Update

Its been almost 2 weeks since I last updated. I have a few drafts on here where I started and just left them. I may come back to them at a later date but I decided to start fresh.

My health hasn't been the greatest in fact it has been a bit poor lately. A few of you know this because I or Wonder Woman has told you what has been going on and the storms haven't helped. My oxygen is on 3 and I still huff and puff. My doctor today (not Superman) took one look at me and goes you look sick. Oh if you knew, and I explained the last 6 months to him and everything that has been going on and we are at the point if my levels are a point to low we treat. When did my life come to this?? No idea but we accept things and pray that things work out. We pray that I can improve just enough. A little improvement at this point is better then nothing. And I try not to let all this get down but sometimes it does get frustrating because I have so much I want to do with my life and hitting a brick wall full force isn't the way to do it. Which is usually how my health works. I have this stubborn attitude and I won't stop my dreams because some disease determines my life. But even I have my moments were i just cry. I mean really who doesn't??

It does get me down but I am not so worried about it because I have the best team I could even begin to ask for. I have this team of medical professionals that see's me as a human. To them I am Poppet, I am not just another girl with CF, which is so odd to see in the medical but everyone is always working so hard to keep me stable and get my health to improve. They work effortlessly to help me and they even stand behind who I am. I have gone thru the ringer to get my Justice League fine tuned. I have been thru some not so great doctors to get the wonderful team I have and it was worth because I know they will do whatever they can to get me back to my old crazy self as some of them like to describe it lol.

Then not to long ago my friend Z sent me this song called Impossible the original lead singer of Fly Leaf wrote it and its under her name but I alway spell it wrong, and it talks about how I can barely breathe but I still sing, I can't run but all these miles have passed, and that every day I live the impossible and see all the beautiful things around me. And after i finally listened to I bugged him in Classic Poppet fashion "OMG that is my theme song!!" I mention this because she talks about how giving up is never an option and that every time things happen I remember I have gotten thru a lot of crap up until this point. Which I do thank my Prayer Warriors for because if it wasn't for their endless dedication of getting on their knees and praying with me, I am not so sure how far I would have gotten. All the seniors at church know whats going before I can update anyone. Classic church fashion right?? But I can't be mad about it at all, really quite thankful because prayers work!! But now that I am off track...

Giving up is not and never will be an option. I will fight for this life and for my health. Tomorrow isn't guaranteed for anyone but my life tends to throw it in peoples face and I say that all the time. I just want to teach people how gorgeous life is, how a simple smile can change someones day, and there will always be some type of hope out there. And to remind people to stop and watch the birds. Random story again. It was snowing yesterday morning and my breathing was HORRID, and I opened the blinds for Rubes the Cat to pear out an torment the little squirrel the way she alway does, who we call Fizzle Bottom. Theres this little tree right out my windows and these to little cardinals were perched on the tree and their color on the white was so gorgeous and I just sat and stared at them, and to get on FB to find out the All Father was doing the exact same thing down the street with different Cardinals!! Oh and I also check up on the Ferry Bird quite often to I might have to share a pick of him he's a cute little dude.

But this is a bit long so i'll hop off here
Love Y'all
~Poppet

Not a lot going on

You know I do not know where i'd be with out Wonder Woman. Recently I went to Founders Day at her job, and we left later then we wanted to and didn't get good parking but parked as close as we could and I just looked at the distance and was pretty intimidated by the long walk and where it would leave me. Breathless, chest pain, and wheezing. Without hesitating Wonder Woman looked at me and said "you can do it lets go." I made it!! I felt like I ran a marathon and someone had punched me in chest but I made it. Oh and did you know its not proper to wear Skulls to a "sunday best" event?? Yeah me either... But I tried to get away with it!! Then by the time we made it lunch my BP was a bit low and almost thru up all over the waiter. Poor Wonder Woman once again. "Your fine you'll get thru it." Which I did but wasn't sure about it.

I haven't been out much since with all the weather. It messes with my breathing to the point I have to cough to get a return on my line because there is much pressure built up in my chest. My lungs are bad as they are to top it off the weather makes them worse. I keep putting things off that I need to do but I hope people understand.

Have I updated on my new bed yet?? Well I am sleeping better but my lungs are still quite poor. I am not sure they are gonna improve much and which I have to come to except thats a part of this life. Sometimes things happen and well my lungs take the brunt end of it. I know Monday I tried to put my oxygen on 2 and almost passed out I turned the oxygen back up and was fine. Been ok most of the week nothing to concerning to up date on. Well health wise that is.

