Life

Yesterday we got an iron transfusion. Though I was so nervous and my by the time I officially got the infusion I had 50 mg of Benadryl in me plus Zofran we got it started. It literally looked like she was pushing tar into my heart. For those you who don't know I have a central catheter and the line goes strait into my heart. I felt OKish at first a little feverish at the most so I thought hey I am gonna be ok. We even stopped to get coffee, picked up meds and home we went. Then it hit. I couldn't breathe.

It wasn't my normal CF can't breathe this was different this was my taking frequent short breaths repeatedly and Wonder Woman was kind enough to buy me the Hunger Games serious on iTunes so I just laid down to watch that. At this point I had taking more Benadryl and my body tried to sleep. My lungs were so desperate fro air in them I kept waking up. So I finally got up to express my concerns and it hit me hard. I was talking between breaths, and I could barely make it down the hall way. But I did, Wonder Woman took one look at me and I didn't even need to speak she already knew. I just found a Wonder Woman quote "I fight for those who can't fight for them selves" and yep thats her. She sent me back to bed, and I was in and out of sleep for a bit until right before 7 I asked for dinner and meds so I could just go to bed. Yeah that kind of bad. I was out most of the night and Rubes laid next to me protect me all night. She does that when I am feeling sick. I turned on twiggy our new fan. Or well mine I guess you would say. Its one of those Dyson ones that purifies the air because my lungs break at any stress recently.

After sleeping for well over 12 hours, I got up this morning reluctantly because I am still exhausted, and my breathing is still short, to do morning meds. Annnd my vest is reading error, it wont do anything but read error. I am coughing and clearing lots of stuff from my nebs alone and new I needed chest PT badly. So I texted my parents because one is never enough. I had already looked for all the information for the vest and such to find out they are a few hours behind me. Once I finally got in touch with them it turns out the machine is just broke. At this point I have no idea what to do, I need clear my lungs, I just have a flutter, and Wonder Woman is at work. My exhaustion is very real at this point and im just ready for a proper lung clear and a break. Breaks don't come frequently here at all. Its always one thing after another.

I wish I had a positive thing to leave you with but this is my reality some days. Its just chaos, and on top of all this because of my iron I am barely eating I went to cook and am to short of breath to do so. Oh heres your positive, the sweet pup I pup sit for came by to see my for a few minutes today. And his excitement translated to a full on butt shake. Oh how I love that puppy who so isn't a pup anymore lol.

Love Y'all!!
~Popppet 

Tears and Breakdowns

Theres been a lot going on and it doesn't stop any time soon, at all. I need to get my iron infusion, a lot of my levels are low, my lungs are poor, and im just exhausted. Then the guilt just eats away at you little by little. I know I am the reason for many of tears and the things that stick with you are awful. Seeing the one person who you depend on turn their back and just cry so you cant see them while your fighting for your next breath will break even the strongest person.

Since Christmas, we had procedure that took me out for a week and im still healing from, we had an emergency scan done, now we need iron, my PFs are super low and we need PFTs and its getting to the point we can not fight off the inevitable. We might need to start our journey. The one that everyone wants to embrace but at the exact same time we one to push off. Remember the last post when I said I am human to?? Well today I broke.

I couldn't hold back the tears anymore so after just staring at the screen and storming off and my friend knowing im just not ok I just broke. I right this with watery eyes. Im not the strong person people think I am. I am terrified of whats to come. My lungs are so weak, my levels are low, and I see the sadness I leave in peoples eyes and I break. You hear " you have one more infection left in your lungs" and you smile and say "CF messed with the wrong girl." You hear "have you gotten a blood transfusion your levels are quite low we need to get you iron soon." You smile and say we got this. And then your alone and everything adds up and you break.

How much can one person take?? Who knows. But how much can a person who is chronically ill take?? Hell of a lot that people simply dont understand. You say oh its just some iron. I have a flash back of the last infusion where my face swelled and I am took sick to move. I smile and say "go ahead and schedule it." I assure people all the time that im ok and I got it. But what about when I dont?? What about the times I feel weak and broken?? The guilt builds and you ask "what have I done to my family."

This is when I need someone to be strong for me. This is when I need someone to remind me that I can indeed do this and come out the other side. My reality is harsh. My life expectancy is 32. Im 30, we need to do PFTs and regroup. So today I broke. Today I cried while staring at a game screen talking to one of my favorite people. Who just listened to me cry while I explained all this in greater detail. Then the sweet poison ivy showed me a video of a fellow CFer taking her first breath with her new lungs and reminded me why I fought so hard. Today has been filled with tears, lots of them, and this journey is gonna get much harder from here and I am so incredibly thankful for the people who stand by because they love the girl behind the disease.

Love Yall
~Poppet 

Tears and Kitty Hugs

My lungs aren't doing great. Its what no one wants to hear, its what no one wants to face, but here I am. My lungs aren't great. I just hugged Rubes crying. while venting to Wonder Woman, after I had to frantically grab a bunch of meds with out letting my team down. Dont ask thats just how my brain works. I was slowly losing my breath, I was dizzy, and I could not get enough air into my lungs. I wanted to finish my game but I needed meds. So grabbing as frantically as I could to finish and close out my game. For a few hours of me working on my lungs.

This is a reality. This is my reality. My peak flows are low, im oxygen is up, and im just exhausted. This is not fair but its a reality I have to accept. What if my lungs are just getting to that point?? What if we need to start that process?? And my heart just breaks. What is this doing to family?? What about everything I want to do with my life?? And yet I just cry and hug Rubes the Cat cry into her fur and make my lungs worse but cleanse my soul.

