4th

Holidays of any sort are always interesting when you are chronically ill, or have food allergies for that matter. Everything can be so uncertain. Of course you do everything within your power to protect yourself and sometimes you just have to politely decline an invitation here and there.

I was sure this 4th I was doing nothing, Cook Outs can be questionable for me, I can't do fireworks and was planning to lay low until the All Father texted me to come over. Why yes of course :-D.  The special thing about the All Father and Frigga is, the always make sure I am safe even when they have a group of people over. They understand every aspect of my health, and Frigga is brilliant at finding safe foods for me to eat. I am always blessed that they find people willing to under stand my health issues and make the atmosphere safe for me.

Holidays are not always easy, in fact most times they are quite difficult. I have had people tell me to my face it doesn't matter if I come or not I can't eat what they eat anyways. I had people open things in front of me with no care and this not just a me thing its a people like me thing. Some days you just gotta be assertive and kindly explain you are so much more then your disease. Its also OK to distant yourself from these people. You do NOT have to be around people who make you constantly worry about your disease or your food allergies. Or whatever is wrong with you.

The people that alter things for you, they love you. They do not do it because they have to, they do it because they want you around and they are wiling to make an adjustment to their plans or menu so you can be with them safely. They do not want to see you sick or hurt. I know how hard it is not to feel guilty that someone make whats seems like a huge alteration to their plans. Or like the All Father, he comes and gets me for long days so I can take meds that make me tired and loopy. So Wonder Woman isn't worrying constantly, and I can enjoy the day with out the worry of being sick or getting home before meds kick in.

I have walked all my loved ones thru what needs to be done to keep me safe and cool and they are always willing to make adjustments for me, and the ones who aren't?? I had to learn to either try and be patient and teach them the seriousness of what my health brings or just distance myself from situations all together which is OK to.

Don't be afraid to cancel a plan because you are not comfortable being in a situation.

Love Y'all
~Poppet 

Summer

Its summer!! And you know what that means?? Bye Bye lung function. Though that does sound like I am "whatever" about it, I really am not. We are just use to it, the decline comes in the summer which is why we don't usually do PFTs in the summer as it makes me breathing a LOT worse. But I am so thankful for my parents that makes my life so much easier and give me that quality of life that I truly feel some days I have lost.

This past week I have all but lost my voice and I was fighting to keep an infection out of my lungs. I have started sleeping with my oils and salt lamp. We are currently doing the Theives oil to help fight whatever infection my lungs are trying not to get. On top of that I have breathe on my chest and doing several treatments a day. Yes thats right midday treatments. Flutters, vest, and manual PT as needed. I am so blessed to have my safe house away from home so when I need to get out I can just relax at another house. Or the All Father picks me up and we go for a little drive in an AC truck and we visit little places.

Life gets so complicated in the summer, its a constant fight. Its to hot in the den, someone messes with AC in the sunroom at night so when I get up I have to turn it down, which isn't an issue really, just turn it down, make coffee, and then treatment. Its sitting in front of a glass door for some sun while the AC blows on me. I don't open the door because then Rubes thinks she's brave and we can't have her outside. She actually sitting here staring me down.

Set backs now a days scare me a bit as I can't have my lung function drop to far down, because then we will have the fight of getting on transplant list a lot sooner then the predicted date. We don't want that, we want to keep these lungs as long as possible. Yes it is inconvenient toting around a tank on top of all the things I need (like meds). But this is my life, this is the life that I have fought so hard for and I am not going to stop now. We also have some major appointments coming to see what if anything we can do for my heart. We all pray, including Dr A, that we can still treat my heart as naturally as possible. This is what I will fight for as well.

My summer is spent binge watching shows, while doing treatment, or some non stressful form of exercise. Yes thats right, even with my lungs being quite vocal lately (no really you can hear my breaths some times) I am still required to do what I have to so I can breathe a bit easier.

Thought I think Rubes wants some dinner in the most passive quiet way possible, so I must keep the poor things bowl more then half full or she does the classic kitty "please fill my bowl."

