Since tomorrow is rare disease awareness day and my lungs are super uncomfy since we are trying to clear them I figured I'd update this blog about both of rare diseases. Most people see it as "just as a disease." Its so much more then just taking meds, and fighting insurance companies.
CF is a rare disease that affects every aspect of the body, its not just a lung disease, its a genetic mutation that alter the chloride/sodium channels in the body. On top that I have mast cell disease which triggers my POTS and multiple allergies. You can easily google what this disease is, so I am going to explain what its like being in my life and what you normally do not see when you google my disease.
Every morning before I even get my lovely cup of nice warm coffee I have to start an IV, start a nebulizer and put on a vest that rattles my chest to move the mucus. Take a handful of pills and an inhaler so I can get to the point of eating. Since I have been asleep and laying down most of the night, or propped up my secretions has settled and thought I have oxygen blowing thru my nose, my lungs are stiff, and I am coughing and trying to clear them. Sometimes if I am up and down all night this part of my day is a bit easier. I give Wonder Woman the 3 finger salute (hunger games) before she leaves for work and she sees that I am going to be OK for the time being. So I can do meds, eat breakfast, and do more air way clearance thru out the rest of my day.
Sometimes when breathings gets much harder I add some Benadryl and prednisone into this mix. Though my lungs are getting increasingly gross, its getting harder to eat, and my weight is showing just that. On doxi, for some reason I have to eat more freqeutntly and I do not get the luxury of microwave food so I am in the kitchen a lot.
Some days Wonder Woman comes home to early to help with my health, she even sits and watches my breathing patterns to see when and how we need to treat, whats the next step in plan?? She gets me talking so she can see if I am focused on my breathing and talk between breaths or if I am forming proper sentences. She checks on me in the night to make sure I am still breathing, and how close Rubes the cat is to monitor me herself. If the power goes off, she's out of bed to swap me over to a tank before I get the chance to realize whats going on. Some days things seem so grim she cries by my bed because of how heart breaking it is to watch me struggle and fight.
To make things more complicated I am allergic to so much, we recently had to swap vegan milks again. I made an off mark in a contemplative way that Coconut is higher in cals then soy milk, which she informs this is a good (Wonder Woman that its) get some meat on my bones. We have to watch every food that I eat, is it safe?? What has it touched?? Who has touched it?? Benadryl is never enough for these reactions and since my heart is bad guess where we have to go?? Yep thats right.
Nothing more heart breaken then 2 worried parents that your close with, and the tears in their eyes.
But you know what else all this is?? A joy for life, a recognition that life is short and its meant to be enjoyed. Its getting to do what I love, because my focus is my health and while I am sitting here clearing my lungs I can be doing this and working on my cookbook. I have parents who are willing to hold my hand and tell my I got this. I have people that chose me over and over again and I am so thankful for that. I am thankful for the sleepless nights because in those moments I not only found out who loved me, but what I loved to do. I found a love for makeup, a passion for recipes, and true friends that will love in spite of a genetic disease and an allergic disease.
If you can learn one thing from its this: Follow your dreams, do what you love, its never to late to start and love so purely and unconditionally that no one will ever question it.
Love Y'all
~Poppet
CF is a rare disease that affects every aspect of the body, its not just a lung disease, its a genetic mutation that alter the chloride/sodium channels in the body. On top that I have mast cell disease which triggers my POTS and multiple allergies. You can easily google what this disease is, so I am going to explain what its like being in my life and what you normally do not see when you google my disease.
Every morning before I even get my lovely cup of nice warm coffee I have to start an IV, start a nebulizer and put on a vest that rattles my chest to move the mucus. Take a handful of pills and an inhaler so I can get to the point of eating. Since I have been asleep and laying down most of the night, or propped up my secretions has settled and thought I have oxygen blowing thru my nose, my lungs are stiff, and I am coughing and trying to clear them. Sometimes if I am up and down all night this part of my day is a bit easier. I give Wonder Woman the 3 finger salute (hunger games) before she leaves for work and she sees that I am going to be OK for the time being. So I can do meds, eat breakfast, and do more air way clearance thru out the rest of my day.
Sometimes when breathings gets much harder I add some Benadryl and prednisone into this mix. Though my lungs are getting increasingly gross, its getting harder to eat, and my weight is showing just that. On doxi, for some reason I have to eat more freqeutntly and I do not get the luxury of microwave food so I am in the kitchen a lot.
Some days Wonder Woman comes home to early to help with my health, she even sits and watches my breathing patterns to see when and how we need to treat, whats the next step in plan?? She gets me talking so she can see if I am focused on my breathing and talk between breaths or if I am forming proper sentences. She checks on me in the night to make sure I am still breathing, and how close Rubes the cat is to monitor me herself. If the power goes off, she's out of bed to swap me over to a tank before I get the chance to realize whats going on. Some days things seem so grim she cries by my bed because of how heart breaking it is to watch me struggle and fight.
To make things more complicated I am allergic to so much, we recently had to swap vegan milks again. I made an off mark in a contemplative way that Coconut is higher in cals then soy milk, which she informs this is a good (Wonder Woman that its) get some meat on my bones. We have to watch every food that I eat, is it safe?? What has it touched?? Who has touched it?? Benadryl is never enough for these reactions and since my heart is bad guess where we have to go?? Yep thats right.
Nothing more heart breaken then 2 worried parents that your close with, and the tears in their eyes.
But you know what else all this is?? A joy for life, a recognition that life is short and its meant to be enjoyed. Its getting to do what I love, because my focus is my health and while I am sitting here clearing my lungs I can be doing this and working on my cookbook. I have parents who are willing to hold my hand and tell my I got this. I have people that chose me over and over again and I am so thankful for that. I am thankful for the sleepless nights because in those moments I not only found out who loved me, but what I loved to do. I found a love for makeup, a passion for recipes, and true friends that will love in spite of a genetic disease and an allergic disease.
If you can learn one thing from its this: Follow your dreams, do what you love, its never to late to start and love so purely and unconditionally that no one will ever question it.
Love Y'all
~Poppet
No comments:
Post a Comment