I just got back from a short beach visit (as I am sure you can tell by my last post). I am sitting here cooling off, its very hot here and my diseases do not like it. I am off my oxygen again. Downing what seems like way to much water, and throwing chocolate chips back like they are shots, and munching on pretzels.

A few people have stopped me while I am here, asking about my IV. I have explained it to them with a smile. As most people do not know what my diseases are. Many times thru language barriers. But they truly care and ask if I am ok. Espically the one's that are not from America. But most people here are nice. The lady who was cleaning today point at my IV and asked about it. Thru a language barrier she understood and told me she'd pray for me and to never give up. I promised I would not. I had point at my lungs and told her it helps me breathe. That is true compassion, she does not know me at all. She just saw the weird girl sitting on the sink doing her makeup with tubes connected.

I spent the morning at the pool reading, and laughing at the sites I saw. At times sending Sif messages showing her the pics behind the stories. Wonder Woman hung out with me during lunch and ate pretzels with me, drank some coffee, and I BEGGED her to let me go the beach. Well I did yesterday, she saw how much I needed to go there, she knows my soul is linked there cause hers is to. So she said after my last liter you can go. So what do I do, put my pole in a chair sit as low I can to make it run. It ends "crap a breathing treatment" haahah i finally made it to the beach!! YES!!! OH MY GOSH it put my home beach to shame. Such a gorgeous clean beach. And I truly got to enjoy it. I got to feel the sand in my toes, that was burning me but I got to sit there in the sand. I had found went sand to sit in so it was a lot cooler and I took it all. The true beauty. The true meaning of life. How beautiful it is we just have to find what makes us see it. I put on my oxygen and just sat there. There is nothing more beautiful then sitting on the sand and hearing the crashing waves. Well one thing is but different story different day.

When I was just sitting on the beach I had quite a few people stop and stare at me. I am truly happy just sitting on the overly hot heat taking in life. They don't seem to get it but thats OK. What other people think of me does not really matter. I am OK with being the odd girl smiling stupidly at the crashing waves. Laying a chair with my nose in a book. Or just sitting down stairs stabilizing while people look at me. IVs, Oxygen, nebs, are all a part of my daily life. To sit on the beach and relax or by the pool, truly makes all that "crap" worth it.

But I guess I best get off here, I am in the middle of a good book.
Love Yall
~Poppet

As I sit here on the beach, i truly realize a few things. Life is truly beautiful, CF and POTS is also away of life. I see how people look at me. Pity the girl, but what they dont understand is there is no better way to spend time out of the house, sharing this expeirence with you. I have the sun warming my skin, wind ruffling my air, the sound of waves crashing the beach and saegulls singing. We are all happy contwnt and most worry free. Gorgeous blue sky and a few clouds. I need to walk back and get out of tbis sun but i wanted to share the beach with you.

It has been a long day, and really how do you get mucomist on your laptop?!?! Anyways,  I was up extremely early. And traveled all day!! Thankful I live with Grandma so there is someone to watch my sweet kittie girl. Not even half way here "i miss my girl" lol...

Traveling with me is a pain in the butt. I was not connected to my IV all day today, which is not good. My lungs are paying the price though I am running it now. My lungs were stiff, I was short of breath, when I got out of the car I was short of breath on oxygen. I was so ready for PT and a breathing treatment, we were getting the stuff out of the car. Wonder woman can i please go up to the room and grab a treatment?? I was asking for a treatment?? I avoid them, put them off, push them off as late as possible. Today I needed them, I even used an inhaler in the truck to hold me over. And I think I ate a stalk of celery. Sitting here ate a half can of almonds to lol. The good thing of traveling with me?? Very few breaks. All worth it

But I went to sit by a gorgeous pool, sent way to many pics (I am still sorry), and cooled off. Well I had to get all cute and make an apperance as a guest. I am here with a university, Wonder Woman is working and I am taking advantage of pull time, or sitting inside, the works. And I had to bow out gracefully before my allergies flared up. I am so nervous around people because I can't handle smells. I am like Wonder Woman, my lungs hurt, I don't want to use my oxygen, FINE!! Yep she always wins those arguments. lol I really do hate wearing it sometimes. I hate explaining why I look healthy when I really am not.

