Update

With a marathon of deadliest catch and how sick I am brought me back to the time I was so sick I binged the show for 24 hours strait!! I had a tunneled lined put in was super sick and i watched this show. Its become a major part of my life since then and before then to, but thought it was ironic things lined up. You see I am not doing so good, i have a strain of bacteria growing in my lungs and I am very symptomatic though I am so use to this I don't feel as bad as I should.

With a possible admit in my future and the drugs not making me feel better, i figured id update the general mass cause this is easier then a bunch of messages.

I am really sick and had a bad few nights, and with the stress of everything my body keeps going into what i call mild allergic reactions (my skin almost looks burnt), others might see this as bit more serious but for us its up the benadryl and don't miss a dose. I had so much meds in me the other night I felt like i was over medicated and it was kicking my butt. Then the side effects of the antibiotic kicked in and I was so out of it i didnt think my body could take one more med. But i ended up getting up to take that med because i was in and out of sleep every 30 mins. Its been exhausting!!

Yesterday since I was right next to Wonder Woman's work when I went to get blood work done I stopped by to say hey to everyone and the longer I was off benadryl the reactions started to settle in with the stress of what my life has to offer. I was going to stop and get Rogue One for use to watch but my body was running out of energy very quickly and I knew Wonder Woman would understand. It was also nice to stop by and see everyone as I haven't been able to make it up to the campus to talk to the students about this hectic life, and I also probably won't make it to pinning this year as my lungs need the TLC.

We are keeping a close eye on everything and I had to take a step back with my yoga, and trying to keep up with a bit of Qi Gong but thats OK, I will knock out this infection in some way and get back on the proper road. 

Love Y'all

~Poppet 

Organ Donation

It is Organ Donation Awareness month, though my team fights daily my ultimate fate is very harsh. My family makes the best of every moment with me, and they always keep safe environments as not to progress my disease.

No one's life is a guarantee, my disease's just make that very evident. The thing is though a person with no history of any disease can contract and infection and possibly face my same fate. I have time to wrap my head around it, my warrior have time with me but for some this isn't the case.

My goal in life is to break the stigma of donations, there are so many Myth's surrounding this and I am not going go into detail on this blog about it, but the main on I hear is "they don't work as hard to keep you alive." SO not true. They only mention organ donation after they tried every single way to keep your loved one alive. And for some this is when people here about donations for the first time. There dealing with grief, and wondering what to do from here. I wouldn't want to wish this situation on anyone. So my question is simple. What can I do now, to make break the stigma on organ donation. What can I say to help you understand??

I will never, try to break religious beliefs, I respect them and also ask people respect mine. There are religions that state you can't donate at all, and in some religions even blood donation is taboo and I respect it.

At this point alls I can do is tell my story and pray that people listen to me. I pray when people speak of me and my disease they stress that me and people like will one day need a life saving organ. I pray that the people listen, listen with an open heart and mind.

Though I live with a terminal illness that has destroyed my heart and lungs, I am an organ donor, in my will it says I am an organ donor, and have talked to my loved one's about this. I grew up knowing this is what you do, you save anothers life in a final act of love. Even with a disease my mind has not changed, yes my lungs are crap, my hearts a mess, but i still have other organs.

Please take the time to research this and please sign up at Donate Life or in America at the DMV.

Love Y'all
~Poppet 

What a crazy day

Edit: This was not posted the same day I wrote this and I ended up at the car place what I will call it at this point, in Jammie's!! No really target Jammie pants, sports bra, t shirt and over sized jacket and my handy oxygen!! We get there and Wonder Woman asked if I'd love to come in and it's like well why not at this point. After all I did that day, to get things squared away, made all these phone calls, text messages, and everything else. I figured why not see this to the end!!

While were waiting to hear from Superman, I found out this morning my lungs still need a bit of TLC. I just asked Wonder Woman, when people call me to tell me whats going (just wait ill explain) can i ask them for a second tire then?? My lungs are just exhausted. I was actually talking between breaths more so then normal, and trying not to cough in anyones ears.

It was maybe 6 am if that, and Wonder Woman rushed in my room asking for keys, I was kinda confused, me and Rubes were curled up and I got up took my oxygen off so I didnt have the hassle of everything and followed her to make she got my keys and such. I heard the bell on my keys by the time I got down the hall. So she takes me out side to show me her tire. FLAT. To the rim flat. I asked her what needs to be done, and she told me nothing until tomorrow she has to work, and can't take the time to call today as we all know she's a Nurse. I asked her if she wanted me to call the place we always go to, with the super nice dude that eats smores chocolate bars. She confirmed left and went off to work. Since it was so early I went  back to bed with rubes, and i had to wait for places to open. So around 730ish I got up called the place, found they don't tow, texted the All Father, and Wonder Woman. Some how got all the info I needed, got everything sorted, ate breakfast (while I was on the phone with Wonder Woman at one point), did my treatment, called texted everyone back, and now waiting for tow truck. My entire morning was taking care of her truck, trying to text her, who wasn't readily available cause work comes first, and the All Father was busy to.

