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

Thanksgiving

My lungs are doing so great. I already had 2 doses of antibiotics and my peak flows are still a bit down. I can't do as much as id like some days either. I wasn't even sure I was going to be able to meet Friggas sister when she came in for Thanksgiving. There not much or anything I look forward to when its the holiday season. I have food allergies and not a lot of people are understanding. I have allergies to bringing in decorations and Christmas for me in general isn't that great. We won't get into that to much tho.

The one thing I was really looking forward to was meeting the other Ms J. I don't have a nickname for her yet. From everything I had heard about her from being a ball of energy to asking if she needed another rock for her collection... I really just wanted to meet her. I was feeling ok that weekend so the All Father came to get me and we went back over. I was asked if I wanted to go thrifting I politely declined as I am terrified of germs but they weren't gone long and I got to the meet beautiful soul that is Ms. J. When I was warned about the ball of energy I was they were not wrong and what a beautiful soul she is.

One thing that stayed with me is what love means to her. Love is accepting an offer that some has for you. Whether its a trip, a hug, a snack, or whatever it is accept it. This could be a persons way of showing love. This could be their way to say "I love you let me do something for you." The other thing is do whatever makes you happy!!

Sometimes we get stuck in these ruts of wanting to get things done and it can be emotionally taxing. We all have those things that way on our mind that is emotionally taxing. We constantly worry about that one thing until we are a ball of nerves and our just upset and we can't shake it off. We are so focused on that "to do list" that sometimes we forget to be in the moment. We are so focused one what or who wronged us, why something happened to use that we forget to be thankful for whats in front of us. We forget that things can wait so we can be present in a moment that we might not get back.

Sometimes things can wait. Not everything of course but being present in a moment and being with a soul is so much more rewarding then a perfect winged eye liner. Dropping what your doing to reply back to someone in a busy day can mean more to someone then an object. We are into a season of being thankful and having peace on earth. But why can't we have it every day??

Change in the world starts with us, and Ms. J is that change that this world needs just like the rest of the people who surround me. They go above and beyond to sometimes just hold on my hand when I am worried, or they are there to celebrate and be thankful they have a moment with me. She is the living bubble of joy and energy that I strive to be and want to be. She reminded me that I am fragile and I am deserving of love just like every one else. Though she doesn't know a lot of my background like most she's so right. Every one is we just need to embrace the love we receive and embrace where we are in life and who are journeys have molded us into.

Love Yall
~Poppet.

lungs

My lungs are a bit rough. I am sitting here in bed waiting to do treatment with really high oxygen blowing into my nose, between coughing fits and being short of breath. Saturday morning I was very symptomatic and by noon I had taking 4 grams of salt, got myself together, and went off for pizza. My lungs had no give in them and I was struggling to get to the table. Id tell you its day in the life but usually thats a sign of something deeper going on. Sunday I was coughing so bad that Wonder Woman got out of bed to check on me, I somehow made it to her tattoo appointment with a frequent cough. Come Tuesday I am coughing and wheezing and getting rounds of chest PT and calling Superman. This isn't good, probably just a seasonal infection.

I am still waiting to here back from someone between being frustrated and exhausted I asked Wonder Woman about my biggest fear. What is my lungs are failing?? It couldn't come on that fast could it?? She told me it could and with CF anything is possible. My heart broke. Every time I get in these situations with my lung infections I always fear the worse, what if my lungs are failing?? Why out of no where did my lungs take a sudden turn for the worse?? Why did I just wake up Saturday morning being overly symptomatic sitting on the floor to take a good pic of my makeup because walking get steps to my chair wasn't enough. 

This is what constantly goes thru my head when I am not feeling good. Sometimes my head is a scary place to be. I have such a love and passion for life. This disease seems like it constantly holds me back, constantly shoves me down, and just takes everything out of me. I fight for some sort of normalcy. I fight for just a simple non forced breath. I just want to be able to walk Rubes into the vet with out effort, I want to paint my face with out oxygen, I want my nervous habit to not pushing my oxygen up with my lip. But my reality isn't that. Its harsh, brutal, and just down right devastating. 

I have come to accept my life as it is. But it doesn't make living this life with these lungs easier. I am so tired of explaining to people my brutal reality. To just here "stay positive." Behind all you see and between me venting I am positive, I have a lot of hope in this world, and I have things that I truly love and people I truly love. They are more then enough reason to keep pushing and fighting. But no one sees the brutal reality I face unless they truly listen and truly know me. Im a fighter and will stand my ground, and I will cry, break down and scream. Which is ok. Whats not OK is giving up. We do not ever give up. We stand. We fight. And we will never back down. 

I was giving a hard path in life, and I'm OK with that, some people were give the path to share this life with me and they are true angels. I always call them my warriors because my life isn't for the faint of heart. And I fight with everything in me, and they fight with everything in them for me. We fight together. 

Love Yall

~Poppet 

Tis the Season, no not a Christmas blog already

Last week I had a lung infection again, right after this I found out my body has no antibodies to certain bacterias with no real answers, and I have spent most of this week short of breath or coughing.  I have been playing this game lately and I have these cute little halloween spiders that deserve so much sound effects and uhh my lungs have not always been able to produce that sound and I start coughing up a lung. So I of course needed to text Wonder Woman and her reply was "maybe another round of antibiotics" then I put up a fight and she reminded me "Tis the season." 

What does she mean by this?? Tis the season, for weather change, Christmas decorations, lots of people in and out of the house, and allergens every wear. My lung function drops in the summer because of the heat, then I get back to back infection in the fall and winter. I also get frequent allergic reactions because people eat things and not wash their hands before touching things. Yeah something that simple can trigger off a reaction. Its so easy to trigger off someones allergies and when no one is being responsible it gets hard to control things. 

