Short Update

Not a lot has been going on cause well this summer has taking a toll. I got my PFs back up to have them just drop right back down. It's the heat. My body does not cope with this incredibly high heat. My breath is short, and theres days where I can't even finish cooking. Let alone eat well cause I have to eat between breaths which lets face it can be a bit hard...  There are days where you have to pick on or the other. But we fight to keep me home. I feel like I am always on something. But I mean lets fave it happens. I was half praying for iron to be low for an explanation other then I have stupid lungs but it was not that low at all. So its just these silly lungs. Or it could be the whole in my heart but that is also very unlikely cause it took an MRI to find it. My entire summer has been spent in bed reading and do moderate exercise when I can to keep muscles strong. Which is why I have been MIA. My iPad keyboard broke so I wasn't able to update.

I am trying to get my lungs working decently for Wonder Womans birthday coming up so she won't have to worry about me. There has been a few of her birthdays spent with me being sick. Whether is a procedure or me just being sick we have spent a few with me quite poorly. Which isn't fair to her. But she takes in stride and makes the best of my crazy life. Which I am beyond grateful for. She really is the rock in my insanity.

There really is not much to update because I haven't really been doing anything. I just wanted to get on here because I know some people check on this regularly for updates cause I other wise will not talk about my health. It's been a LONG hectic summer with the heat and the most I have done is pup sit the All Fathers puppy dog.

Ima hop here eat some chips then put food away!!

Love Y'all
~Poppet

Frusterated

While I am waiting for my Zofran to kick in so I can take some meds. I figured I might as well update this as I have been a bit frustrated. This set back has caused a few issues in my life that are out of my control and with the steroids I have to step back and calm down.

To start off, I wanted to do something with the All Father today but because of the hot hot weather and the rain we are supposed to have we all agreed it was best I stay calm and not put me in a car. To wake up to deent weather for the start. Which I had accidentally fell back asleep this morning after I got up to take meds to lessen the side effects of Pulmozyne I woke pretty dehydrated. We are working  on that still. 3rd liter, and who knows how much liquids. Dehydration makes me BP low so I he been working on that to. Right after I woke up and got fluids running I of course do treatment and a part of the piece that connects my tubing to the Neb broke off, which we think I can rig it until I can get a new script for a new Neb on Monday. I called the people that use my Neb and they can't get me a new one until I get a new script because I dont order my Neb cups thru that company my script lapsed. It's all good tho Wonder Woman is here!!

Then of course with my current health set back I have pretty much just dropped off the face of the earth. As I spend most of my day trying to stabalize levels, coping with low levels, or doing numerous amounts of treatment. Which drains me so I pretty much just recluse and do nothing. I listen to a movie while trying to balance out my life. So in doing this I have quite a few people messaging me asking why I am gone and why I am ignoring them. A few even being a bit snippy with me. Wonder Woman just makes a face like oh dear because she knows my fuse is short thanks to all the steroids she put me on. I have told a few of them it's not personal I am just sick. I am so tired and so drained of everything in me you can see it in my eyes. When I get a moment to sit with out treatments or pills or food to stable off whatever is lo whether it's my BP or sugar I just want to sit there and close my eyes because I am so physically drained. I am beyond exhausted. And no matter what I say no one is going to listen so some I just don't bother. I just simply say I'm sorry I am really sick at the moment and leave it at that. I don't want to let the steroids get the best of me. I know it's mind over matter, I just wish people to took the time to understand and believe me. Just simply believe me. I learned a long time ago you just can't make people understand no matter how hard you try. I am just drained.

But I best get off here and find more water to down.
Love Y'all
~Poppet

honestly

I am not sure I am gonna post this yet but as I sit and so breathing treatment just to catch my breath for MORE PT I figured I'd be honest on here. I promised Wonder Woman a long time ago I'd be nothing but honest with this blog no matter how heart wrenching my life gets.