My lungs are SPENT, I can feel the stuff stick to my lungs, and I have the infection already, so I am just resting them until, i need to make ANOTHER phone call. I already talked to home health to so now it really is just a wait game. Thats perfectly fine with me, my poor lungs hurt and was already trying not to talk between breaths. It's ok though. One of those days I am thankfully I am chronically ill and most of my responsibility is this. Helping my family out while caring for my lungs. Yes my first priority is what I did. IV, meds, and treatment. (I ended up having to call the car place back, and I had to talk to 2 other people at this point, and when the tow guy got there I had to talk to him, all the while why trying to talk properly and not show my lungs are kicking my butt.)

I am not one to sit idle, why I became a Chef, and my family knows I like to be free so they take me on errands ands such to get me out of the house and assure me last minute trips I don't need perfect makeup and hair (stab to the soul right?? no i am kidding). Even when I worked I use to make phone calls for Wonder Woman as she never liked to do that and I am decent with it at my best. The All Father needs someone to sit with the animals and I am there watching whatever it is, reading and just enjoying the company of animals.

You see if I wasn't sick I would not be able to do what I do. I wouldn't be able to tell a friend to come over and get her makeup done, I wouldn't be able to help my family out, and I wouldn't be able to follow my hearts passion. I always tell people I will change the world. I have NO idea how but I will do just that!!

But I am off to make yet another phone call,
Love Y'all
~Poppet

Set back or infection??

A lot my plans this weekend were altered!! Like last minute, I had made plans on Thursday for the weekend with my family and I got a call that evening that I needed to go in for a chest x-ray and sputum samples. Which turned Wonder Woman into nurse mode and my freedom to drive was temporary pulled because I cough until i am dizzy. So I am texting the All Father, Poison Ivey, and her love (i am not calling you dead pool though I am sure thats your name in my phone.) Hey probably have a lung infection or a major set back I am not allowed to drive all weekend cause I need meds that make me really tired. I can't skip a dose of benadryl or zofran at this point. They all told me hey we will come to you don't worry about it!! This is why i love my family. 

Life with any chronic illness not just mine can be completely unpredictable. It leaves you cancelling your plans, altering your plans, or working through whatever it is your disease does to you. Mine?? Means I sit down to brush my teeth some days while laying my head on the sink. Or taking a luke warm shower with the door open so I can breathe and see the people that love me. Life in general can throw a wrench in your plans, but when you battle your own body it seems like its a lot more frequent. I wish I had more advice other then "go with the flow" but thats really what we do. It's also my family working as a team to do what I need. It's Wonder Woman walking through the grocery store because I am THAT predictable and me just keeping up. It's the All Father popping over to hang with me and the kitten. It's Poison Ivey selling shirts so I can focus on OK I need to go and take care of myself and not worrying about the cost.

My lungs are currently kicking my butt and my heart rate is pretty high so I am gonna keep this one pretty short because I need to go take care of these for the second time in 2 hours. Yes this is how my entire week will be.

Love Y'all

~Poppet 

Go with the flow

Its been pretty busy around here lately and with my lungs doing whatever it is that these lungs do life happens with or with out me. Plans change at the very last minute and I have had to once again push back seeing a friend from the other side of the country.

I often feel like I have appointment after appointment, and if I am not trying to get sorted to go to one of those with reminds do i have a tank filled?? Probably not. My health makes last minute cancellations a part of my life.

Lets take yesterday for example, I was getting ready because I needed to do a few things and felt well I was out and I was at my baseline we could stop an extra place or to. Well I came out of my room makeup half done to find it was snowing!! We call that "admit" weather. So pizza was a no go, ulta was a no go, and getting gas to see my friend was a no go. It looked like a med run was my only option and Wonder Woman's way of making this better was a trip to Starbucks where people know me and prayed we can park in front of the door, and then we of course got my meds. It also worked out the stuff I needed at Ulta was at the pharmacy!! So it worked out minus yummy safe food.

This happens a LOT at my stage of lung disease but you know what, even "normal" (read healthy people) have days like this. Nothing goes right and plans needs to be canceled. Yeah I am just as shocked as y'all are. I have learned not to be disappointed that there are days I can't do what I want to and things will work themselves out for the better. Sometimes you may not know right away other times those little miracles just pop up right away and say "here I am!!"

A week ago I woke up to a text and it sounded like my friend was frazzled and she was going to make Wonder Woman's appointment work but we assured her to take the day off and we would figure it out. The day before I was wondering how I was going to make a busy week work while keeping my lungs going because something I have scheduled just aren't skippable and I am dependent on the universe to guide the way!!

Yes, sometimes cancelled plans, altered plans, or a bump in the road can get quite frustrating, it really is just a part of our daily lives. The key is stop and thank the universe for whatever it is setting us up for or protecting us from. Take 5 minutes of your day to pout it out and then revamp your day, we have learned that its just a part of this hectic life we lead.