I promised the All Father I'd right a blog on the medical field and where I think it needs to change as a patient. Oh like not sewing when you have a listed side effect?? I have many thought and ideas on this but not sure where to start on this. Not sure how to organize my thoughts around this subject with out putting my opinion to much in it. He assures me one person can change the world and i PRAY I can. I'd love to see change. I'd love to see the world a happier place.

Then theirs Batman who had a dream I was a Mommy and been convinced ever since a Mommy is what I should be. It kinda freaks me out that a child could not only end up like me but have my diereses to. It's a REAL issue that many times gets over looked by people. I am not saying him persay but in general. My diseases are Genetic...

Other wise I am gonna start figuring out how to publish a cook book. I am so unsure of how to go about doing all this but I am sure I can do this. I have the recipes and stuff set but need to get things organized and figure out who to get to publish me.

But I guess I best get off here
Love Y'all
~Poppet

Life

Life has been particularly busy lately. I had an appointment with Superman but I am not going to update about that yet. Time will come for it but now is not the time. A lot has been going on though.

I have been hanging with some friends of mine most that have none me FOREVER and it has snowed to weekends in a row so no tattoo appointments which totally bothers me but I have to keep my lungs in working order that is a requirement.

I also have never realized how odd my life is until I start talking to people I don't know. No this is not directed at any one person its just a general thing I have noticed theres not many people I don't talk to. You come up to me and your nice to me I will sit and chat I am ok with it. My reality is much different then other peoples. Death is constantly thrust into me face and I have no choice but to stop and do treatment and I miss a treatment its a crap day. Lately my peak flows are so low and I am constantly to tired to do much and I almost never answer my phone now a days and if I do your loved. But anyways...

When I talk to average people that do not know me I come to find out how weird my normal is. "What do you mean you have to do midday treatment??" "You just don't want to see me." "Your oxygen is an offbeat fashion statement." "Why do you need that thing in your arm." "you can't be tired you just don't want to talk to me." OMG!! Some days Ive just had enough. But my reality is a mess. My reality REQUIRES and IV, Breathing Treatments, Deathly amounts of Potassium and Salt, Oxygen, and frequent uses of inhalers and anti-inflammatories. I need these to survivor!! OH!! and Chest PT, and sitting up to sleep. If I don't do all of this, all this non sense to others, I die. Mel lungs are so weak I just can't keep up anymore and I am OK with that. People around me that love me are OK with that. Society?? Not so much. And you know what?? I could careless. You are truly blessed to not have to cope with all this to have all this constantly thrust into your face and I am truly OK with that but you should not harass someone else because you don't "get it." And not every one harasses me some people truly just don't get it and want it explained to them which I do to the best of my abilities but I am losing ways to truly break it down for people. Most people I know have watched me go thru all of this from the very beginning.

I can relate to things other people have no idea how to even cope with let alone grasp, I have been thru more then most people have and I have people bust their butt's to keep me alive. I am beyond thankful for them. I also thankful for the people who stick by me in this crazy world and at least try to understand. I prefer questions then just assuming whats OK. And one nice person coming up to talk me is one more person that has heard of my rare disease which gets the awareness out there. Most people have never heard of all this. But this stuff is so real and so devastating to those around me because they not only have to live thru it with me they have to remember the stuff I don't. And I am so blessed beyond measure to have my little Warriors or my Justice League as I call them on here. I truly love them all.

Love Y'all
~Poppet 

Update

I guess its time for me to do a proper update. Its been a bit between the holidays and everything going on but I have a few minutes before I have to do meds so I figured I'd update or try to do a proper update.

The last few months of last year were not the best for me. I had appendicitis and I was in so much pain and so drugged out of my mine alls I was doing was sleeping. I wasn't much better coming out of the hospital I was still on lots of meds and needed surgery. Lady Sif would contact Wonder Woman to get updates and so was the All Father. I was so sick and so drugged I just wasn't able to use my phone. I was just sleeping or drugged out of my mind. Then when I went to get cleared for surgery I find out what I already new how poor my lungs are which we will get to that. To have surgery and ruin my lungs a bit more. While going thru all that I lost someone very dear to me which I will not put her on here but its also something I had to cope with and also help people I love cope with.

