Update

From what I feel lung wise the new medicine is doing a decent job. Its easier to breathe but not sure where my lung function stands, there is a possibility of damage!! But with the new med comes lovely side effects like my stomach!! It has destroyed my stomach to the point I am not eating much and I expressed my concerns to my Pharmacist. She's new there and is just as sweet as my favorite and they've both been keeping up with me which I love. And she told me she could call Superman and get Zofran for me (it's what I take in the hospital) and she called him and Superman did OK the script for me which I am going see if it works this afternoon with my salad. It works in the hospital in IV form so lets pray it works with the pill form. I was complaining about my tummy last night to the point I looked at Wonder Woman and was like its making me spin and I had to go lay down. She comes to check on me and my lungs hurt so BAD. Which i messed them up earlier that day when I got startled. But seem to be OKish so far today. Breakfast was rough but its a twice a day med as needed and figured it be best to way for lunch when I actually eat. I have ginger ale in the kitchen to just in case to. I was miserable Saturday once Pulm kicked in and then I forgot an enzyme for lunch I looked at Wonder Woman and was like what do y'all do in the hospital?? She made the comment well Ginger Ale which you already drink so lets get some!! First place I went!!

I also keep realizing people truly do not understand or get what I go thru. On FB or instragram I portray my life to be average just like anyone else just with the help of oxygen and IVs. But thats not the truth and I get so frustrated when people think I am just blowing them off and just don't want to hang out. When the case is, most days I am in so much pain lung wise, and I do not get a lot of air into my lungs. I can barely eat some days so I have no energy and usually sick with low levels but try to keep them up with food. I am always tired and lose my breath when I do most activities so to actually get ready and go out and spend time with people can be at times to much for me to handle. I work so hard to lead a normal life, I work so hard to function, but some days its just not in me. Some days alls I do is lay in my chair and watch movies. I sit my bed up to sleep or I just don't sleep. And it gets so frustrating when people just right it off as me being difficult.I just want  to scream you only text me when you want to hang out, you never keep up with me most days, if you did you'd realize whats going on. I know this sounds harsh but it happens a lot.

Wonder Woman tells me all the time they just won't understand they aren't around and that's their choice which I get, but some days I guess i wish people would just believe me when I say I am not feeling so great and I just want to lay around all day and not take it personally.

But I guess I need to get off here its time for lunch soon

Love Y'all
~Poppet

Lungs

I guess I need to do a health update because I sorta have mentioned it but haven't really let y'all know whats going on.

A few months ago I had PFTs, they came back horrid and showed I get less then a liter in and out of my lungs and they are so bad everyone is like "why aren;t you on the list??" Cause we have one last hope and Superman is bound to save me. He wants my PFTs back to 400... Most Day they are max of 310 which isn't much better and some days they are still under 300. Some days I feel like I am fighting a losing battle. I fight every day for a breath into my lungs. Some days its much easier then others with this new medication. But it's not where I need it to be. Yes I know let the med work but I have already seen a difference in my lungs, and people here the difference with me coughing up a lung.

Because of my such poor lung function I am constantly tired and mixed with new side effects its so hard to get anything done. I am never hungry and force my self to eat cause of my Potassium. My stomach contanstly hurts and its always sour. Mixed with my crap lungs some days it doesn't make for a good day. But don't think for a second I let it stop me. I was telling Lady Sif about all this and she explained it better then I can, "Sometimes you got to pick something, using your phone which takes energy, or saving it to get your meds done." And some times this is what I face. I do not intenntially ignore people. I try my best to keep up with things but the first thing to go is my phone. I know thats terrible to some of you but it's an unneeded energy. I need to get meds in me, I need to get on my vest, I need to get things done that average people do and something has to give.

Every day is a battle against my body. My lungs ache, my chest hurts, my stomach is being stupid, I am short of breathe, and the list goes on. I am short of breath on oxygen some days and I can't do things like I use to. I sure try but some days my body wins. I just can't keep up and it needs to rest. Most day half of this is a mental battle, which 99% of the time I got that handled but some days I break. I cry because my disease does consume me it takes all my time and effort and alls I want to do is have a break from life. But after I cry it out I remind myself I can handle this I have been much sicker, I have been thru far worse then this. I can fight this. And there is so much beauty in life that you can't let some silly disease stop you from not living your life.

Yes my lungs are getting really bad, I feel the mucus in my chest now and since its a bit warm i'll start to get dehydrated here soon.  Which is easy to fix I just need to get of here to do it.