If you know me you know the last few weeks have been exetremely hard lung wise and we've had a set back. Which I am always confident I can fight this. I may have come off prednisone to soon, it may be the heat, or we may be facing a pretty crap reality when it comes to my CF. I might be coming to the part where I am constantly short of breath. I am constantly fighting and we look forward to good days, we take advantage of good days. We make the best of the bad. There is nothing more heart breaking then the person who selflessly sacrafices herself for me looks me in the eyes and says we may be at the part of the disease where you are just constantly short of breath and we make your breathing as easy possible. That's right easy as possible, not better, easier. No one wants to hear this let alone witness this.

No one wants to face things I have to on a daily basis. No one wants to watch someone they love struggle. I also don't want to watch and see the sadness in people's eyes. I don't want to see some one hold back tears because once again I am sick. There is a lot of guilt that goes with having a horrid chronic illness that's progressive. You feel guilty that you put so much on people, you feel your the reason for their sadness. It's normal to feel this I am human. But use those feelings for good push thru and fight. Fight. Fight hard and then push a little harder and remind people you got this and you will survive because that's what you do. You survive. And you pray. Pray with meaning and God will answer.

I had two close friends check up on me recently and they both live over seas, I have recently gave up Facebook and they didn't know cause I sorta just disapearred and they were worried. And one told me today I was there Wonder Woman, I kindly informed them no no I am just an average girl because I am. No more no less I am just me. They told no I fight for survival and inspire others and that makes me hero. I don't see myself that way, it gave me a boost I needed after all this going on. Sometimes I just need a soft reminder yes this gets tough and bad but I got this.

I have never lived my life for others, I do me and try to leave a postive impression on everyone it's what I do it's who I am. I'll leave you with this. Fight like a girl battling cystic fibrosis, fight for what you love, fight for your dreams, and fight for what is right. Stand strong in the face of diversity and know God gave you this life for a reason, and your here for a purpose and he will guide you thru this battle.

Love y'all
~poppet 

Tis the season for SALT

Tis the season for hot weather, excessive salt, and a lot of saline. I easily look at 3 liters a day and when I go outside the heat gives me instant chest pain and I look at really low blood pressure almost 3-4 times a day!! Why you may ask because I live with two disease that deplete my salt. Which makes me super sick.

POTS!! You haven't heard me talk to about this one a lot but it's the season here it flares. Heat and POTS do not mix well in me anyways. I get hot and I pass out. I also dehydrate very very easily because of this silly disease so I have upped all m fluids and salt including the ones i eat or drink. I eat almost hourly and have salted snacks strategically placed all over the house and down a redicious amount of water. Then when I dehyrate my secretions get solid and this ends very very badly. This basically means I struggle to breathe Like Wonder Woman concerned fight to stay out of the hospital sick. Which is not fun on either one us. I have been working so hard on a daily basis just to keep my BP and I have been spending a lot of time in my room because I can control the air temp in here better then an open place.

At the same time it is absolutely no excuse not to get in small amounts of exercises on the moments I am feeling OK. Yes that's right. If I have ONE moment I am feeling OK and I have spiked my BP and breathing decently enough I am doing small amounts of exercise to keep my lungs moving secretions out. It may only be 5 minuets some days but I can't find an excuse good enough to not exercise and keep my lungs working well enough. Some days there are actual reasons I do not exercise because Wonder Woman doesn't want to pic me up off the floor. And it's never OK to exercise if you lose breath hen you sit up which even I have been there a LOT.

Life has been an interesting balance of not feeling well at all, being super exhausted from breathing a lone, and still fighting to feel well enough to get up and do something for 5 mins and cook!! The one night I was to breathless to cook. We managed some how!!

But I must get off here for now.
Love Y'all
~Poppet

Update

I haven't been on here in a bit!! Well its that I have not been on my computer and I don't often update from my iPad because I am not on that as I use to be either. Yes i still play games but when I do I am in my bed propped up playing the WiiU so I don't have to exert more energy then I have to and I am in a bed the massages to loosen up the mucus in my lungs. Yes everything revolves around my lungs.