But it was really nice spending the evening by the pool relaxing, it's not something I ever get to do. I am sure I was sight sitting there with the IV, taking selfies lol, I also had my oxygen around me somewhere, and a purse filled with food haha. But I am exhausted.

Love yall
~Poppet

I should be organizing and cleaning for my trip, but I am doing my nails like a typical girl lol. I got these sticker nail polish things that are asthma friendly and look pretty. Saves me sometime not letting it dry. I am sure this a first world problem however it does not bother me. But on to more important things.

I had PFT testing today, and I am not so confident that its good, but I am pretty confident its not severe damage. knock on wood right?? lol My RT was such a sweet person and recomended me getting into smoothies for nutrition. I am like hmmm, if I get a Ninja or a Bullet (whatever Wonder Woman wants) it can also act as a food processor, which in turn can grind herbs for me. So OK!! I think she learned some from me to today. That sometimes patient appear attypically. Which is one of my major fights in the medical world. Not all patients appear as stated in textbooks. I have a non text book diagnosis of my one lung disease. But that is OK, people like her listen!! And that is what I love about my team. They listen. I wish more medical professionals listened the way she does. I had one time I went to the ER, wasn't breathing, normal Sats tho, so the nurse refused to treat me. Wonder Woman corrected that of course. But it is scary to think about other people who do not have a Wonder Woman by there side. I sometimes complain about having a nurse in their like I do. Like today "put your oxygen on and put it on now, you will not be OK, you had no treatments today..." But... FINE!! lol Most days I am extremely thankful and feel truly blessed, just not when I don't want to listen when I should. Nurse trumps patient... Really though you can NOT argue with a GOOD nurse. Doctors even the good one's you can get sometimes get your way. 

I also had bone density this week, and my Radio Tech (also RT lol) looked at my arms, and at me, and goes they tell a story don't they (speaking of my tattoos). I said yes, a deep one, and explained my battle with my lungs, my heart, how I can't do as much as even though I try like hell. Which is what my fairy does represent. Sometimes you gotta take a leap and pray it all work out. Which most times it does. Wonderland is my escape and can mimic the stages you go thru with your diseases, but at the end you to believe in the impossible and then make it happen. I am doing things I never thought were possible. It made me happy for someone to look at me, and go you have a story and I can tell, btw you have beautiful work. Espically in a world where people go "your chronically ill how dare you" really?? seriously?? watch me!! lol

Once again Wonder Woman is on top of me to get stuff done, as if she KNEW I was on the computer listen to music :-) Some days you just need songs on repeat to make you smile.

Love
~Poppet

Traveling with the chronically ill.

I know we have all packed for a trip and thought "Oh crap!! Do I have everything??" Theres a whole new level to this when you can't find the closest wal-mart and pick up what you need. Yes, we need more then stuff we can pick up from our local pharmacy. Someone of my stuff comes specality pharmacies. Meaning they have to order it, if they are allowed to, and get it to me. I need portable oxygen, IV supplies, IV poles, all my meds, respiratory devices. I am sure you read this and are thinking "Are you crazy, your traveling with all that" Why yes, cause my nurses are top of the line, and love deeply and make sure I have a life outside of a disease. And my food allergies?? I am a Chef give me a two days and i'll have stuff packed for me and the momma. Wish I had thought of that when me and Sif did our road trips. Live and learn right?? You truly do not know road tripping until you travel with me lol.

Me and Wonder Woman have done this before, so there is not much we worry about. I am pretty good with staying safe and shes awesome at going "um did you think that thru" "do you want to end up in the hospital" "have you lost your mind" you really got to feel bad for sometimes. I often get the mind set, "Nothing can stop me" and she's not far behind me making sure I do think things thru. However!! I was way to excited for this. I can get in the pull as long as its not above my waist. OMG, I more then likely will not because germs freak me out. She also gets to watch me chase after weird things and take pictures. In texas I took a pic of a gigantic centipede cause i never seen one before.

I am really looking forward to this trip, I am so excited!! I use to travel all the time, with her to.

