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

Life

This summer has been spent exhausted and sometimes even on Skype crying to Spider Maker. By this I mean literally crying because I am just over whelmed and exhausted where this disease has taking. Its summer so my lungs aren't great. My heart rate is up, my PFs are down, I havent had the chance to see the All Father since June and I've barely gotten out of the house. Its also a struggle to 10 minutes of yoga. So you could say the exhaustion and frustration got to me a bit. When they ask me whats wrong the answer is simply "nothing im fine." 

Which there is some truth to that. Nothing really is wrong, I truly am fine. But heres the thing. Exhaustion gets the best of me. And I become frustrated, a season I use to love is simply taking away from. No pools, no puppy sitting, no tattoos, just simply me existing in the house while the world goes on around. Its not ideal but it is my life. So I do my best to stay busy. Which is usually my game. (I just got my legendary wings). Theres nothing more terrifying then stepping out your house and feeling dizzy and short of breathe because its so hot and humid you cant get a proper breath in. Doing yoga, in certain its short quick breaths over and over instead of fluid in and out serene breathes. And it absolutely gets terrifying. Then the worse case scenario thoughts pop into your head. You start to panic and you really have to get out of your head to calm down and focus. 

I use to tell people Im just and ordinary girl leading and ordinary life. But my life isn't so ordinary anymore. Things can be a struggle. Its not what people want to here but its my reality. I spent most of my day in bad because I was just so exhausted from picking up Rubes the cats anxiety meds. My life is not ordinary and some days its just so hard to cope. Sometimes life gets the best of me. But you know what, life gets the best of us all. This isn't a me thing. Its a life thing. If it wasn't CF it would be something else. 

I truly believe we are here on this planet to learn something. As far as what, well thats are own personal story. Maybe mine is to love and accept inspite of the impossible odds set against me?? Maybe its to find kindness and compassion in a place where people wouldn't hold it against me if I was just angry at life. Maybe its none of those. Life is not meant to break you, even though sometimes we all feel like it is. Life is meant to be loved and enjoyed. Its meant for you to love so deeply and passionately no one can question it. We all go thru some trial and tribulations and a lot of the times its to learn. 

I am not saying you cant be angry, sad, or defeated. How else do we learn?? In order to grow we have to be uncomfortable, we have to find those boundaries and accept them and not dwell on them. I have felt all these emotions and still do. I have cried several times this past week out of pure frustration. That is ok. I will cry again out of frustration to. My life is not what people consider ideal, this is all I know. And thats ok, they dont have to. But those who love me, inspite of all this, well their pretty awesome and I appreciate them more then you'll ever know. 

Face each day with love and kindness. And to the old man who let me cross the street today. Thank you. You are the only want to stop while I stood in the heat to cross street. You helped this little sick girl out. 

Love Yall

~Poppet 

Saline and Summer

While I am waiting for an event to start, I figured I'd up date this because I've been pretty MIA recently. Ive been grinding out my game to get legendaries. I ordered a plush from the game and gave Wonder Woman the sacred and blessed duty of keeping him safe and loved. I love those silly things. Their literally a cactus that shoot spikes, and have the typical cheshire sharp tooth grin.

I knew this festival was coming, it is PVP season even though I let that slide a little bit for the festival and leveling characters but going into this week I wasn't sure where id be. Home or the hospital. I saw Superman recently and he put me on 4 liters of fluid and it was a bit difficult to get that at home. We finally got this worked out and was a popsicle all week. Freezing cold wrapped in blankets whining thru the week. I made it work and I got to stay home. Also in the midst of all this I got to meet my twin!! I have no idea what her super hero name will be yet. I stopped by on the way home. One of the girls that knows me told me how well and healthy I was looking after I got all this news that were looking at an admit if we cant get my IVs sorted at home. My PFs are low and still not great, but my heart rate is down again.

My resting heart rate was about 120. Not sure what is is now as I am out of triple A batteries but I dont feel my heart pounding out of my chest. So since resting was that high, when I was upright or talking it was hitting a bit higher then that. Which a bit unnerving and the side effects of all this is a bit unnerving. Also my lungs were overly congested and dehydrated themselves (why I hate summer). So it looks like I am in the house for the rest of the summer. Its just to risky to go outside it seems like.

I am not sure what the rest of the summer looks like as of now but I must get to this event of mine.

Love Yall
~Poppet 

Yoga

As you saw in the last blog summer is here and it brings its own struggles. It all has recently caught up with me. I have been getting increasingly short of breath to the point after I went food shopping with Wonder Woman I literally sat on the floor to catch my breath. Its not fun. That was sorta the kick off the entire weekend. I was talking to my friend and my breathe was so short, I was exhausted, and I went to get Wonder Woman. I couldn't even carry a pitcher I was so short of breath. So we started antibiotics. They seem to help for now. Which all this made me think of the time I was helping someone on the game I play. Its one of those you can play with a bunch of people all over the world. He told me I had such a positive attitude cause I do yoga every day and I swear that I am just an average and he kept telling me over and over good for me for being positive and wouldn't accept my wonderful life. I did stop talking to him.

But heres the things. If anyone else would get up and do yoga or exercise in general they just be an average person trying to stay healthy. But for me?? A person battling a terminal illness im a positive thinker. Why is it so different for me?? Because im ill?? Because we have such a mindset that someone who lives with such a devastating illness is nothing more then that?? This has clearly stuck with me and I stopped trying to change his mind. And as summer has start to roll in and the struggle to do things has come along with its made me wonder. Am I just being positive?? The answer is no.