As for my lungs they are just spent. Lately my PFs have been a bit low for me but I still have to do things that every other person does. It gets really hard to do these things some day and when I try to fit things all into together it just doesn't work something always has to give and its usually my lungs first because I am stubborn. My lungs typically ache, Im usually short of breath on oxygen, and tend to get a bit dizzy. Sometimes walking to the truck is to much and many days I am struggling to keep up and by the time I am out and done I am so tired I just want to sleep but I know thats not an option either. Most days its hard to sleep because I don't get enough oxygen when I lay down which makes it harder to sleep. I need to be almost sitting up to sleep now a days which that will happen comfortably soon. I see Superman soon and all this is just a day in the life type thing. Nothing to cause alarm just me needing to slow down for meds and to catch my breath. I know this is a lot to understand and a lot to accept but its my life and its my only choice to accept it. I have also learned that even if I am feeling poorly and do not want to do a single thing but sit there and breathe I still very important to make time for those you love. I have yet to be disappointed in doing so.

Around Christmas oh I think it was the day before Christmas eve actually I got a text from Lady Sif asking me to come by that is if I felt all right. I wasn't feeling my best but Wonder Woman and Grandma got her gifts wrapped got a few things done for me while I could get ready and get out the door to see her which I am so grateful I did. I got to see my sweet pups and meet her lovely family that I have yet to meet cause of where they live and they were near me for Christmas. Then the next I went to see the new Star Wars movie poor Wonder Woman had to keep at my pace but we made it work. Somehow.

This past weekend I had made last minute plans with the All Father. I was so tired and just dragging that day but I got up and got my butt moving not something I do well in the first place. He picked me up and when just went to his house. I got see my kitty siblings and meet Harley the dog. No not my Dog Dog but another one with a sweet personality and we made friends and I had another lap dog that was bigger then me. We had to keep reminding him I was tiny lol I also got to play with some really awesome drums. Not like a kit but more like bongo drums. Which I fell in love with!! Then I found out some of the drums work well with Chest PT. I love spending time with the All Father he is such a huge part of my life. Now I am making time to do other times in spite of how I feel.

I guess the point of this blog is this. Time is never guaranteed for anyone, mine is thrust in my face more then most. Its so important to stop and do what we love, and spend time with who we care about. Life is such a beautiful thing and its so important to be in the moment. I enjoy my time with people. Errr I enjoy time with certain people as I am still that antisocial girl that hates everyone lol.

But I guess I need to get treatment done and make lunch
Love Y'all
~Poppet

I haven't updated in a bit. I don't think I have since before Christmas but I didn't look before getting on here to type this. I have a few more phone calls to make but since my heart is being silly Id sit here for a minute or so to do an update.

Nothing really has been going on. I have been trying to get my lung function back after surgery but well I haven't and intact today they were quite low but if you look outside you'd see why. We haven't had the best weather lately. It's either nice or really really cold. It was almost 80 on Christmas and it snowed this past week. I am waiting to see Superman  to so I can tell him how poor my lungs have been. Which he knew this before I even had surgery and he knew what could happen, he said it would be a few months which I think i have a few weeks left but my lungs have hit a steady under 280/300 so i think its as good as there gonna get. Thats my new steady number and I usually feel the way those numbers say I could and some days worse. Which means I am always huffing and puffing. And when I wash my hair Lady Sif usually gets a text "please tell me showers are as over rated as they feel" which is crap. I have gotten to the point I rather do a shower right before treatment so I can even my lungs back out. Other then all this nothing as really been going on.

I spend a lot of my time playing video games or reading now, more so then normal. Its the easiest way to distract from the insanity of my life. So much goes on and hits me at once, I went to get my hair done the past week and we had stopped at Target which means I had to walk which so wasn't happening poor Wonder Woman kept encouraging me to push thru which I always do anyways and as much as she wants to get a scooter its not happening!! Not yet!! I am not there yet and we are gonna keep from getting there!!

Since I am always full of bad news I guess I will end this on a good note. Batman got me a ring and its just perfect. It looks like a lovely rose gold. It has a purple gem, and around the gem are flower petals with skulls and the bat insignia shaped like a heart on the band and it sums up my entire personality in one ring. I had left to get Grandma, she called and told me her can stopped and she needed picked up and on my way out there was a yellow package bag in my mail box and i had grabbed it and saw it was mine and shoved it in my purse and was impatiently waiting to open it. So once I got Grandma and got home I opened and it was just so perfect.