But I guess I best get off of here. I have a busy day again tomorrow and for the rest of the week really.
Love Yall,
~Poppet

I have woke up the past couple of mornings, with my lungs bothering me, but not enough to be concerning, and my peakflows are decent. Its annoying more then anything. I know some nights I need it to sleep because they get the best of me but I am ok.

I wanted to take a minute to talk about a few people. Recent appointments had left me crushed but within a few texts, and a visit with someone, it made think of a few things.

~ I am not alone. Somedays I feel like I have no one to lean but that is far from the truth. I a group of warrior that has stood by no matter what. Bad news, good news, tears, happiness, they don't care they are THERE. For me. By my side. When I need a shoulder they are there.
~ When everything seems dark. It is not. There could be a light at the end of the tunnel. If worse case scenerio is true, and I am giving the greatest blessing, I can do so much I can no longer do.
~Life continues to go on. I can face it like I always do and fight with every thing in me and win. There is no reason to let go. Re-think things. This is the time to be on my knees in prayers and let God work miracles like he always does.


I am strong enough to beat this. And I am going to beat this. I also have Wonder Woman. That reminds me that I have this. She has learned things I never even knew I taught her. She knows the proper way to pick vegetables, she knows the proper way to put together one of my outfits (think cut up and tied together shirts and skull bandanas) she has picked my tattoo's WITH me, and she can pair makeup. What more could a girl ask for. She knows the importance of us having matching things, and supports all of my crazy decisions. She encourages me to realize my dreams can come true. Even when I tell her Ms T's and I's business plan.

I got this!! WE got this, me and my warriors as I call them. Most of yall are nurses, the others are friends I gathered along the way or never left my side. Yall have looked past every ounce of my disease and never held it against me. I do believe we can fight this together and win the war. I can not do this with out yall and I am so thankful for the uplifting support I have thru phone calls, video chats, texts, messangers, FB, you name it.

I must hop off here though, busy week ahead of me, but I'll keep yall updated.
Love
~Poppet

The Good with the Bad

My concerns of my lungs getting worse is probably not far off. I saw Superman today, and I told him if I do not use my mucomist, my lungs feel stiff, and thats with clearing my lungs. He kinda looked at me and asked he can do a Pulmonary Function test to see if I have progressive lung damage. The medical people know this is BAD or well could be. I have hope. Hope that even in worse case scenerio, that I will get what I need. I have faith that I will be brought thru this. Have faith that every last thing will be OK. Grandpa use to tell me its not the battle that counts, its the war. You can lose a battle here and there but never stop fighting until the war is over. You know what he is RIGHT. I will grab my fairy wand and it with every once attitude I have in me. I will never let this disease consume.

To move on to my POTS. Well I am stable and we are gonna persue Vanderbelt research. Which all research points to saline therapy. Which well, its running right now as we speak. But with POTS, I have disease that makes me allergic to life itself. I am not even joking. I am OK with this, I am use to being a Vegan. But they now want to make it an "offical" diagnosis. And you know what that means?? Bonemarrow testing. My heart just sank when I saw this. BUT if they can give me proper treatment, outside of benadryl/pepcid, I am so lets go for it. I have come this far might as well jump feet first into this and face it head on. I GOT THIS.

Of course I heart this and sent out a few text messages. And I got some support that I know is always there. And Wonder Woman will never let me do this alone. Though at times I feel guilty I have put her thru so much, though she makes the choice to stand by me. Others looked up exactly what is going on. But lets face it, what super hero hasn't gone thru hell to come out who they are?? I am not saying I am super hero, I am rock the pixie wings. But sometimes we need fiesty, and stubborn attitudes to know we can get thru this. With lots of prayers. It has worked before. I will never forget the RT that spent the entire night in and out of my room. finding every device he could to open my airways and get me out of respiratory distress. Or the nurse that held my hand thru Vtach, waiting for the needed help, the RT that held my hand and cried with me thru an MRT while I was alert and not breathing. All who I have never seen again but played an active part in saving my life and who are God's angels. Yes the tattooed girl is a Christian. Yes God does send angels in human for to help us along the way.

BUT I am pretty sure there are potatoes in my kitchen wanted to be cooked. I am also sure that they need "cheese" sauce to. So I am gonna go do what I do best.
Love Yall
~Poppet