Not much has been going on. Taming my lung infection again that never goes away. My PFs dropped by 40-50 points and got stuck on around of antibiotics just in time for the 4th of July!! I was able to breathe enough to spend sometime with the All Father!! We had a get together at his house and with a bunch of people I don't know. However it was fabulous. I met a few people who knew people with CF. I use the word knew because they lost theirs friends to CF. I am not sure about their stories but this was before pulmozyne existed and when I hear these stories it makes me fight that much harder. Will I get my lung function to 450?? NO. I will not get back to a high lung function. I am on oxygen for the rest of my life. Or until I can qualify and get new lungs which I do not. Which I am OK with this. Because there is so much people do not realize about transplants. Which wishing me new lungs is almost a death sentence. I am willing to fight and be on oxygen to keep my life. I understand my sacrifices but I also understand life with transplant. I am all about extended my life which is hard work and dedication which always means something has to give somewhere else in my life. But anyways.

When I went to the All Fathers I offered to grill with him (oxygen off but in reach distance of course) and he's like I assure i didn't call you here to cook and I assured its OK I have problem cooking Wonder Woman knew I'd sorta take over. Well I was teaching the All Father to grill properly. Thats right!! Like a Chef. He's such a wonderful student and always enjoying cooking with him and truly love cooking with Ms. J. to!! The 4th itself I didn't do anything. As I am on Doxi and pushing myself to the limit isn't an option. And of course I got Rubes so I have to make sure she is safe on days where there are fireworks. The poor thing needs a chin to curl under and its usually mine. Not to mention fireworks are a trigger.

Outside of this I really haven't been doing anything. A lot of my summer days are spent inside and not doing much of anything. I know this is a short update but I really haven't been up to much of anything except coping with the side effect of a very harsh drug. IF I do go out, its with my Wonder Woman or the All Father and I am in a controlled setting with one or the other going "please don't smell that" (i smell everything its how I cook and perfumes or oils i should say intrigue me) or placing in an air conditioned setting.

But  I guess I need to figure out what's for lunch!! I have this lovely new cook book that I am working with thanks to Ms. J!! I also want to make some cinnamon buns to not sure when I will get around to doing that though.

Love Y'all
~Poppet 

Its been a bit since I updated. There really hasn't been much to update about. Most of my days are spent sitting around mostly coloring to reduce my stress levels. I have been out a few time which has consistently left my breathless, tired, and sick. I have come home gasping for air at times laying  down with Wonder Woman connecting me to an IV. Its almost a never ending fight but I mean its no different from any other day really. Some days I am just breathless and other days I have enough air in my lungs to get by for the day. But this never an excuse or a reason to not get things done. Life doesn't stop because I don't feel good and I refuse to let life pass me by because I am short of breath or a bit poorly. I only have one life to live and to let some silly disease stop me from doing what I love isn't going to happen while I have a say in it.

I am constantly reminded how blessed I am to be 29 and still have my own lungs and still be able to get out and do things some days. I have worked so hard to get where I am and I will continue to work to keep these lungs working well enough. Its an endless battle, there is NO end to this at all, ever. I have such an amazing medical team that has worked endlessly with me to stay as healthy as I can. Its not an easy battle it takes endless work. You battle the same thing day in and day out. You go to bed every night knowing all that work you did that day has been done all again the next day. There is no break, there is no oh well I will skip a treatment. There is no maybe tomorrow... You get up no matter how tired or sick you are. You get up, you do treatment you know is gonna make you sick. You sit on a vest, you use devices, and sometimes you have someone pound on your back to breathe. Me well I also connected to an IV to help keep things working. I take a handful of pills a couple times a day to just get up and do it again. I was half joking with Lady Sif that I needed a red cross on a bag she told me that wasn't a terrible idea since HALF my bag if not more is medication so when I am out and about I can stop and do the treatment I need to do. My health doesn't take a break, it doesn't take a vacation at all. Its endless work.