But I am gonna get off here because I am exhausted
Love Y'all
~Poppet 

Wonder Woman and Grandma are re-arranging my room right now, because I stepped one foot in there and the dust is just awful that they are stirring up and I am just taking meds to suppress everything so I am sitting here watching Christmas movies that my Grandpa use to love. If you know me, you know I NEVER mention him, he was a huge part of my life and taught me the true meaning of Christmas. I remember being 5 and him sharing a Christmas dance with me to his favorite Christmas song. Which Wonder Woman has to. We were out a couple weeks ago we were Christmas shopping after she was sweet enough to by me a Bagel and coffee, and we were coming back and I had made some obnoxious remark about people who come out to shop who never ever come out any other time of year. And she pointed out, Christmas has become to commercialized and its not what Christmas was meant to be. And she's right. It's supposed to be the season of hope, joy, caring for people, happiness, being with the people you love. Oh and donating to the salvation army, I am almost 30 and still bug her for spare change to give to them because i never ever have change on me. Then I remembered a long long time ago I was told on Christmas all war pauses for the day because it's a time of joy. I can't help but think what the world would be like if we all just stopped and this thought all year around. Why don't we have joy and kindness year around. Why don't we take the time to surprise the people we love?? 

For me?? This a really hard part of the year for me. Disease wise I mean. I am constantly on benadryl, steroids, I skip one pill and I am coughing and wheezing up a storm. I break out in a rash the moment I skip a dose of benadryl and then wonder why I walking around like a zombie. Every Christmas season my lung function drops a bit more and I get it. I just recently sent Wonder Woman a text "Tis the season for chronic benadryl" and she laughed and agreed I think more so because she gets my sense of humor. I also came out of my room this morning and stated I am dying my hair today while you help Grandma. I was talking what I deemed normal and she looks at me and goes "not with that breathing your not." I had my classic response "how did you know?!? NURSES!!" So needless to say my hair has not been dyed yet today. 

I just got interrupted to help out a bit or OCD my room. I have bad OCD and things go where they need to go. Now my breathing is a bit poor so I am going to get off here and treat my lungs and allergies.

Love Y'all

~Poppet

Quick Update

I have come to the conclusion you want me to fangirl let one of my favorite super heroes appear in a TV show... Better yet a DC ones. Its not often I get comics anymore because well thats a lot of money. To make this even more strange my favorite comic book author is Todd McFarland oh what I would do to meet him and get him to sign my favorite comic book. But anyways

Christmas is slowly approaching and I need to make things, some of my gifts are made, and often I have no idea what to make so I search until I find something perfect. Which I have, now I need to dig out supplies which I am just to tired to be bothered with at the moment. I had a long weekend of allergic reactions and business. Yep thats 2 reactions this week so no more new food for me. We got these little cookie mixes with mini frying pans, well their cast iron skillets really and found one that was "safe" well it wasn't I'm like Wonder Woman my face itches and I can't breathe. Ssssoooo lots of benadryl, steroids, and breathing treatments later I am listen to a metal Christmas Station thanks to Lady Sif and getting thru yet another reaction... To go out the next day to go the pet store where they are having an adoption thing going on. I made friend with a beagle I wanted to take home but I am not aloud to have a new dog until I can fully care for one. But there were about 3-4 dogs, a bunch kitties, and yes I petted them all and started to wheeze and we still had a mission to do. Get Rubes her stuff she needs, and apparently a water bowl with skulls on it for Christmas. So I had an asthma attack. So needless to say I am exhausted and want to do nothing but sit here, with my raw throat thanks to my oxygen.

Then our new beds are scheduled to come and I need to rearrange my room, which if you know me this means Wonder Woman and Grams gets put to work and frequently get kicked out so I don't get sick. To make this situation worse for them, I have OCD and need things to be a certain and went into detail with Wonder Woman exactly how I wanted everything with room for Rubes to get on her perch that the All Father made for her, and the bed in a certain place and all the works. So now I owe poor Wonder Woman lunch at our favorite pizza place because she also just helped me get a TV. She's deserving I don't mind at all haha.

This has been a crazy busy month and we all still have so much to do, and week to get everything done, plus me doing what I need to do, plus Christmas. I am a bit over whelmed but art always keeps me in line and thinking clearly so I think I can handle this. I know Wonder Woman can. I remind her all the time she the nurse has me trained to handle whatever life throws at me and she can to. It's what we do. But I guess I need to get off her and start dinner so I can dig up some yarn.

Love Y'all
Poppet