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