So I best go get that done, and eat!!

Love Y'all
~Poppet

I hate social media

Last night I was talking to Wonder Woman, or well flipping out on her or well at her may be the proper wording about social media. Nothing she did but how people use it I guess you would say. I don't use it as much as I use to it and heres why. I feel people use to say whatever they want to you and are entitled to answer of your personal life, then get mad at you when you don't tell them. The All Father as well as Wonder Woman tells me I do not have to answer them and they are right but some pester me till I do then wonder why I am mad.

Before I explain all this, if you approach me in a polite manner, I will sit and talk to you and explain my insane life to you. In fact I am more then happy to tell you what life is like living with my disease. I will stand in a store and talk to you and let you know what exactly my disease is and how it affects my life. But heres the thing, they are always POLITE to me. Again, if you are polite and kind to me I will sit and talk to you no problems what so ever. Heres my problem, when you demand to know about my personal life. Yes that's right DEMAND to know about my personal life and then get mad at me and call me all sorts inappropriate names when I do not.

I do not hide the fact I am on oxygen from social media. This is who I am, my friends get it why hide it?? My profile pic has me with oxygen on with someone close to me were both smiling and happy. I get a lot of strangers see me pop up on friends list and the first thing they ask me is. "Why are you on oxygen." Yes I understand people are curious and its OK to be curious, but don't just pop up on someones FB and ask that. In person I always get "hey can I ask you what might be a personal question??" It's very rare in public I have someone just strait ask that. Which isn't the bad part. Me being the sarcastic person I am says this. "Because I need it." This usually does not go over well at all. "You know what I meant." "Why do you have to be such a ...." Oh and my favorite (with a few explicits I won't post here0 "your gonna grow old and lonely (insert bad names here) here you know that I hope you live a miserable life." I even got a message telling how disrespectful I am because I will not entertain peoples blunt in your face questions because they think they are entitled to know my life. It even goes as far as "well you wouldn't have posted a picture of you with it, if you didn't want people to ask..." Seriously?!?! You think me sharing a pic with someone I love is so you can demand to know what is going on in my life?? Sorry dude!! It was so my friends across the pond can see my happy life cause I am actually close with them and if they messaged me any of the above we have been friends for year and its more of a worry not an entitlement.

So more to the point. It's not the fact that you ask me why I am on oxygen, it's the fact that you think you are entitled to my personal life because I am chronically ill. You think your entitled to answers because we are on a screen and you can't see and you can say whatever it is you want to me. It's very rare anyone see's me as a person. More of an object that has a tube running out of them. Then get nasty with me when I don't answer you. I am not treated like a human because I am chronically ill, not by society and not by random medical team. Why do you always think I love my team?? Every from Doctors to Delivery guys, to people who help me in the pharmacy. And the home health girls that taking to the time to get to know me. Because most of the time I am dealing someone who see's me as an object or a disease and not the girl behind everything. Who by the way speaks fluent sarcasm.

Yes, I am chronically ill with tubes running out of me. But I am also so much more then that.

Love Y'all,
~Poppet

Health Care

Not to long ago I was talking to the All Father about politics and health care. Being well into the health care system I had a few opinions myself and was proper about it. He encouraged me to post about it and let my voice be heard. I have been a bit indifferent about posting about this but he has never lead me down the wrong path and he assures me one voice can change things. 

OK this is NOT a political rant, but what I think need to be changed about health care. 

Being chronically ill I spend a lot of time at hospitals, doctors office, and pharmacies. And I have been very blessed to have such a good medical team, most people I have come in contact with have been beyond amazing and are always willing to help me out and what I think needs changed has nothing to do with them. It has everything to do with things they have no control of. I am not even sure who I need to contact to get my voice heard and maybe someone will see this and no who I can send this to or will send this to the appropriate people. 

Health care is expensive. I am talking almost if not over 5000 a month. Which some of this is taking care of but some of it I can't afford. I just can't afford it. There are options for me to afford it but I have to contact private companies to see if I can get finical assistance to cover cost I just can't afford. I also have government based heath care which I am happy enough with when it covers what I need it to. Something you can fight and appeal to get things to go out way but thats not always the case. Many times for this you need to get your doctor to right a letter proving it is medically necessary. When I had private health care it wasn't this hard to get what I needed but I am to sick to work and pay for private health care and to old to be on my parents insurance. For a bit of a back story. 

When people start to say they are gonna change health care, they need to talk to someone who is chronically ill and/or legally disabled. A lot of us have opinions and ideas that could work. For example. 