A lot off this is out of my control. I can't make people listen and I also can not make people wash their hands so what do I do?? I grab everything with something over my hands and I wash my hands a LOT. I have OCD so they get washed a lot anyways and they wont treat me because of this scenario right for one. Me obsessively washing my hands kinda keep me alive as sad as it is. The other thing I do?? Call Superman. We have already done one round of antibiotics and I am trying to stay on top of my lungs at the moment because I got a few things planned tattoo wise that I need to be healthy for.

I am really not sure how to make all of this easier. I would tell you to be open and honest about your allergies. I would tell you to educate but when people do not want to listen the best thing you can do is remove yourself or take extra precautions. Some of it people will call you over paranoid for but its your life on the line their opinion is void. Wonder Woman is usually my biggest advocate and will stand by my side and fight for me. I also have the All Fathers to hide at.

I wish I had a piece of advice for you to cope with people who just do not care but I haven't figured it out yet. I am still working on this one. Me personally I just avoid the situation at this point because its not a one time thing, its over and over again. But smile, bring your own snack its OK, and don't let a grump ruining your time. Yes sometimes words hurt. Yes it sucks when people do not care about your well being. But why be around them if thats the case??

So yes, Tis The Season to fight for no allergic reactions, few lung functions, and staying out of the hospitals.

Love Yall

~Poppet 

POTS awareness

Its dysautonomia month, and I know this is something I never touch on much anymore because my POTS is typically under control and it doesn't bother me as long as I am doing what I am supposed to do, and theres isn't a major storm hitting us, but being that is awareness month I figured I'd touch on my POTS a little bit.

If you do not know what any of this is, well dysautonomia is the dysfunction of the autonomic nervous system, this is the system that controls everything you do not readily think about doing, like breathing, kidney function, heart rate, digestion and a few other things. There are many forms this, its like basically saying I have lung disease. Well what type do you have?? CF, is much different the COPD which is also an umbrella term, which is different from asthma, and so on. With POTS what basically happens is my body can not control my heart rate, my blood pressure, or my kidney function. Which leads to an interesting life because on top of this I still have cystic fibrosis.

I have a few of my EKGs on my body so instead of talking about the ins and outs of what POTS is and what is does in my body because its all in here somewhere I am going to tell you about my tattoos. Its a very common question I get, and I have a few tattoos for my POTS as well as my CF.

On my chest I have an EKG from my first MRT, which isn't the the worse EKG I ever have, probably won't ever tattoo that one on my body. When trying to diagnose this disease my heart actually stopped, we stressed my heart out to the point it stopped. I have also been in v-tach which is also deadly but that not on my body either. So yes I do have a history of dysrhymias and I have often been threatened with a pace maker. But the tattoo on my chest is still a pretty dark story. I was actually admitted for a lung infection, and any time the lungs do not work, the heart gets stressed out to. What most people over look is the rapid breathing can also lead to dehydration which was completely over looked and my heart started to crash out, I couldn't get any air into my lungs at all and they had to call an MRT. This what they call to keep you from coding out or heart stopping issues. This was right after Wonder Woman left and she had to be called back in and the All Father came as well. I was clinging to life, couldn't breathe well at all, had an allergic reaction in the ICU, and well was pretty traumatized over all this. So in order to heal a little bit over all this me and Wonder Woman got it tattooed, one is the actual EKG from the MRT it read a 56 year old having a heart attack, I did not have a heart attack but my heart and lung did take a beating that day.

The other is the one I just got with Poison Ivey, she has been a pretty big part of my life and she is the one person that is always by my side going "were getting you new lungs." Its not a well... maybe... Its a confident positive light by my side that is unwavering. She is even wears purple and red lipstick for me because she's my little fellow villain and a hero in my story. She loves tattoos so we decided to get matching ones, a moon for me, a sun for her, and a quote to go with it. It starts on me and ends on her. Im her dark friend, goth/punked out most days and my story can be quite grim and never for a moment does she let me believe that. So we found one my EKGs and my heart rate resting that night was SVT, supra ventricular tachycardia, at 2 am and me doing nothing at 156 beats a minute. Doing nothing my heart rate was that high. I also had it much higher one night in the hospital but I do not know where that EKG is at. I am sure while I was in for both of those I was having issues with my lungs as well. Since Poison Ivey is one of my biggest advocates, and does everything she can with campaigns to raise awareness for not only CF and POTs but organ donations to help not only me but people like me. We permanently put our story on ours bodies. Yes our story, because this isn't just me this is us. She does everything she can for me so I can have hope of a stable life. So I can hope for a new life, and she does everything she can to let me know I am not alone in any of this.

This is what POTS is, outside of me running and IV and not retaining any fluid, its being in the hospital with my heart beating out of my chest, and praying for relief, while Poison Ivey is there to hold my hand and help with my financial burden and as well as awareness, its your heart going crazy and beating out of your chest while people surround you working on you to keep your heart from stopping. Its being breathless and sitting on the floor to hopefully calm your heart down so you don't fall down. Its a friend in the least likely of places holding your hand saying "we got this." It Wonder Woman changing yet another dressing, its the All Father carrying a heavy purse. Theres so much more to my story then I allow the average person to see which is why I have this blog. Sometimes its sobbing on someones shoulder asking for a bit of strength when I can't stand on my own, and other days its the girl with a smile on her face where nothing can stop her.

Is this a great awareness post?? Not really I could fully educate you on what my body does and why. But my brutal reality can some times be just as good. Don't judge a smiling face and think there ok, sometimes theres a deeper story you do not see. Take the time to get to know someone and not what you think they should be.

Love Yall
~Poppet