Some days I swear my battle is getting harder and I refuse to let this stop me. And thats OK I am tough girl I can handle this. I am so blessed that my friends take time out of there day to check up on me and see how I am. To come over and enjoy there time with me. Or link Wiis with me so we can battle it out.

So I am paying more attention to the TV then I am to this blog which is shocking but such a good show so I will leave you with this. Never put off things you can do today and make time for those you love.

Love Y'all
~Poppet 

Milk is the enemy!!

Its Food Allergy Awareness month and Cystic Fibrosis Awareness month. And I am equally passionate about both and never have any idea where to start but this year it was different.

Its tradition that me and Wonder Woman go shopping the weak before Mothers Day. We go to the mall enjoy ourselves and we of course get coffee!! We had gone to Michael Kors, Dillards and we stopped for Starbucks on the way to Sephora. I ordered my drink and they asked me if I wanted milk I said no thank you I am allergic to milk. I ordered it with Chai and Vanilla to syrups that are well flavored sugar. We went like we alway do and I took a sip of my drink. I was like OMG this is Mocha this not what I ordered. Wonder Woman quickly looked back at me and we went off to the side and I said try this you need to try this. To my horror it was indeed Mocha. Mocha is a milk based product. I immediately took all of my medication and we went back and gave them my drink and I said does this have mocha in it?? I explained again I had a milk allergy and I wanted chia. The guy was like the righten says. Im like no what was put in it?? SO the girl that rung us up was like I am sorry I really did think you wanted Mocha. I am like no you don't understand this is a true allergy. So at this point I am starting to take the rest of my meds because the milk is hitting my system with in minutes. They gave me another drink and the meds aren't kicking in fast enough. I am like hey lets go here really quick I want to stay close to the hospital in case this is gonna hit me hard. It didn't thankfully and I was OK about 10-15 minutes later.

So I looked at Wonder Woman and told her I just can't let this go this is a huge opportunity for education but I do not want any one fired I just want them aware of the severe consequences that could happen to someone with a food allergy. So I emailed Starbucks and was so scared they were gonna right me off as whatever. Just the opposite they took it very seriously. I said it was not the location linked to my account and I do not want any fired I just want people aware of the consequences of what can happen with food allergies. It's not that i accepted another milk, i declined any milk as I like my coffee black. They put a milk based product in my coffee. I did tell them the actual location. The situation was handled very well.

People are quite shocked I didn't proceed with anger after I explained my allergy and that I just wanted education. People do not learn from anger. They learn from compassion and education. When people order a drink they want exactly what they order. They order what is safe for them to eat or drink. This is a huge opportunity to explain. Allergies can kill. You could have killed me, especially since I have compromised airways due to CF. I am so blessed I had a nurse with me. I am so blessed I had the opportunity to act instead of react. I also wonder what type of education baristas have on Food Allergies. Has this one person ever dealt with them before?? Has she had proper education?? If I don't educate then who will?? I am OK and still on a decent amount of benadryl but I am so blessed this wasn't a worse reaction because food allergies are deadly. They can kill people. You hear about a food allergy and do not quite understand them ask the person to clarify. We are MORE then happy to educate you. I will kindly explain what an allergy TRULY is and what an intolerance is.

Food Allergies are anything that compromises the immune system. Its systemic and affect the lungs, heart, skin, airways, and digest system. It is immediate. Some people present with hives, some present with wheezing, and other present with other various symptoms. Action needs to be immediate and if someone ask for help let them instruct you further. All items being used on the persons food need to be cleaned as well as your hands. Alway always always take any allergy seriously!! Please be aware of all this and further educate yourself on anaphylaxis.

Love Y'all
~Poppet