Love Y'all
~Poppet

30

Not long after I turned 29 I found out we were probably going to start the transplant journey, my lung function is low, my peak flows are low, and sometimes my oxygen is high. With a lot of fighting, a lot of work, and one good luck tattoo later come January I found out we could push it off some. The amount of work and time that has gone into it is well worth it. I was able to spend this last year surrounded by people I love. I got to spend it doing the things I love. I also spent with a dedicated couple hours a few times day (my days are basically taking care of my lungs) to exercises, chest PT and breathing treatments.

Life is not clear cut, and no one knows where its going to take them. I have spent my entire 20s fighting for my life. Now I am going to spend my 30s fighting off lung transplant, and fighting for lung transplant. Funny how that works right?? My doctor predicted maybe MAYBE 3 years left with my lungs. Is quite a sobering reality. I really had to stop and center myself. What do I want out of life?? Who is in my life?? Are they going to help better myself?? Do people drain me?? What exactly do I want out of this life?? These are all thoughts you have hearing this. No one wants to hear any of this especially someone my age. But the thing is, we made it to 30, we have been working on my sleeve, and I have the best spiritual guides a girl could ask for.

Thats what the end of my 20s became, lets knock some things off my bucket list, to come to conclusion I really didn't have one. Being raised by Wonder Woman, I never had the belief that our job in life is to grow old and have family. It was to love, and do what your heart desires, so you have the quality of life while you can. That is exactly what we do. So I asked Wonder Woman for a sleeve (tattoo) and to help me meet Steven Tyler and Johnny Depp. And of course Christian Kane. So she did the only thing within her power. Help me get my sleeve. Help me embrace my Steven Tyler fashion, and encourage me to become the makeup artist I want to be when I am able.

So yes, we had worse case scenario going into this year. But we made it the best that we could. We rocked every thing we could, and we made the most of every single moment that we could. Why?? Because that is what you do in life. You don't stop and say "well there is always tomorrow." No. you ask "what can we do today to make this a reality," And thats what we do, and what I encourage you to do.

And since I have salty air lungs (thinned secretions) I am gonna do what any CFer should do. Take advantage of it and clear these lungs so I have more tomorrows.

Love Y'all
~Poppet

Tis the season of heat!! Also tis the season for me to "quarantined" because my poor body can't handle the heat. So me and Wonder Woman were trying to get things sorted in my room, and we are now on plan C, and happy to get things sorted in my room. Two people with OCD, and with strong personalities always make working together interesting. So no major computer in my room for the summer, but that truly is OK. I have books, coloring books, and the works to keep me entertained!!

When you are basically trapped indoors because your body can not handle the intense heat, you have to become creative with things to keep occupied and entertained. Yes a lot of my time is spent caring for my lungs, but those moments where you sit and our still you need something to do. I refuse to let myself be bored because then my mind wonders. I can easily get wrapped up on a bad day about how unfair my life is. I can't just go out and enjoy the beach like an average person or an amusement park. I am stuck inside with my IVs and oxygen. Yes it does seem unfair. Some days I constantly remind myself this is exactly where I need to be in life, Fun?? Not always. Fair?? Not even close. But this is my life and I have to make the best of it. Somedays its easy, somedays I am on so much Benadryl I just do not care, and other days its tough.

I am constantly reminded its going to get much worse from here. Which I get it, but if I can't cope now how will I cope then?? So I make the best of it. The last few days my chest has been a bit to tight for comfort so my free time has been spent doing relief meds, and draining the lungs as best as I can. I mediate which allows me to focus on my breathing and center myself, and I do several forms of Chest PT. In those moments of silence, its a must for me to stay busy. What do I do??

Well for one I cook. I have to eat, and I have to cook every meal so at times I dedicate a longer frame of time to focus on my one true passion in life. I love to cook and invent new things. I love to do my makeup and just in front of the mirror and design new things that can be pretty out there but still me. I love coloring and have a stack of books I spend my time with. I organize drawers when my body allows it and other times I just watch a movie and be still.

I have told the All Father several times. I do not know where my road is going to lead but I do know at this very moment of time I am where I need to be. I am on a spiritual journey that I am so blessed for him and Frigga to guide me thru, and I am in a position where I can dedicate my time to this. He has encouraged me to start an actual website and put all this out in the public. Maybe my Jon is to guide someone thru this when they our just as lost as I sometimes feel. You know how right he is??

