New Years

Christmas has come and gone. I have a busy weekend and had no idea it was Thursday until home health called me. I am so backwards and just exhausted. Not as bad as I was, but 2 days of going non stop really takes it out of me. I am so thankful I got to see the family that loves me. Sunday I had to drive so I was very concious of what I was taking into my bed and with my low weight I am trying to up the amount I eat.

I have a lot going on health wise and most of it we can not do anything about, and the other part I am waiting to see Superman to see what we are going to do. We have a few things ruled out so its all up in the air at this point. Worse case they move my line is what we are thinking, I'm not looking forward to making people take time off to help me out a bit. I make people worry enough as it is let alone add more burden to their life. On top of that my lungs don't have a lot of give in them. I am often just exhausted and short of breath. I constantly try to keep up, but my lungs just make me so tired.

It could possibly be the amount of stuff that I have put on my body this week, it could be my poor weight that I am trying to remedy, or it could just be my lungs getting bad again. We got them stable before I am sure we can do it again. But there always so much uncertainty around my lungs.

Its once again a new year and I have no idea what this year holds. The thought of being told my lungs might get me to 32 with out needing new ones is also there. Its also  Tis the season for lung infections and with my new diagnosis of congenital IGG deficency is also playing a part in this I am sure to. I don't have the immune system to fight off being around new people, or a lot of people. Which comes with the holidays. Which I should be going back to my normal life soon with only a certain group of people round me. That should help with me not getting sick as well.

With a new year a couple days away I am going to remind myself this: Its ok to let your lungs have a say, its absolutely important for everyone to listen to their bodies. Check in with yourself and allow them to have a say in what you do, or your body in general. Be present in the moment. Be with who you love. Put your phone down and just embrace the people around you.

I try to make it a point to mediate every morning and do a small form of Yoga to let my body direct me on what we need that day. Do we need more Benadryl?? Do I need extra treatment?? Or just rest??

Whatever this new year brings you, do it with love, peace in your heart, and remind yourself that no matter what you are exactly where you need to be. Some days where we need to be is not ideal but its exactly the thing we need.

Love yall
~Poppet. 

Be present

I just looked at my calendar and its 2 days until Christmas Eve and 3 days until Christmas. I am not ready. I am not a fan of Christmas for many many reason. I can be your classic scrooge but with an attitude of how can I make peoples lives easier. I am not ready. I am exhausted, and I have a pile of presents next to me that need framed, and wrapped. I can't explain what I have here because I do not know who reads this.

So far this I got to see Santie Clause with the All Father which I love to do. Its something I look forward to. I look forward to giving people presents. I just can't deal with people who come around once a year and give me looks of pity because they have no idea what my daily life is like. They just see me once year and see how my health has progressed. Im also sitting here exhausted trying to gain an once of energy to just do something.

I broke down yesterday because we had to do an emergency ultra sound of my line. Thinking of all worse case scenarios, thinking of ruining everyones holiday, and possibly no more tattoos. I just broke. While I was at the ER I was in the room I almost died in and that didn't work out well either. My nerves were shot, my emotions were shot, and the sound of Wonder Woman voice breaking holding back tears makes me cry to this day. I think of the most trivial things and take selfies or play on my phone to destract myself from such a harsh and brutal reality. While my warriors think of worse case scenarios. Now that I am here crying for them.

So often in life we focus on something trivial to distract us from the real issues at hand. I do it all the time, I choose to live in the moment because things can be taking away so instantly. We were potentially preparing to have Christmas in the hospital to me texting the All Father right after he was done praying that I just have nerve issues in my arm. We are not sure why. Well we have are guess but the reality is we just don't know. There are so many things in our my life that we can't predict, there are so many what ifs we have in life, and we just distract our selves so we don't think.

I remind me people close to me all the time. I am ok, don't worry to much. But its easier said then done. I get it. Though a certain amount of worry is ok, which is why I say "don't worry to much," but we can't let it over whelm and break us. We can spend so much time worrying about that what ifs the we forget to be in the moment. We forget to take advantage of the here and now. We our in a season where we are so over whelmed with things that need to be done, that we forget what is important. We forget that we need to be present in a moment. We need to be with the people we love.

No this isn't just some holiday realizition. I have been saying this for a long time. Living with a terminal illness makes this very real for me daily. I can't predicts my health, or what my life has in store. But in this very moment I can say though I am exhausted I am here. I am surrounded by people who love and don't care where I am at or if I am put together. They love for who I am.

Yes I have presents that need framed and wrapped. No I havent finished shopping, but right now my body needs some TLC and today thats what I am going to do. I am going to be present, I'm going to dry my tears and rest my arm as much as I can. And I just might ask Wonder Woman for some help framing things.

I love Yall
~Poppet.

Love the life you have,

My computer is almost dead so hopefully I can get this on here before it dies...

I was recently talking to Wonder Woman and she wanted me to meet someone she knew who is in kinda a rough place. I can't go into detail about why or what is going on but when I ask her why she told me it was my mind set. I won't let my health stop me and she's not wrong. A couple things happened after that and this is what I am left.

I can not control my health or my future. I can't control how my lungs will be this afternoon, and anything can happen between now and then so embrace the moment. Embrace every single moment you have. The good. The bad. The sorrow. The triumphant's. Why?? Because we only have one life to live. We must embrace who we are and who is around us. Anything can be taking away from us at any time. For me my life has slowly been torn away from me over time, others its in an instant. Both are equally hard in their own right and sometimes we just don't understand why we were the ones chosen to live is such destress. We don't understand why we are the ones that have to make our families cry and worry every moment of the day. It can break even the strongest. And you know what?? Thats OK. Cry it out, admit your broken, and move forward.

When I was first diagnosed I was lost, confused, and scared. What does this all mean?? How will this affect the people around me?? What does this mean for my life?? My career?? And you know what I made it work. One day at a time. None of this happened over night. It happened over the process of a couple years. As my lungs get worse, I have to adjust my days, I have to adjust my meds, and how I cook. It sucks and sometimes I just sit and cry because one more thing has been taking from me. I gather myself and move on.

What I am trying to say is never ever give up. Your gonna have some days your left absolutely broken, you gonna have some days where your gonna rejoice and all of them are worth it. You may never know why this happened to you. You can still make the best of this life. Looking back on the past years theres so much I wouldn't have been able to do if I didn't have lung disease or food allergies. I got to talk to the person who ran an anaphylaxis non profit and talk about my life with MCAD and she knew CF to. I got to educate nursing students about my insane life, and teach people that life isn't easy but this is what I do. I would not be where I am today if it wasnt for my health. And you know what?? I love my life, I love where I am in my life, and all those struggles to get here. To be me. To find myself. To truly know who I am and settle for nothing less. Well that was worth it all. Could have I done all this with out my diseases?? Maybe, but maybe not in my 20s and maybe not have the love for life I currently do.

Love Y'all
~Poppet