This isn't an ideal life but this is my life, and somehow I have to make the best of it and thats what I try to do. I have goals and aspirations in m life, and as I speak between breaths, eat between breaths, I close my eyes and remember that just the day before while getting ready I told a complete stranger on the other side of the phone "I have an amazing life please don't be sorry." Why?? Because I do, but I am human and sometimes my reality for that moment just sucks. The reality of your lungs slowly going down hill and gasping for air is frighting, and the look of worry and sadness on your loved ones face just rips you to pieces. This is just a part of my life. Every life has tears and joys this is just mine.

My reality is harsh. Some of my wants are so trivial. Like working for a bow that shoots unicorns and rainbows (I am so not joking). While making the person who helps me do all this question every ounce of my sanity with the things I do. Me elaborate makeup and need for more is trivial and the most beautiful knife I ever seen that I must have is trivial. But what isn't trivial is my deep will to live and makes changes with in my community. I want to live to make food allergies just a normal thing with in hospital and not a nurse going "can some one just bring you food." I want to bring humanization back to being a patient. I am not just the girl with CF. I am not the girl with POTS. I am a soul that wants to be home rocking a cat in my arms because oh how cute she is. I am soul that loves to feed people. But to them I am just CF, I am just POTS. I am not me. I want to take away the stigma of being disabled. I want to change the world. And I am going to. I am going to change this world. I am going to survive this life in some way.

Today?? I cry, squeeze the cat, and take a deep breath... Not take deep breath cause well I can't, but focus on my breath and close my eyes and center myself. Remind my self why I fought so hard to get to this life. Why I fought to get to this moment, and then from there go back to fighting with everything in me.

You only have one life, and its up to you to make the best of what ever situation you were dealt.

Love Y'all
~Poppet

Small Update

Sorry this thing hasn't been getting updated regularly there hasn't been a lot going on besides recovery and doting over a cat that has been on freaking steroids. I am itching to get over to the All Fathers for a change of scenery but no one is truly comfortable with me driving yet. I got my stitches or sutures removed yesterday and though I am glad we our down to steristrips it was very painful yesterday and only to about 12 round of PvP in yesterday. 

Emotionally and mentally I am fully ready to get back into yoga but I am not so sure I can physically do it yet. I have been doing some minor movements to keep my body stretched and strong but to do a full on work out just seems a bit daunting. I might just do some qi gong. Low stress and no impact on the body just center my zen and not pretzel myself. That will also start slowly stretching my muscles. 

My peak flows have drastically dropped over the last couple weeks for many many reasons. One I couldn't do full on chest PT for a couple days, and the other was in order to get my procedure done because no one was comfortable with local anesthesia they get me 2 full doses of diladid which I was truly thankful for to get me thru everything it took a good 2 days to even take in a full breath which was just awful, then I missed 2 full days of Chest PT, and I had to slowly work my PT up back to normal. I was doing my flutter and using my massage setting on my bed to help out, it just wasn't what needed and then the sudden stop of Yoga it just all hit hard. I also had to skip a full chest PT last night to. My lung just are not great at the moment. 

As for what we are going to do with my lungs, well from I gathered the next step is PFTs and go from there. I was told my lungs have one major infection left and thats not what anyone wants to here. We all know transplant is inevitable. We all know I get frequent lung infections, and now add on top of some form of congenital IGG deficiency (theres a huge name for this) and we are working on that as well.

With all the bad thats going on, I have been working with Poison Ivy to get some things up and running. We are also working on getting a super secret project published and have the proceed be donated. Our goal is to have everything up and running this year and though it will take a lot of work I am sure we are going to make process eventually. 

Though I must go and disconnect I will finish updating soon.

Love Yall

~Poppet 

Lungs and Procedures

Its been a long week, and on my appointment to get cleared for my procedure based on my peak flows my lungs wont fully survivor their next full lung infection. I have mild chronic ones with my CF but my lungs have decreased again. I am doing everything with in my power to keep them going but my disease has taking a toll. Its heart breaking to here this. I am 30, I have my entire life to live but I feel like I am slowly losing this battle.

Before I went in for this appointment I knew my lungs weren't great. I am constantly short of breath and its evident. I do what I can with yoga, I eat a healthy diet, I meditate, and I take all my meds as prescribed. Yet I am sitting here telling you my lungs aren't great. And it sucks. Its heart wrenching but we knew this day was coming but since everything going on was a bit more needed we have to wait. We have to wait until my body is fully healed so we can get an accurate reading. I try to keep it together, I try to be strong for everyone around, but after my procedure all the drugs I was on. I cried for the rest of the night until I fell asleep.

I made a promise a long time ago to Poison Ivy she wouldn't have to go thru life with out me but here I am praying once again I can come back from this. Can I come back from another drop in lung function?? Can I come back from all this. Though my yoga keeps me at a decent steady number its not gonna be a forever fix. And the look I get when I told her Wonder Woman this, the text I get from the All Father, the defeat in peoples voices. Its so hard not to break myself. Its so hard not to let my emotions gets the best of me.

We know this day is gonna come, we know transplant is inevitable, but the sadness it brings people just breaks my heart. But yet I fight. I fight to push it off, I fight for another day, and some days I lay in bed and just fight for a next moment.

It has been such a rough week that Rubes the Cat sat next to me, put her nose to lips and licked my nosed to tell me it was ok. As I lay here recovering, and fighting to feel better. I get a text that my favorite pup is clean for my next visit and here I am fighting for my next moment. Or just a moment to not cough thru a game. Just a moment.

The only thing I can tell you is this. Fight. Fight with everything in you, fight with me and fight for me.  If you are going thru this in your own way fight just like this. Do not give up. You can break but you can not give up. Find a reason in side you for you to keep pushing on. To keep fighting. Find whatever it is within you to take a step forward each day. Love yourself and embrace your ups and downs.

Love Yall
~Poppet 

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.