Love Y'all
~Poppet 

Update

I had the chance to catch up with All Father so we could learn how to do Qi Gong with limited lung movement, and how to pray properly. My spiritual life is just as important as my physical life and the two combined together is quite freeing. I am so blessed I have him to help me out. Well our day turned into an adventure. Frigga's car wouldn't start which lead to us finding a safe bar to eat, which led to a trip to a dealership to find out we both go to the same cardiac office, to my second home where I found safe ramen noodles, got a bracelet made for Wonder Woman and then found another safe meal. I came home to find out my favorite show has a release date and a game that had an error in it was fixed and not only was I giving an extra day for the quest, i was giving the "hats" for that day. Things that make me smile. No really thats what I called a good day. 

Those this wasn't a cut and dry day, a lot of it was last minute I was so blessed they took the time to spend with me. To love me. To find me food that is safe to eat. I also got Wonder Woman a new bracelet. The health side of this. Lungs half worked, and I have been dealing with a constant dysthymia's by constant it can go on and off all day long. To the point I just feel so week, and that my heart feels week and mixed with poor lung function its just draining. It got to the point yesterday I called her at work. I just need the relief which we can't give me, and heat on my chest made me feel like I was just going to pass out and almost did picking the Rubes. Finally last night Wonder Woman goes you might be going in and out of A-Fib. Which has been thrown around before and she also mentioned SVT, which I have a history of and so much has been threatened and she assured me all was going to be OK and we will make to the next appointment like always we will fight and make it thru cause thats what we do. 

I can't explain those well, however a fib the atrium of the heart beating faster then the lower part and SVT is just a super fast heart rhythm which I have. With everything else wrong with my heart I was just a bit frustrated. My social life takes a pause so I can care my life. We literally pause everything that goes on in my life to spend all day doing meds, mediation, qi gong, some yoga poses, oils, and just plain out resting. All this combined together usually alleviates a lot of symptoms I have but it never actually makes me better. Its all about balancing. It like walking a tight rope, one shift in weight and everything comes tumbling down you pray you fall into a safety net of meds and not to the floor where things just go haywire. 

The thing with this disease is we don't do treatments to make it to tomorrow, we do treatments to make it to the next treatment. We try to make it to the next round of PT, to the next inhaler, to the next time I can take a pill. You put all this hard work in not to get better but to stay stable and know in the back of your mind that with everything you do your lungs are still going to fail and your heart could fail to. If you don't do your meds you dont have any sense of hope. So we fight everyday, we pray every day, and we do treatment everyday. I am so thankful I have such a support system and I am so thankful I treatment. 

Love Y'all

~Poppet 

hope

Me and Poison Ivy have been working on a few things lately and I was going thru all my photos in the last year or so specifically hospital photos or photos that are just a representation of my life with CF. I saw pain, I saw some tears here and there, but most importantly I saw hope. I saw people who have rallied around me to support me in my journey to dry my tears or bring a smile to my day. They represent my journey, each and every hug, word of encouragement and taking me out to enjoy life inspire of the nonsense I go thru.

I know my life effects people, I see the tears that are shed, the sadness in peoples eyes, and even people I never met but I am close with expressing their sorrow. Yes there is sadness in my life, I saw picks from when I was celebrating the life of a dear friend who lost her battle to lung disease, but she was such an inspiring person and she was my second mom, so of course I saw sadness there. It really is OK to be sad, but we can't let that sadness overwhelm us or conquer us.

A part of dealing with a chronic illness or a terminal illness is a grieving process. You are 100% allowed to be upset. Though there comes a point where we have to accept our lives for what they are, what can we do with what we have?? Our you gonna let your disease stop you?? Are you going to over come and fight?? Do you have a support group?? There are many questions that can go into this but my over all answer is simple, life does go on and we have to find ways to ok. We all have ways to cope and I encourage healthy ones. Life is not about what happens to you but how you react to it.

I have cried, and I have fought but I can not ever give up. I have to find hope in tomorrow. I do find hope in tomorrow. My life isn't always ideal but it is my life and I will make the best of it. I choose to collect coloring book, tattoos and makeup. I choose to cook, and I choose to find the joy in life. Its not always easy. Some times I have to sit down and explain to myself "girl you are stronger then this get it together."

What I am trying to say is wake up every day and be thankful for the small things. Today I woke up and I had a cut curled under my arm, I got up and Wonder Woman was there with coffee for me and treats for Kitten. Joy. I did treatment and took my new med that I hate but thankful I have it. Joy. Poison Ivy and her love decided to start a new campaign for me. Joy. I woke up to a text of Harley greeting the lady at doggy day care. Joy.

There is hope and there is love in this world and I encourage you to look for it, even if its a heart breaking situation, no there is joy. No there is always hope in tomorrow and if you need someone to understand and just "get it" I am always here and on tumblr under the same name.

Love Y'all
~Poppet