Love your life.

I just got up and made some coffee after resting for a bit waiting for some Zofran to kick in. Some days this is just my reality. Its not ideal, I need to get some things done and in bed half asleep is where I was. I also had a migraine early this week that also left me in bed snuggled up. Tho my life isn't always ideal but this is my life.

I almost never tell people I have Cystic Fibrosis. The reason is as soon as you tell someone you have a disease that is as severe as this one you get pity, you get sorrow, and its a hot topic for conversation. They are so focused on CF and oh my gosh your life is "crap." They never stop to listen that my life is actually pretty amazing. You dress this is issue and its "stay positive it helps." And im left rolling my eyes in frustration because they are so focused on I do not have what society deems an acceptable life or my life is just different. Which it is. But theres a difference between being positive and just accepting your life for what it is.

Being positive is more along the lines of texting the All Father like I did the other morning a pic of Rubes under my chin asleep, I explained I have been battling a migraine. I got up did meds, tried to function, gave in to my pain, and laid down. Then I told you know it wasn't that bad of a morning. I was laying in bed, got a small nap, and my cat saw I was in pain and purred under my chin to make me feel better. Positivity is focusing on the good like a snuggle from your favorite.

Telling a person that they our being positive because they are so set on the fact that your life isn't ideal, or societies base of norm. You automatically have a bad life. 90% of the time this how the convo goes. According to society I need to start a family, have a career, and a social life. I need to not be sick, not have to spend my days doing meds to function. So they see this is bad. Sometimes I think people are conditioned to see my life as bad. Im on oxygen, Im in pain, I take a lot of meds, and hours of my life is spent on keeping these lungs in order. But that does not make my life bad. I have such a wonderful life.

I have a career, I have friends that love me, I have my family, I puppy sit, I do yoga, Im involved with a community, and I have a passion in life I get to follow. How amazing is that?? Yes I do have a terminal illness, yes I do spend a lot of time working on these lungs, but that does not change the fact that I have been blessed which a strong team of warriors. I have been blessed to choose and follow a career. I am blessed because I love and am loved.

Are there days I break down and cry because I am just frustrated with none but bad news?? Yes!! Read the past few blogs I have posted. They are filled with sorrow and tears because I need to let it out because even I need a moment to grieve for what I have lost to my disease. But in all reality I have gained so much more. I see life thru eyes most people will never get to see. I get to see the true beauty that life has to offer and know how precious and beautiful life can be. I dont have this idea that I am gonna grow old and what is my life gonna look like. I have the hear and the now and do whatever I can to make the most of it.

If I can leave with anything from all this, do not assume someones life is bad because its not what society deems as ideal. Live for each and every day, get and believe that you have the power to make this day beautiful. Take a deep breath and smile and know that one bad things can not and does not determine how your life will end up. I am so blessed to have a guide thru life that teaches me sometimes the best thing you can do is be in that moment. Put the phone down, shut your lap top, and interact with those around you. Look past their desease and look at the soul. As Frigga says to me :I see past the makeup, I see your soul."

Love Yall
~Poppet 

Rare Disease day

Yesterday was rare disease awareness day, which I live with daily. Cystic Fibrosis has taking up so much of my life. And as my lungs slowly start to go down hill, I spent a lot of yesterday doing well a video game I need a million more XP for something... Thats just a side perk of CF.

What you dont see and what my poor friend had to listen to this morning is the hacking and coughing after mucolytics, I got on game right after treatment this morning which is super rare because every time I did something obnoxious with my tonics I would laugh or make sound effects and thinned mucus would move. Of course when I got on this morning I said hey just did my meds prepare the coughing and the wheezing. And boy did I cough and wheeze. And I ate a lot of calories and was trying to come up with more ways to get a high cal count in. And then I ate some more to eat some more to do some Yoga to drain my lungs.

POTS is also kinda rare though there is some debate if its truly rare or rarely diagnosed and this is the easy disease to me, run some saline, take my meds and im good. But what you dont see?? Dressing changes, appointments, the placements, and the tons of supplies that I have shoved in every corner. Literally every corners. The loads and loads of salt I eat and the mast cell disease to go with it?? Benadryl. Lots and lots of Benadryl. The hives, the blisters, the lack of food I can actually eat, the lack of meds I can actually take and because of both of these disease the dysrhymias.

I also have a couple anemias which isn't terrible but the med side effects are, and my lung function is so so so poor my cat is literally ripping her fur out. Because she is so use to me lungs going down hill she knows what it ultimately leads to. Im not to sure how rare these are I never actually looked .

I also have a form of IGG deficiency that I was born with. 1 in 50,000 people have this disease and why is this so bad?? Because I cant fight off infections which sucks because not only do I have CF I have high IGE levels so I cant properly fight off allergic reactions either.

My life is a complex mess, what can go wrong will go wrong, and we embrace every step it leads us. We embrace life with open arms and we never take a single moment for granted.

Love Y'all
~Poppet 

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