This is my advice to you, on a day where am I just frustrated with my lungs because its not even summer yet and my lungs are already getting beat down, and I couldn't sit thru what I'd call an easy tattoo. More of a location then pain thing. It cleared these lungs a bit. However, my point. Do what you love!! So it may take you 3 days to finish a coloring page?? Thats OK. Color, Do you like video games?? Play them!! Play until your wrist hurt, I am guilty of it. If you can sit in the sun, enjoy the day, and enjoy whatever it is your heart and soul loves to do.

Me?? Well today Wonder Woman tried to get a computer in my room, it doesn't work, but my room is now organized and I have plenty of room on my desk to do eleaborate makeup. I also have gluten free pasta and fresh veggies to make a nice dinner.

If you ever need someone to just listen and understand the share frustration of life I am here, just private message and I will get back to you.

Love Yall
~Poppet

Reality

Somedays the brutal reality of my disease is very evident. I am turning 30, and I was planning some stuff with Wonder Woman but a weekend trip could not justify all the amount of stuff we had to carry. To take with just for me survive over night let alone a weekend. We of course went back to the drawing board as we alway do. Then today I was looking for an epic Steven Tyler tattoo idea because well the one band outside of KISS that has been a constant in my life is Aerosmith. One the first bands I have ever listened to, and one of my go to's when I am in a funk with this health. Treatment?? Rainy Day?? Little bit of Steven Tyler's "I Make My Own Sunshine." Always seems to brighten things up. Or Dream On to remind to fight for my dreams. Then I saw this could be the farewell tour. My heart sank. It seems trivial to most, but I do not go a day with out my music. Let own Aerosmith?? The reality that I won't be able to see him concert one last time was real, well not Aersosmith that is. And the sudden brutal reality of how sick my lungs are really hit me. To sick to do much, but still make the best of things, but to healthy for transplant list.

Which do not get me wrong, the longer I work to keep these lungs, the longer I live. Yet, some days I am heart broken by my reality?? Why?? Because I am human, I cry, I get upset, and I get frustrated. Growing up concerts were my happy place, I went with friends, I traveled with Wonder Woman, and I made so many great memories. Sometimes know I can't do this, or the risk out way the odds, its saddening. I get sad. Usually it doesn't last long because I plot the way to make things work. I usually work things out somehow.

I also want people to know, its OK to be sad about things you can't do because your chronically ill. You are allowed to be sad, you are allowed to break down, and you are allowed to be angry. You are allowed to have negative feelings about your health, about your disease, about your life. Why?? Not only our we human, but its about the come back. The drive to push you forward and fight that much harder. I tell you theres not a day I don't fight for my health, or the right to breathe. Some days I fight to "center my zen." And today or this week has been one of those moments. My life can get quite brutal with hospitals and doctors. Telling the All Father "sorry not today I had a bad night." Which the people that love you always understand. They understand your frustration and anger. They also hold your hand and say "its OK, another day we will make this work I love you." And thats what I want you to know. That another day you can make it work. Another day I can make it work. In those bad days, in those bad moments, dream. Dream big, and hold on to hope because you never know what is around the corner.

Love Y'all
~Poppet

Food Allergy Awareness

Things have been quite busy lately!! I have been getting Wonder Woman ready for pinning, which I was unable to make this year for many reason but it all boils down to my lungs. I have been spending time between my parents, and of course doctors appointments. Then Momma's Day celebrations that we can't do on the exact day. Which lead us into Food Allergy Week!!  The start of Food Allergy week I hopped in the shower and thought nothing of my poor breathing I mean it comes with showering. I looked in the mirror and hives!! No idea why but it was just hives from what I know and seemed to have been ok.

Food Allergies can make things super complicated, and on top of them I have a specific diet with my POTS, and of course my CF diet. So its a constant balance of keeping things even. I am personally very limited to what I can eat and gaining weight is almost impossible or so it seems. So to maintain a proper weight, I have to eat a lot, which some people hound me on. They don't realize its crucial I eat 5-10,000 cals a day and when you don't eat meat this can be a hard number to reach. Most of the food I eat is natural, organic, and not processed.

