I had to take a lot of Benadryl to ease the pain and knock me out. To no lung meds, no vest, and a bit of hit. I was asleep by 830 last night and slept well thru the night with the snuggle bug. I saw Wonder Woman come in to check on me and her let Rubes into the sunroom. Oh my gosh I think Mr A was the first to see the shy little kitten after all these years of me being on home health.

But I'm off to catch up on Daria.
Love Yall
~Poppet

Side effects

Recently there was a hurricane, and though it didn't directly hit my area, it sorta went around us, we got a lot of rain. We also had evacuations in our area. This of course gave me a lung infection. I had to go into the ER and get my lungs checked out because my breathing was pretty poor. Then the side effects hit. Anxiety. I normally do not get anxiety. In fact I had to "phone a friend" and ask how do you cope?? This uncharted territory for me. 

I usually spend my time on video games. Yes I am that girl that loves videos games and I love music. I have a wonderful support system so to get anxiety I was rather concerned when it was getting the best of me. So I reached out and she confirmed "distraction." Many many people deal with this especially people who are chronically or terminally ill. Whats a good way to cope?? Why isn't this talked about more?? 

I usually do daily yoga/qi gong and mediation with daily affirmations. There are many ways to do all these with out having to stand. Especially Qi Gong. I am so blessed to have one of warrior as an instructor. I truly believe spiritual health in any form can help tremendously. "I accept." Is always in my daily affirmation. Mediation isn't always about sitting and clearing your mind. Really. Have you ever carried a full cup of coffee or anything hot and just solely focused on that and nothing else. Yep thats a clear focused mind. Closing yours and telling yourself over and over any affirmation is a form of mediation. Qi Gong is a form you can sit down and do. 

So you can't do that all day. What else can you do?? You know I LOVE video games so that is a version. I raise dragons and focus on them at times and sometimes im on MMORPG. Oh lego games. Some of these games you can join a community which the wonderful part of this generation the people you can talk to to is amazing!! I think my hair is my potatoes... oops. Anyways.

Adult coloring. I have a stack of this stuff. I will sit for hours and do this. I have a number of them from tattoos, to mandalas, to animals. Its away to focus your attention away from the constant thinking of your mind. You can also give these drawings away and brighten someones day. Theres also many other forms of art. Theres needle point, theres crocheting, sewing... my point is do something no matter how minimal. Sitting and thinking and dwelling on this stuff is the worse thing you can do to yourself. The mind can come up with some crazy stuff.

I truly believe that we have a choice to react to our disease or accept it and move on. We can not change the fact we have a disease, we cant change what has happened to us. We can choose how we react to it. When you put joy in the world it comes back to you and its a wonderful thing. "I accept, I forgive, I love." 

Love Y'all

~Poppet 

You got this.

I was just doing my morning Yoga, because I cant think of a good enough excuse not to, and todays mantras were in 3 parts. Some days my Yoga has mantras and its way to do almost a meditative yoga. And you repeat these words over and over to clear your head of any thoughts. I actually love meditative slow fluid yoga as much as I love regular yoga.

The first mantra was "everything is, as it should be." Sometimes thats hardest thing to accept. I am beyond guilty of this. If your read my past few blogs being locked in for the summer has gotten to me a lot. You start to get in the mind set "why me." I can give you there stereotypical answer of "because your strong enough to lead this life." Yeah no one wants to here that, and you just want to scream "aren't I strong enough already." Maybe were still in the process of learning to be content and present where we are. No matter the situation. I would love to be outside enjoying the summer weather but my reality is step out side in the summer. My skin burns, my heart goes up, my breath is gone, and im just over all sick. This mantra hit me. This is the way things should be for my life. Why?? I have no idea, but here I am.

Then the next part of my yoga journey came, and I'm doing variations of planks. Planks are hard. They are a full body strengthening exercise and variations of this are hard. The mantra came up "I am strong." That really helped me get thru the planks. So many times in the summer I sink into this cycle of self doubt. I question everything about my life and my disease?? I question how much more I can take. During the plank session thats what I need to hear and it really helped me repeating it over and over that I was strong and I got this. Now what if we applied this to life?? Think about your deepest hardest struggle. Now imagine if someone gently whispered to you, your strong and you got this?? Would that change how you thought of things?? Just because your friend is saying this to you doesn't mean your going thru this alone, its just simply a word of encouragement to get thru whatever it is your going thru. For me?? Getting thru the summer.

The last part was "you got this." It was the confirmation of all this. You can get thru your battle, you can get thru your journey. You strong, you are capable. Dont let the self doubt get to you. Dont let it eat you alive and break you. Sometimes thats the biggest part of the journey. Its just simply accepting where you are in life, embracing it, and reminding your self that you are right where you need to be, you are strong enough to get thru all this, and you can handle whatever life throws at you.

Love Yall
~Poppet