Give people like me, the option to be on their parents insurance. Yes make strict guidelines that need to be followed for their children to do this, but make this an option!! My life would be so much easier if I could go back on my parents insurance. I had so many issues coming off of it. My home health bill sky rocketed!! Some of my meds were no longer covered leaving me in a bind. Yes I understand there is a cut off age but their should be for the chronically ill/disbaled. 

Make it harder for people to sew. I see adds all the time on TV "did you have this side effect... well you could sew for thousands." Dude its a common side effect that you can google and the pharmacy gives you. Some side effects I can't cope with (was on one that kept my Potassium at 2) which it was pulled quickly. Superman could not figure out what was wrong until he looked up side effects. and so glad he did. People should not be able to sew over common side effects. And if you have a "major side effect" and don't tell anyone its your fault. Mean?? Probably but true. If you ask our pharmacist they usually know how to help you. Yes someone aren't so good. I had one that couldn't even tell me how to use mucomist. Then I have one that will sit their and explain things to me. I was actually in this weekend and she walked me thru everything I needed. You just have to ask. Nurses or Resp. Therapist ask them they may know more then the doctor because they work with it. It makes your tummy hurt?? Suck it up butter cup. (no really the nurse has told me this before it not so blunt fashion).

If made it harder to sew, medical professionals would to have to pay so much for their liability insurance and cost might go down. Also don't allow pharmaceutical companies to monopolize on meds. Yes I understand they need to make money to but 6000 (actual cost before insurance) is redicilous for a cost!! Yes some companies have options but thats an insane cost for a med that someone needs and still needs to pay for other medications and food!! I looked at poor Wonder Woman at the cost of it and told her I understand why patients are non compliant!! She agreed.

There are ways to make health care affordable yet profitable. We just need to talk logistic with politicians that actually care to listen.

I encourage you to help me get this out there

Love Y'all

~Poppet

Rare Disease

Monday was Rare Disease Day and Lady Sif's birthday!!

I was gonna update of Rare Diseases Monday but clearly I am a few days late though on all of my social media, and Wonder Woman's I have posted about rare diseases.

To come under the umbrella of the rare disease title there must be less then 100,000 people diagnosed with your disease. Theres much debate on whether or not POTS and MCAD is truly a rare disease, cystic fibrosis how ever is. Also my niece has Steven-Johnson Syndrome. Which is even rare then what I have. When I heard she had this I was just heart broken. Yes my allergic reactions are bad, but hers are pretty crap and way more dangerous then mine. My understanding of all this after in-depth research on what I can find, is the top layer is skin essentially just peels off, and leaves open wounds that can cost a massive infection and lead to death. She's OK and back to her normal self but this is not something you can just look at and say "you have this." This is something that has to be triggered and activated and now she has to be careful about what she takes.

As for the rest of the diseases if you follow me or know me you hear about quite a bit. They effect my daily life and I am not sure if I updated lately my PFTs showed how bad my lungs truly have gotten. I will update more on this later.

These diseases as you know effect every aspect of my life. I had to give up things I love (like concerts) because people smoke or do drugs, which gives me an awful reaction. But it has also introduced me to many things I love. Video Chatting, Coloring, Sewing, Cross Stitch, Reading, and Baking. Yes I am a Chef but I am a real chef not to offend anyone but I do more then just pastries. I try everyday to over come this, to maintain my IV and treatments well trying to lead a normal life. To balance breathing treatments and going out with out getting sick.

But what people do not see how Rare Disease effect every one around us. Every missed phone call, Wonder Woman worries that something serious is wrong, every missed t ext she is more worried. Poison Ivey has volunteered her time to run a page to get awareness out and raise funds for me. Wonder Woman educates people on what my daily regimen is like. Everyone works together as a team to keep me healthy, to keep me stable, and to just keep my spirits up.

If I miss to many days at a place I frequent people get worried that I am sick again. People worry constantly if I am ok, am I sick, how I am doing. I always send people here and when I know I can I give them my FB because every now and then I post on there to keep people up to date or at least let them know I am alive.

But most importantly Rare Disease Day this is a day we as a community can join together and get our voice heard not just for our illness but for everyones. Thanks to the internet we can hashtag and can learn about other peoples diseases, we can join together across the world and get our voice heard!! Which is a huge step in finding a cure or just getting education out there.

But I am gonna hop of here and enjoy my coffee

Love Y'all
Poppet