I don't know if you ever looked on the back of packaging for allergy warnings, but this does come into play. So that cuts out half the stuff we would think is safe, if something has been cross contaminated (my food has touched something I am allergic to) things can and have ended very badly. "May Contain" usually means the the allergen at hand is present in the food. Some people can eat this and trust that the factory does a good job cleaning. I do not see it worth the risk. I can make a pop tart, I can make a cake, I can eve make cookies. No food is ever worth the risk of your life. I had one incident almost cost me mine, and Wonder Woman had to watch it start to finish. Me cook my food in my pan I thought was safe, to eating it, reacting, and nursing and doctors working on me all at once. The only thing I remember is her crying in the corner.

This is why we take everything so seriously, it is a matter of life and death. Its also a matter of us finding a healthy balance to keep my weight stable to keep my lungs in check. All my diseases some how work together in harmony or well all going wrong at the same time. When one is trigger, the next one is triggered, and its a down hill spiral. Which is why we all work together as a team to figure out what is healthy, what is safe, and what is just off limits.

Food Allergies can seem high maintenance but when we work together as a team, we all stop to read ingredients, we all stop to make sure things our handled properly, we can all work in harmony. And rock that Teal for food allergies and the purple for CF. All cures, or preventions start with awareness. Take the time to listen, take the time to research, and after you research always ask the person how they treat their allergies and fact check whatever it is you saw on the net. Cause lets be real the internet can be quite shady sometimes.

Love Yall
~Poppet 

CF Awareness

Its Cystic Fibrosis awareness month, and after a few days in the hospital, and a visit with cardio and pulm, we found out I never had true asthma and its all just CF. So we might treat my heart at this stage we might not we just have to wait and see. Theres a lot more going into my heart then what I have posted but its all a matter of "we'll see" so I am not going to go to in depth with that now until I have more information my self. But Cardio will tell you I am tough and I know how to survive.

CF is more then just lung disease, it affects every part of my body, my pancreas, my intestines, my heart, my skin, and my cells. Every cell in my body is affected by this disease, the sodium and chloride do not shift properly and cause the thick mucus build up. I personally am not a diabetic yet, I am on the low end of that spectrum. So I am constantly watching my diet, we always have complex carbs on hand to keep my sugar at an even keel and we have a lot of salt on hand at all times.

It doesn't only affect my body, it affects my life in every single way. I was recently in cardio, and the nurse asked why are you on oxygen you are so young. I explain my lung function, and I have CF, i was born this way and so on. "But you look healthy." No its makeup but thank you. I go to Pulm, "is that right only 85??" Yes mam, i have CF its hard to gain weight. People look at my image and assume I am healthy, they don't understand the amount of work that goes into what I do. They do not see the amount of food I eat, they do not see Wonder Woman buying me oatmeal cause I am craving and buying a hi cal vegan milk to get with it to add on the calories. They don't see the All Father and Frigga buying me safe high protein snack to eat while I am with one of them as not to lose weight. Its have a full conversation with Wonder Woman thru coughing.

Theres so many meds involved when it comes to my life, and i am at the lower end of the spectrum, i take a hand full of pills a couple times a day, and I take pills every time I eat. I am constantly balancing neb treatments, with pills, with vest, with manual PT, and the exercise requirements. I am constantly finding ways to literally drain my lungs, while Wonder Woman is at work so i can loosen up my air ways. Its rubbing Breathe oil on my chest that Frigga stocks me up on so I don't feel breathless and dizzy using my flutter. Its lukewarm showers as not to irritate my lungs, and spending the next hour coughing and catching my breath. Its Wonder Woman checking on me in my sleep to make sure I am still breathing properly.

There is so much that goes into my disease, but one thing I can assure you, I am where I need to be in life. I am exactly where I am supposed to be. My health has taught how to treasure the moments I spent with my family, to love people for who they are and to look past the non sense in life. I am not CF, I am not POTS, or Food Allergies. I am a Chef, a Makeup Artist, a daughter, and a friend. I am the free spirited teal haired, wonderland obsessed girl who believes there is truly good in this world. My goal in life is to break the stigma that I am my disease and my disease defines me. I am just an average woman trying to have a successful life like most people do.

Love Y'all
~Poppet