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