Laser

So this week as I stated in the last post, I was lent a laser that my friend swears by (I am leaving her anonymous because I do not know how much she wants me to put out there)  but everything I drink is lasered, and most food and meds I take are lasered to. And though I have plaid with one of these before and new going in what they could do I didn't expect this to be so powerful.

I followed her directions of use with and then I got put on a few harsh medications. Some that leave my exhausted and lying in bed unable to move from share side effects, let alone the awful side effects of prednisone. Though it has gotten the best of me, and I have been asked several times if im ok because im just trying to keep it together this round hasn't been all that bad. I say this knowing all this could lead to an admittance if my PFs dont budge.

So as I sit here not feeling as bad as I should, and my strong team behind me, as we are trying to figure out if we have, damage, swelling, or infection. I am working incredibly hard to stay home for the most trivial reasons. I also have a tattoo to care for, so I began the journey of lasering everything. Not only did I spill it everywhere I began to notice a positive difference in how my body is handling this round of stress.

My tattoo is still in the ouchie dont touch it healing stage, still a bit swelled, my pants dont fit (is this what normal people feel like??) and its already starting to peel which is amazing, very few tattoos have I ever had heal this fast, I do not have the crippling side effects of doxi, a lot of the issues with my steroids aren't terrible, and I really just dont feel all that sick. But here I am fighting numbers and being defined by them, which I have a feeling thats what life is about. Numbers.

Also Rubes the Cat has been getting a bit of treatment with the laser to, not as much as me, but her anxiety seems to be ok and her hair is growing back in. If you dont know she ripped out all of her hair when I got an iron infusion because I was sitting here on my bed fighting for air in my lungs. So all in all a good improvement.

Just a quick laser update for now,
Love Y'all
~Poppet 

Lungs

Someone in this house has been sick, and I called Superman who never got the message so I figured eh didn't need the meds, turns out he didn't get the message and I had a scheduled appointment anyways so I just waited to see him and even got my tattoo in a location my pants wouldn't bother it, thinking I was prepared. Then I got hit with my very harsh reality. Just because I what I consider OK, doesn't mean I am.

I felt well enough to get my tattoo, I even made plans for this weekend, but the reality living with this disease is my life isn't always what it seems. My numbers are bad, by bad means I have 2 more days to feel better or well for my numbers to improve and they havent budged, everything is low, my oxygen is on four, and im fighting to stay home. And at this point I am not sure if it'll happen, im an exhausted mess, I am on a ton of meds, and I am doing homeopathic work as well. Thats rights one does not out way the other, they both have an equal purpose in my life.

You guessed it my reality is I have a lung infection, my reality is its really hard to fight off this infection because of my immune system and alls I want to do is sit and cry, just stare at the screen and cry, but thats not a good option either. Its just so frustrating to know that I feel ok but the reality is deep inside of my body theres a war raging in my lungs and they are currently winning. I cant have this be my last major infection. I cant have this be my "we need new lungs" I just need everything to work out. But the reality all of this is out of my control. I am doing everything I need to be and should be doing. Thats all I can do.

I often will tell you CF isn't the worse thing that can happen to me, and I truly believe that, its people who dont listen to me, and dont act that are the worse thing. No I am not blaming this on anyone, its simply my body that can't fight off infection. Something as little as someone having a cold in the same proximity as me can cause all of this. What someones body can fight off mine can't. This is just the body I was giving. As much as we fight to keep my lungs under control, the progression of my disease is going to happen. No one wants to hear that but thats the unfortunate reality of my life. So we embrace it, we accept it, and we make the best of what we can.

But I guess its time for more coffee and to catch up on this Anime
Love Y'all
~Poppet 

Organ Donation

Its organ donation awareness month, and this is a subject very close to my heart for many reasons. I am the daughter of a transplant nurse. So growing up it was just something you did. Theres no "what?? people do that??" It was "we dont need organs in heaven someone her can keep them." At that age I was to young to comprehend what all this meant. I just new when you died someone else got your organs. As I gotten older, got diagnose with CF, and found out my harsh reality that it became so apparent why those magnetic were on our fridge. Someone was fighting to hold long enough to get that miracle of a second chance at life. Then I came to realize what a taboo subject this way.

People dont openly talk about death, we are so ready to praise the fact that someone is born but when it comes to the latter we are supposed to quiet about it. Leave it be. The its a sad heart wrenching subject its still very real and we need to express our concerns now. Does your family know you want to be one?? Do they know you are one?? Do you know myth vs facts?? Do you know why that little heart is on your drivers license??

When I was 27/28 we thought this it, we need to get listed, but we got a new meds and we bounced me back with a life expectancy of of 32. Based on my numbers thats would be limit my lungs could handle. We might need to talk about this all over again. Then I did what I needed to do, I got a living will, and power to attorney, and got things sorted. Wonder Woman asked if there was anything I wanted, I kinda look at her and was like I want to meet Steven Tyler, I have been in love with this man before I even know who Aerosmith was (a movie I saw them in) though that was an impossible feet for her, I told her I wanted a sleeve and we set to work, I knocked out my sleeve, I got a part lower arm one, and got tattooed with my BFF. As my lungs are steadily going down hill I asked for one last trip, thats all.

You see growing up with a nurse such as a transplant one, she never let me believe there was always tomorrow to get things done. We are in the here and the now. Thats it. We embrace today, we strive for things we want. As my lungs grow weaker and we are needing more PFTs the thought of what I want is so much more simple. I want to live. I want to survive this life and change this world like I always said I was going to do. Do I want to see the world?? Of course. But what I want more then anything is to live.

If more people were organ donors, if organ donors were just a common thing, we might just be able to see more people live. Its not a cure, its not even a fitx, its not a guarantee, but its chance that I can have a life. Its a chance that I can be a full time pup sitter for the best All Father in the entire world and I can travel and see who I want to and be with who I want to.

So often I ask, if it was your loved one struggling to fight off end stage disease, and watch them struggle, what would you do?? Would you be a donor?? Would you fight for them?? Would you spread awareness?? Thats we do, and I promised poison Ivey that she wouldn't live life with out me and thats something I work daily at. Surviving. Not living just surviving.

Please sign up to be a donor, its very simple. You can do it thru the DMV, and im sure donatelife.org has some information to.

Love Yall
~Poppet 

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