I am doing what I need to do for my health. I am taking control of my life and doing what I need to do to be healthy. I am trying to break this barrier that because I am ill doesn't mean I am so poor person thats been dealt a bad hand in life. We need to empower people who are chronically to live and not just exist. What is life if we just exist?? Why aren't more people empowering us and learning from us how truly beautiful life is if we just slow down to experience it?? Yes our lives our extremely different from abled bodied people. Some of us our soul job is to take care of our bodies. It does make us different but it doesn't make us any less then some one else. I have always said in this blog my CF and POTS is just my something extra in life like we all have. Mine is just more evident as this stage.

Why did yoga start all this thinking?? You see I love yoga, I always have. I use to do yoga before I went to work. I use to do pilates as well. I was talking to Wonder Woman recently about my love for yoga and she pointed out its something I have always loved. Even before I got sick. So why should I stray away even though im connected to all these tubes. Then Z one of my long time friends treated me as the same girl who need 13 years ago. He was curios about the art it wasn't "aren't you to sick for that??" it was yes!! Id love to get into it. And those are the people to surround yourself with. The people who love you and support you for you not your illness.

Love Y'all
~Poppet 

Summer

Summer has hit, I have always struggled with summer. Even as a little girl we'd have to limit my time outside in order for me to stay stable. My face would flush, id get super dizzy and we'd have to get me into the cold AC asap. It got to the point if I was allowed outside it have to be in a pool. Now a days we have Doxi and Steroids to add to the mix. Which means my skin burns incredibly easily. The day before I turned 31 the All Father took me to the beach with Frigga and theres a pic of me on the beach in long sleeves and it came down to my feet and I kept my hair down that day to.

Because of these meds I can sit in the sunroom and my skin will start to burn which is so odd. Im reaching out to fellow CFers and going help?? How do you cope?? More so how do you balance the protecting your skin and staying cool at the same time. Sunscreen is not the answer. I know sporting stores sell these long sleeve summer shirts that help keep you cool which I might just need to invest in.

Then there the fact my body depletes salt. Which I mean I take a lot of salt, run my fluids, and eat salty snacks. But its still a concerns that must be looked out for. There could be a sudden drop in blood pressure, your blood counts can get low, and you almost have to take replacements. With CF theres elevated salt in your sweat. POTS also depletes salt, so I sorta stay in the house all summer.

Many people are shocked this is my worse season. But the reality is I am not just fighting my disease but now I am fighting the elements. Do I have my skin protected?? Am I cool enough?? Did I take enough salt?? Do I have enough water?? Did I pack a bag of saline?? This is when I catch up on reading because I am trapped inside so to speak. I do not know how to handle the out doors but I know how to handle coping with being stuck inside all the time.

Video games, reading, and cooking. I cook a lot. Oh gosh I got a phone call from Frigga earlier this week asking if I wanted fresh garden veggies. YES!! I made this beautiful rainbow tomato pasta, with fresh basil, and jalapeños. This my own recipe. Its not even a tomato sauce its just cooked fresh tomatoes. She brought me this beautiful white watermelon. Which is not as sweet but very refreshing. OK back to summer. Actually that is a trick for me to stay hydrated. Fresh summer melons.

Summer is harsh, especially down here in the south. Sometimes the best thing you can do is just stay inside and cope with the not ideal. Some times having a disease is choosing whats best for our bodies even if our mind is fighting to do the opposite. Yesterday I had to do this myself. I just wasn't feeling good and had to choose my body over my game that I was steadily working on. I got so sick that I had to pause everything and lay down. Which I guess the point of all this is. Remember to listen to your body. Remember to take care of yourself. You have one life and one body. Also its cooler at night when the sun isn't trying to burn your beaitufil skin!! The ocean is so peaceful at night to!!

But I must go I have a Rubes who is scared of a vacuum and needs an escort to the sunroom.
Love Yall
~Poppet 

Birthday

Tomorrow I turn 31. I wasn't even supposed to see 28 but I refuse to stop fighting, I refuse to quit pushing to stay off transplant list and keep my own lungs even though some days are super tough. Why?? Because of days like today.

This morning I woke up early, got coffee going, did my treatments, and started my morning routine, today was the day Frigga and the All Father were taking me to the beach. I had the options of two different places and I chose the place I first got to spend the day with Frigga. Maybe its because it was a wonderful memory or maybe it was because I need the refresh on my soul. You see the place I went which is by the ocean is a spiritual center. Its not like formed religion. We went stopped by the front desk and the one person saw my chest and asked if I had surgery I smiled and explained no no this is my IV and I have cystic fibrosis and she immedately wanted to help. She talked to us, and I explained how Frigga had helped me over the past couple of years with different homeopathic things. So we went upstairs to meditate. Meditation is one of the things I have learned to center my self and spirit. After a mediation with 2 of my favorite people over looking over the ocean. We went to the beach.

I put my feet in salty water while I breathe in the salty air to break up the junk in my lungs. I chased a crab the size of my hand and put and itsy bitsy shell in my bag. I breathe and coughed and I got re center my soul. This past year hasn't been easy, in fact the last couple of months I would like at the All Father and asked for the ocean to reset my soul. I needed to breathe in the ocean where my heart belongs, where my soul belongs, and just reset myself. They got a pic of the moment the cold ocean water hit my feet. I got to breathe in all this ocean air and I was just at peace. That moment was peaceful and I was with people I loved.

After that we googled and googled and found a safe place to eat. It was this safe sweet little place and I got to eat this beautifully plated salad and they were wonderful with my food allergies and they were all so so kind. I was so appreciative of every one that surrounded. The sweet lady who talked to the kitchen, and the people who altered there meal to eat with me. That is love and thats why I fight for this life. Because of days like today,

Be present and just love.

Love Yall
~Poppet