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
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
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