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